Monthly Archives: March 2023

I Will be Speaking @ The Federal Interagency Autism Coordinating Committee on 4.4.23

idilabdull | March 29th, 2023
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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 4th, 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

Category: Autism Policy

The Power of Somali State Legislators in Minnesota – 2023 is Simply Unparalleled

idilabdull | March 27th, 2023
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Alright – so, by now we have established Somalis are politically savvy abroad. If you ever went to any Somali coffee shop or Starbucks, you will see Somalis drinking cappuccinos and talking about politics. Some of them have turned this niche into a political career. Although there are many Somali elected officials in Minnesota, it is also happening all over the world, from Canada to Europe to Africa. 

Let’s concentrate on Minnesota for this blog and autism of course because that is MY niche.

There are five state-elected officials in Minnesota, Mohamud, Hodan, Zaynab, Omar, and Samakab. Three are house representatives and two are senators. Two in the House – Hodan and Mohamud are extremely important committee chairs – human services and economic development. Hodan’s committee is new and did not exist before. Usually, Dflers make up more committees. The speaker must’ve made this one up. But Mohamud’s committee is extremely relevant to our community – Human Services Finance which is where DHS is under. I wish someone would put DHS under me; I would have them for lunch by breakfast. This is the agency that has screwed with more Somalis than Siad Barre.

In the Senate, Omar is in charge of all things higher education that includes all state colleges and universities. Imagine, being in charge of where UMN gets its funding from. That is one bias university, especially the ICI dept.

So what gives? out of 5, three are in charge of a big portion of the state’s budget. Plus in the state senate, the GOPs have 33 senators and Dflers have 34. This means the two Somali senators literally can shape what passes and what does not pass. In other words, anything that passed or will pass this year in Minnesota is because a Somali person voted for it, and allowed it. Imagine that. This includes anything that is good or bad for our community.

They say the proof is in the budding; when the rubber meets the road, and when it is all said and done. If after May of 2023, our community is still struggling, our kids with autism are still being screwed by DHS or the counties, our students are failing in schools, and our businesses are trying to make ends meet because DHS has us for lunch by breakfast and our elders are not better off than before, then we can and should elect different leaders. Electing the same people and expecting different policies is the definition of insanity. Further, I hope none of them think they are where they are without us. It is the Somali community that has put these 5 on the map and in the powerful positions they have by campaigning for them, donating to them, and everything in between.

Ha iloobinina meeshaad ka timaadeen iyo dadkii idin soo shaac bixiyay. Ha noqonina lax bacaad lagu lisay. Dadkiina wax tara.

Additionally, I am simply dizzy by the level of minority and women leadership this year in the state legislature. I remember when there were two blacks – Jeff and Bobby, that was it.

The House speaker is Melissa; well she has been there before and ugh I am not a fan of her. She has always thrown us under the bus and over the bridge when it came to education discipline disparities. Next to her is Athena who is black. She will brown nose Melissa and has said time and time again she would protect the teachers instead of the students. I almost miss her predecessor John L whom we campaigned against because he was against charter schools.

Senate – Kari is the majority leader. She represents NE Mpls which we know has lots of autism families. In my humble opinion, I find her to be fair and approachable. Her staff before were yucky. She now has a Somali LA which is a pleasant surprise. The Senate president is an African American – Bobby. I have seen him way back when he was a House Rep. He usually does not do much about autism, but he has worked very hard for his community’s issues which is needed. Good for him. He does a lot with voting rights, giving grants, etc.

There are a lot more Somali elected officials in Minnesota and in the US from the school board, city council, county commissioners, mayor, etc. I am incredibly proud of them. The sky is not even the limit for you, but please do not forget where you came from and who you are. Do not become to go along to get along. Stand up for your community. 

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

Idil – Somali Autism Mom and Retiring Advocate.

Category: My two cents - ok 1 1/2 cents

Sen. Hoffman silences a Somali Autism Mom – What now?

idilabdull | March 24th, 2023
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Alright – so, if you know me, read my blog, or have been following autism policies in Minnesota then you know Sen. Hoffman has never been in our corner. Yes, I know he is charming, and charismatic and can say a few Somali or other East African words. He also writes a couple of bills and grants for one or two minorities. Woo hoo.

When it comes to autism, he has been against the low-income autism family. He voted against what is now known as EIDBI. He refused to do anything about suspending black, brown, and students with disabilities. God knows I have tried to campaign against him without success thus far. I will be coming back until he is defeated at the polls. Oh and, he is responsible for requiring a BCBA in EIDBI agencies even though there are hardly any in Minnesota. You see, Sen. Hoffman does not do his homework before writing a bill. Don’t get me wrong, he is a very smart legislator. But he is too arrogant to do anything inclusive with everyone.

Anyway, he is now carrying a bill for the group that is as welcoming as 1950s Alabama golf club that is asking for a rate increase in EIDBI. How do you like them apples? This group campaigned, lobbied, and testified against EIDBI to the nth power.  And, they want to exploit the system and make money out of it. Ladies and gentlemen, this is what is called white privileged.

Below is my written testimony:

Minnesota Senate

Human Services Committee

Chair – Sen. Hoffman; Vice Chair – Sen. Fateh

March 27, 2023

     Re: Opposing SF 1593 – EIDBI Rate Increase; it is waste of time, money, and resources

Dear Mr. Chair and Mr. Vice Chair,

My name is Idil Abdull, I am a Somali Autism Mom, Advocate, and EIDBI provider. I oppose this bill for several reasons. First, I am disappointed that I am being silenced and the chair has refused to allow me to speak publicly and oppose this unnecessary, expensive, anti-diversity, and not needed legislation. This is a public committee using public funds run by public elected officials. It is unprecedented that some of the public are muted and silenced.

  1. It is redundant. As you know the governor and DHS have a rate study language in their bill and budget. That language will have diverse voices, is cost-effective and necessary.
  2. It has a fiscal note that we do not know yet.
  3. If the goal is culturally responsive to everything, and it is preached by this committee then this legislation was not drafted in such a way.
  4. As you all know, Somali kids born in Minnesota have the highest autism rate in any group in Minnesota and nationwide. Yet so many Somali autism families including me were excluded from this bill.
  5. There are more Somali EIDBI providers than any other ethnicity, yet many of us were not at the table. Quite frankly, as a black woman, I am tired of never being at the table in so many policies and often on the menu. Again, disparity is created by actions like this.
  6. I hope that this committee spends the money on this bill increasing diverse BCBAs since there are almost none in Minnesota, even though EIDBI providers are forced to have one. That is needed not this bill.

Finally, as you know Mr. Chair, you voted against EIDBI initially almost a decade ago. Back then it was not called EIDBI. We in the Somali community were simply asking MA to cover autism therapy for the low-income autistic child. It is also noted on the record that the group that is now pushing to make more money from EIDBI was against it. They testified and lobbied against it.

Thanks for your time,

Sincerely,

Idil Abdull – Somali Autism Mom, Advocate, and EIDBI Provider

 

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

Idil – Somali Autism Mom & Advocate

Category: Disparity & Politics

Appealing to a MN Medicaid Agency Judge – Not Pretty for autism and minority families

idilabdull | March 11th, 2023
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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

Category: Autism Policy

MN HF 1626 is a waste of Resources and Redundant

idilabdull | March 8th, 2023
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Alright – so, I testified against this bill as it is a waste of money, exclusive, elitist, and unnecessary.

Minnesota House of Representatives

Human Services Finance Committee

Chair – Rep. Noor

March 7th, 2023

    Re: HF 1626 – The timing is wrong since DHS/Governor have a rate study proposal in their budget  

Dear Mr. Chair and Members, many thanks for the opportunity to testify today. My name is Idil Abdull, I am a Somali Autism Mom and a pissed-off advocate who would like to retire soon, and an EIDBI provider. EIDBI was approved by CMS in the Spring of 2015, and I have been a provider since 2015, we were one of the first agencies to be approved to do services under EIDBI.

HF 1626 is asking for a rate increase for EIDBI. This is for autism therapy providers. I want to let you know that autism is extremely high in children born in Minnesota to Somali parents according to research done by Gov Pawlenty’s health department in 2009 and UMN in 2013.

Additionally, I want the record to state that Early Intensive Developmental & Behavior Intervention passed the state legislature around midnight on Thursday, May 16, 2013. I know because I was the only person of color advocating for this bill at that time. It was Somali autism parents and the Somali community that solely advocated and fought tooth and nail to ensure Medicaid-covered autism therapy.

Fast forward to today, 3.7.23, there are more minority children particularly Somalis being served under EIDBI and more Somali EIDBI providers than any other ethnicity including non-minority providers who were initially against EIDBI.

Here are my concerns:

  1. Given this dark and long-fought history in getting EIDBI to pass both in Minnesota and in CMS which was no day at the park, why were there not more Somali and other minority EIDBI providers at the table when this was being written?
  2. What is the cost, and what does DHS shall develop a rate framework mean?
  3. How will this work with DHS’ rate study proposal? The last time we proposed the current rate for EIDBI, there were multiple stakeholder meetings; DHS got data from other states to compare rates and services. This bill feels rushed and hasty.
  4. Who will be at the table for this development that is mentioned in this bill?
  5. Will this rate adjustment include increasing the reimbursement rate for BCBAs since they are charging Somali providers and other small EIDBI agencies anywhere between $300 to $1000 for an hour for level one therapists? DHS reimburses level one $70 to $82.00 per hour.
  6. How can the fee be more than the reimbursement?
  7. Why is the author rushing with this bill when DHS and the governor’s office have put forth in their budget a rate and licensure study? This will ensure enough autism parents are included along with adequate minority EIDBI providers.
  8. I believe increasing BCBAs, particularly minority ones would be money well spent instead of this legislation. There is a chronic shortage of behavior analysts in Minnesota.

Finally, while I thank the author for bringing any autism legislation, I wish more folks from our community were asked to be involved particularly Somali autism parents.

It is not lost on me that the chair of this committee and the author reflect our community. I am disappointed most Somali autism parents were not at the table for this legislation. If the goal is always person-centered and culturally responsive manner, then the very least we expect from legislators who reflect us is simply to practice what they preach.

Racial disparity cannot survive and thrive when folks in power reflect minority communities. In Somalia, we call that “Lax Bacaad Lagu Lisay”.

Thanks for your time.

When EIDBI was approved by CMS.

Sincerely,

Idil Abdull – Somali Autism Mom

 

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

Idil Abdull

Category: Disparity & Politics

Lovaas’ Dr. Larsson wants to milk the system using EIDBI and autism families

idilabdull | March 8th, 2023
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Alright – so, I think Dr. Larsson is arguably the most racist, cruel, heartless, SOB person I have ever had the displeasure of meeting. This A-hole is the sole reason, I became a policy advocate. Let me put this into context.

When my son was 5 years old, this sh???t head discharged my kid by saying he was not going to be cured of autism. When the f??ck did he find a cure for autism. I remember the day he told me this. I remember what he was wearing, where he sat, how he sat, and his words like it were yesterday. If you are a parent and some nutjob tried to screw with your child, then you can understand my pain.

I remember I went into the garage and cried like there was no tomorrow for what seemed endless. After I pulled myself together; I wrote my plan for the following week.

Step one – call the governor’s office and ask how and where I can file a complaint against Lovaas and Dr. Larsson. Gov Pawlenty was the governor in Minn at that time. They tell me to call DHS’ commissioner who refers me to Dr. Sulik. (I sooooo miss him). Sulik calls Alex B and she tells me I cannot file a complaint because DHS and the state do not pay or cover ABA. I am thinking what now? My son gets ABA. How is he getting it? It turns out – if you were middle class or higher, you could get TEFRA which enabled your child to get autism therapy through Medicaid. If you were low-income and had MA, the same therapy was denied to your child. How do you like them apples? The state Medicaid agency was denying autism therapy to the poor while it paid for the wealthy. Isn’t Medicaid for the poor?

This started a long fruitful journey in which we eventually prevailed. Larsson and his vanilla posse were all against it. They testified against it, hired a lobbyist to screw with us, and even a publicist. Boo hoo, cry me a river. In the end, the low-income autism family won.

So, why is this racist SOB now even in EIDBI? greed. Remember how he fraudulently stole Medicaid money to the tune of over 2.8 million dollars. Well, he is baaaaaack to take advantage of the system again. It must be nice to be a white privileged man. If a black man did what Larsson did, DHS would have him for lunch by breakfast. Soooo infuriating.

In yesterday’s committee hearing, he brought an innocent Somali autism mom to use. Lovely. We are not stupid and will not fall for divide and conquer.

What is he asking – highway robbery and to steel again at the expense of the children with autism. He wants a rate increase for services he testified against, why? greed and more greed.

This bill needs to go bye-bye and fall off from the Omnibus. The Gov and DHS already have a more thoughtful and comprehensive way of doing an EIDBI rate increase. Why would the state do this twice at the same time? It is not cost-effective, and a golf club in Alabama in the 1950s is more inclusive than Larsson and his posse.

I ask Chair Noor to do the right thing and eliminate this bill. It is not needed. There is already better language in DHS’ bill which will have more inclusive and diverse voices. The goal is to be inclusive, not exclusive.

Oh and, I also sued this A-hole in federal court – 8th circuit. This is also why I am constantly asking to have judges that reflect us.

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

Idil Abdull – Somali Autism Mom & Advocate

Category: Disparity & Politics

MN Schools Do Not Need Suspension in their Toolbox – They need training and compassion

idilabdull | March 1st, 2023
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Alright – so, I am again testifying in an education committee about keeping our kids in the classroom. Why is this soooo hard for so many. How can we have the most minority legislators and still struggle with this issue? what the heck? The whole idea of voting for legislators who reflect us is to ensure our issues are important and addressed. Ughhhh. This is sooo frustrating.

Minnesota House of Representatives

Education Finance Committee

Chair – Rep. Youakim

March 2, 2023

      Re: Supporting HF 58 prohibiting Suspension for K-3rd grade

x

Dear Madam Chair and Members, good morning. My name is Idil Abdull, I am a Somali Autism Mom & a pissed-off advocate who would like to retire.

First, I would like to thank Rep. Richardson for carrying this important legislation and for always being in the corner of students and families.

Alright – so, here we meet again. As you all know, my son who has autism was suspended by teacher Kelly Morris and principal Jaysen Anderson in Bloomington School District on 5.3.2018. I am not going to repeat data and numbers of how students with disabilities are kicked out of their free and appropriate public education. You already know that 2+2 is four.

Madam Chair and Members, instead today I want to tell you that I contacted Bloomington school district’s superintendent – Dr. Eric and asked him if I could speak with the principal who suspended my kid. He agreed and we had a zoom meeting on 5.3.2022, four years after the suspension.

I asked principal Jaysen if he thinks suspending my son had any educational value. He said no.

I asked Principal Jaysen if he had remorse for suspending my son. He said yes.

I asked him if my son understood suspension; he said no and in hindsight, he would not have done it. I reminded him that as a principal of color, he bears a huge responsibility to ensure students are treated fairly and not punished unfairly.

Additionally, I requested public data about the training the principal and the teacher had on autism, behavior reduction techniques, and proactive antecedent strategies as well as culturally responsive methods. Both did not at that time.

You see Madam Chair and Members, what we need in this education toolbox is not suspension; it is training, training, and training. It is ensuring we are setting up the teachers and principals for success in how to not just teach children math and science, but how to use non-exclusionary methods and understand the needs of our students, particularly those with special needs.

I want to end with a message you told me Madam Chair years ago when MN had a divided legislature. You said – give me the house, the senate, and the governor’s office, and we will make leaps and bounds to keep kids in the classroom. It seems that your wish has come true because that is exactly what you currently have. The ball is now in your corner to mean what you say and say what you mean.

Sincerely,

Idil Abdull

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

Idil Abdull – Somali Autism Mom

Category: autism and public education