Katie Beckett Medicaid Ridiculousness

For those of you who have no idea what I am talking about, be thankful. For those of you who do, you know exactly what I mean by ridiculousness.

A little background information for those of you who are fortunate enough to not know what Katie Beckett Medicaid (formerly known as Deeming Waiver) is. Because we have private health insurance (we pay for it, and it is not provided by our employer), the insurance company can chose to deny coverage to anyone for basically any reason. In Cohen's case, he was born with the pre-existing condition of Down syndrome, so our insurance policy would not cover him. That means no medical coverage for him. At all. So, years ago, there was a lawsuit and a type of medicaid was created for people with certain conditions to be covered under medicaid regardless of the family income. Trust me, if I could pay for an insurance policy to cover him, I would. Medicaid approval is the most time consuming, frustrating thing I do for my son.

But, unlike insurance, where you keep it as long as you want it; Katie Beckett Medicaid must be renewed every year. Ridiculous, right? Nothing changed. He still has Down syndrome. Our insurance still won't cover him. I can expect that envelope every spring to come. That envelope means hours of paperwork for me, his pediatrician, therapists, etc. because while we strive daily to prove to the world that Cohen is smart, capable, and making excellent progress, we have to prove what Cohen can't do to continue his coverage. We have to prove how far behind he is as compared to typical peers. Wow. That will really make a mom feel good.

About two weeks ago, I received a letter from DFACS reminding me that it is time to renew and it gave me an online form to complete. Hmm. That has to be easier than the paperwork I had to complete in the past. I logged on, spent an hour or so answering questions and filling out forms. Easy enough.

Then, yesterday, the envelope arrived in the mail. Great. Just what I have time for- hours of paperwork, running around having the doctors and therapists fill out paperwork and picking it up- instead of planning field day, pre-k graduation, Mother's Day, my husband's birthday. And the worst part of it all- the questions and forms that I spent an hour filling out are included in the paperwork to be filled out again. I nearly lost it when I read through that. Seriously? Could they not use what I filled out online? Needless to say, I am ticked off.

So, now I will be spending hours filling out forms, typing narratives, running to and from collecting therapy notes, delivering doctor forms, etc. All because my son has Down syndrome. All because this system can't use common sense and note that since nothing has changed with his condition and prognosis over the past year, there is no reason to make us all go through the hours of paperwork AGAIN.

Last year, I added up my time spent on his application. I spent over 30 hours working on the 137 page packet that I sent in. Tell me, who has time for that? I sure don't. But, blogging about it isn't going to get it completed. Time for me to begin filling out the 28 page packet that I received in the mail yesterday. Time to email his six therapists for copies of therapy notes. Time to prepare forms for the doctor to fill out. Time to type his narrative. Time to make copies of the psychological evaluation from last year. Time to make copies of his IEP.

Be glad you have never even heard of Katie Beckett Medicaid.