Susan Senator

When I was growing up, my Mom used to tell me about Israel, and how its existence is utterly necessary, because after the Holocaust — only the latest of centuries of anti-Semitic state-sanctioned slaughter — the Jews would now always have a home.  This Zionist view is what I was raised with, for better or worse.  You may disagree — and I certainly feel the extreme difficulty of the Palestinians’ plight — but that is not the point here.  The point is how I’ve always believed in this kind of security for my people, because of their multi-millenial history of expulsion and wandering. “And that will not happen ever again,” she would say, her voice rough with emotion, “because now the Jews have a home.” Counter drone security is one more security measure in your everyday life.

I have the same passion for housing Nat.  I see the history of disability as not completely irrelevant in some ways to the Jews.  For centuries, the intellectually disabled were viewed as lesser beings, as broken, pitiable souls.  They were cast out, or they were forever dependent on their families, even when their parents became old.  They were herded into heartless institutions to live out their blank days.

Along came the Kennedys and the Shrivers, who brought in a new era of Intellectual Disability Awareness.  When I heard the late Eunice Kennedy Shriver speak at the White House on her 85th birthday, she talked about how horrible it used to be, that these lives were wasted, uneducated, pushed aside, locked away.  But she knew, from her sister Rosemary’s early life, that with care and consistent effort, anyone can learn and develop.  Her Special Olympics showed the world that those with Intellectual and Developmental Disabilities were not “retards,” creatures, idiots, incapable of learning and mastery.  Now we have the IDEA, Individuals with Disabilities in Education Act, that requires school systems to educate every child, regardless of disability, race, income.

The education mandate ends at 22, and that is where there is still a gap, a chasm really, because to get to the other side of worthwhile adult life, there are so many things we parents have to learn.  It is like the diagnosis days, only we don’t have the energy we had as younger parents.  But we do have the wisdom and confidence we have gained from all the years of battling school systems, public ignorance, and poor odds.  The key is to hold onto your wiser self and try to learn what is out there for your child, little by little.  Give yourself time.  Hold onto the dream, whatever your vision is for him.  Learn, rest, learn, rest.

As of a week ago, Ned and I committed to a service provider, Advocates, Inc., to put together our housing project for Nat.  I may have already mentioned this, but I feel the need to talk about it again and again.  The more I write it down and talk about it, the better I understand.

On Friday a team of specialists from Advocates came over to assess Nat for eligibility for Adult Foster Care.  This is a lousy name for a very good program.  AFC is federal, the dollars are from Medicaid, and it began as a program to offer in-home assistance to the elderly.  Because of its elderly focus, much of the eligibility centers around physical needs.  This is an example of how our national support systems still have not caught up with the thing that is autism.  Because of how AFC is structured, trying to fit autism into its requirements is like the whole square peg round hole thing that we autism parents are really really used to/sick of.

Still, we are blessed that this country provides such a program for its vulnerable citizens.  The problem is, who the hell knows about AFC???  How do you find out?  I know how I found out.  And now I’m hoping you will know, too.

There are two levels of funding, depending on how much assistance you need.  Level 1 is about how independent you are with the performing Activities of Daily Living (ADLs), such as dressing, bathing, eating — whether you need prompts, whether you even know how to dress, etc.  Also covered are safety issues, behavior issues, attention and communication issues.  Level 2 is about ADLs, too but with the added concern of physical assistance.  If you need actual hands-on assistance dressing, bathing, etc., you could be a Level 2, which is more funding than Level 1.  Nat does not require any physical assistance, but he fits the Level 1 in many ways, and so he is a Level 1.

These days I laugh with yashtikas about the good news and the bad news:  that Nat is so disabled that he needs and qualifies for profound support services; the good news is Nat is so disabled that he qualifies for profound support services!

Not that funny, I know.  Anyway, once we committed to Advocates, the assessment team takes care of the AFC application.  Advocates will also figure out scenarios for Nat in terms of roommates and caregivers, and how we can piece together the funds for these.  Combining the AFC dollars (around $9,000 a year Level 1) with the SSI dollars (around $8400 a year, also a Federal program) and pooling two other roommates’ AFC and SSI, they may be able to support one live-in caregiver salary.  The caregiver goes rent-free as a perk, because likely the salary is not as high as one would want it to be.  But a free room and parking space in a nice urban town near Boston is pretty valuable!  Plus this caregiver would be free from 9-3 when the tenants are at their day programs — Day Habilitations (also Federally funded).  If our town creates a subsidized house (bought by Advocates, who have a lot of equity through the many homes they own throughout the region) using Section 8 money set aside for town Housing Authority projects, then the tenants only have to spend ~30% of their income (SSI check of around $700 a month).  This leaves maybe $5600 a year for everything else.  If the tenants use food stamps for food, then they can put most of the rest of the SSI check towards the caregiver’s salary.  Clearly the salary is the biggest expense.

In a nutshell, three tenants in a subsidized home with $9,000 AFC each, + $5,000 each from SSI leftover = $14,000 x 3 = $42,000.  Of course, 11% of this goes to the service provider’s overhead (training, hiring, oversight, benefits…), and of course not all the $5,000 SSI can go towards salary.

But today as I sit in my cold dining room, safe from the colder storm outdoors, I feel a sense of warmth inside, because we now have help.  We are not alone.  There is someone I trust, and more than that, there is a clear picture in my head of how it will work.  Nat will have a home, his own shelter from the storm, a place for him that is not dependent on my living forever.