Susan Senator

In Massachusetts there is a program called Shared Living, which is a good way to create an independent living set-up for your loved one with a fairly significant developmental disability. Shared Living is more of a community model, a more Self-Determined, Person-Centered model, whereas Group Homes can feel a little more isolated, perhaps more institutional, and are much more costly to sustain. Shared Living is basically a caregiver living with the person with the disability, together, in the caregiver’s apartment. The caregiver gets a stipend from which he pays rent and the disabled person contributes to the rent from his SSI check. The stipend can be adjusted using funding that the disabled person receives from the state Medicaid Waiver agency he is served by (DDS, Mass Rehab, etc.).  Sometimes people combine Section 8 low-income housing with the Shared Living model to help get an affordable apartment.

I am attaching a description of Shared Living and of the Roles and Responsibilities of the Provider (Caregiver) that I got from Advocates, Incorporated of Framingham, Massachusetts. Advocates is one of many service providers, and I particularly love them.

If you are not in Massachusetts, call your Department of Developmental Services or other state agency, or a service provider you know of, and ask about your state’s equivalent to Shared Living. Another Shared Living alternative is also Adult Foster Care, or Adult Family Care, which in Massachusetts is administered through Medicaid. Again, ask your state agencies about what Medicaid might offer, and what your loved one may qualify for. AFC is similar to Shared Living.

Great story in the New York Times about a man who helps train folks with autism in employment. Jay Goltz, writer for the New York Times, desribes how Dave Geslak owns a small business, “Exercise Connection, a company in Chicago that works with children who have autism. Dave has discovered that the structure and routine that his students learn from exercise build confidence, which can be a gateway to getting a job.” (NYTimes, “On Hiring and Autism,” March 19, 2014). Read the story here and then think about the many less-known routes there are to the goal of employment and our guys.

I have just discovered something kind of important (to me). Almost every day at some point I start getting anxious but also yawning. I almost start to panic — I don’t know why. I feel like I want to connect more with people but at the same time I can’t face that. Some days this feeling overtakes me to the point where I can’t work, I can barely function other than to do chores like laundry and cleaning. I start to get sad about this feeling. Why does this keep happening, I think. What is wrong with me? Nothing is wrong — in fact many things are very right and good —  and yet I cannot feel that. I feel like something is very wrong at those times and I eventually escape by lying down.

On some days, like today, my consciousness allows in the realization that nothing is wrong but that this is just a powerful and seemingly uncontrollable feeling that I do not like. It interferes with my ability to work. Sometimes it interferes with my desire to go out and live my life. So today I let myself go lie down without judging it, without thinking, Here it comes, that bad feeling, what is wrong with me…

And 40 minutes later I thought suddenly of something I wanted to do, in this case, eat some hot soup and my favorite salty rice crackers. The desire to eat was strong enough to push me out of the depths of my bed.  And just now I had an ephiphany:  I think that lying down in our soft bed with its thick snowy-white covers is my version of a hug-machine a la Temple Grandin. I lie there snuggling, burrowing my face into my pillow but not sleeping, even knowing I’m not going to sleep, and I feel myself calm down and return to my sunny, functioning self. I can feel my heart rate slow down. I notice sunlight coming through the window on Ned’s side of the bed. I feel the tiredness leave me. I get to a moment where I can throw off the covers and face the inevitable cold air. I stand up, I go downstairs, I make soup.

And I can write again.

My friend and fellow autism advocate Michael Forbes Wilcox has a fascinating mind that many of my readers would like.  Michael was diagnosed with autism/Asperger’s in his 60’s, and with that diagnosis, found a tremendous sense of relief. I hope I’m getting this biographical bit right but what I think he told me is that so much that troubled him about his interactions with others, throughout his life, so much of his difference, was now explained, and so getting the diagnosis was a watershed experience for him. Michael has never accepted autism as any kind of disorder or illness, but rather, as a clarification for his perceptions and sensory and social struggles.

I am mentioning Michael now because I don’t know if I have talked about his philosophies here, but they are very cutting edge Autism Thinking. Michael goes beyond neurodiversity in that he is one of the strongest proponents for understanding autism as a neurological difference, and so that any deficits people may have are part of that difference, to be dealt with, accommodated, learned from, or accepted — but not treated.

This latest blog post of Michael’s was particularly interesting to me because he takes a new bit of autism research done by Vanderbilt University, and he points out flaws in the study that the general public may not notice. Because Vanderbilt approached the study of autism as a disorder, as basically an undesirable way of being, they have nullified their findings. He points out how people with developmental delays have atypical development, meaning they may be faster to acquire skills in some areas, and slower in others, so that chronological peer comparisons do not apply here. Here is his best quote:

Sometimes it feels like it’s all autism, all the time for me. Most of the time that takes the shape of advocacy work of one sort or another. Yesterday I was filmed along with NY Times Pulitzer Prize-winning journalist Amy Harmon for the PBS show America Reframed in a discussion about Turning 22 and the documentary Rachel Is. Rachel Is takes us into the 21st year in the life of intellectually challenged Rachel Glynn as she turns 22, and features her mom Jane, and her sister Charlotte (who directed the movie). The movie lays out very poignantly and honestly (sometimes cringingly so) a family’s struggle with not knowing what will happen for their developmentally disabled loved one — where she will live, what she will do with herself.  The film ended happily for this family but the viewer was left with the solid weight of responsibility we have as a society to spread that kind of good luck around. Hopefully when the general PBS-viewing public sees this film they will now see Our Guys like never before. And seeing is believing.

The whole time that I sat there on that set I was straining to remember every single thing I needed to say for Our Guys. By “Our Guys” I mean autistic or developmentally disabled young adults who need support to live any kind of basically decent life. I mean guys like Nat who currently need life skills support, job coaches, jobs, housing support, educational support. All the areas of life that we typically developing adults may take for granted. I hope I got it all out. The opportunities to share stuff with the public and to get them to think beyond their own concerns are very few. I try to create such opportunities with my writing. I am always hoping that someone who doesn’t know, or who doesn’t get it, will hear me or read me and a light will go on. And that light takes us all a little bit more out of the darkness — be it in the form of funding, program creation, employing someone with ID (Intellectual Disability) or ASD, (Autism Spectrum Disorder) or just plain trying to connect personally with Our Guys. Or maybe the next time they hear someone disparage public support for Our Guys, they’ll try to educate that person.

Today my work came in a different form but was basically the same. There was a gathering at Brandeis University of parent advocates and a few state representatives from Massachusetts, as well as a representative from the Executive Office of Health and Human Services (which controls our Department of Developmental Services, DDS). There was a very lively and fruitful dialog for 2 hours about policy and practice in terms of adults with ID or ASD. Again, I was sitting up straight, focusing all of my brainpower on what was being said, looking for opportunities to interject, to push the conversation towards creating a system that Our Guys can navigate. The pieces I contribute are usually around vision, of looking at what is and asking why or why not? I’m not as good at speaking to the nuts and bolts programs we already have, but I’m getting better at the alphabet soup and jargon out there.

I think I have figured out that my strength is in taking a problem and casting it in terms that most people can not only grasp but connect with. I like to illustrate the problems honestly, but to also find the hope that you can find underneath if you rub away at the tarnish of heavy bureacracy and close-mindedness.  People need to hear what’s bad about what’s going on, but they also need to see what is good and what can be better. A different perspective is hard for us to grasp — at first — but once we have been spun around to see, sometimes it is the only thing we can see. Welcome to my life.  🙂

If you live in Metro Boston, come on down!

A Full Life Ahead: What Makes A House A Home

What: Advocates is joining forces with Massachusetts Families Organizing For Change to present their popular event series, A Full Life Ahead, at our Life Skills & Learning Center in Ashland, Mass. The series focuses on transition, employment, housing, friendships, and other topics that will lead to interdependent, full lives in the community for young adults with disabilities.

Join us for our first workshop together, “A Full Life Ahead: What Makes a House a Home?” Parents, Robin Kantrowitz and Susan Senator, will discuss challenges and successes of setting up and maintaining living arrangements for their sons. Jeff Keilson, senior vice president at Advocates, will discuss a variety of options including Adult Family Care, Shared Living, and group homes.

When: Tuesday, March 4, 2014 from 7 – 9:00 p.m.

Where: Advocates Life Skills & Learning Center 290 Eliot Street Ashland, MA 01721

Contact: Please RSVP to FamilyServices@AdvocatesInc.org or call (508) 628-6801. Space is limited!