Susan's Blog

Saturday, March 7, 2015

All three sons are home!

2015-03-07 13.03.15

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

Saturday, February 28, 2015

Asking for, needing, help

I remember once, when I was in first grade, Mrs. Newman had us write all the numbers up to 100 and beyond. I can see the lined paper in front of me, and the fat pencil with its silver rounded match-head size tip gripped in my chubby hand. I wrote the numbers, “1, 2, 3..” I thought ahead and realized that I did not know what was after 100. Mrs. Newman was mean and so I knew I could not ask her. Everyone was writing their numbers and I asked to go to the bathroom. I left the room and just hid outside the classroom door for the rest of the period, my stomach in knots, because I just did not know those numbers and there was never any help, anywhere.

I still hate numbers, math, my old school, and especially that feeling of not knowing something everyone else seems to know: that feeling of being cut off from the others, floating, looking in from the outside. Loneliness, stomach ache, desperate to go and cry.

I was lucky enough to be able to arrange my life so that I am rarely ever in that position anymore. Because I still hate to ask for help. It’s amazing to me how quickly that teary choking feeling rises up when “I don’t get it.”

Most people probably don’t like to admit they need help. I guess there is shame that gets attached to it somehow. So I wonder how someone with a disability, who often needs help, feels about this. I wonder how Nat feels about his dependency on others.

I also wonder how Nat feels about the fact that so many people around him assume he needs help. This came up recently at a medical office, a practice I knew a lot about and was considering for Nat. I liked the way they were trying to think about adults with autism, to offer services beyond childhood.

Yet immediately I had to fill out paperwork that was all about “my child.” His year in school. His classroom therapies. His siblings, anyone else “in our home.” Nat is 25. He’s been out of school for years and he does not have therapies nor does he live in our home. Okay, I filled it all out anyway. But then the nurse came and chirped “Nathaniel?” and off we went.He was asked to take off his shoes, and asked if he could take off his shoes himself. He could. “Great job, Nat!” He was asked if he could step on the little red footprints to be weighed. He was congratulated for getting that right. He had to get his blood pressure taken, “This little band is going to squeeze your arm!”

At this point I wanted to squeeze her head but I said, “Oh, Nat is fine with being in a doctor’s office,” and I said it in a trailing way that invited Nat in to the conversation. He said nothing, but I felt that at least I had opened up the circle for him.

Similarly, when we were meeting with the doctor, I got ready to work out how to ask and answer questions about Nat with Nat right there in the room with us. I want to include him, but I know that he cannot always/often access the accurate responses about his health and life. My solution is to listen to the doctor’s question about his sleep habits for example and then answer, saying, “Nat, I think you sleep well these days, do you?”  Or about diet “Nat, you like most food, right? What did you eat today for lunch?” I try to give him a way into the conversation.

The doctor was better than the nurse had been but there was still that cringing moment when she said, “Great job, Nat!” after he’d answered a question, as if he’d discovered the cure for the common cold. I wanted to ask her, “How would you feel if someone squealed, ‘Great job!’ to you like that?” But I didn’t. Instead, I tried to show her another way. At the next opportunity when Nat responded to something, I said in a normal voice, “Nat, I like the way you’re talking to us.”  Just a small noticing, then we just moved on.

It’s hard enough being unable to keep up with everyone in the room — especially when they are talking about you. But Nat doesn’t withdraw in shame like I did/do. Nat just soldiers on,  listening carefully though appearing “in his own world,” talking to himself “stereotypies,” as the doctor put it. “Expressing himself,” as I put it. Thinking his thoughts.

But nothing proves it to you until that smile of his breaks loose all of a sudden, and his eye flickers at yours for an instant. Seductive in its powerful intelligence, he is almost winking at you across the room. If you are one of the lucky ones, it will stop you cold, and you are humbled.

Friday, February 27, 2015

My TV Appearance: Vaccines/Autism

On Thursday night (2/26/15) I appeared on New England Cable News (NECN) with Dr. Ben Kruskal, Chief of Infectious Disease at Harvard Vanguard, in a show on autism and vaccines: “Measles and Misinformation.” I presented my view as a parent who at one time had been afraid to vaccinate my child, and who subsequently learned the science and the facts about the safety and necessity and civic responsibility regarding vaccination. You can watch it here.

Friday, February 20, 2015

Important Workshop, Framingham, Massachusetts

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.

Friday, February 13, 2015

Life College Director Job Posting: 3L Place

My friend Deborah Flaschen founded 3LPlace, a whole new concept in post 22 living, located in Somerville, Massachusetts. Their slogan is: Learning, Living, Linking Adults with Autism and other Developmental Disabilities

3L is booming with success and growth! They are now ready to hire a Director for the Life College. Here is the description of 3L and the job offering:
3LPLACE LIFE COLLEGE DIRECTOR – JOB POSTING
Somerville, MA
3LPlace is a dynamic, model community for adults with autism and other developmental
disabilities designed to empower them to live fruitful, engaged, and supported lives over
their lifespan. The 3LPlace Life College opened in November 2014. The Life College is
the first point of entry to 3LPlace. It is a two to three year residential instruction program
focussed on developing capabilities and skills needed to live a productive, satisfying,
healthy, and connected adult life.
The 3LPlace Life College is a12-month, 24 hour/7 day a week program. For the most
part, Students/Members enter throughout the year, as they turn 22 years old. Once students
complete the Transition Program, they will participate in 3LPlace’s Community
Program, or the 3LClubhouse that serves individuals over the lifespan. 3LPlace’s Life
College plans to grow at a rate of approximately six students per year, until it reaches a
maximum of 20 full-time students. Our Community Members program may grow a bit
faster as both graduating Students/Members from the Life College and Members from
outside the Life College are welcome to join. The number of Members in our Community
Members program will be approximately 120 at maximum. However our 3LClubhouse,
a part-time drop in program will enable us to engage a larger number of total participants.
The Board of Directors is seeking a highly qualified, dedicated professional to serve as
Director of the 3LPlace Life College and help it flourish in the years to come.
The 3LPlace Life College Director will be expected to provide management leadership
for the Life College community including the implementation of our innovative, multidisciplinary
Transition Curriculum. The 3LPlace Life College Director will be responsible
for coordination of this curriculum, student recruitment, as well as staff hiring, supervision,
evaluation, and development. The 3LPlace Life College Director will have an initial
staff of 11, of which 4 are direct reports. The staff at 3LPlace is expected to grow
significantly as student enrollment grows.
The 3LPlace Life College employs a Director of Developmental and Therapeutic Services
and utilizes an outside consultant to further advise on therapeutic, instructional, and
curricular elements of the Life College.
The 3LPlace Life College Director will play a key role in the evolution of 3LPlace as it
expands from a Life College for transitioning young adults into a robust community for
lifelong learning.
Successful candidates for this position must enjoy developing relationships, teaching,
mentoring, and working in a creative, flexible environment.
RESPONSIBILITIES:
• Responsible for operation of 3LPlace Life College program and facilities: supervise
staff of 11 people, with 4 direct reports (staff size will grow significantly
as enrollment expands); ensure stream of potential Life College participants; supervise
student intake process which includes a thorough-going student and family
application, evaluation, and sometimes financial aid process in an effort to assure
student body diversity and best fit for 3LPlace Life College.
• Serve as chief of staff, providing direction, supervision, staff training and development
for program and support staff.
• Give vision and leadership to the strategic and day-to-day program implementation
of 3LPlace Life College.
• Provide leadership in developing program, organizational, and financial plans
with the Board of Directors and staff, and carry out plans and policies authorized
by the board.
• Prepare and monitor the annual budget for 3LPlace Life College.
• Oversee financial and quality management relationship with the Department of
Developmental Services (DDS) and other agencies of the Commonwealth of
Massachusetts.
• Ensure that the 3LPlace Board of Directors is fully informed on the Life College
and all critical factors influencing it.
• Establish sound working relationships and cooperative arrangements with
community groups and organizations.
• Represent the 3LPlace Life College to agencies, organizations, and the general
public.
• Maintain a climate that attracts, keeps, and motivates a diverse staff of top quality
people.
QUALIFICATIONS:
• Master’s Degree or higher in education or therapeutic discipline (i.e., social work,
counseling, occupational therapy, art therapy, etc.)
• Significant experience required preferably with young adults with developmental
disabilities.
• Supervisory, general and financial management, and leadership experience
required with proven track record
• Experience working with volunteer boards
• Strong communication, conflict resolution, and decision making skills
• Ability to work in a flexible, ever changing environment
SALARY AND BENEFITS:
Compensation (plus benefits) commensurate with experience of applicant and consistent
with that offered by growing, vibrant non-profit entities.
CONTACT:
Deborah Flaschen
President, 3LPlace Inc.
dflaschen@3LPlace.org
617-566-5262
3LPlace.

Wednesday, February 11, 2015

Vaccines Save Lives

Here is my piece for NPR’s WBUR/Cognoscenti column, about vaccines and autism. I tried to take a nuanced and reasoned approach. I ain’t no troll. But truly: vaccines save lives.

Sunday, February 8, 2015

Vaccination and Autism

I’m going to be live on NECN New England Cable Network News at 6pm EST Monday February 9. It streams at necn.com as well. The topic is the safety of vaccine. I am absolutely in favor of people getting vaccinated. It saves lives. It does not cause autism. In every medical intervention, there is never 100% good response. There is always risk. But the risk of spreading measles and destroying herd immunity is definite. Autism is hard, death by disease is far worse.

Saturday, February 7, 2015

Nat’s longest conversation

…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

Wednesday, January 28, 2015

The Young Autistic Man Who COULD

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

Wednesday, January 14, 2015

Waiting for the light to go on

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.

 

Tuesday, January 6, 2015

Breaking News: Congress Aiming At SSDI

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.

Sunday, December 28, 2014

I am Nat’s Ghostwriter

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.

 

 

Thursday, December 11, 2014

What Matters Most

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!

2014-12-09 20.26.37

Sunday, November 23, 2014

Fragile Talking

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.

 

Thursday, November 13, 2014

PLEASE HELP: MISSING

Kaleb Gaudinier, Missing from Clinical Support Options Respite in Florence, Massachusetts. He weighs only 110-115 lbs. and is in a fragile state of starvation and dehydration. He was last seen on 11/12/2014. He is 5’10” and is a white male. He was last seen wearing a black hoodie sweatshirt and black sweatpants. He is autistic and may shy away from people.

Please contact his family at 603-762-7809.
Ted Myerson©2013

Thursday, November 6, 2014

Self-Determination Should Precede Integration

“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?

 

 

Wednesday, November 5, 2014

Massachusetts: DDS changing Medicaid-based rules

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

Sunday, October 12, 2014

The Circle of Friends

I was in the lobby when those first notes from “Circle of Life” broke through at the autism-friendly Autism Speaks-supported Lion King at the Boston Opera House. I was standing just outside the doors, as Main Floor Navigator, in the lobby with the actors about to walk through the doors onstage. They were the animals coming to see the new baby Lion. I stepped backwards to give them more room. I felt like a child allowed to be at the adult party. All around me the actors had their costumes half-on, with the masks on the floor, at their feet. Huge hairy water buffalo heads rose from the ground like monoliths; a ghostly translucent giant rhinoceros, made of blue grey papery ribcage and thick tree-trunk legs materialized off to my left. They all tensed at that first call; then there was a velvety hush in the lobby, and they answered as one, a capello, angel-like,,getting into their roles, summoning all that clear, half-whispered awe in those syllables. The doors opened, and they strode into the theater, through the audience. I felt chills, and tears sprang to my eyes. A profound beginning, but also, so many memories swirling around me, carrying me away on their sweet tide. My first two babies,Natty, 3 1/2, and 18 month old Maxie, sitting in the backseat of our little red Honda Civic hatchback at the Wellfleet Drive-In on Cape Cod. It was Max’s first movie.

The animals all sang to their new tiny king to pay homage, a blast of brilliant hue, animal shapes, a cacophony — really a symphony of cries, so loud, so moving — filled our ears. Then, as if a plug is pulled from a bathtub, the sound is sucked away and it’s all dark.

“What dis movie?” Little Max asked me, thinking that the opening scene was the entire film — it was that huge to him. Oh Maxie! You were so little you didn’t even know that. Even then you were fascinated with film. Who knew you’d grow up to graduate from NYU’s Tisch School of the arts, a camera artist, a budding cinematographer?

But I’m getting behind — and ahead of myself. Yesterday Max wasn’t there, but Nat was, now almost 25. Wearing the same oversized yellow lion face tee shirt as Ned and all the other adult volunteers. We were all there to navigate, assist, calm, and bask in this beautiful Autistic Assembly, this army of parents and caregivers, for once not fighting bureaucracy, school systems, or sad wistful taunting dreams. They were there, at peace, accepted and loved. Some guys didn’t make it through the next scene. Ned told me parents would come up to him, he was an usher, and say, “We just have to — ” And he’d say, “It’s okay,” and point the way to the calming room, or the exit, or the bathroom. One friend came out with her grown son (who had her very same face) (I’d never met him, I got to meet so many of my Autism friends’ kids). This friend said to me, “I think we’re going to declare victory…” Ned turned to me and said, “Was she thinking of my words?” So long ago, Ned had come up with our family mantra: “Declare victory, then get the hell out.” Meaning, we, the family, would set the terms of success. We would decide how much of this moment in time we could get through and then we could leave feeling triumphant.

Yesterday we were all triumphant. The Opera Workers seemed delighted. The actors hummed with their energy and ours. The “regular” world had met us and welcomed us. We were surrounded, and embraced, by a Circle of Friends.

Friday, October 10, 2014

My Facebook Troubles

Okay, and here is my latest Washington Post Oped, about my troubles with Facebook. It’s all true, bro. Yeah, it’s already up on FB, too.

The Untapped Potential: Autistic Adults

Here is where you can find my latest piece for WBUR-FM’s “Cognoscenti” column, a propos to President Obama’s recent authorization of $450,000,000 in grant money to community colleges that partner with employers.

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