Continued Employability of Older Adults with Mental Retardation

Harvey L. Sterns, Ph.D.;Elizabeth A. Kennedy, Ph.D.

Statement of Problem and Background
Conceptual/Theoretical Model
Research Questions or Hypotheses
Progress to Date

Statement of Problem and Background

In 1991, approximately 756,000 adults with mental retardation (MR) were involved in either employment or work alternative programming services in the U.S. (McGaughey, Kiernan, McNally, & Gilmore, 1995). Thirty percent of these adults worked in some type of supported employment situation, 45% worked in sheltered workshop environments, and 25% received non?work/alternative programming services. A variety of studies examining work experiences of individuals with MR documented a similar if not stronger importance attached to work for individuals with MR as is found in the general working population (e.g., Coker, 1997; Kregel & Wehman, 1996; Sinnott-Oswald, Gliner, & Spencer, 1990; Wadsworth, Harper, & McLeran, 1995). Research has indicated that maximizing employment experiences and opportunities among adult and older adult workers with MR results in individuals who are in greater control of and more satisfied with their own lives (e.g., Decker & Thornton, 1995; Kregel & Wehman, 1996).

The field of industrial gerontology has examined the optimization of work experiences and options and transitions to retirement for adult and older adult workers (e.g., Sterns & Camp, 1998; Sterns & Doverspike, 1989; Sterns & McDaniel, 1994). However, very little research has been conducted regarding the work experiences of older adults with MR, in such areas as job satisfaction, employer/employee attitudes, skill assessment, goal setting, career development, or pre-work cessation education and planning. Information is needed in two areas. First, reliable descriptive data is needed regarding employability and employment barriers as experienced by adults with MR in both competitive and supportive employment. We are defining employability as the state of being employable - that is, having the skills and capacities to maintain employment.

We are defining employment as the state of being employed. Second, we need to gather the day-to-day job placement and employment advocacy experiences of specialists in vocational centers that are attempting to outplace their workers. Such data will help us further identify barriers to employability. We've included this second area, because we recognize that a significant number of older adult workers with MR still work in a sheltered situation (Mank & Kiernan, 1994). Researchers have noted that, despite the success of supported employment (Kregel & Wehman, 1996; Shuster, 1990; Wehman, Brooke, Inge, & Green, 1997), conversion from segregated workshops to integrated employment services has been slow and difficult (Kregel & Wehman, 1996; Mank, 1994; Mank & Kiernan, 1994). This slow rate of conversion may be related to the employability issues. The primary goal of this project is to examine a range of employment retention practices and worker benefit programs that can aid older adults with MR maintain their employability and gain from worker's earned benefits.
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Conceptual/Theoretical Model

Models of employment for adults with MR.

Research Questions or Hypotheses

The objectives for this research study include:
1) determination of employability and employment practices nationally
2) identification of barriers to continued employability and employment
3) identification of occupational situation patterns
4) development of best practices employability guidelines for employment service personnel
5) development of a consumer?oriented employability and employment training pack which addresses workplace and personal accommodations (including employment rights, responsibilities, and options)
6) identification of pensioning systems and practices and recommendations for a transportable pension rights system.

The questions being addressed by this research study include:
1. How to identify cognitive and physical decline that may impair employability or continued employment?
2. How to identify means to provide compensations for decline and augmentations in workplace designs to enhance continued employability and employment?
3. How to develop old age pension schemes that ensure that workers with MR benefit from a lifetime of employment when they retire?
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This project is descriptive. Rather than testing specific hypotheses, this project seeks to understand the current employability and employment experiences of adults and older adults with MR.

Progress to Date

The focus of this grant was on employment of adults and older adults with MR and the development of a national survey on work-related issues, along with the development of curriculum. There was some overlap in the completion of our work on the death and dying curriculum and its final publication, which was in place during the first year of the new grant.
The research plan has been revised several times to reflect the increased understanding of issues that has emerged in this area. Our initial approach was to carry out an extensive literature review in the area of work and aging for individuals with MR/DD. This led to a position paper. The next step was to carry out in-depth interviews with key personnel in Ohio regarding how sheltered, supported, and community employment was presently being implemented in their Board of Mental Retardation. The issues and content of these in-depth interviews were reviewed by our advisors. The results of these interviews were used to determine key issues to be addressed in the national survey.

Year 1 (October 1998 to September 1999)

During Year 1, we carried out an extensive literature review on work, employment, and retirement issues for persons with MR/DD. The objective was to develop an understanding of key issues and to develop key areas for survey research. Part of this literature review was used to develop a chapter on Later-Life Planning and Retirement. This publication is:

Sterns, H. L., Kennedy, E. A., Sed, C. M., Heller, T. (2000). Later-life planning and retirement in M. P. Janicki & E. F. Ansello (Eds.), Community supports for aging adults with lifelong disabilities (pp. 179-191). Baltimore, MD: Paul H. Brooks Publishing Co.

Year 2 (October 1999 to September 2000)

In Year 2, our work on the literature review on work and adults and older adults with MR continued. A major activity by our Graduate Research Assistant, Diane Sotnak, was the development of a formal position paper on aging and work issues for people with MR. This paper was submitted to the Clearinghouse to be used as a resource document.

Another major activity during year two was in depth interviews with service providers at representative centers in Ohio. These interviews included key personnel involved in worker assignment and in setting work goals for older adult workers with MR. Important information was obtained on assessment approaches, work assignments, job coaching approaches, possible work settings, accommodations used and assistive technology, and issues of community employment, as well as retirement options. These interviews provided the information to develop national survey questions.

During this year, the curriculum on death and dying was published and received a very strong response as indicated by sales. Translations have now been made of the curriculum into German, Dutch, Hebrew and Japanese.

Year 3 (October 2000 to September 2001)

During Year 3, the final version of the national survey was approved by our technical advisory group Alan Factor, Matthew Janicki, and Sharon Davis. Care was taken to address the aims and hypotheses of the original proposal.

Work began on developing a surveying strategy, which would capture an expanded picture of the employment situation for adults with MR in this country beyond prior characterizations obtained using pre-established lists and samples. After much deliberation and discussion with colleagues, the ten top states and ten bottom states in terms of allocation of federal funds for supported employment were chosen. This approach was supported by our technical advisory group.

A questionnaire developed by Sulton, Sterns and Schwarts (1991) was distributed to superintendents and adult service directors of Ohio County Boards. Data from 47 counties indicated that adults 55 and older continued to work and most continued to be employed full time.

Year 4 (October 2001 - September 2002)

Based on the Top 10/Bottom 10 sampling strategy previously described, 20 state governments were contacted and asked to provide a list of at least three agencies within their state which would best represent the current employment situation for adults with MR. Multiple methods of contact were utilized including phone, fax, and visiting states' web pages. Despite the apparent ease of such a request, the researchers found this a tedious and time-consuming process. Rarely was a single contact and/or request for information sufficient. In the majority of cases, it took, on average, approximately 3 - 5 attempts to find either the correct department and/or the correct person within a state who could make or was willing to make an appropriate nomination. Early into the process of contacting the state governments, it became clear that all aspects of employment services available to individuals with MR varied greatly from state-to-state. Further, within any given state, it was frequently the case that governmental departments assigned to provide employment services to adults with MR often contracted this to other non-governmental agencies and did not have in depth knowledge about current employment practices within their state. Therefore, the researchers extended the time parameters for data collection on the national survey. At the close of the reporting period, we had data from 17 agencies after contacting over 150 agencies. They all received surveys by mail and/or fax. Hundreds of phone calls were made to agencies.

The research team (Drs. Sterns and Kennedy and Ms. Miller), accompanied by Advocate Advisor Susan Riemenschneider attended the RRTC Annual Meeting in Feb. 2002 in Chicago, Illinois. In addition to reporting on the status of the research project and sharing data obtained, the researchers conducted a focus group of Consumer Advocate Advisors to the RRTC. This group consisted of both individuals with MR and family members. These individuals shared their own or their loved-one's work experiences with the research team. All reported that there had been considerable progress made in employment opportunities for adults and older adults with MR. One consumer member talked of his experience working in a sheltered workshop on piece-work and then continued with a description of his current roles including work activity as well as serving on the National Advisory Board of the ARC.

Frustrations with losing jobs, having jobs "disappear," low wages, not being given opportunities to take on more responsibilities and/or not being able to advance within a job, and difficulties with co-workers were expressed. The importance of job coaches and the appropriate timing of fading their roles in the employment experience for the adult worker with MR was stressed. One parent expressed concern over a trend to reduce options for individuals who were lower functioning within the workplace. Specifically, this parent worried that closing sheltered workshops would limit employment opportunities for those individuals with profound and severe levels of MR. Participants were also asked what each would like to see in an employment curriculum for adults with MR. Many mentioned greater exposure to job options; gaining knowledge about various employment options was something many felt was very much needed. This information was gathered for use during curriculum development.

The curriculum development has continued right up to the end of the reporting period. Development of the curriculum has been slowed due to the difficulty of obtaining data from the national survey.

IRB approval will be obtained once the curriculum is finished. Focus groups will be organized to evaluate the curriculum. Delivery and refinement of the curriculum will begin this summer and continue into the Fall.

Dr. Sterns, wanting to highlight the work of the RRTC , has organized a symposium: Aging - The Challenge of Developmental Disability. This symposium is co-sponsored by Division 20 Adult Development and Aging and Division 33 Mental Retardation and Developmental Disabilities and will be held during the APA 2002 Conference in Chicago.

Year 5 (October 2002 - September 2003)

The major activities planned for year five will be to update the Person-Centered Planning for Later Life: A Curriculum for Adults with Mental Retardation (1993), to incorporate the death and dying module, to complete the new work modules and include those as well, and to deliver and evaluate all modules. Currently, Kennedy & Sterns are producing a curriculum titled Person-centered planning for later life: Work and Employment.
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Key Findings and Potential Implications

The development of training curriculum for adults with MR/DD has been a unique contribution by our investigative group. The death and dying curriculum has been a often-purchased resource from the national Clearinghouse and has been translated into Dutch, German, Hebrew, and Japanese. This successful format has been incorporated into the latest curriculum on work and employment which we expect to be widely disseminated in the same fashion. The forth coming Kennedy and Sterns paper on death understanding among adults with MR is under development; publication is expected.

This project examining work issues has addressed RRTC priority 5 ("identify, develop, and evaluate accommodations that help maintain employment"). It extends with the intent of identifying barriers to continued employability that would benefit workers in the baby boom generation and before. We have confirmed with the national survey that current older workers only make up a fraction of the number of younger aged workers. We also have found that there are many agencies which are not providing services to adult and older adult workers with MR; only a few offer retirement planning and innovative retirement programs. Data are still being analyzed.

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