Care for the developmentally disabled has improved over recent generations and life and expectancy has increased. As a result, issues surrounding old age need more attention. Two studies out recently open the dialogue in two areas: hospice care and retirement options.
Advanced age and end of life concerns present areas often not focused upon by parent advocates with developmentally disabled children. There are many issues which are more immediate and time and energy are limited. But few parents will be present to advocate for their own children at end of life. These are prime examples of where listening to adults with DD and helping them advocate for changes will pay off in a better life for our kids.
Here are the abstracts:
Unique and universal barriers: hospice care for aging adults with intellectual disability.
Friedman SL, Helm DT, Woodman AC.
AbstractAbstract As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.
PMID: 23167489 [PubMed – in process]
8. Am J Intellect Dev Disabil. 2012 Nov;117(6):497-508. doi: 10.1352/1944-7558-117-6.497.
Fesko SL, Hall AC, Quinlan J, Jockell C.
AbstractAbstract As individuals with intellectual and developmental disabilities become more engaged in community employment, it will be critical to consider how their employment experience changes as they age. Similar to other seniors, individuals will need to consider whether they want to maintain their employment, reduce their work commitment, or retire completely. If they do choose to retire, what activities will they choose to engage in, and what service or supports might be necessary? This article considers the issues faced by all aging workers in regard to retirement planning and active aging as well as specific strategies for individuals with intellectual and developmental disabilities to remain active and engaged. Recommendations for service options, policy consideration, and future research are also discussed.
PMID: 23167488 [PubMed – in process]
9. Am J Intellect Dev Disabil. 2012 Nov;117(6):455-63. doi: 10.1352/1944-7558-117.6.455
Left Brain Right Brain 
This is something that is always in the back of my mind for my son as he ages. I know I won’t be around forever. It’s even more apparent to me when I consider my mother died at the age of 62 and I’m only 20 years away from that age myself now and my son turns 6 in March. Granted by the time I reach 62, he will be nearly 26 himself and he is making a lot of progress in his speech, behavior and self care also, but given that he has difficulty with certain aspects of daily life, I worry sometimes what may happen as he gets older, if I’m not around and he still has difficulties. I never stopped to consider, until the past few months, that something needs to be done about it now, not only so things are ready when my son needs them, but because are people already there or soon to be approaching themselves. I would love to hear some ideas that people have for these individuals as they age, if they still require assistance with living, or even as they age themselves. I’m still working on figuring out how to potty train my son, but it’s never too early to begin planning for his future, especially since his future won’t always include me.
Although, the aging can be graceful for people with mental disabilities in most developed countries, it is not the case in many former Russian republics, Asia, Africa and frankly, the rest of the world. Most children with intellectual disability, Down syndrome for example are taken straight to orphanages after their birth. Many of them will not live to the age of four, but if they are lucky enough to reach that mile stone, they are transferred to adult mental institutions, where the chance of their survival are slim. And, there it is their “Retirement Plan” and their “Graceful Aging” in a nut shell. We have a great responsibility to do whatever it takes to change this horrible state of affairs for these children, “We”, who are the parents, sisters, brothers and are in any way connected with children/adults with special needs are very well aware of this secluded world of such wonderful people. “We” have to educate the rest of the world about the value and dignity of a person with mental disabilities. Please join me on this mission at InternationalAdoptionMinistry.org.