When you or a loved one has a disability, it shouldn’t take a pint of blood and several jumps through rings of fire to get the help needed to make things better.
I have a sister 13 years my junior who is autistic. I’ve lived the ins and outs of caring for someone with autism, dealing with all the social agencies, schools, day hab programs, group homes, medical issues, etc. When our mother passed away, I took on a new role of legal guardian for my sister. I never thought I’d be facing it all over again with my own child, but I am. At least it’s on a much smaller scale than what I’ve experienced with my sister. But it’s also so much more challenging.
Imagine you have cancer and it is recommended you have chemo to treat it. Makes sense, right? Have chemo treatment, possibly get better. Now imagine that you need chemo but can’t find a place where you can get it. There are waiting lists upon waiting lists. Then there are the facilities that don’t take your insurance, even Mass Health. That is what I’ve been experiencing in trying to obtain Applied Behavior Analysis (ABA) treatment for my daughter, who has recently been diagnosed with Asperger’s Syndrome.
The good news is that last year former Massachusetts Governor Deval Patrick signed a bill which would require MA Health to cover ABA treatment. Up until that bill came into play, MA Health didn’t do shit regarding ABA. The bad news is that, considering the bill was signed almost exactly a year ago (August 5, 2014), this supposedly isn’t going to go into effect until October. What I’ve been told by MA Health is that any ABA provider who wants to jump on the MA Health bandwagon has to call MA Health and tell them so. I guess the paperwork can take anywhere from 30-45 days to be processed. I understand that many ABA agencies have already gone through the paperwork. However, when I call these places, they have no idea what to tell me, other than this is going into effect in October. Some have told me that there is a waiting list a mile long. A couple have asked me to send them my daughter’s proof of diagnosis, which I have. I had one place really get my hopes up. They accept MA Health. I filled out all the paper work and then they told me that they don’t have any therapists in my area. And many of these places do take my private insurance. But there’s one problem: they don’t take my KIND of private insurance because my employer decided to take the cheap route and selected the “self-insured” plan for their employees.
So I continue to make phone calls and send emails. We continue to be put on waiting lists. We continue to wait…and wait. Meanwhile, my daughter still isn’t getting the help she needs. Thank God she doesn’t need chemo…