HALLEX II-4-1-5

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:

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).

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.

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:

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.

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.

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.

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).

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.

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).

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.

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.

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.

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.

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.

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.

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.

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).

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.

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.

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:

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.

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.

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.

B. Comments

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 wo

II-4-1-5. Supplemental Security Income; Determining Disability for a Child Under Age 18 (Final Rules; 58 FR 47532), September 9, 1993

B. Comments