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Alright – so, as an autism mom, I am tired 8am, 8pm, 1pm and 1am and in-between. I cannot remember the last time I slept 8 hours straight without interruption. This is the same for almost all autism parents. We are tired and exhausted. Children with autism often do not sleep at night. I once fainted after my son did not sleep for three days and nights straight. This is not unusual for our families.

For the Somali community, autism is soooo high and it is impacting us profoundly. When I see a Somali family with two-year-old with autism, my heart breaks. My son is 21 now and for our community to still have no answers is hard, heartbreaking and tiring.

We have to produce Somali researchers, BCBAs, licensed mental professionals, developmental peds, psychologists and psychiatrists. It is more tiring to be always alert with providers that do not reflect our community.

So, pretty please; if you a young black, brown and/or Somali person, learn to be any autism professional. Learn about autism, learn about our children, families and needs. We are in need of your services, support and guidance.

When I see a therapist that reflects my son, my heart melts and I am relaxed. I can speak for almost every minority autism parents. It is a different feeling.

Now, there may be some Oreo and twinkie people – I do not speak for you. You can read my blogs about Oreos and twinkies.

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

Idil Abdull – Somali Autism Mom & Trying to retire advocate.

Alright – so, IACC. How is it possible for anyone who works with children with autism to not know about IACC. Seriously? Anyone who cites research, funding plus, plus, plus needs to know who IACC is, what they do and how you can be in the know about autism.

I have seen so many people including parents, therapists, agencies, etc. have zero idea about this federal autism committee. As the chair of NIMH and IACC – Dr. Insel used to say – if it is about autism, it is being talked in IACC. If it is about autism, IACC is on it.

My gently friendly advice is get to know this committee. Even apply to be on their public committee. As a public member, you are selected by the US. Health and Human Services Department. IACC is funded and governed by a federal law – autism cares. Get to know this law, the authors of it, the process of it, so on and so forth.

You cannot help children with autism and their families if you do not know what laws, rules and policies that govern the services.

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

Idil Abdull – Somali Autism Mom & Trying to retire advocate.

Alright – so, where can I even start. Because the neglect and subconscious bias of DHS’ EIDBI team, BCBA is now required for EIDBI benefit. There are not enough BCBAs in this state at all. They did not consult with stakeholders as required by EIDBI statute. They did not check to see if we have adequate and diverse BCBAs. We do not. So, what happened as a result?

BCBAs came into Minnesota from various agencies with the intent to take financial advantage of minority ABA agencies who are mostly Somalis in Minnesota. Ugh.

Soomaaliduna waxay dhaqan u leedahay in ay lacag iska bixiyaan iyaga oo aan fahansanayn waxba. The ability for so many Somali ABA agencies to pay highway robbery to these blood sucking BCBA consultants has driven the cost to the point of madness. For example, they are charging thousands of dollars per few hours a month. Hello, will the real slim shady please stand up. The reimbursement for a BCBA in Minnesota is anywhere between $70 to $80. Where the heck is this money going to come from? It will bankrupt the agency which will hurt tremendously the child and family. Is that we want?

To DHS, this highway robbery fees they are charging mostly minority/Somali ABA agencies will result cutting corners from the children and families’ quality of care. You know the people you pretend to care about.

What can be done about this. Repeal and amend this crappy law and change it to something that is reasonable. Make sure these out of state BCBAs go through better and rigorous screenings and rules to ensure the cost is reasonable. DHS needs to audit them to make sure they are not taking advantage of anyone let alone the already screwed with minority communities.

Ugh, I am sooooo frustrated by the current DHS commissioner’s inability to understand have a better handle of autism services under EIDBI.

We elect the people who create/amend/delete laws in Minnesota. This is the time to contact them and request change in this BCBA requirement. It is not working; it has not increased quality. It has added to low quality and decreased services to the children and families. DHS – we need you to wake up and do your job. You are responsible to ensure people with disabilities are getting quality of care services in a manner that is person-centered and culturally responsive.

To these BCBA remote consultants: You cannot preach culturally responsive when you are all non-diverse. Diversify your staff. Learn about our cultures, stop charging us highway robbery fees. Where is your highly mighty BCBA ethical code in this. Isn’t charging K Street lobbyist rate wrong? I am ashamed on the rate you are charging and the questions and belittling you are doing with so many Somali ABA agencies. On a weekly basis, I get a phone call from some Somali ABA agency complaining about you – the remote BCBA. Come on now. Stop intimidating and belittling us. It is not ok and cannot be tolerated.

To Somali ABA agencies: Waxa aad soo galaysaan maaha business, waa caruur hooyo iyo aabo dhaleen. Hadii aydaan naga naxayn, oo aydaan noo naxariisanayn – iska taga. Barta ABA iyo autism. Barta the state/federal rules and policies. Sameeya sida saxa ah ee loo caawin lahaa carurrta autistiga ah iyo reerahooda.

The above words do not reflect any candidate, agency, or committee.
Idil Abdull – Somali Autism Mom & Trying to retire advocate.

Alright – so, if you know then you understand my ughhh with the BACB board. Although they have been sort of listening and getting a bit more diverse in their board, sadly not staff though. They even now have data that shows us the diversity of BCBAs nationwide. This is a board that was all white when I started sending them emails to remind them how yucky they were maybe over a decade ago. They are located in Colorado in marble flooring, mighty building and literally make up ethical rules. Who is to say your morals and ethics are better or worse than mine, right? Well – BACB thinks it has the right to tell us what is ethically and morally right and what it is not.

Let us not forget, we all have diverse ways we think based on our culture. In fact, all human behaviors are embedded in their cultures. In other words, one person has zero right to say to another culture my ethics or morals are better or superior than yours. We should all respect each other’s culture and values.

Now, where am I going with this. Well, the almighty BACB board that preaches to the rest of us to do the right thing is now allowing their BCBAs to charge an arm and a leg in Minnesota’s EIDBI benefit. The reimbursement rate for EIDBI is public since Medicaid funds it. The most per hour/encounter for the treatment plan is about $80.00. Yet, these blood sucking greedy bastards are charging mostly Somali EIDBI providers up to $1000 per hour. What the heck? Where is this money going to come from? Guess who is going to suffer – the children and families.

What is the state Medicaid agency doing about this? Nada. In fact, DHS’ policy lead and state legislator Rep. Hicks is helping agencies like Holland with what to write and how to milk mostly minority/Somali EIDBI providers. Un-bleeping believable. What is DHS leadership and commissioner doing about it? Nada. Imagine if Rep. Hicks was Black or even had a suntan. DHS would be releasing news, punishing, and screaming from their lungs. Now, silence is their game. And, they say there is not racism in DHS. Oh please. That is like saying the ocean is not salty.

Equally important, what is the BACB board that rides on a high horse doing about this highway robbery by their certified BCBAs? nada, zilch and zero. Lovely.

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

Idil – Somali Autism Mom and Retired Advocate

Alright – so, Disney known as the happiest place on earth became the unhappiest place when it changed it is reasonable accommadation policy for individuals with autism and other disabilities.

I have taken my son to disney more times than I can count ever since he was one. Then few years ago, Disney changed it is policy. Everyone regardless of their abilities or disabilities had to wait in their loooooong lines. Well, actually if you had a child with autism, they gave you a card, you took it to whatever ride your kid wanted. The ride people told you the wait time is an hour, two, etc. The last time, I took my son there, they told us the wait was for one hour and half and we can come then.

Well – what happened next was olalalalaaaa. My kid was not able to wait that long as it is often the case for many children with autism so he tried to climb up into the ride, had a behavior on the floor, and would not get up. We had to call for help; they helped us get out of Disney and that was the last time we were there. This was before the pandemic.

After their new rule, many autism families have sued and I have been following the outcomes. There have been over 40 lawsuits. Initially the families won, then Disney repealed, and lately as recent as last year in the fall, Disney has been winning. Ugh.

The last case was in front of the 11th circuit Federal court. This is sooo frustrating and is one of the reasons that I am big proponent of having judges who reflect the people they serve in disability and racially.

Here are some of the Disney/Autism Lawsuits:

https://wdwnt.com/2020/07/mother-of-autistic-son-loses-court-battle-against-disney-after-suing-them-over-disability-access-allowances/

https://www.law.com/dailybusinessreview/2022/10/07/11th-circ-upholds-disneys-bench-trial-victory-in-yearslong-ada-autism-discrimination-lawsuit/

Disney can’t dodge mom’s lawsuit after autistic son was barred from Lehigh Valley Mall store for not wearing mask

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, Holland autism center is owned by an autism mom. Let’s start there, at least with the good. My son used to go to Holland years ago. This mom started the center because of her son. She rented a building that used to be a police station, hired a BCBA from Florida and started with her son and few others. We were one of those original few. As I have gotten to know her (Jennifer), I really liked her vision. She took her kid to an ABA center and did not like what she saw and how they were teaching her kid and treating him. So, she did the logical and humane thing to do – instead of asking someone else to give you a fish, learn how to fish so that your child has abundance fish forever. All good, right? I say yes.

As a result, I have gotten to know her more and more, we would go to have coffee, or just chat. She got to know other Somali autism parents, we would have lunch and hear her background. It is actually one to admire. She became successful from other businesses (computers) she owned. She got to know Somali autism families who believe vaccines caused autism and even invited Dr. Wakefield to Minnesota. Things were all good and dandy, until Rep. Kim Norton (dfl from Rochester) introduced a bill that stated the state of Minn should cover ABA therapy for children with autism who had private insurance. Boy oh boy, where to even start with that blatant racism. Taking public funds to help the wealthy while denying the same ABA therapy to low income autism families. What now?

Jennifer and others mostly white autism families sided with Rep. Norton. They testified for her bill, came in drones for it, packed committee rooms, and were relentless. In other words, Jennifer from Holland center was against what later became EIDBI, that is low income autism families getting ABA therapy. This is where she and I had to part ways. I remember she sent me an email once that said, if we stopped our advocacy, she will help our community. I told her no way.

So then why is Jennifer and Holland center exploiting mostly minority (Somali) EIDBI providers? Ain’t that a good question? They are charging them more than the reimbursement rate; they are – according to some providers making unreasonable demands, bullying them, and abusing them. They are also colluding with DHS staff by telling some of the EIDBI providers that they are backed by DHS EIDBI staff. What now? What the heck?

I guess as Michael Douglas said in his Wall Street movies – greed is good. Except, this is not wall street or a movie. It is about our children, families and community. It is about racism at its core. It is about taking advantage of the poor and low income. It is about the oppressor oppressing the already oppressed communities.

So, what is DHS – you know that state Medicaid agency doing about this? nada. Why? because no one holds them accountable. Why is Holland’s owner who at the very least should understand autism families’ pain taking advantage of minority autism families and EIDBI providers? Your guess is as good as mine. I have no idea. I expected a lot more from an autism mom even if she is rich and white.

Shame on you Holland and Jennifer. Imagine if someone did this to you. You need to stop taking advantage and expoiting minority EIDBI providers.

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

Idil – Somali Autism Mom & Retired Advocate

Alright – so, where do I even begin. Our community is akhas caleeg. Inaga uun baan is cuna, dadka kalena waan ka baqnaa. Qofkii walaalkiis loo xiiroow adna soo qoyso. DHS way eryeen gabar Soomali ah markay u baahnayd in ay fasax qaadato, laakiin gabar cadaan ah shaqada way u hayeen markii ay xildhibaan noqotay. This happens while we have the state house DHS committee a Somali to be in charge. Akhas caleeg Mohamuudoow. Dadkaaga u hiili oo cunsuurinimida ay DHS nagu hayso naga ilaali.

So, DHS fired and did not want to keep the job for a Somali person who worked at EIDBI while they kept the job for a white woman (Kimberly Hicks) while she became and wrote laws that affected them. How do you like them apples. Please tell me that is not double standard and pure discrimination.

Further, I have been told that DHS EIDBI will conduct its trainings without any input from autism families, providers or the public. They are to tell us whatever the heck they want and we have to accept it, digest, process it and swallow it. This is a publicly funded program that was advocated by the public for the public and we the public have no say. Unless we agree with the EIDBI team. Unbelievable. They get worse by the minute. They get more entitleed and priviledge by the second. Half the information that especially Ms. Berning tells us is wrong and we are not to have any questions or comments. No way. Further, she isn’t that good of a trainer. She repeats herself over and over, hogs the time then says – well time is up. And, we are to take that. No way. Of course, they always find a house negro who agrees with them. The idea of dividing minorities is nothing new. It is how this country was originally built.

Malcolm X said it best. take a watch.

Waan ogahay in ay jiraan Somali badan oo ila soo xiriira laakiin DHS ka baqa, waayo? fadlan barta xaqiina iyo xuquuqdiina oo iska celiya DHS iyo cunsuurinimadeeda. Maxaad la aamusan tihiin? Qof Soomaali ah haday Nicole ama Kim ahaan lahaayeen, waad cuni lahaydeen. Maxaad uga baqaysaan hada?

Walaalkaa oo la dhibaataynayo hadii aad aragid, ha aamusin ee u hiili.

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

Idil – Somali Autism Mom & Retired Advocate

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. 

Thanks

Idil – Somali Autism Mom & Retired Advocate (5.31.23)

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.

Alright – so, you’ve probably heard that the University of Minnesota (UMN) which is a state agency, and funded by the state as one sued UCare – a health plan. What do the two have to do with each other and why should we really give a flying hoot about it.

Well, it turns out that UMN is sort of in charge of Ucare. What really? Why? I guess it was funded, was part of its inception, and is the majority of their board. Ucare then tried to limit the UMN authority within its board so that it can partner with others such as Sanford. Who the heck is Sanford? some old white dude who owns a bunch of rural health systems and is headquartered outside of MN.

Then that is when all hell broke loose. Every white person I know was against it this merger. They complained to the attorney general, to the media, and to their legislators. What happened then? miracles started flying and heads turned. I asked a few Somalis about this. Most had no idea, a couple said Ucare and UMN can both go to hell and leave Minnesota. What does this have to do with autism? nada. So, why am I writing about it?

Let me line it up. Have you ever read this author’s work. She makes the point about having an international women’s day. If women were equal to men, there would be no special for them. You have never heard of international men’s day, have you? There is black history month, why? If blacks were equal to whites in America, there would be no special month for them. When I advocate as a black woman, I am called – angry, rude so on and so forth. When a white autism mom advocates, she is passionate and cares for her child and others like her. You see there is this subtle yet persistent and hurtful double standard.

This merger and all that it produced reminds me of what it is like to be a black, woman, and Muslim advocate. As a result of the white folks who were upset about this merger and sided with UMN, heads turned. The media wrote about it. The governor heard and changed his tune and is apparently now against the merger. The attorney general who was neutral before is now hesitant and the best part is legislators who represent some of these people started writing legislation that would prohibit state-funded anything going to another state. Imagine that. Imagine when black and brown folks complain about something if the same heads turned. Imagine if the legislators who represent us actually started writing legislation that would address our needs and concerns. Imagine if black and brown-owned media outlets started writing about the issues proactively. Imagine that.

Instead, we are called angry black people, difficult, wrong, abrasive, yada yada, and more yada.

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

Idil – Somali Autism Mom & Advocate