Monthly Archives: March 2013

Comments Off on Autism Policy/Politics in Minnesota; The Good, The Bad and The Ugly

Let’s start with the Good. Remember back in April 2011 – there was a front page article on Minneapolis Star Tribune titled (Double Standard). 

Minnesota has been paying for wealthier autism families autism therapy such as ABA, developmental, etc in Medicaid funds through Fee for Service Medicaid, while it Denied low income autism families/minority families by putting them into Managed Care Medicaid health plans. There was a catch, Minnesota department of human services (DHS) called the therapy “skills training”. I know what the heck is skills training, it is not a method of therapy. It is simply the ability to train someone to do a skill. 

As a result, before the article and since, we (minority/low income parents) have been fighting with laser like focus because to be discriminated in Medicaid when you are low income is just silly. 
By the way, isn’t Medicaid for the poor?
To make a long journey short; DHS Commissioner and her team have realized the discrimination, accepted responsibility and starting January of 2013 negotiated with Managed care health plans that manage Medicaid to pay the SAME type of therapies and services as those wealthier fee for service Medicaid autism families get.
It gets better; DHS leadership have also decided to finally have autism therapies paid and actually call it what it is ABA, Development approaches like FloorTime, etc and ask HSAC members (who are so inclusive – these folks will give you a cavity. That is how sweet they are) to recommend a language that will hopefully be introduced in the state legislature in 2013 session. 
All I can say is YAY DHS! Commissioner Jesson – as the saying goes (you have come a long positive way) Fantastic!
Now The BAD:
Remember autism therapy legislation initially started years ago by Rep Norton (DFL) from Rochester that said (autism therapy should only be paid and covered for children who have state regulated private insurance which is less than 30% of the market. It excluded families that have self insurance coverage and most importantly low income families that have Medicaid/MA coverage. Well, Rep Norton is baaaack again with the same legislation with a different number. And even after all of the above – Rep Norton is still trying to convince us the sun rises out of the west and that Minn DHS does pay for autism therapy for low income families. Now what now?
Now the Ugly:
State legislature of the Senate and House is controlled by the same party along with the governorship. This is the same party that takes minority votes in Minnesota for granted and free without anyone asking what the heck have they done for us. In fact, they can speak for us, about us without us. That is right because god forbid we have opinions or ideas. To make matters worse, if you are not their BFF – then whatever issue you are advocating for gets left in the back burner. 
During elections, so many of these folks come to our communities, learn our language, our culture so on and so forth. Once they win – drop us faster than we can blink – what else is new here. Their logo is helping the wealthier autism families will somehow lift our boat – this tide will lift everyone in the boat. The problem is this tide can not lift poor minorities who are not even in the boat and were left out so long ago on the shores or in the middle of the ocean. 
My advice would be we need to use our votes wisely by negotiating with them rather than just giving it to them just to see it wasted. Think about that and don’t be fooled or misled by empty words or useless words. Action speaks louder than beautiful words. 
Then there is the other party of everyone please pull yourself by your boot straps. Now what now! What if you don’t own any boots or have no idea where the straps are located. What – you will lower my taxes – that is like asking a naked and hungry person if they would like a washing machine or spresso coffee maker. Reality check here please.
So, what is a low income and/or minority Minnesotan to do? 
1. Don’t let our votes be wasted on ungrateful or clueless folks. We need to learn how to fish, negotiate for better policies, services and sharing of resources. We need better leaders that are for the interest of the community as a whole rather than being used as a political fools.
Idil – Somali Autism Mom

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Comments Off on Why Does Autism Health Disparity Exist in Minnesota – in 2 words; Elected Officials.

Today in Commerce Committee in Minnesota Senate, Autism coverage for private insurance only – SF314 was heard. This is the same over the top expensive, not based on any research or science for unlimited hours of ABA for all ages – forever bill.

But, I would like to concentrate this blog on the disparity part between middle/upper income autism family vs the low income/minority autism family.

Sen Eaton is the author and in general has a welcoming demeanor, but a hot shot lobbyist who represents ALL white and non-minority ABA providers spoke mostly and as expected exaggerated everything from saying it will cost 30 cents per kid (what now) to this bill is based on research from NIH and NIMH. (really now what now – not true)

OK, as the only one who is a member in the Federal Autism Advisory Committee chaired by NIMH director that is sooooo false and not fact at all by any stretch. But, none of the committee members really cared all that much to ask good questions or double check his over the top claims. 

Then there were some anecdotal testimonies and of course logic and reason tell us research should drive policy, not anecdotal because you can find someone that says lion therapy works for autism. I would even buy that.

Then, I spoke and as usual the only minority and Black person there and as usual the Chair substitute Sen. Jensen cut me off after speaking two minutes, plus her body language was saying – I don’t care and hurry up. As a result, not my best testimony. I should have ignored her and continued to say what I intended.

OK, regarding health inequality and health disparity – I finally figured out why Minnesota is one of the healthiest states, yet has one of the worst health disparities in the country for minorities. The elected officials that minorities vote for who are mostly DFL preach lots of sugar coded words, give us hugs, have latte with us and even if you read some of their background, it can seem as inclusive as Mother Teresa or Nelson Mandela.

But, when it comes to putting their votes to match their words – that is a whole another story. It really does not match and they know it. I think they hope that either low income or minority voters don’t find out which we usually don’t. In other words, if these elected officials knew that their votes were being watched, I am certain they would be aware and cognitive of it. Thus, health disparity would decrease.

So, what happens now. Well – as minorities in Minnesota, we can keep having these endless naps or wake the heck up and assure the people we voted for regardless of their party are actually voting to support our issues and concerns. We must be diligent and never sleep with both eyes while Minnesota session is going which is from Jan to May.

In addition, we are going to start going on Somali radio and Somali TV and maybe other minority media outlets to talk about politicians, their policies and how they affect us.

We need to learn the connection and never vote blindfolded. Another reason is while most mainstream autism families get educated by public funds through MDH, DHS or MDE through mainstream advocacy agencies that teach them how to talk to an elected official and how to tell their child’s story, most minority autism families have no idea because there are almost no minority agencies funded to do the same-thing in way that is culturally and linguistically appropriate.

And, guess who sets these state agency funding policies – that is right the state leader/commissioner hired by – wait for it….an elected official that WE elected.

Now, you make the connection, or I hope you do.
Thanks for reading this post!
Idil – Somali Autism Mom – determined to fight autism disparity from every corner and every alley.

Category: Uncategorized