More than 1 Million Americans with an Intellectual and Developmental Disability Live with a Caregiver over the Age of 60

For almost 40 years, Janice cared for Vincent, her son with a developmental disability, at their home in upstate New York. For almost half that time, Janice’s daughter Veronica and Veronica’s husband, co-author Harold Pollack, silently feared their eventual responsibilities for Vincent’s care. Janice, fiercely independent, refused to discuss Vincent’s medical challenges and his long-term needs. Disagreements about Vincent’s care, physical distance, and Janice’s flagging energy made serious conversation difficult. Veronica and Harold offered to help Janice and Vincent move to greater Chicago, where they lived. Janice was touched, but never quite ready.

Janice died suddenly in early 2004 at the age of 68. With no plan in place, Vincent moved in with Veronica and Harold and their two young daughters, 760 miles from the only life he had known. There are many gratifying aspects to this story. Vincent became a treasured uncle to his two nieces and started a new life in Chicago, where he now lives in a group home. There were traumas and deep disappointments, too, a story told elsewhere, twenty years ago.

The Pollack family’s challenges remain all too familiar among families dealing with the intertwined challenges of intellectual and developmental disabilities (IDDs) and caregiver aging. An estimated 1.3 million Americans who live with IDDs live with a caregiver who is over the age of 60. As lifespans increase, many people with IDDs are themselves older adults. Most will outlive their parents, who are often their primary caregivers.

Many caregivers and families have not developed, discussed, or implemented transition plans in the event that an older adult can no longer assume the relentless responsibilities of caregiving. Feinstein and Pollack conducted qualitative interviews with 39 caregivers for adults living with fragile X syndrome. If anything, the responses from this 82% non-Hispanic White, majority college-educated sample likely overstated the extent of caregivers’ transition planning. Still, only 15 of the 39 caregivers (38.5%) reported concrete plans for caregiver transitions or contingent housing arrangements in the event that they could no longer care for their loved one. One caregiver reported: “We don’t have a plan. We should be working on a plan.” Another reported: “Our motto is to live longer than our kid…. We have to live one day longer.”

Parent-caregivers have many reasons to put things off. Many do not want to burden their other children with the responsibilities and challenges that come with this discussion. Of course, the lack of such discussion increases the risk that their other children will assume these responsibilities and challenges in the midst of a family crisis. As happened to the Pollacks, people will make critical decisions without adequate preparation, often lacking basic information about their loved one’s medical and social needs.

Policymakers and the broader society are similarly unprepared. The most prominent public efforts focus on children, adolescents, and young adults, and correspondingly overlook opportunities for proactive, long-term planning at each of these life stages. The medical community easily overlooks these issues, too. “Care transition” generally denotes the transition from pediatric to adult care. Equally critical transitions from adult to older-adult services receive less attention, and are frequently left undiscussed, and thus unaddressed.      

The opportunities missed are particularly poignant given the lifecycle challenges experienced by persons living with IDDs. To note one prominent example: Persons with Down syndrome face more than a 90% lifetime dementia risk, experiencing higher incidence among persons in their late 40s than among Americans over age 70. These realities must be addressed in families’ life plans.

In addition, roughly one-third of caregivers for young adults who live with fragile X syndrome are injured by their loved one. These externalizing behaviors create safety issues for older caregivers, and complicate transition planning. An adult sibling with young children may be less willing or able to house a sibling with IDD who displays such behaviors. For similar reasons, these behaviors can complicate options for other residential placements.

In addressing these challenges, policymakers and clinicians must find better pathways to partner with families. First and foremost, caregiver transition must unfold within an ongoing, planful process, with proper professional help available if families need it. Such transitions should not be avoided, then suddenly driven by crises in the lives of people with disabilities and their loved ones.

Persons with disabilities require strong and predictable, socially integrated transitional supports, as they prepare to navigate life’s inevitable adjustments when their parent-caregivers enter their senior years. Older caregivers and their families need information and peer supports to engage formal and informal support networks, and to formulate proactive and realistic transition plans. Families also require effective and accessible local services that can help them make needed connections to Independent Service Coordination (ISC) agencies and other important providers.

Policymakers and clinicians must also address punishing intersectional inequalities that pervade the IDD world. In Illinois, where we live and work, IDD services across the lifespan are far more available, and are of palpably higher quality, within our most prosperous communities. Illinois’ top 5 elementary schools for special education serve the state’s three most affluent school districts, with only one Chicago school (that serves an affluent, majority White community) in the top 10. High school staff in affluent settings have greater resources to help families manage the practicalities that accompany students’ disabilities, and to help navigate the difficult transitions from school-based to adult disability services. Social workers and support staff are far better situated to provide such help in affluent communities, where they face fewer competing demands to address housing precarity, community violence, and other prevalent concerns within our state’s low-income communities. Similar disparities appear in the domain of adult IDD services, where our state’s most prominent charity fundraising for the IDD community serves organizations with the greatest material resources.

Affluent families also possess more and better options to address caregiver burdens and transition issues. They can hire paid caregivers to assist with respite care and other pressing needs. They can engage financial and social service professionals to assist with proactive planning and to help navigate public programs’ administrative burdens. Prominent initiatives, such as Achieving a Better Life Experience (ABLE) accounts, are designed to help families navigate the constraints of SSI’s $2,000 countable asset limit in providing for future needs. As currently configured and marketed, these accounts fit the grooves of upper-middle-class life, with virtually zero take-up among non-affluent households.¹

One key opportunity facing states is to make optimal use of Medicaid 1915 (c) waivers to support caregiver transition services, and to feature such resources prominently in communications and service delivery to participating families. Specific resources should be provided to caregivers at specific milestones, such as caregivers’ 60^th or 65^th birthdays, and corresponding milestone birthdays in the lives of adolescents and adults living with IDDs.

Caldwell and Gladstone describe key resources provided to families under the Older Americans Act (OAA). These authors document both the necessity and the difficulty of bridging distinct aging and disability service systems to meet families’ longitudinal needs. For example, the authors document ways that Aging and Disability Resource Centers (ADRCs) can be configured better to serve persons living with IDD, and they describe one particularly pertinent model: a peer-facilitated workshop intervention called The Future is Now. Workshop sessions, operated through the University of Illinois at Chicago, provide a venue for families to discuss future living arrangements, work and retirement, other challenges, and milestone tasks. Families then develop and document their future plans, and document required actions to execute these plans. The authors also describe other valuable efforts, such as Michigan’s Older Caregivers of Emerging Adults with Autism and other Neurodevelopmental Disabilities (MI-OCEAN), which matches older caregivers with family support navigators to provide needed service linkages and expert advice.

Platforms such as ABLE accounts can be similarly strengthened and subsidized for non-affluent caregivers, as vehicles to start early in creating and sustaining the financial foundations for life outside the family home.¹ A lifetime of service experiences leads many low-income families to distrust public benefit and medical care systems. Families correspondingly require assistance from care navigators and others with organic ties to their own communities to investigate services and to navigate these systems.

Families also can be connected with integrated service organizations that offer day services for persons living with family, and that provide community-integrated living arrangements within the same inclusive community. Tactile experience within such service settings allows persons with IDD to glimpse their future living arrangements, as they prepare for their eventual transition from the family home.

Perhaps most important, our society must support families to have the important and difficult conversations that acknowledge and address the human reality of aging. Families must hold these conversations before they are immediately needed, rather than initiating these conversations in moments of crisis—or, worse, to regret in those moments and for decades later, that the vital conversations never occurred, with all-too-predictable human consequences.

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