Yes, so...how many times a year do you have to prove to varying agencies that your child is still autistic? I've counted at least 6 and all these agencies all report to the state in one way or another. And with my state's budget crisis, why can't they streamline this process?
Anyhow...our son qualifies for the Katie Beckett waiver so we can be eligible for Medicaid for his therapies. We first got the waiver when he turned two and since then, we have to prove every year that he's still disabled. This is fine. I get it. There are children who's symptoms improve and there is no need to provide services any longer. But for me I am just so overwhelmed with the IEP's, progress notes, respite paperwork, in home support meetings yearly and quarterly, requests twice a year for income statements, evaluations, and everything else to keep his services rolling. So this year I had a little bit of fun with the state with the help of his developmental pediatrician.
Yearly we usually do a phone interview to qualify for Katie Beckett. This is usually about 20 minutes spent answering questions about what my son can't do. But this year we had to do the face to face interview since it had been three years. Every year I am asked to send them copies of the IEP (Yes all 80 pages of it), all quarterly updates for the last year, and my favorite...a doctor's note stating his diagnosis and that therapies are needed because of the diagnosis. I would think they would catch on and realize that if a school is going to budget special services, hire a one-on-one aide, and write an 80 page IEP for your child, then we are certainly not faking his disability just for Katie Beckett. Or wouldn't a doctor's note be just fine too? And do they even read through the 80 page IEP? I have wondered.
The week before the face to face interview we met with my son's developmental pediatrician. At the end of the appointment I had asked her for this doctor's note.
"So what is this note for?"
"Its for the Katie Beckett waiver."
"Oh, usually these are written by the primary care doctors."
"Ya I know but since we are here..."
"No, that's fine...I can write it. What do you need me to say?"
Sigh, "Oh that he's STILL autistic and therefore he STILL needs therapy. The state still doesn't realize that autism is a lifelong disability so I have to keep proving to them that he still needs services."
She smiled "Oh I know." and nodded with approval. She gets it.
She turned to her prescription pad and began writing, handed me the script, and I folded it and tucked it into my purse. I thanked her and we had some friendly small talk and then my son and I left.
The following week was our dreaded face to face interview. My stress level was going through the roof! Were they going to put us in a highly inappropriate room again full of computers, printers, and cords for my son to play with and get frustrated with me because I couldn't keep his hands off it? Or were they going to implement my nasty feedback from that experience and put us in a child-friendly room with outlet covers and toys? Was the interviewer going to congratulate me on qualifying for Katie Beckett after asking all those horrible questions about what my son can't do. (I did tell them right after to never congratulate a parent on qualifying for Katie Beckett. Congratulations is when they don't qualify any longer.) Such bad history with me and the state.
So with all my paperwork in one hand and the other barely on my already overstimulated son, we walked into a crowded waiting area. Thankfully our interview was immediately after I walked in. But on an occasion like this any parent of an autistic child wouldn't mind their child displaying their worst behavior since this was to prove that I do have a child AND he has a disability. That's all the face to face interview is for. Phone interviews don't allow them to see your child so every three years you need to prove his existence because the IEP and doctor's notes aren't enough.
We walk into a small office and immediately I see the interviewer take a seat behind a desk that has a computer, printer, a can with lots of pens, a box of paperclips, picture frames, candy dish, and a vase of flowers. On the wall behind me was a digital thermostat. If we left with only a broken keyboard, numbers 13-19 written on every wall, and the thermostat programmed at 92, we'd be doing alright. I'm not one to notice the details of a room immediately upon entering but with my son I see everything he's going to touch.
"Umm, this room is not appropriate for my son. He's going to be after everything in here." I state as I'm holding his hand while he lunges toward the computer keyboard. He's now at the end of my arm jumping and pulling to get away and "play" with all the fun stuff.
"Well this is the only office that was available. Don't worry we'll be quick. And I'm not concerned if he breaks anything...I understand."
"Okaaay." So I let go of his hand and he swings the keyboard away from her and begins tapping the letter a over and over "A.A.A.A.A.". That amused him for less than a minute and he began pawing at everything else on the desk. He had his hands on everything even before we got to the first question. And by the time I had answered the third he was bored with the desk and had already climbed a chair to start pushing buttons on the thermostat. I just followed behind him trying to return things to order while answering questions. By the time he had crawled under the desk and began trying to unplug and plug back in the printer, the interviewer stopped the questions and said "I do see the challenge here and seeing his behavior I can easily answer the rest of the questions for you. Don't worry, you qualify for Katie Beckett...just leave the paperwork we requested right here and I'll do the rest for you."
Wow, did I really hear that? I was relieved since I was already exhausted from chasing my son in that little room. I handed her the paperwork and she quickly flipped through it.
"Do you have the doctor's note? It's the only thing I don't see."
"Umm....oh yes its in my purse." I had forgotten to take it out since the doctor had handed it to me. I didn't even take a look at it. I reached in my purse and handed it to her quickly so I could hold back my son from more destruction.
She unfolded it and read the script. She then looked at me over the top of her glasses and said "I sense sarcasm here."
I looked at her puzzled.
"Well the note says '(My son's name) is STILL autistic and STILL needs services?"
I started laughing. I couldn't help it. His developmental pediatrician wrote the script out exactly how I asked for it!
The interviewer got defensive at that point. "Yes I KNOW there is no cure for autism. But why these doctors have to insult us...."
Score: State 0....Jen 1 Thank you to my son's developmental ped!!!! That felt awesome!
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