-
Katie Beckett Medicaid Medical Review Team says my son's "diagnosis of autism is questionable"
- Dec 6, 2008 at 8:24 PM
- By
- Comments (11) Total Views (711) Everyone can see this journal post.
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.
I
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.
Comments:
That's sickening... Screw them... GET EM KAREN!!!!!!!!!!!
That's crazy and makes absolutely no sense at all! Fight them all the way.
Ridiculous !! Go get um !! Good Luck . Teri
Karen, I'm so sorry you are having to fight this battle. That's ridiculous. Dealing with all the red tape from government agencies is such a nightmare (I worked in state government in a child support agency for 12 years and I readily admit how awful they are). But they don't like to deal with lawyers and I'm hopeful that they'll jump at the chance to fix this when they hear that you have one. Hang in there and let us know what happens...
It is just really stressful, especially right before Christmas. Their deadlines are impossible, no one will be working right around Christmas, which mean I'll have to get it in a week earlier, which gives me 2 or 3 weeks? I am writing a letter requesting their evaluations and decisions for this denial and the one in 2006, and I'm going to include my lawyers name, just to let them know.
This is nuts! I am sure it's incredibly stressful. We are still waiting for Social Security to make their determination if my step daughter is disabled in their eyes. She is disabled, she is mentally about 8-9 years old and is actually 20 years old. There is no way she could live on her own and take care of herself. She will always need to have someone prepare her meals and help her manage her diabetes. She was denied disability benefits initially. These people who make these decisions have no clue what your child's life is like, yet they are making these decisions because they are so called experts in the field. If they were just to spend a day with your son, they would realize that the diagnosis is correct. They control the funding and make these decisions without ever meeting your child and they think they know better. They are nuts!
Trackwidow, these people are actually NOT experts in the field. Most of the nurses or doctors who are on these committees are not in the actual specialty, they are generalists who really have no experience, so their "medical expertise" is actually not true. The medical people on these committees generally can't get a real job in the medical field, and they have big chips on their shoulders. I know because I have talked to them. I wouldn't be surprised if they had some sort of profit for denying benefits, which is well established in the insurance industry.
You are right, they have no clue as to the real day to day experience of our kids, and they really don't care.
I know they aren't experts, far from it, which is why it's so assinine that they get to make these determinations for our kids. It's nuts. We are still waiting on the appeal that we filed in July on my step daughter. She just had and examiner assigned to her case last month. We have yet to hear anything from this person. She hasn't even sent a letter or anything saying that she's working on this case. We are working with a disabitlity specialist in our county who has been helping us with the paperwork, she works with an attorney and has been very helpful.
I wish you luck with your son's case, this is going to be a lot of work, but so worth it.
Oh Karen. I'm so sorry this landed on your lap right around the holidays. Why must we be in contant fighting mode? I'd like to be in thanking mode instead. At each IEP or quarterly review, I have the fear that the same thing will happen to us. You will fight, and you will win. Go get 'em.
Already a member? Click here to log in
Give & Get Advice
-
Looking for healthy snacks that curb cravings, too? We've got some delicious ideas!
-
Is your car turning into a disaster area? Here are five easy ways to keep it clean and organized - really!
-
Here's a surprising trick you can try in the morning to give your whole day a little boost!
are they out of their damn mind? i don't even know what to say karen that is the most asinine thing i have ever heard! i am appalled!
- mitch576
Message Friend Invite