Monthly Archives: April 2015

Comments Off on Some MN ABA Providers – Cry Me a River and Boohoo

Alright – so, how this new autism benefit in Minnesota and at the Federal level came about is really no secret because we kept blogging and asking media coverage throughout the years.

Sadly though not surprisingly, some attention hungry MN ABA providers or as I like to call them “blood sucking, greedy and racist” not all of them are crying a river because ooohhh, they did not get credit.

First, let’s get one thing clear – I have never ever ever ever seen any of these blood suckers fight, advocate, testify or ask anyone why Managed care low income autism families were being denied ABA, Really never. The only time they got involved with this benefit is when their private market coverage failed and ours passed in 2013 and during HSAC process. and that was only because they wanted to tell DHS how good of a job they are doing with their families in quality of care, supervision of staff, family driven services, child centered therapy blah blah. Oh, how can I put this diplomatically, for them to say that is like George Wallace saying I care about civil rights or being inclusive. Don’t get me wrong, at least Wallace said it loud and proud “segregation now and segregation tomorrow”. They do it here with a flavor of Minnesota nice delivered with a hint of sugar. They mostly do it subliminally in their intake process, their discharge process, their supervision process and their overall way in how they teach and deal with low income and minority autism kids/families.

Now, all of the sudden they want to take credit for low income managed care kids being able to get ABA. Are you bleeping kidding me.

This would be all too funny, if it wasn’t sadly true. In fact, even now they still never talk about or mention how many managed care kids they serve or care to serve. To them it is about the bottom dollar (not all of them). I remember back in 2013 session in one of the House committee where I must have done good in testifying against their 25 million dollar private market autism bill while they wanted to reduce the 12 million dollar bill for the low income autism kids where they recommended MA kids have an age cap of seven, while wealthier private income kids had no age cap, one of them came up to me after words and said “what difference did it make if ABA was called ABA or skills training”. I told him – it made a difference because the system can not discriminate against low income kids who are disproportionately minorities and are getting screwed by the current policy.

Now, they want to claim credit – again are you bleeping kidding. My response is “boohoo and cry me a river”. Better yet, buy Justin Timberlake’s cry me a river CD and maybe some blues jazz and really cry.

According to public data – none of these blood suckers have managed care (Ucare, Medica, etc) kids and do any intensive ABA therapy because they still don’t give a flying hoot about how our kids services are funded. Also, according to public data the following is what they were reimbursed for by the state Medicaid agency and their racial data for the children they serve. My take is most are just greedy bastards, some are simply racist. Luckily, there are few good ones.

This is 2013 and 2014 data (note 2014 reimbursement not complete yet)

Behavioral Dimensions – $6,879,362 – total kids 249, minority 33

Helena – $1,662.507, total kids 151, Minority 67 (Thanks Helena!)

PIE $1,373,11 – total kids 45, minority 10

Autism Matters $224,569, total kids 15, minority 2 (come on Tara!)

Minnesota Autism Center $34,728,536, total kids 405, minority 96 – (the most minority kids, but sadly most are forced to do 40 hours or hit the road. MAC also discharges children whose parents ask for quality of care or less hours who are mostly minorities, my son being one of those dozens of kids. MAC’s philosophy is 40 hours of center based or hit the road which is a contradiction to CTSS statute of child centered, family driven and culturally responsive. In fact, even if the child has objective 2nd medical recommendation of less than 40 hours, MAC still refuses to listen and discharges the child and family from treatment – usually abruptly)

Behavior Therapy Solutions of MN $2,378,348, total kids 148, minority kids 41 (not bad!)

Holland Center $1,968,126, total kids 43, minority kids 16 for both years, (not bad)

Home and Community Options $321,350, total kids 29, minority kids 2 (not good)

Lazarus $1,532,557, total kids 28, minority kids 11 total for 13 and 14 years (not bad)

RCA in Rochester $4,740,430, total kids 77, minority kids 18 for both years (not bad)

MEAP $1,342,325, total kids 30, minority kids 3 Asians and ZERO Black (I would say they have a problem with diversity and borderline racism – my opinion)

Lovaas $4,607,339, total kids 44, minority kids 8 total for both years (it seems to me there is a problem with diversity staff and kids here – my humble little opinion)

St. Davids $2,068,152, total kids 236, minority kids 85 for both years (they seem to care about diversity the most and even opened a center for Somali autism given the crises in our community – Thanks much!)

As you can see the biggest ABA provider is MAC and has been refunded over $34 million dollars in just two years. Since this is a publicly funded treatment – DHS must have a better oversight for intake, discharge, quality of care, patient rights, child progress, family input and everything else to assure safety, quality and what is best of the child/family is always done.

My questions and gentle friendly suggestions to DHS which is the agency that is suppose to assure our kids learn and progress as well as assure treatment is always child centered which means it should be based on research and science, and the family/parents have rights in what and how their child’s treatment is going would be;

1. Please make sure there is some oversight and accountability in quality of the treatment and intensity of hours is appropriate for the child and family. It can not be the provider’s way or the highway.

2. The treatments are culturally appropriate meaning our holidays are respected and we are not told to bring our kids on our religious or cultural holidays.

3. Families/parents have a system in place to make their concerns/complaints should they arise and a system to assure continuence of care during that time for the child.

4. Are our center kids safe, if they get hurt – does it get reported to DHS, are parents made aware of and given explanation, can they complain if their child gets hurt under the care of these ABA providers and what is that process for the family/parent?

5. If a child is 15 and has done 10 years of ABA in center and still not even toilet trained, nonverbal, etc – can you prevent that. I see this a lot whereby providers just keep the child in center based services to age 10 or even 18 for 40 hours a week then kick the child out after they age out, yet the child still has significant needs. What the hell has this ABA provider been doing for this child and family for the past years? This is both cruel and heartbreaking. DHS must assure kids have a baseline of their skills and an objective eval to see progress. If not, please don’t keep funding it. Ask for accountability of the treatment.

6. If a parent/family has concerns in the care and treatment plan of their child, is there a system set where they can freely and without being retaliated against speak up and give their input. Often ABA providers label those of us that ask what our kids are learning (difficult, hostile, hard to please, yada yada). In other words, if we keep our mouth shut, ABA companies keep our kids then drop them after they age out and they can no longer handle or DHS will no longer pay. There is no measure of the quality of treatment, assuring progress is being made, parents are the table of their children’s treatment plan.

This is when most ABA owners come and usually ask DHS for less rules and regulations so they can continue business as usual. This is no longer acceptable. DHS must treat these ABA providers just like it treats their other publicly funded providers, i.e child care centers, state hospitals, etc. Maybe even more oversight, because our kids with ASD can’t always tell us what happened or did not happen in these centers that are usually small cubicles.

Finally, my free advice to these ABA owners that seem to be self righteous, arrogant yet ignorant to take a flying leap and stop claiming credit for staring this new ASD benefit to assure managed care and fee for service kids get equal access to ABA therapy. You had nothing to do with when I started this and you still have no desire to take managed care kids or how their treatment will be paid. Maybe one day I will write a book about my experience in this new policy and with many of these blood sucking ABA providers in Minnesota. Autism by itself is hard and challenging – add racism, greed, bullying, arrogance, self righteousness and ignorance makes it unbearable and painful to the soul.

Above words do not reflect any committee, agency or candidate

Idil – Somali Autism Mom & Minority Advocate


Comments Off on Minnesota is Approved by the Feds for Autism Therapy Coverage – Awesome!

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


Category: Autism Policy