Statement by Kenneth S. Apfel,
Commissioner of Social Security
before the Senate Finance Committee
Subcommittee on Social Securitand Family Policy

July 7, 1998

Mr. Chairman and Members of the Subcommittee:

I am pleased to be here today to address this most important topic. Over the past quarter century, the Supplemental Security Income (SSI) program has helped families of children with disabilities meet their special needs. The SSI program has come to represent an important safety net to some of our mostvulnerable families. That is why during my confirmation hearing before the full Committee, I made a commitment to conduct a"top-tn-bottom" review of the implementation of the changes tothe SSI childhood disabil ity program brought about by the Personal Responsibiliry and Work Opportunity Reconciliation Actof 1996, more commonly known as the welfare reform law.

The Top-to-Bottom Review

I believed that this review was needed because of public concern with the implementation of the new law. I believed that the Congress, the President and the American people deserved to know whether the law and the regulations were being applied fairly.

Where specific problems were identified, I ordered that the Agency undertake immediate, corrective actions. And, because of my concern for the welfare of children, a concern I know is shared by you, the President, and the American people, the Social Security Administration (SSA) is taking steps above and beyond normal actions to ensure that every child receives a thorough and accurate assessment of his or her eligibility for benefits.

The review, which was completed in December 1997, showed that overall SSA and the SSA-funded State Disability Determination Services (DDSs), which make disability determinations for the Agency, have done a good job. Of the approximately one million children receiving SSI benefits as of December 1996 based on disability, about 288,000 were subject to redetermination under the new law, and most of these were handled properly.

After screening out the cases that were inaccurately coded as needing a review, there were about 264,000 cases requiring a review. As of May 30, 1998, we had made initial redetermination determinations for 245,349 children. We have continued benefits to 147,933 children, or 54.1 percent of all the decisions we have made. However. the review also found some inconsistencies in the application of the rules and in compliance with SSA instructions. The review identified three speci fic areas of concern: processing of children's cases classified in SSA' s records as having mental retardation; the quality of some aspects of case processing; and the adequacy of the information SSA was providing beneficiaries on their rights to appeal a cessation determination and to request that benefits be continued through the Administrative Law Judge hearing level.

As a result of the review's findings, I directed the State DDSs to review the cases of approximately 36,000 children whose benefits were ceased. Where our quality assurance information has identified problems with the accuracy of our decisions to continue benefits, we will give childhood disability cases priority review. In addition, on February 18, 1998, we re-notified approximately 75,000 children whose representative payees may not have understood their rights to appeal the determination to terminate their benefits or to request benefit continuation.

In March, we completed training for virtually all of our 15,000 adjudicators, including administrative law judges, on childhood issues that were problematic in adjudicating these claims, such as mental retardation and evaluation of maladaptive behaviors, in preparation for conducting the re-reviews, Although we originally expected to have the initial re-reviews completed by the end of this fiscal year, we are finding that more time may be needed in some cases to complete development of the medical evidence and to ensure that each child receives a fair and accurate new determination.

On March 30th, we published a new Social Security Ruling clarifying how to determine medical equivalence in childhood disability cases involving both cognition and speech disorders. Our adjudicators have been trained on this Ruling. In developing all of the training, and the Ruling, we had many discussions with individual medical experts and childhood advocates and took into account their comments. Moreover, we have conducted additional training, specifically geared to types of issues relevant to a particular State's needs . I am confident that as a result of these training efforts, our determinations will be even more accurate and consistent.

We have also developed unprecedented safeguards to ensure that our adjudication is consistent and our policy is nationally understood. This includes an enhanced and comprehensive quality review plan. These efforts will ensure early understanding by all components of the right way to do cases, provide timely and consistent feedback on deficient cases, initiate timely central policy guidance and clarification, and ensure national dissemination of all policy clarifications. In addition. I have directed that SSA conduct a study comparing the group of children losing SSI benefits to a group of children retaining SSI after implementation of welfare reform. This study will consist of two parts. The first part is an examination of existing data held by SSA, the Census Bureau and HHS. The second part is the development of a limited number of case studies to supplement the statistica l information. These case studies-valong with the statistical information--will improve our knowledge of the effects of welfare reform on children with disabi lities and their families. The results will be available by the end of FY 1999 and will help the design of our second research project on childhood disability.

A second research project on childhood disability will be a nationally representative survey of 2,000 families of children with disabilities, which will provide a more comprehensive evaluation of the impact of removing certain children with disabilities from SSI under welfare reform. A round of follow-up interviews wi ll be conducted after one year to provide longitudinal data about a range of outcomes similar to the first study, such as use of medical care, quality of life, parental labor force participation, and cost of care. This type of data has not previously been available.

SSA is also going to conduct a clinical study directed at evaluating thc most effective approach for assess ing functi oning in some children. This study will begin in FY 1999 and continue thro ugh FY 200I.

At this point, I'd like to tell you about specific findings in the three areas covered by
the review.

Mental Retardation

Of the approximately one million children on the rolls in December 1996, about 407,000 almost 41 percent of all children on the rolls) were coded in SSA's computer system as havin g a primary diagnosis of mental retardation. Eighty percent of these children (over 325,000 children) had impairments that had already been found to meet SSA's listings for mental retardation and were not subject to redetermination under the new law. Therefore. SSA conducted redeterminations on only 20 percent of the children (almost 80,000 children) who were coded on SSA's data sys tems as having mental retardation.

To begin, I'd like to draw a distinction between low IQ scores and mental retardation. Mental retardation is characterized by significantly subaverage general intellectual functioning accompanied by significant limitations in adaptive functioning. Children with low IQ scores who do not have limitations in adaptive functioning do not have mental retardation, although they may have another disabling impairment. In other words, we look at each child's ability to function as a whole we do not base our determinations solely on IQ scores.

During the redetermination process, concerns were raised that benefits to children with IQ scores in the range of 60 to 70 were being ceased erroneously because of misapplication of the listings, and that benefits to children with mental retardation who have IQ scores above 70 were being ceased because of adjudicator failure to consider the range of error inherent in all test scores and to consider all of the evidence.

SSA found that in a large number of the cases with the computer code for mental retardation, the children did not actually have mental retardation, and were never thought to have mental retardation, but were only shown in SSA's data with this diagnosis code because of limitations in our coding capacities and, frankly, coding errors. In most cases, these children were found to have learning disabilities or borderline intellectual functioning, and these claims were more likely to be ceased than claims of children who had mental retardation. This occurred because codes do not exist for all possible impairments, In such cases, our adjudicators are instructed to choose a code for a closely analogous impairment. As a result, DDSs have used the mental retardation code for other impairments.

In 1994, SSA established additional codes for certain impairments, including learning disabil ities, which were often coded as mental retardation. In connection with the top-to-bottom review, another new code was established in October 1997, for borderline intellectual functioning, another impairment that was often coded as mental retardation.

However, SSA's quality assurance data showed that some decisions to cease benefits to children SSA correctly coded as having mental retardation were deficient in some way. This means that some children appropriately identified as having mental retardation may have had their eligibility ceased incorrectly. Similar problems exist for children with mental retardation whose applications for benefits were denied after the enactment of the welfare reform legislation on August 22, 1996. As a result of these findings I have directed that SSA, through the DDSs, review the cases of all children, whose benefits were ceased or denied after the passage of welfare reform, that SSA coded as having mental retardation. These reviews began at the end of March.

Quality of Case Processing

SSA defines an accurate case as one that is free of both documentation and decisional errors. Therefore, a case may be found to be inaccurate because the adjudicator did not fully document his or her decision. Full documentation does not necessarily mean that the determination would change.

Our quality assurance process found that in most States the accuracy of both continuance and cessation determinations was above the rate of accuracy that SSA requires. However, quality assurance data also showed lower than average cessation accuracy for certain categ ories of cases in many States.

Based on this finding I directed that all States will also review a portion of their redetermination workloads that did not have the code for mental retardation. SSA has identified the types of case s that each State will review. The reviews will be of cessations in those categories of cases which. based on the data from our quality assurance review, have the highest likelihood of error. Where continuance accuracy was found to be below the threshold, we have given childhood disability cases first priority for reviews. Plans are being made to review these continuance cases in FY 1999.

The report also identified problems in cases where eligibility had been ceased based on a failure to cooperate. A child's eligibility for SSI may be ceased on the basis of a failure to cooperate when the child's parent or legal guardian does not respond to notices initiating the disability redetermination, does not take the child to a consultative medical examination, or otherwise does not cooperate in processing the claim without good cause.

Before eligibility is ceased, however, SSA's policy is to make repeated attempts to contact the childs parent or legal guardian by mail and by telephone, and when necessary to make special efforts to identify and contact another adult or agency responsible for the childs care. SSA sampled cases in States with the highest rates of cessation for failure to cooperate. SSA found that in a large number of the cases either all of the contacts required had not been attempted or the contact efforts were not documented in the case file.

Therefore, I have directed that SSA review the cases of all children whose benefits were ceased based on failure to cooperate in which a request for reconsideration was not filed. Most of these reviews have already been completed. These reviews will ensure that all required contacts and follow-ups are made and documented in case files.

Adequacy of Information

When SSA sends notices telling families (or other payees) that a redetermination has found a child is no longer eligible for benefits. the notice also advises them of their legal rights. They are told how to ask for a reconsideration, and that they can request continuation of their bene fit payments during this appeal proeess. They are also told, as required by law, about how to obtain information concerning attorney representation. I would like to note that, in many of these families, English is not the first language, further adding to problems with understanding appeals rights. In order to provide the best service to all of our customers, and to reduce reliance on outside interpreters, SSA has recently focused on hiring more bilingual employees as one of its key change initiatives. In the last five fiscal years, SSA hired over 1,700 full-time bilingual employees to serve the public in our field offices and teIeservice centers. As a result, SSA's own employees are currently capable of translating and interpreting in at least 22 different languages.

On February 18th, SSA sent special notices in simpler language to approximately 75,000 families (or other representative payees) of children whose eligibility for SSI has ceased, and who have not appealed, and also to families who have requested reconsideration, but who did not request continuation of benefit payments. These notices restated our determination regarding the child's eligibility under the new disability standard. In addition, the notices provided a clearer explanation of the child's right to appeal our determination and to request benefit continuation while the appeal is being considered.

I recognize that this step goes above and beyond normal actions. However, concerns were raised that the cessation notice was hard to understand and that SSA was not providing beneficiaries with an accurate and comprehensive explanation of their rights to file an appeal or request benefit continuation.

We ascertained that in some instances inconsistent or incomplete information led to some individuals having an inadequate understanding of their appeal rights. Therefore, I determined that these concerns should be heeded.

As a result of these notices, more than 22,000 of these families have requested that we reconsider our original determination to cease benefits to their children. Over 65 percent of these families have also requested benefit continuation. Additionally, about 5,200 of the families that had previously appealed the cessation determination, but did not request benefit continuation, have now done so.

At this point, we are very early in the review process. As of May 30th we have completed processing on 7,300 of the approximately 36,000 cases subject to re-review.

About 2,600 of the 14,000 cases coded as MR have been completed. Of these cases, a third were revised to continuance. We have completed about 4,600 of 22,000 other targeted cessations. Of these, about 14 percent became continuances after reopening.

Mr. Chairman, it would be inappropriate to assume that these percentages will not change as more cases are worked. These are preliminary results and we have many more reviews to complete. We fully expect the percentages of cessations and allowances to change as more cases are processed. What we are seeing from these early reviews, however, is consistent with our projections that about 100,000 children will ultimately lose benefits.

Medicaid Coverage

Thanks to the urging of President Clinton, last summer Congress passed an amendment as part of the Balanced Budget Act which ensured that children who lose SSI disability benefits as a result of the changes due to welfare reform continue to remain eligible for Medicaid benefits. SSA is working closely with the Health Care Financing Administration (HCFA) and the States to make sure that Medicaid coverage continues for these children. In order to accomplish this, we have provided to HCFA, and made available to all 50 States, lists of children whose SSI eligibility ended due to changes mandated by welfare reform. Additionally, HCFA is working with SSA to write guidelines for States to help ensure that these children continue to rece ive Medicaid.


At the time the interim final regulations were published, SSA estimated that, of the approximately one million children receiving benefits as of December 1996, 135,000 would eventually be determined ineligible for SSI benefits. Now that the redeterminations are mostly completed, and in view of the actions dictated by the findings of the top-to-bottom review, the estimate was revised downward to about 100,000 children when all actions including appeals are completed. This represents approximately 10 percent of the children on the rolls in December 1996. This estimate is consistent with the lower range estimate of the Congressional Budget Office in June 1995. I believe that, based on the early results of our re-reviews, the estimate is still accurate.

I want to emphasize that the SSI childhood disability program continues--and will continue--to help many families of children with disabilities meet their special needs. I am committed to providing fair and equitable administration of the SSI disability program for all children now and in the future. More than 3 out of 4 of those children whose benefits were initially ceased will have received at least 2 separate evaluations of their continuing eligibility. This means that all of these children are receiving the fair and accurate Agency's ability to meet that objective. You have my pledge that I will continue to ensure that children with severe disabilities receive the benefits for which they qualify.