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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.

Alright – so, in full disclusure, I like Jamie so I may be a little bias. Why would I ever like anyone in the current DHS? Well – Jamie has been here for a long time. She is down to earth, humble, approachable and did I say approachable – that is the opposite of so many in the current EIDBI team.

Anyway, what the heck is revalidation? she explained to put it simply – simple. What DHS and simple, am I drunk. No, I do not drink. Not yet, kidding – I am  not allowed to drink.

Jamie said revalidating is making sure the information the state has is correct, and is required by the Obama care (42 CFR Part 455). It is simply to revalidate the agency to ensure we are all following the rules as required by law. I am all for this. The ultimate goal should always be the health and safety of children with autism and their families. So what happens in this revalidation?

1. This happens every five years, this includes EIDBI.
2. The agency pays the same initial application fee
3. The agency re-enters the information for all of their staff and provide documentation.
4. Site visit happens by DHS and it can be different than the original site visits since there are now records and more documentation for at least five years.
5. The agency is sent a revalidation letter that it needs to comply by in 30 days.
6. If the agency fails to respond within 30 days, DHS gives additional 30 days.
7. If the agency does not respond after the 2nd 30 days, then DHS a termination letter is sent and the agency has to re-enroll again.
8. Jamie said no agency has ever failed the revalidation process. DHS has no desire to stop agencies to provide therapy to children and families. She is soooo good and preaches right! DHS not threatening us – I am confused, it is not the norm from the current EIDBI trainings.
9. Jamie said no agency has ever submitted everything accurately. Only one agency ever submitted their revalidation with one minor issue. Wow, I guess we are all confused.
10. If the agency has questions, call the provider call center and they will open a case for the agency with a number. DHS has 3-5 days to call the agency and help them with their questions and/or concerns. She is sooooo good in how humble she trains and talks. Yum yum.
11. Jamie said agencies must have documentation to support every claim they did.
12. Jamie said DHS’ SIRS can do off-cycle site visits outside of the revalidation timeframe. I like this part because this ensures agencies are doing what they are supposed to do for children with autism and their families.
13. We need training on MPSE – Jamie said MPSE is not friendly until it is. Ugh, it is soooo unfriendly now. I am confused by it. Maybe with practice, people will get it. Adult learners have a harder time learning – preach girl! who said we age like fine wine, more like a car – depreciate.
14. Jamie gave people time to ask questions and time for her to answer them!
15. And, Jamie thanked people. What now? she did not make us feel like she was doing us a favor. Sooooo refreshing and different from previous EIDBI trainings.
16. Once the revalidation is completed and approved by DHS.

She also said if DHS does not audit or do what is supposed to do – they get audited by the office legislative auditor and/or PERM. Jamie said DHS can have consequences from these audits if it fails something. What now? DHS is held accountable, really? Ok, I am kidding – DHS is audited but usually it is not much off their bone. They don’t even feel it.

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, I am totally retired now. If you understand the system in how state agencies are supposed to work in Minnesota for Autism, then you know that Minnesota Department of Health (MDH) is the agency that is supposed to provide information to autism families or anyone who has a child with special needs. They get federal funds from Health Resources Services Administration (HRSA) to do this.

Years ago, I and others in the Somali community (Hassan and Anab) have advocated with HRSA to hold MDH accountable. MDH hired a Somali (Asli) to help autism families and provided small grants to support this effort. But just like anything else in this state of 10,000 racial disparities, if you are not constantly asking for fairness, the oppressor forgets and pretends the problems do not exist. I think Asli retired. The people I have advocated with at HRSA Diane and Denise have also retired. I have now retired and MDH is missing in action as usual.

Ugh, this is soooooo frustrating. When will Minnesota state agencies simply do what they are supposed and get funded to do for minority autism families without us having a meltdown and constantly advocating.

There are at least three Somali autism advocacy agencies, but it will take time for them to digest all of the ways to advocate. I am cofident they will get it and start going back to the do nothing about autsim agency MDH to do its job and give families the information they need.

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, I have technically and hopefully in reality retired from advocacy. I have had a chance to reflect how I and soooo many other Somali autism parents and Somali community did this and what we actually did.

First, to advocate is to change whatever the status quo is. This means people who are benefiting from the current situation are not going to be happy. Why should they? They are most likely enjoying and reaping the benefits of the current status.

Our response was – boo hoo and cry me a river. You do not have to like us, but we will advocate to change laws and policies; we will elect people who look like us and we will ensure your bias creating rules and policies are deleted and amended. If you do not like us – take a number.

Second, what happens next is they will undermine you, call you names like angry, ranting, yelling, unreasonable, difficult, so on and so forth.

Our response, the more they called us or even called me personally ranting, angry yada yada – I knew I touched a nerve. We let this useless side show be just that – useless side show. We kept going and stayed focused on our goals.

Third, then the oppressor or those benefiting from the current situation will say – ok then if you are not going to stop ranting and raving, we will tune you out. We just won’t listen to you. This is my favorite one. Yep!

Our response: If you work at a private company maybe like your own shoe store or an ice cream shop then go ahead and ignore me. I am fairly certain I will not be in your shop. But if you work in a public state agency or are an elected official, then consider us your permanent hemorrhoids.

Fourth one is they will get people who look like you to oppose you. This is called divide and conquer. This is classic move for the oppressor and is how this country benefited from free Black labor by creating house negro vs field negro. This is also how Africa is the poorest continent even though it is showered with abundance resources. They always find the village idiot cousin to go against you.

Our response: This is a hard one to fight because you do not want to picker with your own people, which is exactly what they want. What we did was say and do nothing, just show them what we were doing and why. I remember, one time Rep. Norton brought Somali autism parents to testify against us. Lovaas – the racist SOB also knows this tactic. We just stayed focused and eventually most of those folks saw what we were doing and realized they were being used. There will always be one or two that kisses ass. You just have to pray for those.

Fifth, they will undermine your work and what you are doing. They will never give credit where credit is due. They will even try to take the credit for your work.

Our response: We knew we were doing all of this for our children and community, which was satisfying. I for one do not need the oppressor to be grateful for rocking their comfortable boat.

Now, if you look at the history of this county and minorities, our issue is tiny in comparison. The oppressors here owned people as though they were furniture. Then they created laws to free people in parallel to laws that ensured minorities were never successful. For example, you are free but own nothing, have no education, cannot vote if you cannot read and cannot read because we make sure you never learn or get educated – so on and so forth. If you look at the history of anyone who fought for equality and equity, the oppressor always undermined them, called them names, etc. What and how we have been treated by so many state agency employees and leaders is sadly nothing new.

So, what did I and so many in our community do about these, see our responses above.

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

Idil – Somali Autism Mom & Retired Advocate

Idil Abdull

Somali Autism Mom & Retired Advocate

8.29.23

     Re: Public Comments on Early Intensive Behavior & Developmental Intervention (EIDBI) proposed changes

Dear Madam/Sir at CMS:

I write to you to support these changes (level 1 and level two changes) but have great and grave concerns in how the state Medicaid agency (DHS) is proposing changes. Even though this is a publicly funded program that is intended to help children with autism and their families, DHS has been silencing parents and providers for the past few months even more than usual.

I have the following comments and concerns and appreciate CMS for always looking at any proposed DHS changes with a grain of salt. Never assume what DHS is telling you is actually a fact. Always verify and confirm with objective subjects.

1. DHS did not come to the public with these changes. I have asked many autism families and providers; no one knew about this except select few that agree with DHS. As you know, I have relentlessly advocated for this benefit, I am an autism mom and provider and I had no idea. DHS came up with these changes without input from us.
2. These changes are not bad, but needed parents and providers input since it affects us the most. Additionally, we would’ve suggested to have the level one therapist to have 4,000 hours of working children with autism and/or related conditions and speak another language. As you know, autism is high in our children and if the goal is to have therapists who reflect the communities they serve then this would make sense.
3. Sadly, DHS’ goal is to silence us if we do not agree with them or question their tactics. I cannot imagine any public funds with such elite and discriminatory policies. DHS does not have to like autism families or our questions, but they must answer if our questions relate to the EIDBI benefit.
4. They have been giving one hour so called “training” to EIDBI providers who are mostly minorities. The trainings are given by a non-minority person (Ms. Berning) who has zero clue about cultural responsiveness or person-centered services.
5. Even though EIDBI has developmental therapy component that was very important to CMS particularly Ms. Harris as she so eloquently stated in the Inter Agency Autism Coordinating (IACC) committee a decade ago, DHS has refused to hire a clinical person for the other modalities (ESDM, Play Project, Floortime, DRI, and ESI). They only have one clinical lead who is not certified nor has experience in any of the developmental modalities. I think this is neglect and dismissive to providers and families interested in these important and research based developmental modalities that CMS approved.
6. DHS has informed me that they will mute the public during these one-hour trainings which will ensure no one asks them any questions, has any comments or can ever disagree with them. How is that behavior allowed in a program that is publicly funded and advocated by minority autism parents. Additionally, DHS stated they will answer questions from autism families and providers at their “discretion” This is how disparities happen when discretion becomes the norm. I ask CMS to please intervene. DHS should have no right to dismiss, disregard or discriminate against any autism family or providers at their “discretion”.
7. They have refused to train minority EIDBI providers properly in a manner that is comprehensive and uses culturally responsive methods. I have received complaints from minority owned EIDBI providers that they don’t understand policies and billing procedures. When I ask them to contact DHS, most if not all, have told me they are afraid of DHS. I can understand this since DHS notoriously bullies and intimidates minority providers particularly Black ones.
8. The majority of minority EIDBI providers are afraid of DHS closing their agencies. This is justified as DHS has closed many minority providers is public knowledge.
9. Many EIDBI families especially in the Somali community believe DHS approves minority EIDBI providers as bait and is trying to go after them.
10. DHS has refused to come to minority communities and train us about EIDBI services in a manner that is person-centered and culturally responsive. From what I can tell during the past few years, they have come to the Somali community maybe once or twice. The last time was this month, many parents reported to me their policy lead – Ms. Hicks refused to answer questions initially until she finished her power point then stated the microphone is broken. They did not bring an interpreter to translate the information even though the civil rights act of 1964 requires it. I heard from Somali autism parents who questioned these blatant racist tactics and were more confused after the meeting ended. Many felt ignored and dismissed by Ms. Hicks, who is DHS EIDBI policy lead.
11. Even though, majority of children with autism being served under EIDBI are black and brown, DHS refuses to hire someone who looks like us in either the clinical or policy area. This is like a man teaching a mother how to give birth. It simply has not and will never work.
12. When I complained to DHS’ EIDBI manager – Mr. Flint about this, I was told I was ranting and angry. Gee, I wonder where I heard that before, a black woman being called angry and ranting, how original.
13. I sincerely ask CMS to intervene and question DHS how they are ensuring black and brown autism families are getting information about EIDBI services as well as how DHS is training minority providers. What and how DHS is currently behaving is shameful, wrong and at best bias and at worst racist.
14. DHS often claims and uses their closed to the public “advisory council” for justifying the public was aware. This council does not hear from the public, the public is not allowed to talk with them, and they are completely controlled by DHS.

Here is what DHS is proposing to change within EIDBI without any input from the public, objective and non-controlled public that is – including autism families, providers and advocates.

https://www.dhs.state.mn.us/main/idcplg?IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=MNDHS-063673

Date: Aug. 2, 2023
To: Early Intensive Developmental and Behavioral Intervention (EIDBI) providers, people with autism spectrum disorder (ASD) or related conditions who receive EIDBI services and other interested parties
From: DHS Disability Services Division
Purpose: To announce a 30-day public comment period on proposed changes to the EIDBI benefit
Comment period begins: 8 a.m. on Wednesday, Aug. 2, 2023
Comment period ends: 4 p.m. on Friday, Sept. 1, 2023
Contact: DSD.PublicComments@state.mn.us

DHS seeks public comments for proposed EIDBI changes

DHS is hosting a 30-day public comment period about proposed policy and procedure changes to the EIDBI benefit. We would like to receive input about the changes from:

• People who receive EIDBI services
• Family members of people who receive EIDBI services
• Service providers
• Any other interested parties.

Legislative changes

DHS will enact legislative changes that passed in the 2023 session, which include:

• Rate increases of 14.99% for EIDBI services (effective Sunday, Dec. 31, 2023, or upon federal approval, whichever is later)
• Provider qualification changes to ensure Native American providers can enroll as level II providers.

To review the complete legislation, refer to Minn. Laws 2023, Ch. 61.

Proposed variance changes

DHS proposes to add two provider variances to continue to address the direct care workforce shortage. For more information on the workforce shortage, refer to DHS – The direct care workforce shortage in Minnesota and DHS – Building EIDBI provider capacity.

Proposed level I variance

DHS proposes the following level I variance to help account for experience within EIDBI provider agencies. This variance recognizes the value of clinical experience and accounts for the barriers to advanced education, such as cost, time and other commitments.

To qualify for the variance, the level I provider must meet all the following requirements:

• Be employed by an EIDBI provider agency.
• Have at least 6,000 hours of clinical experience providing early intervention services in the treatment modality the EIDBI provider agency uses (refer to EIDBI – Treatment modalities).
• Have a bachelor’s degree in a related field.
• Complete the required training for level III providers on EIDBI – Individual provider trainings.

For existing policy information about level I providers, refer to EIDBI – Level I provider qualifications, roles and responsibilities.

Proposed level II variance

DHS proposes the following level II variance to help expand the workforce of EIDBI providers to meet the growing need.

To qualify for the variance, the level II provider must meet all the following requirements:

• Be employed by an EIDBI provider agency.
• Be age 18 or older.
• Complete initial certification in the treatment modality the EIDBI provider agency uses (refer to EIDBI – Treatment modalities).
• Complete the required training for level III providers on EIDBI – Individual provider trainings.
• Receive observation and direction from an advanced certification provider at least once per week until meeting 1,000 hours of supervised clinical experience.

For existing policy information about level II providers, refer to EIDBI – Level II provider qualifications, roles and responsibilities.

DHS submitted these variance proposals to the federal Centers for Medicare & Medicaid Services in accordance with Minn. Stat. §256B.0949 subd.17.

Additional information

The drafted state plan amendment for review includes the legislative changes and the proposed variance changes. For more information, refer to 23-17 draft (PDF) on DHS – Minnesota’s Medicaid (Title XIX) and CHIP (Title XXI) state plans.

Process to submit comments

Email comments to DSD.PublicComments@state.mn.us no later than 4 p.m. on Friday, Sept. 1, 2023.

Additional input

In addition to the public comment period, DHS will consult with the EIDBI advisory group, providers, parents/guardians and other interested parties before making these proposed changes. (Note: this is incorrect, DHS did NOT consult with everyone, maybe select group that they can control or will agree with them; they did not attempt to reach out to a larger audience and public members). Ask them to prove it and provide facts).

As always, I thank you for your time and unapologetic support for all children with autism and their families. EIDBI would not be possible without so many wonderful people at CMS. We are eternally grateful to you. Sadly, we need your help again with DHS.

Sincerely,

Idil Abdull – Somali Autism Mom & retired advocate

Alright – so, today the state Medicaid agency (DHS) did person-centered training to families, providers and others who were interested. It was given by their clinical lead – Ms. Berning. She is a BCBA and did credit education units for her BACB board. One bears the question: what the heck does CEU for BCBAs have to do with providing training of any kind in a Medicaid funded program?

The goals should be doing training and not taking time that we quite frankly do not have. Why is the state Medicaid agency allowing this, particularly the supervisor there – Mr. Flint? Why would he not ensure EIDBI concentrate on using time wisely and not worry about what the BACB needs or does not need. Further, EIDBI also has developmental components and I do not see CEU for other modalities – it is all about BCBAs. Remember Marcia, Marcia, Marcia from the Brady Bunch. Ugh. These people irritate me to my core.

She did sooooooo many things wrong from the get-go….

1. If I have time, I will answer your questions. Then she said the family is in the driver seat. This is the seat that is getting silenced by her and her protector – Mr. Flint. How is that for oxymoron?
2. Then she talked about working on things the family wants to work on – what now? Have families be at the center of their child’s treatment’s first step is listening to families and not silencing them because you do not like our questions.
3. She did not mention where the skills of the child/family are at. No surprise there.
4. They need to record these trainings that are drive through.
5. As usual with DHS EIDBI, it is in dictatorship mode – we were muted and our cameras off. Saudi Arabia, Mussolini and Idi Amin combined had more freedom than DHS EIDBI’s one hour drive through trainings. Why are our faces hidden, and voices silenced in a publicly funded program?
6. She did not explain what the heck person-centered is, the research behind it and how all behaviors are embedded in the person’s culture. I for one would like to know more about the origin and history of person-centered and why it is important in autism therapy.
7. As usual, she sounded nervous, although today she did not repeat herself 100 times, that was refreshing and time saving. Cry me a river – protector, Mr. Flint when God forbid, we have feedback for your staff.
8. Oh and – how do families whose first language is not English even understand this drive thru one-hour training? Your guess is as good as mine. Yay, this is why we stayed up late at night in the state capital for years advocating for EIDBI, lovely!
9. She forgot to mention the CMDE – you know the father/mother of the ITP must be used when developing the ITP. In other words, we have to make sure the CMDE is written with the child/family in the driver seat.
10. She forgot to mention – sometimes, maybe often in minority and low-income families that have zero county and/or are struggling with schools and that is what they need first. EIDBI is NOT just about ABA and trials. It is about helping and supporting the WHOLE family. Why would a privileged white woman ever understand that though? Ugh.
11. She finally did say be aware of subjective biases and how we avoid assumptions and judgements. Ahhh, what now? Isn’t that what she and her protector Mr. Flint are doing? Judging and subjective biases by silencing those of us that disagree with them or have different ideas and comments. You cannot even make this sh…t up. She is preaching the opposite of what they practice.
12. Hey DHS EIDBI, have you listened and compared your words to your actions?  – Classic oxymoron.
13. When she was talking about individual goals/targets like operationally defining behaviors; meltdown vs looked away, etc., unlike them I give credit when it is due – she was in her territory and made sense. Hey DHS, learn to share credit and give people when they do good or accomplish something even if you do not like them. That is called being a reasonable adult and not a toddler having a meltdown – pun intended. I dare you to give minority autism families especially the Somali community credit for the incredible work we have done in EIDBI in Minnesota and nationwide. I dare you. Lunch on me for a week if you learn that life important skill.
14. Oh wait, she is mentioning making referrals to other providers. This is good. Remember the days when ABA providers would never refer. In fact, they would discharge us if we dared went to speech, school, OT etc. Good ol days! not really.
15. Data collection – her domain. She sounds like she knows this area. Giving credit when it is due. Lesson for DHS to learn, not holding my breath.
16. When explaining executive functioning skills – not bad, Ms. Berning. I only wish you were good at people skills and did not always hide behind these white men at DHS that seem to protect you at every corner even when you are wrong. Before it was Mr. Nord and now it is the new hero Mr. Flint. Just lovely, we aren’t all as lucky as Karens – privileged and entitled. Ugh.
17. Expressing their frustrations – is this for the child and family? Oh oh oh, I have one….I am extremely frustrated with you Ms. Berning and your new protector – Mr. Flint. But you are silencing those that disagree with you. There is a name for this…. What is it?……oh yeah the opposite of person-centered which is what she is preaching. Maybe you at DHS EIDBI practice what you preach. Ugh.
18. Why isn’t this being recorded to eliminate he/she said or my favorite names – ranting, angry…blah blah.
19. She talked about care coordination – not bad except DHS EIDBI does not practice coordinating with families that disagree with them.
20. Stop talking about the BACB code of ethics crap. A BCBA discharging my son at age five and another BCBA demanding we do 40 hours at age 12 is exactly why I became an advocate which led to EIDBI and Medicaid covering autism therapy. The notion that BACB cares about any kind of human ethics is useless, false, and not happening on the ground.
21. Denying a child a preferred item/activity – not bad how she is explaining. It is good to ensure there is a replacement behavior that has an equivalent purpose. She said think about what the child learning is – not bad. For me, it was, can I be on the phone for more than five minutes without my son having a behavior. So that goal is not just about the child but also the parents. She did not talk about family-centered goals which is part of the person-centered since the child does not live in silos; the kid is a part of family. What goals are important to families and how do we meet them? Personally, I would rather help the parents first before I get to the child. Similar to how in airlines they tell you to put your mask first then put the child’s mask. Dr. Insel – Dir of NIMH and IACC chair used to say – if families are on fire, providers have to put that down before they get to the child. In other words, writing perfect ITP goals for the kid when the family has no services, does not sleep at night, going through other things, etc. will do nothing for that child. I think we have to first ask mom/dad, etc.,. What do you need, how are you doing, do you sleep more than 5 hours a night, are you having any mental health issues that need family caregiver counseling, are you able to handle IEP meetings by yourself, what services do you get from the county? are those adequate for your family, etc. Again, a privileged white woman like Ms. Berning or her new hero protector, Mr. Flint would have no idea about these challenges. As the saying goes, I tell you from my experience and what I know, right.
22. Barriers to any goals that the child did not learn – she was good here. We should be critical of ourselves if we did not teach what we said we would teach the child and do better. In parallel, we should use the same feedback for any family goals that we did not accomplish for the family. She did not mention any family-centered goals.
23. It is 9:50am and she is still talking. I would give you feedback – give the last 15 minutes for questions and comments from your learners. This would be practicing what you are preaching. Ugh, they are becoming hemorrhoids for me now. I wonder if they hear themself. Teaching self-advocacy and hearing from families – ah, excuse me, unmute us then.
24. She is starting to repeat herself now as usual. This is when her protector should oh, I don’t know, train her and tell her to stop talking and give the floor to your students/learners in this training…Earth to Mr. Flint. I hope you are listening objectively here and can see your own errors.
25. More repeating herself —yada yada…. we got it, you said this already, it is 9:53am now. Share the floor and the time Mr. Berning.
26. She is now talking about self-auditing as an agency. I will party like it is 1999 when DHS EIDBI learns this lesson – audit yourself and take feedback without being defensive and cruel by silencing us. Practice what you preach, practice what you preach, practice what you preach.
27. Now she is telling us about a MNABA conference. Why does EIDBI and the state Medicaid agency care about ABA conferences and what the heck does that have to do with Medicaid?
28. It is now 9:57 and she asked people to put their questions into the chat. I wrote – I am from an oral society and will not write any questions, stop silencing us. Thanks, Idil. 

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

Idil – Somali Autism Mom & Trying to retire advocate.