The Minister of Health of Denmark has boasted recently that by 2030 the government will have achieved its goal of no babies being born with Down syndrome. This will be achieved not by research designed to override the effects of an extra 21st chromosome. That would be a noble goal.
No, alas, it will be achieved with the blunt instruments of early detection and subsequent abortion. (I have no idea what the Minister will do when he encounters, as he is sure to do at some point, parents who want their baby regardless of the Down syndrome.)
And Sweden’s health system was profiled today in the Wall Street Journal as a cautionary tale for Obamacare. If a Swedish resident is diagnosed with an aggressive tumor today, he or she may have to wait nine months before beginning chemo and radiation to treat it. This insurance costs Swede an average of $20,000 per family per year, yet many are willing to fork over another $12,000 per year to purchase private health insurance in order to feel reasonably certain of receiving the care they need.
It’s the tendency of governments when they take something over to promise everyone everything. But they can’t deliver that, or even come close, and so they do something we in the disability field are well acquainted with: they ration services via wait time.
That’s why tens of thousands of Texans with intellectual disabilities have been languishing on the Home & Community-Based Services lists for a decade or even longer. (At one point one of our residents received a letter informing him he could expect services no later than age 56. He was 24 at the time!)
According to The Coalition for Community Choice, 4,902,835 people with intellectual disabilities (IDs) currently reside in the United States. Of those, 1,389,611, or 29%, currently live in an out-of-home residential setting. That might be a three-person HSC home, an Intermediate Care Facility home of four, six, eight, 16, or 32 residents, in a foster-care situation, in a private boarding facility, or in a regular nursing home.
Nearly a million (852,923) of the remaining 3,513,224 still living at home with a relative or other caregiver are already 60 years of age or older. If they are living with parents, those parents have already exceeded the actuarial estimates for their life spans. These people face a very uncertain future. (Over the years we have met families like this and, incredibly, most of them have no plans at all for their disabled adult child in place to assure their care when the parents die.)
Those million senior citizens with IDs represent only the most urgent aspect of this crisis. After them come 2,242,484 younger people with IDs needing a place to live now or in the foreseeable future.
And how many new residential slots, from all the different programs, were created and funded from 1994 through 2011?
Fewer than one quarter of a million–244,195 to be exact.
What are the prospects today for doing better than that hopelessly inadequate response? The economy is weaker than during the 15 years referenced above. If available monies were divvied up among all who needed them, it would amount to a pittance for each.
But there is hope, and there are solutions. Just as Jerry and I looked around 30 years ago and said, “Nope, not for our kid,” families all across the country are coming together to seek solutions. FRED (Farms and Ranches Enabling people with Disabilities) has a saying: “For a family with a child with autism, tomorrow is already yesterday.”
So moms and dads and sisters and brothers are making plans for their children. They know their children and what kind of life will be rewarding and helpful for them. Families particularly of children with autism are convinced that farm and ranch style settings offer the greatest hope for a good life for their child.
And how does our government respond to this initiative? By passing rules that ensure that tax dollars intended for care of their children will never be disbursed to such a “facility,” because the government is certain that living on a farm or ranch with other people with disabilities is prima facie bad and wrong.
This is why the Coalition for Community Choice will bring together all the ID communities–autism spectrum, Down syndrome, and others– (and hopefully their advocacy groups, such as Autism Speaks, the National Down Syndrome Congress, and the National Down Syndrome Society) to press to change the Center for Medicare and Medicaid Service’s rules that would bar clients of private, rural, or enclave communities from receiving services and support.
Truly, a good start would be for people to get out of their offices to go and visit place like Down Home Ranch and hundreds of other communities around the community and world.
Our doors are open, and you don’t need an appointment. Tomorrow I’ll tell you what you’ll see.