Monthly Archives: June 2023


Comments Off on I Have RETIRED!

Alright – so, they say all good things must come to an end. I have decided to retire after the 2023 MN legislative session ended in May. I have been advocating since 2007 – 15 years, under three Minnesota governors, three U.S presidents, countless state commissioners, countless federal agency heads and kazilian legislators. I am tired and old. When I started, I could not even say the word autism out loud. I felt ashamed and guilty. I never heard of it, never knew anyone with it and never seen another autism parent. Now, I think, breath and live autism everyday, all day with pleasure, with no reservation and no hesitation. I have been able to speak about autism in Minn Capitol, Congress, the White House and at the United Nations. I’ve had heck of a journey, and will cherish every moment and everyone that I met along the way.

I will write a blog to thank those who have supported our efforts as well as those who have been an obstacle at a later time. For now, I will say to myself goodbye and take a long overdue break Ms. Idil.

Thanks to all my fellow Somali Autism Parents; you are me, and I am you:)!

What will I do next? Relax, get off every policy list-serve, every elected official list-serve, and never bother (ok harass) any state/federal legislator or agency.

August 2023 – Amended as there is confusion – I have retired being a community and autism policy advocate. That is when around this time, I would be working (ok begging or harrasing) with legislators and state/federal agency folks about potential policy changes/additions/deletions. I am and will always be an autism mom. I am also a provider and I intend to always speak for my son, myself and the agency I work at. 

Additionally, if there is any minority person who thinks DHS one day decided to be fair and create EIDBI or any equity policies, please come out of living under a rock. Will the real slim shady please stand up and I have no desire to fall for divide and conquer or deal with house negroes. Sorry, I am too old, too smart and too tired for that. 


Idil – Somali Autism Mom & Retired Advocate (5.31.23)

Comments Off on 2023 MN State Legislative Session has Ended – How did Autism do?

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

Category: Autism Policy