Blog Archives

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.

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

Alright – so, where do I even start. There are thousands of appeals that go through the Minnesota Department of Human Services (DHS) appeals court annually. They have dozens of judges who decide the fate of so many vulnerable Minnesotans. We do not have to ask Jack or Jane that counties deny, dismiss and disregard autism families, especially communities of color. So, what is DHS and its judges doing about it? Nada, zilch, and nothing.

Commissioner Harpstead decided to ignore minority autism families willingly and purposefully. Under her leadership, more minority autism families have been screwed with than I can remember under any other commissioner. DHS judges are hired by DHS. They are simply lawyers who work for the agency. They are not judges who we can elect and unelect. In other words, they ultimately work for DHS and the commissioner.

I had the displeasure of listening and being dismissed rudely by a recent case. It was a child with both physical and developmental disability that Dakota County denied a developmental disability waiver. Let me explain this further; Dakota county denied a small Somali child born here who has both physical and developmental disability a waiver. Who the heck is supposed to get a waiver then? That is the million-dollar question that no one at DHS, county management, or county commissioners has been able to answer.

This parent and I went to every possible agency and/or person in a position of power and not one single person was able to help this child and family. Think about that for a minute.

We went to the Ombudsman’s office – their response was, go appeal and we can’t go with you. We went to the DHS disability division – their response, go appeal and we can’t help you. We went to the county commissioner – their response was let’s just ignore our voters. We even went to the chair of the health and human service who is a Somali in the House. We are still waiting for a response from him.

So we went to a DHS judge and appealed. First, DHS judge Raymond Wood is assigned to us. He sounded black but the liberal version of Judge Clarence Thomas, where they look like us on the outside but whiter than vanilla on the inside. Then he makes an appointment but never sends the time/date to anyone including the family nor the county. Third, without apologizing for that incompetent mistake, he makes another appointment and denies the family to have an advocate in addition to the Minn Disability Law Center person. Now, what now? yep, that is right. Denying the parent the right to have an advocate present during a hearing is person-centered and culturally responsive to a DHS black judge. How do you like them apples?

After mom keeps asking for me to enter the phone call and support her, he finally calls me and says – what is your name? I am thinking you called – you arrogant ??##@@ – I am not going to tell you my name. How about you tell me who the heck you are first. Who the heck calls someone and then says – what is your name. What world does this judge live in? la la land.

As that was not bad enough, Dakota county’s horrible and heartless gatekeeper – Mary Woodard tells lie after lie after lie. He soaks it all like a sponge. When the person from the disability law center tries to speak and ask mom questions, he immediately shuts her down and silences her. He then lets Ms. Woodard lie even more despite the fact we have emails and information that will cancel her lies. I have never seen anything like this even in law and order television show where things and stories are fake.

Ladies and gentlemen, this is what it is like to be a white woman. Ms.Woodard denies this child a waiver or another assessment. DHS allows this kind of behavior in publicly funded programs even when a Somali is in charge of DHS and the county’s pockets.

Ugh, this is incredibly frustrating and hurtful.

Chair Mohamud Noor:

Adigoo anaga noo eg, in hadana nala ciilo, oo nala cunsiiriyo waa nasiib iyo ayaan darro. Maanta hadii aadan dadkaaga u hiilin, goormaad noo hiilinaysaa? DHS iyo Counties adaa xukuma jeebkooda. Yay na ciilin adoo nool. Yaan ilmo yar oo autistic ah lagu jeestaynin. Yaan hooyo iyo aabo Soomaali ah laga oysiinin adigoo nool. Yaan nalagu dultumanin adigoo nool. Waa in’aad DHS iyo counties dhibaatooyinka an nagu hayaan wax ka qabatid.

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

Idil Abdull – Somali Autism Mom & Advocate

Alright – so, if you read my blog or know me then you are aware that I am not a fan of one Minnesota hoax governor Walz. I think he preaches sugar, practices salt and for sure divides our community. Divide and concur is an old tactic that sadly still works. He always finds one or two people who look like us but do not understand policy from poop to speak with. He takes a picture with them, maybe eats one or two sanbusa, befriends them on social media, and viola like magic – he is for us. Yay!

At any rate, state governors unlike the federal government have to balance their budget. This year Minnesota has lots of lots extra money and with that, the governor has a huge discretion on how that funding is used. Here is his budget for this year.

There are potentially 4 main agencies that can do something about autism.

Minnesota Department of Health, (MDH). Walz just appointed a black commissioner. I do not know enough about her to have an opinion. If you control F search autism – you will see it is mentioned only under cannabis. Autism is one of the conditions that a patient can legally purchase cannabis. That is it. No other autism is mentioned. Keep in mind, there are three areas MDH must do: Assurance, Quality, and Assessment. And, One Minn Hoax Gov fails autism families again. There is no autism research funding under its assessment charge. No funding for telling families about resources and services available which would be under the child and maternal health which includes children with special needs. And, definitely, nada under quality. The last time, MDH did anything about autism was Gov Pawlenty. You know, the party we minorities think they don’t help us.

If you control F search Somali – I think there is something about drug overdose. It is mediocre at best.

Minnesota Department of Human Services (DHS): This agency takes billions of the state’s budget by far. It employs more people than a small country. It is run by Commissioner Harpstead. North Korea is more welcoming than her. Under this commissioner, more black and brown employees have been fired than the previous 3 commissioners combined. So many providers of color are screwed with probably weekly. DHS is in charge of services for the elderly, disabled, and the poor. For autism, DHS has two things.

1. To add Native American-related items which are probably needed.
2. To study licensure for EIDBI is not a bad idea, but if history is a pre-indicator of the future, this is to squeeze and close minorities, especially Somali autism centers. We know that DHS disproportionately screws with black and brown providers. From what I understand, there is no Somali employee at SIRS or provider division, or in the EIDBI area. In other words, unless we fight back, DHS will without a doubt go after Somali EIDBI providers.
3. DHS did not add any grant or funding to ensure autism families are aware of services and available resources. Nothing was added for positive behavior support or person-centered training. Sad but not surprising.

MDE – education department has a black man heading now. I do not know him enough to have an opinion. From what I can tell, he seems to care about non-exclusionary discipline and the education gap. We will have to wait and see if it is just hot smoke or if MDE will do something about school districts that disproportionately fail and suspend students with autism/disabilities as well as black/brown kids.

DEED – I don’t have enough knowledge about this agency to have an opinion. I do know they are supposed to help our kids with finding employment. As my son gets older, I guess I will have to learn about DEED.

For the rest of the agencies, I hope people read the budget and proposed policies to see how Gov Walz did. In my opinion, he failed our autism families again. Sadly, no one in the community cares enough to tell him including our elected officials.

If you remember, just before the election, Gov Walz used magic words like equity and racial disparities among blacks to have meaningless zoom meetings coordinated by MDE’s asst commissioner who is a black woman. My guess is it was to get the black vote. Gee, I wonder where I heard that from.

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

Idil – Somali Autism Mom & Advocate

Alright – so, Remember the movie the devil wears Prada with Meryl S. This movie reminds me of Dakota county. I know you are thinking – how and what now? Let me line it up.

Dakota county is arguably one of the wealthiest counties in Minnesota. It is also one of the prettiest. It has trees, lakes, (ok every county has lakes here), beautiful homes, and equally beautiful people (ok not the county commissioners, oh come on). So, what is the problem then? You see beauty does not buy kindness, compassion, or caring.

This county by far in my 15 years of doing autism advocacy has the cruelest, heartless, and unkind employees from their receptionist to their director to their commissioner. I have never seen anything like it. That is a mouthful, so let’s dissect it for a minute. We know that every county in this 87-county state has a biased and racist staff, usually low-level ones. Fortunately, the higher an employee is the more reasonable they become. Not Dakota; Garbage from bottom to top and from top to bottom. Not just racist and biased but heartless, cold, and cruel to autism families. How can anyone do that? How can anyone support that? Well, we know two of their commissioners Watkins and Halverson voted against what is now known as EIDBI when they were MN House reps. In other words, these two were never for autism families nor for equity even before they became county commissioners. I simply can not understand why we keep electing the same people and expect different policies.

I have seen where they just are pure devils with small vulnerable children with autism and their families. Seriously, I have never seen anything like it. How can a whole county be baaaad to the bone?

If you know me or read my blog then you know that nothing energizes me more than some bureaucrat who sits comfortably in an office and slept well last night pick on an autism family. That energizes me to my core and soul.

The question now is what can the state Medicaid agency do about this? who has the authority to ensure children with autism and their families do not get screwed by Dakota county? What role does or can CMS play? Where does the funding come from and what accountability measures are there for counties? So many questions – so little time. Oh wait, we have time as I will now add Dakota county to my whiteboard of yucky and yuckier who think autism families can be walked on, dissed, or dismissed. No way.

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

Idil – Somali Autism Mom & Advocate

Alright – so, where do I even start with this blog. My head is spinning. If you follow my blog or know me then you understand my love/hate, ok mostly hate with Minnesota health plans. Let’s explain a bit to anyone new to this blog. Over a decade ago, there was a black boy with autism who was denied autism therapy (ABA) by Health Partners. This child had Medicaid via Health Partners. In parallel, the MN state Medicaid agency (aka DHS) was approving autism therapy to mostly non-minority children with autism who had fee for service Medicaid. Long story short, this child’s family hired a local attorney who was also an autism mom. They sued HealthPartners and won. 

This was the gift that was going to drive my autism advocacy which we successfully advocated in both Minnesota and at the federal level to cover autism therapy for ALL Medicaid children with autism. All good, right. Not so fast. They always come up with another way to screw with our kids. In theory, health plans are supposed to follow the same rules as DHS when covering autism therapy. At least that is what I and others did back when Gov Dayton was here. We worked with state legislatures, DHS’ asst commissioner Nathan and CMS (this is a long video, I miss IACC but not the 8-hour meetings; the CMS coverage part is about 6:48 time towards the end) to ensure equity and equality. So we thought.

Now access is the law, but the rules are different similar to when black Americans were told you can vote but hold on now, you need to pass a difficult reading test. Low-income children with autism who have a health plan via Medicaid can now access the services but the rules are sooooo harder for providers. This means the provider will simply not take the MCO autistic kid which creates what? that is right more disparity, you know Minnesota’s middle name. I like to call it the land of 10,000 racial disparities.

DHS held what they are calling meet and greet events with health plans. So far two (BCBS & HealthPartners) have presented. What they said is yes we will pay for autism therapy but you will need to follow more difficult rules and processes than DHS. The provider has to get their practitioners enrolled with DHS which is good then get enrolled with the health plan which is also good. Wait for it, here comes the reading test. DHS will retro pay the services provided by the practitioners but the health plan will NOT. In other words, the agency will not be reimbursed for the therapy they have provided to the family. Now, what now? what the heck?

So this means the EIDBI agency will have to eat this cost. Tell me what agency can survive by not getting reimbursed for services they have provided? Why would any agency do this? who suffers? you guessed it – the child and the family.

I am soooooo pissed right now, I don’t even know where to start. I want to retire because I am old, tired, and have been doing this for 15 years. I do not see anyone else who wants to continue this thankless headache.

As I think through this. I really think fighting with crappy DHS or even the health plans is not the answer. We just need to write a law that says the patient has the right to opt-out of the health plan. Rep. Liebling had a bill about it this year, but Sen. Utke was against it, and it did not pass. I think we can revive this if we come at it from the patient and the provider’s perspective.

MCOs are simply not working for the member nor for the provider – period. They have unnecessary and different rules than DHS, are mostly rude, cruel even, and suck. Not a typo.

Here are my previous blogs on Medicaid paying for low-income children with autism. I mean seriously – isn’t Medicaid for the poor?

CMS approves autism coverage for the whole country!

July 8th, 2014 IACC meeting where this awesome news is announced. It is now 2022, and the fact that we are still asking for the same thing is why we have horrible and shameful racial disparities in Minnesota.

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

Idil – Somali Autism Mom & Advocate

Alright – so, The Minnesota Department of Human Services (DHS) is proposing changes to amend the current early intensive developmental and behavior intervention (EIDBI). See what they are proposing and my public comments below.

Idil Abdull, Somali Autism Mom & Advocate

Submitted at 8am on June 3^rd, 2022,

Comments for DHS’ proposed changes to EIDBI

Proposed changes

DHS is proposing to:

1. Remove authorization requirements and limit on billing units for the individualized treatment plan (ITP):

This would allow providers to bill for this service as needed without authorization. Currently, the limit is 60 units to develop the ITP, with the option for providers to request an additional 30 units every six months. By removing the limit on how many units a provider can bill and the requirement to request authorization, the provider will have the flexibility to develop person-centered treatment plans and ample opportunity for progress monitoring updates. It also will ease the burden on families who transition to a new EIDBI provider agency and request an updated ITP.

My comment: First, I would like to state that I have requested the restrictions that were put on the ITP back in 2019 to be removed. DHS came back with incorrect information stating that it was CMS and not them who can do/request the changes. The idea that DHS is now asking what I have suggested years ago speaks volumes of how deaf tone the state Medicaid agency is to the needs of children with autism and their families. I want CMS to understand this and keep it in their mind. DHS does not listen to nor validate our needs, concerns, and suggestions until I usually have to complain to you at CMS. This should not be the case; the state Medicaid agency should be willing and open to suggestions from stakeholders. I respectfully ask CMS to always look at DHS’ changes to EIDBI with an extra eye and always ask them how they involved families, advocates, and providers. Do not assume what the state Medicaid agency is telling you is accurate, please verify with stakeholders.

2^nd, I am confused about the wording in this change because it does not clarify what the end intent is. What I asked was to keep the 72 hours maximum we had before the 2019 code edits. Is DHS asking the same thing? Is there a limit to the initial ITP’s 60 units and 30 each six-month treatment plan?

2. Eliminate the Technical change form, DHS-6516 (PDF):

Currently, providers submit the technical change form to DHS to request an adjustment to an existing, approved service agreement. By eliminating this step, providers would, instead, request all ITP updates or changes directly through the medical review agent.

My Comment: I did not initiate this change and I am ok with it. I support. However, please note, that DHS did not consult with families, advocates, and providers on this.

3. To update the definition of “on-site” as it relates to high-intensity intervention (i.e., high staff ratio) services:

Currently, the QSP or Level I provider must be in the same physical location to meet the requirements of being “on-site.” DHS is proposing to update the definition of “on-site” to include that a QSP or Level I provider can be present and available via telehealth when appropriate to increase access to this essential service.

Note: A higher staff ratio is defined as two or more qualified EIDBI providers delivering the intervention to one person under the direction of an “on-site and available” qualified supervising professional (QSP) or Level I provider.

My Comment: This is fine, and I agree as it is sometimes difficult for the QSP to be present physically. Again, DHS did not consult with families, advocates, and stakeholders. They are always trying to shove down our throats their ideas without caring about how the people on the ground will be affected by their changes and rules.

The process to submit comments

Email comments to DSD.PublicComments@state.mn.us no later than 4 p.m. on Friday, June 3, 2022.

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.

Comment: I think DHS needs to do this before it suggests things. Talk with stakeholders, not at them, engage with us not dictate. Practice what you preach with action.

Thanks

Idil Abdull, Somali Autism Mom and Advocate

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

Idil – Autism Mom & Advocate