Chapter 2
The Policy Context

This chapter examines the pivotal role of the two benefits programs of the Social Security Administration (SSA) in the system of supports for children and adults with mental retardation: Supplemental Security Income (SSI) and Disability Insurance (DI). This information is essential to set the context of the committee’s conclusions and recommendations. Specifically, changes in the criteria for eligibility determination and the processes of enrollment for benefits affect not only the applicants, but also their families and the service systems in which they are embedded.

The chapter begins with a review of the prevalence of mental retardation in the SSI and DI programs. These data illustrate that chil-

This chapter is drawn largely from a paper written by Susan L. Parish, Ph.D., University of Wisconsin, and David Braddock, Ph.D., University of Colorado, for the committee.



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits Chapter 2 The Policy Context This chapter examines the pivotal role of the two benefits programs of the Social Security Administration (SSA) in the system of supports for children and adults with mental retardation: Supplemental Security Income (SSI) and Disability Insurance (DI). This information is essential to set the context of the committee’s conclusions and recommendations. Specifically, changes in the criteria for eligibility determination and the processes of enrollment for benefits affect not only the applicants, but also their families and the service systems in which they are embedded. The chapter begins with a review of the prevalence of mental retardation in the SSI and DI programs. These data illustrate that chil- This chapter is drawn largely from a paper written by Susan L. Parish, Ph.D., University of Wisconsin, and David Braddock, Ph.D., University of Colorado, for the committee.

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits dren and adults with mental retardation are a large group of recipients, particularly in the SSI program. Prevalence data on the severity of mental retardation, from mild to severe, in this program (and in the DI program) are not available. We then note that these programs serve as a gateway to other critical federal and state benefits—most notably, Medicaid and Medicare. The linkage between SSI and DI benefits and other service programs underscores the importance of such eligibility for people with mental retardation and also raises the political, social, and economic stakes regarding any changes in eligibility criteria and determination procedures. We also discuss the enduring problem of unemployment and underemployment of adults with mental retardation, a fundamental issue undergirding the important role of federal benefits for this population. SSI AND DI RECIPIENTS According to the Office of Research, Evaluation, and Statistics of the Social Security Administration, in December 2000 almost 850,000 children were receiving SSI benefits. These children represented 12.8 percent of the over 6.5 million SSI recipients. Almost two out of three (62.5 percent) of these children had a disability based on a mental disorder, and most of them (32.8 percent of all children, or 261,200 individuals) were eligible because of mental retardation. The incidence of mental retardation as the primary diagnosis for young recipients increased with age, from 3 percent of those under age 3 to 46 percent of those ages 13-17. Data on adult recipients of SSI as of December 2000 indicate that of the 226,792 recipients between ages 18 and 21, 50 percent were eligible because of mental retardation. The percentage of those receiving SSI due to mental retardation by age group gradually decreases with advancing age, from 45.7 percent of those ages 22-29, 33 percent of those ages 30-39, 18.6 percent of those ages 40-49, 10.7 percent of those ages 50-59, and 6.9 percent of those ages 60-64. This pattern likely reflects the increasing numbers of people with other disabilities

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits participating in SSI, rather than a decrease in the number of beneficiaries with mental retardation. Using estimates from December 1999 data, Parish and Braddock (2001) calculated that SSA paid out $20.64 billion in SSI benefits to 4.54 million people with disabilities in the United States in fiscal year 2000. People with mental retardation constituted 23 percent of this total and received 32 percent of the SSI payments. People with mental retardation constituted 9 percent of all people with disabilities who received DI payments, but they received only 6.5 percent of total payments. The contrast in the prevalence of people with mental retardation in the SSI program (23 percent of program recipients) and the DI program (9 percent of program recipients) underscores the fact that most people with mental retardation are not in the labor force, or are not in the labor force for the amount of time required to qualify for DI benefits. Table 2-1 shows the range and scope of benefits paid to recipients with disabilities, and specifically those with mental retardation, during fiscal year 2000. Growth in the SSI population, particularly among children and adolescent recipients, has been a subject of contention during the past two decades. This growth may be attributed to expansion in eligibility due to legislative and regulatory changes, SSA’s increased outreach efforts, limited return-to-work efforts, the increase in the number of non-citizens on the rolls, medical advances enabling people with disabilities to live longer, and state efforts to transfer people with disabilities from state-supported public assistance to SSI. In addition, the need to continue Medicaid coverage has been cited as a reason for retaining people with disabilities on SSI (Mashaw & Reno, 1996; U.S. General Accounting Office, 1995). The number of individuals with mental retardation who receive SSI grew at an average annual rate of 9 percent between 1986 and 1993. In spite of this growth, however, people with mental retardation constituted a fairly level 25 percent of total SSI recipients during the period (U.S. General Accounting Office, 1995), indicating that growth has been as fast for beneficiaries with other disabilities.

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits TABLE 2-1 Benefits Paid to Persons with Disabilities, Fiscal Year 2000 A. Supplemental Security Income (SSI)   All Persons with Disabilities Persons with Mental Retardation   Benefits Paid Recipients Benefits Paid Recipients SSI children $4,439,660,478 847,063 $1,757,927,424 286,121 SSI adults $16,203,653,578 3,690,970 $4,770,256,896 776,409 Total $20,643,314,056 4,538,033 $6,528,184,320 1,062,530 B. Disability Insurance (DI)   All Persons with Disabilities Persons with Mental Retardation   Benefits Paid Recipients Benefits Paid Recipients DI $44,136,908,784 4,873,560 $1,634,153,804 249,871 Adults disabled as children $4,320,897,000 726,250 $1,515,421,383 275,975 Widows/widowers $1,184,645,952 197,520 $53,393,300 9,876 Total $49,642,451,736 5,797,330 $3,202,968,487 535,722   SOURCE: Braddock, D. L., Hemp, R., Parish, S. L., & Rizzolo, M. C. (2000). The state of the states in developmental disabilities: 2000 study summary. Chicago, IL: University of Illinois at Chicago, Department of Disability and Human Development. Reprinted with permission. Growth in the DI and SSI programs has been extensively analyzed, and researchers have offered various reasons for this growth. Applications for disability benefits, DI in particular, have long been directly related to the nation’s overall economy. When the economy is struggling and jobs are scarce, applications for benefits tend to increase (Stapleton et al., 1998). The major reasons for growth in both applications and awards for disability benefits are related to policy changes made in the programs and to the changing business cycle, as opposed

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits to increases in the prevalence of disability (Burkhauser, 1998). In their comprehensive analysis of the impact of an array of population-based, economic, policy, and administrative factors on the growth of disability benefits, Stapleton and his colleagues (Stapleton et al., 1998) found that the growth of applications and awards could be traced to three major causes: (1) a poor economy; (2) action by states to shift welfare spending from shared state-federal (e.g., Aid to Families with Dependent Children, AFDC) to federal (e.g., SSI and DI) programs; and (3) so-called supply changes, including SSA’s outreach activities, the increasing value of benefits, work incentives, eligibility determination changes brought about by legislative and administrative activities, and court decisions on appealed cases. There is widespread agreement that the reasons for the growth in the number of beneficiaries are complex and varied (Burkhauser, 1998; Stapleton et al., 1998). SSI AND DI IN THE CONTEXT OF FEDERAL SOCIAL SERVICE PROGRAMS An intricate web of social services and income support programs in the United States targets diverse groups, including people who are elderly, are poor, have disabilities, or are veterans. Benefits include income transfers, food stamps, health insurance, transportation, case management, vocational training, and support for housing and education. All of these programs are characterized by differing eligibility criteria, benefit levels, administering bodies, critical definitions (e.g., of disability), funding mechanisms, and application procedures. A person may be presumptively eligible for one program, due to his or her diagnosis, as in special education for students with mental retardation, but not eligible for other programs without participating in a lengthy and complex application procedure, as in SSI, Medicaid, and vocational rehabilitation. The complexity of this network of services and supports is heightened by the fact that some programs are funded and administered by the federal government, others by the states, others by

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits local authorities, and others jointly among different levels of government and variously administered. This dizzying array of possibilities contributes to a service system that is extraordinarily fragmented, making it difficult for citizens to navigate. People with disabilities, particularly mental retardation, experience great difficulty in enrolling in a program such as SSI. Considerable savvy (i.e., intellect, persistence, and ability to understand nuances) must be brought to bear to ensure that a person with disabilities gets all the services and supports to which he or she is entitled or requires to be productive. People with mental retardation face an immediate barrier in the form of demonstrating eligibility, a barrier that may be insurmountable without an advocate to pursue access to benefits for them. People with mild mental retardation whose disability is generally less visible, are less likely than people with more severe mental retardation to have an advocate to assist them in the application process. To assess the impact that other federal programs can have on the SSI and DI programs, it is important to understand the ways programs interrelate. Researchers have recognized that some programs are complementary, while others are substitutes for one another. For example, Medicaid was considered to be complementary to the now defunct AFDC; the expansion in Medicaid benefits led to concomitant increases in AFDC participation. Researchers have also found that public health insurance is probably a substitute for private health insurance. When eligibility for Medicaid was expanded to cover children and pregnant women in the late 1980s and early 1990s, there was a corresponding reduction in private health insurance coverage (Garrett & Glied, 2000). Given the complex interrelationships among federal programs for people with disabilities, it is useful to assess how programs interact with respect to people with mental retardation. In an evaluation of the impact of state generosity in providing AFDC benefits on child SSI participation, Garrett and Glied (2000) found that following the U.S. Supreme Court’s Zebley decision, SSI participation by children in-

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits creased more in states with lower AFDC benefits. This occurred because SSI payments are generally higher than AFDC payments, and AFDC’s earned income rules were more stringent than those for SSI. After the Zebley ruling, families were more likely to seek SSI and Medicaid for their children with disabilities. The welfare reform legislation of 1996 was expected to precipitate a fall in the SSI rolls due to the tightening of eligibility criteria for children with disabilities. In 1997, the eligibility of hundreds of thousands of child SSI recipients was reevaluated by SSA, and 90,000 children were removed from the program (Kubik, 2000). Similarly, cost containment processes have become a hallmark of private insurance companies, which are increasingly requiring SSI determination of disability before accepting the adult child of a policyholder as an adult dependent with a lifelong health condition (Hemingson, 1998; United Health, personal communication, 1998). For insurance companies, this practice eliminates many prospective insurees who have long-term health needs because of the long and difficult process it takes to work with two major, unconnected systems. Because of the length of the SSI determination process, some insurance companies save the costs of other prospective insurees with long-term health care needs by delaying their obligation for one, two, or even three years. SSI and DI eligibility determination can take a full year or more and extend even longer if appeals are necessary. This is an extraordinary burden for poor families and prospective beneficiaries who need health care. Research has also assessed the extent to which Medicaid has been an incentive for families to continue to receive AFDC benefits. Yelowitz (1998) found that when Medicaid eligibility was expanded to include greater numbers of poor children, their parents were more likely to enter the workforce and discontinue participation in AFDC. This finding is important because it points to the potential for savings in welfare expenditures when Medicaid eligibility is expanded. Families with a child with a disability may also be able to eliminate their SSI use if Medicaid coverage could be continued. As observed by the National Commission on Childhood Disability in compiling its report

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits to Congress, many families commented that the need to purchase health- and therapy-related items was a critical factor in their ongoing need for SSI (National Commission on Childhood Disability, 1995). Expansion of Medicaid eligibility is less likely to affect SSI enrollment among adults with mental retardation, however. In light of the very low competitive employment rates for adults with mental retardation, their access to private health insurance coverage is very limited. And given the reliance of state service systems on Medicaid reimbursement for community-based services for adults with mental retardation, strong incentives remain for enrollment of such adults in the SSI and, by extension, Medicaid programs. Analyses of the relationships between SSI applications and other federal support programs reviewed for the years 1988-1992 demonstrate that reduction in welfare benefits for the poor resulted in highly significant increases in SSI applications in seven states and the District of Columbia (Stapleton et al., 1998). Although analyses of the interactions between SSI and the recently enacted Temporary Assistance to Needy Families (TANF) program have not yet been conducted, one can speculate on the potential relationship. Given that there is a five-year maximum lifetime benefit period mandated for TANF beneficiaries, it is likely that former welfare recipients will have increased incentives to apply for SSI. While certainly not all mothers who live in poverty have mental retardation, essentially all mothers with mental retardation are poor (Keltner, 1992). Therefore, the relationship between public assistance and mental retardation is a significant one. There is evidence that a substantial share of the mothers who were on AFDC have disabilities (Stapleton et al., 1998). And, because most mild mental retardation has an intergenerational nature associated with varied deprivations (diet, cognitive stimulation, substance abuse), many women and their children who are approaching the term limit for TANF may have mental retardation. The intergenerational nature of mild mental retardation may significantly complicate SSI determination, when both mother and child have mental retardation. The

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits SSA application process may be a formidable one for applicants with a cognitive disability. Women with mental retardation constitute a significant proportion of individuals who have been supported by welfare programs (Stapleton et al., 1998). Because of their lifelong disability, work opportunity or vocational training for women with mental retardation may have limited success, unless it is responsive to the special training needs associated with their disability. People with mild mental retardation can certainly be employed. However, women who are also parents (usually alone) and must provide health care for dependents will struggle to fulfill their vocational potential in this context without the proper supports—supports that have not been included in the TANF program. And maximum enrollment in TANF expires in most states between August 2001 and August 2002. The structure of the nation’s economy has fundamentally changed over the last few decades, and the impact on people with disabilities has been significant. A rise in service businesses, as well as an increase in skilled work that is computer-reliant has accompanied the decline of the nation’s manufacturing jobs. Although technological advances have offered new opportunities to skilled workers with physical disabilities, outcomes for people with cognitive disabilities like mental retardation have been less auspicious, given new emphasis on higher levels of education, flexibility, speed, and intellect (Krueger, 1997; Mashaw & Reno, 1996). The economic outlook for people with disabilities, particularly cognitive ones, is bleak. That is, there is good evidence that, in spite of the Americans with Disabilities Act of 1990, they did not benefit in large scale from the economic boom of the 1990s. As noted by Burkhauser et al. (2001, p.294): We find that while economic expansion since 1992 has improved the economic well-being of most working age people, the gains have been much smaller for working age people with disabilities than for the rest of the working age population. Furthermore, although the gains through 1998 have returned the average person with a disability to his or her level of economic well-being in the peak year of the 1980s business cycle, the income of a large fraction of the population with disabilities in 1998

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits remained well below that of their 1989 counterparts in absolute and relative terms. Finally, we find that despite a robust economic expansion, men and women with disabilities became less involved in the labor market and more dependent on public income transfers during the 1990s. This situation has not yet been examined systematically to determine whether it is a consequence of the labor market requiring workers with better cognitive skills or whether potential workers with mental retardation did not seek employment for fear of losing their only available health insurance: Medicaid. Indeed, considering the significant policy and societal impact of the context for persons with mild mental retardation who are affected by these changes, there is a surprising lack of research and empirical resources to describe these phenomena. IMPORTANCE OF SSI AND DI BENEFITS IN SERVICE DELIVERY SYSTEMS Gateway to Other Services SSI and DI benefits serve as a critical gateway to a number of other federal and state services. Recipients are able to get health care coverage and income maintenance benefits. Recipients are also able to get vocational training and other kinds of employment assistance. Here we briefly review some of these benefits that come with SSI and DI. In the United States, eligibility for public health insurance for people with disabilities is predicated on eligibility for income transfer programs—essentially on poverty status. In 32 states, eligibility for SSI automatically qualifies an individual for Medicaid. Seven other states use SSI eligibility to establish Medicaid eligibility, but they require a separate application. In the remaining 11 states, Medicaid eligibility requirements include criteria that are more restrictive than those of the SSI program. Recipients in those states do not automatically qualify for Medicaid when they qualify for SSI. Everyone who

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits receives DI is eligible for Medicare, although there is a two-year wait before Medicare coverage begins (Social Security Administration, 1999). And 34 states supplement federal SSI benefits with cash assistance ranging from $10 to over $250 per month for an individual living independently (State Assistance Programs for SSI Recipients January, 2000; online at http://www.ssa.gov/statistics/ssi_sap/2000/). States that supplement SSI benefits have a significantly higher rate of SSI applications, a finding that is robust over the period between 1980 and 1993 (Stapleton et al., 1998). Current federal policy permits states to offer some home and community services as part of Medicaid state plan benefits through the Home and Community Based Services waiver program. The program does not fund costs for housing. Thus, federal SSI payments and state supplements have become increasingly critical sources of funding for community services, especially housing costs. Braddock et al. (2000) report that in 1998, federal SSI payments of $1.3 billion represented 7 percent of the nation’s total publicly financed community services revenues for people with mental retardation or developmental disabilities. SSI income is considered by lenders to be a more stable source of income for purposes of purchasing a home than income from most of the jobs that people with mental retardation can hold. When accounting for the fact that these jobs also typically do not provide benefits such as health insurance, SSI becomes, again, a gateway for basic security separate from its income maintenance purpose. Some of the services currently provided for people with mental retardation or developmental disabilities in the United States include housing, case management, employment, personal assistance, transportation, family support, and vocational training. In 1998, spending for this specialized service system totaled $25.6 billion, with Medicaid representing the largest single source of funding. Combined federal, state, and local Medicaid resources totaled $19 billion, comprising 74 percent of spending on people with mental retardation or developmental disabilities in 1998 (Braddock et al., 2000). In 1998, the estimated population of people with mental retardation in the United States was about 2.35 million (Larson et al., 2000).

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits have access to the support systems they need to obtain and maintain employment. Although educational services are improving, the extent to which employment-related provisions of the IDEA have been implemented varies substantially among local educational agencies and among the states. Furthermore, failure to implement appropriate transition planning and to carry out transition strategies is one of the most frequently cited areas of noncompliance identified by federal monitors of IDEA compliance (National Council on Disability, 1996). The availability of vocational rehabilitation services for people with mental retardation is relatively low in relationship to the overall number of people in need. Vocational rehabilitation departments exist in every state, and they spend joint federal-state funds to provide an array of employment and training services to people with disabilities. Vocational rehabilitation use and impact are not widespread for people with disabilities who receive SSI or DI benefits. In 1993, 300,000 of the 7 million SSI and DI beneficiaries (or 4.3 percent of beneficiaries) were referred for vocational rehabilitation and 6,000 (or 2.0 percent of referrals) were rehabilitated (U.S. General Accounting Office, 1995). In an assessment of the reasons underpinning the return to work of DI beneficiaries, vocational rehabilitation services and the SSA programs were not found to be significant factors (U.S. House of Representatives, Committee on Ways and Means, Subcommittee on Social Security, 1998). The U.S. General Accounting Office (1997) has found that states’ disability determination service offices refer an average of only 8 percent of DI and SSI beneficiaries for vocational rehabilitation services. In 1997, a total of 58,358 people with mental retardation exited states’ vocational rehabilitation systems, and 27,836 or 48 percent of them did so with employment outcomes (Teimouri, personal correspondence, 2000). Employment outcomes include enclave or mobile crew positions and various forms of supported work and do not necessarily entail competitive employment. Thus, the number of people with mental retardation who receive vocational rehabilitation services is very small in relation to the total population of such people. In addition, state mental retardation agencies vary considerably in

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits their ability to provide supportive employment, and the extent to which responsibility for supported work is vested in these agencies rather than the vocational rehabilitation sector differs among states. As of 1996, only 23 percent of the lead state agencies for mental retardation services funded integrated employment (Mank, 2001). Community rehabilitation agencies, the most common providers of vocational supports for people with mental retardation, vary significantly in their ability to provide employment support. Many continue to concentrate their resources on nonintegrated and center-based programs, such as sheltered work, few of which pay their clients gainful wages (Mank, 2001). Fifth, SSI and DI are critical income maintenance programs for people with mental retardation and often serve as an important gateway program for other services. Given their high unemployment rates and their overall marginalized status in society (Edgerton, 1993), people with mental retardation are highly dependent on SSI and DI to assist them in meeting basic needs. Furthermore, SSI beneficiary status usually confers Medicaid eligibility and in some states access to housing, subsidies, and other support programs. As such, SSI is a major component of the supports that can be utilized by people with mental retardation and that enables them to live in their home communities. In addition, for a relatively small number of people with mental retardation, it provides job supports that enable people to work by participating in work incentive programs. Sixth, people with mental retardation want to work but are cautious about the loss of benefits that can accompany unemployment. Most available evidence clearly shows that people with mental retardation want to work and given the appropriate supports will work (Mank, 2001). At the same time, it is equally clear that supported work, which is one programmatic gateway to gainful employment, typically does not provide sufficient income to pay for minimal living expenses. This is particularly so in urban areas, where the cost of living, and housing in particular, may greatly exceed the resources provided by minimum or low-income wages. To the extent that supported work services are

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits available and can provide a stepping-stone to employment above minimum wage, with adequate and typical fringe benefits such as health insurance, these programs can defray the need for receipt of SSI benefits. However, the impact of supported work in garnering these types of jobs for people with mental retardation has not been fully ascertained. Even when such jobs are obtained, new hires with mental retardation, lacking seniority, will remain vulnerable to layoffs associated with fluctuations in the national and local economies and changes in the labor market. Advocates have argued that the barriers confronting people with mental retardation and other developmental disabilities in obtaining meaningful work are considerable and require particularly careful policy approaches. As individuals who often live and work at society’s margins and whose earned income is frequently not substantial enough to raise them out of poverty, people with mental retardation and their allies must be cautious about the loss of benefits that can accompany employment. The Illinois Planning Council on Development Disabilities (IPCDD) stated: The realistic fear of loss of eligibility for Supplemental Security Income (SSI) and Social Security Disability Insurance (DI) is a major barrier which prevents many individuals with developmental disabilities from becoming employed. The policy of the IPCDD is that people with developmental disabilities must have the opportunity to be productively employed and earn real wages without jeopardizing their eligibility for programs and services. Specifically, for those wage earners with developmental disabilities who require support services, the monetary value of such support services should not be counted as part of the individual’s income when determining eligibility for services and benefits, and the maximum allowable income for services and benefit eligibility should be sufficiently high so as to reflect the increased cost of living borne by people who require support services and/or adaptive equipment and supplies (Illinois Planning Council on Developmental Disabilities, 1991, p. 19).

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits Return to Work The likelihood that people with mental retardation can support themselves by working has also been enhanced by the efforts of activists to secure antidiscrimination legislation in employment settings, which culminated in the 1990 passage of the Americans with Disabilities Act (Ticket to Work and Work Incentives Improvement Act of 1999). Public support for greater employment of people with disabilities has included a focus on the growth in the DI program, in which beneficiaries increased by 53% (Social Security Administration, 2001a) and the SSI program, in which beneficiaries more than doubled during the same period (Social Security Administration, 2001a). Advocates with disabilities and fiscal conservatives alike have shared an interest in increasing opportunities for people with disabilities to obtain employment. SSA (Social Security Administration, 1999) reports that less than half of one percent (0.5 percent) of DI beneficiaries return to work, and about 1 percent of SSI beneficiaries return to work, in spite of many indications that beneficiaries want to work. SSA further states that returning recipients to the workforce is one of its chief priorities, while acknowledging little success in this regard (Social Security Administration, 2000, 2002). Employment Barriers for People with Disabilities Barriers to work for people with disabilities include difficulty determining who can work, SSI and DI program components that impede return to work, and relatively low priority given by SSA to initiatives targeting employment acquisition (U.S. General Accounting Office, 1996). The General Accounting Office has suggested that the nature of the disability determination process itself, which necessitates that claimants prove that they cannot work, is incompatible with, or impedes development of, return-to-work goals and implementation strategies to achieve these goals (U.S. General Accounting Office, 1996, 1997). It is widely held that the current structure of both the SSI and DI programs impedes return to work, because their design and

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits implementation actually obstruct the identification and enhancement of the productive capacities of beneficiaries who may profit from employment assistance (Petersen & Bascetta, 1999). In addition, economists argue that the structure of the DI program, in particular, includes extensive and effective work disincentives (Hoynes & Moffitt, 1999). Basing disability determination decisions on the presence or absence of an impairment contained in the SSI Listing of Impairments (Social Security Administration, 2002) is problematic, in that it categorically presumes that certain disabling conditions automatically preclude the ability to work, or at least substantively impair work performance in the absence of special vocational preparation or work supports. Researchers agree that medical diagnoses are inadequate predictors of the ability to work (Fox, 1994; Mor, 1998; Petersen & Bascetta, 1999). Incentives are therefore built into the system for claimants to overstate their disabilities and understate their work abilities, because the stakes are all or nothing (Petersen & Bascetta, 1999). In the United States, most people receive their health insurance coverage through their employment. This relationship is important to understanding a key barrier to work for people with disabilities. The National Academy of Social Insurance has identified three critical issues in the linkage between work and health care that impede employment for people with disabilities. First, employers may be reluctant to hire people with disabilities due to fears of increasing health premiums. Second, work is not economically feasible for people with disabilities who cannot obtain health insurance on the open market. Third, gaps in private health care coverage, including both managed care and fee-for-service plans, can be significant for people with disabilities (Mashaw & Reno, 1996). Between 1988 and 1992, the number of people without health insurance increased by 5 million. During this same period, employer-sponsored health insurance increasingly limited coverage for chronic conditions (Daniels & West, 1998). Not long ago, a nationally representative panel of over 1,200 disability leaders identified concern about the loss of Medicare or Medicaid as the

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits greatest barrier to employment for people with disabilities (President’s Committee on Employment of People with Disabilities, 1994). As a result of the powerful link between health care and employment, the National Academy of Social Insurance has recommended expansion of Medicare and Medicaid to allow poor working people with disabilities to buy into the programs, thus eliminating loss of health care as a disincentive to work. The National Academy of Social Insurance’s assessment of the relationship between DI and SSI benefits, employment, and health care is telling: The [Disability] panel’s basic finding is that the Social Security and SSI disability benefit programs do not pose strong incentives for Americans with disabilities to seek benefits in lieu of working. Rather, the strict and frugal design of these programs makes remaining at work preferable to benefits for those who are able to work. . . . While neither DI nor SSI cash benefits pose strong incentives for Americans to seek these benefits in lieu of working, constraints on access to health care and related services can (Mashaw & Reno, 1996, pp. 24). Ticket to Work Legislation The most recent legislative attempt to address employment issues for people with disabilities was passage of the Ticket to Work and Work Incentives Improvement Act (1999), which became effective in January 2001. The Ticket to Work Act contains two major sets of provisions that address barriers to employment. Under Title I of the act, people with disabilities can receive a ticket that enables them to obtain employment services such as vocational training or job placement services from vendors that may be state agencies, nonprofit organizations, or private providers. This portion of the act also contains provisions that reward providers for better employment outcomes by paying enhanced rates. The second title of the act is intended to remove barriers that force people with disabilities to choose between work and health care. States are given the option of providing Medicaid coverage to people with disabilities ages 16-64 who are working. States can opt to allow working individuals with disabilities whose incomes are at or above 250

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits percent of the poverty level to buy Medicaid coverage. This title of the act also creates a new Medicaid buy-in demonstration project funded at $250 million for fiscal years 2001-2006 and offers $150 million in federal funding for improvements to the Medicaid infrastructure. Importantly, Section 112 of the law also provides for expedited reinstatement of SSI, DI, Medicaid, and Medicare benefits for many people if their benefits ended because they became employed but are again unable to work within 5 years and they still have the same condition. The SSA supported passage of the Ticket to Work Act and estimated that 40,000 people with disabilities would leave the disability rolls as a result of the law during the first 10 years (Donkar, 2000). The act has the potential to significantly reduce SSI and DI expenditures, because it will also reduce an identified barrier to workforce participation (U.S. House of Representatives, Committee on Ways and Means, Subcommittee on Social Security, 1998). In addition, SSA increased the level at which an individual’s income is considered to be “substantial gainful activity” from $500 monthly in 1998 to $740 monthly in 2001 with annual increases scheduled (Social Security Administration, 1999, 2000). Advocates with disabilities have also hailed the new legislation as the first major attempt by Congress to address some of the serious barriers to employment that confront people with disabilities. Advocates have also expressed concerns that since many of the law’s new provisions are optional, states will need incentives or have to be pressured to adopt the new programs. Provisions in the Ticket to Work Act that expand eligibility for Medicaid to workers with disabilities are likely to discourage growth in DI and SSI because they address the health care-employment linkage that encourages people with disabilities to maintain their SSI or DI status in order to retain health insurance benefits (Mashaw & Reno, 1996). Given the high costs of supporting people with disabilities through the DI and SSI programs, there has been increasing interest in strategies and programs that return people with disabilities to work, and the economic trends of the 1990s seemed to support these initiatives. A

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits strong economy and a tight labor market create incentives for employers to work to retain their employees (Travarozzi, 2000) and to hire from traditionally underrepresented groups, including people with disabilities. As mentioned earlier, in spite of the economic boom of the 1990s, however, people with disabilities have not realized major advances in their employment rates (Burkhauser et al., 2001); the reasons for this are not well understood. Research has discounted the notion of returning to work as a static event ending a period of work-related disability (Baldwin & Johnson, 1998). However, return-to-work initiatives in the SSI, DI, and vocational rehabilitation programs are not equipped to address the changing nature and needs of people with disabilities. For many people with mental retardation, however, the Ticket to Work Act may offer opportunities to maintain their health care coverage and enter the workforce for the first time. Although the Americans with Disabilities Act prohibits discrimination in the workplace, the burden of proving discrimination is on the wronged employee. Seeking remedies requires substantial emotional, cognitive, and often financial resources, which are likely to be particularly difficult for people with mental retardation to muster. These considerations may make the promise of the Ticket to Work Act less fruitful for people with mental retardation than for those with other disabilities. CONCLUSIONS AND RECOMMENDATIONS The committee’s review of the scientific and policy literature leads us to make the following conclusions: First, gainful employability of people with mental retardation is heavily dependent on variables that are external to the individual. Furthermore, the conditions that allow people with mental retardation to be employed often go unmet. Unlike certain other disabilities, for which the provision of short-term interventions such as vocational re-

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits habilitation can result in long-term gains in employment skills, from an employment perspective mental retardation is a lifelong disability. Although employment is often possible and desirable, the supports, services, and networks needed by this population in order to be continuously employed are significantly underdeveloped. The lack of SSI benefits is likely to leave vulnerable individuals without critical supports. Second, given their dependence on external supports and their vulnerability to changes in the work environment, it should be made easier for people with mental retardation to quickly resume receipt of benefits throughout their lives when they become unemployed, even beyond the provisions of the Ticket to Work Act. The knowledge that eligibility can be reestablished easily may encourage those already receiving benefits to seek employment. There is evidence that some, who might otherwise work, continue to receive benefits instead, because they fear for their future security should they lose their jobs. Third, the earned income of gainfully employed persons with mental retardation is extremely low, and this population is highly vulnerable to unemployment in economically depressed periods. SSA has developed a variety of work incentive programs to aid recipients in their return to work. Although these services hold great promise and provide supports that are consistent with the vocational assistance needs and aspirations of people with mental retardation, they are not frequently utilized. Low utilization rates may reflect fears about a loss of critical income support and health care coverage. Counterbalanced against this realistic fear is the desire of many people with mild mental retardation to be gainfully employed, tax-paying members of society. A critical step in resolving this tension is the provision of effective support services that assist individuals to maintain employment and the provision of flexibly administered benefits that provide ongoing and predictable income and health care coverage. Given individual needs for supports and services, work incentive programs pose great potential to improve the gainful employability of people with mental retardation. However, these programs should not be time-limited be-

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits cause of the enduring nature of mental retardation and its impact on the individual’s ability to work. Fourth, benefits provided by Medicaid programs are more generous than those typically available in privately purchased health care plans. And people with mental retardation who are gainfully employed may work in settings that do not provide employer-based health insurance or they may require employee contributions that are prohibitively costly for low-wage workers. Fear of losing health care coverage dampens the willingness of many people with mental retardation to seek gainful employment. Extending Medicaid coverage to them regardless of their eligibility for SSI benefits would provide greater incentive for these individuals to seek employment. Fifth, given the importance of SSI and DI benefits in the lives of adults with mental retardation, efforts should be made by school personnel to refer individuals to secure eligibility determination prior to adulthood. Many school systems do not use the label “mental retardation” because of its social stigma. Thus, reliance on diagnostic labels associated with the provision of special education will be insufficient to identify potentially eligible children. Although many with mental retardation qualify for benefits as children, others whose families do not meet income guidelines do not. Eligibility data show that many people with mental retardation do not establish SSI eligibility until well into their twenties or even later. This kind of planning should be part of transition planning for all youth with mental retardation. The Social Security Administration and the Department of Education could sponsor joint initiatives at the federal and state levels to promote timely determinations and information dissemination to teachers and school administrators. Based on our review of the literature and the conclusions listed above, the committee makes the following recommendations concerning the context of the SSA disability benefit programs. Recommendation: The Social Security Administration should remove disincentives for people with mental retardation to seek employment by:

OCR for page 38
Mental Retardation: Determining Eligibility for Social Security Benefits Considering individuals with mental retardation to be presumptively reeligible for benefits throughout their lives, if they have previously received benefits, subsequently secured gainful employment, and then lost that employment. Encouraging the use of work incentive programs for people with mental retardation, with appropriate and necessary protections of each program’s role as a safety net for income support. Permitting individuals with mental retardation to retain eligibility for Medicaid independent of their employment status.