My son has had the Katie Beckett Medicaid waiver since he was 2 years old. He has a diagnosis of classic autism, now called "Autistic disorder". He was diagnosed at Children's Hospital of Boston and has been followed by our developmental pediatrician, who is the head of the division for Developmental Disabilities at Maine Medical Center for 6 years, who also has his diagnosis as Autistic Disorder on every evaluation.
Every year we have a nurse from DHHS who sees him to qualify him for another year as autistic and meeting the criteria for disability for Katie Beckett. This year, she had seen him for 5 years in a row, so the rules say we could do a phone update, and she requalified him for another year in September.
got a letter from the "Medical Review Team (MRT)" on Thursday, two days
ago, on December 5. It said A is not eligible for disability based on
"Medical information does not indicate that this child has an
impairment that would preclude the child from participating in age
appropriate activity." There were 3 options, the first two were to ask
for "reconsideration" either with or without new information. To ask
for a reconsideration I had to contact our MaineCare worker or fill out
and return the enclosed form by December 7. They do not work on the
weekends, December 7 is Sunday. That gave me ONE DAY to return the
forms and/or speak with our caseworker. They also give me a deadline
for turning in the new disability forms and new information by December
27. The other option is a "fair hearing" that would need to be
requested by December 27.
On Friday I went to our Independence Association where our case manager and several of her colleagues went through the papers and we discussed what had happened to their other clients and what the best options were. This is the first time that they have seen a child with a clear diagnosis of autism denied by the MRT. This is also not the first time I have been told by professionals in the field that DHHS denies a lot of people because most won't fight the denial. They either don't have the time, energy or resources to fight. I decided to request the reconsideration with new information and started calling DHHS. Of course, it took a couple of hours to get this done. First, the caseworker was on vacation, then the supervisor could not be found. I then requested the "worker of the day" the person who is supposed to be on call, and they said there was no such person. Of course, we knew that was a lie, because I have asked for that person before and gotten someone to talk to, just not the day I had to speak to someone. So I finally found a customer rep who actually gave a rat's patootie about helping someone. She let me explain the situation, then gave me her fax number and after 3 tries the fax went through and she put it on the desk of our caseworker with a note. As DHHS is not known for their reliability in actually reading their mail, our caseworker thought we should call the MRT directly, and someone had their highly secret phone number. They do not want to be found, they do not want to be bothered with phone calls, as I found out. Like I care.
I called the MRT number and was warned that the woman I would talk to sounded like a man, because someone once made the mistake of addressing her as a "Mr." and she made life hard for them. She answered the phone and I explained the situation and that I just wanted to make sure someone was notified that I wanted to have a reconsideration. She said she would email our Medicaid worker to confirm that I had called within the allotted time. I then asked her specifically why was my son denied disability. She said, "Let me read to you from the record. His diagnosis of autism is QUESTIONABLE." Then she said, "Well, he actually was denied in 2006 for the same reasons, but there was a computer glitch and the Portland office eligibility worker forgot to take him off." I was stunned, I was never told he even had a medical review by that team, I had never even heard of them before a couple of months ago. I asked how that could be, he has always had the diagnosis of autism. She said, "It looks like the team said he had "high functioning autism". He's gotten two extra years of Medicaid he shouldn't have had."
There was no since in arguing with her, she wasn't the one who made any decisions, so I said thank you for the information and for documenting I had called.
I called our developmental pediatrician's office. Her nurse took the message. She said this has never happened before, that their diagnosis of autism has always been considered correct. I haven't heard back from them yet.
My son has learned a lot and is doing well, but he is still autistic and needs a full time aide at school and I support him the rest of the time. He isn't able yet to participate in very many same age activities at all without support. I have no doubt he will progress someday to not needing the full time support, but right now, he's only seven. He can't even have a conversation with another peer, he doesn't know how to do it yet. He needs constant redirection. And this is considered "participating in age appropriate activity"? He has absolutely no consciousness about safety. His pragmatics are very delayed. They only look at his being mainstreamed and he speaks.
I worry about what this could mean for the future, as this is paying for his OT and ST in school. Will the school cut this down because they won't be getting Medicaid payment for these? And we would lose case management, which is one of the only things that has helped me at home, to learn how to schedule and teach and do homework. Our case manager also has information about programs that might help A and funding options for recreation and other activities, it is invaluable. It isn't that I want him to be "disabled", it is that he needs and deserves all the help and accomadations and learning options he can get, to level the playing field for him and help him achieve his potential.
What kind of brain dead people are making these decisions? This is supposedly a team of nurses and/or physicians? How much are they being paid to get people off the rolls?
Well, they picked the wrong kid to pick on as a test case. Now they have pissed me off. I have the best disability lawyer in Maine and probably the whole northeast. He has made legal history with his case law win for a young lady with Asperger's. My son's specialists all concur with his diagnosis and will support us.
They just had to do this before Christmas. What a bunch of Grinches!
Addendum: I forgot to mention that we were required to pay premiums for the Katie Beckett beginning earlier this year.