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Alright – so, One of my favorite state agency commissioners, Dr. Brenda Cassellius of Minnesota Department of Education has applied to be the next Superintendent for Minneapolis Public Schools. While it is sad to lose Commissioner Cassellius at MDE, she will make an amazing leader at MPS. I just send below email to the board asking for their support and hire Dr. Cassellius. She is qualified and has the can do attitude to uplift all kids in the district.

Dear Madam Chair and Minneapolis School Board Members,

My name is Idil Abdull, I am an autism mom and advocate. I am writing this letter to you in support of Dr. Brenda Cassellius to be the next Minneapolis Public Schools superintendent.

I am sure you have a difficult task selecting the best qualified person that will assure not just decreasing racial education gap, but all kids learn to their full potential, all parents listened to and all communities engaged. Dr. Cassellius is the perfect and the right person to accomplish all of that and more.

I have contacted Dr. Cassellius more times than I can count asking help and support for autism. She has always addressed whatever the issue big or small. She has never told me once she was too important to speak with a parent because she was a commissioner for the whole state education department or she was too busy. Dr. Cassellius always made time for everyone in every concern. She is easily approachable and engaging with every parent and community member. Dr. Cassellius looks at every education problem with a compassionate heart, a practical mind and a thoughtful soul.

One perfect example: I went to a workshop that was done by Pacer with funding from Minnesota Department of Education (MDE) few years ago for parents with special needs children. There were many parents and I was the only parent from a minority community. I remember vividly every word the speakers said in educating these families. My favorite part was when they taught the parents how to talk to their child’s teacher and how to advocate for their child’s strengths. I remember thinking “wow”. Imagine if parents from under-served communities also learned this and were able to speak and advocate for their children.

Needless to say, I contacted Commissioner Cassellius and then Assistant Commissioner Elia Bruggeman. Without hesitation or delays, they both met with me and one of our community leaders, Mr. Mohamed Mohamud of Somali American Parent Association. We asked Commissioner Cassellius if MDE can do similar workshop for our community (see attached notice). Without even a blink or delay, she agreed and asked Elia Bruggeman to work with us. In just short few weeks after that MDE sponsored a workshop to educate and empower our community.

Another example: Maybe a year ago or so I contacted Commissioner Cassellius about a child with autism in Harrison Education school in Minneapolis. I think I might’ve contacted the Mpls board as well who also has been very helpful. Commissioner Cassellius contacted Mr. Goar and asked to help this child.

You see – no matter the issue whether it is for one child or a whole community, Dr. Cassellius finds a thoughtful and practical way to address it.

I know she will make a fantastic superintendent in Minneapolis Public Schools. I hope you give Dr. Cassellius the opportunity to use her talents, expertise and background to help all students in Minneapolis public schools.

I thank you so much for your time and consideration.

Sincerely,

Idil Abdull – Autism mom and Minority Advocate

As usual, above words do not reflect any agency, committee or candidate.

Alright – so, Minnesota Autism Center who is arguably the biggest ABA therapy provider in Minnesota (not the best though) has again failed to protect children with autism from abuse and neglect.

Katie Strong who is a licensed professional clinical counselor and by law is a mandated reporter has failed to report abuse in MAC Mankato location. Ms. Keri Adams who is the clinical supervisor there has been charged by the Mankato authorities. (finally a prosecutor with the guts to stand up for kids with autism against big bad-ass bully MAC). Ms. Adams claims that she only reported the abuse to the program supervisor which in this case was Ms. Strong. Needless to say and not surprisingly Ms. Adams nor Ms. Strong reported this to the authorities or DHS as required.

MAC Mankato center was given a warning by the Mankato police department before this incident in December of 2015 when they also failed to report a child that hit his head in their center so bad that he was vomiting.

This is exactly why our state needs to license these blood sucking ABA providers. We can’t have children getting hurt and covering up because owners and directors want to bury it. As an autism mom – this pisses me off to my core and as an autism advocate this frustrates me. Why can’t DHS wake the hell up and do something about this. DHS needs to prevent such incidents by holding ABA providers accountable. There must be some kind of statewide policy to protect these vulnerable kids with ASD and DHS needs to take the lead.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, finally Minnesota Department of Human Services (DHS) gets a backbone and stands up for children with autism and their families. DHS issued a corrective action against Minnesota Autism Center (MAC) few weeks ago for how they discharge and abuse children with autism and their families.

From what I understand this is first such action from DHS. For years and even over a decade, MAC has discharged children for any reason and for everything under the sun. MAC’s director Ms. Marshall who is an attorney by training would just call families and tell them “come pick up your child, MAC is discharging him”, or send a letter to a family telling them to not bother bringing their child for therapy again, or just send a text or email to a family and tell them their child’s services are done. I kid you not, Ms. Marshall who is not trained in autism therapy would just either just do these things or dictate one of her spineless mental health professionals to do it.

Meanwhile, children would suffer because their medically necessary treatments ended abruptly and parents would be in despair and frustrated. Sadly, when parents contacted DHS to do something nothing was ever done. DHS told many families there was nothing they could do. The problem with that statement was everything. DHS funds, certifies and audits MAC and should’ve have done something years ago. But as they say late is better than never.

Finally, DHS stood up to MAC and told them how they discharged children from their medically necessary treatments was wrong. They were not in complaint with state statute under CTSS of child centered, family friendly and culturally responsive. Furthermore, MAC even violated some of their own policy. This of course was Mozart music to my ears as the Elizabeth Tylor of ABA, I am sick and tired of being bullied, harassed and intimated by Minn ABA providers. It is time to stand up for kids with autism and their families.

MAC is now required to submit the children they discharge and their reason including parental involvement. In other words, Ms. Marshall can no longer just call a parent and bully them or discharge their child because she felt like it. Oh, and if a parent wants to see their child in one of their centers, they can do that whereas before parents had to make an appointment to see their children in therapy. Imagine that, what the heck is MAC hiding that parents can’t see their own kids in therapy in a publicly funded program – Medicaid.

If you are a parent whose child was discharged by MAC and you either disagree or had no idea, please contact DHS autism team and let them know.

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

Idil – Autism Mom & Minority Advocate

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