Susan's Blog

Tuesday, February 25, 2014

Good Autism Housing Takes Good Legislation: H.3364

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 and Asperger’s Association of New England were represented, as was Autism Housing Pathways. Former State Rep Barbara L’Italien was there, and she is now (thankfully) running for Senator! Leslie Long and Russ Kenn were there from Autism Speaks.

Leslie presented Autism Speaks’ recent research and housing survey 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.  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?

Anyway, here is my testimony:

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.

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 – which helped. We did not end up “going residential” as autism parents call it.  But we knew we could not put it off forever.

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.

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.

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

I’m 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’s 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.

No one has ever shown them how to maximize the funding streams – as if there were really any that are adequate for living in Massachusetts. If you’re lucky, your school system has discussed Transition to 22 at your team meeting. But will the school people know about housing supports?  Get on the Section 8 waiting list, we’re told. Section 8, with a ten-year waiting list.  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?  What the heck is that?

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?  How do you find other families with an adult child like yours, who live in the same difficult situations?

They did not have the ability to get their children residential supports during the school years – not because their children didn’t need those supports but because there were just too many other things to manage.  Full-time jobs. Other kids. Intractable or broke school systems.

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’t get me started about DayHabs, which are the institutions of today.

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?

These are families living scared, living moment-to-moment.

What will happen when the parents die? There is no clear answer then, either. The state takes over, somehow.  That’s what we all tell each other.

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?

Something’s gotta give. Please give a favorable recommendation to this bill.

Thank you.

Susan Senator

And here are the Talking Points for the bill:

H. 3364

An Act to promote housing creation for persons with disabilities

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

  • Allow a mechanism for families to open up Mass. tax-advantaged savings accounts that can be used for housing expenses for a family member with a disability; these accounts would be run through MassHousing.
    • This is similar to what would be accomplished by the federal ABLE act, with state tax benefits only, and focused on housing.
  • Increase and stabilize funding for Individual Development Accounts by funding it through a tax credit instead of a budget line item;
    • This item has been cut from $700,000 to $50,000 in recent years. Oregon, using a tax credit, funded their program at $10M last year.
  • Make housing projects that serve clients of DDS and DMH who do not qualify for funding through the Community Based Housing or Facilities Consolidation Funds a priority for funding through the Housing Innovations Fund;
    • Clients of DDS and DMH are excluded from CBH;
    • FCF only applies to those coming out of institutions, who are already in community living, or who are “awaiting services” (meaningless, as there is technically no DDS waiting list);
    • Conversations with HIF indicate they won’t prioritize any project serving DDS or DMH clients, as they assume they are covered by FCF, unless they receive some external direction to do so.
  • Allow each bedroom to count as one unit of affordable housing in homes where services are funded through MassHealth or other agencies, as opposed to only those where services are funded through DDS or DMH;

    • This is automatic for DDS/DMH homes. For a home where services are funded through AFC or GAFC, it would need to be appealed through the Housing Appeals Board and there is no guarantee it would pass. Changing this would create an incentive for local affordable housing trusts to subsidize housing for individuals served through these programs.


Wonderfully articulate, Susan. I’m sure legislators learn more from hearing about lived experiences like yours than they do from the cold facts and numbers. Both are important, but your story (and others like it) make it hit home that the needs are real and personal, and the effects of inadequate services impact not just a single person, but a whole family and even ripple out into the community.

Thank your for your advocacy.

— added by Michael Forbes Wilcox on Wednesday, February 26, 2014 at 9:10 am

Wow, Susan nobody can put it as well as you can. This is why I bug you all the time to keep writing. You just told my story, also, except my son was 13 when we were faced with “going residential” and my son’s two sisters have had to heal from his violent behavior as well. The bluntness and directness with which you write is just wonderful. It!s a gift I wish I had.

— added by Sharon jones on Friday, February 28, 2014 at 12:13 am

Something needs to be done about housing. My son does not have autism, but has multiple physical disabilities. He does not quite qualify for DDS, but is way too disabled for Mass Rehab to find realistic employment possibilities. He can not live in any home without significant supports, but that will not be considered until we die. He will be coming home from a residential placement in less that a year and we are in a panic. We both work and his PCA hours are not sufficient. I have been researching housing and can not find an appropriate model that he qualifies for. I hope things change – fast.

— added by Cynthia Wisniewski on Sunday, March 2, 2014 at 1:08 pm

Hi Cynthia,
I know what you mean, I hear it all the time from parents whose kids are aging out of school. I truly believe, based on recent government legislation and funding history, that people must vote for legislators who believe in public programs like Medicaid and SSI and SSDI, and are willing to fund the programs. But it is also imperative that all resources — public and private — partner up to maximize resources. And they have to make known all that they can offer families and self-advocates. We don’t always know where to look!

— added by Susan Senator on Sunday, March 2, 2014 at 2:19 pm