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[ITC][Institute for Human Development]
At any transition point in life, be it from school to work or from work to retirement, a person should carefully consider all options. Transitions can affect multiple aspects of one's life.
The decision to continue to work or to retire should be carefully weighed. It may have implications far beyond the immediate consequences of the choice. Retirement may mean the loss of the current residential setting, if alternative day activities cannot be found. Friendships and comradeship may be developed and maintained predominantly in the work setting. Any change here could mean a disruption in the individual's social support network. The following sections describe several aspects of the person's life that should be examined to identify how changes would affect the quality of life of the person with the disability.
Assessments with persons with a cognitive impairment are often difficult, especially if the person conducting the testing is not thoroughly familiar with the individual being tested. Assessment is a dynamic process and not merely one of answering questions on forms. Strategies for assessment should be individualized for each person.
Some characteristics have been routinely found in assessment with persons with mental retardation. Complex open-ended questions are often difficult for these individuals to answer, particularly if an abstract concept is involved. Poor communication skills also hinder an interview protocol. Even simple "yes/no" responses have inherent problems. Persons with mental retardation have a tendency to want to please testers and to acquiesce by responding "yes" to these types of questions. At a minimum, a combination of forced choice and simple open-ended questions should be asked.
The following are some strategies for interviewing persons with developmental disabilities:
There are several aspects of an individual's life that should be carefully examined before a decision about retirement is made.
This Fast Facts will examine each of these areas and provide some suggestions for retirement planning.
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The best place to assess the work capacity is on-the-job. The fit between the requirements of the job setting and the skills of the employee are important. Some individuals may have limited skills, but work at a job that only requires the skills they possess. Other more highly skilled individuals may have poor work habits in a setting that required consistent behavior.
Older persons with disabilities must successfully respond to the job-specific performance demands of the situation in which they are working, as well as to a number of social competence demands imposed by the employment setting, if they are to continue to be viewed as valued and contributing employees. As one approaches retirement age, certain age-related changes (e.g., reduced physical stamina, loss of visual acuity, increased risk of reduced mobility due to arthritis, increased risk of dementia in some disability populations) may make it increasingly challenging for many individuals to continue to meet even the minimally expected job-related demands and social/behavioral requirements of the work situation.
Gaylord-Ross & Browder (1991) have defined five characteristics of a functional assessment. Adapting these to conform to a work setting, the following characteristics are delineated.
Both the demands of the environment and the skills of the person should be assessed. The match between these two found through a discrepancy analysis, can provide key information as to the types of supports or interventions needed to assist the individual employed or retire. By modifying either the person (e.g., provide personal training) or the environment (e.g., assistive devices, task sequence), the individual can successfully maintain employment.
Choice for working or retirement is frequently hard, even for persons without disabilities. Often the older worker does not understand what retirement means. He or she has never been exposed to the opportunities that lay beyond their workshop setting. They may have a misconception about what retirement is.
There are several ways to enhance the individual's decision-making process.
These above strategies may help the person make up their mind on whether to retire or not.
For most persons with developmental disabilities, finances are not a significant barrier to retirement. Many have worked in sheltered workshops where the salary is exceedingly poor. They also may reside in state-funded residential settings and receive Social Security Disability funding. Thus, no formal assessment of fiscal impact is required.
On the other hand, some individuals may be competitively employed. The reduction in their take-home pay may affect the ability of the older person to live independently. A detailed analysis of how the change in income would affect the individual's lifestyle and an identification of options should be reviewed.
The presence of social supports has been associated with reduced stress, decreased physical problems and enhanced mental health.
Social support networks are pivotal in understanding the "quality of life" of a person with a disability. Even persons with severe mental retardation have, in individual cases, been noted for having intense, enduring friendships. The social support networks of persons with developmental disabilities, however, have been generally found to be narrow and limited, almost exclusively restricted to where they live and where they work. Interactions outside of these settings are generally of short duration and shallow. In a Missouri study, individuals who lived in congregate residential settings rarely knew the name of neighbors without disabilities or interacted beyond an occasional wave of acknowledgment when leaving for work or returning home.
An example follows:
Bill works at the ABS workshop and lives in the XYZ group home. His friends are Tom, who lives with him at the group home, and Suzie, his girlfriend. He and Suzie go to restaurants, movies, and other recreational activities. He feels close to Tom. He gets along with his roommate, Jack, but does not feel he is a "very good friend." His brother, Jim, has only rare contact with Bill.
Since these social relationships are found at work or in the residential setting, retirement might bring about a severance of social support. One way to assess these relationships is through a structured network. Inquiry into who is in the social support network and their role can elucidate the effect of retirement on the person's relationship with friends. Figure 1 demonstrates this.
Changes in his work with affect Bill's social network. If retirement is planned, special attention should focus on adaptations.
Those who retire will have more free time. They will be able to pursue activities that might not have been possible before.
One of the steps in developing a leisure or recreational program is identifying the activities the person would like to do. The person should be asked at the beginning of the assessment what activities they would like to do in their leisure time. This could pose some problems for persons with disabilities who may not have been exposed to choices from among a wide range of activities. For this reason, the booklet entitled 'what Do You Like To Do? A Selection Book of Activities" was developed. This book presents pictures of various activities. The person identifies, first, those activities they are currently performing and then rates how well they like to do the activity. Then, the person identifies those activities they would like to do.
The assessor compiles a list of activities the person is currently doing and what he or she wants to do. For each activity the individual rates the desired activity with the following code:
Needs training: This activity is new to the person and training would be required (e.g., wants to learn to crochet).
Needs opportunity: The person knows how to do the activity, but doesn't have the opportunity to perform (e.g., wants to play in a band, but none is available).
Needs some assistance: Training of 5 to 20 hours required.
Needs minimal assistance: Little training required, less than 5 hours (e.g., plays Monopoly and wants to learn Sorry).
No need for assistance:No need for assistance. Some case studies are given to illustrate this.
This can assist in developing a person-centered individualized program. Some hints for identifying appropriate preferred recreation opportunities are:
Over the past thirty years, de-institutionalized efforts have moved persons with developmental disabilities from state hospitals to community residences. Although the increased presence of persons with developmental disabilities in the community has been accomplished, real evidence of community participation and social integration has not. Community inclusion and full integration often remains a verbalized theory, but few proponents have actually accomplished the application of theory to practice.
Assessment of current community inclusion and the potential thereto should be a part of work and retirement planning. The purpose of this assessment is threefold:
One way of assessing community inclusion is a mapping of the community and where the person participates. The depth of this participation is probed through structured interviews. This individual community assessment will assist in identifying how the person is currently integrated into the community and where this integration could be enhanced. Before conducting this assessment, it is necessary to visit the neighborhood where the person lives to identify some key sites where the person could spend some community time (e.g. 7-11, McDonald's).
The assessment should also look at potential places where inclusion may occur. Where did the person indicate a preference for going? What stores or community places seemed open to an active participation with a person with a disability.
Once all the assessments are complete, the time comes to assist the individual in choosing if retirement is preferred or if the person wants to continue working. One graphic way to help make this decision is to look at the benefits and drawbacks to continuing work and the benefits and drawbacks to retiring.
Have the individual describe his/her perceptions. Discuss some of your findings with this person. At this point some type of person-centered planning should occur. One form successfully utilized with this older population is Personal Futures Planning.
Even if the person does not want to retire now, planning for that time should begin early.
Boswell Retardation Center Curriculum. Paul Cotten, Ph.D. and his colleagues have developed a curriculum for preparing older person with developmental disabilities for retirement. The curriculum was designed for persons over 55 years of age, but may be more appropriate for those who are aging prematurely (e.g., younger individuals with Down syndrome). Most of the lessons are written for individuals functioning with mild or moderate deficits in adaptive behavior, irrespective of intelligence scores. The training course is designed to last approximately six weeks with group training lasting two hours each twice a week. One additional four hour session per week consists of a field trip.
NIDDR Aging and Developmental Disabilities Curriculum.A second pre-retirement curriculum for use with older persons with developmental disabilities was developed by the National Institute on Disability and Rehabilitation Research funded consortium under the direction of the University of Akron. This curriculum is divided into six sections with 15 lessons.
WARP Curriculum. An assessment and planning curriculum was developed by the UMKC Institute for Human Development under funding from the National Institute on Disability and Rehabilitation Research. This curriculum describes physical changes in aging, work enhancement practices, retirement programs, and community membership participation. An assessment and program planning package are included.