The current population of people with developmental disabilities who have survived into their sixth, seventh, & eighth decades of life have been left out on most of the support programs and services younger people with disabilities and thier families now expect. The number of aging people with developmental disabilities living in the United States is estimated to be between 250,000 and 1,000,000 or more, no one has been able to make a valid count.
This aging population did not have the opportunity to attend schools, most do not read or write and few have received the supports and services now available to the younger generations of children and adults with developmental disabilities. Many have lived with their parents all their lives and the family never received assistance or entry into formal support services. Their world is that of the home environment and what their aging caregivers are willing to provide. Currently, these individuals are survivors who have lived for fifty or more years who may have mild or moderate levels of disabilities. Social skills and communications depend on their involvement and environment. When asked directly what they need or want, the majority have mentioned keeping their relationships/friendships, access to activities in the community, and staying out of nursing homes and large facilities. Today, many elderly families do not have the ability to continue to provide care and crisis occur with little or no preparation for assistance. When asked what their needs were, the majority responded with someone who could continue the care of their child after they no longer could do so, availablility transportation, need for later life planning, and most importantly information on what programs and supports are currently available and how they can get that information.
Providers and program staff are not prepared to serve this growing population. Most MR/DD staff are not trained in aging processes or aware of the needs of older clients. Aging services staff are not familar with working with people with developmental disabilities and may not be ready to step in to help without training and education to work with this senior population.
Some basic questions need to answered by the administrators and professional service providers for this growing population of people aging in place and living well into the retirement age.
What do you do for a person who attends vocational programs when they should be enjoying retirement?
How do you assist a family when the care giver is unable to continue due to health problems or death?
What about the unique needs of the population with Down syndrome who may experience pre-mature aging or Alzheimer’s?
Are the aging systems and mr/dd systems at the state level or the local level currently working together to address the growing needs of a population that is eligible for both systems' supports and services due to being a certain age and having an eligible disability. If not why not? How much longer should they have to wait? The population will not just go away or die out. The crest of the baby boomer wave is now in sight.
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