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Medicaid will start paying for autism therapies

26 Jul

Medicaid will start paying for autism therapies. The news was released at the last IACC meeting and I’ve been trying to work out how best to write it since. Seems pretty straightforward, doesn’t it? Not to take anything away from the person who presented it at the meeting but after a while of hearing things like:

Those categories include: section 1905(a)(6) – services of other licensed practitioners; section 1905(a)(13)(c) – preventive services; and section 1905(a)(10)- therapy services.

I just get saturated with the 1915(a) vs 1915(i) type language.

Here’s the announcement: Clarification of Medicaid Coverage of Services to Children with Autism

Here’s one of the first paragraphs:

The federal Medicaid program may reimburse for services to address ASD through a variety of authorities. Services can be reimbursed through section 1905(a) of the Social Security Act (the Act), section 1915(i) state plan Home and Community-Based Services, section 1915(c) Home and Community-Based Services (HCBS) waiver programs and section 1115 research and demonstration programs.

See what I mean? Take from this “the federal Medicaid program may remburse for services to address ASD”

How did this come to pass? A lot of people have been pressuring medicaid for some time to provide autism services. This includes lawsuits, like this one in Florida (Judge: Florida Medicaid Must Cover Therapy for Autism).

If you listen in or watch the IACC meetings, you know that for the past few years one of the sources of pressure on Medicaid has been from IACC member Idil Abdul. I don’t know if a meeting has gone by where Idil hasn’t talked about the inequities of a system where we say we will give medical support to our disabled poor, but we withhold support for treatments related to their disability. Or, to put it simply: why should kids with private insurance get speech, OT and other services while other kids don’t under medicaid?

People often ask what is the value of the IACC and here is one of those unquantifiable benefits. Idil did what a public representative to a federal committee should do: she informed federal members of the needs of the community. Across the table from her was John O’Brien of Medicare and Medicaid Services. John is a good guy and would often patiently correct some factual errors in what Idil had said. But he had to listen to Idil.

And for those of us who know Idil, when I say “she informed federal members” you have to know that “informed” is a major understatement.

Would this shift in Medicaid policy have happened without Idil? It was a big group effort as I’ve already said. Would it have happened later without Idil? We can’t rerun the experiment.

Just to be clear–this wasn’t an effort of the IACC. This was an effort of a member of the IACC. Made possible by her being on the IACC. It’s an odd distinction, but an important one. The structure congress created of the IACC got Idil’s voice in the right place at the right time.

While on the subject of distinctions: as always, my comments are my own and they do not represent the views of the IACC.

By Matt Carey

IACC to hear about Minnesota Somali Project, Optimal Outcomes and National Children’s Study

28 Jan

The U.S. Interagency Autism Coordinating Committee (IACC) meets tomorrow (January 29th). The agenda is listed online and below.

The committee and the public will hear updates on the Minnesota Somali Autism Project–a project to explore whether there is a high prevalence of autism in the Minnesota Somali community and, if so, why. The autism prevalence in Puerto Rico ranks high for the U.S., even though the territory population is largely Hispanic and Hispanics typically have a low reported autism prevalence in the U.S.. An update on the autism prevalence in Puerto Rico will be presented. A recent study on individuals who achieved what the authors refer to as “optimal outcomes” will be discussed. Also, a study of health outcomes in children with autism and their families will be presented.

The IACC will also discuss plans for moving forward. There are many areas I would like to see some focus applied to. But three I have proposed and hope to discuss are (1) the needs specific to children and adults with autism and intellectual disability and/or communication difficulty and (2) difficulties in delivery of medical services to autistics and (3) autism and epilepsy. It is too late for comments to be included in the record for this meeting, but if you have opinions of where autism research and policy should be moving towards, send the IACC comments at

Here is tomorrow’s agenda:

10:00 a.m. Welcome, Roll Call and Approval of Minutes
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:05 Science Update
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

10:20 Round Robin

10:50 Centers for Disease Control and Prevention (CDC) Minnesota Somali Project Update
Amy Hewitt, Ph.D.
Director, Research and Training Center on Community Living
University of Minnesota

Mashalyn Yeargin-Allsopp, M.D.
Chief, Developmental Disabilities Branch, National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Centers for Disease Control and Prevention

11:20 Update on Autism Prevalence in Puerto Rico
Jose Cordero, M.D.
Dean, Graduate School of Public Health
University of Puerto Rico
Member, IACC

11:35 Lunch

1:00 p.m. Oral Public Comments

1:30 Optimal Outcomes in Individuals with a History of Autism
Deborah Fein, Ph.D.
University of Connecticut
Board of Trustees Distinguished Professor Department of Psychology
Department of Pediatrics

2:00 Study of Health Outcomes in Children with Autism and their Families
Anjali Jain, M.D.
The Lewin Group

Craig Newschaffer, Ph.D.
AJ Drexel Autism Institute, Drexel University

2:30 National Children’s Study Update
Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
Member, IACC

2:50 Break

3:05 IACC Business
Thomas Insel, M.D.
Director, National Institute of Mental Health
Chair, IACC

Susan A. Daniels, Ph.D.
Acting Director, Office of Autism Research Coordination
Executive Secretary, IACC

•2012 Strategic Plan Update
•2013 Strategic Plan Update Process
•2012 Summary of Advances
•2011-2012 Portfolio Analysis
•Other Activities

4:15 Public Comments Discussion Period

4:45 Wrap-Up

5:00 Adjournment

By Matt Carey

Note: I serve as a public member to the IACC. However, all comments and opinions, here and elsewhere are my own.
Note: I made small edits after I published this article to include the third area I would like to see get greater focus.

Minneapolis reports three more measles cases

18 Mar

In Minneapolis reports three more measles cases, the Minneapolis Star Tribune discusses, well, three more measles cases in the city. Why bring this up here?

Three more children under the age of five have developed cases of measles in Minneapolis, state health officials reported Thursday, including two Somali children who were not vaccinated because of fears about the vaccine safety.

Four children have been infected. Three were hospitalized. At least two unvaccinated out of fear.

Three more children under the age of five have developed cases of measles in Minneapolis, state health officials reported Thursday, including two Somali children who were not vaccinated because of fears about the vaccine safety.

Officials said that the vaccination rate has dropped in Minnesota’s Somali community, largely because of misconceptions about the vaccine safety. Concerns about a possible link between the vaccine and autism have spread in the Somali community, as well as other communities, in spite of medical reports debunking the connection.

“Contrary to misinformation that may still be circulating, the measles vaccine is safe and effective,” said Dr. Edward Ehlinger, Minnesota Commissioner of Health. “Without it, the risk of disease is real. Children can die from measles.”

The previous case, reported March 5, involved a child under a year old who was too young to be vaccinated. Officials said they did not know whether the fourth child had been vaccinated.

I can already write the responses:
“Better measles than autism” (as though this were a real choice. MMR doesn’t increase the risk of autism)
“If they offered a safe measles vaccine, this wouldn’t have happened” (as though the MMR causes autism, making it “unsafe”)
“look at all the reports in VAERS of death/injury/etc” (as though every report in VAERS is an event caused by vaccines)
“but vaccines don’t work anyway”

I could go on with the responses, but why? They are as obvious as they are lame.

(edit to add–I missed on obvious one that has already been made: “4 cases=outbreak?”. That one just boggles the mind. How many should there be before we take action? If these were demonstrated cases of vaccines causing autism, the answer would be no more. But, hey, it’s just a life-threatening disease in children, one under a year old. I guess that “immature immune system” we hear vaccine skeptics claim is just fine at fighting a full on infection. Just not a vaccine.)

Autistic Somali man denied return to Canada

21 Aug

If true, this is a travesty of justice.

According to a recent story in CBC news, a naturalized Canadian citizen has been stuck in Nairobi for three years. The man, Abdihakim Mohammed, is 25 years old, and autistic.

Here’s the story, in brief: Mr. Mohammed was born in Somalia and emigrated to Canada with his mother in 1990, at about age 6. He is a Canadian citizen. A psychiatrist recommended that he travel back to Somalia with his mother, with the idea that this might improve his communication and social skills.

His mother returned to Canada first, leaving Mr. Mohammed in Somalia. Fearing that he might lose his passport, she kept it in her possession. Officials in Canada took the passport on the grounds that it was in the possession of someone not the owner.

When Mr. Mohammed’s grandmother took him to Nairobi to try to send him back home, he was denied travel. His citizenship card was not enough to convince officials that he is who he claims to be. That was in 2006. He has been unable to leave Nairobi since.

In a classic catch-22, his mother can apply for a passport on his behalf if she can get a court order granting her guardianship. But, in order to do that, Mr. Mohammed must be present in Canada. So, she can bring him home to Canada if she can bring him before a court in Canada first.

Mr. Mohammed has offered to undergo DNA testing to prove his identity.

Note: I wrote a similar post a few days ago, but I managed to overwrite it with a different post. If you have a sense of deja vu, that is why.

Autism Minnesota Somali community see through anti-vaccine brigade

29 May

In November last year, David Kirby wrote a Huffington Post entry about the Minnesota Somali autism situation saying:

In fact, one of the most obvious “environmental” differences between Minnesota and Somalia is mass vaccination…

And of course, the Age of Autism site, made many proclamations about the Somali community and vaccines:

Somali parents, I offer this advice as the father of a son with autism. Like many of you, I watched my normal son descend into autism after receiving his vaccines. I genuinely believe too many vaccines given too soon in our children’s lives is the primary trigger for the autism epidemic

However it seems that maybe the Minnesotan Somali autism population have done their own reading and come to their own conclusions.

The Somali American Autism Foundation is a new-ish Foundation. The domain name was created in Feb 2009 for example. Pretty much in the middle of the period that the Age of Autism crew were waxing lyrical about standing shoulder to shoulder with their Somalian friends in the battle against vaccines.

One of the founders of the SAAF, Idil Abdull, has this to say:

When my son Abdullahi was first diagnosed with autism at age three, I felt angry, sad and confused because I have never heard of the word Autism before. I had no idea what to do next and how to help my son. A mother’s job is to help her child with whatever life throws at them, but when the doctor told me there is no known cause and cure for autism, I felt helpless and hopeless.

I remember crying for what seemed forever. After I realized to be thankful that god blessed me with a beautiful son, I saw the hope in him and the help he needed from his mother. I rolled up my sleeves and went to work by reading every autism book I could find and going online for any help to give my son the hope he and countless others need and deserve. I would not change a thing about my son Abdullahi. He is a happy and loving child and I thank god everyday for him. There is HELP and There is HOPE not just for my son but for all of our children.

Now thats a pretty fantastic, positive and…yep, neurodiverse, type of message don’t you think?

But there’s more.

The SAAF website carries a detailed explanation of what a vaccine is and how they were first started. It takes away a lot of the negative mystery and states:

There is a strong minority of people who believe that the increasing rates of autism and learning disabilities in the U.S. are related to its mandatory immunization program. There is still no credible evidence of a correlation between autism and vaccinations. This position is supported by the World Health Organization, the CDC, The AMA, and the American Academy of Pediatrics.

They then recommend that a parent talk to their physician. What simple, credible and good advice.

I’d like to welcome The SAAF to the growing community of autism organisations that are clearly fed up with a constant preoccupation with a disproven hypothesis. Maybe it would be a good idea for SAAF and the newly created Autism Science Foundation to talk together.

Are the Minnesota Somalis political pawns?

5 May

Let me start out by saying I hope a good answer is found for the high number of Somali children getting special education services in MN under the autism label. The only way to do that properly will take time, money and cooperation from the Somali community.

That said, I will admit that I have avoided this subject up until now. It was very obvious to me that without accurate numbers, this is likely going to just be a game of politics. And, let’s face it, educational numbers are not an accurate way to measure autism. The fact that David Kirby chimed in very early didn’t help either. If I’ve learned anything reading blogs, it is that Mr. Kirby is quite willing to misuse data.

As background, there are more young Somali kids in the Minneapolis schools getting services in autism preschools. Groups such as Generation Rescue have been using this to support the idea that vaccines cause autism. Others have been claiming that vitamin D deficiency is to blame.

It is worth noting that the fraction of Somalis in the autism preschools is about 1%. While this is high compared to the non-Somali’s in preschool, it is about the same fraction for older children in the Minneapolis schools.

As I said, I was planning on leaving this subject alone. That is until I read the Simons Foundation blog on the topic, reporting on this report. The SFARI blog (as it is known) uses precise language to describe the situation (something that would be good for us all to learn).

Public health clusters are usually suspect, but in a report released last week, the Minnesota Health Department and the Centers for Disease Control and Prevention confirmed that, among 3- and 4-year-old children, those of Somali origin are two to seven times more likely to be placed in preschool programs for autism.

That’s right. They didn’t find that more Somali kids have autism, they found that they were placed in autism programs. You don’t need a medical diagnosis to be placed in an autism school program.

But that wasn’t what got me to write this post. What prompted me to blog was the next sentence:

The report also found other ethnic trends in these classes: just two Asians and one Native American between 2005 and 2007.

Wow. There were even years with zero Asians in those classes. If one is to take the data from the Minneapolis schools as indicating that Somalis have more autism, one has to then explain why Asians and Native Americans have almost no autism!

Why does this bug me? Because it exposed the exact sort of hypocrisy that typifies the efforts of Generation Rescue, Dan Olmsted, Mark Blaxill, and David Kirby (to name a few): “Look until you find something that supports your preconceived notion, then stop!!!!” They have to stop before they find something that would be difficult to explain–like the low prevalence amongst Asians and Native Americans.

Generation Rescue’s motto is “Autism is preventable and reversible”. If so, why aren’t they looking into the low administrative prevalence amongst Asians and Native Americans in Minneapolis.

Jenny McCarthy has often complained that no one wants to study her son to see why he was cured of autism (which begs the question: why hasn’t the alternative medical community studied him?). Why isn’t Jenny McCarthy and her partner Jim Carrey in Minneapolis calling for a study of the Asians and Native Americans in Minneapolis?

I could keep going on and on, but you get the point. Generation Rescue cherry picks the data that supports their notion of vaccines causing autism. They ignore the inconvenient information. One group, the Somalis, are used as political pawns because they help GR with the idea that vaccines cause autism. As to the idea that autism is “preventable and reversible”? I guess if GR really cared they would be looking at the Asians and Native Americans in Minneapolis.