What will happen to my disabled son when I can no longer care for him, or ultimately when I die? That question hit me hard two years ago when I received a call from my husband’s work telling me he had collapsed and was headed to the ER. As I rushed to meet him, my concern for his health was quickly joined by concern for our 35-year-old son Andrew, a person with autism, a type of intellectual and developmental disability. Despite his desire to live outside our home, he has few residential choices in Delaware, so he still lives with us. In that moment, I was forced to deal with this reality; one I share with most members of A-Team Delaware, an advocacy group for people with and families of IDD that I am part of.

November is National Family Caregiver Awareness Month, so it is a fitting time to look at this concern. Let’s start with facts. Roughly 75% of adults with IDD in Delaware still live with and are cared for at home by their parents, 37% of these live with parents ages 41-59, and 28% with parents over age 60. Additionally, there is a shortage of workers trained to provide the care or support services needed when parents can no longer provide this care or may need services themselves. Finally, a trend to deinstitutionalize or support living in smaller settings is increasing the need for trained workers/caregivers and the number of affordable places to live. This leaves few residential options for people with IDD other than remaining at home.

If we do nothing, we can see what the future holds for them. Steeped with good intentions, deinstitutionalization of people with mental illness began in the ’60s, and with it, the political promise for funding to build and run small community mental health centers. These centers were supposed to provide an infrastructure of supports to replace what they were receiving in an institution. This promise never materialized. Today we see the results. The population is indeed living in the community. But without the service infrastructure to support them, how does that look? As reported recently in the New York Times: “Over time, this has resulted in hundreds of thousands of Americans with mental illness left to toggle between living in homeless shelters, jails or the streets. The [mentally ill] are victims of a mental health system that is not designed to meet their needs – and of a society that has proved mostly indifferent to their plight.”  

Similarly, Delaware falls seriously short of having an infrastructure to meet the needs of the IDD population. Having people live at home and dependent on their parents is not a long-term solution. A-Team believes the time is now to develop an infrastructure that includes a full set of housing options and services for citizens with IDD whose residential needs can range from drop-in to 24-hour support. How can we accomplish this? 

A-Team Delaware was a major force in passing the McNesby Act, the first legislation in the country to commit to fully funding support services for adults with IDD. However, legislators must decide to allocate budget dollars every year. It is imperative this money is allocated. Additionally, Medicaid dollars used for home- and community-based services must become more flexible in allowing people to use those dollars in residential settings of choice. Finally, we need a full range of affordable housing options to meet the needs of all, ensuring that the street is not the only option. Indifference is not and cannot be the Delaware way.

Inclusive living is a vision worth fighting for. However, to quote Will Rogers: “A vision without a proper plan for execution is just a hallucination.” Gov.-elect Matt Meyer stated at a recent Ability Network of Delaware roundtable discussion on the needs of the disabled: “This is where it gets real. This is about resources. And allocating resources is the most important thing. It is about our state priorities.” A-Team Delaware commits to working with the governor-elect and government officials to give Andrew and citizens like him a place in Delaware ... to make their having a home in Delaware a priority, and a reality.