Susan's Blog

Thursday, February 27, 2014

Important Massachusetts Legislation

Here it is. The legislation that will help you, family members and self advocates in Massachusetts who either have children with developmental disabilities or are developmentally disabled themselves, particularly those aging into adulthood. If you live in Massachusetts, you must cut and paste this letter into an email to your your legislators. This is how it is done. You cannot sit by and let others do it for you, or do nothing. You have to be an advocate, even if you don’t want to. And Gary Blumenthal of the ADDP has made it so easy in this draft:

Open Letter to Massachusetts House Members

Dear Representative,

People with disabilities have greatly benefited from the compassion, leadership, and vision of Massachusetts elected officials.  Through the darkest days of the Great Recession, members of the General Court protected services and supports for people with disabilities.  Please know we are grateful to you.

As you meet with Representative Brian Dempsey and the leadership of the House Ways and Means Committee we ask you to include the following issues on your List of Priorities:

1.  Please support full funding of the DDS Employment Blueprint Initiative (Line Item 5920-2025). ADDP & The Arc of Massachusetts request an additional $5.6 million over the Governor’s House Two Budget to enable people to move into Employment and Community Based Day Supports.  This request will be matched 50% by the federal government and is needed to implement the state’s Employment First Agenda and the Disability Employment Blueprint.
2. Please Support the Governor’s Budget with regard to Chapter 257 DDS Residential Services and DDS Family Support.
3. Please support increased funding for Autism (Line Item 5920-3010) and Turning 22 Services and Supports (Line Item 5920-5000.
4. Please support increased funding for Brain Injury Programs with an additional $2.8 million, Line 4120-6000 to begin implementing the Brain Injury Commission Report.

Your support for these items will help change the lives of thousands of Commonwealth citizens with disabilities for the better and help people live fulfilled lives in the community.

Thank you.


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.

Tuesday, February 18, 2014

Autism Mommy Swami: Planning Ahead for Housing

Dear Autism Mommy Swami:

How do you get started on finding a place for your adult child to live? How do you begin to feel comfortable that he will be treated well? Is this covered by Medicaid? My son is only 11 but I know we will have to be making these decision and am wondering how early we have to start looking.

Is your son still taking medication for anger issues?  Is this a life-long issue?

Thank you,

Thinking Ahead Mom

Dear Thinking Ahead Mom:

1) Regarding an adult child’s housing, your best bet is to apply to your Department of Developmental Services now and see if you can get him in the system for funding. This is usually called Waiver Funding. So if your child is eligible for DDS prior to 22, he stands a better chance of getting the funds for housing and staff post 22. Call the DDS about support services now, even though he’s still at home.
2) Start saving money, whatever you can put away, for some sort of housing for him, but do not put it in his name. Consult a Special Needs Attorney to find out the best, legal way to save for a special needs child.
3) Be sure he is on SSI the moment he turns 18. Qualifying for SSI at 18 I believe will then qualify him for Medicaid, which does have programs that support people like my son, but it is different in every state.  But the first step is go for SSI when he is 18.
4) As soon as he is 18, get him on the waiting list for Section 8 housing. You can apply for that in your town’s Housing Authority. There’s the national list and there are also local lists. Section 8 is a Federal program that offers vouchers for affordable housing (very very low income). It is a very long waiting list but he should be on it starting at 18.

As far as medication, Nat no longer has anger issues. We are bringing him down from Risperadone, weaning him from it. By age 18 he had learned how to express his frustrations, and he also understood more about the world. 11 was a tough age for Nat. Things got better once we had him start Special Olympics, though. It was a good way to socialize him.

I don’t think it is helpful for us to think anything will last forever in our guys! They grow and develop and learn. Stay optimistic!

Hope this helps!Love,


Sunday, February 16, 2014

I’d Like To Teach the World To Stim — in Perfect Harmony

The other day I had an email from an NYU sophomore asking if she could interview me for her Oral History class project. She wanted to know about mothering a child with autism. I told her that I’d love to, but that my son was now 24. She said that would be great anyway. She was down in New York, however, so we were not sure at that time how to proceed.

Then yesterday I was contacted by her project partner, Chris, who happened to be in Boston visiting a friend. Chris and I agreed to meet at my favorite coffee shop in town, Peet’s. Nat was home for the weekend, so I asked him to come with me; the interview was partly about him, so he should be there, too.

It was snowing really hard. I had to drop Nat off and then park, or he wouldn’t have been able to open the door against the hardened snow drift. We went into Peet’s together and found Chris, a smiling young man. Nat shook Chris’s hand. Then he went right to the glass case and started saying, “choc chih cookie,” before I had even gotten there. This was a happy development, however technically/socially incorrect it may have been, because Nat was so confident and was speaking up for himself without even being prompted! I did call him back to the end of the line, though. How can something be so right and so wrong at the same time, goes the love song, and it is also the song about Nat in the world.

Every time something like this get-together comes up now I realize either just in time or a little too late that Nat should be part of it. I can’t believe that I still have such a hard time thinking of him as a definite part of a get-together, rather than, well, luggage. That sounds horrible, right? But listen, to some degree, any time a parent has to bring a child along, it is a little like hefting more than you’d like. Until that child starts to grow up and become more visible, more there, he is more just cute baggage than anything else.

But Nat is not a child! Nat is 24. He is not luggage the way a toddler would be. He is 5’11” and very garrulous. No, he does not talk directly to the people we are with, but he is very much a part of the living, moving social noise of any gathering.

But: there was a time, and I still carry the trauma of that time, when Nat was highly unpredictable and scared me in public. It took years for me to get used to his being stared at, and also to realize that he was no longer going to try to hurt someone. He used to be so much less aware of what the outside world expected of him, and even if he did know, he did not know how to get the right behavior out of himself. He must have gone around with so much frustration I can only imagine it was the way third grade math was to me, but for Nat, it was every day of his life.

I need to remember that things have changed. I need to find a way to keep that fact with me, and bring Nat into every picture that is about him or that would interest him. He is a grown man and he seems so much more comfortable in the space around him. Certainly those around him get it better than they used to. They make room for his pointy widespread elbows, his faster pace, his sudden peals of laughter. He does not get stared at as much, or maybe I don’t notice it anymore. I’d like to think both are true, like maybe I now feel we are more deserving of respect, he and I, because of all we’ve been through together. Now he is a grown man, and a happy and confident one — albeit not speaking the language around him — and so people just see the man and they make room.

And indeed, we did find room at the long marble countertop against the cold wet window. I was in the middle while Chris asked me questions. Nat was on my left, scarfing his cookie and sipping cocoa with great animation. I think some of what Nat and I told Chris (in one mode or another) moved Chris to tears at times. Chris really got it. At the end of the interview I went to shake hands to say goodbye to him and he said, “Actually, I’m a hugger, so bring it in.” We hugged. Nat, however, is not as much of a hugger so in saying goodbye, he shook Chris’ hand, saying, “Hi Chris.”

As we walked back to the car, I tried to summarize the meeting because I was not sure if Nat knew why I had been talking so much about him to this stranger. I said, “People want to talk to me about you, Nat. A lot of people have little children with autism, like you. A lot of people want to know how to help their children be as great as you. You’re a really good person, Nat, and they want to know how to be a good person, like you.”

And we drove home through the heavy snow. Everything was just white and black, except the bright red lollipop stop light.

Tuesday, February 11, 2014

Them And “Her”

Probably one of the biggest joys I’ve found in being a mother is my children’s ability to surprise me. I experienced this while talking to my middle son Max the other day about the movie Her.  Max and I were dissecting the film, because he is a film major at NYU’s Tisch School, and I always want to hear his take on the director and cinematographer.  At one point in the conversation I told Max that his brother Ben, who is 15, had come along and had a real appreciation for the technology depicted in the film.

Max was not at all surprised by how Ben liked Her. He and Ben are four years apart but they have always shared a love for video games, animation, and graphic design. I have always felt so proud of  their relationship, the way Ben looks up to Max, and the way Max, savvy ultra cool older brother that he is, still rarely looks down on Ben. Maybe all parents are tickled by seeing their babies taking shape as real people and finding they like each other for who they are — and not just as a sibling who shares your family space.

Which is why it often pains me to witness Max and Ben’s relationship with their older brother Nat. Nat has fairly severe autism and Max and Ben do not, so communication has been a struggle. Nat can talk, but his processing is so slow and convoluted that it is extremely difficult for him to focus and then get any words out. Even though many of us who know Nat feel that he understands far more than he appears to, it is hard to keep that in mind at all times. And when you are a younger brother living a very fast-paced, high tech life, it is beyond difficult to stop everything and wait and rephrase and wait for a brother to answer. And when he does answer, his language sounds much younger, childlike; it is unfortunately easy for people to underestimate Nat and dismiss him. Even though Nat’s brothers do love him in their own unexpressed way, their relationship with him is somewhat of a leap of faith. Their whisper-thin bond with Nat is something I have to listen carefully for, and strain to see. It is there, but it is so often intangible, and I am so very hungry for more.

So when I told Max in an Instant Messaging conversation that we had also taken Nat to see Her, I was surprised by his reaction. He wanted to know what Nat thought of the movie. I was ashamed to admit that I had not even asked him. We are all creatures of habit, and I am no exception. Sometimes I forget that Nat is experiencing life in as deeply and layered a way that I am; I just don’t know what that looks like and he does not offer to tell me.  In asking me what Nat thought of the movie, Max reminded me that Nat has a full psyche and that Nat is a part of Max’s:

Me: I don’t know what Nat thought, but I know he must have loved the orange! [Her has a lot of the color orange in it, something Max and I both loved about the film.]
Max: you brought Nat? interesting. did you ask him what happened?
Me: the four of us went. Nat paid attention the entire time, never looked around.
No I did not…
Max: that would be an interesting perspective
Me:  yes, good point.
Max: it could make an interesting blog, actually
Me: for you or for me?
Max: whoever
Me: what’s the angle?
Max: watch movies with nat, and then ask him what happened in it and record his responses
some guy runs a blog where he asks his Italian father, who doesn’t speak much english, to review movies
and those are always funny, which these might not necessarily be but it could still be interesting
Susan Senator: sure. but if you were to write a particular post about it, do you have a theme, an angle?
Max: oh, no. it would be a blog, not a post. just the title of the movie and his response or the dialogue, if there’s a conversation around it. could probably even work as a twitter account, he’s pretty succinct
Me: Well, I enjoyed taking him because he was so into it, and he’s a good person to eat candy and popcorn with.
He is indeed
Max: doesn’t waste words
Me: He boils it all down

[At this point I think we were both remembering how Nat often answers, “You fall down,” when asked what a movie was about. This goes way back, to when Nat watched his first live-action movie, The Matrix, and was very impressed with how Neo falls off skyscrapers and survives each time. “You fall down” has become a family meme.]
Max: the majority of hollywood films, billions of dollars annually, cut down to “you fall down”
Me: LOL. actualy, Joaquin Phoenix did fall down. in the subway or was it on the street. You can get Nat past that if you ask again, slowly and seriously. like when he said, “Tiger,” about Life of Pi.
Max: hahaha. well, that kind of does sum it up
Me: yes
Max: it’s like the most minimalist movie review possible.

Just bare bones AOL Instant Messaging, terse typed dialog, smileys and LOLs, but the whole time we were talking/messaging, I had tears in my eyes.  Those boys — both of them — say so little, and yet, so much.

Tuesday, February 4, 2014

What I Would/Should Ask Nat

I often feel troubled by not understanding Nat and his state of mind.  I do not believe in my heart that what you see is always what you get. I wish I could. People say, “If he doesn’t seem unhappy, he’s not.” Yes, but no. Sometimes I am not satisfied with that. So here is what I want to ask him:

1) Do you understand what I say when I speak normally, that is, quickly, using metaphor?

2) If so, do you feel bad when I adapt what I’m saying to a simpler language?

3) Do you know that I respect you, no matter how I talk to you?

4) Are you lonely?

5) Do you feel left out when everyone around you is talking? Or maybe you’re used to it by now?

6) Do you understand why we are planning your life without really knowing you how you feel about it?

7) Do you wish that you and Ben were close?

8) Do you feel Max reaching out in his quiet wispy way?

9) What do you want for your birthday?

10) Have you ever been abused?

Saturday, February 1, 2014

Welcome to the Autistic Community

The Arc of the US’s Autism Now Center has partnered with the Autism Self-Advocacy Network (ASAN) and has written an excellent booklet, “Welcome to the Autistic Community!” This is a positive-language, informative, accessible document with clear illustrations, that gives a newly-diagnosed autistic person a handle on what autism might mean for him/her. There are chapters like “Am I Okay?” and “Where are the other people like me?” and “What are my rights?” The booklet also covers the topic of differently-developing brains, sensory overload, and self-esteem.

My one piece of advice: I want them to put out a first-grade reading level version, so that someone like Nat can read it to himself or have it read to him and really be able to parse what it means to be an autistic adult. I don’t want anyone to forget that some autistics have intellectual disabilities. I want to be sure that all of these efforts at inclusion, acceptance, and accessibility do not pass over someone like Nat.

But for now, I can read it to him.

The takeaway here is: download it. Read it. Tell others.  This booklet needs to be spread everywhere, like appleseeds, and take root all over the earth. Doctors’ offices, schools, places of business, libraries, hospitals, supermarkets. Write it on the doorposts of thine house and upon thy gates. We are here we are here we are here.

And as Nat would say, “It’s a-different, that’s okay.”