The Arc, a national organization for people with intellectual and developmental disabilities, recently released A Report on Family and Individual Needs for Disability Supports (FINDS) for 2011, and it's not pretty. 50 years ago, John F. Kennedy said “those of us who have seen children live in the shadows know that a country as rich as ours cannot possibly justify this neglect.” And after 50 years we now have a group of politicians determined to push these children and adults back into the shadows, and deprive them of the chance to live a happy, productive life.
You can read the whole FINDS report here. There's a summary of top findings and a complete report with tables, etc. There's a lot of information here covering schooling, home care and employment for people with I/DD, and how budget cuts are destroying services that families rely on. What it comes down to:
Despite gains in many areas, overall the results from the FINDS survey show that our efforts as a nation have fallen short of the vision of an America where people with intellectual and developmental disabilities are accepted and have the supports they need to live to their full potential in the community.
I won't go into all of the findings here--I truly encourage you to read the report, especially if you are not familiar with the myriad problems that confront I/DD individuals and their families. However, with the threat of medicaid cuts looming on the national level and states moving to slash their medicaid funding, I'd like to point out some of the more startling statistics:
• More than 75% of families report they can’t find afterschool care,
non-institutional community services, trained reliable home care
providers, summer care, residential, respite and other services.
• 62% of families report that services are being cut in the community,
limiting or eliminating access to community life and opportunities
for their family member with I/DD.
• One-third (32%) of parents/caregivers report that they are on
waiting lists for government funded services, with an average wait
of more than five years. They are waiting for personal assistance,
respite, housing, therapy, employment supports, transportation and more
• 47% of families report that they are paying more for care out of
pocket.
• For most families (63%), the money comes from the personal
income or savings of the parent/caregiver or other family sources.
• 80% of families report that they don’t have enough money to pay
for the support or care their loved one needs.
And now, for the real heartbreaking stuff. Are you a parent of a "typical" child? If you die, you are probably pretty certain that your child, barring unforeseen circumstances, will be able to find adequate shelter and food after you've passed on. With I/DD children and adults, the future is nothing but unforeseen circumstances.
Nationally, more than 700,000 people with I/DD are living with caregivers who are 60 years or older. With 58% of family caregivers between the ages of 51 to 79, where will the individual with I/DD live and who will support them when their family members are no longer able to do so? Housing is unaffordable to individuals who have no outside income or who rely on safety net programs to live. Outside services and supports are hard to find to help people live in the community. Unfortunately, most families don’t have a plan.
• 61% of parents/caregivers tell us they worry that the person they
support might have to go live somewhere they don’t want to.
• 62% of parents/caregivers say they don’t have a plan for where the
person they support will live when the parent/caregiver gets older.
• 59% report they don’t have enough information to make good
choices about housing options.
• 65% report that they don’t have enough help in planning for the future.
There's a heartbreaking sidebar story in the report about Charlotte and David. David has MR, and has been working in the community at McDonalds for 30 years. His mother is 94 and hoping to find a place for him to live, but the DDR in their state is refusing new applicants for housing because of a lack of funding. Here are people who "have contributed to their community for decades and taken care of themselves and done everything right. And this is what they’re left with.” This goes beyond employment opportunities, education and training. This is denying individuals that can not fend for themselves shelter and food , and in some cases basic hygiene.
And austerity measures promise to take away even more. Here's what the Ryan budget has in store should it ever pass (and especially note the issues regarding medicaid):
• Cut more than $770 billion over the next ten years from the Medicaid program — the federal/state program that provides the majority of funding for services for people with I/DD — while also capping future expenditures.
• Cut an additional $2.1 trillion dollars from Medicare, low-income
housing, education funding, food stamps and other programs of
importance to low and moderate income families, including people
with I/DD.
• Repeal the new healthcare reform law known as the Patient Protection and Affordable Care Act of 2010, including provisions that prevent people with disabilities from being denied health insurance coverage, provide for a new insurance program for long term services and supports, and provide incentives for states to expand
home and community-based services.
There has been progress made over the years for individuals with I/DD. Most people now stay in their communities rather than be shipped off to institutions, which is excellent news, considering the state of some institutions for the I/DD. While not perfect, I/DD children are now allowed to attend public school and receive an education. And those I/DD adults who can find employment enjoy their work (though they are often not paid even minimum wage). This is indeed a far cry from the past in which I/DD people were left to institutional care, refused public schooling, and kept out of sight. BUT we have a long way to go before people with intellectual and developmental disabilities have true security and opportunity in their lives.
To that end, the last part of the FINDS report is a call to action! Once again, I urge you to read this section and find out what you can do to help I/DD individuals, whether you're a parent, caregiver, employer, legislator, friend, or citizen! You can also check out The Arc's national legislative agenda here. By strengthening the most vulnerable in our society we strengthen our society as a whole. I truly believe this, and can only hope for understanding and acceptance and do my best to advocate for I/DD individuals in my community and beyond.
Can we open up the hearts and minds of the American people so they see the need to fully include people with intellectual disabilities in schools, the marketplace, places of worship, our clubs and recreational programs?
Together, we can.
I am the mother of a wonderful, funny, friendly seven year-old boy with Autism Spectrum Disorder and Mild/Moderate Intellectual Disability.