I am the Chief Executive Officer for Jewish Foundation for Group Homes, a Montgomery County, MD-based provider of community living supports to adults with developmental disabilities. I began my career in this particular field in 1987, and have watched both the systems of services and supports, as well as the philosophies that inform them, change in overlapping ways over the ensuing 32 years.
At the turn of the 20th Century, the average lifespan of a person born with a developmental disability was 19 years. By the turn of the 21st Century, the average lifespan had grown to 66 years. Advancing science and medical technology has had a profound and lasting impact on lifespan, and people with developmental disabilities are living longer than at any point in human history. We rightly celebrate longer, fuller lives for people with developmental disabilities--my organization, JFGH supports a woman who is 92. She is, by virtually any standard, a miracle.
At the same time, people with developmental disabilities living longer brings challenges to systems of long term supports and services and healthcare systems, to name but two, for which we are inadequately prepared and resourced. More specifically, Medicaid-financed systems of supports for Americans with developmental disabilities are ill-prepared to support people who are experiencing forms of early-onset dementia and Alzheimer's disease; and, while Home and Community Based Service (i.e., Medicaid waiver) programs have proliferated across the US since the 1980s to support people in community settings, very little attention has been paid to how these programs can shift to support people with developmental disabilities as they age. Concepts that are bandied about as colloquialisms, such as ‘aging in place', for people who develop neurotypically, and models of care and support are being developed. For people with intellectual and developmental disabilities (IDD), these models of care are much slower in their development, and are broadly inaccessible.
Among the Council's membership, Dr Matthew Janicki, a recognized expert in the relationship of IDD to dementia and dementia care, and a small band of his colleagues, have informed the research literature as to approaches to supporting people with IDD and dementia in community settings. And, there is enough in the literature to create a body of best practice for community-based organizations like JFGH. However, the public funding that pays for community-based supports is not aligned with those best practices at best, and at worst, is simply insufficient to provide any meaningful care that is tailored to the needs of people with IDD receiving Medicaid waiver supports who are experiencing dementia.
As an example, JFGH supports a gentleman--"John"--with Down syndrome who is 61 years old. As you all perhaps know, people with Down syndrome experience early onset dementia and Alzheimer's disease at a disproportionally higher rate than their neurotypically developing peers. To some extent, John was a bit atypical to the extent that he lived well into his 50s without experiencing any signs of dementia. Three years ago, John's life changed radically and seemingly overnight. Signs of advancing dementia, subtle at first, because substantial. In an exceptionally short period of time, John lost basic skills in activities of daily living, including his abilities to feed himself, use the bathroom independently, and even ambulate independently about his environment. More substantial than these losses was the radical change to his personality. A once gregarious, fun loving friend and colleague to many stopped speaking, interacting socially, making eye contact, and the host of other personality traits that had once earned him the nickname "Disco John."
As the direct support and other staff at JFGH watched this process, we were unprepared as an organization to support the staff's process of adjusting to John's fast-evolving support needs, as well as how to support staff emotionally as they experienced John's loss of connection to them. While staff aren't--and arguably should not be--family, they experienced John's loss of capabilities every bit like a family member might.
As JFGH grapples with fitting John into a service system that is not equipped and resourced to support his needs, we are left to grapple with the potential of simply discharging his from our care as "medically complex," knowing that he would live out his days in a nursing home, a strange and unpredictable environment at which John will never be "home."
In JFGH's community living supports, 40% of the people we currently serve are aged 40 years or more. These are people for whom supports must evolve to both acknowledge the aging process, the onset of dementia that is likely, and how best to support them where and how they age. Dr Janicki and others have provided a support framework designed to deliver quality outcomes for people with IDD and dementia--we have a good idea of what to do.
What we don't have is the means with which to do it.
My call to action to you today is several fold.
To whatever extent the Council can, I urge you to consider taking a specific position(s) that:
- Advances a wider, intentional dialogue on practical solutions that are culturally appropriate and accessible to people with intellectual and developmental disabilities who are experiencing dementia;
- Advocates for resources being explicitly dedicated to the support needs of people with intellectual and developmental disabilities who are experiencing dementia--from research funding to specialized services and supports (through, for example, demonstration waivers) that are fully funded; and,
- Informs the development of a set of universal support standards to address the care needs of people with IDD and dementia that can be used to assess system ‘readiness' to support the aging population of people with IDD.
In full disclosure, those of us in the field of long term supports and services for people with IDD have made an art form of "admiring the problem."
In 2002, then-16th United States Surgeon General, Dr David Satcher, issued a report in which he lamented the lack of access to quality healthcare for people with IDD that could deliver an improved health status and better health outcomes. Eighteen years later, progress has been glacial.
In 2013, Dr Janicki and colleagues published Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia.
And, in 2020, organizations like JFGH, largely funded through Medicaid waivers, continue to grapple with how best to support people like John with funding that is inflexible and simply doesn't contemplate shifts in supports needed to allow John to age in place, to be supported through his journey, to be surrounded by the people most committed to the quality of his life.
The Guidelines are developed, JFGH and countless other agencies like ours are ready to implement and test them, to amass data that inform the evolution of best--and actually evidence-based--practices, and to support people with IDD as they age in place in their homes and their communities. To any extent the Council can push this agenda, you have a willing partner in JFGH, and I stand at your beckon call.