As Individuals with Developmental Disabilities Live Longer, They May Outlive Caregiver Parents
During Dickinson Law‘s recent program on Dementia Diagnosis and the Law, one of our panelists, Elder Law practitioner Sally Schoffstall raised an issue planning professionals are seeing more often, families who are concerned about the long-range needs of children with developmental disabilities. I know that over the years I have often had law students whose interest in disability and estate planning law began with a brother or sister with special needs, and they are thinking about their own future roles in helping the family plan.
The good news is that better early health care often means an extended life for disabled children, but that very fact raises the probabilities on living longer than the people who have been primary caregivers, especially their parents. As we heard from medical professionals at our conference, individuals with Down Syndrome, for example, are now less likely to succumb to physical impairments such as developmental heart problems, but still face a significant risk of early onset of dementias, with an estimated 30 percent of those in their 50s already experiencing symptoms similar to Alzheimer’s Disease.
On May 21-22, a St. Louis-based nonprofit organization, Association on Aging with Developmental Disabilities (AADD) will hold its 28th annual conference. The conference draws an audience of professionals from a wide range, including social workers, nurses and other service providers. As with most people, individuals with disabilities want to “age in place,” and that takes extra planning to manage financial assets. Pamela Merkle, executive director for AADD explains:
“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. . . .
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.”
For more, see this commentary from the Special Needs Alliance, and look for related links. My thanks to Sally for providing links to this conference information!