Older Adults with Developmental Disabilities Want to Age in Place

Pamela Merkle is executive director of the St. Louis-based, nonprofit Association on Aging with Developmental Disabilities (AADD). “Individuals with developmental disabilities are living longer, thanks to advances in healthcare.” she begins. “For the first time, large numbers are outliving caregiver parents, and because they seldom have children of their own, their support networks shrink. The biggest awareness issue that we face is that many members of the public simply don’t know this population exists. We’re committed to helping them live independently and with dignity during their ‘older years.’”

AADD will hold its 28th annual conference May 21-22, and they’re expecting up to 300 social workers, nurses and other service providers from around the country. “Sessions will focus on giving them the tools they need to successfully support people with developmental disabilities who are aging,” says Merkle.

She explains that many of the issues faced by older persons with developmental disabilities mirror those of aging individuals in general, such as isolation, depression and how to handle retirement. “Like most people, they want to ‘age in place,’ not spend their golden years in a nursing home. Given that living within the community is more cost-effective, it’s important to both the seniors and our communities that there be more public programs to support that choice,” she continues.

Health and Social Contact

AADD offers both one-on-one and group opportunities that concentrate on identity, health, nutrition, exercise, balance, and cognitive stimulation. They also focus on building friendships and connecting to community services. “We help them get their social game going,” says Merkle, “and we work with them to develop a five-year plan that will keep them safe and aging in place.”

She mentions a hugely successful program, the Final Game Plan, which has unfortunately been discontinued due to lack of funding. One of its many initiatives involved having local physicians conduct geriatric assessments for participants in order to develop preventive health plans and manage existing conditions. “Most of the doctors knew very little about our population, but after conducting their first evaluation, they were hooked and became real advocates. Now we have a network of medical professionals who have learned about the healthcare needs of older individuals with developmental disabilities and have a greater understanding of how to communicate with them.”

Retirement Planning

For individuals who are 50 or older, AADD offers retirement services. While some of the participants have held community-based jobs, others spent decades in sheltered workshops. As with many members of the general population, they often tend to define themselves through the jobs they held for so many years. “So we focus on identity: ‘I’m a volunteer” or “I’m active in my church,’” explains Merkle. “If you don’t have something in place to fill the void after retirement and to maintain the skills you’ve developed, you’ll retire to your couch. You won’t be an active part of the community, and will most likely spend your “golden years” alone.”

While most of the people served by AADD are older, the organization also offers recreational activities and life skill training to individuals as young as 18. “The earlier you start building a foundation for independence and community interaction, the better.”

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