Considering The True Underserved Population

So many of the public pronouncements from government organizations, service providers, CCBs (including Imagine!) talk about how we serve “Colorado’s most vulnerable citizens,” meaning, obviously, people with developmental and cognitive disabilities.

I would argue that there is another group of vulnerable citizens, a group of people who are taking care of individuals with developmental disabilities, whom we are doing a poor job of serving: parents of people with developmental disabilities.

According to the Coleman’s Institute’s The State of the State in Developmental Disabilities 2008, “. . . 2.83 million of the 4.69 million persons with intellectual and developmental disabilities in the U.S. population in 2006 were receiving residential care from family caregivers. This “informal” system of residential care served about five times the number of persons served by the formal out-of-home residential care system.”

And what have we done to serve this population of caregivers? Sadly, not enough. As someone who has been in the field of developmental disabilities for some time, I find this quite disturbing.

When I was in school, we were taught a successful service for individuals with developmental disabilities revolved around providing them with the opportunity to live on their own, with support. Slowly but surely, the way we fund and provide services made a 180 degree turn, and now success is defined as keeping the individuals at home with family members for as long as possible.

Now, in another blog post I may debate the merits of that turn, but it has clearly happened, and as a society we have not stepped up to the plate to provide the necessary resources to those families who have taken on the task of caring for their adult child with developmental disabilities. And I’m not even talking about the looming specter of aging caregivers facing this nation, in this post, anyway. (In Colorado alone, 9,000 + people with developmental or cognitive disabilities live with caregivers 60 years or older – and that number is 716,000 across the nation – frightening!)

Anyone who has taken care of a loved one with a developmental knows that it is not easy, and can take a significant emotional and economic toll. So why have we been so bad at supporting these families who have made the tough decisions and chosen to care for their loved ones well into adulthood? Why do we expect these parents to be responsible for their adult children for so long?

Before you answer the above questions, think about this: pretend you have an adult child who goes down a bad path, commits a crime, and winds up going to prison. Does the State make you pay to imprison the child? Does the government say “you take care of him (or her)” and make the child stay with you? No, of course not. As a society we have collectively agreed to shoulder the financial burden of incarcerating those who choose not to follow our laws.

And yet, what do we do for those families who chose out of conscience to do the “right” thing? The ones who bear the significant costs of caring for their child, who, through no fault of his or her own, happens to have a developmental disability? Do we agree to shoulder that burden? Not even close. Understand, I’m not suggesting we incarcerate people with developmental disabilities to access government support. Rather, I’m just saying we might want to look at our priorities.

So to recap: you have a kid who grows up, goes bad, and goes to prison, and we sing “Come Together” by the Beatles.



Alternatively, you have an adult child with a developmental disability, who could contribute to society if given the proper tools, and instead we make the family sing “All By Myself” by Eric Carmen. Over and over.



Does that seem right? Even rational?

I don’t think so.

Then again, what do I know?