Why Disability Parents’ Job is Not to Die

“I can’t die.”

It is a statement I hear with increasing frequency in counseling sessions with parents of adult children with autism and other developmental disabilities (DD). It is not said for dramatic effect. It is not metaphorical. It is an expression of profound fear—an acknowledgment that, in the absence of reliable long-term systems of care, many parents believe their continued survival is the only safeguard their child has.

In therapy, mothers and fathers confide their daily challenges. They talk about searching for a skilled occupational therapist to address fine motor delays. They describe the difficulty of finding a babysitter equipped to manage behavioral complexities so they can have a rare evening out. They recount exhausting battles with school districts to ensure their child’s Individualized Education Plan (IEP) is properly implemented. As their children transition into adulthood, the concerns shift to securing funding, job coaching, and sustainable employment opportunities.

Each of these stressors is significant. Yet none compare to the overarching fear of what will happen when they are no longer here.

Services for children with autism and developmental disabilities are substantially more robust than those available to adults. When individuals age out of school-based supports, families frequently encounter a steep service cliff. Residential options narrow.

Vocational programs are practically non-existent. Behavioral health resources become harder to secure—particularly for individuals with co-occurring mental health needs. In many cases, parents remain the primary—and sometimes sole—providers of care well into their own later years.

Recent reporting by WCPO highlighted the scope of this concern locally: nearly 12,000 individuals with developmental disabilities in Hamilton, Butler, Warren, and Clermont counties have a caregiver over the age of 60. That statistic underscores a looming crisis. Aging caregivers are supporting aging adult children, often without a clear contingency plan if something happens to them.

There are dedicated organizations in the Cincinnati area working to address these gaps. Agencies like LADD and EmpowerMe Living have invested in residential and community-based supports. Newer initiatives, such as Hope Cottage and housing developments supported by Cincy Hat Foundation, founded by The Bengals’ Ted Karras, represent important steps forward. These programs are meaningful. They are well-intentioned. They are necessary.

But they are not enough.

Demand dramatically outpaces supply. Affordable, long-term residential placements remain scarce. Agencies struggle to recruit and retain direct support professionals because wages often fail to meet living standards. As a result, turnover is high, of care is disrupted, and families lose confidence in the stability of available systems. For adults with autism or DD who also experience significant behavioral or mental health challenges, options shrink even further; many programs lack the staffing ratios or clinical capacity to serve them.

And so, parents calculate what feels like the only reliable solution: they must outlive their child.

“I can’t die” becomes less a statement of fear and more a survival strategy—a belief that their physical presence is the final, irreplaceable layer of protection. Until communities, funding mechanisms, and policy frameworks evolve to offer durable, lifelong supports, many families will continue to carry this burden alone.

For them, mortality is not an abstract inevitability. It is a threat to their child’s safety.

By Tom Galperin, Galperin Autism Consulting

To learn more about Galperin Autism Consulting, go to

www.galperinautismconsulting.com.