Monday, February 23, 2009

Take Action for Autism!

As most of you know, a bitch’s older brother is autistic. Autism has been in the news a lot and there have been tons of features exploring how autism impacts a family…but one of things rarely covered is the economic impact and the lack of insurance coverage for treatment.

I grew up in a house where everything from a family meal to an outing to pick up groceries was a structured treatment…my parents tried everything and anything to try to help my brother adjust to the world.

Now that my sister and this bitch are co-guardians, we are working to try and make the world adjust more to my brother.

And looming over every option…whether a family has a young child or an adult with autism…is the issue of funding and what is or isn’t covered by insurance.

Well, we now have a chance to act through legislation that would reform the way the insurance industry handles coverage for treatments of autism spectrum disorder.

Legislation is being considered in several state including Missouri. Autism Votes is asking for folks to contact your legislator and let them know that insurance coverage matters and that you are watching.

Take a moment and visit the Autism Votes website.

Get familiar with legislation pending in your state.

And contact those charged with making decisions and casting these important votes!



Anonymous said...

Done and done and thank ya.

mai'a said...

so i have been dreaming about blogs. the first dream was about a blog called: raven’s eye

and as i have been thinking deeply over the past few days about these dreams and visions, i felt compelled to say this:

we, as women of color, have been organizing ourselves for years on the internet. we have started blogs, and e-zines, social networking spaces, list serves, conferences, conversations, groups, websites, cd’s and more. we are incredibly prolific, visionary, each of us coming to this space with individual and collective visions of self-expression, survival, sexuality, business, teaching, learning, community, organizing, solidarity,art, dreams, healing, and love.

in my visions i kept seeing a women and transfolk of color blog. one that was updated daily with our news, analysis, announcements, personal reflections, conversations, and more. a location on the net where we, from our different perspectives and lives, are able to give voice to us. where we agree and disagree, and stay in conversation.

i see this blog as a part of the ongoing organizing and expression that we do both on- and off-line so well in the midst of our crazy, blessed lives.

and so i am sending this out into the ether asking what you think.

are there others who are interested in building such a space for women and transfolk of color?

i can offer a chance to see if this experiment could work. i have some free time to dedicate to the building of this site. a certain amount of knowledge of software and a willingness to learn more. a connection to some communities of color. and a desire to build with you.

please distribute this where you think appropriate.

and if you are interested please leave a comment at

Anonymous said...

Wow Shark-Fu - I read you on Shakesville all the time, but didn't know about your brother. My son is autistic, and we blog about life with autism - although I'm sure we're at a very different place than you right now.
Adding you to the list!

Anonymous said...


I worked as a case manager for the state agency in CA that provides services to people with developmental disabilities. Every state should use its Medicaid funds like Cali.

First, they provide cradle to grave services for people w/ dev. disabilities. So, for example, in CA the state would give you a case manager who would: 1) fight with the school district on you behalf when they try to avoid providing services required by federal law. I have bitch-slapped so many schools during IEP meeting I've lost count. It would start off with them not wanting to even provide something basic, let's say an in-class behavioral therapist two times a week. Of course, the school says they won't pay for it b/c "it's not necessary". By the time I was done with them, the school not only had to pay for that behavioral therapist, but it was also shelling out the benjamins for occupational therapy 5x/week, a reading specialist whenever the fuck the family wanted it, the most cutting edge adaptive technology, and a once a week meeting with yours truly and the principal and every other member of the school's IEP team so I could make sure everything was proceeding smoothly (because if not, I told them they might end up in court fighting my recommendation that they pay for the child to go to a specialized private school). 2) set you up with respite care, which means that a) the state would give the family money to pay someone to come in every so often (the amount depending on need...and it was very generous) to take care of the person with the disability for awhile so the family could get a break (oh, and that person could be whoever you chose...a relative, friend, etc). b) the state would pay for daytime camps for the summer, or c) the state would pay for your brother to take a vacation to the destination of his choice (or the family's choice if your brother is non-verbal ). 3) What's that? You need to set up a conservatorship? No worries, here's a lawyer for free, at your service 4) You want your brother to live as independently as possible, you say? No problem. Here's an apartment (either his own pad or one he shares with another person with a disability, or a different set up depending on his needs), a nice lady who comes in as often as necessary to make sure bills are paid, meals are prepared, etc... And that's just the tip of the iceburg.

99% of the stuff you'd have to worry about in most states (taking him back and forth to the doctor, wading through all that annoying bureaucratic paperwork, dealing with his finances on a day-to-day basis, you name it), the state would do for you if you requested it. Feeling stressed with dealing with your own life plus having to be entirely responsible for your brother's life? Here's a therapist for you if you want it.

Hang in there, bitch :) There are people out there who care and who are on your side.

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