The Safety Net

Supports For Persons With Developmental Disabilities As They Age

Aging and Developmental Disabilities
Persons with developmental disabilities may face some unique challenges as they age. Very little research has been done on this subject. In the year 2000, there were an estimated 641,000 adults with developmental disabilities who were over the age of sixty (60) in the United States. This number continues to rise and may be expected to double by 2030.

A Crisis in the Making?
According to the University of Chicago, Department of Disability and Human Development, two thirds of adults with developmental disabilities live at home and 25% of the caregivers are over the age of sixty. Increasingly family members with a developmental disability are outliving their parents. Many people in this situation have not previously been receiving what may be called “formal”services. They may be unknown to the regional center until a crisis occurs. At that point, the person may be at a high risk for crisis that could have long term health, behavioral and environmental implications. An individual who lived in the family home all her life may need supports from an unfamiliar system. According to one study, families who have been providing care fail to make future plans for their relative more than 50% of the time. Early efforts to identify individuals in need of future planning allows for adequate time to develop supports and plans that will result in greater satisfaction from the consumer and caregivers, and decrease the risk for the consumer.

What is to be Done?
Planning for transition to older adult services and planning to meet the needs of aging individuals with developmental disabilities and their circles of support is a new and emerging issue for regional centers and service coordinators.

Family support –The families of older adults with developmental disabilities living at home may never have imagined that they may not be able to provide care for their family member all of their life. Family caregivers have emphasized four things that they need in order to begin the transition for their family member to aging adult services and supports: respite services; increased knowledge of available services in the community; participation in planning for future care of their family member who may not be able to continue to live in the family home; and understanding estate planning and advance directives.

Regional centers- Staff may need to plan to increase capacity to provide such supports to older adults with developmental disabilities. Although aging services are available to all citizens, many providers of traditional supports may feel unprepared to provide services to persons with developmental disabilities. Organizations such as The Arc or other “grass roots”organizations can be effective coalition builders with traditional systems in local communities. This work requires careful planning with a long term vision for the effective and efficient use of both groups’resources. Older adults not currently receiving formal services may have an informal network of support. This may include siblings or other family, friends, part or full time employment, social networks, religious/spiritual affiliations, or any of a wide range of supports. Once this network is identified, it can be utilized as a rich source of support for future planning.

Summary
More and more persons with lifelong intellectual and developmental disabilities are living into older adulthood and facing changing needs in services and supports. Regional centers and other sources of support will need to recognize the emerging issues and begin long term identification of needs and planning for older adults.

There are several good sources of information about aging and developmental disabilities. Matthew Janiciki and Edward Ansello have both participated in recent research and collaboratively edited a book titled, Community Supports for Aging Adults with Lifelong Disabilities published by Paul H. Brookes Publishing Company. The Arc has published articles and Q & A pieces that are available on their web site at http://thearc.org. This link will also take you to many health specific links of interest.