The Administration on Developmental Disabilities (ADD) in Washington, DC expressed these concerns in a request for proposals in the early 1990s published in the Federal Register:
"People with developmental disabilities face enormous odds.. they lack the basics of American life--a good education, a job, or a real home. Tagged with diagnostic labels, segregated, and discriminated against, many lack the information and assistance they need to make informed choices. Their abilities are not recognized; and their differences set them apart, even from family members who love them, but cannot afford or manage their special needs. The burden on families...may become insurmountable, resulting in dramatic losses to the family, including jobs and income, and the family home, displaced family members, or the total collapse of the family."
Even beyond this, many older families never envisioned they would be caregivers for their children with developmental disabilities for their entire lives. Today, we discover on a daily basis, aging parents and older family members who have been caring for a family member with developmental disabilities for four and five decades with little assistance of support services or community agencies. Or we find siblings trying to cope with the responsibilities of their own children and have not had frequent contact with their brother or sister and are in need of assistance now they are the only family left with the death of their parent(s). The mental retardation/developmental disabilities service systems have not been prepared to work with an aging population and are not aware of individualized needs.
The ideal support system for the older population with developmental disabilities builds on a foundation of individualized preferences and choices that reflect the person's cultural, environmental, and life experiences. These supports include remaining active in the neighborhood and the local community for as long as possible without experiencing isolation, abuse, or neglect. or losing control of one's later life choices that include the ability to communicate, "I want, I like, I need, or I don't want, I don't like and I don't need!" The community has many varied resources that may open a new world of opportunity for involvement of the older person or persons who seek to transition into the later life years. The choices and options should be self-selected and preferred including social, recreational, and leisure activities. Many older people with developmental disabilities have demonstrated the ability to grow and learn when provided the chance to participate in self-selecting programs and services that include both formal and informal supports. The older population needs include: homes, medical services, social, recreational, and leisure activities, opportunities for work, friends and family, on request transportation, and to interact in decisions affecting their futures. There are unique needs due to both chronological aging and the whims of society.
Many groups have been asked to share their ideas on the needs of aging and older people with developmental disabilities living across the country. The responses provided by the older people, family members, MRDD staff, aging services staff, and care providers are all similar.
Thomas J. Lottman, Co-Principal Investigator for the RRTC Consortium on Aging and Develop mental Disabilities at the University Affiliated Cincinnati Center for Developmental Disabilities shared his insights on the needs of Aging and Developmental Disabilities: State of the Art, State of the Need, 1993) "...Policy makers, service providers, and researchers would do well to consider the "state of the need" of older persons with developmental disabilities that has emerged from the cumulative body of research.... It is possible to and important to draw one conclusion that has significant implications for future research as well as the translation of research knowledge into practice. The conclusion is that as persons with developmental disabilities age they become, as a group, more like their age cohorts without disabilities and increasingly different from each other in preferences , needs, and functional competence. Aging does not "homogenize" the population of persons with developmental disabilities. This simple conclusion has profound implications not only for research, but also for the planning of services.
For the service section, the heterogeneity of the population also has significant planning implications. At the policy level, we must find innovative funding mechanisms to insure that dollars follow people rather than people following dollars. We need to develop a range of service options congruent with the spectrum of need and capabilities that characterize the population. At the systems level, we ought to increase collaboration between aging and developmental disabilities services, recognizing the age-related convergence of needs of persons with and without disabilities. At the programmatic level, we need to implement a "person-centered" approach to planning that meaningfully involves the older person with a developmental disability their family, friends, and other supports in a way that is responsive to their individual preferences and needs. As we reject the historic "cookie cutter" approach to service planning, we must substitute a truly different way of thinking about a service and supports and not just change the cookie cutters. A conceptualization of community integration should reflect the belief that "community " for all of us represents people and places that give us the opportunity to satisfy the needs for belonging and becoming, and that the locus of living, working, and recreating do not necessarily guarantee this opportunity. True person-centered planning involves not the assumption of preference, but the assessment of preference. Finally, the identities of older persons with developmental disabilities are defined neither by their age not their disability, but rather by their personal history, current preferences, and future hopes. It is to this identified person that we deliver services. The legacy of older persons with developmental disabilities is one of survival and life-long adaptations, and this legacy demands nothing less.
After the first two years of the Project, the first assessments of current and future needs indicates the similar needs expressed by others across the country. Older individuals have expressed their needs for "something to do" activities and housing. Family caregivers have vocalized their needs (1) for respite care as many parents have not taken a vacation or had a weekend alone since the birth of their child with disabilities, (2) becoming aware of the services that are now available in the local community-- family members said they did not know what services and supports they might be able to use or what was available, (3) finding someone who will be responsible when they are no longer able to continue the care-giving--some families explained they did not expect their other children to step in and take on this responsibility, and (4) understanding estate planning and advance directives. Local community agencies who are participating in the first seven sites are looking at their needs for training and education in many different areas to be able to assist these aging individuals and older caregivers and to work together with other agencies in their area. Two that have been expressed by the sites are the aging impacts on people with developmental disabilities and how to communicate with people who have developmental disabilities.
Aging has been defined as the erosion of an individual's functional reserve with the passage of time (Wisniewski & Merz, 1985). This erosion may be influenced by:
Hearing losses usually occur as one grows older. Usually 30% of the people between the ages of 65 to 74 suffer some degree of hearing impairment. This percentage increases to 1 in 2 after the age of 75. High sounds, some consonant sounds (especially "Z", "Q","S", & "T'), and tinnitus (ringing in the ear) are the more frequent problems. People with Down syndrome may have more frequent hearing loss than the general public. Many have acquired hearing loss in their childhood as a result of middle ear infections. Even as early as their twenties, individuals with Down syndrome are subject to hearing losses experienced by the general elderly population. An annual hearing exam should be provided as individuals grow older.
Some of the physical changes that may occur include difficulty with seeing colors at the low end of the color spectrum, especially blues and purples. "Floaters" or tiny spots or specks may appear in the vision field. Dry eyes or excessive tearing may be present, farsightedness gradually affects people over the age of 40. Some of the more common eye diseases include:
Many changes in the bones of the body occur after the age of 40. Women experience changes in bone loss, there is a decrease in the fluid between the joints and the disks of the spine. By sixty five, hardly anyone has not experienced some type of joint disease, especially arthritis. Loss of potassium and deterioration of the muscles make physical labor an arduous task. Diseases prevalent in the later life years include:
Persons with developmental disabilities especially those with cerebral palsy may experience reduced mobility at an earlier age than the general population. People with Down syndrome may have decreased muscle tone, curvature of the spine, lax ligaments, and hip problems. Up to 90% of individuals with Down syndrome have bunions that may cause balance and walking difficulties.
As one ages, the sense of taste and smell decreases. Aging individuals may experience problems with swallowing caused by either a decrease in the production of saliva or thickening of the lining of the esophagus. Diminished gastric juices may cause indigestion or ulcers. Medications may bring on constipation, which can aggravate diverticulosis pouches in the intestines. Hemorrhoids are common in older persons and should be brought to the attention of a physician if rectal bleeding occurs. The loss of teeth due to common dental practices in the 1930s and 1940s may create digestive problems in the later life years. People with Cerebral Palsy may have experienced life long eating problems which may become worse with the age related esophageal changes.
The heart is one organ of the body that does not regenerate new cells when the old ones are damaged or die. As one ages, diseases of the cardiovascular system may become prevalent. Hypertension may affect the heart or cause strokes, fat buildup in the blood vessels may cause hardening of the vessels restricting the flow of blood to the heart, lungs, brain, and other organs. Forty percent of the people with Down syndrome have congenital heart disease. These individuals may also develop heart murmurs that were not present at birth.
As one ages, the brain starts to decrease in size due to atrophy, loss of neurons, and decreased blood flow. Plaques form producing a slowing of the information transfer between the brain and the nerve endings throughout the body. There is a general slowing of reaction time and physical movements of the body. Sleep patterns are changed as one grows older with more interruptions and more periods of awakening during the night.
Marilyn Adlin, Institute on Aging and Adult Life at the University of Wisconsin, Madison, shares some aging and health facts on individuals with Down syndrome. "in 1929 life expectancy for a person born with Down syndrome was 9 years, increasing to 18.3 years by 1961, and today the life expectancy is 55 years."(pg. 20 IMPACT) While individuals are now living longer, they also experience changes related with aging prematurely. Awareness of these circumstances by family members and service providers may aid in reducing the onset of more disability and preserve optimal functioning. Hawkins and Eklund (1992) have reported in their longevity studies where men lose their skills earlier than women and men die before women.
Approximately 4 in 10 individuals with Down syndrome exhibit dementia of the Alzheimer's type (Dalton, 1991, Adlin, 1993). Changes in the brain associated with Alzheimer's is present in all persons with Down syndrome by the age of 40. The duration of Alzheimer's in individuals with Down syndrome is 3.5 to 10.5 years from diagnosis to death. Early symptoms include loss of memory, getting lost in familiar surroundings, and decreased verbal expression. Later stages may consist of apathy, inattention, decreased social interaction, daytime sleepiness, gait deterioration, muscle spasms and seizures. However, not all these symptoms may be a result of Alzheimer's. Sleep apnea, sensory losses, other diseases, and discomforts may cause some of these same problems. Other causes that are not Alzheimer's include: (1) depression, (2) adjustment to changes, and (3) limited capacity to express emotions attributed to a lack of education and may also contribute to behavioral changes and functional declines.
Children and adults with Down syndrome have been observed having sleep apnea. Symptoms may include: excessive daytime sleeping, failure to thrive, behavioral disturbances, declining functional skills, and disrupted sleep patterns. Predisposure factors among individuals with Down syndrome may include: an abnormally small upper airway, obesity, increased secretions, tongue weakness, decreased muscle tone causing a collapse of the airway, and enlarged tonsils and adenoids due to frequent infections. Because of these factors, it is reasonable to expect an increase in the prevalence of sleep apnea as individuals with Down syndrome age. This has been found to be true in the general population-an association between increased sleep apnea with increased aging.
Twenty to thirty percent of people with Down syndrome have hypothyroidism. The symptoms include: confusion, functional decline, constipation, lethargy, depression, fatigue, and dry skin and hair. If not treated, this may cause hallucinations and coma.
This brief overview of these specific aging processes and the impact on the population with developmental disabilities may have encouraged the reader to seek more in-depth information. Inquiries may be made to the Supports for Aging with Developmental Disabilities Project at the Texas Department on Aging. Each Area Agency on Aging was provided a basic library of approximately 16 different books, videos, and informational materials during the summer of 1997.
Older adults with developmental disabilities vary widely in their communication abilities. Some individuals can speak as well as other adults while others are almost nonverbal and rely more heavily on gestures. Not all individuals with developmental disabilities have mental retardation, but they may have difficulties in communicating related to another disability (e.g., Cerebral Palsy, Autism, etc.).
For individuals with mental retardation, communication skills are related to their cognitive ability and to their past experiences. Cognitive ability affects comprehension, short term memory, and attention span. Based on their past experiences, individuals may be uncomfortable in communicating with unfamiliar people in a hew setting and may need additional support. Also, limited experience in making choices may have resulted in greater reliance on others. The following general variations in communication skills have been clinically documented according to severity of impairment.
Draw upon the skills that you have developed in working with older adults with sensory impairments and with dementia. The techniques for supporting older individuals with mental retardation and other developmental disabilities are essentially the same.
If possible, learn about the individual's communication strengths and limitations in advance by talking to developmental disabilities agency staff and/or family members so that you can determine and implement the supports s/he will need.
Examples:
1. Help individuals feel comfortable and at easy in their environment. Staff may have to take a more active role to encourage socialization and to orient individuals to their environment.
Examples:
2. Suggest participating in "hands-on" activities. Older adults with mental retardation are more likely to enjoy "hands on" activities like arts and crafts, board games and field trips rather than more passive activities such as lectures and demonstrations.
3. RESPECT DIFFERENCES. Remember your way is not the only way. Some persons with disabilities have ritualistic habits--their own way of doing things. They may become upset if you attempt to change their routine.
4. Generally, people with mental retardation like to please and like to help. If they can help in any way, let them. it shows that value them (you could have a friend for life).
1. Help the individual feel secure and at ease. Remember that individuals with disabilities are PEOPLE first. Interact with them in the same manner that you would if they did not have a developmental disability. Observing the individual's vocabulary and personal belongings may tell you something about his/her functioning level.
2. Introduce yourself, or ask someone to introduce you. Break the ice by commenting about the weather, the environment, or by giving the individual a compliment. initiate conversation by inquiring about a personal belonging or some other concrete object. Don't use abbreviations, jargon, technical terms, or idiomatic expressions.
3. MAKE EYE CONTACT when speaking. Place yourself physically at their level. Don't stand if they are sitting.
4. REDUCE OR ELIMINATE DISTRACTIONS so the individual can concentrate on your conversation.
5. DON'T ASSUME that because the person doesn't talk that s/he doesn't understand or can't talk. Maybe s/he is shy. Maybe s/he has been told not to speak to strangers.
6. DO ASSUME that the person can read your body language. Individuals with developmental disabilities can sense if you're uncomfortable. This will interfere with your ability to gain their trust.
7. WATCH the BODY LANGUAGE. Does s/he refuse to look at you or acknowledge that you're there? Are her/his arms and legs crossed signifying that s/he may not be taking in what is being said?
8. TAKE YOUR CUE FROM THEM Some individuals like to be touched. In fact, they may hug you at your first meeting. Others become upset if touched at all.
Communicate in a consistent and structured manner.
Examples:
Be aware of the tone of your voice since it can convey unintended meanings.
Examples:
Get feedback from the individual to verify his/her understanding.
Examples:
If you ask a question, give the individual plenty of time to respond.. Some people need time to process what you have said. Then they need to put together their reply. This process may take minutes, not seconds. If you show impatience, they will try to hurry the process. Information gets all jumbled up then. If s/he does not appear to understand, ask the question again in another way. Think about what you said. Simplify or leave out any difficult words.
If you ask a question and the individual responds on another topic, LISTEN briefly to what s/he has to say to see if it tells you anything about what s/he is thinking. Then try to bring the person back to your topic.
People with mental retardation may want to please you so they pretend to understand by giving some pat answers to keep themselves in the conversation, like, "Oh, I didn't know that." Repetitive responses like this maybe an indication that you should SPEAK IN SIMPLER SENTENCES using less complex vocabulary.
Some people are visual learners. Others are audio learners. Others need to be moving to learn--even to think. Don't try to make a person with a disability sit still.
Although signs of pending agitation are idiosyncratic, subtle cues to look for are pacing and turning away or withdrawing from the group. Clenched fists or the veins showing in the neck indicate the individual may be agitated. Although your natural reaction may be confrontational (e.g., "What's going on?" "Why are you acting like this?"), it is important to present yourself as a calming stimulus by adopting a calm and soothing effect and to avoid confrontation.
*Adapted from the work of Alan Factor & Allison Brown, Rehabilitation, Research and Training Center on Aging and Mental Retardation. and Kathy Lindsey with the Association for the Betterment of Retarded Adults. University of Illinois at Chicago.
Adlin, Marilyn, ( 993) Health Issues for Aging Persons with Down Syndrome. IMPACT: Institute on Community Integration, College of Education, University of Minnesota, Minneapolis, MN. Vol. 6 (1).
Dalton. A. (1991) Alzheimer's and Down syndrome: Health Issues. Paper Presentation. Lexington Conference on Aging and Developmental Disabilities. Lexington, Ky.
Hawkins, B. Eklund, S., and Martz, B.L., (1992) Detecting Aging-Related Declines in Adults with Developmental Disabilities: A Research Monograph. Rehabilitation Research and Training Center Consortium on Aging and Developmental Disabilities in conjunction with the Indiana University, Institute for the Study of Developmental Disabilities. Bloomington, Indiana.
Lottman, T.J. (1993) Aging & Developmental Disabilities: State of the Art, State of the Need. IMPACT, Institute on Community Integration, College of Education, University of Minnesota, Minneapolis, MN. Vol. 6 (1).
Wisniewski, H.M. and Merz, G.S. (1985). Aging, Alzheimer's Disease, and Developmental Disabilities. In Aging and Disabilities: Issues and Approaches (Janicki, M.P. and Wisniewski, H.M. (eds.)). Baltimore. Paul H. Brookes Publishing Co.
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