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Alright – so, unless you live under a rock, don’t have a child with autism, don’t work in the field of autism, etc. then you heard of Lovaas autism clinic. Let’s give a brief history. Dr. Ivar Lovaas, a researcher from UCLA did an autism study on 19 kids in 1987. He found that 47% entered mainstream kinder garden without any special education assistance. This study was repeated four years later and most of those 47% kept their gains. Lovaas used discrete trial teaching (DTT) which has been widely researched and is found to be one of the most effective methods of applied behavior analysis (ABA). As a result of this significant study, Lovaas is often called “the father of ABA”.

There is Lovaas West Coast where Dr. Lovaas started, now led by Scott Wright, Lovaas East Coast led by his wife Linda Wright and Lovaas Midwest in Minneapolis led by their friend Dr. Larsson. Then there is Lovaas Center. in Nevada led by Dr. Lovaas’ son Eric Lovaas which has no connection to Lovaas East, West or Midwest. It can sound confusing, but really it is not.

Dr. Larsson who heads Lovaas Midwest in Minneapolis used to work at Minnesota Autism Center (MAC) back when they were Families for Effective Autism Treatment (FEAT). Under his care is when MAC overbilled Medicaid for autism services over three million dollars and was fined to pay back $600,000. From what I understand Ron Carey fired Larsson in some hallway. Larsson then stole most of MAC’s employees and MAC sued him winning that lawsuit.

To make a long soap opera autism story in Minnesota short, Dr. Larsson continued his ways of overbilling and simultaneous billing when he started Lovaas Midwest. He kept doing this for years despite the state Medicaid agency telling him to not do it. Finally, the state Medicaid agency (under Gov Pawlenty) made a bad deal with Larsson and told him via courts in the case of Huisenga vs. MN State Medicaid agency that they won’t ask back any overpaid funds but he could no longer bill for simultaneous services.

Then CMS audited Lovaas Midwest and found overbilling stating while the state might have a deal with Larsson, the federal government which pays half of the funds will not. Thus, Lovaas was fined by CMS to pay back $2,862,769. Personally, I am not a big fan of Lovaas Midwest nor Dr. Larsson as I think they have bias policies in their clinic, and I am glad someone finally stood up to him and Lovaas.

Below is what CMS said in their outcome.

The provider was wrongly paid for having multiple mental health professionals at the same time for the same child which is not allowed by Medicaid guidelines. Provider was paid for travel time for unrelated services, Provider was paid for services without any child/parent present or non-direct services meaning the child and/or parents were not present as it is stated in Minnesota Statute 256B.0943 Subd. 11, the list is long but you get the point.

Lovaas Midwest is directed to;

Submit payment to the State of Minnesota for $2,862,769, the amount owed to Medicaid. The commissioner will seek recovery from a vendor. The commissioner is authorized to calculate the amount of monetary recovery based on estimation from systematic random samples of claims submitted and paid. The commissioner will recover money by the following means:  Permitting voluntary repayment of money, either in lump sum payment or installment payments; • Deducting or withholding from MHCP payments; • Withholding payments to a provider under the Code of Federal Regulations, title 42, section 447.31.

Where is the outrage or relief from DHS and the welcoming media that reports relentlessly when Somali child care centers sneeze the wrong way or any provider of color does anything wrong? Racial disparity is not just access to health care, it is also how different providers are treated. Anglo providers are given second and third chances, they are able to negotiate or appeal decisions. For minority owned providers – don’t even think about it is the answer.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, According to (Gerhardt & Lainer, 2011) a looming crises of unprecedented magnitude is coming for adults with autism, their families, and the ill prepared and underfunded adult system charged with meeting their needs. Sound stressful and scary, right? that is because it is.

To take advantage of this crises and our state Medicaid agency’s (DHS) lack of oversight and accountability for ABA providers Minnesota Autism Center (MAC) decided to house teenagers to adults (25 to 35 individuals) with autism in their Minnetonka location center. This center is not evaluated or checked by anyone at DHS to assure kids/adults there are learning appropriate functional skills that are transferrable to their communities. DHS has no idea how many individuals go there, their ages, what they are learning or is being billed to them, etc and bleeping etc.

From what I understand from staff that left there or are currently there – Ms. Marshall just collects millions of dollars from DHS with no accountability or oversight by DHS or KEPRO (the agency whose responsibility is to assure they only approve medically necessary treatments, but sadly approve everything with no questions or hesitations). Allegedly, there are fake beds, fake laundry rooms and fake kitchens which is all good except there are no generalizations or community based interventions. In other words, it is all good and dandy if a teenager with ASD can make the fake bed in the center, but it is useless and waste of time and money if they can’t make their own bed or do their own laundry.

Again, I blame our Medicaid agency and KEPRO for failing to even to do a site visit to the hell hole (my humble little opinion) Minnetonka MAC center. According to research, the vast majority of young adults with autism are unemployed. Yet, DHS wastes millions of dollars on places like this MAC Minnetonka center which are just expensive and fruitless.

When will DHS wake the bleeping up and actually do its responsibility of assuring people with autism are treated well, respected like human beings and taught functional and appropriate skills with family input. WHEN??????

When will the likes of Ms. Kathryn Marshall stop bullying and harassing autism children and families. It won’t happen unless DHS steps in or families start taking legal actions.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Minnesota Autism Center (MAC) does applied behavior analysis (ABA) for hundreds of children annually and has made millions of dollars doing it. This is mostly due to the fact that the owners  Mr. Ron Carey, a local politician and Kathryn Marshall, an attorney force their licensed mental health professionals to recommend 40 hours for most of their clients. Most center kids if not all are 40 hours a week or eight hours a day for every child. There ain’t nothing individualized about that approach no matter how they explain it.

Let’s put this into context – a licensed mental health professional’s clinical “judgement” must be based on just that their clinical judgement along with the needs of the child and the family. This is not what happens at MAC. For example, we know from tons of autism research that ABA works best for young children when done intensely. There is no research anywhere in the world for a blanket 40 hours per week for every center kid from 2 to 20 years old, and I would know given that I was a member of IACC (the federal committee that literally reads, goes through all autism research and makes recommendations to Congress and U.S HHS Secretary).

This body of evidence or research does not seem to drive MAC’s clinical or so called clinical team. Instead they are driven by whatever recommendations Mr. Carey or Ms. Marshall say. I have seen many autism parents tell me their child was discharged because MAC demanded 40 hours. I have seen families that Ms. Marshall who is not a licensed mental health professional called and told them to “come pick up your child now”. I have seen families that MAC sent discharge certified letters to because their child was having a behavior in a behavior clinic mind you. This is like an ophthalmologist discharging a patient for having eye problems. I have seen parents cry in despair in front of DHS staff and nothing happens. I have seen children suffer because of what MAC has done and DHS does nothing. I have seen so many problems with MAC’s diluted and greed based clinical judgement and DHS again does nothing. Sooner or later, families will start suing the state agency whose responsibility is to assure children with disabilities including autism are not bullied or harassed.

Next time you hear this treatment plan is based on my clinical judgement – please be aware whose judgement it really is. MAC has been doing this for years and years so far no one seems to correct it permanently. DHS just makes deals and negotiates with them. WTF?

I have seen many mental health professionals and therapist that worked at MAC and asked why they kept recommending an insane amount of hours for almost every child especially in MAC centers. Most of them replied “if they didn’t – they would be fired”.  Some actually were fired by Ms. Marshall or Mr. Carey because of it.

DHS fails our children with autism again. Instead of asking for an objective evaluation for every child to assure quality of medical care that is cost effective and based on child and family needs – they just give MAC a blank check with no oversight or accountability. As a result, many children are discharged if parents don’t comply with 40 hours of ABA and suffer as a result. Imagine if DHS actually started talking to some of those licensed mental health professionals that left or were fired from MAC, abandoned families and advocates to get to the bottom of this and finally address it.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Minnesota Department of Human Services (DHS) is the state’s Medicaid agency and is overseeing the newly passed by the Federal government autism therapy coverage benefit. This passed the state in 2013 and was approved by CMS in March of 2015. I would say DHS had at least years from the state’s point of view and months from the federal government’s view to study and digest this benefit.

They’ve done several other trainings on this and in my opinion did a little bit better than the last one. The last training was for providers. It was about the individual treatment plan policy and the comprehensive evaluation. The way these two items are written into the state plan amendment is very clear. Parents/families have a right to get an objective and non-bias comprehensive multi-disciplinary evaluation (CMDE) for their child. They also can write a week in their child’s life along with any items relating to their culture or family values. Then they can take that CMDE to the treating provider who writes an individual treatment plan based on the CMDE. Sound simple and fair right? well that was the intention.

Then DHS decided to mess things up and give us a confusing and conflicting Sybil like training where they said one thing then said the completely opposite thing. For example, someone asked a question online through the webinar training “what happens if the treating provider disagrees with the CMDE or the family’s preference culture and values, can they appeal and/or not take that child?”.  To my shocking surprise the Sybil trainers said “YES”. WTF?

Then I got irritated and asked “what is the point of getting an objective comprehensive evaluation and the family writing their child’s life in a week and the family’s culture if at the end the treating provider can just disagree and discharge the child”? In other words, why are we wasting money, time and effort to be back to where we are now?

Then the usual happened – first, I was given the hand to try to silence me then I was called …..drum roll please – difficult, disruptive, emotional and angry Black woman. Gee – I wonder where I heard that before. (Don’t worry such rhetoric is my energizing latte)

Afterwords, I called DHS and they told me I misunderstood and that the way its written in the plan is correct. Here is what I think; in private at least with me, DHS says they want to provide person centered services that are individualized, medically necessary, child centered and culturally responsive. Then in public with the providers they say the opposite of they are a provider centered, could care less about culture sensitivity, medical necessity and tell the ABA providers – just use your diluted and greed based clinical judgement to justify abandoning children.

Here is the problem with that idea – it is not what passed in state legislature nor what was approved by the federal government. DHS can you please say what you mean and mean what you say and stick to the script of the actual legislation that passed. I for one am sick and tired of being sick and tired. When will DHS do the right thing for children and families with autism?

By the way, when DHS says to us “we have come a long way or you are not the only one” is no longer good enough. That is like saying to a patient that goes to the ER with pain, and the nurse tells him – you are not the only one or we have come a long way because we now have computers. It does not make the pain and the frustrations any less and is insulting to the victim.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, if you advocate or have a child with autism then you understand everything about autism from intervention to services to research is about politics. Most autism policies are written by state legislatures or congress. Sometimes policies are written or implemented by state and federal agency leaders who are often appointed by politicians. In sum, autism is driven or not by politics and politicians.

Few years ago, I was advocating in Congress for the Combating Autism Act (now Autism Cares Act). I remember I wanted our state of Minnesota to be a state that every congress member – all eight and both senators voted and supported this legislation. So, I decided to contact all of them and ask. If you can believe it I got them all to support Combating Autism Act and vote for. The only one that gave me a little hard time was Rep Cravaack. I think his office told me he supported the bill literally the morning of the vote.

At any rate, I also contacted Speaker Boehner’s office to ask if they can put it up for a vote. And, to my pleasant surprise it was probably one of the easiest political office I have advocated. It took maybe one phone call and one email and I even got the letter below which I did not ask. His staff was so pleasant to deal with and knew their stuff inside out. I didn’t have to explain anything to them. They just got it and to get a letter from the Speaker of America’s political house – well that was a bonus and an honor.

I know the autism community will miss Speaker Boehner for his contributions and compassionate. Below is Speaker Boehner’s letter to me. I wish him luck in his next chapter in which he recently said “he can’t wait to walk to Star Bucks by himself to get a cup of coffee”.

Dear ldil:

Thank you for contacting me regarding autism care and research. I appreciate hearing from you.

As you know, autism is a complex developmental disorder affecting many people today. This life-long disorder deprives children of many abilities, such as interacting with others in ordinary ways, understanding and communicating with others, and having normal reasoning skills. The number of people afflicted with   the disorder grows every day with no known cure or cause. Statistics state that nearly one in every 110 children now live with autism. This disorder leaves permanent effects on the children and their families.

The lnteragency Autism Coordinating Committee IACC) coordinates efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The IACC mission is to: 1) facilitate the efficient and effective exchange of information on ASD activities among the member agencies; 2) coordinate ASD-related activities; and 3) increase public  understanding  of the member agencies’ activities,  programs,  policies, and research by providing a public forum for discussions related to ASD research, screening,  education,  and interventions.

You may be interested to know that funding for autism programs at the Centers for  Disease Control and Prevention  (CDC)  has increased from  less than $300,000  in 1995 to $22.1 million in 2011. During that same period autism  funding at the National Institutes of Health (NIH) increased from $10.5 million in 1995 to an estimated $160 million in 2011. In addition, the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD) supports research on a variety of diseases and disorders. The program administers programs funding on autism, multiple sclerosis, breast cancer, prostate cancer, ovarian cancer, chronic myelogenous leukemia, neurofibromatosis,  and tuberous  sclerosis  research,  among others.  From Fiscal Year 1992 (FY92) through FY10, CDMRP  has received $6 billion in federal funding  for  research. CDMRP is funded at $394.4 million for FY11, including $6.4 million for the autism research program. From FY07 through FY10, the autism research program has received $29.9 million in federal funding.

Representative Chris Smith (R-NJ) has sponsored a bill to confront the challenges of autism, H.R. 2005, the Combating Autism Reauthorization Act of 2011. This legislation would reauthorize the Combating Autism Act for an additional three years, through September 30, 2014. This bill has been referred to the House Committee on Energy and Commerce, who held a legislative hearing in July. As this bill moves through the Committee, rest assured that I will keep your support for autism care and research in mind.

Thank you again for contacting me with your thoughts. Please don’t hesitate to inform me of your concerns in the future. To sign up for email updates, I invite you to visit my website at http://johnboehner.house.gov .

Sincerely,

John A. Boehner

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, U.S Health and Human Services Secretary has announced new members for Interagency Autism Coordinating Committee (IACC). Autism Cares Act (used to be Combat Autism Act) passed Congress over a year ago which is where IACC is under. IACC is a Federal autism committee that has federal and public representatives to update and write a national strategic plan for autism which is sent to the U.S HHS Secretary and Congress.

It is where most of the country’s autism research, services and resources allocation ideas come from. I was a member in last IACC committee and was really hoping that we get another Minnesotan appointed. Sadly, as you can see the list below there is none. However, two of my favorite autism researchers whom I had the pleasure of serving with in the last committee were appointed. Dr. Mandell and Dr. Dawson are new and previous committee members. Congrats to them and everyone else. I wish you luck and look forward to hearing your recommendations and your work in this fun but complex task. So many autism children and families depend on your voice, expertise and skills. I know you will not disappoint them.

My friendly advice to you all would be relax, breathe, never take what parents say personally and always vote based on facts, your experience and expertise.

The public members appointed by Secretary Burwell to serve on the renewed IACC are:

David Amaral, Ph.D.

James Ball, Ed.D., B.C.B.A.-D.

Samantha Crane, J.D.

Geraldine Dawson, Ph.D.

Amy Goodman, M.A.

Shannon Haworth, M.A.

David Mandell, Sc.D.

Brian Parnell, M.S.W., C.S.W.

Kevin Pelphrey, Ph.D.

Edlyn Peña, Ph.D.

Louis Reichardt, Ph.D.

Robert Ring, Ph.D.

John Elder Robison

Alison Singer, M.B.A.

Julie Lounds Taylor, Ph.D.

Alright – so, First let’s describe what Minnesota Department of Human Services or the state Medicaid agency’s responsibilities are; They are suppose to protect and help low income Minnesotans and people with disabilities including autism. In other words, DHS is suppose to be on the side of the state’s vulnerable population.

Today, in one of their kazillian provider meetings – they did completely the opposite of their responsibility and obligations. Let’s remember while Minnesota autism therapy providers specifically ABA had more meetings and trainings than I can count, autism families had almost none, yet this legislation was and is suppose to be for and about autism children and their families.

Today was probably the worst meeting/training I have ever seen DHS conduct for autism. To start with John Z is no longer working on this issue which just made everything they said arrogant, ignorant, confusing, defiant and dismissive. Why was John removed who has been working on this legislation before it was even a seed? This was a stupid move for DHS. 2nd, the person who I guess replaced him Kim kept saying hurtful and wrong statements like “there are providers that will only do 40 hours a week for every child”. WTF? Wouldn’t this defeat the whole purpose of comprehensive multi-disciplinary evaluation (CMDE) and isn’t autism therapy suppose to be individualized? Let me write this with examples of what they said today.

On one hand – they told us that each child must have a CMDE which can be done by the treating provider or an objective one. Good right, wait for it…then the family takes that CMDE to a therapy provider to develop or write an Individual Treatment Plan. Good right, wait for it….the ITP must reflect the CMDE…good right, wait for it…..this is the big one..

The treating provider writes the ITP, but it does not reflect the CMDE, a week in the child’s life (which they said is required) or family preference (which is also required) and when the family disagrees with this ITP…please wait for it because I almost boiled when I heard it today…..drum roll please…….

The provider can say to the family “if you don’t agree with our recommendations – too bad so sad..we are not a good fit for your child and we can’t ethically provide what you are asking, please hit the road and don’t let the door hit your behind”.

So, we have wasted the time of the CMDE provider, the family for writing useless a week in their kid’s life just to give the treating provider the final say. What is the point of CMDE, family preference blah and blah if treating providers can still take or not take whoever the heck they want?

When I asked that question, I was told that is not an appropriate question to ask in a public forum. Now what now? WTF? Then they tried to censor us or silence us by asking that we write our questions. How rude. My advice – don’t have trainings unless you can answer questions and allow time for questions and answers from everyone in your preparation.

It gets better. I also asked what is the discharge criteria and who decides? guess who? still the greedy ABA provider. All DHS now wants is a “rationale”. I kid you not. Currently under the plan they have, providers just have to have a discharge plan and there are providers like MAC that say “we can discharge a child from his/her medically necessary treatment if they are uncooperative or unwilling to follow our recommendations”. Now DHS says well – let’s just add a rationale. How can I explain this in layman’s terms – let’s take MAC as an example since they are the biggest and probably the greediest ABA provider in Minnesota. The owners of MAC Ms. Marshall or Mr. Carey will hire a spineless QSP and tell them to write MAC is ethically unable to provide the treatment the family is requesting and that is “our rationale”.

I am not sure if I should laugh, cry or just scream.

At this DHS autism training today, it felt like I was in a meeting with the Koch Brothers, Warren Buffett or NRA lobbyist and they were defending business owners. The state Medicaid agency whose biggest responsibility is to protect vulnerable and poor autism families stood with the multimillion dollar ABA providers in a publicly funded program that we parents advocated our butts off to get it approved and even considered.

I was extremely disheartened and disappointed at DHS today and shame on them, but this will only energize me to advocate from different lenses including going back to the legislators because what DHS staff said today is NOT what passed in 2013 on a rainy night at 1am. I was there and there is no way in hell DHS is going to omit or change what we worked so hard for which was to help and protect children and families with autism.

Furthermore, this bill passed years ago and the fact that DHS is still confused, behind, can’t answer simple questions or wants to silence and censor families is beyond words can express.

Commissioner Jesson, the buck stops with you and at some point DHS has to be cohesive and sincere in this autism benefit by standing with children and families. You can’t keep giving breaks to the providers while kids get screwed, discharged, discriminated against and suffer. Your staff even had the audacity to say that “discharging or family and provider disagreements are rare”. Are they living in la la land because I know I brought to DHS many families that have been bullied by ABA providers. Many came to you on their own crying and heartbroken. For DHS staff to forget all of those children and parents is cruel and wrong. I ask you take a charge here and stop this insanity. Quite frankly – it is getting tiring asking the same questions and each meeting getting different answers. DHS needs to say what it means and mean what it says and be on the side of vulnerable kids with disabilities.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Chair of Interagency Autism Coordinating Committee (IACC) and Director of National Institute of Mental Health has decided to leave NIMH. I am saddened by this news. I have gotten to know Dr. Insel as the chair of IACC when I was a member and I cannot say enough good things about Dr. Insel. He is simply fantastic.

He is one of my favorite federal government researchers and leaders. He has so much compassion for autism children, adults and families. As our chair, he was always cool, calm and collected. Dr. Insel managed to always put our comments and words into cohesive and meaningful ideas during our 8 hour long meetings at NIH campus in Bethesda Maryland. He gave everyone a chance to speak and contribute.

Dr. Insel gave me so much opportunities at IACC and was the sole initial reason we had Federal funding for Somali autism prevalence research done by the UMN. I remember when I first contacted his office – he did not refer me off to his assistant or office staff. I got a phone appointment along with Dr. Daniels (I simply love her) and they were so kind, listened to our concerns, validated our frustration and decided to do something about it. They invited me to make our case to the full IACC committee during the public hearing which I did. Then towards the end of the meeting, Dr. Insel asked Director of CDC’s disability division – Dr. Boyle, Dr Dawson who was back then Autism Speaks’ representative and NIEH director to answer my questions. He told them to think about and do something about autism in our community. They did and did it fast. I think I got a call maybe few weeks later and was told to come back to DC which I did. It was in that meeting at IACC that a joint collaborative effort was announced. NIMH, CDC, NIEH, Office of Minority Health at NIH and Autism Speaks would contribute almost half a million dollars to Somali autism prevalence research. They would also provide technical assistance. Without Dr. Insel’s push and persistence – this would not have happened.

Another one of Dr. Insel’s many ways he supported us was when IACC members were writing a support letter to Sec Sebelius for autism therapy and most folks wanted to mention private insurance coverage. I asked to include public insurance coverage as well and Dr. Insel supported that 100% and asked CMS representative John to respond. And, as we all know now – CMS announced our last IACC meeting for the last committee that they now are covering autism intervention therapies for public insurance or Medicaid nationwide. Again, Dr. Insel was complete support of equity for everyone.

I think he simply rocks and I will miss his voice of reason and his calming ways he explained autism research with facts and compassion. I think Dr. Insel was the rock and the glue that held IACC together.

Here is Dr. Insel’s announcement.

Thank you Dr. Insel from the bottom of my heart of behalf of so many autism families in Minnesota and across the country. We will miss you and wish you all the best!

Idil – Somali Autism Mom & Minority Advocate

Alright – so, one of my favorite congressman in Minnesota, Kline said he will not seek re-election in 2016. Kline represents Minnesota’s 2nd district. Kline has been the chair of the powerful House Education and Workforce Committee. We met Kline couple of years ago and he has written letters on our behalf to back then U.S HHS Secretary Sebelius and Director of NIH asking them to address our autism concerns which they responded and did address our concerns.

It was so easy dealing with his staff and office especially his health policy person Molly who has since left. Unlike Franken’s office – it was easy drama free and right to the point. Kline was also a member of Congressional autism committee. We asked him to vote and support the Combat autism bill when it was going to be reauthorized which he did. I will miss his staff and his willingness to always help his voters.

We thank everyone in his office in both Minnesota and Washington DC for their support and help and We wish Congressman Kline luck in his next chapter!

Not relating to autism – Kline supports poor minority children who are failing in DFL controlled school districts to have their education funding follow them into better schools and what do you know MN DFLer’s are against it. What a surprise, not really. This includes State Rep Atkins who wants to run for his seat. Please don’t vote for Atkins who is arrogant, ignorant and completely bias towards any racial equity. Atkins has voted against all of our autism legislations in the state legislature and did with arrogance and self-righteous attitude.

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

Idil – Somali Autism Mom & Minority Advocate

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