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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

Alright – so, Minnesota Department of Health has been awarded an autism grant from Health Resources & Services Administration. HRSA has denied this particular grant before at least once – maybe twice to MDH. What changed in HRSA’s mind – you ask. Well – MDH finally put equity and sharing the resources with minority autism community based agencies in their application.

Back two years or so ago, I asked MDH to apply for this grant which is funded under the Combat Autism Act or its new name Autism Cares Act in Congress. This Act funds millions of dollars in autism research, resources,professinal training, services and family training and advocacy just to name a few. Initially MDH wanted to send their usual application where they say – we care about equity, we understand and will DO something about it. MDH wanted the Minnesota Autism Task Force to give them a letter of support and as a member of that committee – I asked that MDH put on the application in writing how exactly they intended to do the minority autism outreach and how much of the funding would go to actual minority operated autism agencies.

Well – to say that created a problem is an understatement. MDH had no desire to put that in writing and I had no desire to sign my name into the Task Force support letter. Then came the chair of the task force back then who I personally like, but had no idea who HRSA was, what the grant was for and the sad statistic for racial autism disparity. The chair just wanted everyone to sign this letter and I stood my ground and refused. I also managed to convince all four state agency commissioners that were members of the task force to agree with me in that reducing racial health disparity is not just about talking, but about sharing resources as well as changing policy and culture. For some reason, I was also able to convince the Governor’s office of this idea. And, since all commissioners work for the governor including MDH – the health policy adviser from Gov Dayton’s office called MDH and asked them to include my language in their application.

The task force chair quit, but really no love lost there because if you are not for equity then you are for inequity and that is what creates double standard and health inequity.

The good news is now our state has been awarded this grant in company of short list of states that have such grant from the Federal government. The other good news is now MDH will HAVE to share the resources and funding with minority based/operated autism agencies that can do outreach and education for autism.

In the end, equity prevailed and poor and minority children with autism won which is what we all should want.  When we share the resources and opportunities with everyone – the haves and the have-nots – everyone wins and succeeds.

Below is the explanation I got from MDH about this grant and the process for it. If you are a rural or minority based/operated autism organization – please contact MDH’s child and maternal health department to apply for this grant and/or participate in this process.

The grant goals are to:

1) Establish community teams (delegates) from three diverse communities (Somali, Hmong, Latino) to provide outreach and resources to families. We will have contracts in place for multiple people in each community to provide the outreach. The teams will get training on the signs and symptoms of ASD as well as key resources that families may need based on input from community representatives.

2)  Create a resource directory that is specific to regions of MN. ICI is working on a resource directory that will identify and catalog information and resources that can be translated and eventually put up on a website (TBD).

3)  Train health care providers who work with different populations around developmental screening, ASD screening and cultural issues to consider during well child care.

4) Creating an evaluation plan to monitor progress made in the grant outcomes and data points in partnership with the departments of education, human services, and DEED. 

All the above activities are done in partnership with the other state agencies as well as with people from culturally diverse communities who have children with autism.

While I might have been the vocal voice – I was always surrounded by strong people who supported our cause. Therefore, I wholeheartedly thank Edward McDonald – Director of Council on Black Minnesotans, Mohamed Mohamud – Director of Somali American Parent Association, as well as commissioners of DHS, MDE and DEED.

Above words do not represent any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright – so, the new Minnesota Department of Human Services’ Autism benefit is almost done – yay. This has been a long and difficult journey for me personally given that it all started after I was discriminated and bullied by so many MN ABA providers.

To put this into a context, currently MN covers and pays for ABA therapy for wealthy fee for service children and families by calling ABA skills training. In other words, for low income managed care kids – ABA is often denied, even though the funding is Medicaid. Think about that for a minute and the level of health disparity it creates and has created for the past several years.

If you are Black or Brown person – you have heard of the sentence “not a good fit” probably more times than you can count. This sentence is used in employment discrimination which is why Minn has the highest Black un-employment in the whole country. It is used in health care setting – hence the horrible racial health disparity we have in Minnesota. Then you add “discretion” and you get wide education gap, justice disparity and high suspension and expulsion for minority students. In other words, discretion mixed with not a good fit is the sole reason of so many gaps and disparities and now we want to add this lethal sentence to Medicaid coverage Autism therapy coverage. Are you bleeping kidding me.

Isn’t it bad enough that most Minnesota’s ABA therapy providers don’t already take minority ASD kids, DHS can not have any more lax oversight and create even more disparity which will only cost more in the long term. In today’s DHS meeting this was the theme from ABA providers who were mainly saying if a parent does not agree with our whatever then they can leave because it is not a good fit and it is our discretion. Can you imagine if a public school or a clinic said that. It would make the news, yet these Minnesota ABA providers that are getting millions of dollars of public funds from both state and Federal are such at ease getting rid of children and families whenever they feel like it and call it their discretion and not a good fit.

They can use their discretion to not take the older kid, the black kid, the minority child, the mother they don’t like, the nonverbal child, etc and etc. DHS can not let this happen in a publicly funded program that is already bias in so many ways. This will lead to so many lawsuits and class action problems because so many children and families will suffer due to a provider’s discretion.

There were other items we talked about today which I can’t possibly write into one blog post, but one that sticks in my mind now was the quality of the therapy and oversight of staff and training of staff.  I heard many ABA providers say we have this good oversight and that great training program. As the Elizabeth Tylor of ABA – I am sure what they say is not what always happens. I along with many other parents have seen a provider have good policies in writing of how they overlap or supervise their staff and evaluate children, yet not follow it. I and other parents have seen ABA centers look like a Hilton lobby with all of the state of the art feel, yet fail our kids miserably. I along with other parents have seen an ABA provider have well written informed consent that has appeal and grievances policies, yet refuse to follow it.

I along with other parents have seen an ABA provider manipulate ITP graphs or justify a child learning one skill to get the treatment, yet discharge a child that learned hundreds of skills in the same time period. I along with other autism parents have seen an ABA therapy provider say to a parent we don’t have staff in your area, yet fill it for different color families. I along with other parents have seen a provider’s psychologist sign off and recommend intensity of hours on an ITP for a child they never evaluated and a family they never met. I along with other parents have done provider surveys and were punished for our opinions because they said if we thought like that, then we were not a good fit for their services. I along with other parents have seen a child get discharged or not accepted for their behaviors by the behavior clinic. In a state with less than two dozen ABA therapy and couple of DBI therapy providers with thousands of autistic children, it is clearly about supply and demand resulting families having few choices and afraid to speak up.

In sum, the notion of leaving this benefit’s quality, oversight, plan of care, etc – to their discretion is cruel, wrong, insane and stupid.

We need from DHS an autism policy that is based on medical necessity based on actual research not the owner’s pocket size or opinion.

We need from DHS an autism benefit policy whereby if parents are bullied, retaliated against or discriminated against – there is a process and a pathway for them.

We need from DHS an autism benefit policy that assures the child gets treatment that is truly child centered, family driven and culturally responsive in reality and when it does not happen – a safe place for families to go. Visiting MN ABA centers or providers who will sell you their sugar ideas and Hilton lobbies is not helpful and waste of time. My friendly and gentle suggestion to DHS would be use common sense, see what other states have put in their state plans or policy books, get technical assistance from CMS and talk to current and past autism ABA parents then make a decision and stick with it.

Imagine if MN child care centers were allowed to function at their discretion. Imagine if public schools were allowed to function at their discretion, imagine if health care clinics that get public funds functioned at their discretion and got rid of patients because they thought it was not a good fit. If you can’t imagine those scenarios then why are autism families being put through it.

The goal should not be to keep any provider in business because we are in short supply. The goal should be to get rid of racist, greedy and in-humane ABA providers and keep compassionate, kind, reasonable and fair minded providers who are in this for the children and families.

We need from DHS to hear and really listen not just to those that show up in these meetings, but maybe send survey to actual ABA families in a anonymous way since most parents are scared their child will get discharge if they complain about an ABA provider. In-case anyone is in denial about Minnesota’s horrible racial disparity read here, here or just google it.

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright – so, by now we should all know that Congress is where all autism everything comes from whether it is research, services, resources, surveillance, etc and etc.

And, in order for any autism bill or autism funding to pass – it must go through the U.S House of Representatives. This includes state funding for autism services, research, and therapies. For example, ABA funding is both Federal from Centers for Medicaid and Medicare and state. In Minnesota ABA is half funded by CMS and half by Minnesota, which means for DHS to pay for ABA – it must be matched by CMS, which gets their funding by Congress. Another example, Minnesota department of health gets their majority of their funding from the Federal government from congressionally approved sources. MDH’s child and maternal health which autism is under is funded by block grants from Health Resources and Services Administration who get their funding from Congress. In other words, every area in autism depends on Congressional funding and allocation of resources.

Above reasons is why I contacted Speaker Boehner’s office back in 2011 when I was advocating for the Combating autism act of 2011. Speaker Boehner has been one of the easiest people for me to advocate in Congress. There was hardly any drama or arrogance in his office or within his staff. In fact, I got below letter from him and really how many autism advocates can say the Speaker of the U.S House of Representatives sent them a letter. Recently, Speaker Boehner also supported the ABLE Act that just passed which will help all people with disabilities.

Dear Idil:

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 Interagency 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

Therefore, I will always support Speaker Boehner and I am glad that he won. I know that we in the autism community have a friend in Speaker John Boehner. It is worth noting that Minnesota Republican members in Congress voted for him, which is great. Here is those that voted for him and the measly couple of dozen that did not. What I found interesting was that Minority leader Nancy Pelosi also had some defectors, but no one in the media even looked twice at them. By the same token, the 25 out of hundreds that voted against Boehner was all big news. Unhhh – ain’t that interesting, how selective liberal media is in their news reporting. I wonder how that relates to autism, think about it.

Above words do not reflect any candidate, agency or committee

Idil – Somali Autism Mom & Minority Advocate

Alright – so, I am always advocating against these blood sucking MN ABA therapy providers. And, I started thinking why does ABA cost over $100,000 per kid per year in Minnesota? Is that why our state attracts these blood sucking greedy bastards – not a typo. So, I looked how other states cover and pay for ABA therapy. First, let me say clearly before I get contacted by mad ASD parents asking what I have against ABA. Nothing. I really think, let me re-phrase that – I know Applied Behavior Analysis works and helps when done right, early and intensely for children with Autism Spectrum Disorder.

Many have heard refer to myself in state committees or even in Federal autism committee as the Elizabeth Tylor of ABA. I have been divorced and belittled by so many of them which is why I became an advocate for the children and families and usually against these blood sucking and racist MN ABA providers. Most Minnesota ABA providers don’t take minority children when they are young which is when ABA works best. Or they discharge them to make room for non minority ASD kids. I kid you not, this happened to me and it happens to so many other Somali parents who often don’t know who to call or where to get help. I have seen an ABA provider tell me my child would not be cured from autism at age 5 and that teaching him at a cost of $100,000 was too expensive. Therefore, it was not worth the cost. By the same token, this same ABA provider was doing ABA therapy for non minority autistic kids who were older than my son, some twice as old for the same $100,000 per year. If you are thinking how this made me feel. I was hundred degrees above livid and energized. It is the reason, I became a fearless advocate for minority children and ABA. It is the reason, Minn passed the first and only its kind of ABA therapy for low income MA kids in the country. It is the reason CMS changed its rules under EPSDT for autism and ABA.

To say it drove me is an understatement. No parent should feel what this provider made me feel. And, no child’s learning dreams should be crushed by racist ABA providers. As a result of our advocacy,  few of the MN ABA started taking our kids usually when they are older and can’t really benefit from intensive 40 hours of ABA therapy, but sadly they demand it and if parents refuse or even ask to do 3/4 of the hours, they are often discharged. I have seen this at least weekly.

Now what this has done is attract minority blood sucking greedy ABA wanna be providers. For instance, there is a Somali person who now wants to open an ABA center. Not bad right? Well – it would not be if he actually understood ABA autism therapy from lawyers ABA. If he actually cared about autism children and families. If the daycare he owns now did not have so many child safety violations. In other words, because MN ABA costs over $100,000 per kid which is outrageous and wrong is now attracting everyone and their mamas to open an ABA center.

Our children are vulnerable and can’t tell us what happened. I ask DHS to have a better oversight and not let any greedy jerk open an ABA center even if there is a need for diverse ABA centers. Let me put it this way, Justice Thomas looks like me, but I would not trust him with my voting rights. Just because they look like us does not automatically mean they care about our children. Nor does it mean they understand autism and ABA therapy.

So, I ask Commissioner Jesson who I think is simply amazing and God knows I have been barking in her corner since her first week of becoming the DHS Commissioner.

True side story, the first time I met Commissioner Jesson was when she came to testify or introduce herself to the senate health committee back in 2011 when Sen Berglin was the Chair. I saw Berglin going to the committee in that long hallway that connects the state office bldg to the Capitol where the senate hearings are located. And, I thought to myself how lucky I was because that is a long hallway and Sen Berglin was a hard person to see. But now she has no choice but to talk to me. So, I bombarded her with what to ask Jesson and gave her kazilian notes and information. I am sure she was thinking – calgon please take me away.

At any rate, Sen Berglin asked Jesson what she intended to do about autism especially in our community. And, I remember Jesson said to her “I have only been in this job for 4 days”. So, I gave a note to one of the pages to give to Berglin that said “that is four days too long – get cracking already.” Anyway, to make a long story short from that day on – I have been consistently and persistently asking DHS to assure there is no racism in MN ABA providers. And, there won’t be hopefully because we have passed this new MN ASD benefit.

Now and almost end of my advocacy with them, I ask  Commissioner Jesson and DHS Autism team;

1. Why does ABA therapy cost $100,000 in Minnesota? this only attracts greedy bastards who could care less about our kids?

2. If ABA full intensive costs $50,000 in WI and even less in many other states – why is it so much here?

3. Is there a way for DHS and managed care to assure ABA does not cost this high and that it is reasonable so that only those that care about our kids stay in the business and greedy ones leave?

4. When a parent is discriminated against by an ABA provider, where and who should they call and What rights do they have?

5. When a child is older and does not need 40 hours of intensive ABA therapy as research states, yet ABA provider forces them to, where do parents call to get help and what are their rights?

6. Can you please make sure just because someone has CTSS certification does not mean they can operate an autism center? CTSS is under such big umbrella and those that have CTSS does not necessarily know or understand ABA or autism.

7. Can DHS have clear rules and policies that allows parents to see and visit their children in ABA centers without being bullied by the owners?

8. Can parents have access to their children’s ABA records without hesitations from ABA owners?

9. Can DHS assure the child is actually learning what is in his/her ITP and if not where do parents go for help or questions?

10. Can DHS make sure greedy providers are not prescribing a blanket 40 hours for 20 year old autistic or even a 15 year old?  There is no research for intensive 40 hours of ABA at this age.

11. I have seen ABA providers tell me and other parents that we could not comment or suggest what our children should learn on the ITP (individual treatment plan), yet the Minn Statute that governs CTSS clearly states treatment should be child centered, family driven and culturally responsive. What happens when these blood sucking ABA providers refuse to follow that and discharge families that dare question their kids treatment programs? Think of it this way, IEP is funded the same means and method as ITP which are both Federal and State, yet parents have so much rights and responsibilities in IEP because the rules and polices are clear and MDE does a good job in assuring that. But for some reason, DHS is loose in ITP policies and family rights and responsibilities. Please change this so that as parents we are in the driver seat of what and how our kids learn because we know them best and their success or failure affects us the most. Our kids should be looked as children not as dollar signs by these blood sucking MN ABA providers. This must change. ABA therapy must be necessary, cost effective, family friendly and always child focused – period. Oh, and not 40 hours for zero to 21 years old or forever. There is no research for that – I assure you, I checked high and low for it.

Again, I am so grateful to Commissioner Jesson, Asst Comm Barry, Loren and Anne H for their support for the thousands of Minn autism families. And, I am personally thankful to DHS for always taking on the side of equality and fairness above all. In sum, Wall Street should have nothing in common with autism. And, ABA providers should not be making six figures to treat our kids when the cost is half or even 1/3 in other states. The fact that Minnesota Medicaid agency pays ABA therapy more than CA, WA or HI is based on greed not cost of living or medical necessity. In addition, it is not medically necessary to have multiple therapists at the same-time for the same child. No other state does this, so why does DHS allow these blood sucking ABA providers bully them. Finally, KEPRO needs training on what medical necessity is and what ABA research says before approving a blanket 40 hours for every child, that is insane and stupid.

DHS – you pay these providers, you inspect them, you certify them and you approve the payments. I ask you to please use common sense and compassion in this.

ABA cost in Minnesota article by Mpls Tribune.

Double standard in Minn ABA by Mpls Tribune.

How much ABA costs in other states.

IACC and services research for the past five years. (note, as a member of this Federal IACC services and treatment subcommittee and I’ve read every research that came out for the  past five years, so I am not talking out of my you know what).

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

Idil – Somali Autism Mom & Minority Advocate