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Alright, so this is probably one of my proudest accomplishments. And, while I don’t want to brag or anything but if I were a Caucasian autism mom – this benefit would have been named after me.

Anyway, at this point – I am just glad it is real and is happening.  To give some background history – Autism benefit is simply autism therapy for children up to 18 years of age that have a diagnoses of ASD (autism spectrum disorder). Minnesota’s autism Early Intensive Development and Behavioral Intervention (EIDBI) will be available to all eligible children receiving Medical Assistance coverage through fee-for-service and managed care. (fee for service – FFS is Medicaid/MA whereby the parent pays a fee based on their income. MCO is Managed care such as Ucare, Medica, Health Partners, etc and is usually offered to low income families)

Have you ever heard of Elizabeth Taylor; well I called myself the Elizabeth Taylor of ABA therapy. I have been divorced, bullied and belittled by so many of them. The one that really woke me up was in 2009 when an ABA provider told me when my son was 5 years old, he was too old for autism therapy. Then said he can’t be cured from autism. I remember I went into my car afterwards and cried like I have never cried in my entire life. Imagine hearing those words of there is no hope for your child. No parent should be told such cruel, in-humane and wrong words.  

I remember after I had no more tears saying to myself – I don’t know how I am going to do this, but I will drink lots of Somali tea to get energized and I will make sure no other child’s dreams are crushed and no other mother is devastated this way. Every child deserves equal opportunity to learn and progress. Every child has potential to reach their best outcome and their God given full potential.  

Well – that day is finally here. I have advocated high and low, wide and narrow for this new DHS autism therapy coverage which has so many good measures – I feel like finally relaxing. There is no other autism therapy coverage like it in the country thus far. Here are some simple benefits of this:

1. No more – Will an ABA provider ever tell an autism parent – it is their way or the highway.
2. No more – will an ABA provider tell an autism parent – they can’t cure their child’s autism. Instead each and every child will be treated to reach their full potential. And, there is no cure for autism anyway.
3. No more – will an ABA provider discharge a Somali autism parent because they could not understand the training and had no interpreter. The child and family’s primary spoken language, culture and values must be considered throughout the diagnosis, CMDE, individual service plan (ISP) and individual treatment plan (ITP) development, progress monitoring, parent education and support services and coordination of care. A language interpreter must be provided when needed.  
4. No more – will an ABA provider do one size fits all therapy. It will now be individually tailored and culturally appropriate. This means if you don’t want your child to learn xyz skill based in your culture, the provider can’t retaliate against you.
5. No more – will an ABA provider do their own assessment and diagnoses. Eligibility for the State plan HCBS benefit must be determined through an independent evaluation of each individual. Independent evaluations/re-evaluations will be used to determine whether applicants are eligible for the State plan HCBS benefit. 
6. No more – will an ABA provider tell an autism parent to take their child out of school, speech or other therapies or they will discharge you. Now collaboration is a must.
7. No more – will an ABA provider confuse you. Now we can ask for a care coordinator to help parents with the complex autism services and therapies their child will need.
8. No more – will an ABA provider say only ABA works. Now you can get much needed other therapies such as speech, occupational therapy, developmental therapies, etc.
9. DHS will monitor and implement changes as needed through both a system improvement process and coverage with evidence development process established through learning collaborative described in the quality improvement plan. This means we will change and grow as more autism intervention research is done and improved.
10. No more – will an ABA provider bully an autism parent – now there is a process for parents to make their concerns addressed.

In sum, I am ecstatic about this benefit. The 30 day public comment ends on July 2^nd, 2014 if you want to submit your comments to DHS. Then DHS evaluates comments rec’d and they submit the application to Federal government agency – CMS (Center for Medicaid and Medicare) which has around 90 days to respond. Personally, I have a good gut feeling that CMS will approve MN autism benefit application fairly quickly. I must say initially I was worried that managed care insurance companies that cover low income ASD families might pay less or have more strict rules which will for sure make autism providers not take MCO kids. But, DHS has assured me FFS and MCO fees, rates and rules will be the same and will be monitored for any unequal access. Therefore, I have zero concern about this autism therapy coverage.

I also really want to thank on the record DHS Commissioner Jesson, Deputy Commissioner Anne B, Asst Commissioner Colman, Director of Disability dept Alex B and Anne Harrington who has been the wind beneath my wings for so many years. Thank you all very very much! Plus DHS’s legislative folks @ Continuing Care dept whom God knows I have asked (ok, harassed) so many questions more times than I can count. Finally, I like to thank Regina prev deputy asst mental health commissioner who worked very hard in MN considering 1915i which has no cap vs 1915c which has a cap and is what WI has. I initially thought we should get 1915c and do what WI is doing for their autism families, but Regina convinced everyone otherwise and I am glad because I would hate for any child to be on a wait list for early intervention therapy. 

Here is the full language of the new autism therapy benefit by MN DHS. (it is around 50 pages long and has lots of autism policy language, but if you are an ASD parent – it will feel like reading an interesting novel)

Above words do not reflect any candidate, agency or committee.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

At 1am on Thursday, May 16th, 2013 – Autism history was made in Minnesota when Health and Human Services Conference Committee unanimously voted for coverage of Autism ABA and other development therapies for the poor and MA/Medicaid autism family that is disproportionately a minority. I am feeling tired, but ecstatically happy and overjoyed. This will assure children will get autism therapy up to age 18 regardless of if they have fee for service (TEFRA) or Managed Care Medicaid. This law will also eliminate the current double standard coverage for the have-nots. Equal access, equal coverage, and equal rights prevailed, what a feeling!

We have been fighting this since the 2010 session consistently, persistently with a laser-like focus with simple advocacy and leg work.

Background History:

State legislatures started this session with lots of ambitions for autism. The wealthier middle and upper-income families were more coordinated, hired K street-type lobbyists and even a Hollywood-type publicist to get state funds from the Health and Human Services budget to pay for ABA Autism therapy. Many of the ideas were driven by few well-off for-profit providers that wanted to keep their bottom line up.

It got interesting and heated when HHS Finance had to cut at first $150 Million from its budget then due to the new taxes that went down to $50 Million – how and what other poor, disabled, or elderly community will lose to benefit the middle and upper-income communities. That was the $25 Million question?

We in the Minority Autismville families realized early to play the game in which we would hold politicians to their policies and how it will affect the under-served and overwhelmed poor and minority autism communities. Don’t hate the player – hate the game.

As you all know, all three MN branches of government this year are held by one party which meant whatever came out of the state Capitol – they would have to own it, explain it, and defend it to ALL Minnesotans, especially their core voters. As a result, Governor Dayton understood this game early and allocated $12 Million for autism intervention therapy. It is worth noting that previous legislators from different party charged DHS to recommend a better and more cohesive method of how our state should pay and fund early intervention autism therapies. Thus, HSAC’s recommendations were pretty good despite the fact that I was the only person of color to ever participate and HSAC has zero minority members – that is right zero look like us and they decide not just autism policies, but so many health policies for DHS and the state.

The House: What did they do?

Well – they went wild is putting it mildly. Minn House of Reps kept having bills and amendments that were all over the place in coverage, fairness, equality, and cost. It was very difficult to even get a reasonable fiscal note. Initially, equal access for the poor MA autism family who is disproportionately a minority was out of the window and was never even considered. There was no autism agency of color that participated, had input, or was listened to. In fact, those that are not for profit were even for the wealthier autism family. Clearly, as a Black autism mom and advocate, this was frustrating and disturbing at the very least. I would say Rep. Clark and Rep. Abeler were the only voices of reason here. Most did not ask questions of equal coverage, research, or fairness. Few asked about the cost in the finance committee, but then voted for the expensive state-funded private insurance coverage. I was mostly confused here. Many would ask here “why were we so frustrated”. Really, asking us that is like asking an Eskimo why they are cold.

The Senate – What did they do?

Well, in general, the Senate is more approachable and sincere. I would say with the exception of the Commerce Committee, all of the other committees chaired by Sen Lourey and Sen Sheran asked questions, amended the original private coverage bill, asked for fairness and equality coverage. And, in the end, they took off both public and private coverage. They said they did not have money for either one. Well, at least this body is fair. My other favorite thing was they actually asked testifiers in the order they requested, they let everyone finish their thought and testimony, and they asked for expert information from DHS. Even Sen Hayden pretended to care here about his poor and MA minority autism families.

The Governor’s office – What did they do?

Well, I am not sure how to articulate this – all I can say is that there must be a higher power, that is looking out for the under-served autism family and in fact all autism families. They say what makes a politician great or bad is their staff and Gov Dayton just happens to get one of my favorite health policy folks in the country. As a result, his office worked tirelessly to figure out a way for all autism families to get appropriate autism therapy and intervention. First, they supported DHS’s language and the Governor’s proposal.

Then they worked with the wealthier group and came up with a very creative method of assuring autism coverage that would not have any fiscal note for the HHS budget. I was very pleased with their approach which to me seemed inclusive and fair-minded.

Who can ask better – really.

Summary:

I would say the poor, MA/Medicaid most likely minority autism family that could not afford a lobbyist, a publicist or a red T-shirt-wearing gang won and prevailed with simple good old American activism. These families will now have starting early next year access to ABA and other developmental autism therapies for up to age 18 with no cap in enrollment or allowed amount. This is amazing for our families and our communities of color in Minnesota. This kind of coverage does not exist for the low-income autism family anywhere in the country. So, huge win and a difficult journey but a fantastic end. Awesome!

Politically since these folks are politicians – I would say Gov Dayton came on top because he said what he meant and meant what he said. Rep. Abeler kept his promise from last year and continued this year. And, Rep. Clark was our punching bag for the wild house and was always kind and welcoming. The most pleasant surprise came from Rep. Liebling who offered the final amendment in literally the final hour around midnight, (really tired now) before the final vote to assure the criteria and language for both public and private mandates were similar to eliminate differences & disparity so that we don’t have to decrease it later. In other words, preventing disparity & discrimination from the beginning is always a better policy than decreasing it later.

I have to say I was shocked by this in a good way.

The bottom line is we need to learn to vote for those that deliver better policies for their voters in action and not just preaching election words. Quite frankly, I would rather have a politician who talks like a sailor and has a heart like Mother Teresa and a mind like Nelson Mandela. In addition, the words, decrease disparity, minority, and even Somali were said more this session than I heard in previous sessions, but if they are just words and not good preventive policies then (hadal badani haan ma buuxsho is my take). Words are meaningless unless they are backed by meaningful actions and policies.

Regrets – None from our corner. However, I think if the middle/upper wealthier group worked with the poor and minority side, we could have achieved more in a united front. Collaboration and cooperation are always better than bullying, dismissing, and intimidation. I hope they think about that next time. Our kids are just as American and MA/Medicaid autism families are financially vulnerable which means helping your in need fellow American brother/sister will go a long way in the end. To the red t-shirt wearing gang who underestimated our efforts – don’t hate the player; hate the game. We won by using simple leg work advocacy that was focused and persistent until the end.

God Bless!

The above words do not represent any candidate, agency, or committee.

Idil – Somali Autism Mom (determined to fight for equal access to autism services from every mountain, river, and valley – together we can do it).