Data from the 1994 and 1995 Disability Supplements of the National Health Interview Survey (NHIS) were used to estimate rates of utilization of vocational services and examine employment outcomes for adults with disabilities who have received vocational services. Those living outside the formal long-term care system, and who were self or proxy identified as having mental retardation, were compared with other adults with disabilities. Analyses suggest that compared to other working-age persons with disabilities, adults with mental retardation (a) have a different population profile, (b) receive different types of services, (c) experience similar levels of satisfaction, (d) have much lower rates of competitive employment, and (e) are much more likely to be employed in segregated work settings. Research and policy implications of findings are discussed.
The advent of vocational services, such as supported employment, funded through both the state–federal vocational rehabilitation system and state mental retardation and developmental disability programs, offers new opportunities for social and economic integration of adults who are considered to have mental retardation. However, the majority of vocational services continues to be provided in sheltered employment settings, and this quasi-institutional bias limits competitive employment opportunities for such individuals (Mank, 1994; McGaughey, Kiernan, McNally, Gilmore, & Keith, 1995).
Because research on vocational services utilization and employment outcomes has focused on current participants in specific state or federal programs (Butterworth, Gilmore, & Schalock, 1998; Kiernan & Schalock, 1997; McGaughey et al, 1995), it has been difficult to ascertain overall levels of service access and competitive employment among adults identified as having mental retardation. The Disability Supplements to the 1994 and 1995 National Health Interview Survey offered researchers the first population-based sample of adults with disabilities in the United States. We used these data to develop a national profile of all working-age adults (18 to 65) identified as having mental retardation, examined what proportion of the population received vocational services, which services they received, and what employment outcomes they experienced. It is important, however, to place these findings in an appropriate policy and programming context. In the remainder of this section, therefore, we provide a brief overview of the evolution of vocational services for adults identified as having mental retardation.
In the United States, disability services and public policies for adults with mental retardation have evolved erratically through three distinct stages. In the first stage, persons labeled with mental retardation and other developmental disabilities were generally isolated in their family's homes or in various public and private institutions. Community support services and employment opportunities for these persons were severely limited. Beginning in the late 1960s, there was a substantial increase in new federal funding for social services and widespread adaptation of new community programs for children and adults with developmental disabilities (Rubin & Roessler, 1995). This second stage of disability services and policy evolution also coincided with the deinstitutionalization and independent living movements. Special education services were dramatically expanded and mainstreamed, and previously institutionalized children and adults were gradually moved out of institutions and placed in group homes and other less restrictive residential settings.
During this second phase, the vocational rehabilitation system, which had historically served adults with late onset disabilities (primarily injuries on and off the work site) was now called upon to serve a large and growing population of adults with developmental disabilities. Sheltered workshops, which originally served veterans and individuals who were blind, were expanded to accommodate individuals with developmental disabilities. Day training centers were developed to prepare individuals for sheltered work, and day treatment provided structured programming to individuals deemed unable to work. According to Murphy and Rogan (1995), the number of persons served in these types of programs expanded five-fold between 1968 and 1976.
Although these new employment options were an obvious improvement over their institutional predecessors, they came under increasing criticism for their continuing segregation of adults with disabilities. Beginning in the early 1980s, a third stage of disability programs and policies was developed, which stressed integrated employment and independent living.
The federal vocational rehabilitation system was modified to expand eligibility for persons with significant disabilities. Amendments to the Rehabilitation Act in 1992 placed the burden of proof concerning feasibility of employment on the vocational rehabilitation agencies. Prior to this change, individuals with mental retardation were frequently disqualified for services based on rehabilitation counselors' perceptions of their vocational potential. This presumption of eligibility appears to have decreased the number of applicants rejected for vocational services (Butterworth et al., 1998).
Two other legislative developments are also relevant to competitive employment for individuals with mental retardation. The Americans With Disabilities Act of 1990 provided legal protections for adults with disabilities in the workforce or seeking to enter the workforce (Blanck, 1996). The Work Incentive Improvement Act of 1999 allowed SSI and SSDI recipients to retain health insurance benefits and some cash benefits subsequent to employment (Waxman, 2000).
The United States disability services system is clearly in transition, as new regulations and ideologies clash with established rehabilitation practices. The legislative and regulatory changes described here, which were intended to improve access to competitive and integrated employment for all adults with disabilities, seem to have met with only limited success for adults with mental retardation. Butterworth et al. (1998) observed that the number of individuals with mental retardation who are competitively employed has increased steadily through the 1990s, but the proportion remains quite low. Despite the introduction of supported employment programs, the number of people in segregated services has not changed significantly in the past decade (Kiernan, Gilmore, & Butterworth, 1997; Kregel & Wehman, 1997). By providing a nationally representative population profile of working age-adults with mental retardation, this study will provide a baseline to help judge current and future reform efforts.
Data Source—The Adult Disability Follow-Back Survey
The Adult Disability Follow-Back Survey (hereafter called the Follow-Back Survey) is a supplement to the National Health Interview Survey, a continuing probability examination of households representative of the civilian noninstitutionalized population of the United States (Adams & Benson, 1991; Massey, Moore, Parsons, & Tadros, 1989). Data were collected in two major phases: Phase 1, the Disability Supplement, was administered concurrently with the 1994 and 1995 National Health Interview Survey core survey to all household respondents, and Phase 2, the Follow-Back Survey, was administered 6 to 8 months later to household members identified as having disabilities in the core survey or supplement (National Center, 1998a, 1998b). Data from both the 1994 and 1995 Follow-Back Surveys were merged to derive a set of 16,728 respondents ages 18 to 65 who had disabilities.
Estimation and Testing Procedures
All data were weighted to be generalizable to the United States population. To address concerns regarding sampling error in complex surveys such as the National Health Interview Survey (LaPlante, 1991), SUDAAN software (Research Triangle, 1998) was used to calculate standard errors for all prevalence estimates. To assess the reliability of these estimates, we calculated relative standard errors and population estimates, with relative standard scores over 30% deemed statistically unreliable and flagged in the summary tables. Group comparisons employ the SUDDAN chi-square test, analogous to the Pearson chi-square test for nonsurvey data. Probability levels were based on the F statistic, using denominator degrees of freedom equal to the number of primary sampling units minus the number of strata (Shah, Barnewell, & Bieler, 1997).
Identifying Adults With Mental Retardation
Adults with mental retardation were identified by two sets of questions in Phase 1 of the National Health Interview Survey supplement: For one item the respondent was directly asked, “Do [you] have mental retardation?” For another set of items, adults with activity limitations (activities of daily living or instrumental activities of daily living) were asked to identify the condition or impairment causing their limitation. A total of 387 adults answered yes to the direct question or selected mental retardation as the cause of an activity limitation and were, therefore, identified as having mental retardation.
Specific Survey Items on Vocational Services and Employment
Section E of Phase 2 included questions about whether the respondents had ever received various vocational services. Eight of these were identified as core vocational services: on-the-job training, job placement, training in job-seeking skills, vocational or business school training, college or university training, personal adjustment training, sheltered workshop, and supported employment. A total of 2,467 working age adults with disabilities reported receiving one or more of these eight services, but only 7% of these were identified as having mental retardation.
Persons who received one or more vocational services were asked about the perceived benefits of those services. They were then queried about their current employment situation and asked to select 1 or more of 12 response options to the question “Which of the following describe your current job or other activities?”
Competitive employment (working at a regular job or business for at least minimum wage)
Working with a paid job coach
A work crew, which consists of people with disabilities working as a team to provide services such as janitorial or lawn care in the community
An enclave (i.e., working in a group with persons who have disabilities in a regular business)
Any other supported employment not listed above
A sheltered workshop (i.e., working for piece rate wages below minimum wage)
A work activity center that teaches independent living and work skills
A day activity center that teaches independent living, nonvocational or prevocational skills, where one does not work or get paid
A formal job training program, not yet mentioned
No structured activity
This is a fairly complex hierarchical response scheme, starting with competitive employment and ending with no structured activity. A number of respondents selected more than one description. To simplify these responses, we developed a set of four discrete employment outcomes:
Competitive employment (yes to the preceding Item 1)
Noncompetitive employment (no to Item 1; yes to Items 2, 3, 4, 5, 6, 7 and/or 10)
Nonvocational activity (no to Items 1, 2, 3, 4, 5, 6, 7, 10; yes to Items 8, 9 and/or 11)
No structured activity (no to Items 1 through 11, yes to 12)
Table 1 shows weighted estimates for four groups of working-age adults (18 to 65 years of age): (a) persons with mental retardation who received vocational services (weighted N = 278,000); (b) persons with mental retardation who have not received vocational services (weighted N = 400,000); (c) persons with other disabilities who received vocational services (weighted N = 4 million); and (d) persons with other disabilities who have not received vocational services (weighted N = 23 million).
In general, adults identified as having mental retardation were younger and had more severe disabilities than did those with other disabilities. They were much more likely to be unmarried and to live with their parents or siblings, more likely to be male, and more likely to be part of a racial minority. Adults with mental retardation had much lower levels of formal schooling. Note that there were exceptionally high rates of proxy response for adults with mental retardation relative to those with other disabilities (82% and 72%, respectively), which may account for the relatively high rates of “don't know” or “missing” responses on items such as years of schooling. Comparing the two groups with mental retardation, recipients of vocational services were younger and more likely to have had formal schooling than were those who had not received vocational services.
Table 2 details the vocational services received by the two groups, and this comparison of working-age recipients with and without mental retardation of vocational services will be the focus of all subsequent analyses. The most dramatic disparity was in sheltered workshop placements—nearly 60% of adults with mental retardation received this service compared to 5% of other recipients of vocational services. Adults with mental retardation were also much more likely to receive on-the-job training and supported employment services.
Most respondents felt that the services they received had helped them in one or more domains. Differences between the two groups in terms of reported satisfaction with vocational services were small, and only two were statistically significant: help getting a better job, weighted N = 39,000, χ2 = 8.8, p < .01, and improved ability to take care of yourself, weighted N = 128,000, χ2= 5.5, p < .05 (see Table 3). (Please note: SUDAAN does a special adjustment based on weighted estimates. Degrees of freedom are not reported separately. This is described in the Method section under Estimation and Testing Procedures.)
Table 4 shows that adults with mental retardation have much lower rates of competitive employment than do other recipients of vocational services and are far more likely to be in noncompetitive employment or nonvocational activities, such as sheltered workshops and day treatment centers (65% vs. 18%, respectively). Noncompetitive employment was the most typical outcome for recipients of vocational services with mental retardation (50%).
For one survey question respondents were asked to identify the calendar year in which they last received services; but, unfortunately, the item had a high rate of nonresponse. Nonetheless, a preliminary comparison was made between current and recent vocational rehabilitation recipients (0 to 3 years) and less recent vocational rehabilitation recipients (4 or more years), shown in Table 5. Given the instability of the estimates, firm conclusions cannot be drawn. However, it appears that recent and current recipients with mental retardation of vocational services are more likely to be employed, mostly in noncompetitive settings, and less likely to have no structured daily activity than are less recent recipients.
Working-age adults with mental retardation appear to form a distinct group of vocational service recipients. Compared to those with other disabilities, they are younger and have more disabilities, and they receive more services. They are less likely to be competitively employed and much more likely to work in sheltered workshops and other segregated settings. These findings confirm and extend previous research findings and have important implications for rehabilitation research and policy.
The small number of adults with mental retardation who are competitively employed coupled with the large number who are in noncompetitive employment confirms Kregel and Wehman's (1997) assertion that supported employment programs are supplementing rather than supplanting sheltered employment and other segregated day programs. McGaughey et al. (1995) concluded that in spite of new opportunities created through supported employment, segregated employment continues to play a key vocational role for the majority of adults with mental retardation and developmental disabilities. In this national sample, approximately 50% of adults with mental retardation who received vocational services (115,000) were placed in segregated employment settings.
Although competitive employment may not be the most desirable goal for all adults with severe cognitive disabilities, as Rubin and Roessler (1995) observed, segregation of people with disabilities has historically been done for the convenience and comfort of people without disabilities. Murphy and Rogan (1995) called sheltered workshops “one of the last bastions of therapeutic paternalism” (p. ix). Originally conceptualized as a stepping stone to employment, sheltered employment has become, and continues to be, an end in itself for many.
In recent years, the Rehabilitation Services Administration has made supported employment a priority (Mank, 1994). However, a pattern of noncompetitive, segregated employment for individuals with mental retardation persists. During this period of policy evolution, special efforts must be made to offer services such as supported employment to individuals who are currently being tracked into noncompetitive placements.
New legislative initiatives, such as the recent expansion of eligibility for supported employment services under the Medicaid Waiver are important because they will potentially lead to greater participation of individuals with mental retardation in the workforce. The 1998 Amendments to the Rehabilitation Act, which emphasize vocational services to those with the most significant disabilities, may also prove to be a positive policy change for individuals with mental retardation who seek vocational services. However, the bias that results in noncompetitive and segregated placements for the majority of adults with mental retardation may not be ameliorated by legislative changes alone. As noted by Mank (1994), McGaughey et al. (1995), and Kiernan and Schalock (1997), changes must also occur at the provider level if persons with mental retardation are to become an integral part of the social and economic fabric of our society. If policy reforms are effective, a survey similar to this one conducted in another 10 years should show considerably less disparity between adults with mental retardation and adults with other disabilities.