After the past 3 years of sleepless nights agonizing over the injustice of insurance companies and their discriminatory refusal to cover treatment for Autism, I am somewhat hopeful we may have a chance for reform in Michigan. In this interview, I think I am the voice inside Brian Calley's head that is prompting him to speak. I'm not sure I have these powers all the time- it might be a fluke entirely- but it's the truth. Ok- the truth is I don't have powers of any kind except the power of advocacy and passion. Brian Calley was speaking my language because he is one of us 'normies' that has a kid with the A word. He realizes that being from a small town resources are non-existant, he also realizes the insurers discriminatory practices have created a lack of service providers throughout the state of Michigan. This has also had devastating consequences in rural areas for people with Autism. If insurers don't cover treatment for Autism, then who can afford to provide the treatment. Do people think therapists work for free?? Pretty much parents are working to cover autism treatment and that is why I can't sleep at night.
The reasons I can't sleep are many- one of which is because H has the A! Did you know kids with Autism can often times suffer from insomnia and faulty melatonin production?
When H was 2 I had a worse time sleeping because of the worry associated with fear and anxiety of WHO was going to help us. WHO was going to provide speech therapy, OT, ABA, educational support, behavior support? Ummm..the answer was pretty much- nobody! True story- We only had 1 qualified SLP in the region, 1 qualified OT, no ABA consultants to speak of, behavior support? What's that? Nope, nada, nothin'. This was all because of insurance......I had a talk with the BCBS guy once, he told me it would be too expensive if they covered therapy...FOR KIDS!
I also have a hard time sleeping because I see all the families affected by Autism in the northwest michigan region- to date we have approximately 310 familes...that's a lot of people affected! Autism not only affects 1 person- it affects FAMILIES! Being the Presidante of Autism Resource Network I have phone calls every week from scared parents who want to know where to go for help. I got nada...nothin, nope, nada.... I have to tell them "sorry, I don't have any referrals but if you come to our parent meetings every month at least we can support eachother"
Most disturbing- working at my job doing home visits for little ones, having a Mom cry to you because her little boy isn't talking and exhibiting signs of Autism. What do you tell her? Where does she go? What do our local pediatricians tell their patients? They got nothin'....no ideas...they hold off on a diagnosis or guess because they are just as stuck as everyone else...
GRRRR....more reasons! Our schools are completely unable or qualified to do medical therapies and parents believe they ARE!! Completely untrue! So many parents are fighting, battling, angry, MAD AS HELL, because their kids aren't getting better because many people in 'da bidness' down in you know where (if you live in Michigan- you know where I'm talkin' about) think Autism is an 'educational problem' and should be addressed in the schools. True story! In my world we call this 'Old School Special Ed" meaning this is the belief before empirical peer reviewed studies showed the progress of people with Autism through therapies like Speech, ABA, OT behavioral and other therapies. Yes...medicine has advanced and now it's time to adopt a new way of looking at people with Autism.
Last but not least....I know this might be a shocker to most, especially my doubter brother who laughed when I last called myself "a person of faith"...hahaha... On the moral issue of abortion- (dum..dum..dummmmm) Disclaimer (I am probably ruining any chance of running for office now...damn!) I don't admit or adopt a political party affiliation because I don't believe it's anyone's business.. Yes, I am proud to be Catholic and the best part is I am a human being who believes it is our moral obligation to take care of our most vulnerable citizens- children! If people use politics to lobby for Pro-Life efforts then how can they deny people with disabilities the medically necessary treatments they need to live a productive and happy life? Yep, I said it...the Priest endorsed it- he agreed it was all about greed and I agree.
So...you probably won't read this lengthy, wordy, crazy post to the end...but if you do and you live in Michigan, call your Senator and tell him "Marlowe is getting tired of chasing you around the state complaining about Autism!" (I am kidding- but you could say that if you want) Tell him he has nothing to loose because supporting kids is a win-win situation and it's really the right thing to do. I'm not sure Northern Michigan Senators support our legislation- I've never really gotten a clear answer but it would sure be nice to know wouldn't it?
Never in my life have I ever had to put my family, reputation, or integrity on the line but I don't care anymore- what have I got to loose? Money? Got none- paid for therapy and my grandchildren's grandchildren will continue to pay......and the A word marches on....