DEPARTMENT OF HEALTH AND HUMAN SERVICES
Social Security Administration
20 CFR Part 416 (58 FR 47532)
[Regulations No. 16]
Supplemental Security Income; Determining Disability for a Child Under Age 18
AGENCY: Social Security Administration, HHS.
ACTION: Final rule.
SUMMARY: These amendments revise the disability evaluation and determination process for Supplemental Security Income (SSI) claims of children based on disability. The revisions amend the rules we published on February 11, 1991 (56 FR 5534), subsequent to the February 20, 1990, U.S. Supreme Court ruling in Sullivan v. Zebley 493 U.S. 521, 110 S.Ct. 885 (1990). In Zebley, the Court invalidated the use of a medical "listings-only" approach to the denial of children's claims for SSI benefits based on disability, and required the use of an individualized functional assessment of children whose impairments did not meet or equal the severity of listed medical impairments. As did our prior final rules, the changes made in these rules incorporate into the disability determination process for these children concepts and criteria reflecting current knowledge in the field of childhood disability and functioning.
DATE: This rule is effective September 9, 1993. The rules in §§ 416.924-416.924e, 416.926a, and 416.994a will no longer be effective September 9, 1997 unless extended or revised and promulgated again.
FOR FURTHER INFORMATION CONTACT: Cassandra Bond, Legal Assistant, Office of Regulations, Social Security Administration, 6401 Security Boulevard, Baltimore, Maryland 21235, telephone (410) 965-1794.
Provisions for SSI benefits for disabled children were part of the Social Security Amendments of 1972 establishing the SSI program, which became effective January 1, 1974. The Social Security Act (the Act) currently provides the same definition of disability for adults under the title XVI SSI program as it does for workers, widows or widowers of workers, and children of workers under the title II disability program.
The Act, at section 1614(a)(3)(A), defines disability for adults as the inability "to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months." The Act further provides, at § 1614(a)(3)(B), that an adult will be considered disabled, "only if his physical or mental impairment or impairments are of such severity that he is not only unable to do his previous work but cannot, considering his age, education, and work experience, engage in any other kind of substantial gainful work which exists in the national economy * * *."
The definition of disability for children is contained in a parenthetical statement at the end of § l6l4(a)(3)(A). The Act provides that a child under the age of 18 will be considered disabled for purposes of eligibility for SSI, "if he suffers from any medically determinable physical or mental impairment of comparable severity" to that which would make an adult disabled.
Under our regulations, the decision process we use to determine if an adult is disabled is different in concept and application from the process we used for children prior to the Supreme Court's decision in Zebley. Regulations §§ 404.1520 and 416.920 set out a five-step sequential evaluation process for determining disability in adults, which considers in turn:
Whether the adult is doing substantial gainful activity;
Whether, in the absence of substantial gainful activity, his or her medically determinable impairment or combination of impairments is severe;
Whether, if the impairment(s) is severe, it meets or is medically equivalent in severity to an impairment listed in appendix 1 of subpart P of the regulations in 20 C.F.R. part 404 (hereinafter, "the listings");
Whether, in the presence of a severe impairment or combination of impairments, the individual retains the capacity to do his or her past relevant work, considering his or her residual functional capacity; and
Whether, if past relevant work is precluded, the individual retains the capacity to do any other work which exists in the national economy, considering the individual's residual functional capacity, age, education, and work experience.
Sullivan v. Zebley
On February 20, 1990, the Supreme Court, in Zebley, decided that the "listings-only" approach SSA had used prior to Zebley to deny claims for SSI benefits based on childhood disability did not carry out the "comparable severity" standard in title XVI of the Act. This was because the listings were set at a level of severity stricter than the level at which an adult worker can be found disabled, and the approach did not provide for an assessment of a child's overall functional impairment.
The Supreme Court held that children claiming SSI benefits based on disability are entitled to an "individualized functional assessment" as part of the disability determination process, comparable to adults who have impairments that do not meet or equal the listings and who receive such an individualized assessment. The Court found that, whereas adults who are not found to be disabled under the listings still have the opportunity to show that they are disabled at the last step of the sequential evaluation process, no similar opportunity existed for children under the regulations we used prior to Zebley. The Court concluded that, although the vocational analysis we use in claims filed by adults is inapplicable to claims filed by children for SSI benefits, this does not mean that a functional analysis cannot be applied to children's claims. As a result of the Zebley decision, we revised the rules we used to evaluate childhood disability claims. We published the revised rules as a final rule with a request for comments on February 11, 1991 (56 FR 5534).
Final Rule with Request for Comments
We first published these childhood disability rules in the FEDERAL REGISTER on February 11, 1991 (56 FR 5534). In this preamble, we will call the rules published on February 11, 1991, our "prior rules." Although our prior rules were published as a final rule, we asked for comments concerning the rules from members of the public. Interested persons, organizations, and groups were invited to submit comments pertaining to the prior rules within a period of 60 days from the date of publication of the rules. In response to a number of requests from the public asking us to extend the comment period, and in light of the unusual significance of the rules, we subsequently extended the comment period to July 8, 1991, for a total of 147 days (56 FR 21075, May 7, 1991). After carefully considering the comments contained in the 44 letters we received regarding the prior rules, we are publishing these final rules. The specific revisions we have made in the final rules in response to the public comments are explained in the following sections of this preamble.
Explanation of the Final Rules
These final rules revise our prior rules for deciding disability in childhood cases under SSI that had been in effect since February 11, 1991. As we explain below in the summary of specific provisions, we have reorganized the rules into what we believe is a clearer and more logical presentation. The reorganization does not result in any substantive changes in policy or application of the prior rules. Also explained below are a number of other changes we made in response to the public comments. None of the changes or revisions made to the prior rules in these final rules results in any way in a change to, or revision of, the substantive standard for determining children's disability.
In accordance with the Supreme Court's ruling in Zebley, these final rules, like our prior rules, provide that each child whose impairment(s) does not medically meet or equal a listing will receive an individualized assessment of his or her functioning. As in the prior rules, the final rules provide three steps at which a child's functioning will be considered. First, they require consideration of each child's functioning at the second step of the sequential evaluation process to determine whether the child has any impairment or combination of impairments that is "severe." Second, they provide for the consideration of functioning at the listings equivalence step. disability evaluations of children seeking SSI benefits will include a process for evaluating the limitations caused by a child's impairment or combination of impairments that is not based solely on listing-level severity. Thus, they provide an additional step beyond the listings step at which we may determine that children with severe impairments that do not meet or (medically or functionally) equal a listing are disabled based on an individualized assessment of their functioning. As a result, the sequential evaluation process in these final rules, comparable to that for adults, is still:
Third, they ensure that
Whether the child is engaging in substantial gainful activity;
Whether the child's impairment or combination of impairments is severe;
Whether the child has a medically determinable impairment(s) that meets or medically equals in severity a listing in appendix 1 of subpart P of part 404 or, if not, whether the functional consequences of the child's impairment or combination of impairments functionally equal a listing; and
Whether the child's severe impairment(s) so limits the child's ability to function in an age-appropriate manner that the limitations are comparable in severity to those that would disable an adult.
It is still possible under this process for children to have impairments equal in severity to a listed impairment based solely upon medical findings. Because our longstanding concepts of meeting or equaling a listing based upon medical findings permit us to find many claimants disabled, we have retained them in the final rules. We have also retained the expanded and clarified rules for making determinations of equivalence that were set out in § 416.926a of the prior rules.
These final rules also retain § 416.994a from the prior rules, to be used in determining whether childhood disability continues. Section 416.994a is modeled after the rules we use to determine if adults continue to be disabled and takes into account the final rules in §§ 416.924 and 416.924a through 416.924e.
Changes to Other Rules Related to These Rules
In the prior rules we made revisions to other rules in Subpart I that are relevant to children (e.g., § 416.913). As we explained in the preamble to our prior rules, these revisions added language to the rules so that they would explicitly refer to children. We have retained those revisions in these final rules.
Summary of Changes
The most important change in these new rules is a reorganization of the rules themselves. Our intent in the reorganization is to be responsive to a variety of concerns expressed by many commenters who thought that such basic rules as the need to consider evidence from all relevant sources, the guidance about children's functioning in § 416.924c of the prior rules (final § 416.924b), and the need to consider the "other factors" in § 416.924d of the prior rules (final § 416.924c) applied only to the individualized functional assessment. This reorganization does not represent any change in policy or procedure in the evaluation of children's disability claims from the prior rules. Rather, it reflects both our original intent and actual current practice. At the same time, it is responsive to the concerns of many of the commenters and clarifies the regulatory provisions to reflect our intent more accurately.
In the organization of the prior rules, the rule on individualized functional assessment immediately followed the definition of disability and the sequential evaluation process for children. This organization suggested to many commenters that the subsequent rules on age, functioning in children, and other factors were applicable only to individualized functional assessments at the fourth step of the new sequential evaluation process. Because the comments indicated to us that we had not correctly conveyed our intent in the prior rules, we decided to reorganize and revise them to clarify our policy.
In the reorganization, § 416.924 is still "How we determine disability for children." Final § 416.924a is now "Age as a factor of evaluation in childhood disability"; final § 416.924b is now "Functioning in children"; and final § 416.924c is now "Other factors we will consider." Final § 416.924d is now "Individualized functional assessment for children"; and final § 416.924e is still "Guidelines for determining disability using the individualized functional assessment." As we explain below, we have also moved paragraphs from former sections to different sections for clarity; however, all of the sections from prior §§ 416.924 through 416.924e are in final §§ 416.924 through 416.924e, only redesignated.
To clarify that the guidance on age, functioning, and other factors is relevant to determinations made at steps 2, 3, and 4 of the sequential evaluation process, the rules that are appropriate to all steps of the sequential evaluation process for children are now together in final §§ 416.924 through 416.924c. We moved § 416.924a(c) of the prior rules, "Terms used to describe functioning," into final § 416.924b, "Functioning in children," where it more appropriately belongs, and revised it so that it no longer states that it applies only to the individualized functional assessment. We redesignated § 416.924a(b) of the prior rules, "Basic considerations," as § 416.924(g), thus moving it into the section, "How we determine disability in children." Our intent in moving this paragraph into § 416.924 is to state clearly that at each step of the sequence, we will consider all relevant evidence, and that this evidence can come from both medical and nonmedical sources.
Because we moved all of the paragraphs of § 416.924a of the prior rules into other sections, we redesignated the rules that followed, so that the sections on age, functioning, and other factors are now designated as final §§ 416.924a, 416.924b, and 416.924c, respectively. These rules follow the rules on the sequential evaluation process and basic considerations.
We combined § 416.924a(a) of the prior rules (the general paragraph on the individualized functional assessment) and § 416.924c(a)(2) through (g) of the prior rules (the rules describing the domains of development and functioning and the specific behaviors) into final § 416.924d. In this way, all of the basic rules regarding the individualized functional assessment are together in the same section and are followed by the guidelines for using the individualized functional assessment in § 416.924e. We also deleted some references to the individualized functional assessment in final § 416.924b, "Functioning in children," and final § 416.924c, "Other factors we will consider," to make it clear that these rules apply when we assess functioning at steps 2, 3, and 4 of the sequential evaluation process.
Other changes made in response to public comments are explained in the discussion that follows, and in greater detail in the responses to comments. We made a few minor technical changes, which have no substantive effect on the rules, and which we also explain below.
In the preamble to the prior rules, we explained (in General Note on Style) why the regulations were written in the first and second persons, addressed to the children who claim to be disabled, rather than to their parents or other appropriate adults. Although we advised the public to comment on the terminology if anyone found it problematic, no one did so. Therefore, we have continued in these rules to address the children who are claiming benefits.
Section 416.902 General Definitions and Terms for this Subpart
We have added to this section, without change, definitions of the terms "adult" and "child" which were included in the prior rules published on February 11, 1991 (56 FR 5534). A subsequent final regulation pertaining to consultative examinations, published on August 1, 1991 (56 FR 36932), which also amended § 416.902, inadvertently omitted these two definitions. Section 416.903 Who Makes Disability and Blindness Determinations; Section 416.1015 Making Disability Determinations
We have added a new paragraph (f) to § 416.903 and a new paragraph (e) to § 416.1015 to reflect § 5036 of Public Law (Pub. L.) 101-508, the Omnibus Budget Reconciliation Act of 1990, which is codified in the Act at section 1614(a)(3)(H) (42 U.S.C. 1382c(a)(3)(H)). This law requires that we make reasonable efforts to ensure that a qualified pediatrician or other appropriate medical specialist evaluates the claims of children filing for SSI benefits based on disability. This law, which was enacted November 5, 1990, and became effective with respect to determinations made 6 or more months after this date, was preceded by an initiative the Secretary of Health and Human Services announced in November of 1989, which directed that in adjudicating and reviewing all SSI childhood disability claims, we were to include pediatricians among the medical personnel we use to evaluate these cases. The Secretary also directed that other specialists would continue to be involved in appropriate childhood claims. Since the Secretary's initiative in 1989, we have made extensive efforts to recruit, hire, and train pediatricians to evaluate childhood disability claims in the State agencies in each State.
A commenter on the prior rules pointed out that we did not have a provision implementing § 5036 of Pub. L. 101-508. Therefore, we are making this addition to the rules not only to reflect the statutory provision, but also in response to that comment.
Adding new paragraph (e) to § 416.1015 required us to redesignate former paragraphs (e), (f), and (g) of this section, which are otherwise unchanged, as paragraphs (f), (g), and (h).
Section 416.913 Medical Evidence of Your Impairment
Paragraph (c)(3) was added to § 416.913 in the prior final rules published on February 11, 1991, "Supplemental Security Income; Determining Disability for a Child Under Age 18," 56 FR at 5553. However, the paragraph was inadvertently removed by final rules published on August 1, 1991, "Standards for Consultative Examinations and Existing Medical Evidence," 56 FR at 36964. Therefore, in these final rules we are restoring paragraph (c)(3) to § 416.913 and revising it as explained in the following paragraphs.
For reasons we explain in the public comments section of the preamble, we revised § 416.913(c)(3) in response to a comment by deleting the phrase, "and to perform age- appropriate daily activities." We also revised the cross-reference. We also revised § 416.913(e)(2) in these final rules in response to a comment. We replaced the phrase, "non-medical sources," with the phrase, "people who know you." We also added the phrase, "and other caregivers," after "parents." In a technical change, paragraph (e)(3) was revised to change the punctuation marks after "assistants" and "naturopaths" from semi-colons to commas.
Final paragraph (c) is now titled, "Statements about what you can still do," which refers to what we formerly called "medical assessments." We changed the term in final rules published on August 1, 1991, "Standards for Consultative Examinations and Existing Medical Evidence," 56 FR at 36964.
Section 416.916 If You Fail To Submit Medical and Other Evidence.
In a technical correction, we are restoring to § 416.916 a sentence which states that failure to cooperate in obtaining evidence will result in our making a decision based on the available information. This sentence previously appeared in § 416.916 but was inadvertently deleted upon codification in the Code of Federal Regulations (CFR) of the final childhood disability rules published on February 11, 1991 (56 FR at 5554).
Section 416.924 How We Determine Disability for Children
This section provides the three-part definition of disability for children and describes the sequential evaluation process we use in children's claims. In the definition of comparable severity, paragraph (a), we made three changes. In response to comments, we deleted the clause, "or if you are an infant from birth to the attainment of age 1, be reasonably expected to substantially reduce * * *," for reasons we explain in the public comments section of the preamble. In response to a comment, we added to paragraph (a)(2) the phrase "community activities" to represent such things as after-school activities, church activities, and participation in the girl scouts and boy scouts. We also added in paragraph (a)(3) a cross-reference to final § 416.924b(b)(4), which discusses "work-related activities," as the term is used to describe functioning in older adolescents. None of these changes is a change in policy; as we explain in the public comments section of the preamble, the revisions are merely clarifications of the prior rules.
The policies in final § 416.924(b) through (f) are unchanged from the prior rules. However, we did make minor text modifications in response to comments; the revisions are only for purposes of clarity and completeness. In final § 416.924(b), "Steps in evaluating disability," we added after the third sentence, the following statement: "We will also evaluate any limitations in your ability to function that result from your symptoms, including pain (see § 416.929)." We also deleted the clause, "and consider it together with all other relevant evidence," in the next-to- last sentence of the paragraph. We made this technical change because the clause was redundant. Also, by stating that we would consider the individualized functional assessment—which already considers all of the relevant evidence—"together with all other relevant evidence," the sentence in the prior rule could have suggested that the individualized functional assessment does something other than consider all relevant evidence. In fact, our instructions make it clear that adjudicators will consider all relevant evidence when they perform the individualized functional assessment. In addition, in that same sentence,we made another technical correction, changing the phrase "to determine" to "and determine" in order to make clear that the disability determination is based upon the individualized functional assessment.
In final § 416.924(d), "You must have a severe impairment(s)," we have provided a more detailed definition of an impairment that is not severe in response to public comments. The final rule now states that a child's impairment(s) is not severe if it is a slight abnormality or a combination of abnormalities that causes no more than a minimal limitation in the child's ability to function independently, appropriately, and effectively in an age- appropriate manner. We took this language, in part, from Social Security Ruling 85-28, "Titles II and XVI: Medical Impairments That Are Not Severe". Therefore, the addition of this language is not a change, but a restatement of our policy interpretation. We also added the phrase "independently, appropriately, and effectively" from the regulatory definition of disability for children in order to describe the characteristics of a child's functioning that are salient to our evaluation. We explain our reasons for these revisions and our responses to all of the comments regarding step 2 in the public comments section of the preamble.
In final § 416.924(f), "Your impairment(s) must be of comparable severity to an impairment(s) that would disable an adult," we explain that at the fourth step of the sequential evaluation process we must determine whether a child who has a severe impairment(s) that does not meet or equal the severity of a listed impairment has an impairment of comparable severity to one that would disable an adult. We made identical changes in paragraphs (f)(l)(i) and (f)(2) of this section to emphasize what that determination means. In paragraph (f)(l)(i), we changed the statement, "so limits your physical or mental ability to function in an age- appropriate manner that your limitations are comparable to those which would disable an adult," to "substantially reduces your physical or mental ability to function independently, appropriately, and effectively in an age- appropriate manner * * *." In paragraph (f)(2), we made the same change to the statement, "is comparable in severity to an impairment(s) that would make an adult disabled." In addition, we made a technical change in paragraph (f)(2). We rephrased the opening of the paragraph to say, "If we find that your impairment(s) does not substantially reduce * * *." We made this change in order to state more precisely the nature of the determination being described and to parallel the concluding language in the paragraph," * * * or if your impairment(s) does not meet * * *."
Final § 416.924(g), "Basic considerations," was § 416.924a(b) in the prior rules. We deleted the phrase, "using an individualized functional assessment," from the final rule to clarify that when we assess functioning at steps 2, 3, and 4 of the childhood sequence, the assessment of functioning is to be based on all relevant evidence in the case record from both medical and nonmedical sources. We also reaffirm the important principle that evaluation of the evidence should result in an assessment of the child's functioning on a longitudinal basis—that is, over time. As we have explained above, we redesignated the paragraph as § 416.924(g) because it provides rules that are applicable to all steps of the sequential evaluation process.
Section 416.924a Age as a Factor of Evaluation in Childhood Disability
Final § 416.924a(a), "General," provides general guidance concerning the significance of a child's age in the adjudication of a childhood disability claim. As part of our response to the comments about our policies on determining whether an impairment(s) is "severe," we revised the second sentence of the paragraph by adding a statement that refers to the importance of considering age in determining whether a child's impairment(s) is severe. We also added a cross-reference to § 416.924(d), the severity step of the sequence. For consistency, we also added a cross-reference to § 416.924(f), the individualized functional assessment step, at the end of the sentence.
Because the reorganization combines all of the general provisions regarding the individualized functional assessment into two sections (final §§ 416.924d and 416.924e), we deleted the reference to §§ 416.924a and 416.924c in the parenthetical sentence at the end of § 416.924a(a)(4), which describes the relevance of age at the last step of the sequence, and added a reference to final §§ 416.924d and 416.924e.
In response to the comments, we added a new paragraph (a)(5) for children who may be difficult to test because of their young age. The new paragraph says that in any determination we will consider a child's age and whether it affects the child's ability to be tested. Even when a child's impairment(s) is not amenable to formal testing because of age, we will consider all evidence that will help us decide whether the child is disabled. We explain our reasons for this addition in the public comments section of the preamble.
Final § 416.924a(b), "Age categories," identifies the age categories that we use to describe children's functioning. Using these categories helps us to sort out the kinds of evidence we would expect to need for children of different ages, and to organize guidelines for determining disability in children of different ages. In response to comments, we have deleted the clause after the semicolon, "however, we will not apply these age categories mechanically in borderline situations." We made this change because there is no danger that mechanical application of the age categories in childhood claims will result in any advantage or disadvantage (as there might be in adult claims when the vocational "grid" rules are applied). We explain our reasons for the deletion, and why it responds to the public comments, in greater detail in the public comments section of the preamble.
Final § 416.924a(c), "Correcting chronological age of premature infants," explains when and how we correct the chronological age of a premature infant when deciding whether, or the extent to which, a physical or mental impairment(s) affects a child's ability to function independently, appropriately, and effectively in an age- appropriate manner. We have substantially revised and reorganized the paragraph in response to public comments. The paragraph formerly discussed the evaluation of both premature and low birth weight infants. However, the text pertaining to low birth weight infants merely repeated the examples of functional equivalence that appeared in § 416.926a(d)(10) and (11) of the prior rules (final § 416.926a(d)(8) and (9)), and provided no additional guidance. Moreover, as one commenter pointed out, there was a minor inconsistency between the definitions of "prematurity" in this paragraph and in § 416.926a(d)(10) of the final rules. Since it was redundant to repeat the criteria of two of the functional equivalence rules, we deleted the provisions.
With the deletion of the provisions on low birth weight infants, the rule now addresses the correction of chronological age for premature infants, which was always its primary focus. We revised, reorganized, and clarified the rule in response to public comments. Final § 416.924a(c) now explains that when a child was born prematurely (i.e., at less than 37 weeks' gestation), we may use a "corrected" chronological age to evaluate the child's development or linear growth. Final § 416.924a(c)(1) describes the two situations in which we apply a corrected chronological age, and final § 416.924a(c)(2) describes when and how we compute a corrected chronological age. Paragraph (c)(2) also explains that we will not correct a child's chronological age if we can determine from the evidence that a child's developmental delay is the result of a medically determinable impairment(s) and is not attributable to prematurity. Finally, final § 416.924a(c)(3) explains that we also will not compute a corrected chronological age if medical evidence shows that the treating source or other medical source has already taken a child's prematurity into consideration in assessing the child's development, or when we find a child disabled using the examples of functional equivalence based on low birth weight in final § 416.926a(d)(8) or (9).
We have revised § 416.924b(d) of the prior rules (final § 416.924a(d)) concerning age and the impact of severe impairments on younger children and older adolescents in response to a number of comments which demonstrated to us that the prior rule was not as clear as it could have been. In the opening of paragraph (d) and in new paragraph (d)(1), we clarify that impairments of similar severity may have different effects on children of different ages and that how a child adapts to an impairment depends on many factors. Thus, we consider in each case how a given child's impairment(s) affects him or her, irrespective of age. New paragraph (d)(1) also explains what we mean by a child's ability to "adapt" to an impairment(s).
In final paragraph (d)(2), we incorporate the provisions of § 416.924b(d)(3) of the prior rules with minor editorial clarifications. In final paragraph (d)(3), we combine into a more logical presentation the provisions beginning with the second sentence of § 416.924b(d)(1) (with minor editorial changes) through § 416.924b(d)(2) of the prior rules.
In new paragraph (d)(4), we state more clearly the principle from the prior rules that the age-appropriate functional abilities, skills, and behaviors of older adolescents (i.e., children aged 16 to 18) are the same as those that are appropriate for 18-year-olds. Therefore, the disability determination for an older adolescent must be consistent with the disability determination we would make for an 18-year-old having the same functional limitations.
We explain all of the foregoing changes and clarifications in the public comment section of the preamble.
Section 416.924b Functioning in Children
Pursuant to the reorganization described above, this section emphasizes the important principles that we consider all of a child's impairment-related mental and physical limitations and the extent to which the child is able to engage in age-appropriate activities on a sustained basis when we assess functioning at steps 2, 3, or 4 of the sequential evaluation process. It also now provides definitions of the terms we use when we describe functioning in children. Final § 416.924b(a), "General," was moved from § 416.924c(a) of the prior rules. Similarly, final § 416.924b(b), "Terms used to describe functioning," was § 416.924a(c) of the prior rules. To make clear that the terms "age-appropriate activities," "developmental milestones," "activities of daily living," and "work-related activities" apply at every step of the sequential evaluation process, and how the terms "domains" and "behaviors" apply at the last step of the sequence, we added the clause, "which we use when we perform an individualized functional assessment," to the first sentence of final § 416.924b(b)(5), "Domains and Behaviors." We changed the heading of final paragraph (b)(5) to
"Domains and Behaviors" to reflect all the functional areas in which we evaluate children. The "domains" pertain to a child's major spheres of activity (cognitive, communicative, physical, social/emotional, and personal/behavioral). The "behaviors" pertain to certain areas of behavior (responsiveness to stimuli; concentration, persistence, and pace). This change was needed to clarify language used later in final §§ 416.924d and 416.924e. Finally, in response to a comment, we deleted from the first sentence of final § 416.924b(b)(5) the phrase, "development or", and added a new fourth sentence which explains that the domains and behaviors include all of a child's functioning at any particular age, a new fifth sentence which explains that all effects of a child's impairment(s) on daily functioning will be considered within the domains and behaviors, and a new sixth sentence which explains that the presence of pain or other symptoms can adversely affect functioning in the domains or behaviors.
In final § 416.924b(b)(2) and (3), we have changed the age ranges we refer to when we use the terms "developmental milestones" and "activities of daily living." The final rules now state that the term "activities of daily living" refers to children aged 3 to 16 (instead of 6 to 18) and that the term "developmental milestones" refers to children from birth to age 3 (instead of birth to age 6). We also added a new paragraph (b)(4), "Work-related activities," for older adolescents, which we had inadvertently omitted from the prior rules, and revised the age references in final paragraph (b)(5) to be consistent with the foregoing revisions. We made these changes in response to a comment that pointed out inconsistencies between these sections and final § 416.924d, "Individualized functional assessment for children"; therefore, the corrections were necessary. They do not represent new policies, but merely make the rules consistent. The changes also respond to several comments that expressed concern about the terms we use to describe functioning in younger children. We explain this comment and provide more detail about our reasons for making the revisions in the public comments section of the preamble.
Section 416.924c Other Factors We Will Consider
This section discusses factors that may be relevant to how an impaired child is able to function and, therefore, that may be relevant to the evaluation of functioning at any step of the sequence. Pursuant to the reorganization of the rules, and for reasons we have already discussed, we therefore revised the section heading and § 416.924d(a) of the prior rules (final § 416.924c(a)), "General," to delete references to the individualized functional assessment and to make the applicability of the rules clearer.
In § 416.924d(b) of the prior rules (final § 416.924c(b)) "Chronic illness," we added a new first sentence and revised the prior first sentence (now the second sentence) and the prior second sentence (now the third sentence) in response to several comments. The revisions clarify our original intent that this section is intended to provide guidance for the evaluation of chronic, episodic impairments.
In a technical correction, we deleted the phrase, "for children with similar needs," from the second sentence of § 416.924d(d) of the prior rules (final § 416.924c(d)), "Effects of structured or highly supportive settings." We did this because some special classrooms may involve heterogeneous groupings, and not only accommodate children with similar needs.
In response to a number of public comments, we revised and reorganized § 416.924d(e) of the prior rules (final § 416.924c(e)), "Adaptations," to make our original intent clearer. The revisions provide that some adaptations may enable a child to function normally or almost normally, whereas other adaptations may increase the child's ability to funtion but the child will still have limitations. We deleted the reference to adaptations that may themselves impose limitations in response to a comment which pointed out that the statement was inaccurate. However, we retained all of the parenthetical examples except for the example of "sleep."
In § 416.924d(f) of the prior rules, (final § 416.924c(f)), we changed the heading of the paragraph from "Multidisciplinary therapy" to "Time spent in therapy", in response to a comment. In the first sentence, we changed the phrase, "more than one kind of health care professional" to "one or more kinds of health care professionals" to indicate that even one kind of therapy may be very time-consuming. In the second sentence, we deleted reference to "multidisciplinary therapy" and now state simply that therapy may include the various kinds of services mentioned in the sentence. In the last sentence, we replaced the clause, "you have an impairment(s) of comparable severity to an impairment(s) that would disable an adult," to "you can function independently, appropriately, and effectively in an age-appropriate manner," because the prior language suggested that the factor of multidisciplinary therapy would be considered only at the fourth step of the sequential evaluation process. We explain these changes in more detail in the public comments section of this preamble.
In § 416.924d(g) of the prior rules, (final § 416.924c(g)) "School attendance," we added the clause "when it is relevant and available to us" to the end of the second sentence. In the second sentence of final § 416.924c(g)(2), we added the word "regular" before the word "classroom," and the words "appropriately, and effectively" to the phrase, "to function independently." All of these revisions were responses to comments, and they ensure that the provisions more accurately describe our original intent and practice. In final § 416.924c(g)(3), we added the phrase, "independently, appropriately, and effectively" after "to function."
We explain all of the foregoing revisions in more detail in the public comments section of the preamble.
Section 416.924d Individualized Functional Assessment for Children
This section discusses the fourth step of the sequence for children, at which we must do an individualized functional assessment to determine whether a child whose impairment(s) is severe, but which does not meet or equal in severity the requirements of a listed impairment, has an impairment(s) which is of comparable severity to one that would disable an adult.
Section 416.924a(a) of the prior rules, "General," (final § 416.924d(a)) remains unchanged except that we have updated the cross-references following the third sentence to reflect the reorganization of the rules.
We added a new § 416.924d(b), "Responsibility for individualized functional assessment," in response to a comment that pointed out that we had identified adjudicative responsibility for equivalence determinations (in § 416.926a(c)) but had omitted a similar provision for the individualized functional assessment; we also have a similar provision in § 416.946 describing responsibility for the adult residual functional capacity assessment. As we explain in more detail in the response to the comment, the omission of the provision was an oversight, and the language we have added is adopted from §§ 416.926a(c) and 416.946 and reflects our current policies. Therefore, the new paragraph is not a new rule; we are merely adding it to fill a gap in the rules and for consistency with other, similar provisions.
As already noted, we have redesignated § 416.924c(a)(2) through (g) of the prior rules, as final § 416.924d(c) through (j). We have also made minor heading changes and redesignations for clarity. Thus, we provided a heading, "Domains of development or functioning," to final § 416.924d(c) because § 416.924c(a)(2) of the prior rules, from which it was adopted, had no heading. We also renumbered subsections (i) through (vii) as (1) through (7). Section 416.924c(a)(3) of the prior rules, which also had no heading, is now (with minor text changes) final § 416.924d(d), "How we use the domains," and § 416.924c(a)(3), (4), and (5) of the prior rules is redesignated as final § 416.924d(d)(1), (2), and (3). Finally, we redesignated the remaining § 416.924c(b) through (g) of the prior rules as § 416.924d(e) through (j).
In § 416.924c(a)(5) of the prior rules (final § 416.924d(d)(3)), we have added a cross-reference to § 416.924a(a)(5) for the guidelines on age and a child's ability to be tested.
In § 416.924c(b) through (g) of the prior rules (final § 416.924d(e) through (j)), which are the paragraphs that describe the domains and behaviors for each of the age categories, we made some additions and revisions to the language of the general descriptors and examples of children's functioning in each age group. These additions were made in response to suggestions by experts in professional child development, health, and disability who submitted comments to us. None of the additions represents a substantive change in the descriptors; rather, they simply enhance the descriptors so that they are more detailed and inclusive. The specific improvements are discussed in detail in the public comments section of this preamble.
In addition to the changes to final § 416.924d made in response to public comments, we made a few technical corrections. In final § 416.924d(e)(5), we rephrased the descriptor for greater clarity. In final §§ 416.924d(f)(5) and 416.924(g)(5), we changed the word "or" to "and" in the sentences that constitute each of the provisions so that the example of personal/behavioral development reads, "* * * your ability to help yourself and to cooperate with others in taking care of your personal needs * * *." This change was needed because the disjunctive "or" suggested that a child's self-care behavior would be normal if he or she could cooperate with another person in meeting personal needs, even if the child could not help himself or herself to meet those needs.
In another technical correction, we deleted the term "self-control" from final § 416.924d(g)(4) because that behavior is more appropriately addressed under personal/behavioral functioning in a new phrase, "responding to limits," which is explained in the response to comments below. We also deleted the phrase, "and self-care," in final §§ 416.924d(h)(3) and 416.924d(i)(3) because the activities involved in self-care were inappropriately placed under the motor domain and are already addressed explicitly under the domain of personal/behavioral functioning. In final § 416.924d(h)(5), we changed the statement, "to understand authority relationships and school rules," to "to respond appropriately to authority and school rules," in order to make this language the same as the language in final § 416.924d(i)(5). Moreover, the statement better focuses the descriptor on the child's observable behavior rather than his or her subjective understanding. Similarly, in final §§ 416.924d(h)(5) and 416.924d(i)(5), we changed the word "develop" in the prior statement, "develop a sense of responsibility for yourself and respect for others," to the word "manifest," again to focus on the child's observable behavior.
The final technical corrections were in final § 416.924d(j)(2). We replaced the phrase, "an indication of," in the fourth sentence, the phrase, "some indication of," in the fifth sentence, and the phrase, "as it relates to," in the eighth sentence, with the phrase, "as evidence of." This change makes the language of the three sentences consistent with the other sentences in the paragraph. The change is only editorial and not substantive; we were concerned that, without the change, our intent in using different language in the sentences might have been questioned, when in fact we had no special reason for using different words.
Section 416.924e Guidelines for Determining Disability Using the Individualized Functional Assessment
This final section is substantively the same as the corresponding section in the prior rules. In final § 416.924e(a), "General," we revised the clause following the semicolon in the second sentence. We made the revision in response to comments that asked us to use the third part of the basic definition of disability for children contained in § 416.924(a) wherever possible in these rules because it refers specifically to children. Because we agreed with the commenters, we revised the clause to say that the guidelines illustrate an impairment or combination of impairments that "substantially reduces your ability to function independently, appropriately, and effectively in an age-appropriate manner." Inasmuch as this is our regulatory definition of disability, it is not a substantive change from the prior rules but a clarification.
In final § 416.924e(b), "How we describe functional limitations," we made a technical correction, changing the word "impairments" in the second sentence to "limitations." The change merely corrected an error: In context, the sentence plainly refers to moderate "limitations" resulting from impairments, not a person's medically determinable impairments. Moreover, we use the word "limitations" in the same context later in the sentence and in the third sentence of the paragraph. We added the phrase, "in a domain or behavior," to the end of the next-to-last sentence and after the word "functions" in the last sentence of paragraph (b) in response to a comment which said that the addition of this language from the preamble (56 FR at 5542) would make the sentences clearer. We made similar additions to the second and third sentences of paragraph (b)(1), and to paragraphs (c)(2)(i) and (ii) and (d)(2).
In paragraph (b)(3), we added cross-references to §§ 416.968 and 416.969a to the second sentence; the former reference was inadvertently omitted from the prior rules, while the latter reference was published subsequent to the prior rules (in the final rules on the evaluation of symptoms, including pain, 56 FR 57947, November 14, 1991). Finally, we revised cross-references throughout § 416.924e(b) to reflect the reorganization of the rules.
In response to many comments, we added to final § 416.924e(c)(1), "Young children (birth to the attainment of age 3)," and § 416.924e(c)(2), "Older children and young adolescents, age 3 to attainment of age 16," the same guidance we provide in § 416.924e(d)(1)(ii) for older adolescents; i.e., that the guidance in the examples is not a standard by which all cases must be judged, and that each case must be evaluated on its own merits using the principles and guidelines of all the childhood disability rules. We also revised cross-references throughout both sections to reflect the reorganization.
In final § 416.924e(d), "How we evaluate older adolescents, from age 16 to attainment of age 18," we deleted the words "severity for" from the former heading. This is a technical correction to make the heading of the paragraph consistent with the language in the headings of paragraphs (c)(1) and (c)(2) of the section. In response to a comment that we had not mentioned the domains of functioning in this section, we added clauses referring to the relevant domains to the opening sentences of paragraphs (d)(2), "Mental functions," and (d)(3), "Physical functions." In paragraph (d)(4), we added two provisions, designated (d)(4)(i) and (d)(4)(ii), in response to a comment that said we should define the term "substantial loss or deficit," which we use in paragraph (d)(4). The new provisions derive from the rules in final §§ 416.924(a)(3) and 416.924e(d)(1), and adopt language from our manual instructions. Finally, we revised the cross-references throughout this section to conform to the reorganization of the rules.
We explain the provisions in § 416.924e(d)(4) and all of the foregoing changes in more detail in the public comments section of this preamble.
Section 416.926a Equivalence for Children
In response to public comments, we revised the final rules on functional equivalence to strengthen their concepts and make them clearer. Thus, we added clarifying language to § 416.926a(b)(3), the section that describes "functional equivalence." In this section, we restate the principles that we will consider the combined effects of all of a child's impairments and that, for purposes of the "functional equivalence" determination, the child's impairment(s) need not be medically related to the listing we choose for comparison. We also revised several of the sections in paragraph (d), "Examples of impairments of children that are functionally equivalent to the listings," to underscore the policy that the list of examples is not all-inclusive.
We also made three technical revisions. First, in paragraph (c), we added the phrase, "of the Secretary," after "other designee" in the first sentence in order to parallel the language in § 416.924d(b) regarding responsibility for the individualized functional assessment. Second, we added a statement in paragraph (d) that the statutory duration requirement must still be applied to the examples, and we deleted the statement, "lasting or expected to last 12 months," from former examples (3) and (9) (final examples (3) and (7)). Our inclusion of the phrase in these two examples in the prior rules could have suggested that the duration requirement applied only to those two examples. Since the duration requirement is a basic requirement of the statute, however, our intent and practice have always been to apply it to all of the examples. We conclude paragraph (d), therefore, with cross-references to §§ 416.909 and 416.924(a). Third, in final example 11 we have added the clause, "and the impairment is expected to be disabling (because of residual impairment following surgery, or the recovery time required, or both)," after the words "surgical correction," to make the meaning of the example clear. The additional language is, again, designed to underscore the need to satisfy the statutory duration requirement.
In addition, we deleted three examples in response to comments (examples 4, 6, and 15 in the prior rules) either because they illustrated a severity level greater than is required to meet or equal the listings or could have been viewed as redundant of other examples. We also revised several of the examples to clarify that they apply to physical impairments or combinations of physical and mental impairments. We explain all of these revisions in detail in the public comments section of this preamble.
Section 416.928—Symptoms, Signs, and Laboratory Findings
In response to several comments that asked us to provide a specific provision to address the special problems some children have in articulating their symptoms, we have added a new second sentence to § 416.928(a), "Symptoms." The new sentence explains that we will accept a description from the person who is most familiar with the child as a statement of symptoms of a child who is unable to adequately describe his or her symptoms. We explain our reasons for this addition in greater detail in the public comments section of this preamble.
Section 416.994a How We Will Decide Whether Your Disability Continues or Ends, Disabled Children
This section provides the medical improvement review standard rules for children. We retained the entire section as published in the prior rules, with one clarifying text revision, which we added in response to a comment. In § 416.994a(d)(2), "Previous decision based on an individualized functional assessment," we added language to the second sentence which clarifies that we will take into consideration any current medical findings or functional limitations related to the previously existing impairment when we do the new individualized functional assessment based on impairments that existed at the time of the most recent favorable decision. We explain the reasons for this additional language, and our responses to the other comments about this section, in the public comments section of this preamble.
We also revised all of the cross-references consistent with the reorganization of the rules.
Subsequent to the publication of the Final Rule with Request for Comments in the FEDERAL REGISTER (56 FR 5534) on February 11, 1991, we received 44 letters from 42 different sources commenting on the new childhood disability rules. In a number of cases, which we describe below, we received the same comment and recommendations from several commenters; in nearly every case in which this happened, the comments and recommendations used identical or nearly identical language.
Most of the comments came from advocacy and legal groups that represent children with disabilities. Other comments came from people and organizations representing children with specific diseases, disorders, or health problems, and from professional medical and health care organizations. Some of the commenters had specialized backgrounds in pediatrics, psychiatry, communication disorders, and other specialties involving child health and disabilities. We also received comments from several public agencies and professional organizations having an interest in these rules.
The comments on the rules were generally favorable. By far, most of the comments asked us to strengthen, expand, or clarify principles in the rules, or to add even more rules. These comments, which were submitted within the first few months after promulgation of the prior rules, were often expressed in terms of predictions and fears that the new rules would not be applied properly.
In a number of instances, we adopted the comments because we agreed with the commenters that the rules could be clarified or strengthened. However, in many instances we did not adopt the comments that predicted misapplication unless we revised the rules. This is because we now have more than one-and-one-half years' experience using the rules and closely monitoring their use. Based on our experience using the rules, and our monitoring of the implementation of the rules, we are able to state with confidence that the potential problems that concerned the commenters did not materialize or were dealt with swiftly through quality reviews, careful training and the instructions we provided to our adjudicators on the implementation of the rules. Therefore, even though many of the comments that we did not adopt were well thought out and earnestly presented, it transpired that there was no need to make the changes suggested.
Some of the comments did not pertain to the new childhood disability rules. We have not addressed those comments in this preamble, but have referred them to the appropriate components of SSA. Finally, because a number of the comments were quite long and detailed, we had to condense, summarize, or paraphrase them. However, we have tried to express everyone's views accurately and to respond to all of the relevant issues raised by the commenters.
Section 416.903 Who Makes Disability and Blindness Determinations
Comment: One commenter pointed to the absence from the regulation of the provision of Pub. L. 101-508, section 5036, now codified at § 1614(a)(3)(H) of the Act (42 U.S.C. § 1382c(a)(3)(H)). Section 1614(a)(3)(H) states, in pertinent part, that, "In making any determination under this title with respect to the disability of a child who has not attained the age of 18 years * * *, the Secretary shall make reasonable efforts to ensure that a qualified pediatrician or other individual who specializes in a field of medicine appropriate to the disability of the child * * * evaluates the case of such child." The commenter noted that the requirement in the law obviously legitimizes the same policy position stated in our manual instructions; however, the absence of this provision in the regulation creates a serious discrepancy.
Response: We agree with the commenter and have addressed the requirements of § 1614(a)(3)(H) by incorporating the appropriate language of Pub. L. 101-508 in §§ 416.903(f) and 416.1015(e).
Section 416.913 Medical Evidence of Your Impairment
Comment: One commenter made suggestions for specific language changes in § 416.913(e). The commenter recommended that we add the phrase, "and to perform age-appropriate daily activities," at the end of the first sentence of § 416.913(e) so that it would be identical to the language in § 416.913(c)(3). The commenter also recommended that in § 416.913(e)(2) we change the phrase "non-medical sources" to "people who know you" to be more accurate, and add "other caregivers" at the end of that section to be more inclusive. Finally, the commenter recommended that in § 416.913(e)(3) we change the word "practitioners" to "medical sources."
Response: We adopted or accommodated some, but not all, of the recommendations. We agree that the language in the opening paragraph of § 416.913(e) should be consistent with § 416.913(c)(3). But instead of adding the phrase "and to perform age-appropriate daily activities" to the first sentence of § 416.913(e), we deleted it from § 416.913(c)(3), where it was redundant. The prior wording of § 416.913(c)(3) implied that we were making two separate determinations: one about the child's ability to function in an age-appropriate manner and another about the child's ability to perform age-appropriate daily activities. In fact, only one determination is made. We use information about how a child performs age-appropriate daily activities to evaluate whether the child can function independently, appropriately, and effectively in an age-appropriate manner.
We adopted both of the comments about § 416.913(e)(2) by replacing "non-medical sources" with the phrase, "people who know you," deleting the word "and" after "neighbors," and adding the phrase, "and other caregivers," after "parents." We did not adopt the recommended language change in § 416.913(e)(3). Under § 416.902 of our current rules (as revised in the "Standards for Consultative Examinations and Existing Medical Evidence," 56 FR 36932, which we published on August 1, 1991, after the close of the comment period for these rules), the term "medical source" is a term of art that has a different meaning than "practitioner." We are, therefore, unable to make the change.
Comment: One commenter suggested that if we intend to revise § 416.913(a) to include licensed or certified school psychologists as "acceptable medical sources," the revision should be made in these final regulations.
Response: We did not adopt the comment. We have decided that there is no need to revise § 416.913(a)(3) because it provides that we will recognize as acceptable medical sources any licensed or certified psychologists; this includes licensed or certified school psychologists, who are acceptable medical sources for the documentation of mental retardation or learning disabilities. However, because school psychologists are not acceptable medical sources for all mental impairments, we have retained the reference to "school psychologists who are not acceptable medical sources under paragraph (a)" in § 416.913(e)(5) of the final rules.
Comment: One commenter remarked that school-age children in New Jersey for whom a Child Study Team (CST) evaluation has been done in a local school district may enjoy some advantage in obtaining SSI benefits because that evaluation will provide the kinds of evidence needed to pursue a child's disability claim. On the other hand, the commenter noted, the parents of impaired preschool children, especially those between birth and age 2 who do not qualify for the CST evaluation, may need assistance in arranging the proper protocol of mental and physical examinations necessary to document the eligibility of their children under the proposed final rule. The commenter recommended that we develop specific guidelines to assist these parents in obtaining the diagnostic instruments that are acceptable to SSA in making such disability determinations.
Response: Such rules are unnecessary because we assist children in documenting their claims. Under § 416.912(d) of our rules, before we may make a determination that a child is not disabled, we are required to make every reasonable effort to develop the child's medical history for at least 12 months preceding the month in which the application is filed. This means that we may either assist the child and his or her parents or other caregivers in obtaining existing evidence or actually obtain the evidence for the child—provided, of course, that we have permission from the person who is pursuing the claim on behalf of the child or the person who has the authority to give us this permission. In addition, if the available evidence is not sufficient to support a decision on a claim, we may purchase the needed information—including, if necessary, the kinds of tests and evaluations to which the commenter referred—through the consultative examination process. Therefore, we do not believe that the children about whom the commenter was concerned will be disadvantaged.
Section 416.916 If You Fail To Submit Medical and Other Evidence
Comment: Several commenters believed that our revision of § 416.916 did not go far enough to address the particular problems that children may face in providing evidence. They described a number of problems and situations unique to child claimants, which they thought we should address in regulations. One commenter would have liked to see either modification of the regulations or clear guidelines, presumably in our manual instructions.
Other commenters noted that the March 14, 1991, Stipulation and Order of the United States District Court for the Eastern District of Pennsylvania (the court to which the case was remanded after the Supreme Court decided Zebley) requires SSA, in readjudicating the cases of Zebley class members, to "make special efforts to assist children in documenting eligibility and * * *, in cases of non- cooperation, [to] make special efforts to locate an adult person responsible for the child's care and * * * not terminate, deny, or disqualify the child until a personal contact with his family or custodian has been attempted." The commenters thought that we should accord all child applicants at least the same consideration that Zebley class members receive.
Response: We do not believe that there is good cause for publishing the recommended changes without first publishing a Notice of Proposed Rulemaking (NPRM). We are seriously considering whether to publish an NPRM on the subjects raised by the commenters. We believe that we would receive opinions on both sides of the issue, and that, therefore, publication of a final rule now would be contrary to the public interest. We will, however, consider all of the commenters' concerns and suggestions if we decide to publish an NPRM.
Comment: One commenter recommended that the regulations acknowledge that some of the responsibility for gathering school records be assigned to the Social Security District Offices. The commenter said that municipal budget cuts in school systems are affecting the support staffs in special education departments where school records for many child claimants are held. The staffs of these departments often do not have the capacity to respond to many requests and to send us the school records we need. The commenter also said that, for a number of reasons, parents may have difficulty in obtaining records from their children's schools and was concerned that we not consider this difficulty to be noncooperation.
Response: While we appreciate the difficulty some school districts may have in complying with our requests for records, we do not believe it is appropriate to instruct our Field Offices to secure this information in the manner suggested by the commenter. Each school district would have to agree to give SSA employees access to their records, which some may not be willing or able to do. Additionally, some Field Offices do not have sufficient staff to obtain these records in the manner the commenter suggested. Therefore, decisions about using Field Office or State agency personnel to develop school or other evidence will have to be made on a local level, as they are now.
With regard to the last comment, we believe that we made clear in an earlier response that we do not generally require parents to obtain and bring evidence from other sources to us.
We make every reasonable effort to assist children and their parents by trying to obtain evidence for them, provided that we have permission to do so. Therefore, we do not consider a parent's inability to obtain evidence to be noncooperation.
Section 416.924 How We Determine Disability for Children
Comment: We received two comments about our use of a standard of "comparable severity" to define disability in children in § 416.924(a). The commenters thought that the basic definition of "disability" in § 416.924 ("* * * an impairment or combination of impairments that is of comparable severity to an impairment or combination of impairments that would disable an adult") was a problem because an adult's disability should not serve as the standard for children. One commenter suggested that we strike the language in § 416.924(a), and throughout the remainder of the rules regarding comparable severity to that of an adult.
Response: We have accommodated the comments, even though we have not adopted the specific suggestions. As we explained in the preamble to the prior rules (see 56 FR at 5534 and 5537), the standard of "comparable severity" is derived from the language of section 1614(a)(3)(A) of the Act. For this reason, we have included it in our rules.
Nevertheless, we agree with the commenters that the adult standard of disability, based on the ability to work, should not serve as the standard for evaluating a child's disability without translation into terms that are meaningful for childhood claims. This is why the definition of disability in § 416.924 is divided into three parts, each progressively more detailed and progressively more specific to children. In the first part of the definition, we repeat the statutory definition because it is the benchmark set by the law and we are required to follow it. In the second part of the definition, however, we further define "comparable severity" in terms appropriate to children (i.e., the ability to function independently, appropriately, and effectively in an age-appropriate manner) although—as the second commenter noted—we ultimately return to the "comparable severity" language of the law. Finally, in the third part of the definition, we elaborate the first two parts in a more detailed explanation of what it means to be disabled as a child; that is, to experience a substantial reduction of ability to function age-appropriately. The three parts of the definition are not meant to be read separately, but together as a totality defining "comparable severity."
To emphasize that we have translated the principle of "comparable severity" into terms relevant to children, and in response to both comments, we have removed language in final § 416.924(f)(1) and (2), which referred to "comparable severity," and have substituted language from the second and third parts of the definition, which speaks of the substantial reduction of a child's ability to function independently, appropriately, and effectively in an age-appropriate manner. For the same reason, we made a similar change in the second sentence of final § 416.924e(a).
Comment: One of the foregoing commenters also believed that a number of the definitions of terms in the childhood disability regulations needed to be expanded or changed. The commenter thought that the definitions of "impairment," "disability," and "handicap" published in the American Medical Association's Guides to the Evaluation of Permanent Impairment could serve as a starting point, and offered to work with us in formulating definitions for the childhood disability regulations.
Response: Although we appreciate the commenter's offer of assistance in developing terms to describe our program concepts which would conform to usage by other programs, we did not adopt the comment. Many of our terms are terms in the statute and regulations that we adopted for consistency in the new regulations for children. For example, and as we explained above, the basic definition of "disability" for children in § 416.924 is taken from the statutory definition of the term. Similarly, the statute contains a specific definition of the term, "physical or mental impairment" in § 1614(a)(3)(C) of the Act. The term "handicap" would have no meaningful place in our program, inasmuch as the Act does not recognize degrees of disability. Thus, we do not believe that we would be able to make the kinds of changes in the definitions of our terms suggested by the commenter. Furthermore, any changes we could make to definitions of terms shared by the childhood and adult rules would require changes in the adult rules as well and would, therefore, be beyond the scope of these rules.
Comment: We received comments from 17 commenters, many with identical language, about the clause in § 416.924(a) of the prior rules, "or if you are an infant from birth to the attainment of age 1, be reasonably expected to substantially reduce * * *." Most of the commenters seemed to believe that the sole purpose of the provision was to provide guidance for the evaluation of the children who are too young for certain tests. Most commenters also seemed to understand that the language of the rules permitted adjudicators to make informed judgments of the likely effects of impairments and, hence, of the likelihood of disability.
All of the commenters thought that we should change the former reference to age 1 to a later age, saying that many children will be difficult to test even if older than 1 year. Several of the commenters stated, in identical language, that this limitation would "continue arbitrary denials to children over one who remain too young to test." They pointed to Listings 102.02 (for vision), 102.08 (for hearing), and 101.03 (for walking), as being especially difficult for small children to meet. Several of the commenters also said that, because of this, the clause either violated the Supreme Court's decision in Zebley or was not supported by the decision. One commenter noted that it was not only a child's very young age, but also the nature of the child's condition that might preclude formal testing.
Several commenters asserted that they were unaware of any medical basis for our choice of age 1. Another commenter observed that not every child will be developmentally affected by a particular disability by the attainment of age 1, and that not all severe physical disabilities will manifest themselves in developmental terms by age 1. In addition, several commenters offered comments to the effect that, in the case of some conditions, parents may not be given a diagnosis until their child is age 4 or 5, despite evidence of developemental delay.
One commenter wanted us to extend the age limit of the provision to 6 years for several reasons. The commenter said that, given the rapid development of young children, childhood specialists find it difficult to assess adequately and accurately the functional limitations of children under 6 years of age. Often, a child may manifest symptoms and conditions in infancy or early childhood that may improve or deteriorate by a later age. Adjustment of the "reasonable expectation" standard to 6 years of age would allow children who appear to suffer from limitations that cannot actually be tested with a "presumption" of disability that can be later reviewed at the continuing disability review stage. On the other hand, another commenter—discussing the physical impairment of cystic fibrosis—said that, if a child is given an individual functional assessment and not immediately denied benefits, the restriction to age 1 may be acceptable.
Response: We have deleted the entire clause in response to the comments. We also added a new provision to the rule that discusses age, § 416.924a.
Our original intent in the statement, "or if you are an infant from birth to the attainment of age 1, be reasonably expected to substantially reduce," was to provide a special consideration for the very youngest children, whose medical conditions might be difficult to diagnose, or whose specific functional problems might be difficult to ascertain, because their very young age precludes accurate medical or standardized testing. We reasoned that a judgment might be required on the basis of all available evidence whether a child's impairment(s), even though not diagnosable or not amenable to specific medical testing (such as central visual acuity), were demonstrated to be disabling and could be reasonably expected to remain disabling.
We did not choose age 1 arbitrarily or as a cutoff point, but for several reasons that seemed reasonable and valid:
First, and foremost, we thought that children under age 1 could be viewed as a special case with respect to the statutory duration requirement that an impairment "must have lasted or be expected to last for a continuous period of not less than 12 months."
Second, there was considerable interest on the part of the experts that we provide special considerations—the "benefit of the doubt"—for the youngest infants, particularly those under age 1. We believed that this provision would address those concerns.
Third, and as we have explained in the preamble to the publication of the final childhood mental listings (55 FR 51227, December 12, 1990), we do not entirely agree with the commenters who said that there is no medical basis for choosing age 1 in a rule for children who are not always amenable to testing. Even though we agree that the problems of testing can, and often do, persist beyond age 1, they become less and less of a factor for our program purposes, especially under these rules, as children get older, even by ages 2 or 3.
After more than one-and-one-half years of adjudicatory experience, however, we now realize that the clause could have been unclear (as shown by several of the comments). The reason it could have been unclear is that it seemed to state a principle that was somehow different from our normal policies; i.e., it seemed to say that, even though we do not ordinarily consider whether an impairment that has not yet lasted for 12 months will last for at least 12 months, we would make an exception for infants. This, of course, is not the law or our policy. We often make reasoned decisions predicting duration based on the available evidence, knowledge of the course of an impairment, and other informed judgments in both childhood and adult claims.
Consequently, we decided to delete the language from the rule. As a result, we did not adopt the first two of the three language revisions suggested by the commenters. The commenters first recommended that we delete the first part of the clause, "or if you are an infant from birth to the attainment of age 1," from the third sentence of § 416.924(a) of the prior rules leaving only the statement, "or * * * be reasonably expected to substantially reduce * * *." In our view, the lack of reference to any age category (even to the categories that include the children who are too young to be tested) would have made the statement seem contrary to the statute; as we have said, the reasonable and acceptable interpretation of the language (i.e., that it referred to a child who has already demonstrated a disability save for the duration requirement) is a fundamental part of disability evaluation for all people under the Act and regulations.
The second proposed change also had the same problems. The commenters proposed that we revise the second sentence of § 416.924a(a) of the prior rules (final § 416.924d(a)) to add the words "or potential" in the following context: "When we assess your functioning, we will consider all information in your case record that can help us determine the impact or potential impact of your impairment(s) * * *." We believe that this language is still sufficiently ambiguous that it could be misinterpreted. In any case, we believe that it does not provide any additional policy or substantive clarification to warrant its inclusion.
We therefore believe that deleting the passage is the best way to respond to the comment. Moreover, the deletion carries the advantage that it removes the reference to an upper age limit and permits the principles to be used with any child of any age who may be untestable.
Even with the deletion, there are still several, far more substantive, provisions that address the problems of children who are too young to test in these rules. In a more general way, the entire body of the rules protects such children. The comment about the physical impairment, cystic fibrosis, was on point: The fact that with these rules we can find a child disabled based on an individualized assessment of his or her functioning takes precedence over whether it is possible to diagnose exactly what is wrong with the child or the extent of loss of such functions as vision or hearing. We were frankly surprised at the number of commenters who submitted the comment that pointed out the importance of being able to test children in order to find out whether their impairments meet Listings 102.02, 102.08, and 101.03. The whole point of the Zebley decision and of these rules is to provide ways to establish disability in children whose impairments do not meet (or equal) any listing.
More specifically, the policy of functional equivalence provides a direct method for finding disabled infants and young children who have listing-level impairments manifested only by functional limitations; it is plainly a rule for children who, for any reason, cannot be appropriately tested. Beyond the listings step, the rules in final §§ 416.924d and 416.924e provide methods for establishing disability in such children based on an individualized assessment of their functioning. Again, it is not necessary to quantify the degree of visual or auditory functioning when there is poor bonding or lack of responsiveness to stimuli; or whether a child's failure to thrive and chronic cough are the result of cystic fibrosis; or whether a child's failure to thrive and poor social responsivity are the result of an emotional disorder of infancy. We need only know that there is a medically determinable impairment and how it affects the child's functioning—and, of course, that it has lasted or, based on our review of all the evidence and informed judgment, can be expected to last for at least 12 months.
More specifically still, final § 416.924d(a) (§ 416.924a(a) of the prior rules) explicitly states that we will consider a child's ability to be tested:
When we assess your functioning, we will consider all information in your case record that can help us determine the impact of your impairment(s) on your physical and mental functioning. We will consider the nature of your impairment(s), your age, your ability to be tested given your age, your ability to perform age-appropriate daily activities, and other relevant factors.
Finally, one of the most important provisions in these rules, which we believe goes to the heart of the comparability standard, is the age provision in final § 416.924a(d) (§ 416.924b(d) of the prior rules). In this section, we provide detailed guidance for the kind of special consideration that must be given to the effects of impairments on small children.
We do find helpful, however, part of the third suggested revision submitted by the commenters, although we believe that it should be given an even broader application than the commenters suggested. The commenters recommended that we add two sentences to the section on the role of age in determining whether an impairment equals a listing, in § 416.924b(a)(2) of the prior rules (final § 416.924a(a)(2)): We will also consider your age and how it affects your ability to be tested. In cases where you are too young to test, we will make equivalence determinations of present disability based on available evidence, medical knowledge of the course and early signs of impairments and informed clinical judgments.
Aside from the obvious problem that discussions of equivalence and age may more properly belong under final § 416.924a(a)(3), we believe that the first of the proposed sentences has more general applicability. We, therefore, did not want to make the statement only in the context of a discussion of the listings step because it might obscure our intent. However, we also agree that this particular paragraph of the rule on age is an ideal location for stating plainly the policy we have been applying since we first published the prior rules: We consider a child's ability to be tested at every step of the sequential evaluation process. For this reason, we have added a new subparagraph (5) at the end of final § 416.924a(a) which states that in any determination we will consider a child's age and whether it affects the child's ability to be tested. Even when a child's impairment(s) is not amenable to formal testing because of age, we will consider all evidence that will help us decide whether a child is disabled.
For reasons which should be apparent from all of the foregoing discussions, we were unable to adopt the second proposed sentence. The proposed language, in fact, simply describes a good disability determination, one that considers all the available evidence, and that employs knowledge of the course and signs of impairments, and informed judgment. We believe that this new language offers the protection that the commenters sought, and that we originally intended, for children who are too young to be tested.
Section 416.924(c) If You Are Working
Comment: One commenter noted that the first step of the sequential evaluation process for determining whether a child is disabled involves proof that the child is not engaging in substantial gainful activity (SGA). The commenter said that because children, unlike adults, do not engage in work activity, the adult rules should not be used to determine whether a child is engaging in SGA. The commenter said that we should ask whether the child is engaging in "substantial child-like activities." The commenter went on to say, "In the context of a child, substantial gainful childhood activity means the ability to engage in such activities as, but not limited to, rolling, sitting, or crawling, at a level comparable to the child's age group."
Response: The definition of disability in section 1614(1)(3)(A) of the Act applies to both adults and children. Although most children do not work, there are those who do, particularly among older adolescents. The determination at the first step of the sequential evaluation process does not consider a child's abilities; it asks whether the child is actually working. If a child is actually engaging in substantial gainful activity, then he or she is not disabled. However, we believe that the remainder of the sequential evaluation process is consistent with the commenter's recommendation: The degree of the child's ability or inability to function in an age-appropriate manner ("at a level comparable to the child's age group," in the commenter's terminology) is at the core of the childhood disability evaluation process.
Section 416.924(d) You Must Have a Severe Impairment(s)
Comment: Some commenters said the Zebley decision provides no basis for a "severity" step in these rules, that it establishes a new barrier to eligibility, in violation of Zebley, and is enjoinable in district court. They said the Supreme Court's "limited approval" of the severity step for adults in Bowen v. Yuckert, 482 U.S. 137 (1987), did not approve application of the same step in child claims.
The commenters' overall concern was that the severity step would be used to deny children without an individualized functional assessment. There were particular concerns about children with multiple slight physical impairments, about children under age 5, and about children whose cases are difficult to evaluate.
There were various recommendations: that we eliminate the severity step altogether; that we eliminate it for a year and then evaluate implementation of the rules without it; and that we monitor implementation of the step and reevaluate its usefulness by some specified future date. There were also recommendations on revising the language in the severity step if it were to be retained, such as elimination of the phrase "more than minimal" or addition of the word "independently" after "function." Commenters also recommended that we adapt language from the preamble to the prior rules: "If the effect of your medically determinable impairment or combination of impairments is so minimal that it could not possibly be disabling, we will find that you do not have a severe impairment and are, therefore, not disabled."
Response: We did not adopt all the comments, but we have further clarified our rules, consistent with several of the commenters' proposed language changes. As we explained in the preamble to the prior rules (56 FR at 5538 and 5552), the severity step is consistent with the Act because it makes the whole childhood evaluation process more comparable to the adult process. Moreover,in Zebley, the Supreme Court noted that the "statutory standard for child disability is explicitly linked to [the] functional, individualized standard for adult disability." Zebley, 110 S Ct. at 890. The Supreme Court emphasized that the child and adult disability standards are to be read together so that "a child is entitled to benefits if his impairment is as severe as one that would prevent an adult from working." Id. Given the Supreme Court's recognition in Zebley that the childhood and adult disability standards are "explicitly linked" and the fact that the Supreme Court in Yuckert upheld the facial validity of the step for adult claims, we believe inclusion of a severity step is valid for children, who receive an evaluation process comparable to the one that adults receive.
We, of course, share the commenters' concerns that step 2 not be misused. Therefore, we have closely monitored its use over the more than one-and-one-half years since implementation of the prior rules. Our monitoring has shown that the step results in a denial of benefits in only a small percentage of cases, and that State agencies understand and apply the severity step correctly.
Although a formal individualized functional assessment is not required at step 2, we do consider each child's functioning at that step of the sequential evaluation process although not in precisely the same manner as we do at later steps in the sequential evaluation process. A denial based on a finding of nonseverity is proper only if it is clear that any impairment-related functional limitations are, at most, minimal or slight. We believe that the reorganization of the rules, which makes it clear that functioning is assessed at steps 2, 3, and 4 of the sequential evaluation process, and § 416.929(d)(1) of the current rules on the evaluation of pain and other symptoms (56 FR 57946, November 14, 1991) will help to underscore these principles.
To make this point even clearer, and to address the other concerns expressed by the commenters, we have now also revised final § 416.924(d) to reflect our longstanding interpretation in Social Security Ruling 85-28 ("Titles II and XVI: Medical Impairments That Are Not Severe"). That is, if a child's impairment is a slight abnormality or a combination of slight abnormalities that causes no more than a minimal limitation in the child's ability to function independently, appropriately, and effectively in an age-appropriate manner, we will find that the child's impairment(s) is not severe, and that the child is, therefore, not disabled. We believe that this revision will respond to the comments which asked us to clarify even further that "not severe" equates with "slight" or "minimal." The change also responds to concerns about our consideration of multiple impairments. It also responds to the comment that asked us to add the word "independently" before "age- appropriate activities"; we expanded the language to "independently, appropriately, and effectively" for consistency within the rules and because we think that comment speaks to all three aspects of functioning.
We have already explained why we believe the childhood disability rules will not disadvantage younger children. If the evidence shows that the child has more than a slight or minimal limitation in functioning as a result of his or her impairment(s), we will find that the child has a "severe" impairment(s). We do not need to know exactly how limited the child is in order for our evaluation to cross this threshold (as some commenters assumed); more precise assessments are needed only at the last step of the sequence.
We did not adopt the recommendations to delete the severity step or postpone its implementation during the first year after publication of the former rules, but we will, of course, continue to monitor its application and, if necessary, take corrective action. As noted above, we have made some of the recommended language changes so as to make the rules even clearer.
Comment: One commenter cited "error" rates through May 31, 1991 in six States as evidence of abuse of the severity step.
Response: The early rates cited by the commenter were not "error" rates; rather, they were cases returned to the State agencies following quality reviews, ordinarily to obtain additional evidence. These cases were considered to be "documentation returns," not "decisional errors." We have intentionally returned many cases for documentational deficiencies, including cases in which the adjudicator inadequately addressed an allegation in the rationale or did not properly explain a decision which was otherwise correct. Such errors do not represent cases in which it is likely that the decision itself is incorrect.
Thus, we strongly disagree with the assertion that these particular returns or any others represent "abuse" of the impairment severity step. As we stated in the prior response, we have carefully monitored the use of the step and at no time, even in the early months of implementation, have we found any patterns of misunderstanding or abuse. In fact, our quality reviews have shown that the rate of decisional errors in childhood cases using this step is very low. Notwithstanding the commenters' fears, we see no patterns that indicate adjudicators are misusing the severity step after more than a year-and-a-half of using the rules.
Comment: One commenter said the severity step appears to require a finding about the child's ability to function before a functional assessment is made.
Response: The commenter was partially correct. Functioning is considered at step 2, but in a less detailed way than at step 4, just as evaluations of the ability to do basic work activities at step 2 of the adult sequential evaluation process are less detailed than assessments of residual functional capacity. Such decisions do not require either consideration of whether the impairment(s) meets or equals in severity any listing, or the much more detailed individualized functional assessment that is required at step 4 of the sequential evaluation process.
Comment: One commenter said that the definition of "severe" in § 416.924(d) does not sufficiently allow for the effects of a disease like juvenile arthritis. For example, many children with juvenile arthritis are able to attend school and be in normal classes, but they arrive late every day because of acute joint inflammation. They have difficulty moving between classrooms and cannot participate in all activities. According to the commenter, studies have shown that children with juvenile arthritis have a higher than average absentee rate because of illness. As adults, they may be able to work but have difficulty finding an employer willing to accommodate their needs.
Response: We have not adopted this comment. Children who are frequently absent from school because of chronic impairments, who have difficulty walking (for instance, because of morning stiffness, even if it does resolve later in the day), and who cannot participate in all activities at school are limited in age-appropriate activities. Moreover, such children might well be disabled, depending upon the degree of their limitations. Based on our experience using the rules, we are confident that our adjudicators understand the severity step and are able to apply our rules to adjudicate claims involving impairments like juvenile arthritis.
Comment: Several commenters asserted that inclusion of the severity step without an NPRM violated the Administrative Procedure Act.
Response: We disagree, as we have already explained in the preamble to the prior rules (56 FR at 5549 and 5552). We believe that there was good cause for publishing the prior rules as final rules with a request for comments because publishing an NPRM was impracticable and contrary to the public interest. Moreover, even though we implemented the prior rules upon publication, we did solicit comments on the rules and provided the public an unusually long comment period of 147 days.
Comment: One commenter pointed out that we acknowledged there are no program benefit savings and only small administrative savings from the severity step. Several other commenters said that under the pre-Zebley disability rules, childhood claims involving not severe impairments were subsumed under the listings and effectively screened out by application of the listings. The commenters thought these claims could still be screened out just as effectively at the listings step and through an individualized functional assessment. The first commenter also asserted that the administrative savings we predicted may be unreal because we must still consider the impact of the impairment on the child's functioning at this step. This commenter also said there were no reports or studies from the 9 months under the Interim Standard (the court-ordered standard we used during the period after the Supreme Court decided Zebley and before the date we published the prior rules) showing any need for this step.
Response: We disagree with the commenters that there are insufficient reasons to justify the inclusion of a severity step in these rules. As we noted in the preamble to the prior rules (56 FR at 5552), there are some savings for cases decided at step 2 because the functional analysis at step 2 is less detailed than the analysis required at step 4. More importantly, however, the step also helps us more quickly decide the cases that clearly do not have merit. As the Supreme Court noted in Bowen v. Yuckert, 482 U.S. at 153, the severity regulation increases the efficiency and reliability of the evaluation process by identifying at an early stage those claimants whose medical impairments are so slight that they would not be found eligible even if we were to proceed to the later steps of the evaluation process. Our experience using the severity regulation in the past two-and-one-half years has shown that this is true in childhood disability cases as well. Therefore, we believe there are valid reasons to include the severity step in the evaluation process for children.
The Interim Standard did not include a "not severe" step, and therefore could not show whether such a step would be useful. In any case, we now have more than two-and-one-half years of case reviews and experience demonstrating the efficacy and accuracy of the step.
Section 416.924(e) When Your Impairment(s) Meets or Equals a Listed Impairment in Appendix 1
Comment: One commenter pointed out that the Supreme Court found the severity of the listings to be more restrictive than the statutory standard. The commenter recommended that, to emphasize that the listings no longer set the standard for children's disability, we should add specific language to § 416.924(e) and § 416.924b(a)(2) of the prior rules (final § 416.924a(a)(2)) to make it clear that the listings represent a more severe standard than is necessary to establish disability. The commenter also suggested we make it clearer that, unless the child is performing substantial gainful activity, a child's claim must always be approved if his or her impairment satisfies the duration requirement and the requirements of a listed impairment, but that failure to meet or equal a listing will never justify denial of a claim. Another commenter made the same comment without referring to the Zebley decision.
Response: We did not adopt the comment because it is unnecessary. The current rules clearly state this policy, and it is not necessary to restate it in other places. As we have explained above, each rule must be read in the context of all the rules in subpart I; no rule stands alone without reference to all of our other rules. Aside from the fact that we provide a sequential evaluation process with a step beyond the listings step—which in itself should be sufficient to establish that no child will be denied solely for failure to have an impairment(s) that meets or equals a listing—final § 416.924(e) states: "We will not deny your claim on the basis of a finding that your impairment(s) does not meet the requirements for any listed impairment or is not equal in severity to any of the impairments listed in appendix 1." Moreover, since the Supreme Court decided Zebley in February 1990 cases have not been denied on the basis that a child's impairment(s) did not meet or equal in severity any listed impairment.
Comment: Several commenters pointed out that the Supreme Court had found the listings to be inherently incomplete (by virtue of being a finite list) and always in danger of being out-of-date. Therefore, in order to comport with the Supreme Court's analysis, and to facilitate and encourage use of the functional equivalence principle, the commenters recommended that the regulations should more directly acknowledge the limited role and shortcomings of the listings.
Response: We did not adopt the comment. As we discuss below with regard to the comments on functional equivalence (final § 416.926a), the Supreme Court made these statements in the context of examining the propriety of a listings-only test of disability for children. The point of the analysis was to show why we could not establish a standard of comparable severity by confining our adjudication to the listings, and why we were required to devise another step beyond the listings in order to satisfy the comparable severity standard in the statute. The Court did not state or even imply that we should alter the method of adjudication at the listings step, or that we should be required to acknowledge any shortcomings of the listings. (As we explain later, we did improve our method of adjudication under the listings in an effort to improve our entire disability evaluation process for children even though this was not a requirement of the Zebley decision.)
Moreover, based on our operating experience since implementing the prior rules, we do not believe that it is necessary to “encourage” the use of the functional equivalence policy; our adjudicators are well aware of its existence and how to apply it.
Comment: Three commenters called on us to update the Listing of Impairments for children's disabilities, noting that the listings for some conditions are already out-of- date, that others are incomplete, and that others are lacking. One commenter stated that the current listings did not include fetal alcohol syndrome (FAS), acquired immunodeficiency syndrome (AIDS), or human immunodeficiency virus (HIV) infection that is not AIDS. Another commenter said that the listings did not include AIDS, Down syndrome, muscular dystrophy, infant drug dependency and FAS. One commenter pointed out that the Supreme Court had stated that the listings did not include spina bifida. 110 S.Ct. at 893, n.13. This commenter said that the rules should be amended to provide an expedited procedure for making additions to the listings. The commenter suggested that such a procedure might be established by providing in the preamble to the listings that “the Secretary, or the Secretary's delegate may, in his or her discretion, add to the listing in concert with a petition by interested public citizens or groups.” Another commenter called for a formalized mechanism to review and modify listed impairments based on current medical knowledge, stating that such an approach would be consistent with the current rules, which say that the listings are not intended to be self-limiting.
Response: We have not adopted these comments. We are in the process of revising the listings for both children and adults; however, these revisions go far beyond the ambit of the present rules and will be proposed through normal Administrative Procedure Act (APA) rulemaking procedures. We have published final revisions of both the multiple body system listings, which includes Down syndrome, FAS, and other such disorders, and the childhood mental listings (55 FR 51204 and 51208, December 12, 1990). We have also published NPRMs proposing to update the listings for endocrine and multiple body system disorders and to add rules for the evaluation of immune system disorders, including human immunodeficiency virus (HIV) infection (56 FR 65702, December 18, 1991), adult mental disorders, which may be applicable to children in certain circumstances (56 FR 33130, July 18, 1991), the respiratory listings, including the childhood asthma listing (56 FR 52231, October 18, 1991), and the cardiovascular listings, including the childhood listings (56 FR 31266, July 9, 1991). We have also published in the Federal Register, Social Security Ruling 91-8P, which addresses our procedure for the evaluation of HIV infection and specifically addresses the manifestations of the infection in children (56 FR 65498, December 17, 1991).
At the time we received the comments about Down syndrome and FAS, there were specific listings for both impairments, in Listing 110.06 (for Down syndrome) and Listing 110.07 (for FAS). The second paragraph of section 110.00A.2. of the listings explains that FAS is an example of an impairment that should be evaluated under Listing 110.07; by inference, we also include infant drug dependencies under that listing. (See 55 FR 51204, December 12, 1990.) Although the diagnosis of “muscular dystrophy” is not specifically stated in the listings, Listing 110.06, “Motor dysfunction due to any neurological disorder,” describes the impairment. Similarly, our listings (though not using the exact name) actually have long included spina bifida at Listing 111.08, meningomyelocele, which is the technical, anatomical description of what can be a serious, listing-level result of spina bifida.
Finally, we do have a formal mechanism for updating the listings, and our mechanism is consistent with what the commenter recommended we do.
Comment: One commenter observed that “the individual condition listings carry some elements of physical functioning; however, they provide no generic view of physical disability nor are they consistent across condition groups. A person with less disability may be determined eligible because of the idiosyncracies of one specific disease compared to another.” Another commenter recommended that, to facilitate functional equivalence determinations, all the childhood listings be revised to include both medical and appropriate functional considerations, as was done with the mental disorders listings in 112.00 of the Listing of Impairments.
Response: Although the first comment was not entirely clear, we believe that the commenter was saying that some listings have criteria that are less severe than the criteria in other listings, especially among the physical listings. Although it might be debated whether such comparisons are possible or even necessary, any differences are insignificant because a claimant may be found disabled using the policy of functional equivalence, and because there is another step beyond the listings step at which children whose impairments do not meet or equal listings can still establish that they are disabled. However, as we revise each of the listings sections, we will consider including appropriate functional considerations, as suggested by the second commenter.
Section 416.924(g) Basic Considerations
Comment: One commenter wanted to know the meaning of statements in the preamble and in § 416.924a(b) of the prior rules (final § 416.924(g)) with regard to determining the validity and reliability of formal testing. The commenter quoted preamble language (“* * * the results of standardized testing should be consistent with the remainder of the record * * *” (56 FR at 5538)) and asked whether it means that if the child appears to be functioning at a level higher than the score would suggest, SSA will disregard the scores.
Response: We do not disregard any test scores that we receive in a child's claim. We believe the meaning of final § 416.924(g)—which is also nearly identical to language in 112.00D of the childhood mental listings—is clear. It says, in pertinent part, that “* * * any discrepancies between formal test results and your customary behavior and daily activities should be duly noted and resolved.” We do not disregard any relevant medical or nonmedical evidence, including test scores, but neither do we disregard apparent conflicts in the record when we consider that evidence in conjunction with the rest of the evidence. We take whatever steps are necessary (e.g., recontact with the testing source for input on the validity of the test scores, or recontact with other medical or nonmedical sources to find out more about the child's actual ability to function) to determine whether there really is a conflict, and to resolve the issue.
Comment: Three commenters noted that although the proposed final rules show an appreciation of the importance of obtaining information about a child's functioning from nonmedical sources such as parents, teachers, and other caregivers, the regulations do not require us to obtain records from these sources. The commenters feared that unless we explicitly acknowledge this responsibility in regulations and give instructions for obtaining these records, we may not fully develop the child's claim. One of the commenters was particularly concerned that the regulation does not strongly recommend that adjudicators obtain details on the child's health from the child's personal physician; the commenter recommended that we include a provision requiring the use of this information. Amending language on these issues was suggested for § 416.924a(b)(2) of the prior rules (§ 416.924(g)(2) in these final rules).
Response: Final § 416.924(g) clearly states that we will consider nonmedical evidence in any case in which it is relevant. Because a significant number of children are found to be disabled based solely on medical evidence, it is not necessary to require the development of nonmedical evidence in all cases. We did not adopt the comment that we should add language to these rules requiring our adjudicators to obtain evidence from the child's treating physician because, shortly after the close of the comment period for these rules, we published final rules in the FEDERAL REGISTER which accomplish the same goal. Pursuant to § 416.912(d) of the final rules, “Standards for Consultative Examinations and Existing Medical Evidence,” published on August 1, 1991 (56 FR 36932), we will make every reasonable effort to develop a complete medical history for at least the 12 months preceding the month in which the application is filed, before we make a determination that a child is not disabled.
Section 416.924a Age as a Factor of Evaluation in Childhood Disability
Comment: Three commenters recommended that we replace the last clause of § 416.924b(b) of the prior rules (final § 416.924a(b))—“however, we will not apply these age categories mechanically in borderline situations”—with different language. One commenter suggested that we use language from the preamble which would remove the reference to “borderline situations” and emphasize that each case must be evaluated on its own merits. The other two commenters echoed these comments but suggested their own replacement language. One commenter thought that rigid application of the age categories carried the greatest risk of any provision in the childhood disability rules of being mechanically applied, which would work to the detriment of at least some children.
Response: We responded to the comments by deleting the statement and in the general reorganization of the rules.
The clause in § 416.924a(b) of the prior rules was almost identical to the last sentence of § 416.963(a), the rule setting out the adult age categories, the language of which we had adopted for consistency. However, we emphasize in these rules that the age categories in the childhood rules have a different purpose than the age categories in the adult rules. In the adult rules, assignment to a particular age category can be dispositive of the issue of disability. This is because, under the medical/vocational rules and guidelines in appendix 2 to subpart P of part 404, it is possible for an adult who is in a lower age category (e.g., a “younger individual,” aged 49) to be found not disabled, while another adult, with the same residual functional capacity, education, and work experience but who has reached the next age level (e.g., a person who is 50 years old and, therefore, “closely approaching advanced age”) might be found disabled.
The childhood regulations, however, do not contain rules like those for adults in appendix 2. The childhood age categories function as descriptive devices; that is, they are a convenient way for us to describe functioning and the kinds of evidence we would expect to need for children of different ages (in § 416.924d), and to set down guidelines for determining disability (in § 416.924e). Moreover, all of the guidelines in final § 416.924e regarding what may constitute a disability in the different age categories are set at the same level of severity; they merely use different descriptors to describe age-appropriate assessments of disability. Therefore, there is no disadvantage (or advantage) to a child's being “assigned” to one age category or another.
We believe that the general reorganization of the final rules also makes this clear. By moving § 416.924a(c) of the prior rules, “Terms used to describe functioning,” into final § 416.924b, “Functioning in children,” we have incorporated into the basic rules on the assessment of functioning in children the principle that the various descriptors of functioning (activities of daily living, developmental milestones, etc.) can be used across age categories where appropriate. Thus, for example, the final rule at § 416.924b(b)(3) on the assessment of functioning provides that, “[o]rdinarily, activities of daily living are the most important indicators of functional limitations in children aged 3 to 16, although they may be used to evaluate children younger than age 3.” This is also a basic principle in the listings that use age categories. For instance, in the preamble to the final publication of the childhood mental disorder listings, we stated:
This is not to say that children who are older than 1 cannot be found to have an impairment which is equal to the severity of listing 112.12. As we emphasize throughout these responses, any child who does not have a listed impairment can still be found disabled if he or she has an impairment or combination of impairments that is equivalent to any listed impairment. Children older than 1 whose impairment manifestations are identical or sufficiently similar to the requirements of 112.12 could, in certain situations, be evaluated using the new listing (55 FR at 51227).
The reason we did not adopt the suggestion to incorporate our language from the preamble to the prior rules is that it still implies that assignment to a particular age category can somehow matter in the ultimate decision of disability. On balance, we think that the better course of action is to delete the idea and reorganize the rules, as discussed above.
Comment: Three commenters objected to the provision in § 416.924b(c) of the prior rules (final § 416.924a(c)). That section states that we compute a corrected chronological age for premature children until the prematurity is no longer considered a significant factor, generally around age 2. The commenters argued that the provision appears contrary to the statute. They said that, although a pediatrician may need to adjust a child's chronological age to determine whether a developmental delay is permanent, the law does not require that a child have a permanent impairment in order to establish disability. The commenters also thought that using an adjusted age could result in incorrect disability determinations. They gave an example of an 18-month-old child, born 10 weeks prematurely and with mild mental retardation, who would be found to have an impairment that meets the childhood mental disorder listings if she were found to be functioning at less than 2/3 of her chronological age in two of the paragraph B criteria of the childhood mental disorder listings (i.e., if she were functioning at a chronological age of 12 months). However, the commenters stated that if we were to adjust her chronological age to correct for her prematurity, her “adjusted” age would be 15 1/2 months and she would not meet the listing criteria.
The commenters also thought that correcting a child's chronological age denies children who were premature an individualized assessment of their impairments, although they did not explain why they thought this.
Two of the commenters submitted identical recommendations for language changes to § 416.924b(c)(3)(i) of the prior rules (final § 416.924a(c)(2)(i)). The changes would have indicated that we correct chronological age: (1) only when there is a question whether any delay was caused “solely” by prematurity that is expected to resolve; (2) only in the first year of life, and (3) only when we cannot separate out other causes for the delay. The suggested provision would also have provided for the payment of benefits retroactive to the date of application if it later developed that a disabling condition was present. In a similar vein, the third commenter recommended that if we were to use a corrected chronological age at all, we should limit it to the first year of life and only when we cannot identify specific medical or genetic causes for the delay.
Response: We partially adopted the comments. We believe the commenters misunderstood both our intent and how the rules function, but we believe that the prior rule can be made clearer. It is not our intention in adjusting a premature child's chronological age to determine whether a child has a “permanent impairment,” nor is that the purpose of such an adjustment in pediatric practice. Pediatricians adjust a premature child's chronological age in order to make the results of their evaluations more valid and predictable. Such an adjustment is also more useful in planning treatment or intervention, and in the pediatricians' discussions with parents about a child's possible developmental delays. A pediatrician must be certain that a child is progressing physically and mentally according to an expected developmental channel.
In the case of a premature child, it is necessary to consider the child's gestational age at birth in order to know whether the child is progressing within a normal range of development given his or her gestational age at birth. If, given the child's adjusted chronological age (i.e., adjusted for gestational age at birth), the child's progress is not within a normal expected range, the pediatrician then must consider ongoing monitoring of the child's development and provision of intervention services. For example, infants usually are able to turn their bodies from a supine to a prone position by 3 or 4 months of age. If a child who was born 2 months prematurely cannot do that at a chronological age of 4 months, the adjustment of the child's chronological age to 2 months lets the physician and parents know that there is no cause for concern at that time. If, on the other hand, the same child at a chronological age of 6 months could not turn her body to a prone position, there would be cause for concern because the child's adjusted chronological age would be 4 months, an age at which the infant would be expected to be able to perform that developmental skill.
Our reasons for adjusting a premature infant's chronological age are similar to those of pediatricians. We need to know if a child's functioning at the time of our evaluation is age-appropriate or whether the child is not functioning in the way we would expect, a sign of impairment-related limitation. In the case of a premature infant, the only way to ensure that our evaluation of the child's functioning is valid is to take into consideration the child's gestational age at birth, and to adjust accordingly our idea of what is age-appropriate for that infant.
We must also point out that in many instances we do not have to compute a child's adjusted chronological age and reinterpret the evidence in terms of that adjustment. This is because the adjustment is made by the treating physician or psychologist (or consulting physician or psychologist) when he or she evaluates test results for assessing a child's development. The medical source would record the child's chronological age, the date of testing, the child's adjusted age at the time of testing, and the child's performance within a range, or at a level of functioning in various areas (e.g., motor, social). If the treating or consultative source's report is not clear about whether the child's prematurity has been taken into consideration, we will recontact the source to ask that question, pursuant to § 416.912(e) of our regulations. (See, “Standards for Consultative Examinations and Existing Medical Evidence,” 56 FR at 36963.)
However, we agree with the commenters to some extent that it is not always appropriate to adjust a child's age between the ages of 1 and 2. Within pediatric practice, there is general agreement that a premature child's age should be adjusted up to 12 months of age for the purpose of evaluating either development or linear growth, because it is very difficult in the first year of a child's life to differentiate the effects of prematurity from the effects of any possible underlying impairment. It is also generally agreed that for the purpose of evaluating development, a child's age need not be adjusted after 24 months of age because by that time a premature child should have “caught up” in terms of achieving developmental milestones. When a premature child is still exhibiting significant developmental delays at 24 months, it is more clearly discernible that those delays are attributable to an identifiable disorder. Within the period between 12 to 24 months of age, however, pediatric practice varies as the pediatrician sorts out developmental effects that may still be attributable to prematurity from those that may be attributable to a medically determinable impairment. During this period, pediatricians may make a full adjustment of age (e.g., deducting 10 weeks from a child's chronological age if the child was born 10 weeks prematurely), or only a partial adjustment (e.g., deducting 5 weeks from a child's chronological age if the child was born 10 weeks prematurely), or no adjustment at all.
In cases of developmental delay, whether or not an adjustment of chronological age is made during the period between 12 and 24 months of age depends upon clinical judgment about many qualitative factors concerning the child's development and the severity of the child's developmental delays. The more significant the developmental delays, the more likely it is that no adjustment or only partial adjustment would be made, because the observable delays are more likely to be the result of underlying impairment rather than of prematurity. For instance, in the example provided by all three commenters about the 18-month-old child with mild mental retardation (i.e., mental retardation with an IQ in the 60 to 70 range), it is not necessarily the case that a pediatrician (whether treating, consultative, or reviewing) would fully adjust the chronological age of the child. Many factors would have to be considered. For example, manifestations of delay in more than one area of functioning, as indicated in the example, tend to suggest that the child is experiencing the global effects of the medically determinable impairment rather than of prematurity. Therefore, the clinician would have to consider the particular nature and severity of the medical impairment(s) and the child's delays in order to determine whether full, partial, or no adjustment of age would be appropriate. We must also add again that the example submitted by the three commenters seemed to assume that the child had to have an impairment that met the listings in order to be found disabled; this, of course, is not the case under the new rules.
Given the foregoing discussions and the comments, we have revised the rules to indicate more clearly that when assessing either development or linear growth in premature children, we will make a full adjustment for chronological age until age 1; thereafter, in cases involving developmental delay and until prematurity is no longer a factor (generally, around age 2), we will decide whether to make an adjustment and, if so, the extent of the adjustment to be made. Our decision will be based on judgment, informed, of course, by the individual facts of the case, including any treating source opinion on the matter. Even though it is not the exact approach the first two commenters suggested, we believe that it is fair, consistent with standard pediatric practice, and administratively feasible. We did not adopt the first two commenters' suggestion that, when we have made an unfavorable decision in a case, we should provide benefits retroactive to the date of the original application if we later determine that a disabling impairment was present. However, the rules for reopening in §§ 416.1487 to 416.1493 would still be applicable should the claimant reapply. In addition, the claimant has the right to appeal an adverse determination in accordance with our regulations.
Comment: A number of people submitted the same comment, asking us to delete § 416.924b(d)(3) of the prior rules. The commenters thought that the paragraph stated we would make assumptions about a child's “adaptability” based on age without individualized consideration of the effects of the child's impairments. Most of the commenters said that it is not true that every child benefits from increased adaptability as he or she grows older. Some commenters said that older adolescents may experience a variety of impairments that may render their functioning similar to that of younger children, and make any transition into the adult workplace exceedingly difficult. Advocates of children with severe physical impairments (e.g., cerebral palsy, spina bifida) were concerned that the general guidance in § 416.924b(d)(3) of the prior rules might be applied as a presumption in the case of adolescents whose impairments only exacerbate the difficulty of assimilation into adult society as they grow older. The commenters said that evaluation of a child's adaptation to his or her impairment(s) and ability to function age-appropriately must consider the nature of the child's impairment(s), when the impairment(s) began, and how it affects the particular child.
Two commenters perceived the provision as a “double-counting” of the factor of age in the case of older adolescents. That is, they thought we make a general presumption of increased adaptability due to the adolescent's age in addition to considering the child's age as a factor in the individualized functional assessment (i.e., in terms of the child's performance of age-appropriate activities of daily living).
Two commenters also recommended the deletion of the last sentence in § 416.924b(d)(2) of the prior rules: “Generally, the more global effect of these kinds of impairment on development diminishes with increasing age.”
Response: We disagree with the commenters, but we have clarified final § 416.924a(d) in response to the comments. We believe that it is a well-established and widely accepted principle that, given the nature of child development, impairments that occur during the early developmental period generally have a more pervasive impact on a child's functioning than those that occur later in life.
We did not intend the statement of this general truth, however, to obscure the fact that adaptability to an impairment is a highly individual matter regardless of one's age. For this reason, we evaluate an older adolescent's impairment(s) in the same manner that we evaluate all other children's impairments: We consider those activities, skills, and behaviors that are appropriate for children of the same age. It is also certainly true that adolescents may experience serious functional limitations resulting from developmental, degenerative, or traumatic impairments, as well as other impairments with onset later in childhood. Therefore, we do not “presume” that an older child is better able to adapt to his or her impairment than a younger child; we evaluate each case on its own facts.
To make this policy clearer, we have revised the opening sentences of § 416.924b(d) of the prior rules (final § 416.924a(d)), and added a new § 416.924a(d)(1), both of which explain that these guidelines apply to determinations of disability, not to the assessment of functioning itself. New paragraph (d)(1) explains that we recognize that how a child adapts to an impairment(s) depends on many factors, including the nature and severity of the impairment(s), the child's temperament, adult intervention, and the child's age at onset. We then explain that “adapting to an impairment” means the child's ability to learn skills, habits, or behaviors that allow the child to compensate for the impairment(s) and to function as well as possible despite the impairment(s). Finally, we explain that our disability determination will consider how the child has adapted to the impairment(s) and how well the child is functioning, considering all appropriate factors.
Comment: Several commenters thought that the principle in § 416.924b(d) of the prior rules was not legal. The commenters said that the statute allows us to consider an adult's age when determining disability, but that the law has no similar provision for children.
Response: We disagree with the comments. The Act does not preclude consideration of age in childhood claims. Indeed, as we have already stated at the beginning of this preamble, the statute states very little about what the standard of disability for children should be, only that a child's impairment(s) should be of “comparable severity” to an impairment(s) that would disable an adult. Because the statutory standard is one of comparability to the adult standard, we believe that consideration of age is permissible under the law.
Comment: Several commenters discussed whether the new rules set a higher standard of disability for older adolescents. Five commenters, in identical language, said that the rule might be considered a higher standard and, therefore, be misapplied. One commenter said that the provision violates the spirit of Zebley because it sets a higher standard of disability for older adolescents. Finally, one commenter said that we treat 16-18-year-olds as if they were already younger adults, subject to SSA's adult claimant rules. The commenter said that we were required to do a full analysis of the child's functioning, using the five functional domains.
Response: We disagree with these comments. We do not evaluate the disability claims of older adolescents using a higher standard than we use for younger children, nor do we believe that these rules disadvantage older adolescents. Our rules recognize that adolescents begin activities that prepare them for the world of work, and that these activities may occur both in and outside of school. Specifically, with regard to older adolescents, the definition of disability in § 416.924(a)(3) recognizes that the functional abilities, skills, and behaviors that are age-appropriate for 16-to-18-year-olds are those that are also age-appropriate for 18-year-olds; i.e., those capacities that allow a person to function in the adult world. Final § 416.924a(d) provides more detail to the basic definition. We have established a new § 416.924a(d)(4) for adolescents, which clarifies principles from the basic definition of disability in § 416.924(a)(3) and in § 416.924b(d) of the prior rules, and adopts language from our manual instructions. In new subparagraph (d)(4)(ii) we clarify our policy that, inasmuch as age-appropriate functioning for an older adolescent is also that of an 18-year-old, the disability determination for an older adolescent must be consistent with the disability determination we would make for an 18-year-old with the same functional limitations. Thus, final § 416.924e(d) further describes the work-related mental and physical functions that we evaluate for older adolescents.
We also do not believe that the rules violate the letter or spirit of Zebley. As required by the Supreme Court's decision, the rules provide older adolescents an additional adjudicative opportunity beyond the listings step to demonstrate they are disabled, comparable to the opportunity which is given adults. Our experience has shown that the rules have not been misapplied.
Finally, we do not apply SSA's adult claimant rules to the claims of older adolescents. Older adolescents receive the same kind of individualized functional analysis as all other children under these rules. When we perform an individualized functional assessment, we draw a profile of how an older adolescent is functioning by considering his or her activities of daily living in the applicable functional domains. We then evaluate whether those activities are age-appropriate. That is the same general process by which we evaluate the impairment(s) of a child of any age. For an older adolescent, once we have gathered all the information we need about the adolescent's activities of daily living, we construct a profile of his or her functioning in all of the five functional domains that may be affected by the impairment. Once that profile is established, we translate the functional information that we have into work-related (and, therefore, age-appropriate) terms. The profile we draw of the adolescent's physical abilities must enable us to determine if he or she can perform the basic physical demands of at least sedentary work. The profile we draw of the adolescent's mental abilities must also enable us to determine if he or she can perform the basic mental demands of at least unskilled work. This is not the same determination we make for adults: In an adult's claim, the disability determination finally addresses whether the person can do past relevant work or other work; a disability determination in an older adolescent's claim does not address whether the child can work, only whether the child can do work-related physical and mental activities.
Comment: One commenter said that it is important to emphasize that § 416.924b(d) of the prior rules provides only guidelines concerning the impact of severe impairments on younger children and older adolescents. It was recommended, therefore, that we add three sentences from the prior preamble (56 FR at 5540) to the paragraph.
Response: Although we did not incorporate the exact language suggested by the commenter, we provided two sentences in § 416.924a(d)(4)(ii) which have the same meaning. We also believe that we have addressed the comment by adding final paragraph 416.924a(d)(1), the new paragraph that provides rules on how children “adapt” to their impairments.
Section 416.924b Functioning in Children
Comment: One commenter pointed out that there were inconsistencies in § 416.924(a), § 416.924a(c), and § 416.924e(b) of the prior rules in our use of terms to describe functioning at the different age levels. The commenter recommended that we make these various age category descriptions consistent.
Response: We adopted the comment. We agree that there were some unintentional inconsistencies in the rules. For example, § 416.924a(c)(2) in the prior rules, (§ 416.924b(b)(2), “Developmental milestones,” in these final rules) stated that “developmental milestones” are ordinarily the most important indicators of impaired functioning in children from birth until the attainment of age 6, although they might be used to evaluate older children, especially school-age children. However, § 416.924e(b)(1) in the prior rules (“How we describe functional limitations”) appeared to stress the use of developmental milestones only for children aged from birth to 3 years while § 416.924e(c)(2) in the former rules seemed to stress the use of activities of daily living in children aged 3 to 6.
We have, therefore, stated in § 416.924b(b)(2) in the final rules (§ 416.924a(c)(2) in the prior rules) that “failures to achieve developmental milestones” are ordinarily “the most important indicators of impaired functioning from birth until the attainment of age 3, although they may be used to evaluate older children, especially preschool children.” This revision makes § 416.924b(b)(2) consistent with the guidance in final § 416.924e(b)(1), the language of which we have not changed. The revision also makes both sections consistent with our basic definition of disability in § 416.924(a)(1). Similarly, § 416.924b(b)(3) now states that “activities of daily living” are ordinarily “the most important indicators of functional limitations in children aged 3 to 16,” but that “they may be used to evaluate children younger than age 3.” This makes the language of § 416.924b(b)(3) consistent with our statements in § 416.924e(b)(2), which is unchanged, and § 416.924(a)(2) in the basic definition of disability. We have also added a new § 416.924b(b)(4), “Work-related activities,” for children aged 16 to 18, to be consistent with §§ 416.924e(b)(3) and 416.924(a)(3). Finally, to reflect the addition of new § 416.924b(b)(4), we have redesignated paragraph (c)(4) of the prior rules, “Domains,” as paragraph (b)(5) in the final rules; we have also amended the age ranges referred to in the third sentence of the paragraph to reflect the foregoing changes. In addition, we have changed the heading of final paragraph (b)(5) to “Domains and Behaviors” because “responsiveness to stimuli” and “concentration, persistence, and pace” are not “domains” but “behaviors.”
None of these revisions is intended to be a substantive change from the rules as we originally published them; rather, they clarify our intent so as to prevent any misunderstanding of our policy. The rules in final § 416.924b(b) are definitions of terms we use in other rules. From the outset, our primary intent in including these definitions was to provide a common set of terms for use with the new rules and to provide some guidance about the kinds of evidence of functioning one might expect to find (or seek) for children of different ages. By using words like “ordinarily” and “although” in these sections, our intent has been to make clear that the terms we use to describe functioning are not meant to be hard-and-fast rules, but only what we think would be the most likely information we would encounter in our case development.
Comment: One commenter said that the wording of § 416.924a(c)(4) of the prior rules (final § 416.924b(b)(5)) was ambiguous in its use of the phrase “development or functioning.” This commenter also believed that language in the preamble to the publication of the prior rules that explained the all-inclusive nature of the domains and behaviors with respect to children's functioning should be included in the regulations.
Response: We adopted the comments. We deleted from the first sentence of final § 416.924b(b)(5) the phrase, “development or”, to emphasize that the domains and behaviors do, indeed, address functioning in all children. We added a new fourth sentence to explain that the domains and behaviors are intended to include all of a child's functioning, and a new fifth sentence to explain that all effects of a child's impairment(s) on daily functioning will be considered within the domains and behaviors.
Comment: One commenter who was concerned that we do not adequately provide for the assessment of children with physical impairments, requested that we add to the definition of “activities of daily living” a sentence that would indicate that activities of daily living may be more useful than developmental milestones for evaluating children with physical or nondevelopmental impairments.
Response: We believe that our revisions to § 416.924b(b)(2) and (3), described in a previous response, respond to the comment. With these changes, we now place greater emphasis on “activities of daily living” for children who are at least 3 years old. In further response to the comment, we have also revised the end of the second sentence of § 416.924b(b)(2) to indicate that such activities may also be used to evaluate children who are younger than age 3.
Section 416.924c Other Factors We Will Consider
Comment: One commenter maintained that additional language and direction were needed to emphasize the relevance of other factors not enumerated in § 416.924d of the prior rules (final § 416.924c). The commenter said that, although former § 416.924d(a) of the prior rules (final § 416.924c(a)) states that the enumerated factors are “some” of the factors to be considered in an individualized functional assessment and “are not limited to” the factors enumerated, the section does not provide guidance about what those other factors might be. The commenter thought it “clear” that there were many other factors that could be considered, such as allergies and environmental limitations. The commenter referred us to a footnote in the Zebley decision. Zebley, 110 S.Ct. at 894, n.17. Four other commenters echoed this comment in the same or similar language, suggesting that we add certain risk factors to the section, such as the impact of socioeconomic factors on impairments; familial and environmental risks, including parental problems due to age, substance abuse, illness, or developmental disability; and effects of homelessness, abuse/neglect, and malnutrition.
Response: We did not adopt the comment. The first sentence of final § 416.924c states clearly that we will consider all factors that are relevant to the evaluation of the effects of a child's impairment(s) on his or her functioning. The third sentence of the paragraph further states that the factors described in the section are some, but not all, of the possible factors that could be considered in the evaluation of a child's impairment(s). We included these provisions because it would not be possible to identify every factor to be considered in the evaluation of every child's claim; each claim presents a unique profile of impairment(s) and factors that are particular to that child.
In any case, we could not add the “factors” suggested by the commenters. Allergies and malnutrition would never be “other” factors because they are themselves medically determinable impairments; to call them “other” factors would be incorrect and confusing. The other suggestions described “risk” factors, which we cannot include in this rule or any other, as we explained in the preamble to the prior rules and will explain in more detail in our response below regarding the use of risk factors.
Finally, the first commenter's reference to footnote 17 in the Zebley decision was unclear. The footnote addressed “the rigidity of the Secretary's listings-only approach” and mentioned the following factors: pain, side effects of medication, feeding problems, dependence on medical equipment, confinement at home, and frequent hospitalization. Zebley, 110 S. Ct at 894, n.17. The Court also later in the footnote mentioned “severe swelling, food allergies and fever,” in a context which showed that it understood that these are medical findings. Aside from the fact that we no longer employ a listings-only approach, our rules plainly consider all of the factors noted by the Court at steps 2, 3, and 4 of the sequential evaluation process. Furthermore, our rules explicitly mention pain (which we address in the next three separate comments), side effects of medication, dependence on medical equipment, confinement at home, frequent hospitalization, and (as in the case of fever) chronic illness.
Comment: Several commenters were concerned about what they perceived to be a lack of any reference in our new rules to the evaluation of pain and other symptoms in light of the Supreme Court's criticism of the way in which we considered pain and other symptoms under the listings-only approach we used to deny childhood disability claims. These commenters held that the statement in the preamble to the prior rules that the childhood regulations, “must be read in the context of * * * existing rules for determining disability” (56 FR at 5537) was inadequate because § 416.929, “How we evaluate symptoms, including pain,” and Social Security Ruling 88-13, “Evaluation of Pain and Other Symptoms,” did not mention children and were not written with children in mind.
Several commenters stressed that symptoms may be particularly difficult to evaluate in children because children may not be able to describe their own symptoms, may have other problems articulating their symptoms because of shame, embarrassment, or fear, may shy away from activities causing pain more than adults because they do not understand that pain can be overcome or controlled, or, if their symptoms had existed since birth, because they had no symptom-free frame of reference. One commenter said that these rules “never” mention symptoms.
These commenters stated that adjudicators are more likely to consider a child's symptoms if the childhood disability rules specifically require them to do so. Therefore, they recommended that we add a paragraph to § 416.924d of the prior rules (final § 416.924c) to include pain and other symptoms among the “other factors” we will consider. The new paragraph would address the consideration adjudicators are to give to allegations of pain and other symptoms in children.
Response: The comments have been rendered moot by an event that took place after the close of the comment period. On November 14, 1991, we published in the FEDERAL REGISTER final rules for the “Evaluation of Symptoms, Including Pain” (56 FR 57928). These new rules, which revise our previous rules in § 416.929 for the evaluation of pain and other symptoms, include specific reference to the evaluation of symptoms in determining a child's ability to function independently, appropriately, and effectively in an age- appropriate manner at each step of the childhood sequential evaluation process, and were prepared with the evaluation of children in mind.
It is not true that the prior rules “never” mentioned symptoms. Section 416.924a(b)(1) of the prior rules (final § 416.924(g)(1)) requires us to consider evidence of symptoms when we assess functioning, as do three of the paragraphs in § 416.924d of the prior rules (final § 416.924c), and final § 416.926a(a).
However, we do agree with the commenters who pointed out that children may not be able to describe their own symptoms or may have difficulty articulating symptoms. Therefore, in response to the comments, we have added a new second sentence to § 416.928(a), “Symptoms,” which states that we will accept as a statement of a child's symptoms the description given by the person most familiar with the child when the child is unable to adequately describe his or her symptoms. We have also made minor editorial changes to the prior text for context. In response to the comments, we have also added to final § 416.924(b) a statement that we will evaluate any limitations in a child's ability to function that result from symptoms, including pain. We have also added a statement to final § 416.924b(b)(5) that the presence of pain or other symptoms can adversely affect functioning in the domains or behaviors. We continue to emphasize, however, that these childhood disability rules must be read in the context of all the other rules governing the evaluation of disability. Thus, every reference to an “impairment” and to “medical findings” carries with it the requirement to obtain evidence about and consider “symptoms, signs, and laboratory findings,” as set forth in §§ 416.908, 416.928, and 416.929.
Comment: One commenter said that the Eighth Circuit in Polaski v. Heckler, 739 F.2d 1320 (8th Cir. 1984) specifically held that we must consider allegations of pain and other subjective complaints. The commenter noted that Polaski required us to give full consideration to all evidence, including (1) the claimant's daily activities; (2) the duration, frequency, and intensity of pain and other subjective complaints; (3) precipitating and aggravating factors; (4) dosage, effectiveness, and side effects of medication; and (5) functional restrictions. Another commenter thought that the absence of a reference to pain in the childhood disability rules will be in violation of the law set forth in Marcus v. Califano, 615 F.2d 23, 27 (2d Cir. 1979). The commenter said that the Marcus decision held that, as long as an actual impairment had been established by medically acceptable clinical and/or laboratory techniques, the absence of objective medical evidence could not be grounds to reject or find not credible a claimant's statements as to the pain associated with that impairment.
Response: Revised § 416.929, “How we evaluate symptoms, including pain,” contains language that addresses the holdings in both of these cases, as well as others. Section 416.929(c)(3) of the regulations states that factors relevant to a claimant's symptoms include the five factors from Polaski cited in the comment, and several others. (See 56 FR at 57946.) The second commenter did not point to any language in the prior childhood rules which led to the belief that we would require children to establish the existence and severity of their symptoms through objective medical evidence. We do not know of any language in these rules that could have led the commenter to such a belief. In any case, revised § 416.929(b) of our rules provides that a person must have a medically determinable impairment which could reasonably be expected to produce the pain or other symptoms. The rule specifically states: “The finding that your impairment(s) could reasonably be expected to produce your pain or other symptoms does not involve a determination as to the intensity, persistence, or functionally limiting effects of your symptoms.” The fourth sentence of revised § 416.929(c)(2) further states: “* * * we will not reject your statements about the intensity and persistence of your pain or other symptoms or about the effect your symptoms have on your ability to work (or if you are a child, to function independently, appropriately, and effectively in an age-appropriate manner) solely because the available objective medical evidence does not substantiate your statements.” (Both cites at 56 FR at 57945.)
Thus, we believe that these final childhood disability rules, which must be read in the context of our existing policies for the evaluation of pain and other symptoms, are not inconsistent with the circuit court rulings in either of the cited cases. Our rules make clear that, once an adjudicator determines that the individual has an impairment which is reasonably expected to produce the alleged symptoms, the adjudicator must consider all of the evidence relevant to the individual's alleged symptoms, even if the alleged symptoms are more severe or persistent than would be expected from the objective medical findings.
Comment: Two commenters suggested that we convene an “advisory panel” similar to the Pain Commission, or consult with multidisciplinary experts, to consider pain in children and how best to evaluate it and other symptoms in the disability determination process. They argued the need for such an effort because children may experience and respond to pain differently than do adults.
Response: The recommendation goes beyond the scope of these rules. Nevertheless, we believe that the rules we published on November 14, 1991, are sufficient to guide adjudicators in the evaluation of pain and other symptoms in children. Section 416.929 of our rules contains a detailed discussion of our policies on the evaluation of pain and other symptoms. These policies include specific reference to the evaluation of symptoms in determining a child's ability to function independently, appropriately, and effectively in an age-appropriate manner and were prepared with the evaluation of children in mind. However, we agree with the commenters that children may experience and respond to their symptoms differently than do adults. Therefore, we have revised § 416.928(a) to expand the definition of our term “symptoms” to recognize the problems children may have articulating their symptoms. Further, our current policies and procedures provide for the use of pediatric experts, where indicated, for consultative examinations, including experts in pediatric pain, where appropriate and available. Finally, under the provisions of § 1614(a)(3)(H) of the Act, we will make reasonable efforts to ensure that a qualified pediatrician or other appropriate specialist evaluates each childhood case; such individuals are aware of the special problems of evaluating symptoms in children.
Comment: Several commenters urged us to include in § 416.924d of our prior rules (final § 416.924c) an explicit consideration of the impact of “risk factors” on a child's functioning. The commenters said that by “risk factors” they mean biological factors (e.g., low birth weight, neonatal seizures, anemia, recurrent infections, spinal, cardiac, and pulmonary abnormalities), health-related factors (e.g., inadequate treatment, lack of access to treatment facilities and therapy centers), and familial/environmental factors (e.g., malnutrition, homelessness, poor air quality, parental substance abuse, dysfunctional family environment, history of physical or sexual abuse). One commenter added that the conditions that manifest themselves due to risk factors can be physical or mental/emotional in nature.
The commenters said that the Supreme Court emphasized in Zebley that we must take into account all relevant factors in child claims (e.g., age, educational background, and circumstances), and the commenters regarded risk factors among the circumstances to be considered. One commenter, who was not a pediatrician, said that “standard pediatric practice” takes risk factors into account in evaluating the severity of pediatric impairments, and that risk factors are indispensable in making longitudinal judgments about pediatric impairments. For example, the commenter thought that if a child has been abused it is relevant to consider that experience in order to arrive at a valid prognosis and to make informed decisions about duration.
The commenters noted several points we made in the preamble to the prior rules (56 FR at 5551). Most importantly, the commenters noted our position that a rule incorporating certain risk factors for children results only in a prediction of the possibility of future disability, and that to count certain factors again, after they have already been considered in the course of an equivalence determination or an individualized functional assessment, would be a double weighing of the same factors. The commenters asserted that elimination of express references in the regulations to “risk factors” is not necessary; rather we should provide language that avoids these problems. For example, one commenter said that many children with biological conditions that are not overt (e.g., spina bifida occulta, congenital heart problems) are already functionally impaired, at the very least by prophylactic orders from treating physicians; the commenter argued that consideration of risk factors may contribute to findings of current disability in these cases.
Some commenters also suggested that allowances based on predictions of disability can be appropriate. For example, one commenter said that, “without an express provision allowing the consideration of such risk factors * * * many claims in which the current level of functional impairment is not sufficient will be denied by lay adjudicators who may discount subtle but very serious underlying problems where consequences have yet to manifest themselves.” (Emphasis in original.) One commenter maintained that the assumption made in the preamble to the regulations that risk factors may have an “observable, current impact” and, therefore, will be considered in the individualized functional assessment, is not supported by the language of the regulations. The commenter said that risk factors, “must be expressly laid out for lay adjudicators” and administrative law judges. To overcome our concerns about the intrusiveness of inquiry into risk factors, as explained in the preamble to the prior rules, the commenter recommended that we limit consideration of risk factors, “to those that are objectively observed as affecting the particular child.”
In addition to the commenters who proposed that we add a new paragraph to § 416.924d of our prior rules (final § 416.924c) specifically directing the consideration of risk factors, another commenter proposed that we add a new domain titled, “Abilities as affected by environment,” to § 416.924c(a)(2) of our prior rules (final § 416.924d(c)) to address the ways in which a child's environment may contribute to, or decrease, the chance that a disability will improve.
Response: We did not adopt the comments. As we discussed in the preamble to the prior rules (56 FR at 5551), we do consider what the commenters called “risk factors” insofar as they affect the child's medical status and ability to function in an age-appropriate manner. As we explained in the preamble to the prior rules, many of the factors mentioned are covered in various ways in the rules. For instance, the so-called biological risk factors mentioned by the commenters (neonatal seizures, anemia, low birth weight, recurrent infections, and spinal, cardiac, and pulmonary abnormalities) as well as two of the familial/environmental factors (malnutrition and history of physical or sexual abuse) are, in these rules, “medically determinable impairments,” or the effects of medically determinable impairments, or (as in the case of abuse) the cause of medically determinable impairments. To call these “other factors” or “risk factors” would only be confusing since we have always considered these “factors” in our determinations. Indeed, these “factors” can be disabling or be the cause of impairments that are.
The other categories of “risk factors” named by the commenters do not contribute to our determinations of disability except if one holds—as some of the commenters did and we cannot—that a child who is not currently disabled may be granted benefits based on a prediction of future disability. If a child has a disabling respiratory impairment, we will find the child disabled: We do not have to consider that the child lives in an environment with poor air quality or receives substandard medical treatment to make this determination, just as we would not use such factors to find the child not disabled.
As we explained in the preamble to the prior rules, these kinds of factors are not relevant to a determination of disability. A child is either disabled or not, and we cannot say that the fact of homelessness or the fact that the child's parents abuse drugs can be additional factors that make the difference between a finding of “disabled” and a finding of “not disabled” without contravening the law. We do not agree with the assertion by one of the commenters that “standard pediatric practice” takes risk factors into account in evaluating severity, although we would agree that these factors are relevant to such issues as etiology, treatment plan, and prognosis.
Returning to the issue of “biological risk factors,” we want to assure the commenters about spina bifida occulta and other hidden conditions that these rules already provide for the kind of considerations the commenters feared we would overlook. If a child with spina bifida is unable to engage in strenuous play because there is a real danger of paralysis, we would find that child to be medically limited in the ability to engage in strenuous play, even if the child is otherwise asymptomatic and able to do less strenuous activities. (This does not mean that we would find the child disabled; whether the child would be found disabled would depend on the extent to which the child is limited by his or her impairment.) Final § 416.924c(d) and (e) also address this subject: The example is of a child who has structured his or her life (i.e., by avoiding strenuous play) so as to minimize the chance of devastating injury. Also, as a general matter, final § 416.924d(a) says, “When we assess your functioning, we will consider all information in your case record that can help us determine the impact of your impairment(s) on your physical and mental functioning”; similar directives are found throughout the rules. We require our adjudicators to develop and consider all impairment-related effects on function.
Thus, for purposes of assessing current disability, we believe the rules fully cover “risk factors” to the extent possible under the statute. Insofar as some commenters suggested that consideration of risk factors will allow us to predict future disability, we must repeat that allowances based on such predictions alone are contrary to the Act.
Comment: Three commenters focused on the importance of an impaired child's need for early professional care. The commenters said that many children have primary conditions which, if not treated with the necessary medical and allied professional interventions, will worsen and produce secondary deficits. Moreover, the child might be tracked into an educational program more restrictive than would have been necessary had the child been given early and proper treatment. The commenters thought that, by recognizing and considering risk factors, we could make early intervention possible through the assistance of SSI and the Medicaid entitlement that accompanies SSI in most states.
Response: We do know of the importance of early intervention for children with impairments. However, we are not legally able to provide SSI eligibility for children who are not disabled within the time period covered by their application for benefits. There are programs designed to provide early intervention for children at risk (e.g., Part H of the Individuals with Disabilities Education Act (IDEA) and Headstart), but the Social Security Act's disability provisions do not allow us to pay benefits to children who are not disabled, but who may become disabled in the future.
Comment: One commenter recommended language for the first and second sentences of § 416.924d(b) of the prior rules (final § 416.924c(b)) to convey the idea that a child might have a chronic impairment(s) which causes periods of debility but which does not necessarily always require hospitalization or outpatient care. Other commenters were concerned that § 416.924d of the prior rules did not address the possibility of children with episodic impairments.
Response: We adopted the comment, but did not use the language the first commenter recommended. Instead, we added a new first sentence to the provision, which states: “If you have a chronic impairment(s) that is characterized by episodes of exacerbation (worsening) or remission (improvement), we will consider the frequency and severity of your episodes of exacerbation and your periods of remission as factors in our determination of your overall ability to function.” We revised the next sentence (the prior first sentence of the paragraph) to state: “For instance, if you require repeated hospitalizations or frequent outpatient care with supportive therapy for a chronic impairment(s), we will consider this need for treatment in our determination.” We then replaced the last sentence with two sentences that more clearly explain how we consider the need for treatment and the frequency of exacerbations in the disability determination. The revisions better convey our original intent for this provision, which was to give some guidance for the evaluation of children who have chronic, episodic impairments that may not always limit their functioning (or may limit their functioning to a lesser extent during periods of remission) but who, on a longitudinal basis, may be so frequently and severely limited as to be disabled.
Comment: Comments and questions we received from three commenters pointed out that the language in § 416.924d(e) of the prior rules, “Adaptations,” was unclear. One commenter wanted to know whether, following the language of the rule, we could conclude that a child with cerebral palsy who is nonverbal and unable to walk is not disabled if the child can communicate with an electronic device or a manual system and can get around in a motorized wheelchair. The commenter thought that the evaluation of these adaptations should be similar to the evaluation of the factors discussed in § 416.924d(d) of the prior rules, “Effects of structured or highly supportive settings.” That is, the commenter thought we should consider the child's ability to function without an adaptation in a way comparable to the way we consider a child who functions better in a highly structured setting but is still impaired in age-appropriate settings. In a similar vein, a second commenter noted that even with the best device, a person who is otherwise nonverbal can only communicate somewhat better than not at all, but still not normally. This commenter suggested that communication devices could fall under the category of adaptations that may “impose additional limitations,” or, alternatively, be listed as a self-care activity.
The third commenter thought our statement that some adaptations “may impose additional limitations that interfere with performance of age-appropriate activities” was problematic. The commenter pointed out that the examples we provided were of devices that “enable” a person to do an activity; they did not actually illustrate adaptations that would in themselves cause limitations. For example, the commenter noted that a child who required an adapted utensil would not be able to eat in the school cafeteria without the utensil, but would be able to do so with the utensil. The utensil itself does not impose additional limitations; rather, it enables the child to do something. Indeed, the commenter said that, if an adaptive device imposes a limitation that was not previously present (i.e., that was not part of the impairment itself) it would be necessary to reevaluate the appropriateness of the device.
Finally, one of the commenters said that the child who needs an adaptation in order to function may depend upon Medicaid (through SSI) to obtain the adaptation. The commenter recommended that we clarify § 416.924d(e) to explain both the benefits to a child's functioning attributable to an adaptation and the potential loss of functioning attributable to the loss of an adaptation. The purpose of such clarification would be to ensure that children do not end up in recurring cycles of SSI eligibility and non-eligibility based on the absence or presence of such adaptations.
Response: We adopted the comments by revising § 416.924d(e) of the prior rules (final § 416.924c(e)) to make it clearer. Our intent in this rule was to evaluate the impact of adaptations essentially as the commenters thought we should. Children whose functioning is improved with an adaptation may function normally, or almost normally, but many children only function better, not necessarily independently, appropriately, and effectively in an age-appropriate manner. For instance, an ankle-foot orthosis may enable a child to walk independently, but the child may still be unable to run and engage in certain play activities; although the child's ability to function is increased, his or her abilities are still limited to some extent. Certainly, we consider a child who is unable to communicate without the assistance of an electronic device to be limited in the communicative domain, even though the device may enable the child to communicate to some extent.
We also agree with the third commenter that the examples of adaptations that may impose additional limitations did not illustrate the principle. They are not in themselves intrusive—as in the example of the special utensil, they enable children to function better, even if not “normally.”
For these reasons, we revised the paragraph to state that some adaptations (such as eyeglasses and hearing aids) may enable a child to function normally, or almost normally, whereas others (such as ankle-foot orthoses, hand or foot splints, and other adaptations we formerly said could be intrusive) may increase functioning even though the child is still functionally limited.
(We deleted the reference to “sleeping” because it was unclear.) In the second case, the extent of the limitation will, of course, vary from case to case. These revisions are not a change in our original intent, but the comments did enable us to better express our intent.
In clarification of the first commenter's concerns, we also note that children who must use wheelchairs or who cannot produce speech by any means have impairments that meet or equal the listings. Therefore, we would not be concerned with evaluating the effects of these kinds of adaptations, which do not so much improve the particular function as substitute for it.
With regard to the suggestion that we employ a method similar to the rules for highly structured settings, we believe that the revisions accomplish the end the commenter had in mind, which was to recognize that children who use adaptations may still not be functioning independently, appropriately, and effectively in an age-appropriate manner. We do not believe that there is a valid comparison between a child's ability to function with or without an adaptation and a child's ability to function within or outside of a highly structured or supportive setting. A highly structured setting (such as a special class for children with behavioral problems) is an abnormal environment. In this situation, we need to determine how the child will function outside the setting—i.e., how the child will function in the settings that are normal to children of the child's age—because structured settings may mask how severely impaired—or typical—a child really is compared to other children.
Adaptations, on the other hand, may enable a child to function independently, appropriately, and effectively in an age-appropriate manner—i.e., they may enable the child to do normal activities in normal settings—or, at least, improve that ability. Knowing how the child would function without the adaptation does not really tell us anything about how the child can function. To take an obvious example, many children would have very serious visual impairments if they were not to wear glasses, but can see normally with glasses. However, a child who must use a built-up spoon or a rocker knife has augmented his or her functioning but is obviously still limited in the motor domain.
Comment: One commenter urged us, when applying the policy in § 416.924d(f) of the prior rules, final § 416.924c(f), concerning multidisciplinary therapy, to take into consideration the time commitment necessary for children with cystic fibrosis to perform chest therapy three or four times a day. Although these children may continue to attend school, performing the needed therapy several times a day can be very time-consuming and may seriously impede their ability to keep up with peers. Consideration of this factor may strongly influence a disability determination about these children. Another commenter asked us to remove all references to multidisciplinary therapy and focus only on the time spent in treatment.
Response: We adopted the comments. In the fifth sentence of final § 416.924c(f), we deleted the words, “in order to go,” from the opening clause of the prior language, “If you must frequently interrupt your activities at school or at home in order to go for therapy * * *,” to convey the idea that the therapy may be given at home or school.
We adopted the second comment by changing the heading of final § 416.924c(f) from “Multidisciplinary therapy” to “Time spent in therapy”. In addition, in the first sentence, we changed the phrase, “more than one kind of health care professional”, to “one or more kinds of health care professionals” to indicate that even one kind of therapy can be very time-consuming. The second sentence now refers simply to “therapy,” which may include multidisciplinary therapy. Nevertheless, this paragraph still provides for the situation in which each kind of therapy a child receives may not in itself involve much time but, cumulatively, the time spent in the various modes of therapy is significant.
Comment: One commenter was concerned about the statement in the second sentence of § 416.924d(g) of the prior rules (final § 416.924c(g)) that if a child attends school, “we will consider this evidence.” The commenter was concerned about the situation in which we try, but are unable, to obtain evidence from the school.
Response: We adopted the comment. We revised the sentence to state that if a child attends school, we will consider this evidence when it is relevant and available to us. This revision more accurately reflects our policy and current development procedures and is consistent with the first sentence of the section, which explains that school records and information from people at school who know the child “may” be important sources of information. In some cases, such as allowances in which the child has an impairment that meets or medically equals a listing, or in which it is clear from the evidence that there is no limitation in the child's functioning at school, we may be able to make a decision without obtaining information from the school. The revision, therefore, covers the situations in which we try to get evidence from school but fail, and in which evidence from school is not necessary to reach a decision.
Comment: One commenter said that, since the law mandates that developmentally disabled children be mainstreamed in regular classrooms, it is important to note in the childhood disability regulations that attendance in a regular classroom is not totally indicative of nondisability. We must also consider whether the child can function independently in that classroom in an age-appropriate manner.
Response: We have adopted the commenter's suggestion to add the word “regular” before the word “classroom” in the second sentence of final § 416.924c(g)(2). We also added the words “appropriately, and effectively” to the phrase “to function independently,” in order to include all the characteristics of a child's functioning in a regular classroom that we would consider in our evaluation. We made a similar addition to final § 416.924c(g)(3), adding after “to function” the phrase, “independently, appropriately, and effectively.”
Section 416.924d Individualized Functional Assessment for Children
Comment: One commenter noted that § 416.926a(c), lists the individuals who have responsibility for making determinations of equivalence at each stage of the administrative review process. The commenter noted that we had omitted a corresponding section in § 416.924e stating the responsibility for the individualized functional assessment.
Response: We adopted the comment. We have added a new paragraph (b) to final § 416.924d to list the individuals who have the overall responsibility for the individualized functional assessment. The new paragraph does not contain any changes in policy, but only incorporates our policy as we have been applying it since we first published the prior rules. It is also consistent with the rules stating responsibility for equivalence in childhood claims and residual functional capacity assessments in adult claims. We adopted the first and third sentences of the paragraph from § 416.926a(c), with appropriate modifications to make it relevant to the individualized functional assessment. (In the first sentence, after “designee,” we added the phrase, “of the Secretary.” Since this phrase was missing from the first sentence of § 416.926a(c), we also added it to that sentence in the same place.) We adopted the second sentence from the third sentence of § 416.946, the provision in the adult rules setting out the responsibility for residual functional capacity assessments, again with minor revisions, to make the statement relevant to the evaluation of children. Finally, we redesignated the following paragraphs because of the insertion of the new paragraph.
Comment: One commenter, whose particular concern is the emotional development of young children, made recommendations for improving the descriptions of the social development of newborns and young infants in § 416.924c(b) of the prior rules (final § 416.924d(e)), and the cognitive and social development of older infants and toddlers in § 416.924c(c) of the prior rules (final § 416.924d(f)).
Response: We adopted the language recommended by the commenter with minor amendment. However, in two instances, we used the language the commenter provided but placed it under different domains than were recommended. We also revised the sections of the rules for older children in a similar manner to maintain consistency among the rules and because we believe that the commenter's suggestions have applicability to older children as well. These changes are not substantive; they merely provide greater detail and accuracy to the descriptions we originally published.
In response to the comment, we revised the example of social development for newborns and young infants in § 416.924c(b)(4) of the prior rules (final § 416.924d(e)(4)) to state, “* * * your ability to form patterns of self- regulation, to form and maintain intimate relationships with your primary caregivers, and to exchange a variety of age- appropriate emotional cues and begin to organize intentional behavior * * *.” In § 416.924c(c)(1) of the prior rules (final § 416.924d(f)(1)), we added the following language to the examples of cognitive development in older infants and toddlers: “* * * and by knowing what you want as illustrated, for example, by searching for a toy or asking for a special food * * *.” We also made minor editorial revisions to the sentence to accommodate the new language.
We expanded the examples in § 416.924c(c)(2) of the prior rules (final § 416.924d(f)(2)), describing communicative development in older infants and toddlers by including most of the commenter's more precise language. The new language is, “* * * your ability to communicate your wishes or needs by using gestures or pretend play, and by understanding, imitating, and using * * *.” The commenter had recommended that some of this language be used to describe the domain of social development, but we believe that it more accurately describes communicative development as used in these rules.
In § 416.924c(c)(4) of the prior rules (final § 416.924d(f)(4)), we deleted the phrase, “and emotional bonding with,” from the example of social development and revised the example to state, “* * * your ability to express normal dependence upon, and intimacy with, your primary caregivers, as well as increasing independence from them, to initiate and respond to a variety of age-appropriate emotional cues, and to regulate and organize emotions and behaviors * * *.” We deleted “emotional bonding” because we agree with the commenter that this descriptor is generally applicable only to the youngest infants (i.e., those in the birth to age 1 category); the replacement language is more accurate and detailed.
In § 416.924c(c)(5) of the prior rules (final § 416.924d(f)(5)), personal/behavioral development, we added the phrase, “in responding to limits,” after the phrase, “in adapting to your environment.” This, too, was language the commenter suggested for the domain of social development; however, it comports more closely with our definition of personal/behavioral functioning, which concerns a child's learning and demonstrating self-control. In addition, in § 416.924c(d)(5) of the prior rules (final § 416.924d(g)(5)), we extended this same descriptor to preschool children, for whom learning self-control is also as important as it is for older infants and toddlers. In a related change, we deleted the phrase “self-control” from § 416.924c(d)(4) of the prior rules (final § 416.924d(g)(4)), social development of preschool children.
Although the foregoing comments were confined to children from birth to age 3, we believe that the suggestions made by the commenter about social functioning have applicability for other age groups and that, to maintain consistency among the rules, we made similar changes to the rules for older children. Therefore, to emphasize the continuity of social development across age groups, we have added parallel descriptors for preschool and school-age children and young and older adolescents in §§ 416.924d(g)(4) (for preschool children), 416.924d(h)(4) (for school-age children), 416.924d(i)(4) (for young adolescents), and 416.924d(j)(2) (for older adolescents). The descriptors refer to a child's ability to initiate age- appropriate social exchanges and friendships and to respond appropriately to social environments (i.e., to individuals and to groups) with increasingly complex interpersonal behaviors.
Comment: One commenter seemed pleased that we included responsiveness to stimuli for the youngest group of children, newborns and young infants in § 416.924c(b)(5) of the prior rules. However, the commenter recommended the addition of the phrase, “ * * * and all sensory stimulation,” or the addition of specific descriptions of the other kinds of sensory input that infants experience, i.e., vestibular or proprioceptive stimulation.
Response: In response to the comment, we clarified the descriptor. As written, § 416.924c(b)(5) of the prior rules (final § 416.924d(e)(5)) stated that a child's ability to respond appropriately to visual, auditory, and tactile stimulation was only an example of a child's responsiveness to sensory stimuli, rather than the definition of such responsiveness. Therefore, to make our intention clearer, we rephrased the provision to say: “Responsiveness to stimuli, i.e., your ability to respond appropriately to stimulation, e.g., visual, auditory, and tactile.” Because the sensory responses in the descriptor are only examples, other kinds of sensory input (such as vestibular, proprioceptive) are included. Also, if we were to add a phrase including “all” sensory stimuli, the senses we mentioned would no longer be examples.
Comment: One commenter found commendable the inclusion of the factor of “adapting to the environment” in the personal/behavioral domains for older infants and toddlers in § 416.924c(c)(5) of the prior rules and for preschool children in § 416.924c(d)(5) of the prior rules. The commenter observed, however, that adaptation to the demands of the environment and the settings in which people function is a continuous process throughout life and a primary contributor to functioning at all ages. Therefore, the commenter recommended that we add similar language to the sections applicable to school-age children, young adolescents, and older adolescents.
Response: We accepted the comment and added the appropriate language to final §§ 416.924d(h)(5) (for school-age children) and 416.924d(i)(5) (for young adolescents). We also added a cross-reference at the end of § 416.924d(j)(1), for older adolescents, which incorporates by reference the descriptions of domains and behaviors in § 416.924d(i), the section for younger adolescents, and therefore accomplishes the same end.
Comment: Another commenter provided many comments concerning the area of communicative development and functioning in children. The commenter recommended that we maintain continuity with our description of the communicative ability of children ages 1 to 3 years in § 416.924c(c)(2) of the prior rules—i.e, to eventually form two-to-four word sentences—by providing a description of the ability of children from age 3 to 6 years to form complete sentences in grammatical form. The commenter also noted that our descriptor for children age 6 to 12 years in § 416.924c(e)(2) of the prior rules described the ability to communicate pragmatically “or” conversationally. The commenter pointed out that by age 6 to 12 years a child should be able to communicate both pragmatically and conversationally; therefore, the commenter recommended that we use the conjunctive “and” rather than the disjunctive “or.” Similarly, the commenter also recommended that the description of communication for young adolescents in § 416.924c(f)(2) of the prior rules should include the ability to express complex thoughts, with increased vocabulary, in a spontaneous and interactive manner.
The commenter also noted that in § 416.924c(d)(4) of the prior rules for children age 3 to 6 years, we included the ability to relate to a group, but we did not mention group relationships (except obliquely) in the communicative and social domains for subsequent age groups. The commenter also thought our descriptors varied from age group to age group. The commenter remarked that by the ages of 6 to 12, a child should be able to initiate communication in all communication environments and with all communication partners. Finally, the same commenter observed that the examples given to guide determination of an older adolescent's ability to do work-related activities did not include any statements about communication proficiency. The commenter recommended that we include communication proficiency in the factors to be considered regarding older adolescents.
Response: We adopted the comments. In final § 416.924d(g)(2) (§ 416.924c(d)(2) of the prior rules), we added the words, “using simple sentences in grammatical form,” to the end of the descriptor of the communicative domain for preschool children. In final § 416.924d(h)(2) we changed the conjunction “or” to “and” in the three places in which it appeared, and added language for consistency with other rules, as already described. The descriptor now reads, “* * * your ability to communicate pragmatically * * * and conversationally (i.e., to exchange information and ideas with your school classes, with peers, and family) in a spontaneous, interactive, sustained and intelligible manner * * *.” In final § 416.924d(e)(2), (f)(2), (g)(2), (h)(2), (i)(2), and (j)(2), we added the words “spontaneous, interactive” or similar language to the descriptor of communication; even though the comment was directed only at final § 416.924d(i)(2), for young adolescents, we believe that it is relevant to all of the age categories.
To address the commenter's concerns about the ability of older children, as well as preschool children, to relate to, and communicate with, groups as well as individuals, we made the following changes: For school-age children, as suggested, we changed the phrase, “in your classroom,” to “with your school classes” in the parenthetical statement in final § 416.924d(h)(2); and, in final § 416.924d(h)(4), we deleted, “to your siblings and parents or caregivers,” and added the more precise language after the word “relate,” “appropriately to individuals and groups (e.g., siblings, parents or caregivers, peers, teachers, school classes, neighborhood groups) * * *.”
For young adolescents, in final § 416.924d(i)(2), beginning with the word “conversationally,” we have replaced the remainder of the clause with, “* * * to converse spontaneously and interactively, expressing complex thoughts with increasing vocabulary in all communication environments (e.g., home, classroom, playground, extra-curricular activities, job) and with all communication partners (e.g., parents or caregivers, siblings, peers, school classes, teachers, other authority figures) * * *.” We also revised the paragraph on social function, final § 416.924d(i)(4), to be consistent with other corresponding sections. Finally, in final § 416.924d(j)(2), we have added a new third sentence to address communication in older adolescents.
Comment: The same commenter also offered an additional comment concerning children who are nonverbal, particularly children with the physical impairment cerebral palsy. The comment was directed specifically at the descriptor for communicative development for preschool children in § 416.924c(d)(2) of the prior rules (final § 416.924d(g)(2)), which refers to a child's “* * * telling, requesting, predicting, and relating information * * *.” The commenter noted that children with cerebral palsy who are nonverbal may be able to make some guttural noises and gesticulations that approximate interactive communication, but that are so limited that they do not constitute effective, meaningful communication. The commenter was concerned that the language of our rules might be misinterpreted to include such output as effective functioning. The commenter, therefore, recommended that we add a reference to the development of interactive communicative skills, which would ensure that the more limited expression of nonverbal children not be construed as “normal.”
Response: We adopted the comment in final § 416.924d(g)(2) by adding the word “interactive” to the descriptor. As with all functions described by these rules, it was always our intent that, fundamentally, any evaluation of a child's ability to communicate would have to consider its practical success as compared with age-appropriate norms, but we agree that the simple addition of the word “interactive” will make our intent clearer. Because we believe that the comment is relevant to other age groups as well, and for the sake of consistency among the rules, we have also made the same addition to the sections on communication for the other relevant age categories.
We would like to point out, however, that the commenter described a communication impairment that would meet the criteria of a listing; in fact, a child with cerebral palsy need not have as severe a communication impairment as described by the commenter to meet the requirements of our listings. Listing 111.07 may be satisfied by a child with cerebral palsy if the child also has a “significant interference with communication due to speech, hearing or visual defect”; the child need not be nonverbal. Moreover, children with other physical impairments that cause the level of speech impairment described by the commenter may meet Listing 2.09 if they are unable to produce by any means speech which can be heard, understood, and sustained. Nevertheless, there will be children who have impaired communication abilities that are not of listing-level severity, and we want to ensure that the descriptors for evaluating communication are complete.
Comment: One commenter was aware that we had created charts for our manual instructions to display the functional descriptors in § 416.924c in prior rules. The commenter noted that the charts include “conceptual growth” under the cognitive domain for young adolescents, a descriptor that was not in the regulations section. The commenter suggested that we add it.
Response: As suggested, we added the term, “conceptual growth,” to final § 416.924d(i)(1), the cognitive domain for young adolescents.
Comment: Several comments were made concerning the discussion of functioning of older adolescents in § 416.924c(g) of the prior rules (final § 416.924d(j)). Two commenters noted that functional domains and behaviors and their descriptors were not included for this age group. Another comment recommended that we delete the reference to remembering “short instructions” in the discussion of the school activities that would be considered as evidence of an older adolescent's ability to function in a job setting because “there is more to employability than just taking 'short' instruction.” Finally, one commenter thought that there was an implicit presumption in § 416.924c of the prior rules that older adolescents without impairments function like adults. The commenter observed that in some domains, older adolescents may function in a manner similar to that of adults, but in areas involving cognitive skills and judgment, their functioning is less similar to that of adults.
Response: We adopted the comments about adding a reference to the functional domains and behavior for older adolescents by adding at the end of final § 416.924d(j)(1) (§ 416.924c(g)(1) of the prior rules) a cross-reference to the descriptors in final § 416.924d(i)(1)-(5), which are also applicable to older adolescents. For consistency throughout the rules, we also added statements to the first sentences of final § 416.924e(d)(2) and (3) referring to the domains. We also changed “short instruction” to “simple instruction,” which is not only more accurate, but consistent with the description of basic work-related activities in other regulations sections (e.g., § 416.921).
Finally, we do maintain, as stated in final § 416.924e(d)(1), that children aged 16 to 18 who do not have impairment-related limitations are ordinarily expected to be able to do the kinds of physical and mental activities that are expected of persons who are at least 18 years old. We believe that this is a reasonable policy because it is consistent with current knowledge about the abilities of 16- and 17-year-olds as compared with 18- and 19-year-olds. For the same reason, we have articulated the principle in final § 416.924a(d)(4) that older adolescents generally share with the youngest adults (i.e., 18-years-olds) the same abilities to adapt to work-related activities despite a severe impairment(s).
Comment: Six commenters submitted comments that discussed in identical or similar language the efficacy of these rules as they apply to the evaluation of children with physical impairments. Several of these commenters said that, although the domains of functional assessment in §§ 416.924c and 416.924d of the prior rules (final §§ 416.924d and 416.924e) are reasonable for determining developmental disability, they are insufficient for determining physical disability. They also said that the regulations, in general, fail to provide appropriate guidance for the evaluation of physical impairments. One commenter said that 30 percent of children suffer from physical impairments, many of which do not have much effect on development.
One commenter thought that the problem was that we had borrowed developmental terms from the pediatric community that have received meanings which are used only in certain contexts. The commenter said that, because we were implicitly altering the meanings of these terms and using the concept of “domains” as an all-inclusive framework, we were increasing the potential for confusion and making our adjudications more difficult.
Response: We disagree with the commenters' view that the domains of functional assessment are not adequate for the purpose of evaluating physical disability in children.
We first repeat the definition of “domains” in final § 416.924b(b)(5), “Domains and Behaviors,” in these final rules:
The terms “developmental domains,” “functional domains,” and “behaviors,” which we use when we perform an individualized functional assessment, refer to broad areas of development or functioning that can be identified in infancy and traced throughout a child's growth and maturation into adulthood. The domains describe the child's major spheres of activity—i.e., physical, cognitive, communicative, social/emotional, and personal/behavioral. In addition, there are certain areas of behavior that are applicable to specific age categories (i.e., responsiveness to stimuli; concentration, persistence, and pace). In these regulations, the term “developmental domains” is generally used when we discuss younger children * * *; the term “functional domains” is generally used when we discuss older children * * *.
This provision shows that the distinction between “developmental domains” and “functional domains” has reference only to age groups, not to the nature of the child's impairment, as the commenters seemed to have assumed. More importantly, the provision clearly states that the domains applicable at any age describe the child's functioning, the child's “major spheres of activity.” Thus, they encompass and reflect all that a child can and cannot do given his or her impairment(s), regardless of the nature of the impairment; they are not confined merely to “development.”
From the perspective of these rules, we think the commenters draw an artificial distinction between children with “developmental disabilities” and children with “physical disabilities” which these rules neither state nor imply. The commenters seem to believe that there is a distinction between conditions that may inherently limit or delay a child's “development” (e.g., mental retardation, cerebral palsy) and those that supposedly do not limit development but may limit a child's functioning (e.g., asthma, seizures, rheumatoid arthritis).
We do not maintain such a distinction in these rules because we believe that it would be artificial in the context of our program and that it has several flaws. The most obvious flaw is that many children who are regarded as “developmentally disabled” by other public laws and agencies have physical impairments as the basis of their developmental disabilities. Another flaw is in the implication that children with physical impairments are not affected in their development by their physical impairments. Certainly, all children with physical impairments cope differently with their impairments, depending on their individual capabilities and temperaments, and the nature of external support from their environments. But this is a highly relative matter, and it is likely that the development of all physically impaired children is affected to one degree or another.
The most important flaw in the distinction, however, is the implication that children with “developmental disabilities” and those with “physical disabilities” are somehow essentially different from one another—as if the things they are expected to do as children are altogether different. This is not the case. All children are expected to do the same things in childhood: to play, to learn to walk and talk, to learn to read and write, to live with adults and children, to learn to care for themselves, to become task-oriented. How well children do these things depends on their strengths and weaknesses, their skills and deficits, their abilities and limitations. However, because all children are expected to do these things, we evaluate each child from the perspective of the things that all children are expected to do.
Moreover, this is the perspective from which the Supreme Court directed us to evaluate functioning in children, to make “[a]n inquiry into the impact of an impairment on the normal daily activities of a child of the claimant's age[mdash ]speaking, walking, washing, dressing, and feeding oneself, going to school, playing, etc. * * *.” Zebley, 110 S.Ct. at 896. The Court did not direct us to consider developmentally disabled children on the one hand and physically disabled children on the other.
These rules, therefore, require an evaluation of what the child is doing in all the major domains of functioning and behaviors appropriate to the child's age: physical, cognitive, communicative, social/emotional, etc. This determination is made irrespective of the nature of the child's impairment because the point is to determine the actual outcome of the impairment; that is, the impact on the child's functioning in practical, specific terms. For example, a child who has difficulty breathing and who experiences shortness of breath, or a child with limited strength and endurance may have difficulty keeping pace with peers at school; in such a case, a limitation in the area of concentration, persistence, or pace would be indicated. If a physical impairment causing a motor deficit limits a child's ability to engage in outdoor play, playground games, or sports, we would indicate some limitation in the motor domain. A child who has problems with eating, or who is susceptible to infection or other chronic illness, may be weakened by the condition or may experience pain; the functional effect of these symptoms could be manifested in diminished ability to concentrate, persist, or maintain pace, in social functioning, in motor functioning, or in any of the other domains or behaviors, depending on the specific impact the impairment has on the specific child. A child with a fine motor impairment that limits the ability to perform age-appropriate self-care activities (such as dressing), would have a limitation in the personal/behavioral domain. A child who has difficulty seeing or hearing may have problems in one or more of several functional areas, including cognitive, communicative, motor, social, and personal/behavioral. Thus, a physical impairment could cause limitation in any of the domains and behaviors considered in the evaluation of childhood disability and would be evaluated according to its impact on the child's functioning.
Finally, we do not believe that our use of the domains as an all-inclusive framework would confuse our adjudicators. Any programmatic approach to evaluating disability—in a child or adult—must necessarily be tied to a scheme of some kind that will allow adjudicators to organize information about how the impairment affects the person. We know from the past year-and-a-half of implementation experience that these rules have been effective and fair. The rules have provided adjudicators a means of organizing the information they obtain about child claimants from medical and nonmedical sources, employing functional domain terminology with which they already had some familiarity because we adopted it from the childhood mental listings. As we have said, we also believe that the rules provide a means of evaluating the effects of all impairments in all children, so it is also fair to the children. For this reason, we believe that we have made a difficult and complex task more manageable and less confusing than it would have been without such a framework.
Comment: One commenter suggested that we should add provisions that allow for nondevelopmental factors to be assessed outside the domains. The commenter also stated that, to the extent that domains are used in a determination, we should fully explain how they are being used, and that whenever examples are given in the rules, we should provide examples of physical impairments as well as developmental and mental disorder examples. The commenter also believed that the domains and criteria for age-appropriate activity should be revised to be more representative of children with physical impairments. For instance, this commenter and one other recommended that we revise § 416.924c(a)(2) of the prior rules (final § 416.924d(c)) to state: “The following are domains of development, functioning and some of the specific behaviors and capacities that should be addressed in an individualized functional assessment * * * (viii) breathing; (ix) eating and eliminating; (x) seeing and hearing; (xi) ability to resist disease and function in the physical world (i.e., cope with the environment); (xii) strength and endurance; and (xiii) other physical and mental functions considered a part of normal function.” The two commenters also recommended changes in § 416.924c(c)(5), (d)(5), (e)(5), and (f)(5) of the prior rules to insert the word “functioning,” and a new sentence for § 416.924e of the prior rules to convey the idea that the domains were not all-inclusive.
Response: For the most part, we have not adopted the commenters' suggestions. We believe our response to the previous comments explains why it is unnecessary for “nondevelopmental factors” to be assessed outside the functional domains and behaviors that we use to assess children's impairments. We do not believe it is necessary for adjudicators to explain how the functional domains and behaviors are being used in any particular determination, because adjudicators use them in the manner described in the previous response and as appropriate to the case. We explain elsewhere that we do not believe examples are universally helpful to adjudicators because of the limitations inherent in generalizing an example to any specific case. However, in response to the commenter, we have added an example of a physical impairment to final § 416.924e(c)(2)(i). We have not revised the functional domains and behaviors to be “more representative of children with physical impairments” because, as we explained in the previous response, we do not distinguish categories of children in terms of the nature of their impairments but, rather, we evaluate all children in terms of the functional impact of their impairments.
In response to the commenter who recommended that we add several “specific behaviors and capacities” to the functional domains and behaviors in these rules, we do not believe it is appropriate to add capacities such as breathing, eating, eliminating, and strength as though they were separate and apart from the domains of functioning or specific behaviors that we consider for each age group. The domains and behaviors already take these limitations and impairment manifestations into account, not so much in terms of what they are, but in terms of how they affect the child's ability to function “independently, appropriately, and effectively in an age-appropriate manner” as shown by the things that the child actually does. Moreover, in response to the commenter who asked us to convey that the domains are not all-inclusive, we would say that, by definition in these rules, the domains and behaviors are all-inclusive and are intended to cover every possible activity a child may have. Finally, we could not adopt the other proposed language change in § 416.924c(c) through (f) of the prior rules (final § 416.924d(g) through (i)) because “functioning” is not distinct from “adapting”: All children with all impairments (including physical) must adapt to their environments in order to function as effectively as possible in those environments.
Comment: One commenter who thought that the use of “domains” did not address physical impairments said that the determination of physical disability seems central to the notion of disability for adults and is clearly relevant to the functional assessment available to adults.
Response: We believe that we have made it clear that we agree with the comment and that these rules accomplish the same thing for children. The evaluation of disability in adults is more readily and observably divisible into physical and mental disability because the world of work activity is divisible into physical functions and mental functions, and the workplace is the context against which we must evaluate adults. The rules for the evaluation of disability in children are, in effect, more broadly based than the rules for the evaluation of adults because we must consider children in the context of their entire lives, 24 hours a day. This does not mean that the evaluation of physical disability plays a lesser role in the determination of disability for children. It means that the limitations imposed by a child's physical impairment(s) are evaluated in terms of the child's activities in all areas of living. This means that we assess a child's physical impairments in terms of all of the domains and behaviors and the myriad functions they subsume.
Comment: Two commenters observed that, even when a child's physical impairments do impede development, physicians and others are not accustomed to evaluating the impairments in developmental terms. For example, a child missing several fingers would not be described as having the fine motor developmental skills of a child half her age; she would merely be described as missing several fingers. Similarly, the impairments of children with asthma or cystic fibrosis are not described in developmental terms. Although these children may have marked restrictions in daily activities, “* * * most health care professionals consulted will not describe limitations in those terms.” Therefore, these commenters thought that, if we were going to use a “developmental model” for the assessment of impairment in all children, we must explain this decision to the public, the medical community, and the consulting examiners we employ, and must ask for such “developmental appraisals.”
Response: As we have explained, we do not use a developmental model. What we need to know is how the impairment(s) specifically affects the child's functioning, information that we will obtain from medical and nonmedical sources, for instance, how the child missing fingers on one hand is able to play, dress herself, feed herself, and so on. We will compare this information with the activities that are age-appropriate for the child and determine whether the child's impairment(s) substantially reduces his or her ability to do those things that are age-appropriate.
We should add, however, that the evidence we receive in documentation of the claims of young children (from birth to age 3, 4, or 5) often contains the results of screening and assessment devices used by pediatricians, early child development specialists, and therapists to evaluate a child's condition and to plan appropriate interventions. These measures of a child's growth and progress are often expressed in developmental terms, i.e., as a proportion of the child's chronological age. Even when a child has a physical impairment, a pediatrician, therapist, or other health care professional may evaluate the child in “developmental” terms, depending on the nature of the impairment and the purpose of the evaluation. For example, if a 3-year-old child who was missing several fingers required therapeutic intervention, an occupational therapist would be interested in assessing the extent (in terms of age level) of the child's motor skills in order to match the child's skill level with appropriate interventions.
Section 416.924e Guidelines for Determining Disability Using the Individualized Functional Assessment
Comment: We received many comments stating the same four recommendations reflecting a general concern that the guidelines for the individualized functional assessment and accompanying examples might be applied rigidly or mechanically.
Comment: The commenters feared that, even though we state that the examples are not all-inclusive, there may be a tendency to use them as hard-and-fast rules. The first of the four recommendations had several aspects. It was suggested that we add a provision that requires adjudicators to demonstrate flexibility in decision making by taking into account all relevant evidence before rendering a final individualized functional assessment. Four commenters suggested that the regulations should require adjudicators to demonstrate their application of the individualized functional assessment rules in a descriptive narrative or findings of fact. Several commenters also suggested that we include language from the preamble to the prior rules about the "initial guidelines" in the rules themselves.
Response: We adopted the comment about strengthening the rules that require consideration of all the evidence. The second sentence of final § 416.924d(b) now states: "This assessment is based on all of the evidence we have, including any statements regarding what you can still do that have been provided by treating or examining physicians, consultative physicians, or any other medical or psychological consultant designated by the Secretary." As we explained in an earlier response, we copied this sentence from § 416.946. This provides consistency between the adult and childhood rules while, at the same time, it makes the statement that the commenters requested.
We also partially adopted the comment that asked us to include language from the preamble throughout the rules, although we did not include the specific statements some of the commenters recommended. We identified language in the preamble (56 FR at 5542) that we believe clarifies two statements in final § 416.924e(b). In the preamble to the prior rules, we explained that the guidelines for individualized functional assessments are based on the rules and principles already present in the listings for childhood mental disorders. One of those principles is that a finding of "marked" limitation is a finding about how a child is functioning in a developmental or functional domain. Our guidelines therefore state, in the manner of 112.00C of the listings, that "marked" and "moderate" do not connote a particular number of restricted activities or functions, but the overall degree of restriction or combination of restrictions. To emphasize our original intent that this means the overall degree of restriction in a developmental or functional domain or behavior, we have added the phrase, "in a domain or behavior," to the last two sentences of final § 416.924e(b). We made similar additions in final § 416.924e(b)(1), (c)(2), and (d)(2).
We did not adopt the comment that asked us to require in the regulations that adjudicators prepare a narrative rationale of the individualized functional assessment. This is because we believe there is sufficient indication in the regulations of the requirements of a determination or decision. For instance, with respect to the individualized functional assessment step, final §§ 416.924d(a) and 416.924c(a) provide that we will consider all information in the case record that is relevant to the claim and all of the factors set forth in §§ 416.924 through 416.924c, the rules that describe the steps of the childhood sequence, the effects of age, and other factors. Other rules, such as those at §§ 416.927 (evaluating medical opinions) and 416.929 (evaluating symptoms, such as pain) also provide specific requirements for the evaluation of cases involving those factors. In addition, subpart N of part 416 of 20 C.F.R. provides rules directing the contents of notices of initial and reconsideration determinations, and hearings and Appeals Council decisions. The more detailed instructions for practical implementation of the rules properly belong in manual instructions, just as they are for all other issues, such as the adult residual functional capacity assessment. In fact, our manual instructions already require the kinds of narrative explanations and findings of fact requested by the commenters.
Comment: The commenters' second recommendation was that we repeat in the paragraphs illustrating disability for each age group the cautionary language from the third sentence of § 416.924e(a): "The examples in this section are only guidelines to illustrate severity and are not all-inclusive rules."
Response: We adopted the comment. In fact, we already make a similar statement in final § 416.924e(d)(1)(ii), the section for older adolescents: "As in the examples for younger children, the guidance for evaluating older adolescents is not intended to be a standard by which all cases must be judged. Each case must be evaluated on its own merits using the principles and guidelines of all of the regulations addressing childhood disability." (The prior rules stated that the guidance was "not intended to be all-inclusive, or a standard by which all cases must be judged." We deleted the words, "all-inclusive, or," because they are redundant of the remainder of the statement, that the guidance is not "a standard by which all cases must be judged." However, we have still retained the language in final § 416.924e(a).)
In response to the comments—and because the same guidance is applicable to the evaluation of children from birth to the attainment of age 16—we have now added these two sentences (modified to be appropriate to their respective sections) to final §§ 416.924e(c)(1), "Young children," and 416.924e(c)(2), "Older children and young adolescents."
Comment: The third and fourth recommendations were that we commit to conducting special monitoring of the use of the individualized functional assessment rules, and that we conduct "adequate" training of all appropriate personnel to ensure proper implementation of the guidelines.
Response: We have conducted adequate monitoring and training on the implementation of the new childhood rules, as the commenters recommended. For example, during the first few months after implementation we used an "Early Implementation System," which was a special, multilevel review to ensure that all of the new childhood rules were properly implemented. Since that time, we have continued to carefully monitor the use of the rules at the State Agency, Regional Office, and Central Office levels. Moreover, the training we conducted was one of the most extensive training efforts we ever mounted, and was accompanied by a large student training manual. Since completion of the training, we have also answered in writing questions we have received from the field; the questions and answers are provided to all field personnel, not only those who asked the questions. We also share information about our actions on case reviews with all adjudicators as part of our ongoing commitment to education and consistency.
Comment: Some commenters said that the specific "mathematical" definitions of "marked" and "moderate" limitations for very young children in final § 416.924e(b)(1) do not conform with the idea that the rules are meant to be "guidelines" and a "framework." They were concerned that these definitions have the potential of being applied rigidly and mechanically by disability examiners, who may rely entirely on various test results. One commenter asked what evidence we would use to make these very refined judgments regarding a child's functioning at 2/3 to 3/4 of chronological age. A few commenters remarked that it was not clear what the measurable difference in a child's social functioning is between 2/3 and 3/4 of chronological age, or how this narrow gap would be determined in individual cases.
To address these concerns, one group of commenters recommended that we delete the arithmetical definitions of "marked" and "moderate" for very young children and redefine them in qualitative terms. Another commenter, questioning whether tools exist for such precise numerical determinations, recommended that we include the word "approximately" when referring to the numerical measures throughout the rules.
Response: We did not adopt the comments. We do not think that the use of numerical measures of developmental milestones threatens the flexibility inherent in the individualized functional assessment process. The examples in the guidelines that use fractions of chronological age to describe a child's functioning do not represent the results of a single test or, indeed, of test results alone, and the determinations we make based on the guidelines do not rest on test results alone. The results of developmental tests are only one component in the whole assessment of how a young child is functioning, which includes not only quantitative evidence but also qualitative findings based on clinical observations and conclusions.
With regard to the comment asking what evidence we could use to make refined judgments about a child's achievement of developmental milestones, there are tests that measure this functioning. Such tests include, but are not limited to, the Cattell Infant Intelligence Scale, the Bayley Scales of Infant Development, and the Revised Stanford-Binet. Development is sometimes expressed in test results as a developmental quotient (DQ), or the relation between developmental age and chronological age as determined by specific standardized measurements and observations. With regard to the comments about the precision of the measurements, there are valid, reliable tests of the attainment of developmental milestones, such as those mentioned above, that are generally used in clinical settings for the determination of the developmental status of infants and toddlers. We believe that our pediatricians and other specialists in childhood medicine will be able to make the kinds of refined clinical judgments required of these cases. The guidelines reflect the kinds of evidence that we frequently find in the record.
Comment: Some of the foregoing commenters noted that the regulations provide only two examples of how the terms "marked" and "moderate" are to be applied for children aged 3 to 16. One commenter requested that we add to final § 416.924e(c)(2) an example of a physical impairment(s) that does not meet the listings but is disabling because the existing two examples are both of mental impairments. Several commenters also recommended that we include in the regulations additional examples of application of the guidelines to specific patterns of childhood dysfunction.
Response: In response to the comments, we have added an example of a physical impairment to final § 416.924e(c)(2)(i). Beyond this, we decided not to provide additional examples. We believe that any example we might devise would have to be as clear and unambiguous as we could possibly make it; and we believe that such an example would have to be so obvious that it may not provide appropriate guidance. Moreover, we question whether there are "specific patterns of childhood dysfunction" that lend themselves to illustration. In any particular child there may be a specific pattern of dysfunction, but that pattern is unique to that child; it would be hazardous to generalize an example, on the basis of which someone might overlook or misinterpret evidence that is peculiar to another child's claim.
Comment: One commenter had difficulty understanding the third sentence in § 416.924e(c)(2). The commenter said that, instead of saying that the term "moderate" and the overall level of disability at less than the listing level are "based on comparison with" listing level severity, we should say they are "established in relation to" the descriptors of listing-level severity. The commenter also suggested that we add a new fourth sentence stating that the term "moderate" signifies a lesser level of severity than the term "marked."
Response: We did not adopt the comments. We believe the phrase, "based on comparison with," in the third sentence of final § 416.924e(c)(2) conveys our intent more clearly and accurately than does the suggested alternative phrase, which we assume was merely an editorial suggestion and was intended to mean the same thing. We did not adopt the commenter's second recommendation because we believe the general reader of the rules—and, certainly, our adjudicators—will have no difficulty understanding that a "moderate" limitation of functioning is less severe than a "marked" limitation.
Comment: One commenter wanted us to delete the word "simple" from "simple instructions" and "simple decisions" in § 416.924e(d)(2) because employability entails more than the capacity to handle simple instructions or decisions.
Response: We did not adopt the comment because the capacity to handle simple instructions is a basic work activity, as set forth in § 416.921(b)(3).
Comment: One commenter thought that there was a new term, "a substantial loss or deficit of capacity," in § 416.924e(d)(4) and wondered what it meant. The commenter said that if "substantial" means "moderate," we should employ that term since it is already in use. If "substantial loss or deficit" has a different meaning, we should explain and justify it.
Response: We adopted the comment. The phrase, "substantial loss or deficit of capacity" is not a new term but a logical extension of the basic definition of disability as it pertains to older adolescents. That definition, in § 416.924(a)(3), states, in pertinent part, that disability means, "* * * your impairment(s) must substantially reduce your ability to * * * acquire the skills needed to assume roles reasonably expected of adults * * *." In final § 416.924e(d)(4), we take the phrase "substantially reduce" from the definition in § 416.924(a) and state more explicitly how an older adolescent might experience such a substantial reduction in the ability to acquire the skills needed to assume roles reasonably expected of adults. Thus, by "loss" we mean that an older adolescent may have had the capacity for work-related physical and mental activities but have lost that ability through traumatic or degenerative impairment; by "deficit" we mean that the older adolescent may not have had such capacity at any time because of physical or mental deficits ensuing from a preexisting impairment, such as a congenital or developmental disorder. For this reason, we will continue to use the phrase in the rules.
Since the term "substantial" comes from the definition of disability in § 416.924(a)(3), it does not mean "moderate"—it equates with disability. We agree, however, that the section does not give the level of guidance that the preceding sections do for younger children about what it means for an older adolescent to be disabled. Therefore, in response to the comment, we have revised § 416.924e(d)(4) to incorporate guidance from our manual instructions that implement this section. In new subparagraph (d)(4)(i) of final § 416.924e we state that the term "substantial loss or deficit" is not a precise number, percentage, or other quantitative measure. Then, in new subparagraph (d)(4)(ii), we explain that the term means that an older adolescent is unable to meet the basic physical demands of at least "sedentary" work, as that term is defined in § 416.967; or the basic mental demands of "unskilled" work, as defined in § 416.968; or has an impairment(s) that would severely limit the potential occupational base of a person age 18-45 and would justify a finding of inability to perform other work even for a person with favorable age, education, and work experience, as set out in appendix 2 to subpart P of part 404 of 20 C.F.R. The last clause, especially, recognizes children with combinations of impairments and with nonexertional limitations, which may result from many mental and physical factors, including pain.
For consistency with these revisions, we have also added to the cross-references in the second sentence of final § 416.924e(b)(3), cross-references to §§ 416.968 and 416.969a ("Exertional and nonexertional limitations").
Our justification for this policy is in final § 416.924e(d)(1), which we have not revised. In paragraph (d)(1) we provide that children aged 16-18 are closely approaching adulthood and can be evaluated in terms that are the same as, or similar to, those used for the evaluation of the youngest adults; i.e., those in the age 18-45 category (see § 416.963(b)). We go on to state that older adolescents who do not have impairment-related limitations are ordinarily expected to be able to do the kinds of physical and mental activities of individuals who are at least 18 years old.
Section 416.926a Equivalence for Children
Comment: We received only favorable comments about our addition of the new policy that revises the concept of "equivalence to the Listing of Impairments" in SSI children's claims to include the concept of "functional equivalence" to the listings. However, we received many suggestions for clarifying and augmenting the explanations of the new rules. The commenters thought that, because the functional equivalence policy was complex and unfamiliar, it was important that we provide as much detail as possible in the regulation section itself so that all adjudicators would understand and apply the new rules in the same way. Several commenters also said that § 416.926a should explain the "thought processes" an adjudicator could employ to make a finding of functional equivalence; otherwise, the functional equivalence principle might be under-utilized. One suggestion was that we incorporate into the rules the more detailed instructions in our operating manuals and training guides. One commenter suggested that we add subheadings of "medical equivalency" and "functional equivalency," to highlight the differences and the novelty of the functional equivalence policy.
Response: Although we did not adopt all of the comments, we have adopted some of them, as we explain in several of the responses below. We did not adopt the suggestion that we incorporate the longer explanations of the principles underlying "functional equivalence," which are now contained in our operating manuals and various training guides. In our view, these lengthy explanations are not substantive rules and should not be included in the Code of Federal Regulations.
We did not adopt the comment suggesting that we add subheadings that would distinguish functional equivalence from medical equivalence. We do not believe, in light of our experience using the rules, that it is necessary to highlight the approach, since our adjudicators are now well aware of its existence and have been trained in how to apply the policy. Moreover, we are concerned that if we were to highlight the functional equivalence policy in this way we might create the mistaken impression that "functional equivalence" is another step in the sequential evaluation process, distinct from and subsequent to the third, "meets or equals" step. In fact, the policy of functional equivalence is only a facet of the third step of the sequence, and provides another way in which to determine whether an impairment or combination of impairments is equivalent to any listed impairment.
Comment: Three commenters provided comments about the second sentence in § 416.926a(a) which reads as follows:
While all possible impairments are not addressed within the Listing of Impairments, within the listed impairments are all the physical and mental functional limitations, i.e., what a child cannot do as a result of an impairment, that are considered severe enough to prevent a child from functioning independently, appropriately, and effectively in an age-appropriate manner.
Two commenters said that there was no "documented basis" for this claim. The commenters repeated that many functions, such as "breathing, eating, eliminating, immunity, strength and endurance," were not dealt with in functional terms that capture all limitations. The third commenter thought that the sentence was confusing because the listings do not contain all functional limitations.
Response: With regard to the first comment, we have already explained in our responses to the comments about § 416.924d our policy that the kinds of physiological functions the commenter lists (breathing, eating, etc.) can and must be translated into the kinds of activities that children do. These activities are in fact covered by the domains we have provided. We, therefore, disagree with the comment.
All listing-level physical and mental functional limitations are in the listings because of the "paragraph B" (and "C") criteria of the childhood and adult mental disorder listings and Listing 112.12 in the childhood mental disorder listings. These sections consist of listing-level functional criteria stated in terms of the same domains of functioning we use in the childhood disability rules, the same domains that, as we have already explained under the comments regarding § 416.924d, do include all of the functions performed by children. As we noted in the preamble to the prior rules (56 FR at 5544), aside from the many specific functional limitations stated in the listings (such as deafness or marked impairment of ambulation), the functional criteria of the mental listings provide "another, comprehensive way to look at the functional effects of impairments." These criteria demonstrate a way to consider the practical effects on functioning of any impairment or combination of impairments in terms of adaptive activities, socialization, personal/behavioral functioning, and so on.
Comment: Two commenters suggested that we revise the rules to acknowledge that both the listings and the equivalence examples were limited, since both consist of "a list" which is inherently incomplete and could be out-of-date. One commenter suggested language for § 416.926a(a).
Response: We did not adopt the comment because we do not agree that the listings are inherently incomplete for the narrow purpose of establishing functional equivalence, even though we do agree that the listings do not list every possible diagnosis or combination of diagnoses a person might have. Moreover, we continually strive to ensure that the listings are up to date and reflect current medical knowledge. However, if a listing may be out of date, one of the purposes of our equivalence policies is to deal with the situation. For instance, equivalence permits us to substitute more up-to-date imaging techniques for x-ray findings in the listings. Nevertheless, we do not maintain that the list of examples of functional equivalence is an all-inclusive list. Rather, as we explain in the responses that follow, we have made several revisions to § 416.926a that are designed to remind our adjudicators not to limit their evaluations to the examples found in final § 416.926a(d).
Comment: One commenter said that the equivalence regulation makes no mention of symptoms or the effects of medications. The commenter noted that the Supreme Court had specifically criticized our prior equivalence policies in this regard. The commenter suggested that we add language from our training manual to the section on functional equivalence that would direct the consideration of a child's symptoms and the effects of medications and that would indicate that symptoms can be the basis for a finding of reduced functioning and, therefore, of equivalence.
Response: We have not explicitly adopted the comments in these rules; however, they have been obviated by other rules that we have already referenced or discussed above (e.g., §§ 416.929, 416.924c). We have also addressed them in the reorganization and revision of the childhood disability rules in §§ 416.924 through 416.924e.
As a preliminary matter, we direct the attention of the commenter to the third sentence of § 416.926a(a), which provides explicitly that we will consider symptoms in our equivalence determinations. The fourth sentence of the paragraph also states that we will consider "all relevant evidence" in a child's case record. Furthermore, as we have explained elsewhere in this preamble, we intend each rule in these final regulations to be read in the context of all the other rules, including existing regulations that are not part of these final rules. Thus, § 416.926a(b)(1) and (2)—which describes "medical" equivalence—states that we will consider a child's "medical findings" when we decide equivalence. The term "medical findings" is a term of art in our rules, defined in § 416.928 and in the last sentence of § 416.925(c) as meaning "symptoms, signs, and laboratory findings." These are some of the oldest terms in our rules and are well-known to our adjudicators.
The rules on the evaluation of symptoms, including pain, already mentioned above in another response, include sections on the role of symptoms at each step of the sequential evaluation process, and take cognizance of the childhood disability rules, including the rules on functional equivalence. Thus, in § 416.929(d)(3) of the final rules addressing the evaluation of symptoms, headed "Decision whether the Listing of Impairments is equaled," we state: "If you are a child and we cannot find equivalence based on medical evidence only, we will consider pain and other symptoms under § 416.926a(b)(3) in determining whether you have an impairment(s) that results in overall functional limitations that are the same as the disabling functional consequences of a listed impairment" (56 FR at 57946). We believe that this squarely addresses the comment and that there is no need to repeat the statement in § 416.926a, just as we do not repeat statements about symptoms from § 416.929 in the adult rules on equivalence.
In addition, and as we explained at the beginning of this preamble, we have reorganized the rules in §§ 416.924a through 416.924e of the prior rules, and revised several statements in §§ 416.924c and 416.924d of the prior rules (final §§ 416.924b, 416.924c and 416.924d) to make it clear that the same considerations and kinds of evidence apply to all assessments of functioning, irrespective of the step of the sequence at which we are doing the assessment. We believe that this reorganization will make it clear that the effects of symptoms can so limit a child's functioning that a finding of equivalence may be appropriate. (Ordinarily, this will be a functional equivalence, but there are circumstances, such as in the case of mental impairments, when the functional effects of symptoms can result in a finding of medical equivalence.) We also believe that the reorganization will not only address the comments by underscoring the need to consider a child's symptoms and the effects of medication on functioning when we consider functional equivalence, but that they go further than the commenters' suggestions by reminding our adjudicators to consider all other relevant factors as well. (See, e.g., final § 416.924c.)
Comment: Several commenters suggested that the rules should include language explicitly stating the requirement to evaluate the combined effects of all a child's impairments on overall functioning. They also asked that we state the policy that a child's impairment(s) need not be medically related to a listed impairment in order to use the listing for the purpose of functional equivalence comparisons.
Response: We have adopted the comments. In § 416.926a(b)(3), we have added a new second sentence which states that we will consider the combined effects of all of a child's impairments when we assess overall functioning. We have also added a clause at the end of the original second sentence (now the third sentence in these final rules) which states that the listing we choose for comparison need not be medically related to the child's impairment(s). Neither of these changes is substantive; they merely reflect our actual practice in adjudicating claims under the prior rules.
Comment: Two commenters recommended that we include the general cautionary language from the preamble to the prior rules (56 FR at 5544): "* * * the primary focus should be on the disabling consequences of an individual's conditions, as long as there is a direct, medically determinable cause for an individual's disability."
Response: We did not adopt the comment because the rules already contain nearly identical language. The last sentence of § 416.926a(b)(3) states: "When we make a determination or decision using this rule, the primary focus will be on the disabling consequences of your impairment(s), as long as there is a direct, medically determinable cause for these consequences."
Comment: One commenter, in an apparent reference to § 416.926a(c), "Responsibility for determining equivalence," stated that it would be inappropriate for a nonphysician, such as a psychologist, to make a decision of functional equivalence using any nonmental listing. The commenter provided as an example somatoform disorders that result in listing-level physical restrictions which are functionally equivalent to a musculoskeletal listing. The commenter suggested that, at a minimum, all claims based on the mental impairment listings that were reviewed by a psychologist and denied should be reviewed by a physician to ensure that functional equivalence had been considered.
Response: It has been our longstanding policy that psychologists in the State agencies are permitted to make determinations based on any mental disorders, including the various kinds of somatoform disorders. This policy also applies to determinations of functional equivalence. If necessary, a psychologist may consult with an appropriate physician specialist to assist in the determination whether a somatic listing is functionally equaled.
Comment: One commenter wanted to know who the "other designee of the Secretary" in § 416.926a(c) might be.
Response: The "other designee" refers to Federal medical and psychological consultants in those situations in which we, rather than a State agency, make the determination. This can happen in a number of circumstances, such as when our Federal Disability Determination Services adjudicates a case, in foreign claims, and in claims involving the Railroad Retirement Board. (See § 416.903, "Who makes disability and blindness determinations.")
Comment: Several commenters were concerned that the examples in § 416.926a(d) would become a kind of "listing," and that the principles of functional equivalence would be applied only in cases which presented facts that matched the examples. The commenters offered several specific suggestions for revising the text, ranging from additional language to underscore the fact that the examples were not an all-inclusive list to suggestions for adding explanations of the rationales behind the various examples in order to provide more insight into the principles the examples are intended to illustrate. One commenter recommended language we could use to explain several of the examples. Two commenters asked us to cite the listings that are equaled in the examples, stating that this, too, would help provide more insight into the process.
Response: We adopted the comments that asked us to state even more clearly that the examples are not all-inclusive. We revised the last sentence of § 416.926a(d) by dividing it into two sentences and adding language to the second of the newly created sentences. The latter sentence now provides that, "Findings of equivalence based on the disabling functional consequences of a child's impairments should not be limited to the examples below, because these examples do not describe all the possible effects of impairments that might establish equivalence to a listed impairment." We also added a final sentence to this paragraph to state the duration requirement.
We did not adopt the comment suggesting that we add rationales to some or all of the examples in order to provide more insight into their intent. We believe that such expository language is not appropriate in a regulatory context. However, we have used much of the language suggested by one of the commenters in our operating manuals.
We also did not adopt the comment that asked us to state the particular listings that are equaled in the various examples. In some cases, the examples do equate with specific listings. For instance, the second clause of final example 4, ("ambulation possible only with obligatory bilateral upper limb assistance") restates the disabling functional consequences of Listing 101.03B, and final example 5 describes two of the so-called paragraph B criteria of the childhood mental listings. Other examples, for instance, final example 3 ("frequent need for a life- sustaining device"), are not as specifically tied to single listings and could be found equivalent to more than one listing. We, therefore, believe that adding listings references could have the paradoxical effect of narrowing the use of the examples, an outcome this commenter and others cautioned us to avoid in the comment immediately preceding this one.
Comment: In a related comment, two commenters urged us to add a new example 16 in order to prevent the list of examples from being viewed as all-inclusive. They recommended language for the provision that would remind adjudicators to include "any other impairment or combination of impairments which equivalently limits function at a listing level equivalent of severity."
Response: We did not adopt the comment because such language is already included in the regulations. As the introductory paragraph of § 416.926a(d) explains, the subparagraphs are merely "some examples" of consequences of impairments that we might not have found medically equivalent under the rules we used prior to the decision in Zebley, but which are functionally equivalent under these rules. Moreover, in our opinion, the provision proposed by the commenters would not fit logically into the list of examples. The commenters' language is a general statement that in itself is all-inclusive and, therefore, is not an "example." However, as we explained in the previous response, we have revised § 416.926a(d) to state even more strongly that the determination of functional equivalence should not be limited to the examples in the subparagraphs because the examples do not describe all the possible effects of impairments that might establish equivalence under the new rules.
Comment: Several commenters noted that the source of some of the functional equivalence examples was the proposed "screen" which was discussed in the preamble to the prior rules (56 FR at 5536, 5550). The commenters observed that the suggested screen criteria were somewhat analogous to presumptive eligibility criteria, and were sometimes unwittingly stated in terms of severity that exceeded listing-level severity. Thus, these commenters thought that, because we had included these proposed screen criteria, the list of functional equivalence examples could set a "standard" or threshold" for functional equivalence that is higher than it ought to be.
The commenters offered several suggestions. One suggestion was that we include additional examples that were "closer to the threshold of what constitutes functional equivalence." Several commenters asked us to revise the examples that described limitations even greater than listing level so that they were not as severe. Other comments asked us to delete those examples.
Response: We did not adopt the comment asking us to add more examples. Generally, we try not to use examples in the regulations, although we may make an exception when—as here—there is a policy for which we think a few examples may be helpful during the initial implementation period. Furthermore, we are afraid that, were we to make the list longer, we would increase the risk of the examples being viewed as an all-inclusive "listing."
We adopted several, but not all, of the comments that asked us to delete or revise certain examples. We provide our responses to the specific comments about the examples in the following comments and responses.
Comment: Three commenters asked us to delete the word "daily" before "need for a life-sustaining device" in example 3.
Response: Although we believe that the provision cannot stand without some quantification, we changed the adjective "daily" to "frequent" in response to the comments. We believe that if we had deleted the adjective entirely, the example would have been too imprecise. The example includes "mechanical ventilation" as an indication of the kind of life-sustaining device we intend by this example. If we had deleted the word "daily" without replacement, the example could have been misconstrued to include any child who needed mechanical ventilation, even if only infrequently. An additional advantage to using the word "frequent" is that the example now describes conditions that may be episodic; i.e., subject to frequent exacerbations and remissions.
As we explained in the "Explanation of Final Rules" section of this preamble, we also deleted the statement, "lasting or expected to last," from this example. This is because the statement is a statutory requirement that applies to all of the examples and we did not want to give the impression that it only applied to those examples that mentioned it. We have moved the statement to the opening text of § 416.926a(d), before the beginning of the list of examples.
Comment: Other comments asked us to delete example 4 in the prior rules, because "complete inability to stand and walk" is more severe than example 5 in the prior rules, "marked inability to stand and walk," and, thus, is superfluous. One commenter suggested that we combine former examples 4 and 5 to read "inability to stand and walk." One commenter asked us to delete, "e.g., ambulation possible only with obligatory upper limb assistance," from former example 5 because the commenter thought that an example within an example would lead to less flexible interpretation and application of the example.
Response: We have deleted example 4 of the prior rules because we agree with the commenters that it merely describes the most severe limitation on the ability to stand and walk and is, therefore, subsumed under former example 5. Moreover, a child who is unable to stand and walk would be found to have an impairment that meets or medically equals one of our listings. For the same reasons, we did not adopt the comment that asked us to combine former examples 4 and 5 to state, "inability to stand and walk," which is only a less-redundant way of saying "complete inability." We did not adopt the comment that suggested we delete the example within former example 5 (now example 4 in these final rules). The example-within-the-example is adopted from Listing 101.03B and provides a more precise description of listing-level severity.
Comment: Other comments asked us to delete the word "complete" before "inability to perform self-care skills" in former example 6 and in former example 8 before "inability to function independently outside the area of one's home * * *"; the second comment suggested that as an alternative we replace "complete" with "marked" in example 8.
Response: Instead of deleting the word "complete" from former example 6, we have deleted the example entirely. As in the preceding comment and response, we agree with the commenters who pointed out that complete inability to perform self-care skills would not be useful as an example of functional equivalence. In addition, based on the general comments that asked us to delete language from the examples illustrating impairment severity that exceeded the severity of the medical listings, we have deleted former example 15, "gross microcephaly of greater than 3 standard deviations," which is generally associated with significant mental retardation. Most, if not all, children with such limitations would have impairments that are likely to meet or medically equal one of our listings.
We did not adopt the comment asking us to revise former example 8 (now example 6 in the final rules, "Any physical impairment(s) or combination of physical and mental impairments causing complete inability to function independently outside the area of one's home within age- appropriate norms") because its language is adopted from adult Listing 12.06C, except for the final phrase, "within age-appropriate norms." Our intent with this example was to show how a physical impairment(s), or a combination of physical or mental impairments, in a child could be found equivalent to the listings by reference to an adult listing. We believe that altering the language could obscure this point. In any case, for the sake of consistency and clarity, we would prefer not to introduce a separate rule that uses slightly different language than an existing, but obviously similar rule.
Comment: One commenter suggested that we delete the criterion for "prematurity" from former example 10 (now example 8), because a weight of less than 1200 grams at birth in a full-term infant has implications for the infant's growth and development that are at least as serious as those for premature infants. The commenter also pointed out that there was an inconsistency in our rules defining prematurity: Example 10 defined prematurity as "37 weeks or less," while § 416.924b(c) of the prior rules (final § 416.924a(c)) defined prematurity as "less than 37 weeks." By deleting the references to prematurity from the example, we could eliminate the inconsistency.
Response: We adopted the comment by deleting the word "premature" and the parenthetical statement, "i.e., 37 weeks or less," from final example 8. For the same reason, we deleted the word "premature" from final example 9 (former example 11), "Infants weighing at least 1200 but less than 2000 grams at birth and who are small for gestational age, until attainment of at least 1 year of age."
Comment: One commenter asked us to define "small for gestational age" in final example 9 (former example 11).
Response: We adopted the comment. We deleted the phrase, "at least 4 weeks," from the phrase "at least 4 weeks small for gestational age," in final example 9 and added the more precise statement that "small for gestational age" means a birth weight that is at or more than two standard deviations below the mean or below the third growth percentile.
Comment: Two commenters also suggested that the provision of example 14 of the prior rules (example 12 in the final rules) which "qualifies" children up to the age of 3 should be extended to former examples 10, 11, 12, and 13 (final examples 8, 9, 10, and 11). They said that many of the extremely serious conditions in the list of examples will require extensive medical intervention well beyond the first year of the child's life, and that SSA should therefore assure families that financial assistance and access to Medicaid would be available for at least 3 years. This extension of time would eliminate the inefficient and needless cost to SSA of evaluating these children at 1 year of age, only to find that they continue to be disabled.
Response: We did not adopt the comment. The various examples cited by the commenters have different purposes. Final examples 8, 9, and 10 (the two low birth weight examples and the example of physical impairment(s) that satisfy the requirements of Listing 112.12) are essentially examples for infants whose impairments cannot be precisely diagnosed.
Final example 11, for children who have major congenital organ dysfunction which could be expected to result in death in the first year of life without surgical correction, is more medical in its approach. It describes children with physical impairments who may eventually improve so that they are no longer disabled but who we can reasonably expect will be disabled until at least age 1 based on the nature of the impairment, the child's current functional status, the extent of the treatment and recovery required, and clinical judgment about the outcome of the treatment. However, the principles in the example could certainly apply to older children if the facts warranted.
Final example 12, "Tracheostomy or gastrostomy in a child who has not attained age 3," is more akin to final example 11 than to the other three examples. It is not an example that necessarily means a child will be found disabled until age 3. It merely says that, in such a small child, this kind of treatment, if it has lasted or is expected to last for 12 months, will have a serious enough impact on daily functioning and age-appropriate behavior as to constitute a disability.
Nonetheless, our use of age 1 in the other examples is not an automatic cutoff date at which we assume children are no longer disabled or at which we necessarily require a continuing disability review. Our intent from the outset was to employ sound, basic adjudicatory principles, which dictate that some judgment be made as to when to reexamine each individual child based on the facts presented. This is, in fact, the guidance we have given our adjudicators and the way we have actually implemented these rules. Our goal has only been to provide examples, not all-inclusive listings: If we were to change the age reference to 3 years, we could still be subject to the same criticism from those who pointed out that some children are difficult to test at ages 4 or 5.
Finally, we want to state clearly that, by statute and regulation, we do not automatically terminate the benefits of any disabled person, adult or child, at a given time. Once we have found a child disabled, we may only find the child no longer disabled if the standards for terminating an individual's benefits as set forth in the statute and regulations are met.
Comment: One commenter recommended that we add the language, "Dependence on life-sustaining medical equipment or intervention such as tracheostomy and gastrostomy," to former example 14 ("Tracheostomy in a child who has not attained age 3") in order to make it clear that there are other kinds of major medical intervention or support that are similarly intrusive and impairing.
Response: We partially adopted the comment. We added "gastrostomy" as another example of functional equivalence in children who have not attained age 3 in final example 12.
Comment: One commenter stated that "many of the remaining functional equivalence examples are taken directly from the 'B' criteria of the childhood mental disorder listings." The commenter felt that, although the examples were correct, "those listings already allow such determinations." The commenter said that it would better if we were to include examples involving physical impairments "and other 'harder' examples," targeted more toward physical impairments. Another commenter thought that none of the examples captured the situation of children with arthritis who may not have complete or even marked inability to stand or walk, but may be able to walk only short distances and stand for only short periods. This commenter also wondered why there were no examples of diseases with periods of remission.
Response: We have clarified the examples in response to the comments. We believe that the commenters misunderstood the purpose of the examples, which are almost exclusively for use in evaluating physical impairments or combinations of physical and mental impairments.
Only three of the functional equivalence examples were taken from the mental listings: Final example 5, which illustrates the use of the paragraph "B" criteria for physical, or combined physical and mental impairments; final example 6, which illustrates the use of an adult paragraph "C" criterion for physical, or combined physical and mental impairments; and final example 10, which illustrates the use of the mental listing for infants to evaluate infants with physical, or combined physical and mental impairments. By suggesting that "those listings already allow such determinations," the first commenter apparently misunderstood that these few examples refer to the use of mental criteria to evaluate physical impairments, or combinations of physical and mental impairments. We did not intend them to refer to mental disorders because mental disorders that satisfy the criteria of the mental listings already meet or medically equal the mental listings. The point of the examples was to illustrate how a physical impairment(s) could be found equivalent by reference to the broad functional criteria in the mental listings, in our view a concept that is especially useful for evaluating the effects of multiple impairments, chronic episodic impairments, and impairments involving diminished functioning because of symptoms.
However, since the commenter misunderstood the purpose of these examples, we believe that it would be helpful to clarify the purpose of the examples. Therefore, we have added the clause, "Any physical impairment(s) or combination of physical and mental impairments causing * * *," to the beginnings of final examples 5 and 6. In final example 10, we also added the phrase, "or combination of physical and mental impairments," for consistency with the other examples. For the same reason, we replaced the word "disorder" with the more precise "impairment(s)." We believe that with these clarifications it should be clear that these examples are targeted almost exclusively at physical impairments.
With regard to the second commenter's concerns, we want to assure the commenter that the examples do cover the situations described. There is no requirement that marked inability to stand and walk be the result of a continuous, mechanical musculoskeletal defect, since that would, in effect, describe medical equivalence and defeat the purpose of the functional equivalence policy. Children with rheumatoid arthritis who are able to walk only short distances and stand for only short periods because of pain, fatigue, or weakness do have marked inability to stand and walk. Indeed, one of the exercises we use in our training describes a child with a respiratory impairment that results in marked inability to stand and walk because of shortness of breath and fatigue; the impairment need not be one that has articular or other musculoskeletal manifestations, as long as the disabling functional outcome is the same. As to the concern about impairments (such as rheumatoid arthritis) that are subject to periods of remission and exacerbation, we believe that our reorganization of the rules makes clear that the "other factors" in final § 416.924c apply at every step of the sequence. This means that chronic, episodic impairments or impairments that require adaptations or structured settings must be considered in the same way at the listings step as at the other steps of the sequential evaluation process. As we have already stated, the revision to final example 3 and the examples of the functional criteria from the mental listings also include such impairments.
Comment: One commenter was concerned that children who are impaired to a lesser degree than complete dysfunction or who require something less than 24-hour monitoring "will be denied eligibility on equivalence grounds." The commenter said that many children with spina bifida occulta, for example, must contend with severe restrictions on their behavior, education, and development and yet often do not suffer impairments of the degree indicated by § 416.926a(d).
Response: We believe that we have made clear in the foregoing responses and revisions that children do not have to be completely dysfunctional or require 24-hour monitoring to have impairments that are functionally equivalent to the listings. We also believe that we have made clear in the response immediately preceding this one that children with sufficiently severe limitations in their ability to function—which could be in terms of behavior, development, and ability to learn or go to school—could be found to have impairments that are functionally equivalent to the listings, especially through the use of final example 5. Those whose functional limitations are less severe will not be "denied eligibility on equivalence grounds"; rather, their disability decisions will be based on an individualized functional assessment at the last step of the sequence.
Comment: Several commenters submitted identical language revisions that would provide for the "affirmative solicitation of medical evidence, including medical opinion, preferably from a treating source." Some commenters explained that they were submitting this language because they thought we did not provide for the solicitation of treating source evidence at all, or for solicitation of the kind of evidence regarding functioning that we would need to make a determination of functional equivalence. For instance, one commenter suggested that we add a provision "inviting applicants to submit evidence from doctors, occupational and physical therapists, and other health professionals to support their application." (Emphasis in original.) Another comment, which we received from two commenters, also said: "Unless SSA's own consultative examiners are asked about equivalence, and the specific factors that will go into such a decision, their reports will not be complete enough for adjudicators to make reasonable decisions. One must ask the right question to get the answer." Others saw the language they submitted to mean what the original drafters of the comment undoubtedly intended: that we should solicit opinions about functional equivalence from both treating sources and consultative examiners. Most of the commenters acknowledged that outside opinions about functional equivalence of an impairment should not be binding on us. However, they urged that we actively solicit these opinions as expert testimony from the people who were likely to know the child the best. One commenter cited a 1981 case from the 5th Circuit (Smith v. Schweiker, 646 F.2d 1075) and a 1985 case from the 11th Circuit (Broughton v. Heckler, 776 F.2d 960) as support for the notion that we should give "substantial" or "considerable" weight to the opinions of treating sources unless good cause exists to the contrary. Several commenters stated that SSA "in all other areas of assessment emphasizes the importance of soliciting evidence and views of treating professionals." (Emphasis in original.)
Response: We did not adopt the comments, which were beyond the scope of these rules. The comments address an issue related to our policies on medical source opinions in § 416.927, which we addressed subsequently in the "Standards for Consultative Examinations and Existing Medical Evidence" (56 FR 36932, August 1, 1991). In the preamble to those rules, we provided lengthy discussions and responses to comments about the role of medical source opinions regarding equivalence, residual functional capacity, and other issues that are reserved to the Secretary because they are dispositive of the ultimate determination of disability. We refer interested readers to those discussions at 56 FR at 36934 and 36950, and the regulation section at 56 FR at 36968. In the preamble, we also explained that we were guided in the development of the rules by the general principles articulated by the various courts of appeals. (See 56 FR at 36934 and 36950.)
In brief, we do not solicit opinions on issues such as whether an impairment(s) is equivalent to a listing because we do not consider treating sources or consultative examiners to be experts in these matters. However, we do solicit opinions about the "specific factors that will go into such a decision" (as two of the commenters said); i.e., the nature and severity of the claimant's impairments. The fact that we do not solicit opinions about equivalence, disability, and other dispositive issues, does not mean that we will disregard any opinions that treating sources submit to us. It is not true, as several commenters believed, that we "deprive the treating pediatrician of the opportunity to submit such evidence." The rules in § 416.927 provide that we must consider such opinions as part of the evidence.
Finally, we actively and routinely solicit medical evidence from treating and examining sources, including opinions about the nature and severity of the impairments. In fact, we ordinarily request the evidence for the claimant; the claimant need only give us permission to do so.
Section 416.994a How We Will Decide Whether Your Disability Continues or Ends, Disabled Children
Comment: One commenter asked whether the reference to equivalence to the listings in § 416.994a(b)(1) included functional equivalence.
Response: Yes. The reference in the paragraph to § 416.926, the rules on equivalence for adults, was a typographical error which we corrected in an error notice on April 1, 1991 (56 FR 13266). The reference should have been to the childhood rule, § 416.926a, which includes the policy of functional equivalence.
Comment: One commenter referred to the rule in § 416.994a(d)(1)(i). This section provides that we will find medical improvement related to the ability to work when the most recent favorable decision was based on a finding that the child had an impairment that met or equaled a current listing and the child no longer meets or equals that listing. The commenter said that in the past we had modified a similar rule for adults to permit adults to show that they could meet the revised adult mental listings published in 1985. The commenter recommended that there should be a similar modification of the language for children with regard to the new childhood mental disorder listings. The commenter also stated that the "patent absurdity" of our rules was demonstrated by the fact that some children who have medically improved, so that their impairments no longer meet the prior listings, will still be found disabled on the basis of the individualized functional assessment rules.
Response: We did not adopt the comment, because these rules already protect children in the manner suggested. First, the commenter was not correct about our modification of the adult rules. Except for the minor editorial revisions we made in connection with the prior publication of the childhood rules on February 11, 1991, we have not substantively modified the adult rules on continuing disability since their initial publication on December 6, 1985 (50 FR 50118). Second, we believe that the commenter misunderstood these rules. The first step in the medical improvement sequential evaluation process asks whether the child has an impairment that meets a current listing, or an impairment(s) that equals a current listing (§ 416.994a(b)(1)). Therefore, we make this determination before we consider whether there was medical improvement (§ 416.994a(b)(2)), and before we consider whether the impairment meets a prior listing, when we are considering whether there is medical improvement related to the ability to work (§ 416.994a(d)(1)). This policy is identical to the process in the adult rules in § 416.994.
We also disagree with the last comment. We believe that the fact that children will have an opportunity to show that they are still disabled, even though their impairments have improved so that they no longer meet or equal current or former listings, demonstrates the inherent fairness of these rules and our compliance with the Zebley decision and congressional intent.
Comment: The same commenter objected to the provision in § 416.994a(d)(2). This section addresses the situation in which we must decide whether there has been medical improvement "related to the ability to work" when the most recent favorable decision was based on an individualized functional assessment. The section provides that we will do a new individualized functional assessment based on the impairments that were present at the time of the most recent favorable decision, although we will consider functions appropriate to the child's current age. The commenter, who acknowledged that the rules for children were the same as the rules for adults, objected that there is no discussion in this section about looking at the whole child or considering impairments that have arisen since the last favorable decision and that are related to the old impairments.
Response: As the commenter noted, the rules in § 416.994a(d)(2) mirror the rules for adults in § 416.994(b)(2)(ii), as well as the rules for disabled beneficiaries under title II in § 404.1594(c)(2). The only difference in the rules for children is that they refer to an "individualized functional assessment" instead of a "residual functional capacity assessment," which only applies to adults.
The commenter's concerns are the same as those in comments we received when we first published the medical improvement regulation. In the preamble to those rules, we explained that the decision whether medical improvement is related to the person's ability to work is required by the statute but that it is not a decision that the person's disability has ended, only a decision about whether we have to go on and decide if the person is still disabled based on all of his or her current impairments (50 FR at 50122). At the time we responded to the comments, we believed the concerns were unfounded, and approximately 7 years of continuing disability reviews for adults under titles II and XVI have substantiated that belief.
A finding that any medical improvement is related to the ability to work is not a finding that the child's disability has ended. We state this unequivocally in § 416.994a(d): "A determination that there has been medical improvement related to your ability to work does not necessarily mean that we will find that your disability has ended. We must also show that you are not currently disabled using rules governing severity and the last step of the childhood sequential evaluation process for initial claims in §§ 416.924 through 416.924e." It is at this "currently disabled" step that we consider what the commenter referred to as the "whole child" by considering all the child's current impairments. Nevertheless, in response to the comment, we have reinforced this statement in final § 416.994a(d)(2) by revising the second sentence as follows: "However, the new individualized functional assessment will take into consideration any current medical findings or functional limitations related to the previously existing impairments, and will be based on those functions that are appropriate to your current age."
Comment: The same commenter stated that it is likely there will be some cases of children having both mental and physical impairments in which we did not document the mental impairment because an allowance could be determined based on the physical impairment alone. The commenter advised us to take careful note of this situation when it occurs and to instruct adjudicators to carefully scrutinize these children's files for the existence of a mental impairment at the time of the last favorable decision when we determine whether any medical improvement is related to the ability to work.
Response: As the commenter is apparently aware, we instruct our adjudicators to consider all impairments that were present at the time of the most recent favorable decision, not only those that went into the favorable determination, when we determine whether any medical improvement is related to the ability to work. We will continue to be very careful in this regard.
Comment: The same commenter said that the child's continuing disability review process is complicated by the role that age will play. The commenter asked how an adjudicator will factor in age-appropriate functions on top of a "fictitious" individualized functional assessment that does not take into account new impairments that did not exist at the time of the most recent favorable decision.
Response: For reasons already discussed, we do not agree with the characterization of the process for determining whether any medical improvement is related to the ability to work as "fictitious." We have been employing this process in adult continuing disability reviews for approximately 7 years; our experience in adult cases is a valid basis for our conclusion that the process will work for children.
The remainder of the comment was not clear, but we assume that the commenter was referring to the situation in which the child is in a later age category at the time of the continuing disability review. The commenter seems to have thought that there would be a problem evaluating a child's age-appropriate functioning with reference only to the impairments that existed at the time of the most recent favorable decision. We disagree. We believe that the process of doing a current individualized functional assessment based on the current status of those impairments that were present at the time of the most recent favorable determination will be no more difficult than the corresponding process in adult claims; indeed, we think that the process will be the same.
Comment: The same commenter asked what "eligible to receive special Supplemental Security Income cash benefits" means in the fourth sentence of § 416.994a(f)(1). The commenter wondered if it was a reference to the special provisions, in section 1619 of the Act which permit a person who continues to have a "disabling impairment" to work at the substantial gainful activity level and be eligible for special SSI cash benefits. The commenter also asked whether the phrase in the same sentence, "eligible to receive," meant something different from "receiving." The commenter then said that there was a "key problem" with the provision in that section 1619 of the Act is a protection for people who continue to have disabling impairments and who work at the substantial gainful activity level, but most children will not have earnings at that level. The commenter wondered whether children would, therefore, be somehow less protected for work incentives than those over age 18 and whether we would consider earnings which are below the substantial gainful activity level as evidence of ability to work.
Response: The phrase "eligible to receive special Supplemental Security Income cash benefits" does refer to the special provisions in section 1619(a) of the Act. This language does not mean something different than "receiving." The language and the limited exception it explains have not been changed by § 416.994a. Finally, we do not believe that children are less protected for work incentives than are individuals over age 18. We do not consider earnings below the substantial gainful activity level as evidence of ability to work and, thus, children, who generally earn less than the substantial gainful activity level, do not need the work incentives of section 1619 to protect their eligibility.
Comment: The same commenter was concerned about the vocational therapy exception in § 416.994a(f)(2). The commenter thought it "probable" that the majority of children will be receiving some vocational therapy. As a result of the aging process in children, the commenter thought it was not fair to apply this standard, because unlike the situation for adults, the nature of the services available to children in the school setting could result in many not benefiting from the medical improvement review standard.
Response: The vocational therapy exception is a statutory requirement in section 1614(a)(4)(B)(i)(I) of the Act (42 U.S.C. 1382c(a)(4)(B)(i)(I)) which applies both to adults and children. For that reason, we must include the provision in our regulations. In those childhood cases where the exception is found to apply, the rules in § 416.994a(f) state that we must still also show that the child's impairment(s) is now no longer of comparable severity to any impairment(s) that would disable an adult, taking all of the child's current impairments into account. Therefore, we believe that when the vocational therapy exception does apply, it will be a valid finding and not unfair.
Comment: Two commenters referred to the statutorily mandated exception to medical improvement for failure to follow prescribed treatment in § 416.994a(g)(4). Both commenters thought that it was unreasonable to hold children to the adult standard and to penalize them for failure to follow prescribed treatment. One commenter said that we should delete the paragraph; alternatively, we should add language to it from two cases that were decided by the Court of Appeals for the Eighth Circuit. The other commenter said that we should modify the section to provide standards for children.
Response: We did not adopt the comments. We could not delete the paragraph because it reflects a statutory requirement in section 1614(a)(4) of the Act (42 U.S.C. 1382c(a)(4)). We also believe that the changes suggested by the commenters involve issues that are beyond the scope of these rules. The changes would also require changes to other regulations addressing the failure to cooperate. We are considering issuance of an NPRM that will address the broader issues. As we draft the NPRM, we will consider including the language suggested by the first commenter as well as all of the other suggestions we received.
Comment: Two commenters said that the rules did not say what we do in the continuing disability review process when a child who is receiving SSI payments based on disability turns age 18; i.e., how we make the transition from child to adult in continuing disability reviews.
Response: There is no separate section in the rules to address this issue because the policy is inherent in the existing rules; it stems from the statutory requirement that we generally may not find that disability has ended unless there has been medical improvement related to the ability to work. Therefore, if the most recent favorable decision was based on a childhood listing, we use the childhood listing for comparison, even though the person is now an adult. If the most recent favorable decision was based on an individualized functional assessment which considered the domains of development and functioning, we prepare a current individualized functional assessment as though the person were just under age 18. This assessment is then compared with the prior assessment. If the basis for the prior allowance was an individualized functional assessment that considered work-related activities, we prepare a residual functional capacity assessment for the comparison.
Comment: A commenter asked whether we plan to do special screenings of childhood cases where the exceptions are applied, as we did for adults when we first implemented the medical improvement rules in 1985.
Response: We do not have any plans to do this. We instituted the "special screenings" when we first promulgated the rules in 1985 because they contained many new concepts, including the exceptions, and we wanted to be sure that the new, complex rules were correctly understood. The special screenings were not confined to adult cases, but included title XVI childhood disability cases. As adjudicators became familiar with the medical improvement concepts, we gradually eliminated categories of cases subject to review until we stopped the review entirely; we have not reviewed any cases under this special screening for several years. Since the purpose of the review was to gauge adjudicator understanding of then-new medical improvement concepts and the concepts are now well understood, we do not believe we need a new special screening of childhood disability reviews which utilize essentially the same principles we use under the adult rules.
Request for Additional Public Comment Time
Comment: Several commenters urged us to extend the comment period to more than 60 days. The commenters said that a longer comment period would give us, as well as advocates and the families of disabled children, more time to gain a clear understanding of how the new regulations would work and any problems associated with their application and implementation. One of the commenters also urged us to keep an open mind on the new rules as adjudicative experience is generated during the first two years of their implementation, and to be willing to make needed changes in the rules in response to public feedback.
Response: We adopted the comments, although not to the extent that some commenters had asked. A 60-day comment period is our standard period of time for allowing comments on administrative rules, even when they are proposed rules that have never been tried before and will not be used until after the public has had an opportunity to comment. However, because of the number of requests we received, and because we agreed with the commenters about the unusual significance of these rules, we extended the closing date from April 12, 1991, the date we originally announced in the FEDERAL REGISTER (56 FR 5534), to July 8, 1991 (56 FR 21075, May 7, 1991). Although some commenters recommended longer extensions—some, up to one year—we believe that 147 days, or nearly 5 months, was sufficient; with the extension, the length of the comment period was also consistent with a recommendation we received from the late Senator John Heinz of the Senate Special Committee on Aging, who recommended a 150-day comment period.
With regard to the second comment, we have been carefully monitoring these rules during the more than one- and-one-half years since their implementation. We believe that the reorganization and revisions in these final rules demonstrate that we have kept an open mind about any changes that we deem necessary based on our own experience and public feedback. We will also continue to keep an open mind in the future, as we always do.
Comment: One commenter suggested that we consider reconvening the individual childhood disability experts who helped us in the early stages of the regulation process before finalizing these rules.
Response: We do not believe that it is necessary to consult with the experts again. We do not believe there are any issues in these rules or in the comments that would be the proper focus of the experts. Moreover, shortly after publication of the prior rules on February 11, 1991, we sent copies of the rules published in the FEDERAL REGISTER to each of the experts, providing them an opportunity to submit comments. We received comments from one of the experts, which we have incorporated into these final rules.
Commitment To Update Regulations in Future
Comment: One commenter observed that, given the dynamic nature of medicine, with rapidly expanding technology, it is reasonable to anticipate advances in the screening and diagnosis of, and early intervention for, children with impairments. For this reason, the commenter recommended that we provide a sunset date of 3 years for the new rules.
Response: We do not believe that it is necessary to provide a sunset date, as we do for our medical listings. The medical listings in the Listing of Impairments contain specific medical criteria; as such, they do require updating from time to time.
These childhood rules are not analogous to the Listing of Impairments. They are grounded on a requirement for an individualized assessment of each child's ability to function, an assessment that we believe will always be relevant regardless of any future advances in screening, diagnosis, and early intervention. Thus, the fact that there may be such changes should have little or no impact on these rules because our ultimate concern will still be to determine how a given child is able to function and how that ability comports with our definition of disability. The kinds of advances described by the commenter will surely assist us in making this determination (in an evidentiary way and perhaps by providing greater insight into the effects of children's impairments), but we do not think that they will affect the rules themselves. As with all other regulations, we will make changes to the rules in the future should such changes become necessary.
Presumption Of Disability
Comment: We received two comments recommending that we include a separate provision in these rules providing a "presumption" of eligibility for SSI payments for some young children with genetic, congenital, or acquired impairments. (Despite the use of the word "presumption," it was apparent that neither comment was about the special temporary SSI benefit we may pay for a period up to 6 months while we are adjudicating a claim, called "presumptive disability payments.")
One commenter, who may have thought that the rules we published on February 11, 1991, were an NPRM, and who may have been unaware of the interim standard we had been following since the Zebley decision, stated that the current rules required children to have impairments that met or equaled the listings. Because of this, and because very young children are difficult to test, the commenter suggested that we provide a separate rule allowing a rebuttable presumption of disability for children under 2 years of age who are born with impairments such as infant drug dependency, AIDS, Infantile Pseudoleukemia, and Tay-Sachs disease; and to children from 2 to 6 years of age with cerebral palsy, severe orthopedic impairments that affect gait, deafness or blindness, Hodgkin's disease, Tourette syndrome, or multiple sclerosis. The other comment suggested a provision for presuming disability in children under age 4 with certain genetic or congenital impairments that would unquestionably result in eligibility when the children are old enough to be properly tested.
Response: We did not adopt the comments. Notwithstanding the functional equivalence examples in § 416.926a(d), the primary focus of these rules is not on specific impairments that may be disabling, but on establishing general rules for determining disability regardless of the impairment or combination of impairments. Thus, the comments address a subject that is beyond the scope of this particular set of rules.
However, we recognize the commenters' recommendations as being adopted from several pieces of legislation that were proposed in the Senate and House of Representatives during approximately the 3 years preceding the publication of these rules. (For example, see H.R. 868, "SSI Disabled and Blind Children Act of 1989," February 6, 1989; S. 1718, "SSI Disabled Children's Eligibility Act of 1989," October 3, 1989; and S. 2290, "Disabled Children's and Widow's Eligibility Reform Act of 1990," March 3, 1990.) Even though the proposed bills were not enacted into law, we have been addressing in our regulations the underlying concerns of these comments. For instance, on December 12, 1990, we published a new Listing 110.06 in the FEDERAL REGISTER (55 FR 51204) which provides that all children with non- mosaic Down syndrome established by clinical and laboratory findings meet the requirements of the Listing of Impairments. We also published separate Listing 110.07 for evaluating FAS and other infant drug dependencies, severe chronic neonatal infections, and other serious hereditary, congenital, or acquired disorders that usually affect multiple body systems. On the same date, we also published Listing 112.07, which includes Tourette syndrome. (See 55 FR at 51225 and 51234.) Some of the impairments named by the first commenter, such as Tay-Sachs disease (Listing 110.08B), have been in our listings for many years. Moreover, the various provisions of these rules that are aimed at the evaluation of infants and young children are also intended to address, in a more sweeping and inclusive way than any finite list of impairments ever could, Congressional concerns about the difficulty of determining disability in small children. We do not believe that we could have gone any further in these rules without a legislative change.
Finally, we want to make absolutely clear that we have not employed a listings-only test for evaluating childhood disability since the Supreme Court's decision on February 20, 1990, nearly a year before we published the prior version of these final rules on February 11, 1991. The "current" rules at the time of the comment were in fact the prior version of these rules and, of course, went far beyond a listings-only test.
Disability Determinations by Other Agencies
Comment: Two commenters recommended that we make more use of the disability determinations made by other agencies than is indicated in the current rules. One commenter understood the preamble to say that we had "dismissed" the Developmental Disabilities Act (DDA) definition because it was less broad and less liberal than the Social Security criteria. If this is accurate, the commenter maintained, then a child determined to be disabled under the DDA should be eligible for SSI (assuming that the income and resources requirements are met). Similarly, the commenter thought that we "dismiss" the use of determinations made under Part B of the Education of All Handicapped Children Act (now the IDEA) because that part is an entitlement provision without a means test. Another commenter said that the preamble language "cavalierly dismissing the professional evaluations of the Developmental Disabilities Act and the Education of the Handicapped Act are [sic] singularly unpersuasive."
Both commenters pointed out that the information gathered in connection with determinations under these other laws would have relevance to our determinations; one commenter suggested that we could markedly decrease our administrative costs if we were to use this evidence, and encouraged us to actively collaborate with other programs. One of the commenters said that, although we should not be bound by the determinations of other agencies, we should afford considerable weight to their determinations.
Response: Although we agree with the comment about the desirability of obtaining and considering evidence from other agencies, we do not agree that any changes are necessary in these rules. The comment about whether we should consider decisions of other agencies and the weight we should give such decisions has been obviated by other rules we published subsequent to the close of the comment period for these rules.
The comments addressed a rather lengthy discussion in the preamble to the prior regulations (56 FR at 5539), which we had provided only for informational purposes. The purpose of the discussion was to alert the public to the fact that we were aware of other Federal childhood disability laws (specifically, the DDA and parts B and H of the IDEA), and to explain: (1) that under our regulations we are not bound by disability decisions made under those laws, and (2) why we were unable to adopt their definitions as our standard of childhood disability. We did not intend to give the impression that we would "dismiss" such determinations; as we have stated repeatedly throughout these rules and others we have published during the past several years, we do not "dismiss" or ignore any evidence that is relevant to our determination, including disability determinations made by other agencies.
The point is now moot because we have codified our policy in final rules published on August 1, 1991 (56 FR 36932, "Standards for Consultative Examinations and Existing Medical Evidence"). We now include in § 416.912(b)(5) of this part (as well as § 404.1512(b)(5) of part 404) a rule which states that for our purposes "evidence" includes "decisions by any governmental or nongovernmental agency about whether you are disabled or blind." (See 56 FR at 36955 and 36963.) We believe that this addition to the rules responds to the commenter who thought we would not consider such determinations. As in any situation in which we are required to "weigh" evidence, the weight to which such determinations will be entitled will necessarily depend on the individual facts of each case. However, we must reiterate that we have retained our longstanding rule in § 416.904 (and § 404.1504) that decisions made by other agencies are not binding on us.
In the preamble to the prior childhood disability rules, we also stated that we recognized that the kind of descriptive information obtained in connection with disability evaluations under the other laws was "vital to making decisions about the presence or absence of disability according to SSA's definition of disability." (56 FR at 5539.) Our intent in this passage was to provide reassurance that we would use evidence gathered in connection with other disability determinations. We made this statement because we held the same position as the commenters, that much of the evidence gathered by other agencies for their determinations would be relevant to our determinations and that it was administratively expedient to try to obtain evidence from these sources. We believe, however, that the recent revisions to § 416.912 mentioned above adequately capture the various kinds of evidence that could be present in another agency's records (including the agency's own decision), and that further revision to our rules is unnecessary at this time.
Impact of the Childhood Regulations on School Systems
Comment: Two commenters, who identified themselves as a school psychologist and a teacher of learning disabled children, expressed the belief that some parents have begun to want the schools to label their children "handicapped" so that they can receive SSI benefits. They reported that they had already been involved in two such cases in which the parents were upset when the commenters refused to provide labels of "learning disabled" to their children, resulting in a poor relationship between the school and the home. In addition, the commenters were concerned about the expense to their school that the number of requests for evidence would cause.
Response: As we have already stated in this preamble, we are required to follow the statute and our regulations. Because school evidence is one important source of information about children's functioning, we will continue to seek such evidence when it is relevant to our determinations.
We also state clearly in our rules that, even though we will consider determinations by other governmental or nongovernmental agencies, such determinations (such as that a child is "handicapped") are not binding on us. We nevertheless understand the commenters' concern: This is why our notices clearly state that the determination was made by an agency of the State and was not made by the claimant's doctor or by other people or agencies who gave us evidence. We also share the commenters' concern about the impact our requests for school evidence may have on the school systems. For this reason, we have been working at both the local and national levels to clarify the types of information we will need. In response to the comment (and one other, already described in an earlier comment and response), we have also clarified the rules in § 416.924c(g)(1) to state that we will consider school evidence only when it is relevant and available to us.
Comment: One commenter, who identified himself as a superintendent of schools, was concerned that the Federal government, in reaching beyond the Federal children's program criteria to identify students who might qualify for benefits, may be creating a barrier to the educational process that has traditionally taken place in the schools. The commenter stated that a "student's perception of himself and his ability to learn is called into question when he is labelled as handicapped." The commenter thought that the student's "incentive to achieve is weakened by the knowledge that a monthly check is based on the failure to achieve." In addition, the commenter was concerned that if we provide assistance to students who exhibit violent and disruptive behavior, the perception will exist (for students and faculty alike) that financial gain is the reward for non- conformance.
Response: These rules implement the law and are consistent with the Supreme Court's decision in Zebley. In any event, we do not agree with the commenter that they present a barrier to the educational process. First, in many cases a parent or other caregiver files the claim and the child may not be aware that a claim has been filed or that monthly benefits are being paid. Second, children who have impairments that limit their ability to function in an age- appropriate manner to the extent required by these regulations may already know they are different from other children. Third, many of the school-age children for whom claims are filed have already been labelled as handicapped by the school system. Fourth, we have a more sanguine view of the motivation of students with impairments, and believe that these benefits will not be an incentive to underachieve but rather function as support toward becoming a productive member of society. Last, these rules allow payment of benefits to children who exhibit violent and disruptive behavior only as the result of medically determinable impairments which cause them to behave that way, not as a reward for nonconformity.
Comment: The first two commenters expressed concern that we recognize "learning disabilities" as medically determinable impairments that could result in, or contribute to, a finding of disability. According to the commenters' interpretation of the definition of learning disabilities in the IDEA, children with learning disabilities should have been excluded from the proposed
SSI childhood regulations. The commenters noted that the definition of learning disabilities in the IDEA excludes from the term "learning disability" any learning impairment that is attributable to environmental, cultural, or economic disadvantage. The commenters seemed to reason, therefore, that a poor child with a learning problem could not also be labelled "learning disabled" under the definition in the IDEA.
Response: We disagree. It is well understood that learning disabilities can, and do, coexist with other medical conditions and in different environments. We have reviewed many claims in which both we and the child's school system determined the child's learning problems could not be attributed to the fact that the child was poor or had one of the impairments named in the IDEA, and that the child did have a "specific learning disability." Moreover, a learning disability can be a "medically determinable impairment," and we have no authority to exclude it from our consideration of children's claims.
Comment: The same two commenters thought that the rules required a child to be unable to perform the normal activities of childhood—such as dressing and feeding oneself, playing, and going to school. This would mean, according to the commenters, that only children who were not in school would qualify for benefits. The only exception would be children with severe (profound) mental retardation; they attend school but are unable to do the other normal childhood activities. The commenters said that SSI payments should be made available only to children who have multiple handicaps, i.e., those with profound mental retardation and physical handicaps; an exception would include those children who have been identified as having severe (profound) mental retardation or other health-impaired conditions under the IDEA. The commenters stated that the rules "need to have many more restrictions" or they would be too expensive.
Response: The regulations require that a child's impairment(s) must substantially reduce his or her ability to perform the normal activities of childhood, not make the child completely unable to do these activities. Additionally, § 416.924c(g)(2) in these final rules (§ 416.924d(g)(2) in the prior rules) specifically states that the fact that a child is able to attend school will not, in itself, be an indication that he or she is not disabled.
There is no statutory requirement that a child have multiple impairments to be found disabled. To introduce this requirement in our regulations would be contrary to the statute. Moreover, we do not believe that these rules are too expensive. Rather, they are the best way to fully comply with the Supreme Court's decision in Zebley and to implement the Act.
Comment: We received several comments urging us to require in regulations that the State agencies use multidisciplinary teams to evaluate the evidence of children's functioning and make disability determinations. Chief among the reasons offered were that multidisciplinary assessments are common in pediatrics and professional practice in the child development and early education fields, that such assessments are often necessary to establish a diagnosis, and that the disability advocates and childhood disability experts had emphasized the importance of the role of multidisciplinary assessment during early discussions about the childhood rules.
Response: We do not agree with those commenters who thought that multidisciplinary review at the State agencies is an absolute necessity. We believe that it is far more important to require—as we did—the gathering of appropriate evidence. Once an appropriate record is established, the State agency teams are capable of doing individualized functional assessments and making childhood disability determinations, just as they are capable of assessing residual functional capacity and deciding whether an adult can do "other work" without multidisciplinary review. As we have emphasized throughout these rules, the issues of diagnosis and treatment are, in a sense, secondary; we need only know that a child has a severe medically determinable impairment that does not meet or equal the requirements of the listings, in order to cross the threshold to an individualized functional assessment. We need not necessarily know exactly what the impairment is. Our determination does not involve judgments about how to treat a child's impairments; our concern is with the severity and impact on functioning of a child's impairments as shown by the evidence.
In addition, since well before the Zebley decision, we had begun ensuring that the State agencies include pediatricians and other appropriate specialists on their staffs, so that all State agencies now have such individuals on the teams deciding childhood claims. We are confident that these specialists have the expertise to properly evaluate childhood impairments.
Comment: Several of the same commenters also referred to the need to obtain multidisciplinary "consultations." A concerned parent of a child with very severe impairments also seemed to support the need to obtain multidisciplinary evidence. She explained that her son had multiple problems but that he was not diagnosed until well after age 1 and after he had been evaluated through the use of neurological testing, orthopedic evaluation, and psychological testing. She was sure that this was the case for many children.
Response: We agree with the commenters that it will often be necessary to obtain evidence from multiple kinds of sources.
These include not only multiple medical sources, as described by the parent commenter, but other sources as well. This is why we have stressed the need to obtain all relevant existing evidence from the appropriate sources, which may include schools and other disability programs. We have also always permitted—and, at times, required—the purchase of consultative examinations from sources other than "acceptable medical sources," such as audiologists and speech and language therapists. However, we believe that the rules already address this issue adequately.
Comment: In a related comment, one commenter wanted to know what mechanisms we would put into place to ensure that the multidisciplinary assessments from various service providers are well-coordinated, so as not to delay processing of applications.
Response: We have always had procedures governing the development of evidence to provide guidance on the kinds of evidence to obtain and to mandate procedures for requesting evidence and ensuring that it is obtained as quickly as possible. With the publication of the "Standards for Consultative Examinations and Existing Medical Evidence" in the FEDERAL REGISTER on August 1, 1991 (56 FR 36932), and its accompanying manual instructions, we now provide detailed rules about whom to contact, when they should be contacted, and schedules for following up on evidence that is not immediately forthcoming. (If by "service providers" the commenter meant those who perform consultative examinations for us, the rules pertain to this kind of evidence as well.) In conjunction with the publication of the childhood rules, we developed a special questionnaire which is completed in every childhood disability claim to record the names of nonmedical sources of a child's functioning, such as caregivers, schools, counselors, therapists, and social services caseworkers. We believe these procedures will result in a well-coordinated processing of claims.
Comment: Two commenters said that the multidisciplinary principle or approach to childhood disability evaluation was "central" to the Supreme Court's decision in Zebley. Two commenters thought that the regulation stated that a multidisciplinary assessment of a child's functioning shall take place, but that it did not describe in any detail what the assessment will consist of nor what is meant by "multidisciplinary." These commenters thought it very important to define and describe in detail "the multidisciplinary functional assessment that is proposed for step four in the determination process."
Response: There is no language in the Zebley decision which states or implies that a "multidisciplinary" approach to evaluating children's claims is required under the statute. As we have stated elsewhere, the Supreme Court did not provide any instruction on how we were to draft these rules, save that we were to provide individualized functional assessments for children comparable to the type of assessment we provide for adults. Nevertheless, as we have said, we agree that multidisciplinary evidence is valuable, and sometimes necessary, whether the Supreme Court addressed the issue or not.
With regard to the two comments that we should describe in detail the multidisciplinary approach at step four, we assume that the commenters were referring to the provisions which appears in final § 416.924c(f) (§ 416.924d(f) of the prior rules), the only section in the rules in which we use the word "multidisciplinary." The purpose of this provision was to give another example of our policy that we look not only at the individual components of a child's life but also at the child's life as a whole. Thus, the section describes children who may require more than one kind of therapy, each in itself posing a relatively small burden on the child, but cumulatively involving a substantial amount of the child's time. It does not describe a multidisciplinary approach to evaluation at step four, but how the need for multidisciplinary therapy might contribute to a finding of disability. As we have already explained, we have also retitled and renumbered the entire regulations section (from "Other factors we will consider in the individualized functional assessment," § 416.924d, to "Other factors we will consider," § 416.924c) to make clear that this policy applies at every step of the sequence at which we assess functioning.
Payment of Childhood Disability Benefits
Comment: One commenter questioned whether it was appropriate to pay cash benefits to disabled children, as provided under title XVI, noting that the principal needs of disabled children are access to medical treatment and other interventions, and medical insurance to cover the cost of such treatment. The commenter said that we should at least give some consideration to establishing a monitoring system to ensure that benefits awarded to children are correctly utilized for the care and support of the child.
Response: We pay benefits to children pursuant to the law. Our regulations implement the law and explain in a practical way how we will abide by it. To address the appropriateness of paying cash benefits to disabled children is beyond the purview of these or any other regulations. However, it should be noted that in many States eligibility for SSI results in eligibility for Medicaid. The second part of the comment refers to our rules regarding representative payees and is also beyond the purview of these rules; we have referred the comment to the appropriate section of SSA for consideration.