By Pamela Merkle, Executive Director, Association on Aging with Developmental Disabilities

Thanks to medical advances, people with developmental disabilities are living longer and that longevity is bringing some very difficult and unexpected challenges. Their parents, who have often been their primary caregivers, are passing away and, unlike other seniors, they generally have no adult children to assume that role. It is not unusual for parents of individuals with developmental disabilities to have the mindset that they or other family members will always be around to take care of their loved one. Very often this is not the case.

As the “network of support” starts fraying, people with developmental disabilities are often misdiagnosed and under-treated, running the risk of spending their “golden years” in an institution-contrary to the spirit of the Olmstead decision. When asked, many people with developmental disabilities will say, with sadness, that when they can no longer care for themselves, they will have to go to a nursing home.

The Association on Aging with Developmental Disabilities (AADD), in St. Louis, Missouri, launched an initiative this past January to provide a safety net for this population. The cost of long-term care continues to rise, with that cost now ranging from $6,500 to $12,500 per month. Therefore, enabling these individuals to age in their own homes, which is the choice of most seniors, is both economically and socially responsible. It has also been shown that staying in familiar surroundings and maintaining as much activity as is physically possible will lengthen the life of individuals with developmental disabilities. Their activity could drastically decrease in a long-term care setting.

Our program is called the “Final Game Plan,” and it consists of a series of steps designed to collect information vital to an individual’s health and well-being, understand and advocate for their preferences, and strengthen the relationship between individuals and their health care providers. The goal is to keep people home as long as possible or desired. This program is funded through the St. Louis Office for Developmental Disability.

Each year, we plan to identify 40 people over the age of 45 who wish to avoid extended stays in long-term care. They complete a “life review,” produced on DVD, which can then be shown to medical providers and caregivers if a medical incident has rendered them unable to advocate for themselves. The video will communicate their strengths and limitations at the time it was taped in order to build stronger bonds with those working to restore their health and to provide a visual and audio target for their efforts. “A picture is worth a thousand words.”

The life review also provides a wonderful keepsake for the individuals’ families and friends, who can watch and listen to them reflect upon their lives past, present and future. The life reviews are being completed in partnership with the University of Missouri- St. Louis under the direction of Dr. Tom Meuser.

Program participants also complete a geriatric screening and assessment in order to create a preventive health plan and to manage existing conditions. Recommendations by medical doctors with expertise in geriatrics are made concerning medication, nutrition, exercise and their fall risk. They also offer tips on managing such daily activities as bathing, eating, toileting and dressing. The staff from the Association on Aging with Developmental Disabilities, who have developed knowledge and gained trust from their clients, provide one-on-one support during the geriatric assessment in order to assist them with answering difficult questions and put them at ease. AADD Staff then support these individuals in following the recommendations gleaned from the assessment.

No client fees are charged for any of these services. These assessments are being conducted in partnership with Saint Louis University Medical Center, Division of Geriatric Medicine, under the direction of Dr. John Morley. The project will target 10 individuals each year who are currently hospitalized or living in a nursing home in order to advocate for their return to the community. At the same time, we plan to educate 12 hospitals and long-term care facilities each year on how to better support people with developmental disabilities.

Another aspect of the Final Game Plan program is educating individuals with developmental disabilities about advance directives, wills and helping to pre-plan funeral arrangements for those who want to complete these very difficult but important steps toward aging and death.

Halfway through our first year, we’re encouraged by the program’s progress. Of the five participants who have been hospitalized since January, one passed away and the other four returned to their homes. Education and training have been provided to 10 hospitals and long-term care facilities. There have been 25 life reviews and nine geriatric assessments completed with amazing success. Understanding and focusing on the distinct needs of this group can improve the odds that individuals with developmental disabilities are not only living longer, but better, as well.

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney.

 Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance –” The article may not be reproduced online. Instead, references to it should link to it on the SNA website.