Susan Senator

My uncle just died. My parents were up here because it was clear that his death was imminent. Their visit also coincided with my very first public bellydance performance. They went right from his deathbed to Cambridge, where the performance was being held. My mom wanted to see me dance, and had planned a while ago to be here for it, but now she felt terribly guilty to be going to this colorful, joyful event, to feel happiness and pride, in juxtaposition to what was going on with her family, at the hospice.

But my sister said, “Don’t put off a mitzvah for anything.” She was referring to a practice in Judaism, where even in the face of death you are supposed to take part in joy. For my family, this admonition always brings to mind my wedding, which took place two days after my grandfather died. I remember that time, when the whole family was coming in for the wedding, including Grandpa — my father’s father. Grandpa had been suffering from depression for some time, but seemed to have rallied for the trip. I stopped off at my aunt’s house, where he was staying, and I told him, “We can dance at my wedding!” And he said, “I won’t be dancing at the wedding.” I took this to mean he was still feeling depressed, and I let it be.

But no, Grandpa had probably known that his end was near. I was shocked by the news, and I figured, “Oh well, I guess we won’t be getting married, then.” But my parents said, “Oh, no. You should never postpone happiness.” Their gravity and certainty blew away any reservations I’d been having, and so we went forward. And so the day after my wedding I went to Grandpa’s funeral and then was whisked away to my honeymoon in Italy. Never an anniversary goes by when I don’t remember the Other event side by side with my own. All of my wedding pictures, Dad has a forked vein in his forehead even with the smile in his eyes.

Yet I do not regret what we did. I’ve come to see that this is exactly the flavor of life: sweet and salty together. The happy and sad. They complement each other. We feel happiness more when we have it to compare to pain. The sharp knife, the soft skin. The ripping childbirth, the aching joy of the baby, the full heart, the deep new fear.  We never have a moment where we are just basking, suspended in joy. For if we are aware of it, it is changed immediately by the recognition that it is finite. My children advance into the world, and we say with brightest yellow pride, “Wow, look at him go!” and then followed by the fuzzy shadow of, “I hope nothing bad happens to him.” And that brings to the ready the roaring Mother’s cry, the bellow of the jungle, the Lion ready with bloody teeth. We are all from nature, and it certainly is “red in tooth and claw.”

So I danced, in bright red, dark purple veil flying. My parents and my husband and many friends came to see me, a 52-year-old bellydancer. I discovered my bliss perhaps a little later than most bellydancers, but it wasn’t too late. While we’re living, it never is.

My latest column for WBUR/NPR’s “Cognoscenti” segment is out today. This piece was inspired a few weekends ago when Ned and I observed Nat as he sat quietly on the T next to a young woman his age.

In February of 2015 a friend called and asked me if I had any suggestions for speakers on Autism Awareness and Acceptance Day at the State House.

I had been a speaker on Autism Awareness Day back in 2006, which had been a great experience. But the most exciting Autism Awareness Day I’d ever attended by far had been the very first, when the guest speakers were a young man and his mom. This young man had a developmental disability, perhaps autism, and he had stood up at the podium with his mom, a longtime activist. He was in his early twenties. I don’t remember if he actually spoke but I do remember his stage presence, his proud posture, his adult demeanor, and I remember thinking, “Wow. How does that even happen?” I was, of course, wondering what Nat would be like when he was that age. There was a small smoldering sadness kind of behind my eyes, which back then was so familiar. In those days I was always looking at Nat with so much worry about who he would become. He was a young teen then, and had accomplished so much with his life – team sports, bar mitzvah, comfortable traveler, excellent student. But I was focused on grown-up Nat, unknown Nat. Out-in-the-world Nat. And most of the time when I thought of him it was with the sweeping protective despairing love of Mrs. Jumbo, the so-called “Mad Elephant” who was Dumbo’s mom.

But I put that pain aside and went back into my life at the time, raising my boys, writing books, and attending and speaking at events like this one. When I got the call from one of the organizers that winter day, I thought about one young man I knew — Scott Lentine, a poet, legal assistant, and self-advocate. who could speak about his life for Autism Awareness Day 2015.

As we were talking, though, the organizer made it clear that they were also looking for a speaker who had fairly severe autism – someone who represented the end of the spectrum that is rarely written about or talked about. I thought of Nat right away, and volunteered him as a speaker, with his caregiver — John — to round it out. Why couldn’t Nat do it, after all? He could answer questions as long as they were shaped around specific information. And he could type his answers. He could construct a speech about Shared Living, which was one of the topics scheduled that day.

My husband Ned, of course, was a little skeptical when I told him. This was our old familiar pattern of my big floaty dreams being met with Ned’s rock solid sense of reality. “It might be too much for him,” Ned said. “I don’t know if he’ll be able to focus.”

I would not hear this. “He’ll love it. He’s great with crowds. He’ll practice the speech. It will be just like his bar mitzvah.”

Ned would not give me the satisfaction of agreeing and getting excited about it with me. But that was allright. It was going to happen. And I knew that whatever “it” turned out to be would be okay. That Great Hall at the State House was going to be filled with friends, autism families, advocates, and legislators who knew about Nat or if not, would just love him when they saw him.

I’d come a long way since those days when he was 15. More importantly, so had Nat. The process of helping him write the speech went just the way I thought it would—a satisfying confirmation of my deep familiarity with Nat’s abilities and his favorite pastimes. Typing answers to questions was something he felt strong about, after all. I told him: “Some friends have asked if you want to talk about your life with John, for a special day in the spring, in April.”

He said, “Yes,” right away. So I told him about how he would create a speech and that by reading it to the crowd he would be helping others understand how to live in an apartment and have a job, like he did.

He eagerly sat with me, laptop open, eyes strained as if to catch the words I spoke. I asked him questions like, “Nat, where do you live?” And he would answer.

“Okay, type that,” I’d say. If he got lost I would repeat his own words, and restart him. After about a half hour we had 73 words about Nat’s experiences with Shared Living. Here is the speech:

Thank You

Living at Kelton Street. by Nat Batchelder

Brought Bag up stars to apartment at kelton street

At Kelton Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to Kelton Street. movies with jon. Put plates in dishwasher. set table. put   datergent Lindre in drire

Feel happy

love nat

Better than most speeches one hears at the State House, don’t you think?

The night before Nat’s speech I didn’t sleep very well. I knew I didn’t have any reason to be nervous, exactly. I guess it was just that I didn’t want Nat to feel uncomfortable once he got up there and actually faced all those people. I kept trying to tell myself he would be fine, he doesn’t get worked up when he’s scared or when places are noisy and crowded. The episodes he has had with acting out are always about a sudden change in routine combined with his confusion and inability to formulate questions. And without being able to question us, he becomes choked with frustration.

I rushed through getting dressed, changed my outfit many times, although I don’t know why – this was not my show, after all. But old egos die hard. I found Ned there and I found my old buddy Jeff, too, who had come there for Nat. A steady stream of fellow autism parents and professionals from over the years came up to me and wished me luck. Some had brought their children – budding self-advocates. Some were giving their own speeches. It was a warm sea of friends, buoying each other up, as we always did.

Nat was not there, but of course I kept scanning for him. I looked at my phone and there was a text from John: “It’s on Beacon Street, right?”

Ahhh! John! That same old laid back, huge self-confidence. Was he seriously not even inside the State House yet? I was back to my bouncy nervous state.

Five minutes later Nat strides in, glowing in his dove gray suit and silver striped tie. I gave him a kiss and gave John a hug. Nat was wired, but in a good way. I dug a pile of papers out of my bag: I had copied Nat’s speech to hand out to everyone so they could follow along. I guess I was obsessing about people not being able to hear him or understand his quick way of reading. My hands were shaking and I suddenly felt shy going up to people with my son’s speech. So a friend came to my rescue and had her sons take over distributing them for me. I found Nat a seat in the front row and we all settled in.

The Governor was ahead of Nat in the order of the program, and he gave a warm, sometimes funny speech, more like telling us stories about his experiences with autism families.

Then it was Nat’s turn. He seized hold of the podium and began almost immediately.

You could not hear a thing, though his lips were moving correctly over his written page. One of the speakers – an autism mom who had created her own day program and residence – got up to push the mic closer to Nat. I still could not hear him. Dammit, I thought. Here I go. “Louder!” I shouted.

Nat shouted into the mic for one phrase, then went right back to his whisper. And I sat there feeling like an idiot because I had stepped in like a pushy stage mom and interfered with this young man’s speech.

But really, what would anyone expect from me? That’s the kind of mother I am, and I am the kind of mother Nat needs.

In the end, I don’t believe Nat cared. He finished his speech, in his softest, quiet voice. But it was the voice of one of our guys, and it so roared like thunder within those marble halls.

Today, World Autism Acceptance Day 2015, my 25 year old son Nat who has fairly severe autism spoke at the Massachusetts State House. Right after Governor Baker (scroll down for link to pic of the Gov applauding Nat!)  Here is the text of Nat’s speech, completely his own words, that he typed, and read today.

Thank You

Living at _____ Street. by Nat Batchelder

Brought Bag up stars to apartment at k street

At _____ Street I eat Lunch go to bed sope and shawor, get ready pajamas go to bed

Jon coms, says get up

Brush teeth

Go to ASA Do meals on wheels

Back to ______ Street. movies with jon. Put plates in dishwasher. set table. put datergent Lindre in drire

Feel happy

love nat

(Nat and Proud Mama)

The Governor of Massachusetts, applauding Nat at Autism Day 2015 at the State House

Some of you readers haven’t seen these faces in a long, long time. It’s almost Max’s birthday so he’s home!

Autism Housing Pathways (AHP) will present a full day workshop on housing on Saturday, March 28th, at Advocates, 1881 Worcester Road, Framingham.

Come prepared to roll up your sleeves and work! The goal is to end the day with an idea of what benefits your family member may be eligible for, what you can afford, and what models might be applicable to your situation. We will be completing questionnaires and worksheets, as well as Section 8 applications. You will not need to share this information with anyone; it is for your own personal use.

Attendance will be capped at 15 participants. While prior attendance at one of AHP’s presentations on housing is helpful, it is not necessary.
Please RSVP to Cathy Boyle at ccampboyle@comcast.net.

The day will run from 8:30-5:15. A light breakfast and lunch will be provided.

The first three families to sign up that meet the criterion of a grant Autism Housing Pathways has received from the Mass. Developmental Disabilities Council that are not already participating in the grant, may, if they choose, be placed on the waiting list for the grant. The grant criterion is that the individual with a developmental disability be unlikely to be Priority 1 for residential services through DDS at age 22. Participants in the grant will:

Receive a workbook to be completed by the individual with a disability (either independently or with assistance from a trusted individual) touching on preferred activities, lifestyle and location, and being a good neighbor. The workbook will be available in three formats: one written at an 8th grade reading level; one written at an early elementary reading level; and one comprised of picture-based social stories and sticker activities.
Upon completion of the workshop and workbook, individuals and their families will engage in a person-centered planning process, using the PATH tool. While the primary focus will be to develop a housing vision, it will be necessary to include other parts of the personal vision to assure compatibility between housing goals and other personal goals. Each plan will include a pre-meeting with the individual and/or his/her family, as appropriate, to determine whom the individual would like present when the plan is created, and to help the individual begin to reflect on his or her vision; the main meeting, where the individual and those he or she has invited create the plan; and a follow-up meeting a few months later to check in on how things are going in implementing the plan. Person-centered planning meetings will be scheduled at the convenience of the individual and his/her family, but must take place before June 20, 2015.
6 months after completion of the day-long workshop, a questionnaire will be sent to individuals and/or families to determine if a Sec. 8 voucher application has been completed, what benefits have been applied for, whether an asset development strategy has been adopted, and whether their living situation has changed.

…was on Facebook with his Aunt Laura. Here is the transcript, I copied it from his Facebook Messenger page:

(Laura): Hi Nat, I’m at work. What are you doing today?

(Nat): basket ball

(Laura): have fun!  Are you going to jplicks?
(Nat): ice cream hare

(Laura): Oh great!
(Nat): good

(Laura): what are you doing tomorrow?
(Nat): dad jplcks
drive jpliks

(Laura): I knew you would go there!  Why can’t you walk?
(Nat): snow

(Laura): Oh of course.  What’s your favorite ice cream flavor?
(Nat): chlket

(Laura): How is John?
(Nat): good

(Laura): Do you still like the apartment?
(Nat): like apartment

(Laura): Has it been hard to work shopping carts with the snow and cold?
(Nat): yes

(Laura): Do you ever work other jobs at Shaws in the bad weather?
(Nat): baskt

(Laura): what job is that?
(Nat:) clakt basket

(Laura): Oh I see.  Which job do you like better?
(Nat): basket

(Laura): Why do you like it better?
(Nat): ok hard
[nat left]

(Laura): Shopping carts are harder?
ok bye?!

[nat comes back]: good bye

Number One: People grow and develop. Education works. Sticking by someone and believing in him works.

Number Two: Disabled does not mean “can’t.” It means “I possibly can, with the right supports. Give me a chance.”

I have a lot to be grateful for. 1) Nat’s tremendous growth and ability to learn; 2) Nat’s wonderful independent living skills education at the May Institute; 3) Nat’s amazing loving caregiver who lives with him in their small apartment in Boston nearby; 4) Nat’s tremendous growth and ability to learn. Lather, rinse, repeat.

Especially given the concern and worry I devoted towards Nat’s self care skills. I despaired that he’d ever learn how to even make his own breakfast, as you can read here in this 2004 New York Times article I wrote for their Education Life section.

Read the piece, and then play this video, taken this morning by his caregiver John. John merely said to Nat, “What do you want for breakfast?” while sitting on the couch, not even in the kitchen. And then Nat went ahead, as you can see. NO PROMPTS.

And now say to yourself, “With autism, never say ‘never.’ With any human being, never say ‘never.'” If any professional every tells you “He will never be able to …” you might consider walking right out of that office, and directing them to this blog post and the video below:

NAT making breakfast with NO prompts, 1/28/15

This morning while driving I realized I was behind a van, one of those tall white ones, that transport either school kids with disabilities, or adults in day programs. The rearmost seat showed a hatted head, with gray hair sticking out underneath so I knew it was an adult van. Then I thought of Nat, of course. I remembered immediately that he would be at work this morning, in the supermarket parking lot gathering shopping carts. Small stab of pain in my chest, just the tiniest drop of sadness gathering there. Not because he is a person who has that kind of allegedly menial job. But because I wondered if he was cold. And that I had forgotten about him for the morning, until this moment.

The two thoughts merged while I waited for the left turn signal. The van in front of me became a blur as I remembered the actions I’d taken the other day, to protect Nat from being cold. I had heard from the day program that he was coming in without hat and gloves, and was wearing low socks. Right away I had talked to his caregiver John, whom I love, and who loves Nat dearly, and we’d figured out together what to do. John had then spoken to the day program, agreed about the socks, and then the day program director — also a good guy — pointed out in turn that he’d discovered Nat’s missing hat and gloves in someone else’s locker there. Problem solved.

It’s not often that easy. I often have trouble figuring out what Nat’s doing when during his week and it is no one’s fault. It’s just that he is involved with many people during his days. There are many parts to the Nat machine and keeping them all well-oiled and operative is still my job — even though I am no mechanic. I’m much better at the softer skills, the things I can see and touch, particularly when he is home with us on the weekends. I can look around the kitchen and see he has not yet eaten. Then the problem is to get him to initiate wanting to eat. That is a piece that flies away from me whenever I come near it, like a startled bird. You can never really catch those birds. I don’t know if I will ever get Nat to consistently ask for what he needs, let alone just take it. I am the proponent of “With autism, never say never.” And I’m not saying “never,” but I am seeing initiation for Nat with a big sigh blocking it. And I’m just as much an obstacle, because I love mothering in certain ways, and jumping to make a fun meal for him is one of my favorites. So the Goals and I seem to be at cross purposes.

Sometimes I feel that Nat and his adulthood, and I are at cross purposes, actually. I’m supposed to let him go, and be in the world independently, with the help of others and only sometimes me. But how in the world does one pace this type of thing? And yet it is happening, because I had indeed forgotten about him until I saw the van.

All these thoughts were tumbling through as my vision blurred and the van was a shadow. I thought, I am at such a loss about this letting go thing, because I am torn between wanting him to be a successful adult and with wanting him to feel like he still has the love and protection of his mother. Many of you are shaking your heads, smiling wryly about how I hover, or how Nat is so grown up and I just can’t see it. But do you realize that it hurts — hurts — to think that he might indeed want me more in his life and then finds that I’m not!

So there was that little pinch in my heart, that’s what it was. And then it kind of popped, like a blister, and became something else. For right there, next to those fast moving scurrying ant thoughts along came another memory, creamy and slow, like lotion in a bottle, almost run out: I realized I was at the very corner I’d been 24 years ago, where I was supposed to meet Ned and Nat (after my appointment nearby). And sure enough, Nat had materialized there, swaying atop Ned’s shoulders. Wobbily joyous. Then his face had lit up even more because he’d recognized me. There was that wide goofy baby smile. He was so glad to see me — but he had been happy without me, too.

This information below comes directly from the Arc of the United States. The new Congress is now stealthily pushing to reduce Social Security Disability Insurance benefits by potentially 20%!!! Taking aim at the most vulnerable, most under employed sector of the US population. Is that fair? Here is the information from the Arc:

The Arc Action Alert: SSDI Under Attack Today: Tell Your Member of Congress to Vote No on House Rules

On the first day of the new Congress, proponents of cutting Social Security have hidden major disability program changes in an unrelated, routine package that sets the rules for the U.S. House of Representatives.  These changes to the Social Security disability program have not been considered in hearings or open to input from constituents.

As Members of Congress are organizing for the new session, the rules governing debate and procedure in the House must be approved.  Tucked in this package is a provision that takes off the table a routine shift in Social Security revenues needed to prevent a 20% cut in Social Security Disability Insurance (SSDI) benefits in 2016.

This vote is happening this evening – call your Member of Congress now to support SSDI.

In 2016 Social Security’s disability fund will face a long-expected shortfall due to demographic trends such as the nation’s aging population.  Since Social Security was enacted, Congress has “reallocated” payroll tax revenues between the retirement and disability trust funds – about equally in both directions – some 11 times, on a bipartisan basis, to account for such demographic shifts.

The House rules package would hold SSDI hostage by putting up roadblocks to another routine, common-sense shift in Social Security revenues.  Unless Congress acts to temporarily increase dollars going into the disability fund, in 2016 SSDI beneficiaries will face a 20% benefit cut.

Instead of having a meaningful debate about the future of Social Security and SSDI, House leadership is seeking to make major policy changes that will affect millions of people without hearings or input from their constituents, essentially in the dead of the night.

Call your Member of the House of Representatives today and ask him/her to protect SSDI and vote NO on the House rules.

The House rules package contains a harmful provision that could force cuts to Social Security, including Social Security Disability Insurance.
People with disabilities rely on this program for basic needs – any cuts will have a devastating effect on our/their lives.
This major policy is being done without hearings or input from your constituents, essentially in the dead of the night.
Vote NO on the House rules package when it comes up for a vote today.

Nat’s going home now. It’s always a blue-tinged moment for me when he leaves. I never fail to wonder if he is doing what he really wants in life. Is Self-Determination an attainable goal for someone like him? When Autistic Self-Advocacy Network (ASAN) says something like, “Nothing About Us Without Us!” can that include Nat? What if I am the person who speaks up for him the most? Am I then to be included in that “us?” I hope so.

I know I can speak for caregivers  — the ones who really, truly care for and about their autistic loved ones, not the ones who phone it in or worse — when I say that we deserve a welcome at that table. And I do feel welcomed by the autistic self-advocates, and I think that’s how it should be.  I wish their language could be amended to reflect the fact that people who have the challenges Nat faces really depend on others to speak for them. Some things about him have to happen without him. I wish it were not so, because I want him to be the author of his life. But he always has a ghostwriter, mostly me.

I don’t know how Nat feels about this reality. Is he used to not doing a lot of things for himself, by himself? Does this bother him? Or is he accepting of it? Maybe both. I guess everyone’s different in how much they accept of their inabilities. Anyway, I try so hard to talk to him, to include him in our conversations, but he still is talked about, talked over. Others are far worse than me in this regard. I’ve seen so many well-intentioned people ask me what he’d like to drink. To them, I am that intertwined with Nat’s presence. They think I know. This Christmas it was very natural for me to answer, “I don’t know, you’d have to ask him,” completely without anger. It came out naturally; I knew Nat would answer. How does he feel about these kinds of situations? I hope he’s proud that I just steer people to him, more than pissed off that I have to do that.

I notice how the norm for most people in our family is to ignore Nat. His brothers do not even think to include him in the simplest of activities, like looking at stuff on their laptops together. I wish it were different and yet this is how it has to be. Their lives, their decisions have to be their own. I know that if I were to ask them to include Nat they would, but would that be good for them? As it is they have had their lives changed greatly by having Nat with them — in good and bad ways. I cannot decide things for them without them.  It feels like it is crossing a line to do that. Don Meyer, Sibling Expert, told me in an interview that you have to let the siblings have their own existences, let them do what they need, their lives are hard enough. That there are so many questions in their minds, fears for the future both named and unnamed, that they wrestle with in regard to Nat, that for me to then step into their consciousness and give them tasks, basically give them the message that the thing they are doing is not nice — would be an invasion of an important boundary.  It’s not that they’re being mean. It’s that they are being themselves. I never let them be mean. But this is a gray area that now that they are 22 and 16 they must navigate themselves. They have to come to it themselves and the more they are allowed to be who they are, the more likely they are to come to Nat in the future and open their arms to him.

I try hard to let the three of them determine for themselves who they are and what they want to do with their lives. But they do need my guidance. They cannot be allowed to be mean. Is not including Nat mean, or is it merely what they do right now?

As for Nat, not being able to speak for himself much is one of Nat’s greatest challenges. He is frequently passive or unable to determine what he wants, and so it is a complete conundrum to help him in this regard. Helping him not be passive — the only way to do that is to sabotage things, make him so frustrated that he has to ask for them. It feels cruel and in the end, it doesn’t really help. It’s an ABA-ish solution, one where you may end up helping but the means of doing so are questionable.

You can’t force someone to move past their disability. You have to accept their limitations as much as they need to. You have to give help, and they have to accept it, but you also have to not help sometimes. Sometimes you also have to step back and let things go on in an unsatisfying, imperfect way. I don’t like that. And so, letting him go home Sunday evenings in this murky set of circumstances feels bad to me, like it does when people basically ignore Nat. In the end I have to hope that what we are doing or not doing for Nat is what he would want. Or at least what is okay with him.

Here is a piece I wrote about an event I attended on December 9 at the John F Kennedy Library in Boston, for Tim Shriver to talk about his new book, Fully Alive: Discovering What Matters Most. Enjoy!

Warm sunny Sunday

Come sit, my darling

You are yellow and blue but not afraid, not sad

Together we dent the couch, sinking in

You’re so close, I breathe you. My heart’s a balloon, filling, stretching.

Pick who you want to talk to

I ask you to give us some words, if you can. Are they light inside you today, effervescing at the top of your throat?

“Yes,” soft and fragile, floats like a bubble.

Finger crooked over the letters, darting: where are they? Don’t lose the word, quick. I’m breathless waiting for the connection.

Fingertip to key,

Words to me.

“We should all have equal rights. We need a place to live, too. Not just typical people…any number of people that you wish.” A developmentally disabled client of Jewish Family and Children’s Services, November 6, 2014.

“I love my house. Don’t shut it down.” Another young man with a developmental disability, I did not hear where he was from.

Integration, and Community First Vs. Self-Determination is the issue at hand. Does one-size ever fit all?

CMS, Centers for Medicare and Medicaid Services, has come out with new rules related to home and community- based settings: “Full access to community living, integrated settings.”  Department of Developmental Services in Massachusetts is proposing to go further, beyond the new CMS rules and restrictions on community residences and DayHab. They are having two hearings, one was tonight, November 6, the other is November 12. (Send your email testimonies to HCBSWaivers@state.ma.us for comments by November 15)
Tonight there was a gathering of perhaps 150 people at Mass Bay Community College in Wellesley, Massachusetts for the HCBS Medicaid/DDS public hearing. Many of these giving testimony were family members, residential home staff, and self-advocates. Many great points were raised, for example (please forgive my paraphrasing, I tried my best to follow their exact words). I am not doing justice to the passion and eloquence and variety of great points raised, I’ll just do my best to pull out points that jumped out at me:

First there was Steven, from Stoughton, stepfather to M, 44, developmentally delayed, lived at New England Village since 1993. There are over 150 ppl there. Full time nursing staff. Life skills, pool, wellness center, arts&crafts, helps other residents, takes cooking lessons. Friendships develop betw residents at diff houses and outside of NE Village. “Working is what she does best.” His wife is always in the loop with regard to every aspect of Michele’s care. Michele has learned about the cycles of life, even death. (sat with resident who had Altzheimer’s in his last hours).

John of Berkshire Hills Music Academy said, “A shame to judge a community by just one standard.” “Community should never be defined as a fixed location.” “Don’t assume that just because it is a community setting doesn’t mean it is unsafe.” Used example of those many in Assisted Living. “What if we take that choice from them?”

Paul, brother of M, who is as he put it, “severely retarded… Couldn’t take a bus anyplace. We had an objective: to find a happy healthy place for her to grow.” Has been in New England Village for 42 years. She has grown: library card, white water rafting, kayaking, shopping with others…It is a village, not a home, not an institution. You must look at each person individually, you come out and look at these establishments, see how the people react.

Barry: Chair of Board, NE Village. Created as an answer to the de-institutionalization. “Speak to understand what the person wants and help them achieve their goals.”

Kathleen, A’s sister, also NE Village. A is very involved…picked out her own room colors, goes to the animal shelter.” Later, A spoke, too.

Another, a mom of a 22 year old at an Amigo group home. “He receives prompts and reinforcers to help him through his day which could be defined as coercion inadvertently.” “Taking away the ability to use restraints judiciously could result in dire consequences,” And “What will be the fallout in terms of disability sensitivity  when videos from community are released into the media?” Also, “Forcing Timmy into the community for 30 hours would cause him serious distress.”

M — a client who spoke for herself. She lives in “The Yellow House” since 2010 w 6 roommates. “See how awesome our home is,” she said proudly.

A sister, guardian of a 63 yo. Lives in home run by Charles River Arc, one of three houses on a cul-de-sace. Less than 2 miles from Needham Center. No evidence that these three homes are contrary to the goals of HCBS. “There is no way that my sister would choose to relocate.”

Stephanie B asked: “Are we responding to the integration mandate or the person centered choices first?” Person-centered Planning will lead to integration!!”

J, who lives in The Yellow House: “I want to continue living with my six friends. Thank you.”

Another, M, lives with eight housemates. “That is a better number to live with than just being with five…We plan meals together, we enjoy talking to each other. To me living in a Shared Living apartment helps me to grow up and live away from my parents.”

Irene, I’s mom. Isaac is autistic, 26, served by Amigo. About DayHab: in school, they trained Isaac in voc tasks. He needed a one-to-one. He never got any training doing these things in the community. The school deemed him not ready. At 22, no money for a one-to-one job coach for him. Too difficult to fade out the job coach. So, what good is it to have a person do a job when you need another person right next to that person to make sure the job gets done? So Isaac is in DayHab, scheduled day. He has more opportunity than when he was in a program that exercised voc skills !

One woman with a disability spoke of the need to push for integration, to give people chances to grow. “Community First,” was what she said — so she is of a different mind from the others who spoke before.

Gary Blumenthal, ADDP, told DDS, “We’re all here because you all have done such a good job!” We ask that the Dept of MassHealth not Pre-judge CMS. CMS will hold you to your word. We ask that you work with the providers that will be part of the Joint Committee of DDS and ADDP to determine in a manner that is outcomes-based that looks at the total experience of the individual with the disability and not just on their location. We ask that we have a chance to see what amendments you take before it goes to CMS.

Jude, an autism mom, and J, her son: “J is not an adult but he will be soon.” Crying, she thanked a lot of Jack’s friends for coming. “Important that our loved ones with autism be seen and heard.” Jude mentioned that she also works for Autism Speaks when CMS looked at these rules, Autism Speaks “expressed concerns about rules that restrict where people live.”

A, who is from Sage Crossing. Her son told her he always wanted to live on a farm. He wants to work the land. Under the proposed options, he won’t have that possibility.

Another couple: “What is the number five? …Why should the folks that live in the over-five-people homes, their family be limited to just three or four others?”

Cheryl C, an autism mom: “The broader community is not inviting my son to come to their house. No one has the right to decide that people with disabilities aren’t capable of being friends and supportive of each other. And that they must be in a public place to be fulfilled. I’m sorry, but that’s crap.”

Cathy B, an autism mom: “Overwhelming sensory issues limit the time some individuals with autism can spend in the community.”

My feeling while listening was: Forget the fact that there are so many family members and staff testifying about the need for self-determination, not tenant number-based or location-based restrictions for happy, healthy residences for the developmentally disabled. BUT the fact that all of these self-advocates —  intellectually disabled people could come here and testify themselves — doesn’t that say anything about how things have changed since the closing of the institutions?  There is so much more independence, people working, living worthwhile lives. Why is the DDS messing with success?

If you live in Massachusetts near Wellesley, or Westfield, PLEASE consider attending this hearing! Maybe work it out so that your autistic adult family member/loved one attends with you. DDS et al. need to have AUTISM IN THEIR FACE. This may help them get it. Wear RED!!!

If you have considered creating or settling your autistic loved one on a farm, for example, you can forget about that if these rules go through.

BULLETIN From Cathy Boyle, of Autism Housing Pathways:
This Thursday 11/5/14, at 6 p.m. there will be a public hearing at MassBay Community College, 50 Oakland Street, Wellesley, Massachusetts.

Westfield State University campus, 577 Western Avenue, Westfield, on November 12, 2014 at 10:30 a.m.

MassHealth will be hearing public comment on its draft transition plan on Medicaid’s new rule on home and community based settings. While this sounds complex and technical, the bottom line is that the final plan will determine where you can use Medicaid funds to pay for your adult family member’s services. Even if your child is not yet an adult, these changes are likely to be in effect for a generation. As of right now the draft plan means people with DDS funding will NOT be able to be used in:

SELF-CONTAINED, QUIET SETTINGS REMOVED FROM THE COMMUNITY (* Settings that have limited, if any, interaction with the broader community);
* Settings that use or authorize restrictions that are used in institutional settings;
* FARMSTEADS or disability-specific farm community;
* GATED or SECURED communities for people with disabilities;
* Settings that are part of or ADJACENT TO A RESIDENTIAL SCHOOL;
* Multiple settings co-located and operationally-related that congregate a large number of people with disabilities for significant shared programming and staff;
* Multiple settings on a single site or in close proximity (see directly above)

“DDS may license or fund new homes in the community that are duplexes, “triple-deckers”, or free standing homes that are either side by side or adjacent or on bordering lots only upon the review and approval of the regional director, the assistant commissioner for field operations and the assistant commissioner for quality management. The capacity in these settings may not exceed four (4) individuals on each side of a duplex, in each unit of a triple decker or in each free standing home located on adjacent lots.”

The new Medicaid rule also applies to day services, and may result in severely restricting the use of center-based day programming. Individuals who cannot participate in the community 30 hours a week, either in competitive employment or recreational activities, may find themselves at home much of the day. While the current draft transition plan refers only to residential services, we have been told testimony regarding day services is also appropriate at the hearing.

If you are concerned by any of the above please come to the hearing. We ask that you wear red.

To learn more, please go to www.visionsofcommunity.org