MN State Medicaid Agency (DHS) Releases 1915i Autism Benefit for Public Comment

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