During lunch I sat next to some lovely people. One was with the Autism Society of Baltimore / Chesapeake. Another woman came all the way from Minnesota and represented a group of Somali immigrants who have an unusually high incidence rate of autism. We questioned each other over lunch about where we were from, what we were doing and, most of all, what worked for our kids. I was happy to see that we had several self advocates in our room. Not to get too preachy, but the autistic self advocates are often ignored or excluded when it comes to helping their community, so it was nice to see several autistic individuals there to speak their minds.

The Community Based Services session was run by Tom Perez, Assistant Attorney General for the Civil Rights Division with the Department of Justice and Henry Claypool, Director of the Office on Disability with the Department of Health. I was happy to see a multidepartmental approach, as community services biggest redundancies and waste is a direct result of the inability of various agencies to coordinate well.

Henry Claypool opened it up with short remarks, the upshot of which is that they were there to listen to us.

I was stunned. Nobody ever listens to us! We have to write emails, make phone calls, get 5 minute appointments between lobbyist visits and finagle crazy awards to give lawmakers just to get them to look at us! Tom Perez entered shortly after he started and reiterated that desire. All of a sudden I felt this was worth my time.

I’m going to list all of the Community Based Services ideas at the end of this post, and outline the other committee summaries in part 3. Before I get to that, though, I want to share an incident that I found both heartening and enlightening. The woman from Minnesota was giving her comments, some of which involved words like “fix” and “cure” when Katie Miller, one of the self advocates, blurted out “I’M NOT BROKEN.” She quickly apologized, but I smiled immediately.

Many of us parents want our kids to have the same opportunities that we had. It is hard for us to accept that autism, while life changing for our kids, is also part of who they are. “Curing” autism or “fixing” autism will fundamentally change who they are. I think its easy for us, as parents, to lose sight of that. I’m going to explore this subject more in another post, as it is one of the more divisive elements of the autism community, but suffice it to say that I was happy to hear her say it to a room full of people.

Anyway, after a few other folks piped up, I had my chance to deliver some remarks. I came on the heels of a woman from Pennsylvania who worked in adult services. According to their state census number, her department would have roughly 10,000 people with autism coming to her department for employment assistance over the next 6 years. Right now her department is funded for roughly 400 people.

I started by thanking Tom Perez and his department for their wonderfully damning letter to Virginia regarding our outdated and archaic institution system. I then stated simply that we need to invest in autism infrastructure now. There are already people who are in an overloaded system that cannot be scaled up. If we don’t change the way we do things and create a scalable system to meet the needs of the coming generation of folks on the spectrum they will graduate to the couch and our country will go bankrupt paying their disability benefits.

The full list of comments is below. Feel free to comment or discuss on them.

Training – We need a network of providers who are well trained and understand that autism is a spectrum disorder that presents very differently throughout the population

We need census data to better identify and serve the affected population.

Parent involvement and education needs to be ongoing throughout the lifespan, not limited to early intervention.

State laws need to be addressed as some therapies may be “illegal” or “opposed” by state regulations. (I’ve never run into this, but I only know about Virginia’s laws.)

Words matter. Removing language like “retarded” and “feeble minded” from state regulatory and legal language will help change the approach to treating autism. It will also create the cultural shift necessary to treat people with autism with equal rights.

Everyone needs to be reminded that autism is not a burden but an opportunity. The opportunity for change and understanding that autism gives us should be recognized.

We need better transition support for every transition, including elementary school to middle school, middle school to high school and high school to secondary education or into the work force.

The unintended consequences of medicaid eligibility are dehumanizing. The inability to save money for retirement or own a home naturally removes the medicaid population out of the societal mainstream.

We need to build greater capacity for community based services., especially housing.

Read Part 1 of this series: https://raynelsonrealtor.wordpress.com/2011/05/04/the-white-house-autism-awareness-conference-2011-part-1/

Read Part 3 of this series:https://raynelsonrealtor.wordpress.com/2011/05/06/the-white-house-autism-awareness-conference-2011-part-3/

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