Blog Archives

Alright – so, I highly encourage every autism parent and provider to use their voice and always be in the know about current EIDBI policies and changes the state wants to make. If we are not at the table, we are on the menu. We need to be vigilant and alert about autism and our children. Recently, DHS sent as required by law comments regarding changes they want to make to EIDBI. Any changes that DHS wants to make to EIDBI usually goes to CMS for review and approval. CMS pays a percentage of this and has to approve the state’s plan amendments. Below are my comments on the proposed changes to EIDBI that I sent.

My name is Idil Abdull, I am an autism mom, retired advocate and an EIDBI provider. I have spoken on numerous occasions, with CMS offices in Chicago and Baltimore about Minnesota Medicaid agency’s inability to be inclusive. The changes Minnesota Department of Human Services (DHS) is requesting as usual have no community or stakeholder input.

They will claim DHS EIDBI advisory council was consulted. Please remember this council has no access to the public, nor do we have access to them. DHS ensures the council meets behind closed doors and we have no ability to communicate with them. In a nutshell, they are used by DHS to justify their racial disparity creating policies and amendments.

I respectfully ask the Centers for Medicare and Medicaid to reject this SPA and ask DHS to ensure public input and collaboration is included. As we all know, Minnesota has some of the worst racial health and access disparities in the country, underhanded tactics like this EIDBI amendment is exactly why such horrible and shameful record exists here.

Furthermore, EIDBI statute 256B.0949, subd 8 (1 and 4) state stakeholder input and collaboration are a must. DHS is failing to follow state law and keeps changing EIDBI policies without any input or collaboration from stakeholders which should include parents, advocates and EIDBI agencies. Sadly, no one in Minnesota holds DHS accountable. I am hoping CMS will or at least ensure bias and conscious or sub-conscious racism does not prevail again.

Sincerely,

Idil Abdull – Somali Autism Mom and Retired Advocate

As usual, the above words do not reflect any candidate, agency, or committee.

Idil Abdull – Somali Autism Mom & Retired Advocate

Alright – so, I am sure you are thinking, Idil defending the Minnesota State Medicaid agency. What the heck, has hell frozen? No, calm down. I think I found another entity that I despise more – Minnesota Reformer. This wanna be news outlet, has been reporting negative and negative about Somali autism community. They are insulting us, making up things, using unverified sources, and just talking nonsense.

They said an anonymous source, so they sell it to us has complained to the state Medicaid agency (DHS) about a Somali autism therapy agency and apparently nothing was done. How primitive.
Let me explain something to you hillbilly writers – there is something called disgruntled employees who fabricate stories out of thin air. If DHS or any agency for that matter investigated every allegation that would be all they do and still would not cover all of it. DHS nor any agency has the resources or the staff to investigate fictional reports from fired or mad employees. That is simply insane and not possible.

The notion that DHS has the resources to do endless investigations is toddler reporting. I suggest you grow up and come to realville. Furthermore, if you did honest and thoughtful reporting, you could ask DHS how many anonymous complaints they get annually, of those what percentage is investigated and of that what percentage is found to be credible complaints. Instead, you find again someone who does not have the guts to come out, somehow and as usual tie to the Somali community who in your hillbilly eyes is bad to the bone then blame DHS for it. How un-journalistic of you.

In my humble opinion, what DHS can do is put a moratorium on approving new EIDBI agencies. Trian the current ones on policies and procedures in a manner that is culturally responsive. This means do not write things to an oral society, they won’t get it. Audit more and provide better quality oversight in all areas of EIDBI agencies to ensure children are learning. Hire and train auditors that reflect the people being served about autism and EIDBI so that they know and understand it better. Get the licensure thing going faster and include CTSS autism therapy agencies to ensure fairness and equity. There is always room for improvement and while I am usually never a fan of DHS, I defend them against the racially profiling and islamophobia MN Reformer. I don’t wanna start saying “DHS is doing a heck of a job” as I do not have access to their internal process but again there is always room for improvement for all of us and if anyone is doing autism therapy for the right reasons – then I support you and stand by and with you.

As usual, the above words do not represent any candidate, agency, or committee.

Idil – Somali Autism Mom & Retired Advocate

Alright – so, Minnesota Reformer has been targeting the Somali community and writing stories that are racially profiling as well as islamophobia. As anyone knows, unless it is about autism, I usually have no idea or even care. Lately, this online news outlet has for some reason decided to talk about Somali autism related issues.

Who the heck is Minnesota Reformer – as I have never heard of them until they wrote about Somali autism few months ago. They are under a non-profit news organization that claims to write about policy and politics. The Reformer was founded by a previous Mpls Tribune reporter Mr. Coolican. From what I understand he is as liberal as Walz. In other words, preach sugar but practice salt. They go after BIPOC communities particularly the Somali community in Minnesota. Why, you ask. Your guess is as good as mine. Maybe to get a bigger audience, they have to write “shocking”. stories that are based on demeaning our community and plant fear in other communities. They claim to be non-partisan and fair. If that is not the biggest oxymoron, then I do not know what is.

Their to go line is Somalis are bad, Somalis are bad, Somalis are bad – well you get the idea.

I and other Somali autism parents have tried to reach out to them to understand why all the hate towards our community. Why divide and use members of our community against each-other, they have refused as it is typical for liberal racists dismissed our olive branch.

What is interesting is they also write about how the GOP politicians are sooooo bad towards Muslims and minorities that they are completely oblivious to their own attitude towards our community.

They manage to always target our community and somehow connect it to bad bad and worse.

First of all, to their article that stated, “they call themselves autism moms”. We ARE Somali Autism Moms and effective current/retired advocates who have advocated for autism therapy for low-income autism families in Minnesota and nationwide.

Second, they cite Dr. Larsson (the crook of all crooks) who stole millions of Medicaid funds as though he is holy. Talk about racism and narcissism.

Third, even though they have or could get data that states the non-minority thieves who have stolen millions from Minnesota Medicaid, they pretend to look at that with a deaf ear and a blind eye. How typical liberal and lovely of them.

Fourth. It is not a crime to drive long to get medical care. Patients do it all the time. I drive my son for 1 and 1/2 hours to a speech therapy clinic that is for only 1/2 hour. I do this because my son gets wonderful therapy, and I would drive to Timbuktu and to the moon on needles on fire to get him therapy and intervention. Oh, and by the way, soooo many non-minority autism families also do this. Of course, when they do it, it is because they care about their children. When we do it, it must be wrong.

Fifth, when you report an xyz person who did xzy wrong and they are not Somali, you only report their name. In other words, you do not write John McCarthy stole millions of Medicaid and all his customers and employees were Irish. Or Mr. Feinstein stole millions in Medicaid and all his customers and employees were teenagers and Jewish. When it is Somali, you are soooo quick to state their ethnicity. Mr. Ali stole millions of Medicaid and all his customers and employees were Somali. There is a name for that, oh yeah, islamophobia and racial profiling. An old tactic that whites used/use to discriminate against BIPOC communities. How original.

Malcolm X is quoted to have said “the media’s the most powerful entity on earth. They have the power to make the innocent guilty and to make the guilty innocent, and that’s power. Because they control the minds of the masses.” Creating a world that is safe, just, and equitable for all requires us to interrogate every system and structure that exists, including our mass media. There is a bias in what gets reported and how the coverage is being reported. Words are powerful and the messages we consume from the media are often overlooked. We must be vigilant about calling out these inequities because of the direct impact that the media has in shaping our perceptions. The Reformer’s bias reporting has hurtful and heartbreaking consequences for our community. Sadly, how blacks and other communities of color are reported in the media is nothing new.

Again, I ask what is your beef with the Somali community? Why all this much hate? Why the double standard?

The above words do not reflect any candidate, agency, or committee and are solely my opinions.

Idil – Somali Autism Mom & Retired Advocate

Alright – so, if you know me or read my blog you understand my distaste for the current DHS commissioner and all her leadership team. They have done nothing about or for autism for years now. They do not train anyone including families and providers. They do not explain anything thoughtfully nor comprehensively. Then they have the audacity to complain to the media about people not doing what they are supposed to do. My favorite – oh wow the amount of funds has increased. Of course, village idiots when more children are being served then of course the funds will increase. That is how things work. First, train families and providers. Now, they have put Ms. Merz in charge and promoted her to be assistant commissioner in the disability area. What the heck?

Merz knows nothing about autism, EIDBI or any policy in my humble opinion. I think she is a privileged, white liberal woman who is entitled and protected. I have never seen her testify cohesively even when she took over Alex’s position. If you knew Alex, then you are lucky. Alex knew disability policies better than most. I remember when she first came to DHS from Hennepin County. She was humble, kind and always in the corner of people with autism and all disabilities.

Merz is clueless, egotistic, arrogant, out of touch, privileged, and entitled who thinks wrong and never does anything for autism right. One would ask why they promoted her to a higher position. Well – one name – Harpstead. Arguably, the worst and most racist DHS commissioner I have ever seen. Usually, DHS is never good even if the commissioner is, simply because middle management who never leave are the female version of George Wallace. But usually, if the commissioner is smart, and cares, she/he can direct lower-level staff to do better.

Harpstead and Merz are two peas in a pod. Well, actually at least Harpstead can fake testimonies and testify in the state human services committees. Merz looks nervous, cannot connect two sentences correctly and hardly testifies. Remember the number of times Alex would explain and testify at the state legislature about all things’ disability. Not Merz. She is yuk and yuky in my opinion.

They say all good things come to an end. I am hoping all bad things come to an end. I am hoping Walz’s term as a governor will end and we will get a new commissioner who then God willing will hire competent assistant commissioners. I for one cannot wait for Harpstead and Merz to go bye bye.

It seems that the new disability director who replaced Merz is Heidi Hamilton (HH). In the interest of fairness, which I cannot say the same for DHS in general, HH knows about statutes, policy, and disability almost as much as Alex did. After all Alex trained HH. From what I remember in my days at the State legislature, HH was quiet, neutral when needed to be, told facts when asked, and did not take sides. In terms of equity and inclusion which is a buzz word for most liberals who never mean it, HH did not care or understood it.

This is an election year folks, how we vote directly reflects who oversees so many things including DHS. Granted the One Minn Hoax Gov is not on the ballot, but the house is. We need to learn how to vote smarter and better. We must connect how we are treated and supported to our votes. Otherwise, our votes are Lax Ba’caad Lagu Lisay.

In the house: We need to vote out Rep. Kim Hicks who has worked behind the scenes against Somali autism families more than any other legislator. I think she is even worse than Rep. Kim Norton (current Rochester Mayor). If you know history then you remember – Norton was unapologetically against low-income autism families and MA paying for ABA therapy. They are both from Rochester and that county is as bad as it gets. Plus, Hicks campaigns against any Somali autism research. The nerve of her. I mean really. What the heck?

Autism in our community is 1 in 16. When I first started advocating – it was 1 in 32. How long can we sleep and be screwed with while our children get autism like it was candy. There are Somali families with two, three and even four children with autism. That should shock and anger all of us.

Something is happening in Minnesota. What if this is another modernized Tuskegee experiment? Think about it. Our teenagers who were lucky enough to not get an autism diagnosis are dying from drugs or in jail and our children are disproportionately being diagnosed with a disability. No way this is normal.

Qofkii walaalkiis loo xiiroow, adna soo qoyso. Ha is oran autism waxba igama galin.

The above words do not represent any candidate, agency, or committee and are solely my opinion based on my experience.

Idil – Somali Autism Mom & Retired Advocate

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