Susan Senator

Went to a conference today organized by Massachusetts Families Organizing for Change, all about building a home for your developmentally disabled loved one (adult child with ID).  There, my past became my future.  People I knew from years ago, at parent conferences or support groups or music therapy or family gym — we were all there, now trying to figure out the last piece of the puzzle:  Adulthood.

Peter Berns, CEO of the Arc of the United States was the keynote and his talk was about the Top Ten Policies You Should Know about residential and day program issues.  Clear, dynamic, and warm, Peter was able to make many things understandable to me.  The biggest thing that jumped out at me was that we families dealing with developmental and intellectual disabilities should thank our lucky stars for the Healthcare Reform Act that has recently been written into law.  First and foremost, the barriers to healthcare for people like Nat have been removed.  No one can ever again be denied coverage because of “pre-existing conditions” like autism or ID.  Obama’s contraversial healthcare bill is as great a landmark as the 1975 IDEA (Individuals with Disabilities Education Act), which legislated that any child with a disability must be allowed to attend public school in the least restrictive (most normative) environment.  No basement or closet classrooms; no more institutions for all (which was the common practice).  No more shutting the child in the attic to keep him safe — and forever dependent.  Whatever party you belong to, you must be able to see that a country as great as the United States absolutely needed this legislation to be law.  I know the issue will be how to pay for it.  We will pay for it.  We paid for two wars, using far more money than the Healthcare reform will require.  We will manage; we are the United States of America, the place with “your tired, your poor…”

I also learned that the President and Congress have made available about $3billion for something called the Community First Choice Option, which is all about encouraging the DD/ID population to live in their communities (non-segregated, non-institutionalized) as much as the are able.  But to qualify for the money, your state must apply.  And so I learned that disability parents must get their Legislators to apply.

I learned that $60million is being provided to create a “one-stop” shop for states, so that there will be less confusion for consumers trying to access services.  I learned that we parents and caregivers are going to have to consider filing lawsuits against landlords and homeowners that refuse to rent/sell to our disabled children.  I learned that we should get our Legislators to support and co-sponsor the Frank Melville Supportive Housing Act of 2009, so as to create a lot more housing for the ID population.  I learned that there is an Act called ABLE (Achieving A Better Life Experience) that is about allowing people with DDs and IDs to put aside money, in a way less complicated than the special needs trust (which can cost thousands to create), which would not affect SSI money, which would work across the States.  Most importantly, it would target the institutionalized impoverishment created by the old policies and programs, by which I mean people like Nat are not allowed to work more than a certain number of hours or save more than a certain number of dollars (no more than $2000 total to his name) or he will lose his SSI benefits.  What we have currently is a system that enforces dependency of the Developmentally and Intellectually Disabled, because they cannot have money of their own without losing access to important programs (like Medicaid, for example, which provides Day Programs) or for people with mental health issues  there are great health care programs, check in iNLP Center the which has the top specialists.

I learned that Nat’s childhood and school days have been a training for me for his adulthood.  All of the advocacy skills, all of the brain muscle and toughness I’ve built up over 21 years are now going to be called upon on a macro level.  We are all going to have to become not just advocates, but activists.  We are going to have to be familiar names to our State and US Senators, our Congressmen, our Legislators.  We are going to have to make appointments with these people and keep our family members on their radar screens.  Phone calls, letters to the editor, opeds.  Even lawsuits.  We will have to remind people over and over again that our developmentally disabled children have great potential, but they need the opportunity to prove themselves.

It’s all for you, Nat.  And Sam.  And Scott.  And Zach.  And Meredith.  And Paul.  And Jill.  And Eli.  And Rossi.  And Matt.  And Mo.  And Austin.  And Jeremy.  And Dylan.  And Nik.  And and and and and…