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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: [email protected]

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 [email protected] 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.

Alright – so, if you know me, read my blog or have learned the history of Minnesota’s Early Intensive Behavior & Developmental Intervention program, then you know dealing with DHS is a rollercoaster; Minnesota weather is more consistent than them. It all depends on who is in charge. Sometimes even if the commissioner or assistant commissioners are about equity, the middle management are almost never on-board with equity, diversity and equality.

It is tiring and exhausting to keep asking the same thing year in – year out. What is the same thing – have people who reflect us train families, providers, ask those who are from diverse communities to also train like you do the uppity whites, be fair, be kind, be fair, have compassion for autism families and their children, did I say be fair? You see the fiber and core of this agency is at best bias and at worst racist. This will never change because the oppressor never wants to share power, knowledge or resources with the oppressed.

I am technically retired, but DHS’ EIDBI staff are on my last nerve in how they lately have been having two white priviledged women drive this program without any transparency or accountability. And, how those in charge of them support them with a blind eye and a deaf ear without finding out the whole truth because they cannot handle the truth.

At any rate, finally, they had Back to school support and advice training for providers and you will never guess who was silent. Wait for it….drum roll pls…….Ms. Berning, you know the overrated and always protected white woman. They finally gave the ONLY person of any color or even with a suntan in EIDBI division (Ms. Vang) the opprotunity to drive this training. It gets better they finally asked actual people of color to train us. Wait what? where they drunk? They had three Somalis (one male and two females) and I could not see their faces because they did not tell us to watch or their cameras were off, and of couse, they silenced us to ask to turn the cameras on – so there might’ve been other minorities. It was like Mozart music to my autism mom ears. I got what they said, how they said it and thier tone was as welcoming as the spring in Minnesota when all of the snowbirds come back.

It remains to be seen if they will do this again. I do know one thing. Ms. Vang knows more in her little finger than both Ms. Hicks and Ms. Berning’s heads combined. If I remember it correctly, she was:

Yingya Vang

Committee Administrator

Human Services Finance and Policy Committee

House DFL Caucus

To be a committee administrator of any committee let alone health finance and policy is being as smart Albert Einstein. You have to know how to move and think fast, how to multitask, remember the kazilian bills that go through this committee and be fair to everyone which is something Berning and Hicks struggle with. Yet, EIDBI manager – Mr. Flint does not utilize Vang’s talents and calmness. It does not matter what kind of question you ask her or your comments, she remains calm under pressure while Berning’s face gets red and annoyed and Hicks tries to silence you. Vang is a breath of fresh air who should be given the same opportunity, training and responsibilies the two white ones have been given. In fact, in my humble educated opinion, she would be better at being the policy lead instead of Hicks.

To the minorities they have given a chance to speak who are Somalis:

1. Hilib iyo cunto aan idiin soo bislaynay ayaad cunaysaan oo ku raaxasanaysaan.
2. Ha iloobina dadkii jidka idiin furay
3. Ha ogalaalina in nala kala qaybiyo
4. Caruurta Soomalida ah ee maangaarka qabta iyo reerahooda u hagar baxa or caawiya.

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, the Minnesota state legislative session for 2023 has ended on-time without any major delays or issues. The reason being the same party (dflers) were in control in all the three branches of Minnesota government – the house, senate and the governor’s office.

So, how did we (autism families) do. Not bad – not bad at all. If you read my blog or know me then you understand why I am not a big fan of the dflers, (not all of them, some) but I must say they did more than I expected this session.

The good, the bad and the downright ugly – let’s get to it.

The good – after years and years of intense advocacy from me and sooooo many other parents, advocates, experts and amazing legislator – Rep Richardson, the suspension language that we wanted passed. Minnesota school districts and charter schools are now required to use non-exclusionary methods before they suspend a child. Yay! oh, I forgot the governor’s education department also worked on it this year better than before. Their legislative person testified for it and for some reason seemed more authentic this year than previous years. This is big. This means what happened to my son on Thursday, May 3rd at 5:18pm in 2018 by teacher Kelly Morris and principal Jaysen Anderson from Bloomington school district will not happen again to another child. They would have to try non-exclusionary methods before they kick our kids out of school. What exactly are non-exclusionary methods? Ain’t that a good question. Let me copy and paste what the actual language in the final education Omnibus says:

“Non-exclusionary disciplinary policies and practices” means
policies and practices that are alternatives to dismissing a pupil from school, including but
not limited to evidence-based positive behavior interventions and supports, social and
emotional services, school-linked mental health services, counseling services, social work
services, academic screening for Title 1 services or reading interventions, and alternative
education services.

Wait it gets better….drum roll please…..

Subd. 31. 

Nonexclusionary discipline. 

(a) For grants to school districts and charter schools to provide training for school staff on non-exclusionary disciplinary practices:…

What does this mean? well, it means school districts can get grants to train their staff about non-exclusionary methods. In other words, remember how the principal’s lobbyists used to say – unfunded mandate. Guess what? it is now a bleeping funded mandate. How do you like them apples? I am super excited about this. I have been at it since my kid was suspended.

There is more……Rep Richardson’s bill of NOT suspending students from Kinder-garden to 3rd grade also passed. Oh my goodness, yum and yum. There is even more, this I did not advocate but other autism parents did – school districts can no longer punish students by excluding them from recess, how cruel was that. There are lots of good laws that passed for education this year and best of all, there were no kazilian testimonies and hearings from parents which always traumatized me because I had to remember that horrible Thursday in 2018. Here is the full bill. For those of you who may not understand how to read statutes, underlined means new law, strikethrough means deleted law and without both means current law.

So many people to thank.

1. The many many parents whose children were also suspended who have testified year after year, thanks so much!
2. EdAllies and Solutions not Suspension advocacy groups. Josh – you simply rock!
3. Rep Richardson for her laser like focus on this issue. She literally lobbied with the house and senate until the end. I soooo appreciate and thank you.

What else passed for Autism? 

Myself, Saynab, Ayaan, Fatima and Mahdi (All Somali Autism Parents) invited the five Somali state legislators via Zoom. Four showed up (Sen. Mohamed did not show up nor responded to us) – Rep. Noor, Rep. Hassan, Rep. Hussein and Sen. Fateh. We asked them the following items:

1. Somali autism grant (two million) for the Somali autism advocacy agencies (SPAN, MAAN  and SNCRC) – Rep. Noor
2. Somali autism research funding on why autism is disproportionately higher in our children – Sen. Fateh
3. Autism grant in the Housing omnibus bill – Rep. Hassan and Rep. Hussein
4. Autism/sensory friendly section in the big Cedar Riverside park project – Rep. Noor

What did they deliver: 

1. Rep. Noor – one million for high prevalence autism underserved communities. He took off the word Somali and names of the agencies who do the work. Below is the actual language: Regarding the autism/sensory friendly item – he did not confirm with us and I have not yet verified what is actually included in that final bill. Other Somali autism parents will now need to do this since I have retired!

   (n) Parent-to-Parent Programs.
   

   (1) $550,000 in fiscal year 2024 and $550,000
   in fiscal year 2025 are for grants to
   organizations that provide services to
   underserved communities with a high
   prevalence of autism spectrum disorder. This
   is a onetime appropriation and is available
   until June 30, 2025.
   

   (2) The commissioner shall give priority to
   organizations that provide culturally specific
   and culturally responsive services.

2. Rep. Hassan did not add what we asked and has not responded to our request to find out why
3. Rep Hussein did not add what we requested and has not responded to our request to find out why
4. Sen. Fateh told us in the meeting that he was interested in this idea, but it was too late into the session and would look at it next year. I suggest parents follow up with him. To those non-Somalis who assume autism is not disproportionately higher in us, please do your homework and do not stand in our way. Habar fadhida lagdini la fudud.

My take on having Somali legislators is salt and sugar. What do I mean by that?

Waa nasiib wanaag qof kuu eg oo aad luqadaada hooyo kula hadli karaysid uu xildhibaan yahay. Waxaa ka fiicnaan lahayd in ay autism dhabarka saartaan oo ay na caawiyaan. Ma aha, in aan barino ama aa daba socono. Maxaa laga dooranayay hadii misena la’sii baryayo?

Here is the final bill for Human Services. You can control f search autism to see what passed. There are other items that I did not advocate that passed which will help autism families. Parent pay has been increased, parental fee for Tefra families has been eliminated, etc. There is an autism grant for EIDBI providers. There is a rate increase for EIDBI providers; I testified against this one because I would rather we used that money to increase shortage of staff. Plus, the governor already put in his budget rate increase and licensure study. I am very happy about the licensure for EIDBI. it will ensure our children are safe and are getting quality therapy. The licensure part – I did advocate and testified for it.

What did we not get to or lost? The opting out of MCOs and modifying the wild wild west EAA and Home Safety Modifications that DHS allows and looks at it with a blind eye and a deaf ear. Ugh.

The big one is with the MCO’s. I have always said – don’t hate the player, hate the game. I along with some amazing health policy advocates have been advocating for the past couple of years a bill we called the “opt out or freedom to choose your health care”. Last year, Sen. Utke did not even give us a hearing and it died in the senate. This year, Liebling gave us a hearing, it passed her committee and was added to the House Omnibus. Wiklund gave us a hearing and it passed her committee and added to the Senate health omnibus bill. There were no issues, the governor’s office pretended to like it and stayed neutral. Then literally at the 11th hour of the conference committee meeting, the lobbyist for the big insurance companies flashed something called 340B. I still do not know what the heck that is. Apparently, HCMC cried a river and said it would hurt them, yada yada. And, so like magic our bill was yanked from the final health bill. Ugh. I blame us or me. I kind of relaxed since there were no major testifiers against it. You never wanna sleep during the conference committee or as I used to call them an African meat market (Suuqa Xoolaha). That is when they meet, bargain, and screw with anyone who is not watching them.

My advice for next year is be vigilant, get more legislators of color as co-authors, get all of the minority councils on board, get the blessing of the medical, hospital and pharmacy associations. Get whatever data you can on how MCO’s are horrible. Get providers whom they have screwed with testify for it and stay alert until it passes the final step. If you are an EIDBI provider and have been screwed by MCOs like BCBS, Ucare, and others, please support this bill. It will benefit you. If you are an autism family who has BCBS, Ucare, etc., and your child cannot get services because no provider will take you, please support this bill. You will have the choice to opt out of MCO and go straight to Medical assistance. When this bill passes, patients will have the choice to choose MA or MCO.

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

Idil – Somali Autism Mom and Retired Advocate

Alright – so, as Sen. Hoffman from Minnesota was trying to silence me in his little state committee, I was asked to speak at the federal level about autism. God does work in mysterious ways. When a tiny door like Hoffman’s closes, God opens a huge window like this.

Here is my written testimony. This is held by NIH and will be via zoom – phew as I would not want to fly to DC. It should be broadcasted on NIH’s website.

Idil Abdull – Written Comments

Adults with autism & Nonverbal/Minimally Speaking Individuals with autism

Federal Interagency Autism Coordinating Committee (IACC)

Dr. Gordon – IACC Chair and Director of the National Institute of Mental Health

Dr. Susan Daniels – Director Office of Autism Research Coordination, Executive Secretary of IACC, and Acting National Autism Coordinator, NIMH

April 4^th, 2023

Dear Mr. Chair and Members, my name is Idil Abdull; I am a Somali Autism Mom and retiring advocate. First, I want to thank Dr. Daniels for her support and guidance in the Somali autism community in Minnesota as well as all autism families across the nation.

I was lucky enough to be part of IACC almost a decade ago now, how time flies. We made a lot of progress back then and you all on the current committee have made even more progress. However, there are two areas that I believe we still need more work and support.

Let me start with adult services. My son is now twenty years old, he will be twenty-one in July of this year. There are almost no services for adults with autism in Minnesota and nationwide. Our children grow and become adults, but we as a nation are not ready for them. The system is simply not set up for adults with autism from employment to housing, to safety, and in between. One of my biggest worries is who will care for my son when I am no longer here.

I want to ask IACC members, particularly the federal agencies that oversee adult services to concentrate more on not just research, but on services and support for adults with autism. They will need housing that is person-centered and culturally responsive, and employment that is fulfilling and rewarding. They will also need to be safe in their communities including with law enforcement. We must make sure adults with autism are able to live and work safely in their communities with dignity and respect.

My second request is about the ability to communicate. As you may have heard, Somalis are an oral society. Sadly, most of our children, including my son, have nonverbal autism. In other words, autism is silencing a nation of poets who are known for their oral communication. I thank Dr. Kasari at UCLA and Dr. Helen at Boston University. We need more research into this area, particularly in teaching our kids the ability to communicate from their hearts and minds via spelling. I think PECS is fine, but those are pictures and do not give our kids the ability to communicate their true needs and wants. It is a limited system.

I ask IACC to raise awareness of the spell to communicate system, to have insurance companies and Medicaid coverage, and to ensure we are giving every individual with autism the opportunity to be able to tell and say what they want, what they need, what they are thinking and tell us their dreams.

I would give every organ in my body for my son to be able to speak orally. It is my hope that one day he will tell me his thoughts, wants, and needs. I would love to ask him and have him answer me why he likes to listen to 70’s music such as the song – ooh child, things are gonna get easier when we are in the car and Bette Midler when we are traveling out of state. You see Mr. Chair and Members, individuals with nonverbal autism are smart, funny, thoughtful, and want to live a happy, healthy, and safe life just like all of us do. I ask IACC to tackle these incredibly important issues.

With Gratitude
Idil Abdull – Somali Autism Mom & Advocate

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

Idil Abdull – Somali Autism Mom