Navigating future planning: Aging and intellectual and developmental disabilities

In a raw and vulnerable moment, a patient’s mother confided in me, “I’m deeply concerned about who will care for my son when I’m no longer here.” As a primary care physician immersed in the immediacy of daily tasks like medication refills and new symptoms, this encounter resonated deeply with me.

My clinic (called the Transition Medicine Clinic) cares for adults with intellectual and developmental disabilities (IDD), including conditions like autism, Down syndrome, cerebral palsy and spina bifida, so there are certainly a lot of ongoing medical needs to consider and manage. But underlying these day-to-day and week-to-week issues are much deeper concerns about the future. Where will my loved one live? Who will manage their finances? Who will guide them in making difficult decisions?

That these tough questions exist is a positive sign. Over the last several decades, life expectancy for individuals with IDD has increased, and for many with mild intellectual disabilities, is not far from the general population. More and more individuals with IDD reside in the community, typically with the support of family or other trusted caregivers.

The bittersweet reality of these welcome advances is that individuals with IDD are more likely to outlive their caregivers, particularly if there is a larger age gap (e.g. grandparent as caregiver). When the primary source of support is no longer able to provide care (either due to death or disability), it can trigger a potential crisis if there is not already a plan in place, especially if this scenario arises suddenly. Understandably, it is difficult to discuss scenarios involving one’s mortality, let alone plan for the implications that it will have on the life of a loved one with IDD.

There are currently no policies in place that automatically prompt families to consider these issues. Medical care is often fragmented to begin with, and the care of individuals with IDD is not a required part of medical training. It should not come as a surprise that the majority of physicians don’t feel confident in providing care to individuals with disabilities. Even for families who are plugged into the most comprehensive state-based programs, there is no mandated touch point on these crucial issues.

As healthcare professionals, all of us need to be aware of these realities and the concerns they bring, even (or especially) when they are not explicitly vocalized. Providing a safe space to discuss these vulnerable issues is invaluable and can be the first step toward making a plan.

It is also important to be familiar with the local resources and sources of support, or even better, refer to a social worker versed in these issues. On a broader scale, enhanced support systems for families are linked to increased planning behaviors and reduced caregiver burnout. They need tools to facilitate planning. As part of a multi-institutional PCORI grant, the Transition Medicine Clinic is evaluating one such tool: a web-based platform called Map Our Life, which was designed with direct input from caregivers of individuals with IDD. This website will help caregivers go through the process of planning for the future and be a source of resources and support.

As a parent myself, I have a hard time thinking about a day when I won’t be present to love, protect and support my children. But that same love gives us the strength to ensure, to the best of our abilities, that our support will not end with our physical presence. I hope that our collective efforts as healthcare professionals, strengthened by evidence-based tools, will support the dignity of all individuals with IDD as they grow older.

By Dr. John Berens, assistant professor, Center for Transition Medicine, Department of Medicine, Baylor College of Medicine