After Us: The Race to Build a Future for Adults With Disabilities Before Their Caregivers Are Gone
For millions of families, the answer exposes a system unprepared for adulthood, aging, and long-term disability care.
Across the United States, a quiet but urgent question is reshaping how families, policymakers, and advocates think about disability care: What happens when family caregivers are no longer here?
For millions of families raising children with autism, intellectual disabilities, and other high-support needs, the answer is increasingly unclear, and increasingly urgent. While much of the national conversation around disability services focuses on early intervention and education, far less attention has been paid to what comes next: adulthood, aging, and long-term care in a system still largely built on unpaid family labor.
Today, an estimated 75 percent of adults with intellectual and developmental disabilities (IDD) live at home with a parent or relative. That model, long considered the default in the absence of robust public infrastructure, is now under strain as caregivers age, face declining health, or die without a clear transition plan in place.
At the same time, a growing movement is emerging to fill that gap. Across the country, families and private organizations are beginning to develop what are often described as “intentional communities” or lifetime residential models—environments designed to provide stable housing, social structure, and varying levels of support throughout adulthood. These range from small co-housing networks to larger campus-style developments modeled loosely after senior living communities.
The push reflects both innovation and desperation.
“There is no system waiting for our children,” one parent advocate said at a recent planning meeting for a neurodiverse housing initiative on Long Island. “So families are trying to build one.”
But these models, while promising, remain unevenly distributed and often financially out of reach. Many rely on a patchwork of private funding, Medicaid waivers, and local partnerships—leaving access inconsistent and dependent on geography. Meanwhile, state-level waiting lists for Home- and Community-Based Services (HCBS)—the primary federal mechanism for funding in-home and community care—can stretch for years.
Behind the policy gaps is a workforce crisis that continues to destabilize even existing services. Families frequently report being unable to secure consistent caregivers through Medicaid-funded programs, forcing parents to step in as full-time providers well into their child’s adulthood. In some cases, parents who are eligible to be compensated for caregiving face bureaucratic hurdles or limited approval pathways, further reinforcing a system that depends on unpaid or underpaid labor.
The toll of that responsibility is not theoretical. It is measurable.
Roughly one in four U.S. adults serves as a caregiver, contributing an estimated 50 billion hours of unpaid care each year—labor valued at more than $1 trillion annually. But for those caring for individuals with significant, lifelong disabilities, the demands are often more intensive, more isolating, and more enduring than typical caregiving roles.
Research has consistently shown that long-term caregivers experience higher rates of chronic illness, depression, and compromised immune function. Studies also indicate that caregivers, particularly those under sustained physical and emotional strain, face an increased risk of premature death compared to non-caregivers.
Yet despite the scale of the issue, caregiver health outcomes remain largely absent from federal policy discussions.
Instead, recent rhetoric at the national level has increasingly framed disability services and caregiver support through a fiscal lens—emphasizing cost containment, fraud prevention, and program efficiency. While oversight is a necessary component of any public system, advocates warn that this framing risks overlooking the foundational reality: for many families, these services are not discretionary; they are the infrastructure that makes daily life possible.
“There’s a disconnect between how these programs are discussed and how they function in real life,” advocates and researchers say, particularly as access to services remains uneven and the caregiving workforce unstable. “For many families, this is not a cost issue. It’s a survival issue.” Supporting that reality, AARP notes: “Family caregivers are the backbone of our long-term care system, yet they often lack the support they need.”
That disconnect becomes most visible when families begin planning for the future.
In surveys of caregivers for adults with disabilities, a majority report deep concern about long-term care. More than two-thirds say they worry about what will happen when they are no longer able to provide support. For many, the planning process involves navigating a fragmented system of legal structures, financial tools, and housing options—often without centralized guidance.
The result is a growing sense that the burden of long-term planning has shifted almost entirely onto families themselves.
Some are responding by organizing collectively—pooling resources to create shared housing, advocating for policy changes, or partnering with developers and nonprofits to establish new residential models. Others are turning to financial planning strategies, including special needs trusts and long-term care funding mechanisms, to create a degree of security where public systems fall short.
Still, these solutions are not scalable at the level required.
Without broader federal and state investment in workforce development, housing infrastructure, and sustainable service delivery models, experts warn that the gap between need and availability will continue to widen—particularly as the current generation of caregivers ages.
What emerges is a system at a crossroads: one where innovation is happening, but not yet at scale; where families are building solutions, but not all families have the resources to do so; and where policy conversations have yet to fully grapple with the long-term implications of inaction.
At its core, the issue is not just about housing or services. It is about continuity of care, of dignity, and of stability across a lifetime.
And for many families, the question remains unresolved: If the system is not built to carry this forward, who will?