Susan's Blog

Wednesday, July 25, 2012

Real Lives Require Realistic Laws, Policies, and Attitudes

Talk show host Joe Scarborough may have issued a so-so apology to the autism community for his unsubstantiated, offensive remarks trying to tie the  Colorado Tragedy to the Autism Spectrum, but to me the real news is that we here in Massachusetts have the opportunity to do some actual work towards improving the lives of those with ASD. “Work towards improving…” are not interesting words to get you worked into a lather, and neither are “call your state rep,” but those are words that actually matter. It’s one thing to sit in a comfy chair in front of a camera and millions of similarly sedentary viewers and whip people into a frenzy over your own ignorant views. It’s quite another thing to be an elected official and sit down over a crappy pizza dinner on shitty creaking plastic chairs with parents who are not even your own constituents, just to learn about what specific improvements should be made in the lives of autism families. But this is what Ashland Respresentative Tom Sannicandro did Tuesday night at Advocates, Inc. in Framingham, with a bunch of fierce autism parents of adults, including Autism Housing Pathways founder Cathy Boyle, Metrowest Autism Alliance Executive Director Nannette Ohman, other ass-kickers, and me.

(Before I go any further, I will say that it is likely that none of the people at this meeting had autism, although of course trees don’t grow far from their apples, so… but I do often hear “Nothing about us without us,” so I feel the need to address this. Yes, it is true that autism adults who can advocate for themselves should always be part of meetings about autism services. But for those who cannot yet do so, their guardians, caregivers, and loved ones will do this for them. We cannot make wholesale dismissals of meetings that are “only” parents, because if the parents are doing the advocating — and to advocate well for your autistic loved one, you must stay in the closest contact with him to understand what he wants and needs — if the parents are doing the advocating, they are valid representatives. . As much as we all dearly wish that our autistic loved ones could be the people at this meeting, saying clearly what they want and need, it is not realistic. We need to listen carefully to our children and figure out their needs, and then we have to reliably convey them at meetings that cannot logistically accommodate them. We parent advocates need to listen to what autistic adults and our children say and need, and our children — and the autistic adult community — need to listen to what we have to say, too. We live with autism, too.)

Sannicandro told us he was there to learn about autism transition and adulthood for a paper he was writing; the state rep is in a program at Brandeis that is funded by the Lurie Center, all for the purpose of improving services and access for those with autism. But Sannicandro is one of those stellar leaders who wears most of his hats all at once:  state rep, student of autism, father, special needs attorney. He is a Force for the Good, make no mistake. (You can contribute to his campaign here, by the way.)  So we knew that whatever we told him was going to spread into the State House, too.

“What would you change right now to improve the lives of autism adults and their families?” Sannicandro asked us. The list was short but thick: 1) Have one clear, consistent entry point into the system, from the day of diagnosis throughout adulthood. Open up the silos. 2) The money should follow the person*, rather than where he happens to live (meaning, the Regions should not get to dictate where the client gets to live, but rather, the client’s needs should dictate this).  3) Funding should be according to functioning level and need, not label or IQ. Funding should be person-specific, not label-specific. 4) Funding should be portable, between Residential and Family Support. In other words, there should be a sliding scale of funding from Full Residential all the way to In-home Support. It should not be one or the other. Currently the system is: if you have Residential funding, you are fairly well set in terms of support money. If you don’t, you have A LOT less.  Either you are Priority One or you are NOT, and then God help you. 5) There needs to be a road map, a timeline, some kind of chart that families and school systems and DDS’s follow so that proper planning is done. By age 14, no later, Team meetings should be discussing independent living skill-building and vocational training, NO MATTER HOW “HIGH FUNCTIONING” THE STUDENT IS. I don’t care if you are autistic and you get high honors every time, if you’re college-bound; if you can’t understand how to pay bills, how to ask where the restroom is, how to cross the street safely, how to speak to people politely, etc., YOU WILL NEED SUPPORT AND THAT COSTS MONEY.  Kids should be trained almost from day one to be as SELF-SUFFICIENT AS POSSIBLE.

How can this list of needs be met? *Funding Follows the Person: The Real Lives Bill, H167 (was H984), would address some of this effectively. The principal behind Real Lives is that the supports, services, and housing should be dictated by the needs of the client, not the State. Only then can we have true self-advocacy. Or as in the case of a guy with Nat’s particular issues, self-advocacy with a parent/caregiver liaison.

Here is what the ARC of Massachusetts has to say about Real Lives:

The Real Lives Bill empowers people to make decisions that are deeply personal and central to how they live their lives.

The Real Lives Bill lets people choose where they live and who they live with. It lets them choose the people who they want in their lives and what type of relationship they want to have with them. The Real Lives Bill helps people with disabilities be a part of their communities.

Right now, many of those personal decisions for people with developmental disabilities — decisions that most other people take for granted — are determined by other people. The Real Lives Bill will allow those individuals who choose to participate in self-determination to take control over those choices. It does it in a responsible manner, giving individuals the support they need to make these difficult decisions.

The Real Lives bill makes self-determination available for all people who are receiving services through the Department of Developmental Services. It utilizes a person-centered funding model for the services they are receiving. This funding model is innovative, cost-neutral, and one that this state and the federal government is already moving towards.

The passage of the Real Lives Bill would represent a fundamental shift in how we perceive people with disabilities. It expresses a confidence in individuals with disabilities as self-advocates whose own desires and interests should be central to their plans and their lives.

We need to get our State House to pass this bill in the next few days, and then we will be on the road to facing the present and future for our ASD loved ones. The current system is unfair and often completely bypasses what the individual needs and wants (especially if they lack parent/caregiver advocates). As Cathy Boyle, one of the wisest women in the state, said, “This is a homelessness/prison population waiting to happen.” We have thousands of spectrum kids coming up through the schools in Massachusetts alone. The schools can only take them so far. We need real solutions now.  If you live in Massachusetts, call your state rep and your state senator, and make sure they have signed onto H167. Your autistic child will thank you — one way or another.


This post of yours is very important. The thing I would add is such supports should not only extend to persons with autism, but also to those with any other intellectual disability.
There are many of us whose children don’t fall into one (comparatively) clearcut diagnostic category (e.g. autism or Downs), but who are nonetheless disabled and need all these supports. Your clear and consistent entry point and pathway, from the date of diagnosis, should apply to all diagnoses not only autism.
Thanks to the larger numbers and tireless activism of autism parents, it’s great that that this condition is on the map and well recognized. Other conditions, not so much. It seems each splinter group has to fight a separate battle and reinvent the wheel for each group.
I wish this was not the case.

— added by S on Wednesday, July 25, 2012 at 11:38 am

How do you do it?
I don’t want to be the one following the path you blaze. I want to stand up, get involved, right the wrongs…. I’m so damn tired.
Ben’s 7, and I’m not (45)which isn’t old….. I just don’t have the energy to ride 15 miles, and then ride the backs of beuracrats that don’t care/understand/see the human lives they are affecting.
So greatful you do… and I’m going to keep reading, writing the government/celebs/whomever to try and make a difference. I know one day I’ll have had enough… and then…..I’ll buy a bike and see what happens.

— added by Jacquie on Friday, July 27, 2012 at 11:56 am

Now, Jacquie, don’t get all tired and worried. The bike is my fun. Just find yours, is all I’m saying. And yes,keep reading, writing the gummint, etc.

— added by Susan Senator on Friday, July 27, 2012 at 12:08 pm

The Arc has been setting the groundwork for the Real Lives bill since I started there in early October. I am hoping that both houses of the General Court passes this bill with the Governor’s signature. There truly needs to be both universal health care access for people on the autism spectrum and greater accessibility for young individuals with autism to obtain employment and great employment resources.

— added by Scott Lentine on Saturday, July 28, 2012 at 11:23 am

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