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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 Initially the families won, then Disney repealed, and lately as recent as last year in the fall, Disney has been winning.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

Alright – so, the MN state legislature session has started, yay! Not really. The dflers are in complete control. You know what that means. More disparity, more Minnesota nice racism, and more inequalities. Ugh.

Let’s dig in and see who is chairing what committee and what that all means for autism and our community.

The House:

Human services policy is chaired by Rep. Fischer 

Human services finance is chaired by a Somali this year. Does this mean DHS will finally do the right thing. Nope, let’s not hold our breath. Hell would have to freeze first. It is sooooo frustrating when they look like us but do not address our community’s needs.

Senate: It is even worse in the Senate. First, crying that Sen. Abeler is not in charge. Second, Sen. Melissa W is chairing the health and human main one. She is by far one of the worse elected officials I have ever met in Minnesota. She is your typical Minnesota nice grass snake. She represents Bloomington, you know the area with some of the worst racial disparities in the state, including the school district. Sen. Melissa will not do anything good for autism at all – period. Can’t we find someone to run against her and defeat her at the polls? Ugh.

Then there is the human services committee chaired by Sen. Hoffman. Well, what can I say about him. He is charming, charismatic, and smiles all the time. He reminds me of those cold sunny days in Minnesota that we see in Jan. What is that called – fake sun. The sun that shines but never warms anything. That is Hoffman in a nutshell. He will use and say the right words like disability, mental health, equity, and disparity, but he doesn’t mean any of them. He will only make you think he cares. He does not. Sadly, this is the  Senator that DHS uses when they wanna push salty EIDBI policies and laws down our throats. Now he is in charge – yay! Not really. Ugh.

My goal was to advocate for EAA and county accountability, I just do not see success with all privileged white dflers in charge.

The only good news here in health is that the Minnesota Department of Health’s commissioner Jan M left. Goodbye and good riddance. She was useless and could care less about autism research or support. If One Minn Hoax Gov Walz was to do the right thing, he will hire Dr. Nathan C to lead MDH. I doubt that. MDH now has a black commissioner. We will have to see what she accomplishes. I hope it is not for decoration. Even MDE – the education department now has a black commissioner. I have to say I was not expecting this from One Hoax Minn Gov, Walz. There are two scenarios for this. Either, he is starting to come around and has appointed diverse commissioners who will change the trajectory of education and health disparities in Minnesota or they are the black liberals of Clarence Thomas. Time will tell.

Education – The talk of the town for a minute there was that MDE was going to be led by retired rep Davnie. While he is charming and pleasant in committees, he is and will always be in the pockets of unions and never in the corner of students and families. Do you know how many useless and meaningless hearings he gave discipline disparities and education gap? None of which produced any fruits. He always smiled and then screwed with us. It seems that Gov Walz hired an African American person to lead MDE. I do not know this one and could not write anything good or bad just yet. Let’s see what he does and how he manages to decrease discipline disparities and the education gap for students with disabilities and black/brown kids.

So, who will be leading the House and Senate committees in Education?

Senate – the policy is in the pockets of the teacher’s union. I have seen him here for years with no progress.

The finance is Sen. Kunesh. She is native American in name only. Ever since I have been advocating in the education system, Sen Kunesh has been in opposition to increasing teachers of color, reducing, and eliminating racial discipline disparities, and getting rid of the education gap.

This is my last legislative session as I will be retiring in May of 2023. Don’t worry, I will write a blog on this and tell myself, wait for it…. Drum roll pls…. Goodbye and good riddance. Yes, I know so many in Minnesota agencies and legislatures will be saying that. Maybe even a few federal agencies will too. I am ok with that. You see the idea of policy advocacy is to change policies and laws. That means people who benefit from current policies and laws won’t be happy. I have always said, I did not become an advocate to join Paris Hiltons’ BFF show.

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

Idil – Somali Autism Mom & Advocate

Alright – so, I have decided to retire from autism advocacy in May 2023. The last session was the last time that I will advocate for any EIDBI policy changes. I wanted to make sure that at least autism parents and other stakeholders have a say in whatever DHS or others try to change within EIDBI law.

From start to finish, Sen. Abeler who has been there for us from day one to the end of my journey ensured this and added this simple language that I requested. The EIDBI provisions go from line 167.13 to 173.6. The part I was interested in was ensuring that stakeholders including autism parents were at the table. This meant DHS can not just use their controlled ASD advisory council. That is a not public committee the public has access to. Here is the HHS Omnibus 

Here is the language I wanted which passed and is now a law.

169.22    Sec. 41. Minnesota Statutes 2020, section 256B.0949, subdivision 8, is amended to read:
169.23    Subd. 8. Refining the benefit with stakeholders. Before making revisions to the EIDBI
169.24benefit or proposing statutory changes to this section, the commissioner must refine the
169.25details of the benefit in consultation consult with stakeholders and consider recommendations
169.26from the Department of Human Services Early Intensive Developmental and Behavioral
169.27Intervention Advisory Council, the early intensive developmental and behavioral intervention
169.28learning collaborative, and the Departments of Health, Education, Employment and Economic
169.29Development, and Human Services. The details must Revisions and proposed statutory
169.30changes subject to this subdivision include, but are not limited to, the following components:
169.31(1) a definition of the qualifications, standards, and roles of the treatment team, including
169.32recommendations after stakeholder consultation on whether board-certified behavior analysts
170.1and other professionals certified in other treatment approaches recognized by the department
170.2or trained in ASD or a related condition and child development should be added as
170.3professionals qualified to provide EIDBI clinical supervision or other functions under
170.4medical assistance;

As always, I can not thank enough Sen. Abeler – the chair of the Senate Human Services Reform, Finance and Policy Committee.

From what I understand, DHS is supposed to update the public sometime in August. All good things must come to an end. I have one more session to advocate and it will not be EIDBI. I really do hope another autism parent who is interested in policy advocacy rises and continues this important work.

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

Idil Abdull – Somali Autism Mom and Advocate

Alright – so, the Minnesota office of legislative auditor (OLA) released a report that many of us have been waiting for that was about education gap in this state and what the education department has been doing about it. To no one’s surprise, MDE sucks in this area and in so many others. The auditor shared their report with the House education finance committee this week. I listened and thought it was really good. I am sad they did not add suspension to the reasons education gap exists. They said they only looked at the four areas that are in the law which I guess makes sense.

The commissioner of the state education department spoke after the OLA office and as usual, was defensive and refused to take any ownership of MDE’s failure in addressing the state’s horrible education disparities. This was the best opportunity to own mistakes, come up with corrective actions and apologize to the thousands of Minnesota families who have endured education gap.

What was interesting in this report was that there is not a definition of what an education gap is in law. Interesting. I guess one could say by third grade all children black, white and brown should be able to read, write and do basic math is a good way to measure.

I hope legislatures come up with some laws and policies to not just define what the heck education gap is but to decrease and eliminate it. Education is the key to life’s success and/or failures. If we are failing our kids then we are failing our success and future.

You can read the full report here if you like.

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

Idil – Somali Autism Mom & Advocate