CMS Releases State of the States Status on Autism Services

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The long awaited Autism Spectrum Disorder report on how and what states are covering was released by CMS (Center for Medicare and Medicaid Services) last week.

I for one have waited this report for a really long time and God knows asked for it forever. 

I wanted to see what and how CMS covers autism therapies, especially early intensive behavior therapy (ABA). What ages it covers for and how intensive in comparison to private insurance coverage. We know that about ½ of the people with Autism have Medicaid and it is important for CMS to have similar or close coverage for the thousands of low income autism families that depend on it.

In other words, if a state has private insurance coverage mandated by state legislature for children and/or adults with ASD, and it does not have similar coverage for children with Medicaid, then that is a recipe for disparity and bias policy.

This report lists which states have Autism Specific Medicaid Waivers, which states have ASD coverage under their 1915c waivers and which states have private insurance autism coverage. I think it really gives a detailed information on how states are doing in covering not just early intensive behavior therapy, but in the education system such as, preschool, school age, adolescents and adults. As you will see and as children get older, the services and resources are far, few and scarce. In fact, only few states have Medicaid Autism adult waivers which is very sad because these children will and do get older then what. What happens then?

As an Autism mom along with probably thousands in Minnesota and across the country, that is my biggest worry and fear. What will happen when my child gets older. What types of services will be available for him, what resources will be there, how will he be treated and how will society embrace adults with autism that are coming in high numbers. So many questions – so few answers for autism parents in Minnesota and nationwide.

Personally, I don’t think Minnesota and nationally – we have done a good job in addressing adults with autism issues. There are so many critical issues, such as – employment, housing, independent living, etc. And, with the exception of handful of states such as PA – the rest of the country is sleeping and missing in action including Minnesota. We have no ASD specific adult waiver, or even any real support once a child reaches 18 in Minnesota.

I hope people read this extensive CMS ASD report, it lists every state and their services. You can also just read about the state you live to see what services are provided there. For Minnesota – it has the information before our state legislature passed the Medical Assistance Autism early intervention therapy last year in 2013 legislative session. It also states that MN does not cover or pay for ABA (applied behavior analysis) therapy, but it does or did for the wealthy autism families on fee for service Medicaid while it denied (not anymore thanks to our advocacy and Amy Dawson’s lawsuit) low income managed care autism families. I think that was a step in the right direction of equality. Nevertheless, I think MN has a very long way to go since most children of all races are still not getting diagnosed until age 5 which is three years late. 

This of course is not just a DHS problem, but MDH (Minnesota Department of Health) problem, since MDH is charged with Assessment, Assurance & Policy part of public health, and assuring the public is aware of the medical conditions they have and what services are available. I think MDH has failed in this area under Governor Dayton and MDH Commissioner Ehlinger. There is one silver lining of hope here, if Governor Dayton whose other minority policies have also failed loses the election in 2014, we get not just a new Governor, but a new MDH Commissioner. Let’s remember to vote out Dayton in November.

I also think MDE (Minnesota Department of Education) Part C which is for early education for children with special health care needs such as autism has failed miserably. MDE Part C which is Federally funded is suppose to outreach and educate parents about their kids special education needs before the age of five. I would give them F- since most kids with ASD are not even getting diagnosed until age five. They are late, dis-organized, out of touch and too passive in outreach, education, enrollment and everything in between.

I am sure, I am pissing off Commissioner Cassellius whom I like and respect along with Assistant Commissioner Elia B, but if the buck stops with them, then they need to either fire or shake up Part C folks at MDE because they are doing a horrible job.

Finally, I really thank everyone at CMS tha
t worked on this report from the top – Administrator Marilyn T to everyone under her, especially director of children’s department – Cindy M. I really appreciate all of the work they have put in this report, especially John O who is a fellow IACC member. I am confident this report will help states and their leaders take a look and re-evaluate how they are doing in autism services and education because ignoring will not make the problem go away.

Here is the full report, make sure you have coffee and water because it is over 400 pages, but well worth the read.


As usual, above words are my opinion and do not reflect any committee or agency.

Idil – Somali Autism Mom & Minority Advocate

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