Alright – so, our state is finally able to cover autism therapy such as behavior and developmental therapies for children on Medicaid including those on managed care such as Ucare, Health Partners, etc. We can also now call these therapies their real name and not some under the table code of skills training. Let’s put this into context and how it all started.
Many states have been approved for only ABA therapy coverage, almost 40 now with the help of Autism Speaks’ lobbyist and advocates along with wealthier autism families. Back in 2010 – Minnesota wanted to be part of those states that mandate private insurance companies to pay and cover ABA. I along with other Somali autism parents found out about it and went to the Capitol and testified against that inequity. We simply asked if state legislators are going to mandate private companies they don’t even own to cover for autism therapy then they had to mandate and pay for ABA for the low income Medicaid kids they are actually responsible for.
There was a lot of hoopla and hapla and we basically pissed of lots of these wealthy autism families and Autism Speaks. That original bill of covering ABA for only private insurance kids was authored by Rep Norton of Rochester and passed the House committees and the House floor. It was being lobbied for by an attorney autism mom who is now a Minnesota judge Amy Dawson. We fought Amy hard with a laser like focus in the Senate and Governor Pawlenty’s administration by simply asking people like Governor’s policy adviser Brian L and Sen Berglin – either do it for all or do it for none and most of all don’t leave out the autism families who can’t afford the therapy and who you are responsible for.
To make a long story short, we won and prevailed in the final HHS conference committee chaired back then by Sen Berglin. Hodan, Istahil and I took turns on who went there, we distributed our points to every conference committee member and made sure one of us was always there when they met. As a result, we defeated that legislation and it was taken out of the HHS omnibus in conference committee. Then in next sessions of 2011 and 2012, I must’ve made dozens of trips to the Capitol asking the same question as Chris from the Tribune wrote it on April 2nd, 2015. Abeler and Gottwalt would call DHS legislative folks and ask to either deny or confirm what I was asking. DHS usually denied because it turns out in order to pay and cover ABA – a state Medicaid agency had to have the Feds approval usually CMS which our state did not. But sadly or maybe cleverly wealthier autism families did get ABA providers to do ABA, but they billed the state Medicaid agency as “skills training”. It can sound confusing, but it is really simple – they found a loop hole and used it while the families Medicaid was for – the poor and low income were automatically put into Ucare, Medica, etc – and denied the same equal therapies. Sound discrimination and unfair – it was. And, I for one was determined to fight it from every mountain, river and valley.
Meanwhile, our friends in the Media especially the Minneapolis Star Tribune’s Maura and her editor wanted to write this double standard of autism coverage between the haves and the have-nots. I think it took me maybe over six months to convince them because to understand ABA, TEFRA, Managed Care, fee for service, Skills Training was not an easy task. Hence, the front page Tribune story of “double Standard” in 2011.
Then in 2012 session, after maybe asking (ok harassing) Rep Abeler and Sen Hann who was at this time the chair of HHS on the Senate side asked DHS to review and come up with how they will cover autism therapy. In fact, Abeler said either do it for all or do it for none. How is that for equality, Abeler simply rocks!
DHS then asked their HSAC committee to review it and came up with the current autism state plan. Well – initially they recommended ABA coverage for more hours for younger kids and less hours for older kids which actually makes sense and is research based. But by this time, the blood sucking, greedy and racist MN ABA providers came to the table and through their lobbying convinced HSAC to change its mind in age cap for intensity of hours. I did not fight this change heavily because I made sure there was a language of objective second medical opinion would be counted if the family wanted and/or if DHS asked. I think that makes it free of conflict of interest and assures child centered, family driven and culturally responsive therapy which we also asked and was included in the final language.
Meanwhile, Commissioner Jesson of DHS and Governor Dayton put about $12 million into their 2013 state budget to cover this new autism benefit which I am very grateful, especially Dayton’s health policy Lauren who has assured the language and funding were right (Side story, Lauren came from Franken’s office in DC where I was also asking support at the Federal level then became DHS asst commissioner for health care where I also sort of harassed her, then at the right time became Dayton’s health policy person when I needed her the most in 2013 session which was like destiny or something). I was speaking to Lauren as late as midnight on the night this Medicaid autism benefit passed in May of 2013. Yes, they work that late especially the last few weeks of the legislative session. In fact, this Medicaid autism bill passed at 1AM on a rainy night. I remember vividly because I sat in my car after words at 1:15AM or so and watched the rain, then cried then smiled.
In parallel in 2012, I was appointed to the Federal autism committee (IACC) by United Stated Secretary of HHS solely because of my passion for fighting for underserved autism families. This gave me a chance to advocate at the Federal level to cover autism therapy. Initially, CMS’ previous administrator said “ABA can not be under EPSDT because what is paid under EPSDT was written by Congress”. And, I did not want to advocate Congress for this. So, CMS advised me and DHS that we could apply either 1915i or 1915c (the ladder has a limit in amount which would’ve capped the age and number of kids getting ABA). I actually supported this initially then Regina W who was back then my contact person at DHS recommended 1915i and Keri from CMS also recommended this. Hence, why DHS first applied the 1915i autism waiver from the Feds. Then I figured, when CMS got a new administrator Wonderful Marilyn T – I could ask and see if her administration could do something in the EPSDT plans.
By this time, two states sued Medicaid whereby a judge ruled if ABA was being covered for wealthier private insurance kids then ABA had to be covered for poor/low income autism kids as well by Medicaid. This gave me even bigger chance to keep asking CMS the same questions I was asking DHS couple of years earlier which was why can’t CMS cover autism therapy. I kept saying if CDC which is under the umbrella of U.S HHS can say to families learn the signs and act early then NIH/NIMH says act early and get early intervention, how can CMS say no, we don’t pay what CDC and NIH recommended. Aren’t they all under U.S HHS. Well – yes they were and they somehow needed to listen to each-other. Hence, why CMS in July of 2014 came out with a press release and said they will now cover and pay for not just ABA but they said both behavior and developmental autism therapies. To say this was like Mozart music to my ears is an understatement. I was simply filled with joy. this can be seen here at the IACC meeting in July 2014 around the 6.49.01 mark.
This change from the Feds prompted DHS to change its application to CMS from 1915i autism waiver to a state plan under their EPSDT Medicaid plan. This push was not my doing, it was actually Anne Henry from MDLC (Minnesota Disability Law Center). Basically, I did not care if it was 1915c,1915i or EPSDT, my only main goal for years has been equity. In other words, MN must cover all autism therapies for the low income autism families in managed care health plans. And, once DHS and CMS assured me of that – what route or vehicle they used to get there was not a priority for me.
Finally, on March 27th, 2015 – the Federal government (CMS) approved Minnesota’s application to cover autism therapy of both behavior and developmental therapy for kids from birth to 18 in a way that is child centered, family driven and culturally responsive whereby parents/families have rights and a say in what and how their kids are treated.
Therefore, my five year advocacy with DHS and CMS is done. Keep in mind, there is a lot still to be done, in terms of the logistics of implementing this, assuring what is written and passed is followed, creating a safe place for families to make their concerns, quality of care, quality of supervision, assuring these autism centers are safe and creating a holistic oversight and accountability to assure our kids learn to their best outcome and their God given full potential. This will take a while to get it right, but because we now have an autism lead director and even an autism team at DHS – I am confident it will be done right and with compassion especially under Commissioner Jesson and our new fabulous assistant commissioner in charge of autism Jennifer D.
While, I might have been the most vocal and persistent voice in this benefit, there were dozens in our community that have helped and supported us along the way.
Therefore, on behalf of the thousands of Minn autism families on Medicaid especially on managed care health plans, I thank the following amazing folks for their support and kind hearts.
In State – Commissioner Jesson, Prev asst commissioner Dr. Sulik, Pawlenty policy adviser Brian L, Dayton policy adviser Lauren G, Regina W, Deputy DHS commissioner Anne B, Asst Commissioner Loren C, Dwight H, Alex B, Heidi H, Laura S, Amy D, Bud R, Pamela H, Anne Henry, (too many Anne’s here) Abeler, Hann, Gottwalt, Berglin, Pogemiller, Lourey, Jeff S, Ellie G, Kathryn K, Jay, Lin and Robert F from the health plans – I am sure I am forgetting some, but everyone in state agencies or state legislators and advocates that supported equity and fairness.
In Federal government, Kareem D who was Obama’s disability policy adviser, Marilyn T, Verlon J, Courtenay S, Mari, Kari T, Charles, John O, Cindy M, Melissa H, Nancy K, Ellen, Sebelius, Aryana K and everyone at CMS especially the staff at the administrator/director’s offices who no matter how stupid my questions were made sure someone answered them. Sadly, most of the Feds folks left and I did not get a chance to thank them, but my gratitude is endless.
Somali Community leaders – Dr. Fahia, Mohamed Jibrel, Hussein Samatar, Flight 13, Abgaalow, Said G, Farhia J, and so many more that I am probably blanking out on. The good thing is I was blogging as we succeeded each step and thanking those from our community who supported us in each small success over the years.
Our friends in the Media who put our frustrations into cohesive words and questions; Maura L and her editor Dave H, TC Daily Planet’s Andrea, Pioneer Press’ Chris S and Michelle from Minnesota Spokesman-Recorder.
Finally, the best for last were Somali autism parents. When we started this back in 2010 at the state Capitol and 2009 in Pawlenty’s admin – there were at least twenty Somali autism parents. Many simply got tired because autism by itself is challenging and overwhelming then add advocacy can be painfully long and tiring. There were Hodan, Istahil, A/hakim, Cascase, Nuur, Jama, Sahra, Kaltun, Farah, A/qadir D, A/qadir K, Mohamed A, Mohamed K, Mohamed L, (there are many Mohameds) A/fatah, A/azis, Yusuf, Halima, I might have been the vocal autism parent, but it was a joint venture and a united front to fight and advocate for our kids. I thank you from the bottom of my heart for fighting for our kids who are just as American as Apple Pie and as Minnesotan as its lakes.
We did it!!!
Above words do not reflect any agency, candidate or committee
Idil – Somali Autism Mom & Minority Advocate