Aging Caregivers and Their Adult Children with Developmental Disabilities

This article from today's Washington Post is an example of a growing issue confronting adults with developmental disabilities and their families. Adults with development disabilities are living longer. For those whose care has been provided by their parents without government assistance, it is very difficult to gain access to needed supportive services when the aging parents become unable, either through their own chronic health problems, disability, or death, to continue to provide care. The supply of services, particularly government subsidized services, for adults with developmental disabilities is not adequate to meet the need. The result is long waiting lists for services. An individual may be on a waiting list for more that a year. In many states, the long waiting lists have led to the development of class action law suits against state government. The result court orders and consent decrees mandate the state to take certain actions in regard to the "members of the class." The members of the class are those individuals "known to the system" -- the persons on the waiting list or residing in state institutions. The adults with disabilities who have received support only from parents or other family members are not "known to the system." Disabled Man Died Before Needed D.C. Aid Arrived By Petula DvorakWashington Post Staff Writer Wednesday, October 22, 2008 "Mr. Johnson" badly burned himself while trying to cook. There were roaches on him when he showed up for medical appointments. He had difficulty using the toilet and rarely took his medication. But for years, the 65-year-old was deemed ineligible for help by the District agency that cares for mentally and physically disabled residents. For bureaucratic reasons, he officially did not exist. In February, the District finally approved funding for him. It was for his burial. continue reading the article