{"id":3705,"date":"2014-02-25T21:18:23","date_gmt":"2014-02-26T02:18:23","guid":{"rendered":"http:\/\/susansenator.com\/blog\/?p=3705"},"modified":"2014-02-25T21:23:00","modified_gmt":"2014-02-26T02:23:00","slug":"good-autism-housing-takes-good-legislation-h-3364","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2014\/02\/good-autism-housing-takes-good-legislation-h-3364\/","title":{"rendered":"Good Autism Housing Takes Good Legislation: H.3364"},"content":{"rendered":"

Today at the Massachusetts State House there was a hearing on bill H. 3364, “An Act to promote housing creation for persons with disabilities.” The hearing room was full — although some of the audience were there for a different bill — and I was heartened by the size of the group. We were all parents but most also had a title and an autism organization they were representing. I was just me. The Autism Commission<\/a> and Asperger’s Association of New England<\/a> were represented, as was Autism Housing Pathways<\/a>. Former State Rep Barbara L’Italien<\/a> was there, and she is now (thankfully) running for Senator! Leslie Long and Russ Kenn were there from Autism Speaks.<\/p>\n

Leslie presented Autism Speaks’ recent research and housing survey <\/a>of people with autism and their families and all issues pertaining to housing, including their perceptions of what is out there, how to obtain funding, how to get help and support, etc. Something like “10,000 responses, including close to 400 from individuals on the spectrum,” were gathered, according to AS. A pretty impressive sample.\u00a0 Even though I’ve said before that I don’t like the negative, autism-is-like-prison rhetoric AS sometimes uses to gain the attention of the media and donors, and I do wish that they would put even more of the millions they are already putting directly into family supports, I think it is clear that AS definitely is doing some very strong advocacy on behalf of autistics and their families. They may be very heavy-handed and frankly a bit Gothic in their representation of autism, but resources for people on the Spectrum and advocacy at the State Houses may help balance things out a bit. I hope so. We can’t all agree all the time on everything, right?<\/p>\n

Anyway, here is my testimony:<\/strong><\/p>\n

When my autistic son Nat was 11 we had to seriously consider placing him in a residential school setting. Things had gotten pretty severe in our house. I had a 2 year old and an 8 year old. It was late wintertime, 13 years ago. Nat had attacked me, clawed at me, while I was standing at a T stop holding the baby in one arm, the stroller looped over the other. I did not know how to stop him. I just remember crying out to him to calm down while the crowd on the platform stared, puzzled and stony-faced.<\/p>\n

Somehow, that time, it ended okay. No one was hurt, other than my scratches. We got home and even though every one of my babysitters had quit by then, we made it through another day, another week. Spring came, along with a new medication \u2013 which helped. We did not end up \u201cgoing residential\u201d as autism parents call it.\u00a0 But we knew we could not put it off forever.<\/p>\n

We held on for another 6 years, with Nat improving and then losing it, one step forward, two steps back. At 17 he moved out to his school in Randolph, leaving me behind with a broken heart and his little brother with a diagnosis of Post Traumatic Stress Disorder.<\/p>\n

It was the best thing for Nat. He learned how to live with others, because he finally had the structure and support he needed to be comfortable with the world around him. The calm that this home created for him enabled him to grow, at last, and be able to take in information from the world around him. He blossomed, and we healed.<\/p>\n

Flash forward to today. At 24 Nat is in a group home near us, one that was put together with input from the residents\u2019 families. Nat has a part-time job at Shaw\u2019s working the shopping carts and is a happy, productive guy.\u00a0 The 4 roommates have similar challenges, similar interests. There have been some bumps in the road but the house is doing well.<\/p>\n

I\u2019m writing a book about autism adulthood. I have interviewed so many parents like me, who have similarly challenged kids but cannot manage anything like what Nat has. They do not have a plan for their autistic adult child\u2019s future. Like Karen, whose son sometimes needs to be restrained by 5 people. But because he passed the MCAS, supported housing is not an option. Or Lynn, or Fran. Their grown children not quite severe enough, yet nowhere near being able to live on their own.<\/p>\n

No one has ever shown them how to maximize the funding streams \u2013 as if there were really any that are adequate for living in Massachusetts. If you\u2019re lucky, your school system has discussed Transition to 22 at your team meeting. But will the school people know about housing supports?\u00a0 Get on the Section 8 waiting list, we\u2019re told. Section 8, with a ten-year waiting list.\u00a0 How about starting a home yourself? Got a spare $100,000? How about getting your town interested in more supported housing? Ever hear of NIMBY? How about Adult Foster Care?\u00a0 What the heck is that?<\/p>\n

How can you find out about any of that if you are taking care of a disabled adult and can barely leave your house, let alone attend a housing workshop?\u00a0 How do you find other families with an adult child like yours, who live in the same difficult situations?<\/p>\n

They did not have the ability to get their children residential supports during the school years \u2013 not because their children didn\u2019t need those supports but because there were just too many other things to manage.\u00a0 Full-time jobs. Other kids. Intractable or broke school systems.<\/p>\n

And if they could not manage getting residential placement when their children were still in school, there was no way there would be anything like that available to them in adulthood, where there are no entitlements beyond DayHab. Don\u2019t get me started about DayHabs, which are the institutions of today.<\/p>\n

So you have parents who are aging, and with adult children living at home, with the same challenges Nat had at 11, but now with adult bodies. They probably have some supports during the day, but what happens when the staff leave?<\/p>\n

These are families living scared, living moment-to-moment.<\/p>\n

What will happen when the parents die? There is no clear answer then, either. The state takes over, somehow.\u00a0 That\u2019s what we all tell each other.<\/p>\n

Why does the state take over at that miserable point, but offers little help before that? Why do we go from a strong public education experience, to the dead end of these adults living at home? How does that make sense from a policy or a humane perspective?<\/p>\n

Something\u2019s gotta give. Please give a favorable recommendation to this bill.<\/p>\n

Thank you.<\/p>\n

Susan Senator<\/p><\/blockquote>\n

And here are the Talking Points for the bill:<\/strong><\/p>\n

\n

H. 3364 <\/span><\/b><\/p>\n

An Act to promote housing creation for persons with disabilities<\/span><\/b><\/p>\n

The bill is sponsored by Rep. Jason Lewis of Winchester[1]<\/a>, and is intended to increase housing production for individuals with developmental disabilities by doing four things:<\/p>\n