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Alright – so, it is the end of the state legislative session and as usual, most autism families and almost all Somali EIDBI agencies are sleeping. Ugh, so sad and depressing. At any rate, I sent my written testimony and will try to orally testify on 4.9.25. I urge autism families and EIDBI agencies to do the same. Speak from your heart and perspective. Noor is the co-chair in this committee, it is important to note – his district has the highest autism rate in the state and arguably in the nation.

Minnesota House
Human Services Finance & Policy
Chairs: Noor and Schomacker
4.9.2025

Re: HF 2434 Opposing the Gov’s Autism Language for EIDBI

Co-Chairs Noor and Schomacker, my name is Idil Abdull, I am a Somali Autism Mom and retired advocate. I also advocated for EIDBI back when it passed as a 1915i waiver on 5.16.13 on a rainy Thursday night. I feverishly oppose the language of this bill for many reasons.

1. There were not robust and engaging conversations with autism families nor EIDBI agencies when DHS produced these self-serving rules.
2. DHS refuses to provide EIDBI training that is person-centered to autism families and agencies.
3. We have been asking Chair Noor since 2023 to add EIDBI training which he has not done thus far.
4. DHS wants to act the prosecutor, the judge, and the jury in autism services under EIDBI without any rights for us to appeal administratively to an objective        person and/or agency. How is that exactly right?
5. I would propose adding EIDBI training for both the families and agencies to ensure they understand the policy and statute.
6. I would decrease EIDBI staff from 3 to 1, that is waste of time since they mostly do not do anything meaningful – ever.
7. I would add the ability to appeal to an administrative judge if/when DHS closes an agency wrongly and unjustly.
8. I would add the new OIG office to audit and oversee DHS’ programs, especially EIDBI, to ensure fairness and objectivity.
9. I would put a moratorium on EIDBI until current ones know what they are doing and do it correctly in a manner that helps the children and families.
10. I would ask DHS to send you and the public the answers to the many questions you asked the last time they were on this committee explaining EIDBI.                There were a lot of questions they were not able to answer. DHS should come prepared.

Sincerely,

Idil Abdull – Somali Autism Mom & Retired Advocate

The above words do not represent any candidate, agency, or committee.

Idil Abdull

Alright – so, first my heart and prayers are with all the families who lost children to drowning. Sadly and heartbreakingly, there were two children with autism who drowned last year in Minnesota. No family should go through that.

This gained a lot of news attention and rightfully so. It also made lots of people get interested in this issue and advocate for it from different perspectives. Sen. Mohamed in Minnesota Senate introduced a bill SF 3040 to modify the current language in waiver services under CDCS and CFSS. She attempted to explain to allow families who already has wavier or CFSS services to use such funding for swimming lessons.

Now, that is a lot to understand and process unless you are a waiver policy junkie which I am. Sen. Mohamed was not able to clearly explain when Sen. Utke and Sen. Abeler asked – does this have a fiscal note. DHS person said – maybe, we do not know. DHS should know better.

Let me explain in the words of Denzel Washington in Philadelphia: 

1. No, this bill should NOT have any fiscal note.
2. Yes, the current policy technically should allow it because it is a waiver that is person-centered and consumer directed.
3. Yes, autism families including me and countless others have gotten swimming lessons for their children with autism via the waiver CDCS.
4. Recently, counties have started denying autism families the whole cost by not saying it is a recreational but that families should pay the extra cost that is beyond what it would cost for a typical child. Example: You have a typical kid who is getting swimming lessons in a group setting because he/she has no sensory, safety, motor imitation issues and can learn how to swim in a group of 2 or 3 other kids. That cost is $50 per lesson. In parallel, a child with autism has no safety skills, has sensory issues, and no imitation skills. He/she needs one on one swimming lesson that will cost $75 per lesson. The counties started saying the waiver will cover the additional cost that is above and beyond what a typical kid needs which in this case would be $25 per lesson. The counties say parents still must bear some responsibility taking their child to swimming lessons and we will cover the extra fee.
5. I agree with that because the waiver should not replace parental responsibility. If your child does NOT have autism, you should still take him/her to learn how to swim. That is parental responsibility. The county does not typically say swimming is a recreational.
6. Now, let’s say a typical child learns how to swim in 25 to 30 lessons which is the average but a child with autism will take years to learn then the county approves the cost above and beyond the cost for a typical child. I also agree with this.
7. Finally, any family whose swimming is denied by the county via CDCS or CFSS can appeal to a judge. I know families are not lawyers but after a while it gets easier to just appeal if the policy is in your favor which it is if asking above and beyond swimming lessons than a typical child.
8. Oh and the Hopkins kid’s name is Waeys not Aways. Plus, it would’ve been right to name this bill after him and Mohamed, and ask their families to testify. That is more powerful than anyone else – to hear from the parents who went through it.

In summary, while the bill has good intentions, the explanation was less than stellar and not cohesive by Sen. Mohamed, DHS nor the testifiers.

The above words do not represent any candidate, agency, or committee.

Idil – Somali Autism Mom & Retired Advocate

Alright – so, from day one, I knew he was turafatoore. That means never mean what he says and never says what he means. He constantly dances around the issue, asks more questions with every question. Asks you to go to that person and this person for things he is clearly in charge of, and blames everyone especially the GOPs for probably snowing in Minnesota. How lovely and original.

I met Sen. Hoffman over a decade ago when he voted against what is today known as EIDBI on the senate floor in 2013. He voted against everything about autism back then as most dflers did. Let me take you back in memory lane. Back in early 2010s, Rep. Norton (also known as the queen of autism disparity) and now the mayor of Rochester Minnesota kept introducing legislations that wanted to take funds from the health and human services budget to subsidize private insurance companies to pay for autism therapy while it denied low income autism families for the same therapy. Nope, not kidding.

In fact, it was the MN Republican legislators (Benson, Gottwalt, Abeler, etc.) who voted for Medicaid to cover autism therapy while the MN house dflers and many dfl senators including Hoffman voted against it. So if you are a Somali person and want to preach how welcoming and inclusive Hoffman is, please go back to legislative history. Don’t believe his empty calorie charm.

Now in the end in giving credit where credit is due, it was Gov. Dayton a dfler who added $12 million to his budget in 2013 to cover autism therapy for children with autism. The senate voted against it including Sen. Hoffman, Eaton, most of them. The House voted against it including Rep. Norton, Huntley, most of them. Then in conference committee, we (Somali autism parents and community members) went to Sen. Laurey and Sen. Cohen and convinced them to eliminate Norton’s bill and add Gov. Dayton’s language. That is exactly what passed on a rainy Thursday night on May 16th, 2013. Then we went to CMS and convinced them to do it for all states in July of 2014. 

I blogged and documented all of this back then. It seems that Sen. Hoffman wants to vote against autism and we should be happy and thank him. No way. We have the right to criticize his votes and policies. In fact, when non-Somali autism parents or any other group like Isaiah does not like his policies and criticize him and campaign against him, guess what? he is ok with it and even apologizes. But for us – not allowed. How do you like them apples.

Listen Sen. Hoffman, I do not have to like you and vice versa. But know you are a publicly elected official and is supposed to help all Minnesotans – period. I personally think you should be defeated next election by someone who cares about Minnesotans and means what he/she says by doing it.

I hope you stop learning two words in every language pretending to care which you do not. I also hope you stop giving people the run around. You can simply say – I cannot write, author or support xyz issue. That is fair and you have that audacity. But when you promise things you know will never be delivered and waste people’s time is a higher level of cruelty and hurtful. You also must accept to learn that anyone from anywhere in the state has the right to be happy or not happy with your policies. If you want to be liked by everyone, maybe you should work in a shoe store. I am sure everyone is happy there.

I wonder Sen. Hoffman when you wrote this Op-Ed, and those on the other side saw your view as offensive and sensational, did you also get angry at them and try to vilify them. My guess is no, because we all have the right to our truth and opinions.

One of my favorite show is Frasier, I must’ve watch it kazilian times. One of my favorite episodes is this one.

One of my favorite columns was Dear Abby Questions are good if it leads to answers and deeper understanding not to give people the run around and waste time. Have you ever listened to Joel Osteen – he talks common sense things and ties it to God. He always starts with a joke, this is my favorite. Every ethnicity has different strengths and things they are good at or known for. For Somalis it is “Fadhi ku dirir”. That is what makes us different and same in a humane manner.

The above words do not represent any committee, agency or candidate.

Idil – Somali Autism Mom & Retired Advocate

Alright – so, unless you live or want to live under a rock, you have read or heard Somali autism parents and members of the Somali community initiated and took it to the finish line the law that passed 5.2013 which allowed medical assistance to cover autism therapy. This was done when the non-Somali autism community including parents and mainstream agencies testified and lobbied against it. They wanted the state to subsidize private insurance companies and cover ABA therapy. Clearly, we beat them. Don’t hate the player – hate the game. We used simple hard-work, strategic and focused advocacy to the end of this legislation.

Move forward to 10 years later, Somalis are opening autism centers like no other community. This is good, bad, and ugly.

Let’s start with the good:

1. There are now many, ok some young Somali professionals who are licensed mental professionals. Yum.
2. There are highly educated people opening some of the agencies with integrity and ethics. Yum
3. They are teaching our children what mainstream agencies did not – actual skills and progress is being made. Yum.
4. Many of them care about autism as it affects someone in their family. Good they care, yuk that autism is high in our children.

Now that bad:

1. Almost all of them refuse to learn about legislation, history of EIDBI, and policies. Yuky.
2. Almost all of them refuse to defend themselves and their work. Yuky.
3. Almost all of them kiss the ass of those who were against the very benefit they are now functioning under. Yuky.
4. Almost all of them are confused about this benefit, and do not want to learn. Yuky.

Then the ugly:

1. Few of them think this benefit or autism is a money-making machine. Yuckier and may you go to hell.
2. Few of them are not helping the children and families learn the needed skills. Yuckier.
3. Few of them have no idea what the heck autism is and sometimes what EIDBI stands for. Are you bleeping kidding me? Yuckier.
4. Few of them are exploiting tired and sad autism families to fatten their pockets. yuckier and may you go to hell.

Now, who the heck am I and what gives me the audacity to say above words. I am glad you asked. Let me introduce myself.

1. My son was discharged by racist and inhuman person Dr. Eric Larsson when my kid was five years old. Larsson told me – he would never be cured from autism. I thought my world ended and cried like one of Oprah’s ugly cries.
2. I then begged Larsson and his fellow Lovaas owners, Linda Wright in NJ and Scott Wright in CA. They sided with Larsson and refused to take my son back.
3. I then went to Arc, and the MN Ombudsman’s office. They met with Larsson and he refused to take my son back.
4. I then went to complain to the Governor’s office (Pawlenty) to see if my son had any rights.
5. Pawlenty’s office referred me to DHS who said – they do not even cover ABA. What now?
6. This started our advocacy journey. We had to find out what DHS meant they do not cover ABA. They were covering for my son and my fellow autism mom (Hodan) daughter.
7. Hodan, Istahil and Idil go to the Somali community leaders (Dr. Fahia, Mohamed Jibril, and Hussein Samatar) to help.
8. Other Somali autism parents especially fathers join the cause (Cascase, Jama, Yusuf, Fanax, Abdihakin, Nuur, & Abdiqadir Diriye)
9. We testify in every committee in the House and Senate.
10. Rep. Abeler (he was in the House back then) and chaired a committee proposes DHS to come up with what the heck it pays and what it can cover.
11. Finally, with the help of Mpls Tribune Maura Lerner and Pioneer Press Chris S cover the double standard ABA coverage in Minn and how low-income kids are not getting covered.
12. We go to the Governor’s office asking to add MA to cover ABA therapy.
13. Finally, DHS commissioner Jesson (I miss her) and Governor Dayton added it to their Human services budget.
14. Most of the Somali community and parents are tired now and slowly but surely start not coming to the capitol.
15. Meanwhile the non-Somali autism community and families get organized; they hire a lobbyist and a publicist.
16. Every (five of them PIE, Lazarus, Lovaas, Holland, and Rochester center for Autism) join the non-Somali autism advocacy efforts which wanted the state to cover ABA for the private insurance autism family but not for the low-income medical assistance family. If you don’t know history, you will befriend an enemy. MAC stays neutral and does not join plus; the leadership of MAC then (Ron Carry and Kathryn Marshall) hate Larsson who is organizing this anti low-income autism family.
17. Dayten added twelve million dollars which the House voted down and the Senate voted down, but the House added the private insurance bill by Rep. Norton from Rochester and deleted the governors for the low-income autism family.
18. The Senate votes down both the private insurance and the low-income.
19. It is now the conference committee, and we are down on both committees and the house has the bill we do not want.
20. Dr. Fahia and I go to Sen. Laurey and Sen. Cohen who chaired the finance committee and was a member of the Confederation Somali Community of Minn and we ask to tell Laurey to put our bill back and kill the private insurance one.
21. The Governor’s health policy calls me in the middle of the night during the conference committee and says, “the governor wants to help the private insurance kid too”. I say sure but they cannot take money from the state budget and subsidize BCBS or any private insurance. She says, “let me see if that is possible”. She calls again and says the House and Senate agreed to this.
22. 1915i waiver that will cover both developmental and behavior intervention passes the health and human services conference committee in the middle of the night on a rainy Thursday night on 5.16.2013.
23. I was the only Somali, the only black/brown person in the committee during this time as people got tired and left.
24. I sit on those long stairs in the Capitol being grateful, tired, and overjoyed.
25. I do not stop there; I get appointed by the Obama administration to be a member of the prestigious federal autism committee IACC.
26. I started advocating the Centers for Medicare and Medicaid cover autism therapy for all low-income autism families whether they lived in Minnesota to Montana or from Alabama to Alaska.
27. So many in the committee agree and have ideas. We all pressure CMS
28. On July 8th, 2014, CMS announces – the federal government will cover both developmental and behavior interventions.
29. I come back to Minn and see if we can change our 1915i waiver and add autism therapy to the state Medicaid plan. Commissioner Jesson, Coleman and Anne H agree.
30. Minnesota requests EIDBI and changes from a waiver to adding under EPSDT.
31. The federal government approves Minnesota’s plan amendment in March 2015.
32. From 2020 to 2024, DHS approves so many Somali EIDBI agencies without adequate training and education leading to the mess we are in now.

Viola! That is, we did it. You see, I have the right to tell you “If you are not doing EIDBI for the right reason and wanting to teach our children skills and empower our families then please leave and screw you”. We have put blood/sweat/tears into this for our children and our families – full stop.

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, the Minnesota Senate Human Services Committee is having a hearing on 1.29.25. As usual, the meeting information is confusing. It does not say if public testimony is allowed or not. The people on the agenda are secret and no one knows until they show up. Ugh. Hoffman again. When will people vote this subjective biased legislator out. Anyway, I sent below written testimony, not sure if it will be part of the public record or not. It is like playing – what is behind door number one or something game.

Co-Chairs and members, I am hoping this can get into the committee’s record and I am allowed to testify. My name is Idil Abdull; I am a Somali Autism Mom & trying to retire advocate.

I want to start by telling you this committee has been painful to follow and send comments. There are no directions or guidance on when public testimony is allowed or not.  The agenda and the people who are invited have been secret at least for the one last week.

Please know that this is a public committee discussing public policy and it must be fair and open to the public – full stop.

Now, let me give you my comments regarding a day too late and a dollar too short licensure EIDBI proposal by DHS:

1. I and other Somali autism parents went to DHS almost 10 years ago and reported child abuse and maltreatment. There was a therapist who worked at Minnesota Autism Center in the Woodbury location who stated she witnessed child abuse and cruel treatments. She also said MAC knew and hid the abuse from the families. There was also another abuse in MAC location in Mankato that DHS did nothing. Is DHS also going to license CTSS agencies who provide autism therapy since many autism centers function under that?

https://www.mankatofreepress.com/news/local_news/minnesota-autism-center-supervisor-faces-criminal-charge/article_b815e5ae-ea03-11e5-91b8-13bfe6779a2c.html

2. DHS told the therapist report to the county who said call the police who did nothing because MAC management denied it all.
3. There was a Somali autism mom whose child was hit and did report again to DHS, the police, and the county. Guess what happened – nada and nothing.
4. I cannot help but think DHS now mentioning maltreatment in a Somali owned autism therapy agency is nothing short of racism and unfair overreach. If DHS cared about children with autism, they would have done something about it when many autism families reported abuse, but the difference was those agencies were owned by white Americans, not Somali Americans. Think about that and tell me it is not differential treatment.
5. I hope the two Somali senators in this committee stay vigilant and take anything DHS says with a grain of salt. They have been unfair and biased at best towards our community. The same with the media who refused to report any wrongdoing by any white autism therapy agencies but when a Somali sneezes the wrong way, they are all over it like white on rice.
6. DHS states there are thousands of children with autism being served by current EIDBI providers. That is good news. Those are children who did not get services before EIDBI and will hopefully depend less on the system.
7. DHS fails to tell us the race/ethnicity of the children being served and the current EIDBI providers, why?
8. DHS fails to mention autism is 1 in 16 in Somali children born in Minnesota who are four years old. You know what these children are – as American as apple pie. Why is DHS and the legislators pretending to be blind about it? If these kids do not get early intervention, they will depend on the system which will be 1000% more expensive than getting services through EIDBI.
9. DHS mentions following the BACB board, why? There are other better qualified behavior analysis boards such as Qualified Applied Behavior Analysis (QABA) which is a national and internationally recognized board that focuses on autism unlike the BACB.
10. If the case load of the qualified supervising professional and/or the behavior analyst is limited to twelve children or so, and EIDBI is serving thousands, wouldn’t that mean kids will not get services, at most there are only three hundred or so behavior analysts in Minnesota. DHS cannot limit access for children.
11. DHS mentions things they can fix now such as having a business phone line, email that is privacy compliant, and safe place to do therapy. Instead of complaining about miniscule items they have the power to do, they should give each new and/or current EIDBI agency a checklist to follow. DHS needs to do training for new and current EIDBI providers in-person, not a drive through webinar where they silence people. They preach person-centered but fail to follow it.
12. DHS needs to provide stricter oversight to ensure the children are learning, the family understands their rights and responsibilities and progress is tangible. They can do this now and do not need a license; they are simply an agency of minimum effort and only takes up issues if God forbid is in the news.

Correction: It seems that Sen. Hoffman DID add a Somali Autism advocacy agency – MAAN. I retract my statements in this blog regarding Hoffman. Fair is fair. Plus, I told him I would blog positively if treated us fairly. Thanks Sen. Hoffman. 

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

Idil Abdull – Somali Autism Mom & Retired Advocate

Alright so, the new co – chairs in Minnesota Human Services had its first hearing about DHS and oversight today 1.22.25. Of course, autism has been interjected in the middle of this and what do you know even when there are two Somali senators – no Somali autism parent or provider was allowed to testify.

Are these people kidding me? The dfler Hoffman and the republican Rasmusson willingly denied our community to speak. There were even Somali autism parents in the audience. Bleeping unbelievable.

Let’s remember Hoffman just had a fundraiser by the Somali community in Zawadi, Bloomington. Akhas caleeg Soomaaliyeey.

One of them (Jules Edwards) said so many wrong and false things about autism therapy such as ABA therapy. This is what happens when you do not know research. What the heck was that? Then she said the Autism ABA agencies are committing so much fraud. Seriously, and they do not allow no one from the actual community that is being picked on to testify. Ms. Edwards – please sit down and shut-up. You have zero idea about ABA and stop comparing to conversion therapy. Autism is a developmental disorder that is an actual medical condition and a disability – full stop. It has zero to do with people’s lifestyle choices. Now, I know, I should not argue with autistic people but excuse the heck out of me when they make no sense, and they are supposed to speak for my son and so many others. Ms. Edwards, I would give every organ in my body for my son to not have autism or even to be verbal.

Furthermore, it was ABA therapy that taught him every skill he knows from being toilet trained to using functional communication via a device. Again, I need you to sit down and shut up. You and the likes of you never speak for children who are profoundly autistic. You have no idea what the heck you were saying. Do you know that ABA is one of the established interventions that is recommended by the Centers for Disease Control and Prevention, The National Institute of Mental Health, and the previous US surgeon general. It is the gold standard for reducing the many challenges that children and adults with autism have.

Additionally, if you did simple google search or oh, I don’t know read the MN autism statute, you would know Minnesota actually covers other modalities not just ABA. Some of which do not have the lengthy control trial research ABA therapy does. So, if you want to promote developmental therapies, go for it but stop talking out of your #%&s.

You also said these agencies hire young people. This tells me again you have no idea what the hell you are saying. Do you want a 40-year-old to do direct therapy with a 4-year-old with autism? You have to be young and fast to keep up with these children. If you are older than thirty, and you are still in the autism field, you are probably a supervisor and/or have a higher degree. Direct support workers are young since this is an entry level position. Again, pls sit your privilege ass down and shut up until you understand what you are saying.

Then there was Hoffman. I know some in the Somali community like him, but I think he is a grass snake. He is charming, charismatic, learns couple of words in East African languages, comes to so many Somali events, helps couple of Somali non-profit agencies with grants and can kiss-ass like no other. Deep down, he is a polished George Wallace. I have known Hoffman from the beginning before any Somali knew or even heard of him. He was yuk back then and he is still yuk, except now he is a chair and powerful. He knows exactly what he is doing and can sell a drowning person water. He called Arc to talk about autism. Why? they are not a provider nor suffered like the Somali community has. They do not have any Somali in their board and never hired a Somali in a policy position. Steve Larson was probably the last decent human being there. Andrea something is another polished liberal who will screw with communities of color faster than a NY minute. Yuk and yuk.

Will the Somali community get and understand Hoffman? Nope. At least not anytime soon. Any white person who smiles at us, we melt like a teenage girl with a hormone driven crush. So, what now? You know how Trump said – drill baby drill. I think for us it is cry baby cry. I cried today then cursed then cried again during this yucky committee hearing.

On the GOP side, the co-chair is Rasmusson. I have actually never heard of him. He seems young and not experienced. I cannot judge him yet. Usually, if a republican does not like or want whatever issue you are pushing, they will tell you right away. They are not charming or charismatic. What you see is what you get. To me, on the first impression, he seems articulate but inexperienced. I guess my question is why the GOP leadership even picked him over Abeler. I mean Abeler knows human services better than most, including Hoffman and even DHS. Abeler is the woman version of Berglin. He is clever, intelligent, and quick on his feet. He knows human services policy better than most. Oh, and he was the original legislator who helped the Somali community and all autism Medicaid families in covering autism therapy. He was the first legislator with a backbone who actually asked better oversight in autism therapy back in 2011. That is over a decade ago and Minnesota still sucks. Ufta and ugh. What the heck?

Gentle friendly advice to the two Somali Senators in MN Human Services Committee: 

1. Anytime, the committee is talking about autism, please make sure the agenda has actual Somali autism parents, professionals, and advocates. There are four Somali autism advocacy agencies now. There are many licensed Somali professionals and providers who do the right thing and have helped children who have not been helped before.
2. Ask and question everyone about everything, especially DHS and other speakers about not just autism oversight but how they oversee other programs.
3. Ask about oversight in home safety modifications also called environmental accessibility adaptation. There is zero oversight nor audit and it is still Medicaid funding. The only difference is those agencies are almost 100% white men. This is why DHS and legislators never mention them. I beg you ask DHS how they provide oversight for those blood sucking white contractors who charge an arm and a leg and have no one asking them for quality services or outcome. DHS does not even have a good policy on this. Counties just wing it.
4. My favorite – ask about the real blood sucking greedy managed care organizations who are paid before they provide zero services to zero patients. How is that even a law? It is like paying an employee for work they have not done and may never do. Who does that? Minn DHS. The MCOs are paid in advance, are almost never audited, DHS has no idea how much money they got, how much they spent on patient care and how many patients they served. They are just sent a fixed amount for every low-income patient on medical assistance whether they receive medical services or not. Why is that not waste and fraud? The OLA is underfunded and understaffed to even do the federal single audit act consistently on DHS and MCOs. Why aren’t the legislators having a meltdown about that?

To the Somali autism families and community: 

While I have so much love and respect for you, I am profoundly disappointed. I have offered to train you in policy. You can also learn on your own by just searching and googling. Some of you even said to me today – Idil, you told us about his committee hearing late. What now? I told you when the committee posted. This tells me despite me preaching to learn and understand autism policies, so many of you are still in the dark. I always hear, I am busy, I have to do this, that and the other. Then you cannot complain when they have us for lunch by breakfast. If you are not on the table, then you are on the menu. So many of you have benefited from the many autism policies I have worked my ass off and advocated sometimes day and night. Sometimes you have to do it for your fellow Somali autism families. Sometimes you have to do it for the children behind yours. Sometimes you have to do it for your community. Best of all, you have to do it for your soul and heart. If I had said what so many of you say – imagine what services your child would’ve had now. Policy advocacy is arduous work, the reward of setting the system for your child and others is priceless. Please wake up and learn about autism policy. You are so talented; I know you can do it.

To the Somali autism agencies: 

1. You are benefiting from our long and hard advocacy work, why are you not defending yourself and your work now?
2. Some of you are licensed therapists who are educated and know about this, but you are sleeping. Why?
3. You can create an association, hire a lobbyist, lawyer, and publicist to get your good work and message out. Why are taking a nap at the wheel? I am mostly disappointed in you. Autism is not a business; it is about human beings who are vulnerable. If you are not going to defend and help autism families then please leave and maybe sell shoes or ice cream.

To the Somali community: 

1. Where the heck are the mosques? You scream when some country in the middle east is in crises but silent about autism. Why?
2. Must we always be bridesmaids and never the bride?
3. You are constantly at Mpls airport welcoming some “xil-dhibaan” from somewhere else when your home is crying for help. What the heck?
4. Our children are either autistic, dying from drug overdose or failing in school and you are interested in what some crappy politician from Somalia is saying. Are you bleeping kidding me? Where are your priorities?
5. We have learn to live and assimilate into this beautiful country that provided us life. Yes, we are Somalis, but we are also Americans. We must learn to live and not just exist in this country.
6. The mosques do not welcome our autism children even during Eid. How hurtful? What happened to our leaders? This silence from you hurts me the most. I cry as I write this blog because I thought we were – dad fiican oo dhiig iyo laf dhabar leh.

I guess this will do it for this blog. As I try to retire, someone else has to understand and advocate about autism policies. Come on community.

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

Idil Abdull – Somali Autism Mom & retired advocate

Alright – so, a long time ago – Malcolm X called people who thought they were a different race and kissed you know where – house negro. Today, the term is modernized. It is called Oreo – black on the outside meaning their skin color and thinks white on the inside meaning totally confused. For the brown people, today’s term is twinkie – brown on the outside meaning their skin color and thinks white on the inside, also totally confused.

I remember a decade ago or so when I was in the middle of autism advocacy or even earlier starting out, there would be no one who looked like me, nada. No Black or brown person, other than me, was present in the conference committee (Rep. Hayden was also there) when autism being covered by Medicaid passed in 2013. I remember after it was voted, I came outside of the MN State Capitol building and sat on the stairs crying and thinking – only if there were more legislators who looked like me, more committee administrators, more legislative assistants, more lobbyists and just more people who reflected our black and brown communities. Only if there were more Black and brown people in charge or in a leadership position at the health, education, and human services departments.

Well – fast forward to now, there are plenty. Sadly, and frustratingly, so many of them are Oreo and twinkie. Many are in a leadership position at all levels of state government, legislators, even reporters. So why does it still feel lonely? There are even Somali autism advocacy agencies now. Yet, it feels sooo lonely to keep advocating for autism policy and fairness. Why? Why and more why?

I am emotional about this. I feel sad, hurt, used, tired, overwhelmed, and frustrated. What is the point of having sooooo many of you if you are confused on what lane you should be fighting for?

Some may say, well – Idil, we advocate differently and nicer. Ok, I can buy that, but where are your policy seeds and fruits that you have advocated for and/or about in autism?

Somali autism gets picked on by heartless DHS Commissioner Harptsead and we take a nap.

Somali autism is ignored by the health department despite being 1 in 16, the highest in any community, and we are sleeping.

Somali autism issues are dismissed and disregarded by One Minn Hoax Governor Walz, and we are happy because he likes sanbusa or is a social media friend.

Where are the Somali community leaders?

Where are the Somali Mosques?

Where are the Somali autism advocacy agencies?

Where are you all?

The good old days of Dr. Saeed Fahia, Mohamed Jibrel, Hussein Samatar, and Abdirahman flight 13 are gone. We are left with a bunch of ass-kissers, know nothing about leaving a legacy, spineless and yuks as leaders. For that I am profoundly disappointed and hurt.

To be an autism policy advocate, you must be ok with rocking the boat, pissing the oppressor off, and disrupting the status quo because the long-term benefit for our children outweighs. It takes guts, courage, tenacity, but most of all compassion. Unfiltered and pure compassion for children with autism. I simply do not see that from our community right now. You can get mad at me if you want but as they say – the proof of my work is in the pudding, I stayed on the road when it needed to meet the rubber. My goal was not to be liked or be a BFF with anyone, it was simply for my son with autism and other black/brown children with autism with no hesitation and no reservation – full stop and period.

The above words do not represent any candidate, agency, or committee.

Idil Abdull – Somali Autism Mom & Retired Advocate

Alright – so, if you follow any autism policy or my blog then you know that Dr. Larsson whom I think is arguably the most racist and arrogant SOB psychologist and runs Lovaas autism center and Minnesota Department of Human Services’ EIDBI clinical lead Nicole Berning have been colluding and meeting for months to strategize how to close, shame and shut down Somali owned EIDBI centers.

Now, one would say what the heck? Well – let’s dissect it. Nicole used to work for Lovaas/Eric Larsson. She thinks highly of him. She wants to open her own EIDBI center and has been pushing the board certification for behavior analysts. Guess who wrote that legislation with Lovaas/Larsson – drum roll please ….wait for it…..Rep. Kim Hicks who was the policy person for EIDBI and you guessed it, Nicole Berning. How do you like them apples. It gets better and more collusion happens.

1. They (Nicole and Kim) meet with Larsson while getting paid under DHS. What now, aren’t state employees supposed to stay neutral. Yep, except if you are white privileged white woman.
2. They also meet with Lovaas/Larsson during their off time – according to Hicks. Why the heck is Hicks even doing double job, a state legislator from Jan to May then a DHS/EIDBI employee from June to Dec. Ahhh, it must be nice to be soooo privileged and have no none hold you accountable including the village idiot assistant commissioner at DHS – Merz.
3. Nicole and Kim draft the language for the licensure even though that is ….what is that called – unethical at best and illegal at worst. No one at DHS gives a flying hoot about it. Not yet anyway.
4. Then according to some Somalis at these exclusive meetings that Nicole organized, Larsson goes after and trashes Somali EIDBI agencies and its owners. How lovely and so righteous of him. This is the guy who discriminated against young children with autism including my son.
5. He claims they do not know what they are doing, they hire young people. What the heck. Excuse me – Mr. righteous, when my son was going to your ABA agency, all your behavior therapists were between the ages of eighteen to probably early twenties. Of course, when you do it (asshole) it is fine, when a Somali does it – ooohhhh fraud. How original.
6. Larsson/Lovaas along with Nicole talk about how Somali EIDBI centers are stealing and wasting Medicaid funds. What now? Excuse me (asshole) you stole $2,862,769.00. Ain’t that the pot calling the kettle black.
7. Nicole is a state employee and should never be attending or colluding with anyone let alone a known racist piece of shit like Larsson/Lovaas (not a typo).
8. When Larsson/Lovaas stole and committed Medicaid fraud, what did DHS do? just you wait, you will like it…drum roll pls….They negotiated with him, forgave most of the money, did not shut him down, did not report him for investigation, did not contact the media and let him continue as though nothing happened. Yes, siree bob. 
9. Now, DHS is led by Commissioner Heartless Harpstead who was hired by Gov Walz who has been elected by most of Minnesotans including many Somalis. How do you like them apples. When will we learn to vote wiser.
10. About two years ago, Somali Autism Advocacy agencies went to DHS EIDBI manager – Mr. Flint asking to partner with them and train both Somali EIDBI providers and families. They told him “We do not want our children with autism to become collateral damage as the kids in the daycares did. Let us help you and provide training on EIDBI as so many in the Somali community do not understand this.” He refused to partner and stated “DHS did not have money”. But they have money to go after the Somali EIDBI agencies. Can real racism please stand up.
11. Behavior Dimension stole Medicaid funds to the tune of $2,772,517.00. What did DHS do? Made deals with them, did not shame them, did not report them to the media or the federal government. Instead, they treated owners Jay O’Neill and Nancy Schussler as friends, not a foe. DHS ensured, their business continued without interruption and shame. Please tell me that is not pure and blatant discrimination.
12. Lazarus Project provides ABA therapy was started by a group of white autism parents, stole Medicaid funds to the tune of $369,979.00. Guess what happened to them. Nada, they hired a lawyer from Byron and Fredrickson and like magic, they paid not even pennies on the dollar of what they owed. If you do not know who Byron and Fredrickson is, please stop living under a rock. I can write a book about them.
13. When Larsson, Schussler, and O’Neill steal millions in Medicaid funds, nothing happens to them, and it does not become a lighting news story. When a Somali is alleged, not even convicted, or proven, it is the news in every outlet from corner to corner. Everyone is having a meltdown and wants to shame the whole community. I thought it was innocent until proven guilty, nope, if you are Somali and/or any other minority.
14. My suggestion to the chairs of senate and house human services committees which now are four since the house is 67 DFL and 67 GOP, need to request data from back a decade ago to make the case of when a white provider steals millions in Medicaid, and compare it to whatever they are accusing of the Somalis now. Fairness must prevail.

As a Somali Autism Mom who sued racist SOB Larsson/Lovaas when he discriminated against my son in federal court, I am heartbroken by this. I am mad, sad, frustrated and most of all disappointed in our community and our elected officials who never seem to have a backbone.

Ok, let’s assume there are few Somali EIDBI centers who have done wrong, must the bias media label all the Somali community thieves. Must we be traumatized again. Why can’t the Somali legislators whose job is to protect and serve their constituents ask DHS Commissioner Heartless Harpstead, Nicole and Kim the following:

1. How did these alleged autism centers get approved?
2. Who the heck gave them authorization?
3. Don’t you have mechanism to ensure accurate billing and reporting?
4. If the statute says autism and related conditions, what are the related conditions? who diagnoses the child with that? how come they are not under fire?
5. Why isn’t DHS not doing training and oversight to ensure quality of services for the child/family?
6. Why is DHS blind and deaf to the board certified behavior analysts who are essentially robbing these Somali agencies blind? I thought the almighty BACB board had ethical guidelines, or is that a front?
7. Why haven’t you reported or even took the money white autism centers/agencies stole since you are hot and heavy against the alleged Somali autism centers?
8. Who the heck holds you at DHS accountable for your intentional negligence and disregard for fairness?

The Somali elected officials need to get a backbone and ensure fairness prevails. 

The law for the state of Minnesota to pay for autism therapy passed in the state legislator on a rainy Thursday night on May 16, 2013. Can you imagine, I was the only person of any color/race/ethnicity left in the conference committee room that night when the autism Medicaid waiver 1915i added by Gov. Dayton was finally added to the final omnibus bill. Then we advocated at the federal government to cover autism therapy which they allowed on July 14, 2014, If you only want to hear the EIDBI part, go/click to Medicaid coverage section which I think is slide 16. Minnesota then changed its autism waiver to a state plan amendment which was approved by CMS on March 2015. I have been in every step of this process from day one to the last day it got approved. I along with other Somali autism parents have worked sooo hard to ensure the language of the legislation and the amendment were person-centered and culturally responsive. We made sure the family training component and rights/responsibilities were a big element, and to see all our hard work talked about negatively has been excruciatingly painful for me and other autism parents. It is more painful for our elected officials to do nothing and not hold DHS accountable for its double standards again.

When does justice prevail and stand tall. When?

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

Idil Abdull – Somali Autism Mom & Retired Advocate

Alright – so, it has been an extremely sad and heartbreaking year for our Somali autism community. Children with autism have been hurt and died due to eloping/wandering and not knowing how to swim.

Research tells us children with autism are 160 times more likely to die from drowning. Water often gives children with autism a calming sensory need. Research also suggests swimming the first service the child gets after the diagnoses, even before speech and behavior interventions.

So, what does this all mean for Somali autism families and all autism families. Well – lock your doors and windows if you have a child with autism who does not have safety skills. You can contact the county, school, etc. later. Even if your landlord initially tells you no, do not listen, just buy double sided locks with codes, keys, etc. They even have locks with fingerprinting and face recognition now. You can deal with landlord and county matters later. The first and most important thing we need to do is keep our children safe.

Second, search for adaptive swimming lessons in your area. Remember, learning how to swim can take a long time for children with autism. You have to be consistent with this and stay on it.

Third, now that your child is safe. Call any of the Somali or other autism advocacy agencies in Minnesota. They are SPAN, MAAN, Maangaar Global and Maangaar Voices. Ask them to help you understand the rules and policies for getting a waiver that can help you to pay for the adaptive swimming lessons and safely modify your home. There is also a federal law that most landlords must follow that protects people with disabilities by requiring reasonable accommodations and fair housing act. Ask the advocacy agency to help you understand your rights and responsibilities.

Legal authority for Minnesota’s home and vehicle safety modification. Please read and/or ask someone to help you understand.

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

Idil Abdull – Somali Autism Mom & Retired Advocate

Alright – so, the federal autism legislation, Autism Collaboration Accountability Research Education and Support (Autism Cares Act) is up for reauthorization. It was voted in the House 402 – 13. Rep. Smith a GOP from NJ and Rep. Doyle from PA as usual have been pushing and took it to the finish line before the act expired end of Sept, 2024.

I have met both Doyle and Smith when I was in IACC and spoken with their health policy adviser the last two reauthorization cycles when we were able to get all MN congress folks to vote for it. It had a hearing in the Senate HELP committee and I noticed Sen. Tina Smith was silent even when the Senator from NM was visibly emotional. How lovely, I am sure Sen. Tina Smith will come to collect Somali votes next election cycle and as the village idiots we are, we will forget and only remember she said “iska waran” or ate one sanbusa. Ugh, so frustrating.

At any rate, I cannot write about this legislation again as I have extensively done it before. In a nutshell, it supports the ADDM from CDC, NIH’s autism research, Lend programs from HRSA, IACC and so many other amazing autism work.

I do know that coalition of severe autism groups wrote letters to the authors asking changes which included elimination of IACC. I do not agree with this but did not write about it or contacted anyone to advocate as I am trying to retire. Although I miss advocating at the federal level. Believe it or not, it was a lot easier and more welcoming than advocating in Minnesota. Sadly, I still do not see another Somali Autism Parent who wants to carry the mantel and the struggle. God Willing – it will happen.

I suggest people read this entire legislation, its history and who voted for it and against it then vote wisely and let’s use our votes to support autism families.

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

Idil – Somali Autism Mom & Retired Advocate.