[ITC][Institute for Human Development]
Case management for persons with developmental disabilities has been conducted for several decades. Case management generally includes tasks such as casefind, assessment, individual program planning, and coordination and monitoring of services. This Fast Facts sheet focuses on the program planning aspect of case management.
Several principles should be clearly enunciated about this process. First, whenever possible the individual with the disability should be the primary determinant of what is in the Individual Habilitation Plan. Their choice of residential setting, vocational placement and leisure activities should be taken into account when developing the annual plan. Activities that will help achieve these goals should be written into the plan.
Secondly, the least restrictive environment should be a paramount goal. It is preferable to provide supports to maintain the individual in the environment than to move the person to a more restrictive environment.
Thirdly, programming should, to the extent possible, be in integrated settings. This community integration should be more than a physical presence. Informal relationships with persons who are not developmentally disabled should be fostered.
Finally, the person should be allowed to be as productive as possible. Productivity can mean a job with an adequate salary or the fruits of volunteer labor. For each individual, productivity can be defined in a diversity of ways.
When an individual with a disability ages, program planning should take into account age-related needs. That are a myriad of differences between younger and older persons. These should be reflected in program planning.
Age-related decrements occur in the human body -- from hearing, vision, musculo-skeletal system, to heart problems. Thus, it is essential that particular attention be paid to health issues. Evaluations of health should be conducted periodically.
There are number of health areas that should be addressed:
Vision: Vision changes as the person ages. At the age of 80 years, 90% of elderly have some form of visual impairment. Some illustrative changes include low visual acuity (not able to see clearly at a distance in low light); farsightedness (close visual field hard to read); low spectrum colors (e.g., blue, violet) hard to see; dryness of eyes. Some diseases are more common in older persons:
Hearing: Hearing loss begins in early adulthood and is more common in men. The loss of high frequency and low intensity sounds makes it more difficult to distinguish one word from another. Persons with Down syndrome may experience a more progressive, earlier hearing loss.
Cognitive Changes: Some cognitive decrements occur in almost all older persons, usually after the 8oth year. Reaction time is slowed; learning becomes a process that takes longer; short-term memory is not as clear as it used to be. These can be aggravated substantially by diseases more prominent in old age: strokes, heart attacks, and dementias. Alzheimer's disease is a syndrome characterized by a decline in mental capacities. Common signs and symptoms include personality changes (e.g., hostility, mood changes); memory problems, especially short-term; problems in acquiring new skills; and speech difficulties. Down syndrome appears to be related to Alzheimer's disease. Not all individuals with Down syndrome show clear signs of Alzheimer's disease.
Reproductive Changes: Menopause usually begins around 50 years of age. Many other changes can occur in the body as a result of this (e.g., osteoporosis, increased heart attacks).
Urinary Tract: Both men and women have more urinary tract problems in middle and old age. For women, incontinence is more prominent. For men, prostate diseases are more common (e.g., acute prostatitis; benign prostatic hypenrophy and prostate cancer).
Musculoskeletal System: Significant changes occur in the musculoskeletal system with age. The muscles decrease in bulk, bones show mineral loss, and joints lose lubricant and can show effects of wear. Arthritis and osteoporosis can incapacitate elderly persons. Persons with disabilities often have experienced difficulties at an early age (e.g., cerebral palsy). These can be exacerbated with old age.
Medications: Many older persons take multiple prescribed medications. Some of these produce interactions which result in adverse symptoms (e.g. dementia, depression, delirium). Others may interact to the detriment of the older person. A complete listing of the name of the drugs and dosage should be maintained. The physician should be updated wen these are changed.
Aids should be considered to improve the lives of older persons with developmental disabilities. A few of the many adaptations to improve the quality of life are listed on Table 2.
Good health habits become more important in older persons. These can affect the health status of the individual and their quality of life.
Nutrition: The dietary needs of the older person should be assessed, especially in light of certain physical problems (e.g. high blood pressure, diabetes, constipation). Attention to nutrition and diet can not only prolong life, but enhance a person's quality of life.
Exercise:A good exercise program can benefit all persons. This program could improve mobility, musculature and stamina.
Smoking and Alcohol: The person should be
encouraged not to smoke and to drink in moderation.
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VISION |
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HEARING |
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COGNITIVE |
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CARDIOVASCULAR |
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GASTRO-INTESTINAL |
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MUSCULOSKELETAL |
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Many individuals without disabilities "retire" from the daily grind of "work." Persons with disabilities may also feel that there are other opportunities that may be more rewarding than the toil at a sheltered workshop. Careful planning of the implications of "retiring" should be undertaken. Even the small amount of money typically earned by these individuals may have provided them with the 'niceties" of life -- cassettes, movie tickets, brand-name shoes. The person's identity may have been defined by their work role --'1 am the best sealer in the place." 'Everyone comes to me for help." Social support networks may center around the work settings. A disruption in work may eliminate the main source of positive social interactions.
Careful planning should include an examination of each of these:
Some individuals may not want to retire, but are having difficulties at work due to age-related problems (e.g., arthritis, fatigue). First, functional assessment of the tasks they perform and the requirements of the work environment should be made. Changes in the workplace could be made. Assistive devices could facilitate work tasks. Changes in work times (e.g., nap-times, shorter workday, shorter workweek).For those who want to retire, planning for fiscal and programmatic issues should be carefully done.
If possible, retirement should be "phased-in," with part-time employment. Other activities (e.g., attending a senior center or volunteering in the community) can fill non-working days.
Retirement programs can be quite varied. Some common models are:
When the effects of aging and disease become manifest, many individuals with disabilities are quickly moved to medically-oriented facilities. These types of residential settings are more restrictive and provide fewer opportunities for many integrated experiences.
There are several in-home supports that can be accessed to avoid a move. Visiting Nurses can provide home visits for evaluations and injections. Day care programs can assist in maintaining a person in their residential setting. Physical assists can also help keep the person in their regular environment. Attention to these and other potential in-home supports could also be made. In lieu of movement to a medical-oriented facility, supported living should be considered.
With less time devoted to work, older "retirees" have more time for leisure opportunities. Identifying what the person wants to do in their free time is one of the first tasks to be done. Some training may have to be conducted to prepare the person to do the activity (e.g., play bingo).
When possible, these activities should be conducted in integrated settings. There is a diversity of settings where all seniors spend their leisure time -- clubs (e.g., quilting clubs); sporting events (e.g., pitching horseshoes); or recreation (e.g., playing bingo).
Some pointers to consider in planning this integrated leisure: (1) Try the integrated leisurely, singly or in pairs, not as groups; (2) use someone, similar to a supported retirement coach, to assist in the integration process; (3) always be on the look-out for potential integration sites --scout the neighborhood; review community activity schedules.
For the older person with a disability there are many legal considerations. A threshold issue concerns decision-making capacity. Is the person competent to handle his or her own affairs? There are currently some alternatives to guardianship that can be examined. Can he or she deal with most areas of life, except for money? If this latter is true, alternatives should be investigated. Another issue affecting the family concerns estate planning. Inheriting money may be an impediment to receiving some services (e.g., Medicaid). Trust arrangements might be considered.
All persons presumed to be competent who enter a medical facility must be given the opportunity to develop advance directives for treatment. The person directs whether exceptional means should keep the person alive. How can this process be explained to and utilized by the older person with a disability?
Many families have maintained their family member with a disability at home. In some cases the family member plays an important role in assisting the frail, elderly mother or father. Sometimes the parent has continued an overprotective role and the individual with the disability has rarely left home without the watchful eye of the parent.
In these cases, a holistic program planning that includes the family is recommended.
The topics described above (e.g., health, productivity) should still be addressed. Another family area should be covered. These include:
In summary, program planning for older persons with developmental disabilities should encompass many aspects that are relevant to individuals of any age -- choice, productivity, independence and full inclusion. In addition, age-related issues such as health, retirement and home assistance should be addressed.
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Gambert, S., Liebeskind, S., & Cameron, D. (1987). Lifelong preventive health care for elderly persons with disabilities. The Journal of the Association for Persons with Severe Handicaps, 12(4), 292-296.
This article describes preventive health care procedures for older persons with developmental disabilities. Dietary recommendations are made. Specific medical evaluations and interventions are suggested with timetables for medical examinations. There is an excellent description of dental care and ways to minimize dental problems. An exercise program is also presented. This is an excellent article for care providers who serve older persons with developmental disabilities.
Enforcing the rights of older persons with mental disabilities. (1990).Published by the Mental Health Law Project and Legal Counsel for the Elderly.
This publication provides both an excellent overview to the Omnibus Budget Reconciliation Act of 1987 and a detailed description of screening/assessment process for individuals living in a skilled nursing facility. This manual is designed for individuals who serve as advocates in this field.
National Institute on Aging (1990). Age Pages. Washington, DC: U.S. Department of Health and Human Services.
This book describes practical advice that can be used by program planners to address aging problems. A wide range of topics are covered from physical disease (e.g., cancer, high blood pressure), health care (e.g., taking care of your teeth, skin care), to health advise (e.g., health quackery). The print is large for an older audience.
LePore, P., & Janicki, J. (1990). The Wit to Win.Albany, NY: N.Y. State Office for the Aging.
This book describes community integration programming for older persons with developmental disabilities. Five different models are presented as well as barriers to community integration.
Janicki, M. (1991). Building the future.Albany, NY: New York State Office of Mental Retardation and Developmental Disabilities.
This book highlights planning and community development models in aging and developmental disabilities. Resources and sample materials are included.