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12-17-97 THE WHITE HOUSE '97 DEC 16 PM7:04 WASHINGTON capied December 16, 1997 Mathews MEMORANDUM TO THE PRESIDENT Reed Fortuna THROUGH: Sylvia Matthews COS FROM: Bruce Reed Diana Fortuna SUBJECT: SSA Report on Implementation of Children's SSI Cutoffs The Social Security Administration intends to release a report this Thursday on its implementation of the new definition of childhood disability for SSI. This report follows Commissioner Ken Apfel's promise, at his confirmation hearing in September, of a "top to bottom" review of SSA's process for redetermining the eligibility of children. As you know, the welfare law tightened the definition of childhood disability for SSI, and required the Social Security Administration to redetermine the eligibility of approximately 288,000 children, out of about one million children now on the rolls. These reevaluations have led to almost 140,000 terminations to date. (At the time the welfare law was enacted, CBO estimated that 180,000 children would lose SSI; when SSA announced its interpretation of the law, it projected that 135,000 children would become ineligible.) Advocates charge that SSA has done a poor job on these reevaluations, causing eligible children to be dropped from the rolls. The report concludes that SSA did a generally good job of redetermining eligibility for these children. The report, however, identifies three areas of concern and announces actions to address them. First, SSA will review the cases of all children "coded" as mentally retarded who were cut from the rolls and have not appealed, This action addresses SSA's finding that some of these children may have been terminated incorrectly. Second, SSA will review a portion of every state's unappealed terminations, choosing the kinds of cases most needing review in each state and focusing heavily on states that SSA has found to have a relatively high error rate. This review will allow SSA to give special attention to states with the highest error rates, without singling them out as "bad actors." Third, SSA will offer all 70,000 families who did not appeal its termination decisions a new opportunity to do SO. These actions, and the problems they address, are further described in an appendix attached to this memo. In all, SSA will review the cases of 48,000 children dropped from the program. (Another 70,000 have appealed.) As a result of these actions, SSA now projects that approximately 100,000 children ultimately will lose SSI benefits. With the report, SSA also plans to release case studies of a random sample of 151 children who have lost benefits. This document is intended to explain to the public what kinds of children are no longer eligible. Most of the children have mental disabilities other than mental retardation, including learning disabilities and attention deficit disorder. Over a third have improved since they were first found eligible. The majority are teenagers; only a handful are age six or younger. Advocates will probably have a mixed reaction to the report -- generally pleased about the actions, but still arguing that SSA's regulation interpreting the statute is needlessly strict. The report does not address the latter issue. The Republican leadership in Congress has been extremely supportive of SSA's implementation of the law to date, but probably will criticize this report on the ground that it bends over backwards to restore benefits. SSA Report on Childhood Disability Process SSA's report examined three areas of concern raised by advocacy groups: I. Mental Retardation Advocates' Charge: Too many children with mental retardation were cut from the rolls. SSA Finding: Of the 136,000 children terminated to date, 42,000 were "coded" as mentally retarded (MR). However, most of these children do not actually have MR, because until recently SSA's systems did not have all the necessary codes. Instead, most of these children have other mental disorders, such as learning disabilities or "borderline intellectual functioning" (which falls short of full-fledged MR). Some unknown subset of the 42,000 do have MR, but either their impairments are not severe enough to qualify them for SSI, or they were denied incorrectly. Even with these terminations, approximately 350,000 children coded as MR will remain on the rolls, out of the total of one million children on SSI. SSA Action: SSA will review all cases terminated that were coded as MR, to ensure that all those decisions were made properly. II. State Variations in Cutoffs Advocates' Charge: Errors in cutoffs appear likely, since termination rates varied widely by state, from 32% in Nevada to 82% in Mississippi. Also, SSA may not have acquired all documentation, such as school records, needed to judge a child's disability. Finally, some states were disqualifying too many families for failure to cooperate without making adequate efforts to reach them. SSA Findings: SSA data show that on average 93% of termination decisions were both accurate and complete (i.e., they included all required documentation). This exceeds SSA's required level of overall state performance for SSI, which is 90.6%. However, 10 states had accuracy/completion rates below 90%. Another 9 states had accuracy/completion rates below the national average. (SSA's experience is that about one-third of the errors identified in these measures will ultimately prove to be accurate decisions that simply lacked documentation.) SSA found that many inaccurate decisions stem from an overly strict interpretation of the new rules for children who exhibit maladaptive behavior. Claims that SSA did not acquire all needed documentation were determined to be largely unfounded. However, SSA found wide state variations in the percentage of children cut off because their families did not cooperate with the redetermination. In a study of such cessations, SSA found that 68% of the cases did not include documentation that all required efforts to contact the family had been made. -2- SSA also performed a regression analysis to determine whether wide state-to-state variations in overall termination rates should be expected because of legitimate factors, such as the child's age and impairment and whether the child was initially added to the rolls based on the less strict criteria eliminated by the welfare law. SSA found that these factors would lead you to expect the cutoff rate to vary from 40% in Idaho to 78% in Mississippi. While this regression analysis does not fully explain the actual state-by-state variance, it does convince SSA that most of the variance among states is due not to errors, but to characteristics of the children. SSA Action: SSA will review a portion of the decisions in all states, focusing more on states with lower accuracy rates. All cases terminated as a result of failure to cooperate will be reviewed. SSA will also provide more training on maladaptive behavior. III. Appeal Rights Advocates' Charge: Too few families are appealing because SSA's notice to families was confusing, and workers discouraged appeals. Also, SSA discouraged families from requesting that benefits be continued during the appeal, and didn't do enough to publicize free legal services. SSA Finding: SSA found that its workers did not discourage appeals, although this may have occurred in isolated instances. At the same time, a survey conducted by SSA confirms that many families did not understand their appeal rights. SSA Action: All 70,000 families of children who were terminated and did not appeal will be given a new opportunity to do so. In addition, all families of children who appealed but did not request continuation of benefits during the appeal will also be given a new opportunity to make that request. SSA will also publicize the availability of free legal services for families. FEB-05-97 11:39 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 1 Wednesday, February 5. 1997 SOCIAL SECURITY Phil Gambino / Tom Margenau For Immediate Release 410-965-8904 Fax 410-966-9973 ADMINISTRATION News Release Statement of Shirley S. Chater, Commissioner of Social Security on the Release of New Childhood Disability Guidelines to Comply With Welfare Reform Provisions "Today we are announcing the publication of regulations containing the guidelines we will use to determine if children with disabilities meet the new definition of disability outlined in the SSI provisions of the new welfare reform law. Because disability is a very complex issue, formulating regulations to implement the law was an enormous task for SSA. The major challenge was to ensure that the intent of Congress was met while working within the framework established by Congress to add additional criteria to the rules to ensure continued benefit eligibility for severely disabled children and their families. We have crafted policy guidelines that, I believe, meet the letter and spirit of the law while protecting the rights of children and families. I want to thank the many dedicated Social Security managers and employees who worked long and tirelessly to make this happen. o] With the implementation of these new rules, we estimate that about 135,000 children will no longer be eligible for SSI benefits. This is consistent with the lower-range estimates made by the Congressional Budget Office. - - - SSA has notified about 263,000 children and their families that this change may affect them. We expect that approximately one-half of these children will continue to receive benefits when evaluated under the new rules. Although you may have seen news articles alleging OPTIONAL FORM 99 (7-90) More -- FAX TRANSMITTAL # of pages To 9 Diane Freinna From SusariDaniels Agency Phone B in 202-358-6044 Fax # 392-936-7028 NSN %11 (1) 5025 1111 GENERAL SERVICES ADMINISTRATION FEB-05-97 11:39 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 2 -- Page 2 .. that children with impairments such as Downs Syndrome, severe mental retardation, autism, or many rare diseases will lose benefits. the new rules provide guidelines for evaluating severe impairments such as these to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well as children with severe impairments that re-occur despite periods of remission. President Clinton has made it very clear that he wants to minimize any adverse consequences that this legislation might have on disabled ] children and their families. The President has proposed in the budget that Medicaid coverage continue for children who lose their SSI benefits as a result of this change in the definition of disability, so that the medical needs of these needy children and families continue to be met. As this agency has always done, SSA will work with families to obtain evidence to substantiate the child's medical condition and if additional evidence is needed, SSA will pay for any consultative examinations that may be required. Also, the parents or guardians for all children have the right to appeal any decision we make. And in most cases, benefits can continue throughout the appeals process, until the child's representative has had the right to present his or her case in person before an administrative law judge. Finally, I have asked my staff to develop plans to track the effects of the implementation of this law. If we discover that changes are necessary or desirable in the law, we will recommend revisions and improvements to the President. We must now begin the challenging process of implementing these new guidelines in a fair and consistent manner across the country." ### SSA Press Office 2/5/97 9:00 a.m. FEB-05-97 11:40 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 3 Talking Points Welfare Reform and New Regulations Published Today Regarding Supplemental Security Income Payments for Disabled Children Background One provision of the Welfare Reform law passed last year changed the SSI definition of disability for children. The new law established a new definition of disability and ordered SSA to discontinue the use of an individualized functional assessment (IFA) process established after the landmark 1990 Zebley Supreme Court decision. This provision was included in welfare reform because Congress was concerned about the rapid growth in the program as the number of children on the benefit rolls grew from 350,000 to 965,000 between 1990 and 1996. Following the law's passage, SSA had the enormous challenge of formulating regulations to implement the law, making sure the intent of Congress to tighten eligibility standards was met while ensuring that severely disabled children and their families would be protected under the new law. Today, SSA published in the Federal Register the new rules for determining disability for children. Key Points --Because disability is a complex issue, SSA faced a very challenging process to carefully develop policy guidelines that meet the letter of the law (a congressionally- mandated tightened definition of disability for children) and the spirit of the law (ensuring that severely disabled children are found eligible for benefits). --Out of approximately 965,000 disabled children currently receiving benefits, SSA estimates that about 135,000 children will potentially lose monthly benefits that average about $425 per month. This number is consistent with the lower-range estimates made by the Congressional Budget Office. I understand that most of those affected can be broadly categorized as children with certain mental impairments, such as less severe learning disabilities or behavioral disorders. --Although you may have seen news articles alleging that children with impairments such as Downs Syndrome, severe mental retardation, autism, or many rare diseases will lose benefits, the new rules provide guidelines for evaluating severe impairments such as these to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well as children with severe impairments that re-occur despite periods of remission. FEB-05-97 11:40 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 4 --President Clinton has made it very clear that he wishes to minimize any adverse effects this legislation may have on children and families. Towards this end, the President has proposed that Medicaid coverage continue 10 children who lose their SSI benefits as a result of welfare reform, SO that the medical needs of these needy children and families continue to be met. In addition, SSA is going to track the effects of the implementation of this law. If they discover that revisions or improvements in the new law are needed, they will recommend such changes to the President. --SSA is committed to implementing the new rules in a fair and consistent manner across the U.S. SSA will obtain any evidence needed to substantiate a child's medical condition. In addition, parents or guardians of affected children will have the right to appeal any decision SSA makes and, in most cases, benefits can continue throughout the appeals process. Possible Questions and Answers By statute, the new eligibility standard for disabled children was to be published in the Federal Register by 11/22/96. Why did it take so long to issue these regulations? A: Because these new rules will have a direct impact on thousands of low-income disabled children, it was essential that SSA take enough time to ensure that the new guidelines meet both the letter and spirit of the law in protecting the SSI eligibility for severely disabled children. Working within the general framework established by the Congress, SSA had to carefully examined all its eligibility criteria and, where desirable, add additional functional criteria to the standards to ensure that SSI eligibility for children with severe disabilities will be protected. Q: How many disabled children will lose monthly payments? Who are the children that will loose benefits? A: It is estimated that out of approximately 965,000 children currently on the rolls, about 135,000 children will no longer be eligible for SSI payments. (This number was in the low-range of the CBO estimates.) Those affected are children who were allowed benefits based on the individualized functional assessment (IFA) that was eliminated by the welfare reform law. Many can be broadly categorized as children with certain mental impairments, such as less severe learning disabilities and behavioral disorders. Q: Was the President involved in the decision of the new disability standard? FEB-05-97 11:40 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 5 A: Since the passage of welfare reform, the White House has been working with agency officials to ensure that all affected agencies implement the new law consistently and properly. As a result, SSA consulted with the White House in establishing the new standard, particularly to discuss policy and legal issues that arose. I lowever, as the agency head, the Commissioner of Social Security has made the final decision on behalf of the President. The President fully supports that decision. Q: I low much money will be saved by the new rules? Was the budget a major consideration in establishing the new rules? A: I understand that program savings of about $4.8 billion is estimated in the 6- year period starting with FY 1997. SSA has stated that budget implications were not a major consideration in establishing the new rules. SSA relied on the Statute itself as well as its legislative history. ≈: The advocates are arguing that the new standard is too strict and that Congress gave the agency much leeway in the Statute to establish a more lenient standard? Why such a strict interpretation? A: It is my understanding that it was very clear from the welfare reform law and the legislative history that Congress meant to establish this severity standard in the new law. These new rules meet that legislative intent while including important additional elements to ensure that severely disabled children continue to be eligible for benefits. Q. Is the President concerned about the affect of the new law on low- income disabled children? If so, what is he going to do about it? A: Yes, the Administration is concerned and has taken several steps to limit any adverse consequences of the law. First, while meeting congressional intent, SSA worked within the framework established by Congress to add additional criteria to the new rules that ensure continued eligibility for severely disabled children. (The 135,000 number of expected benefit terminations was in the low range of CBO estimates for the law.) Second, the President has proposed that Medicaid coverage continue for children who lose SSI benefits as a result of welfare reform, SO that the medical needs of families continue to be met Third, SSA will be tracking the effects of the implementation of the new law. If they discover that changes are needed in the law, they will recommend such changes to the President. SSA Press Office 2/5/97 9:00 a.m. FEB-05-97 11:41 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 6 A Fact Sheet on Welfare Reform and SSI Childhood Disability Background One provision of the Welfare Reform law passed last year changed the SSI definition of disability for children, completely separating it from the definition of disability for an adult. The basic definition of disability for the Supplemental Security Income program for an adult states that a person must have a condition that is severe enough to prevent him or her from doing substantial work and is expected to last for at least 12 months -- or result in death. SSA uses a multi-step process to decide if an adult meets this definition of disability. One of the most common steps involves the use of a set of evaluation guidelines that contain a list of impairments for each major body system (including mental impairments) that are so severe they automatically mean a person is disabled. If a condition does not meet the criteria on the list, or cannot be considered equal in severity to a condition on the list, then the agency considers vocational factors (age, education, and work experience) to decide if a person has a condition that prevents him or her from working, thus qualifying that person for disability benefits. Because children, especially younger children, generally do not work, the vocational steps in the disability evaluation process do not apply to them. So, until 1990, the final decision about a child's disability was based on the criteria in the Listing of Impairments. A 1990 Supreme Court decision ordered SSA to develop another step in the evaluation process, analogous to the vocational rules used for adults, that would consider a child's ability or inability to function in a manner similar to children of the same age. In response to the Court's decision, SSA developed a process known as the Individualized Functional Assessment (IFA). Between 1990 and 1996, the number of children eligible for SSI benefits increased from approximately 350,000 to more than 965,000. About one-third of the children entitled during this period were entitled based on the IFA. In addition, there were anecdotal reports of parents coaching children to qualify for benefits, although studies by SSA, the Office of the Inspector General, and the General Accounting Office did not find any evidence of fraud and abuse. The Welfare Reform Act On August 22, 1996, the Welfare Reform Act was enacted. One of its provisions changed the SSI definition of disability for children. The new law states that a child's impairment--or combination of impairments--will be considered disabling if it causes "marked and severe functional limitations." The new law established a new definition of disability for children and ordered SSA to discontinue the use of the IFA. FEB-05-97 11:41 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 7 Because disability is a complex issue, formulating regulations to implement the law was an enormous task. The major challenge was to ensure that the intent of Congress was met while working within the framework established by Congress to add additional criteria to the rules that ensure continued benefit eligibility for severely disabled children. In addition to it's own disability policy specialists, SSA consulted with administration and congressional colleagues. The result is a set of policy guidelines that meet the letter and spirit of the law while protecting the rights of children and families. The New Disability Standard Under the welfare reform law, a child's impairment, or combination of impairments, is disabling if it causes "marked and severe functional limitations." Congress |________________________ eliminated the IFA process and the language in the conference report clearly indicated that SSA should use listing-level severity as the test for entitlement to benefits. The new law and the conference report language also emphasized the importance of functional assessments. The new rules, therefore, define listing-level severity for functional limitations. The severity of an impairment in the listings is generally shown by a) "marked" limitations in either two broad areas of functioning, such as social functioning and personal walk. functioning; or b) extreme limitations in one area of functioning, such as inability to The new rules reflect both the letter and spirit of the law. They provide an accurate mechanism to ensure that needy children with severe disabilities continue to qualify for SSI payments while fairly implementing the intent of Congress. While eliminating the IFA, and incorporating other specified changes in the listings, the new rules incorporate several features that will help to better evaluate children under the new law. The new rules add an area of "motor" functioning to ensure that limitations from physical conditions are not overlooked. The new rules also emphasize the importance of "functional equivalence" by providing guidelines that direct disability evaluators to consider conditions that are not necessarily defined in the listings, but are as severe as a condition in the listings. For example, guidance is included on the evaluation of chronic, episodic impairments in children, which can be severe but difficult to evaluate. Finally, a new form has been created to guide decision-makers through the new rules to ensure consistency in applying the criteria. Who is affected? SSA estimates that about 135,000 children, out of approximately 965,000 children who currently receive SSI, will no longer be eligible for monthly benefits. This is consistent with the lower-range estimates made by the Congressional Budget Office. FEB-05-97 11:41 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 8 3 Most of the children affected by the new definition of disability can be broadly categorized as those with certain mental impairments, such as less severe learning disabilities and behavioral disorders. Although some news articles have alleged that children with impairments such as Downs Syndrome, severe mental retardation, autism, or many rare diseases will lose benefits, the new rules provide guidelines for evaluating severe impairments such as these to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well children with severe impairments that re-occur despite periods of remission. Implementing the new guidelines One of SSA's highest priorities over the next several months will be to make sure that the new disability guidelines are implemented fairly and consistently across the country. SSA was required to notify the parents or guardians of children already getting SSI benefits who are potentially affected by the welfare reform bill by January 1, 1997. Last December, SSA sent letters to about 263,000 children who may have their cases reviewed using the new guidelines. During February 1997, SSA personnel will be trained on the new procedures. By mid-month, SSA will begin interviewing the parents or guardians of the children affected to get current information about their medical conditions. If additional medical or other evidence is necessary to determine if the child is still disabled under the new law, SSA will obtain the necessary evidence. The first decisions will go out in March and continue going out throughout this fiscal year. Under the law, no benefits will be stopped before July 1, 1997. Letters sent to the parents or guardians of children no longer considered disabled under the new law will explain their appeal rights, including the fact that benefits can continue during the appeals process until a face-to-face hearing is held before an administrative law judge. Administration Safeguards to Ease the Transition for Families President Clinton has made it very clear that he wishes to minimize any adverse effects this legislation may have on disabled children and their families. The President has proposed that Medicaid coverage continue to children who lose their FEB-05-97 11:42 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 9 4 SSI benefits as a result of welfare reform, SO that the medical needs of needy children and families continue to be met. In addition, SSA is working on procedures to track the effects of the implementation of this law. If the agency discovers that changes are needed in the new law, they will recommend revisions and improvements to the President. Source: SSA Press Office Last updated: 2/5/97 9:00 a.m. Richard 180,000 160,000 - Kids currently 2002 new snapshot 70,000 current 90,000 now 180 - 135 45 110 190 135 135 110 90 45 330 225 180 FEB-04-97 12:42 FROM: OC/WASHINGTON ID: 2024827139 PAGE 1 FACSIMILE SHEET SOCIAL SECURITY ADMINISTRATION Office of the Commissioner Suite 823, 500 E Street, SW, Washington, DC 20254-0001 Brueel Date: 2/4/97 Elena Number of Pages: 9 Perrin To: Diana Fortuna From: Brian D. Coyne Chief of Staff Location/Organization: Telephone Number: (202) 358-6013 Telephone Number: Fax Number: (202) 358-6076 Fax Number: 456-7431 Message: I Revised steets ) Timetime Kids Kidreach FEB-04-97 12:42 FROM: OC/WASHINGTON ID: 2024827139 PAGE 2 Tuesday, February 4. 1997 Phil Gambino / Tom Margenau For Immediate Release 410-965-8904 Fax 410-966-9973 News Release DRAFT SOCIAL SECURITY DRAFT Statement of Shirley S. Chater, Commissioner of Social Security on the Release of New Childhood Disability Guidelines to Comply With Welfare Reform Provisions "Today we are announcing the publication of regulations containing the guidelines we will use to determine if children with disabilities meet the new definition of disability outlined in the SSI provisions of the new welfare reform law. Because disability is a very complex issue, formulating regulations to implement the law was an enormous task for SSA. The major challenge was to ensure that the intent of Congress was met while working within the framework established by Congress to add additional criteria to the rules to ensure continued benefit eligibility for severely disabled children and their families. We have crafted policy guidelines that, I believe, meet the letter and spirit of the law while protecting the rights of children and families. I want to thank the many dedicated Social Security managers and employees who worked long and tirelessly to make this happen. With the implementation of these new rules, we estimate that about 135,000 children will no longer be eligible for SSI benefits. This is consistent with the lower-range estimates made by the Ken Congressional Budget Office. change may affect them. We expect that approx? one-half of these children SSA has notified about 263,000 children and their families that this will continue to receive benefits when evaluated under the new meekedson rules 4 Although you may have seen news articles alleging that high about -- More FEB-04-97 12:42 FROM: OC/WASHINGTON ID: 2024827139 PAGE 3 -- Page 2 -- children with severe maime impairments such as Downs Syndrome, mental fair? severe retardation, autism, or rare diseases will lose benefits, the new rules provide guidelines for evaluating severe impairments such as these MR to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well as children w/sen. impairments that re-occur despite periods of remission. President Clinton has made it very clear that he wants to minimize ?Ken any adverse consequences that this legislation might have on that Medicaid coverage continue for children who lose disabled children and their families. The President has their proposed SSI the budyet benefits as a result of welfare reform, so that the medical needs of these needy children and families continue to be met. this SSA will obtain evidence to substantiate the child's medical condition. Also, the parents or guardians for all children have the right to appeal any decision we make. And in most cases, benefits payfor exams can continue throughout the appeals process, until the child's representative has had the right to present his or her case in person before an administrative law judge. Finally, I have asked my staff to develop plans to track the effects of the implementation of this law. If we discover that changes are necessary or desirable in the law, we will recommend revisions and improvements to the President. We must now begin the challenging process of implementing these new guidelines in a fair and consistent manner across the country." ### outreach? SSA Press Office 2/4/97 11:00 a.m. FEB-04-97 12:42 FROM: OC/WASHINGTON ID: 2024827139 PAGE 4 Internal Shriver,eter Talking Points Welfare Reform and New Regulations Published Today Regarding Supplemental Security Income Payments for Disabled Children Background estable new Def. One provision of the Welfare Reform law passed last year changed the SSI definition of disability for children. The new law ordered SSA to discontinue the use of an individualized functional assessment (IFA) process established after the landmark 1990 Zebley Supreme Court decision and, instead, established a new definition of disability. This provision was included in welfare reform because -St Congress was concerned about the rapid growth in the program as the number of et children on the benefit rolls grew from 350,000 to 950,000 between 1990 and 1996. Following the law's passage, SSA had the enormous challenge of formulating regulations to implement the law, making sure the intent of Congress to lighten eligibility standards was met while ensuring that severely disabled children and their families would be protected under the new law. Today, SSA published in the Federal Register the new rules for determining disability for children. Key Points --Because disability is a complex issue, SSA faced a very challenging process to carefully develop policy guidelines that meet the letter of the law (a congressionally- mandated tightened definition of disability for children) and the spirit of the law No (protecting the rights of disabled children and their families). ensure that severaly dis ch as JA eli of at rue 4 Imactant --Out of approximately 950,000 disabled children currently receiving benefits, SSA estimates that about 135,000 children will potentially lose monthly benefits that average about $425 per month. This number is consistent with the lower-range estimates made by the Congressional Budget Office. I understand that most of those affected can be broadly categorized as children with certain mental impairments, such as less severe learning disabilities or behavioral disorders. --Although you may have seen news articles alleging that children with severe impairments such as Downs Syndrome, mental retardation, autism, or rare diseases will lose benefits, the new rules provide guidclines for evaluating severe impairments such as these to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well assimpairments that re-occur despite periods of remission. chw/sev. --President Clinton has made it very clear that he wishes to minimize any adverse effects this legislation may have on children and families. Towards this end, the President has proposed that Medicaid coverage continue to children who lose their FEB-04-97 12:43 FROM: OC/WASHINGTON ID: 2024827139 PAGE 5 SSI benefits as a result of welfare reform, so that the medical needs of needy children and families continue to be met. In addition, the Administration is going to track the effects of the implementation of this law. If they discover that revisions or improvements in the new law are needed, they will recommend such changes to the President. --SSA has informed the President that they is are committed to implementing the new rules in a fair and consistent manner across the U.S. SSA will obtain any evidence needed to substantiate a child's medical condition. In addition, parents or guardians of affected children will have the right to appeal any decision SSA makes and, in most cases, benefits can continue throughout the appeals process. Possible Questions and Answers By statute, the new eligibility standard for disabled children was to be published in the Federal Register by 11/22/96. Why did it take so long to issue these regulations? in protecting A: Because these new rules will have a direct impact on thousands of low-income disabled children, it was essential that SSA take enough time to ensure that the new guidelines meet both the letter and spirit of the law and at the same time protect the ?? SSI eligibility for severely disabled children. Working within the general framework established by the Congress, SSA had to carefully examined all its medical criteria and, where desirable, add additional functional criteria to the standards to ensure that SSI eligibility for children with severe disabilities will be protected. elig ≈ How many disabled children will lose monthly payments? Who are the children that will loose benefits? A: It is estimated that out of approximately 950,000 children currently on the rolls, about 135,000 children will no longer be eligible for SSI payments. (This number was in the low-range of the CBO estimates.) The majority of those affected ?All? are children who were allowed benefits based on the individualized functional assessment (IFA) that was eliminated by the welfare reform law. Many can be broadly categorized as children with certain mental impairments, such as less severe learning disabilities and behavioral disorders. 2: Was the President involved in the decision of the new disability standard? A: Since the passage of welfare reform, the White House has been working with agency officials to ensure that all affected agencies implement the new law consistently and properly. As a result, SSA consulted with the White House in establishing the new standard, particularly to discuss policy and legal issues that arose. However, as the agency head, the Commissioner of Social Security has made the final decision on behalf of the President. The President fully supports that Ken FEB-04-97 12:43 FROM: OC/WASHINGTON ID: 2024827139 PAGE 6 decision. Q: How much money will be saved by the new rules? Was the budget a major consideration in establishing the new rules? 4.6 A: I understand that program savings of about $8 billion is estimated in the 6. A year period starting with FY 1997. SSA has stated that budget implications were not a major consideration in establishing the new rules. However, SSA did rely on 7 the Statute itself as well as its legislative history. & The advocates are arguing that the new standard is too strict and that Congress gave the agency much leeway in the Statute to establish a more lenient standard? Why such a strict interpretation? A: It is my understanding that it was very clear from the welfare reform law and the legislative history that Congress meant to establish this severity standard in the new law. These new rules meet that legislative intent while including important additional elements to ensure that severely disabled children continue to be eligible for benefits. Q. Is the President concerned about the affect of the new law on low-income disabled children? If so, what is he going to do about it? A: Yes, the President is concerned and has taken numerous sereral steps to limit any Adm No minimize adverse consequences of the law. First, while meeting congressional intent, SSA worked within the framework established by Congress to add additional criteria to the new rules that ensure continued eligibility for severely disabled children. (The 135,000 number of expected benefit terminations was in the low range of CBO estimates for the law.) Second, the President has proposed that Medicaid coverage continue for children who lose SSI benefits as a result of welfare reform, so that the medical needs of families continue to be met. Third, SSA will be tracking the effects progress and development of those children that lose benefits based on the new law. If they discover that changes are needed in the law, they will recommend such changes to the President. SSA Press Office 2/4/97 11:00 a.m. FEB-04-97 12:43 FROM: OC/WASHINGTON ID: 2024827139 PAGE 7 A Fact Sheet on Welfare Reform and SSI Childhood Disability Richard for and anabilit One Background provision of the Welfare Reform law passed last year changed the SSI definition of disability for children The basic definition of disability for the Supplemental Security Income program states that a person must have a condition that is severe enough to prevent him or her from doing substantial work and is expected to last for at least 12 months or result in death. SSA uses a multi-step process to decide if an adult meets this definition of disability. One of the most common steps involves the use of a set of evaluation guidelines that contain a list of impairments for each major body system (including mental still impairments) that are so severe they automatically mean a person is disabled. If a condition does not meet the criteria on the list, or cannot be considered equal in severity to a condition on the list, then the agency considers vocational factors (age, education, and work experience) to decide if a person has a condition that prevents long him or her from working, thus qualifying that person for disability benefits. Because children, especially younger children, generally do not work, the vocational steps in the disability evaluation process do not apply to them. So, until 1990, the final decision about a child's disability was based on the criteria in the Listing of Impairments. A 1990 Supreme Court decision ordered SSA to develop another step in the evaluation process, analogous to the vocational rules used for adults, that would consider a child's ability or inability to function in a manner similar to children of the same age. In response to the Court's decision, SSA developed a process known as the Individualized Functional Assessment (IFA). Between 1990 and 1996, the number of children eligible for SSI benefits increased from approximately 350,000 to more than 950,000. Only about one-third of the children entitled during this period were entitled based on the IFA. In addition, there were anecdotal reports of parents coaching children to qualify for benefits, although studies by SSA, the Office of the Inspector General, and the General Zirly Accounting Office did not find any evidence of traud and abuse. The Welfare Reform Act On August 22, 1996, the Welfare Reform Act was enacted. One of its provisions changed the SSI definition of disability for children. The new law states that a child's impairment--or combination of impairments--will be considered disabling if it causes "marked and severe functional limitations." The new law ordered SSA to discontinue the use of the IFA process and, to establish a new definition of disability for children. Two Because disability is a complex issue, formulating regulations to implement the law was an enormous task. The major challenge was to ensure that the intent of Congress was met while working within the framework established by Congress to FEB-04-97 12:44 FROM: OC/WASHINGTON ID: 2024827139 PAGE 8 add additional criteria to the rules that ensure continued benefit eligibility for severely disabled children. In addition to it's own disability policy specialists, SSA consulted with administration and congressional colleagues. The result is a set of policy guidelines that meet the letter and spirit of the law while protecting the rights of children and families. The new regulations will be submitted to Congress for their review as required under the law. Add new G imagel immed, The New Disability Standard clearly Under the welfare reform law, a child's impairment, or combination of impairments, is disabling if it causes "marked and severe functional limitations." Congress eliminated the IFA process and the language in the conference report indicated that SSA should use listing-level severity as the test for entitlement to benefits The new night law and the conference report language also emphasized the importance of functional assessments. Bren The new rules, therefore, define listing-level severity for functional limitations. The severity of an impairment in the listings is generally shown by marked" limitations in either a) two broad areas of functioning, such as social functioning and personal ]* functioning; or b) extreme limitations in one area of functioning, such as inability to walk. The new rules reflect both the letter and spirit of the law. They provide an accurate mechanism to ensure that needy children with severe disabilities continue to qualify for SSI payments while fairly implementing the intent of Congress. improve/sette While eliminating the IFA, and incorporating other specified changes in the listings, the new rules incorporate several features that will help to evaluate children under the new law. The new rules add an area of "motor" functioning to ensure that limitations from physical conditions are not overlooked. The new rules also emphasize the importance of "functional equivalence" by providing guidelines that direct disability evaluators to consider conditions that are not necessarily defined in the listings, but are as severe as a condition in the listings. For example, guidance is included on the evaluation of chronic, episodic impairments in children. which can beldifficult to evaluate. Finally, a new form has been created to guide decision- makers through the new rules to ensure consistency in applying the criteria. severe but Who is affected? SSA estimates that about 135,000 children, out of approximately 950,000 children who currently receive SSI, will no longer be eligible for monthly benefits. This is consistent with the lower-range estimates made by the Congressional Budget Office. Most. of the children affected by the new definition of disability can be broadly categorized as those with certain mental impairments, such as less severe learning disabilities and behavioral disorders. FEB-04-97 12:44 FROM: OC/WASHINGTON ID: 2024827139 PAGE 9 3 Although some news articles have alleged that children with severe impairments such as Downs Syndrome, mental retardation, autism, or rare diseases will lose benefits, the new rules provide guidelines for evaluating severe impairments such as these to ensure that such children remain eligible for SSI benefits. In addition, these new rules include more guidance to ensure careful evaluations of children with physical impairments as well impairments that re-occur despite periods of remission. Implementing the new guidelines One of SSA's highest priorities over the next several months will be to make sure that the new disability guidelines are implemented fairly and consistently across the country. SSA was required to notify the parents or guardians of children already getting SSI benefits who are potentially affected by the welfare reform bill by January 1, 1997. Last December, SSA sent letters to about 263,000 children who may have their cases reviewed using the new guidelines. During early February 1997, now SSA personnel will be trained on the new procedures. By mid-month, SSA will begin interviewing the parents or guardians of the children affected to get current information about their medical conditions. If additional medical or other evidence is necessary to determine if the child is still disabled under the new law, SSA will obtain the necessary evidence. The first decisions will go out in March and continue going out throughout this fiscal year. Under the law, no benefits will be stopped before July 1, 1997. Letters sent to the parents or guardians of children no longer considered disabled under the new law will explain their appeal rights, including the fact that benefits can continue during the appeals process until a face-to-face hearing is held before an administrative law judge. Administration Safeguards to Ease the Transition for Families President Clinton has made it very clear that he wishes to minimize any adverse effects this legislation may have on disabled children and their families. The President has proposed that Medicaid coverage continue to children who lose their SSI benefits as a result of welfare reform, so that the medical needs of needy children and families continue to be met. SSA In addition, the Administration is working on procedures to track the effects of the implementation of this law. If the agency discovers that changes are needed in the new law, they will recommend revisions and improvements to the President. Source: SSA Press Office Last updated: 2/4/97 11:00 a.m. FEB-04-97 19:46 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 1 TO: Diane F. (RTW) (RTW) list other list January 29, 1997 for briefings NOTE TO KEN McGILL Subject: OComm List for Use in Inviting National Organizations to Attend Briefings on the SSA Alternative Rehabilitation Provider Initiatives- INFORMATION The liaison staff in the Office of National Affairs has compiled the attached list of organizations for your use. They believe that these organizations would be interested in being included in briefings on the new alternative provider rehabilitation program initiatives. They have also suggested that Susan Daniels, Associate Commissioner for Disability, would be the most logical SSA spokesperson at these briefings, and we believe she could do an outstanding job of explaining the regulations as well. Should you have questions, please contact me or Martha Seabrooks in OComm (who compiled the list for the OComm Disability Programs and Welfare Reform Team) 7 Fred Crawford CC: Charles Fosler Martha Seabrooks. FEB-04-97 19:46 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 2 Scott Marshall, Director of Public Relations American Foundation for the Blind (202) 457-1487 1615 M Street, NW Suite 250 Washington, DC 20036 Judith Moore, President and CEO National Industries for the Blind (703) 9980770 1901 North Beauregard Street Suite 200 Alexandria, Virginia 22311-1727 Marc Maurer, President National Federation of the Blind (410) 659-9314 1800 Johnson Street Baltimore, Maryland 21230 Leroy F. Saunders, President American Council of the Blind (202) 467-5081 1155 15th Street, NW Suite 720 Washington, DC 20005 National Association of the Deaf; (410) 587-1788 814 Thayer Avenue Silver Spring, Maryland 20910 Self Help for Hard of Hearing People, Inc.; (301) 657-2249 7910 Woodmont Avenue Bethesda, Maryland 20814 American Society for Deaf Children (800) 942-2732 2848 Arden Way Suite 210 Sacremento, California 93825-1373 (though its headquarters is in Sacramento, CA, this office has a representative in the D.C. area and this group is and has been very vocal about the welfare reform and the childHood benefits) Northern Virginia Resource Center for Deaf and Hard of Hearing Persons (703) 352-9055 Association of Late-Deafened Adults (815) 899-3040 10310 Main Street Box 274 FEB-04-97 19:47 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 3 Fairfax, Virginia 22030 Center for the Study of Social Policy 1250 Eye Street NW Suite 503 Washington DC 20009 Tom Joe Director P 202 371-1565 f 212 371-1472 Center on Social Welfare Policy and Law 275 Seventh Avenue Suite 1205 New York, NY 10001-6708 P 212 633-6967 f 212 633-6371 Council on Social Work Education 1600 Duke Street Suite 300 Alexandria, VA 22314 Donald W Beless Ph.D., Executive Director P 703 683-8080 f 703 683-8099 Families, USA Families 1334 G Street, NW Washington DC 2005 Phyllis Torda Director, Health and Social Policy Ronald F. Pollack, President P 202 628-3030 f 202 347-2417 Family Service America 11700 W Lake Park Drive Milwaukee, WI 53224 Peter Goldberg CEO & President p (414) 359 1040 Nat'l Assoc of Public Child Welfare Admin C/O Amer Public Welfare 810 First Street, NE Suite 500 Washington, DC 20002-4267 Elizabeth Thielman, Project Manager P (202) 682-0100 f (202) 289-6555 Nat'l Assoc of Social Workers 750 First Street Washington, DC 20002-4241 Sheldon Goldstein, Exec Dir P (202) 408-8600 f (202) 336-8312 FEB-04-97 19:47 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 4 Amer Assoc on Mental Retardation* M. Doreen Croser, Exec. Dir. 444 N. Capitol St., NW, Ste. 846 Washington, DC 20001-1512 Amer Diabetes Association Myrl Weinberg Dir. Gov't. t. Affairs 1660 Duke St., P.O. Box 25757 Alexandria, VA 22314 Arc* Marty Ford Asst Dir, Gov Affair 1730 K Street, NW, Suite 1212 Washington, DC 20006 Autism Society of America* Veronica Zysk Administrative Dir 7910 Woodmont Ave., Ste. 650 Bethesda, MD 20814 Bazelon Center for Mental Health Law Rhoda Schulzinger 1101 15th Street, NW, Suite 1212 Washington DC 20005 Brain Injury Association Alice Demichelis Legislative Liaison 1776 Massachusetts Ave., NW, Suite 100 Washington, DC 20036 Consortium for Citizens with Disabilities* Marty Ford Co-Chair, SSA Task F c/o The Arc, 1522 K Street, NW, Suite 516 Washington, DC 20005 Disabled American Veterans* Arthur Wilson Natl. Adjutant 807 Maine Avenue, SW Washington, DC 20024 Epilepsy Foundation of America Paulette Maehara CEO 4351 Garden City Drive, Suite 406 Landover, MD 20785 Learning Disabilities Assoc of Amer Justine Maloney FEB-04-97 19:47 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 5 4156 Library Road Pittsburgh, PA 15234 Muscular Dystrophy Association Robert Fitzgerald Human Resources Dir 3300 E. Sunrise Drive Tucson, AZ 85718 Nat'l Alliance for Mentally Ill Laurie M. Flynn Executive Director 2101 Wilson Blvd., Ste. 302 Arlington, VA 22201 Nat'l Assoc of Developmental Dis Coucil Chris Metzler Asst Exec Dir 1234 Massachusetts Ave., NW, Suite 103 Washington, DC 20005 Nat'l Assoc of Protection & Advocacy System Vicki Smith Deputy Dir 900 2nd Street, NE, Suite 211 Washington, DC 20002 Nat'l Assoc of St Dir of Dev Disabled Servs Robert M. Gettings Executive Director 113 Oronoco Street Alexandria, VA 22314 Nat'l Assoc of St Mental Hlth Prog Dir Robert Glover Executive Director 66 Canal Center Plz, Suite 302 Alexandria, VA 22314-1591 Nat'l Down Syndrome Congress* Michael Leonard 1605 Chantilly Dr., Ste. 250 Atlanta, GA 30324-1146 Nat'l Easter Seal Society* Randy Rutta VP Govt Affairs 700 13th St., NW Washington, DC 20005 Nat'l Mental Health Association Al Guida VP Gov Affairs 1021 Prince Street FEB-04-97 19:47 FROM: ODCLCA DC 202 3586074 ID: 6074 PAGE 6 Alexandria, VA 22314-2971 Nat'l Multiple Sclerosis Society* Robert Enteen Public Policy Assoc. 733 3rd Ave. New York, NY 10017 Nat'l Org of Soc Sec Claimants' Reps Cathy Thompson Staff 6 Prospect Street Midland Park, NJ 07432 Nat'l Senior Citizens Law Center Ethel Zelenske Staff Attorney 1815 H Street, NW, Suite 700 Washington, DC 20006 Paralyzed Veterans of America* Gordon Mansfield Executive Director 801 18th Street, NW Washington, DC 20006 FEB-05-1997 14:42 HCFA-OLIGA 2026908168 P.01 HUMAN SERVICES ,USA HEALTH HCFA 8 FAX COVER SHEET MEDICARE MEDICAID - Care Family Minicistration DEPARTMENT OFFICE OF LEGISLATIVE & INTER-GOVERNMENTAL AFFAIRS Number of Pages: cover + \ Date: 2/5/97 From: To: Diana Fortuna Jennie Bonney Fax: Fax: 202-690-8168 Phone: Phone: REMARKS: FYI - here is SSAs write up of the health provisions I don't have anything on the "ticket" HEALTH CARE FINANCING ADMINISTRATION 200 Independence Ave., SW Room 341-H, Humphrey Building Washington, DC 20201 FEB-05-1997 14:43 HCFA-OLIGA 2026908168 P.02 DRAFT The Right Incentive: Health Care Security Additionally, the Health Care Financing Administration will propose to create more health care access for beneficiaries who return to work. For Medicare, the proposal would extend Part-A coverage premium free for those who work beyond the current coverage period during a 4-year demonstration. For Medicaid, States would have an option to extend Medicaid coverage for people who work beyond current coverage levels. States would be allowed to create a sliding-scale premium for those individuals who choose this coverage. These proposals represent a new opportunity for people with disabilities to make the move from dependence to independence. with greater access to and confidence in the stability of health care and more choice and flexibility in employment services, Americans with disabilities will have greater opportunities for productive and secure lives. FAx to Jennie Benney FAX 202-690-8168 Jennie look OK to you? OPTIONAL FORM " (7-30) FAX TRANSMITTAL of Dept./Agency To Jennie Bonney From Ken , pages Phone 410-965-3988 Fax 202-690-8168 , Fax 9 440-966-8591 NBN 7540-01-317-7368 5099-101 GENERAL SERVICES ADMINISTRATION TOTAL P.02 FEB-05-97 12:58 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 1 Fact Sheet Social Security Proposes "Ticket to Independence" for Disabled Beneficiaries: Background: The Social Security Administration (SSA) now pays more than $36 billion a year in disability insurance benefits to 4.5 million disabled workers, and pays $25 billion a year in Supplemental Security Income to more than S million low-income people with disabilities. Today Social Security refers disabled beneficiaries to State vocational rehabilitation agencies. SSA reimburses these State agencies for their costs in providing rehabilitation services when the beneficiary works for nine months. Last year SSA paid state VR agencies about $71 million for approximately 6,000 disabled beneficiaries who returned to work. Proposal: The President's fiscal year 1998 budget proposes a new initiative, in partnership with the private sector, to help more beneficiaries achieve their goals of leaving the benefit rolls and returning to work. SSA will begin in five to ten states to pilot the new approach: Consumer Choice: Disabled beneficiaries will receive a "ticket to independence" to use with any participating public or private employment or rehabilitation provider of their choice. Paying for Results: The provider will be paid when the beneficiary works and no longer receives cash benefits. Health Care Incentives: Disabled beneficiaries will have more secure health care coverage. A demonstration project will extend Medicare beyond the current-law maximum for some beneficiaries returning to work. For SSI beneficiaries who work. States would have the option to extend Medicaid coverage beyond current- law limits as well. Advantages over current law: Creates a public-private partnership between Social Security and private employment/VR agencies with the goal of returning beneficiaries to work. Offers potentially significant savings to the Social Security trust funds by helping Americans with disabilities to work. Gives beneficiaries the control and flexibility they need in securing VR services. Minimizes bureaucratic involvement in the choice of providers and services. Feb. 4, 1997 OPTIONAL FORM 99 90) FAX TRANSMITTAL # 01 pages 3 To Drain Fortune From Suran Devid Dept /Agency Phone If Fax # Fax # 6011 NSN 7540 111 PAGE 2 FEB-05-97 12:58 FROM: DEPUTY/EXECUTIVE-STAFF ID: Thursday. February 6. 1997 Phil Gambino / Tom Margenau For Immediate Release 410-965-8904 Fax 410-966-9973 Newson Relerase SSA Proposes A "Ticket To Independence" For Disabled Today. when you sign up for disability benefits with Social Security. you may get a referral to a state agency for possible vocational rehabilitation services. In the near future. instead you'll get a "ticket to independence" you can take to a private or public vocational agency in exchange for help in finding work. The President's fiscal year 1998 budget proposes a bold new initiative to leverage innovation in the private sector to help more beneficiaries achieve their goals. to leave the benefit rolls, and return to work. SSA will begin to pilot this new approach in five to ten states. Here are the highlights: Consumer Choice: Disabled beneficiaries will receive a "ticket to independence" to use with any participating public or private employment or rehabilitation provider of their choice. Paying for Results: The provider will be paid when the beneficiary works and no longer receives cash benefits. The Right Incentives: Disabled beneficiaries will have more secure health care coverage. A demonstration project will extend Medicare beyond the current law maximum for some beneficiaries who return to work. For SSI beneficiaries who work. states would have the option to extend Medicaid beyond current law limits as well. Shirley S. Chater, Commissioner of Social Security, called the proposal an important step in fulfilling the President's vision of leveraging private sector initiative to better serve its customers. Also. it will help the President achieve his goal of moving people from exclusion and paternalism to inclusion and empowerment. "President Clinton has said he wants people to be less dependent on government." Chater said. "Our plan is to give disabled Americans who want to work a ticket to independence." -- More --- - - Page 2 - Recognizing that SSA's current work incentive programs simply were not doing FEB-05-97 12:58 FROM: DEPUTY/EXECUTIVE-STAFF ID: PAGE 3 the job - - less than one percent of the approximately 8 million disability recipients successfully return to work each year -- Chater asked her disability managers and staff in 1994 to develop a plan to help disability recipients return to the workplace. After listening to people with disabilities and their advocates. vocational and rehabilitation counselors. as well as employers and other government agencies. SSA developed this unique approach to helping people get off the disability rolls and on the job. Here's how it will work: Once an individual's disability claim is approved. he or she may be given a return to work ticket which can be presented to any approved provider in exchange for employment or rehabilitation services. SSA will pay for results. If the beneficiary returns to work and stops receiving disability benefits. the provider will receive it payment. SSA's return to work policies include other incentives that encourage employment. For example. beneficiaries who try working can keep receiving full monthly disability payments for up to a year after they start a job. And generally. disability recipients who return to work can keep their medicare or medicaid coverage for a number of years after returning to work. "Many of our customers with disabilities tell us they can work if the incentives are right and if the services they need are available." Chater said. "With this plan. we are creating new ways of helping people find work and achieve their goals." The return to work ticket and other incentives apply to both disability programs administered by SSA. The Social Security disability insurance program pays more than $36 billion annually to almost four and one half million people. The Supplemental Security Income disability program pays $25 billion each year to more than five million low-income individuals with disabilities. ### ODCLCA QUICK FAX (202)358-6030- Voice / (202 358-6074/6075- Fax) 2/4/97 TO: Diana Fortuna FROM: Judy Chesser COVER + 11 pages COMMENTS: This form is produced on reused paper PAGE 1 6074 :01 FEB-04-97 18:38 FROM: ODCLCA DC 202 3586074 FAX TU. Diane Fortuna. contacts. Author: William Daly at -SADC Date: 1/30/97 5:00 PM Priority: Normal for children's TO: Frank Jasmine Subject disability list regs. Message Contents attached PAGE 2 6074 : aI FEB-04-97 18:39 FROM: ODCLCA DC 202 3586074 Page 1 Accreditation Council People w/Dev. Disabil Pres.. James Gardner Ph.D. CEO8100 Professional Place, Suite 204 Landover. MD 20785-2225 Alliance of Genetic Support Groups Joseph Smith 38th and R Streets. NW Washington, DC 20007 Pres., Joan O. Weiss Amer. Acad. of Otolary nology-Head & Neck Joseph Goldstein One Prince Street Alexandria. VA 22316 Amer. Assoc. for Counseling & Development John Jaco Govt. Relations Office. 5999 Stevenson Ave. Alexandria. VA 22304 Pres., Doris Cox Amer Assoc on Mental Retardation M Doreen Croser Exec Dir 444 N. Capital Street, NW, Ste. 846 Amer. Assoc of Univ. Affiliated Programs Elaina Eklund, Assoc. Exec. Director 8630 Fenton Street, Suite 410 Silver Spring. MD 20910 Pres., William Jones Ame.r. Athletic Association of the Deaf 1052 Durling Street Ogden, Utah 84403 Amer Council of the Blind Glen Plunkett 1155 15th Street, NW, Suite 720 Washington, DC 20005 Pres., Leory F. Saunders Amer. Diabetes Association Myrl Weinberg, Dir of Gov't Affairs 1660 Duke St., P.O. Box 25757 Alexandria, VA 22314 Amer. Fndn. for the Blind* Scott Marshall Dir., Govt. Relations 1615 M Street, NW, Suite 250 Washington, DC 20036 PAGE 3 6074 :01 FEB-04-97 18:39 FROM ODCLCA DC 202 3586074 Page 2 Amer. Horticultural Therapy Association Mary DeRiso 9200 Wightman Rd., Suite 400 Gaithersburg, MD 20901 Pres., Steven Davis Amer Network of Community Options and Resources Aause Righter 4200 Evergreen Lane, Suite 315 Annadale, VA 22003 Pres, Joni Fritz Amer Occupational Therapy Association Frederick Somers 1383 Piccard Dr., P O. Box 31220 Rockville, MD 20824-1220 Pres., Jeanette Rair Amer. Red Cross 17th and D Streets, NVV Washington, DC 20006 Amer. Soc. For Deaf Children Pres., Jeffery Cohen 814 Thayer Avenue Silver Spring, MD 20910 Amer Speech-Language-Hearing Associati Dr. Frederick T. Spahr 10801 Rockville Pike Rockville, MD 20852 Ame: Tinnitus Association Pres., Gloria t Reich P.O. Box 5 Portland, OR 97207 Assoc. for Education & Rehab of the Blind& Vis Imp Pres., Kathy Megivern Executive Director 206 N Washington Street, Suite 320 Alexandria, VA 22314 Assoc. for Persons in Supported Employm Pres., Wendy Wood Tammara Geary Freeman, Executive Director 1627 Monument Street, Suite 301 Richmond, VA 23220 The Arc Marty Ford Asstn Dir, Gov Affairs ь PAGE ID: 6074 FEB-04-97 18:39 FROM: ODCLCA DC 202 3586074 Page 3 1730 K Street, NW Suite 1212 Washington, DC 20006 Arthritis Foundation 1314 Spriong Street. NW Atlanta, GA 30309 Assoc. for Persons with Severe Disabilities Celane McWhorter 206 W. Glendale Ave Alexandria, VA 22301-2405 Pres., Liz Lindley Assoc. of Late Deafened Adults Pres.. Bill Graham P.O. Box 64173 Chicago, II. 60664 Autism Society of Ametica Veronica Zysk, Administrative Dir 7910 Woodmont Ave, Ste. 650 Bethesda, MD 20814 Better Hearing Institute Pres., Joseph Rizzo 5021-B Backlick Road Annandale, VA 22003 Caption Center Pres., Larry Goldberg 125 Western Avenue Boston, MA 02134 Captioned Films/Videos f/t Deaf Pres., Don Zink 5000 Park Street North St. Petersburg, FL 33709 Conv of Amer Intructors of the Deaf Pres., Claire Bugen P.O. Box 2025 Austin, TX 78768 Catholic Charities USA Deputy to the Pres., Sharon Daly 1731 King St.. Suite 200 Alexandria, VA 22314 Coun. of State Admin of Vocational Rehab. Joseph Owen, Executive Director P.O. Box 3776 Washington, DC 20007 PAGE 5 6074 : aI FEB-04-97 18:39 FROM: ODCLCA DC 202 3586074 Page 4 Ctr. for BiCultural Studies, Inc. Betty Colonomos, Director SSQC. Yenilwarth Ave., Suite 105 Riverdale, MD 20737 Deaf Artist of America, Inc. Pres. Tom Willard 87 North Clinton Avenue Suite 408 Rochester. NY 14604 Deafness & Communicative Disorders Bra Pres.. Wallace Babington 330 C Street SW Room 3303 Washington. DC 20202 Deafness Research Foundation Monte H. Jocoby 9 East 38th Street New York, NY 10016 Deafpride, Inc Ann Champ-Wilson 1350 Potomac Avenue SE Washington, DC 20003 Development Team, Inc. Shirley Roholley 1615 Thames Street, Suite 300 Baltimore, MD 21231 Disability Rights Education & Defense Pat Wright 1633 Q Street, NW, Suite 220 Washington, DC 20009 Pres., Mary I on Breslin Disabled American Veterans Authur Wilson\Nat'l Adjutant 807 Maine Avenue, SW. Washington, DC 20024 Epilepsy Foundation of America Paulette Maehara, CED 4351 Garden City Drive, Suite 406 Landover, MD 20785 Gallaudet University Pres. Dr. I. King Jordah 800 Florida Avenue, NE Washington, D.C 20002-3695 Gazette International Networking Institute Joan Headly, Director 9 PAGE 6274 :01 FEB-04-97 18:39 FROM: ODCLCA DC 202 3586074 Page 5 4207 Lindell Blvd., #110 St. Louis MO 63108-2915 Goodwill Industries Kenneth Shaw Dir. of Rehab. Service 9200 Wisconsin Avenue Bethesda, MD 20814 Pres.. David Cooney HEATH Resource Center (Higher Educ & Adult Train. for People W/Disa One Dupont Circle Washington, DC 20036 Pres., Rhona C. Hartman Hear Now Barbara Rocketts 4001 S. Magnolia Way Suite 100 Denver, CO 80237 Int'l Assoc. of Bus., Industry & Rehab Charles Harles P.O Box 15242 Washington, DC 20003 Int'l Assoc of Psycho Social Rehab Svc Ruth Huqhes, Ph.D., Executive Director 10025 Governor Warfield Pkwy #301 Columbia, MD 21044-3330 Learning Disabilities Assoc. of Amer. Justine Maloney 4156 L ibrary Road Pittsburgh, PA 15234 Muscular Dystrophy Assoc Robert Fitzgerald Human Reources Dir. 3300 E. Sunrise Drive Tucson. AZ 85718 Nat'l Alliance for Mentally III Laurie M. Flynn, Executive Director 2101 Wilson Blvd., Ste 302 Arlington, VA 22201 Nat'l Assoc of Developmental Dis Council Chris Metzler, Asst Exec Dir 1234 Massachusetts Ave., NW, Suite 103 Washington, DC 20005 2 PAGE ID: 6074 FEB-04-97 18:40 FROM: ODCLCA DC 202 3586074 Page 6 Nat'l Assoc of Disability Examiners Pres., Marty Marshall 2704 Frank Street Lansing, MI 48911 Nat'l. Assoc of Rehab. Prof. in Private Bonnie Sheldon 313 Washington Street Newton, MA 02158 Nat'l. Assoc of Rehabilitation Facilities Robert E. Brabham, Ph.D., Executive Director P.O. Box 17675 Washington, DC 20041 Nat'l Assoc of Residential Care Facilities Barbara B. Jameson. Executive Director 2306 F. Broad. Suite 200 Richmond, VA 23220 Nat'l. Assoc. of Special Education Direc. Dr. Martha J Fields 1800 Diagonal Road, Suite 320 Alexandria, VA 22314 National Assoc of St. Dir of Dev Disabled Servs Robert M. Gettings Exec. Director 113 Oronoco Street Alexandria, VA 22314 Nat'l. Assoc. of State Mental Health Program Clarke Ross 444 N. Capitol St., NW, Hall of States Washington, DC 20001 Nat'l. Assoc. of the Deaf Nancy J. Bloch, Exec. Dir. 814 Thayer Ave Silver Spring. MD 20910 Nat'l Black Deaf Advocates, Inc. Pres., Carl M. Moore One Lomb Memorial Drive Rochester, NY 14623 Nat'l. Captioning Institute Pres., John F. D. Ball 5203 Leesburg Pike Falls Church, VA 22041 8 PAGE ID: 6074 FEB-04-97 18:40 FROM ODCLCA DC 202 3586074 Page 7 Nat'l. Catholic Office of The Deaf Pres. Nora Letourneau 814 Thayer Avenue Silver Spring, MD 20910 Nat'l, Congress of Jewish Deaf Pres. Barbara Boyd. 13580 Osborne Street Arleta. CA 91331 Nat'l. Coun on Disability Speed Davis, Acting Exec. Dir. 1331 F Street, NW, Suite 1050 Washington, DC 20004 Nat'l Coun on Independent Living Ann Marie Hughey, Exec. Dir. 2111 Wilson Blvd., Suite 400 Arlington, VA 22201 Nat'l. Ctr. For Law and Deaf Pres., Su DuBow 800 Florida Avenue NE Washington, DC 20002-3695 Nat'l. Cued Speech Assoc. Pres. Pamela Beck 1615-B Oberlin Road Raleigh, NC 27622 Nat'l Down Syndrome Congress Michael Leonard 1605 Chantilly Dr., Suite 250 Atlanta, GA 30324-1146 Natil Easter Seal Society Randy Rutta, Vice Pres Gov. Affairs 700 13th St., NW Washington, DC 20005 Nat'l. Fedn. of the Blind James Gashel, Dir., Public Policy 1800 Johnson Street Baltimore, MD 21230 Pres., Marc Maurer Nat'l. Fraternal Society Of The Deaf Pres., Robert Anderson 1300 W. Northwest Highway Mt. Prospect. IL 60056 Nat'l. Hearing Aid Society Pres., Michael K. Stone 6 PAGE 6074 : aI FEB-04-97 18:40 FROM: ODCLCA DC 202 3586074 Page 8 20361 Middlebelt Road Livonia, MI 48152 Nat'l. Industries for the Blind Robert K. Hanye 524 Hamburg Turnpike, CN 969 Wayne, NJ 07474 Pres.. George J. Mertz Nat'l. Industries for the Severely Hand. Ken Laureys 2235 Cedar Lane Vienna, VA 22182 Pres., Elivind H. Johnson Nat'l. Info. Ctr On Deafness Pres., Laura DiPietro 800 Florida Avenue NB Washington, DC 20002-3695 Nat'l Info Ctr for Child & Youths w/Disabls Suzanne Ripley Information Service Manager 1875 Connecticut Ave. NW Washington, DC 20008 Nat'l. Inst. on Deafness & Other Comm Di Pres., James Snow 9000 Rockville Pike, Building 31, RM 1 Bethesda. MD 20892 Nat'l Mental Health Assoc. AI Guida, Vice President for Gov. Affairs 1021 Prince Street Alexandria, VA 22314-2971 Nat'l Multiple Sclerosis Society Robert enteen, Public Policy Assoc 733 Third Avenue New York, NY 10017 Nat'l Org for Rare Disorders Michael Langan Director of Public Policy PO Box 8923 New Fairfield, Connecticut 06812-8923 Nat'l. Org. on Disability Pres., Alan A. Reich 910 16th Street, NW, Suite 600 01 PAGE 6074 : aI FEB-04-97 18:40 FROM: ODCLCA DC 202 3586074 Page 9 Washington, DC 20006 Nat'l Rehabilitation Association Robert H. Brabham, Executive Director 633 South Washington Street Alexandria, VA 22314 Nat'l. Rehabilitation Info. Center Phil Bongiorno 8455 Colesville Road Suite 935 Silver Spring. Md. 20910 Pres., Mark Odum Nat'l. Resource Ctr. on Homelessness & Ment. III Deborah L. Dennis, Director 262 Delaware Avenue Delmar, NY 12054 Pres., Gail Hutchings Nat'l. Technical Institute for the Deaf Pres., Dr William E. Castle P.O. Box 9887 Rochester, NY 14623 Nat'l. Theatre of the Deaf Pres., David Hays The Hazel E. Stark Center Chester, CT 06412 Paralyzed Veterans of America Gordon Mansfield, Exec Dir 801 18th Street NW Washington, DC 20006 President's Comm. on Employment of People with Disabilities Richard C. Douglas, Executive Director 1331 F Street, NW, 3rd Floor Washington, DC 20004 President's Comm. on Mental Retardation Ashot Mmatazakanian, Exec. Dir WJ Cohen Building, Room 5325 Washington, DC 20201 Registry of Interpreters f/t Deaf, Inc 8719 Colesville Road Suite 310 Silver Spring, Md. 20910 See Ctr f/t Advancement of Deaf Childr Main Office P O. Box 1/181 Los Almitos, CA 90720 PAGE 11 6074 : al FEB-04-97 18:40 FROM: ODCLCA DC 202 3586074 Page 10 Self Help for Hard of Hearing People Pres., Howard Stone 7800 Wisconsin Avenue Bethesda, Md 20814 Spina Bifida Assoc of America Lawrence Pencak. Exec. Dir. 4590 MacArthur Blvd., NW Suite 250 Washington, DC 2007 Telecommunications f/t Deaf Pres., Alfred Sonnenstrahl 814 Thayer Avenue Silver Spring, Md. 2091 10 The Assoc for Persons w/ Severe Handicaps Celane McWhorter, Dir Govt. Relations 1600 Prince Street, Suite 115 Alexandria, VA 22314 United Cerebral Palsy Association John Kemp. Dir. Govt. Affairs 1660 L Street, NW #700 Washington, DC 20036 Vestibular Disorders Branch Pres., Jerry Underwood 1015 NW 22nd Avenue D-230 Portland. OR 97210 Volunteers of America Raymond C. Tremont, National Director 3813 North Causeway Blvd. Metairie, LA 70002 Pres., Clint Chezalher World Federation of the Deaf Pres. Liisa Kauppinen Ilkantie 4. P. 0. Box 65 SF-00401 Helsinki, Finland World Institute on Disability Judy Heumann 700 Constitution Ave., NW Washington, DC 20002 Pres., Edward V. Roberts World Rec Assoc of the Deaf, Inc/USA Pres., Bruce Gross P.O. Box 3211 Quartz Hill, CA 93586 PAGE 12 6074 : 01 FEB-04-97 18:41 FROM: ODCLCA DC 202 3586074