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Alright – so, I have written about this issue extensively and have advocated for it in both the state and federal. Minnesota has passed an awesome law that will address the need to train and educate law enforcement in a manner that is culturally responsive. First, I want to give credit to the many many people in the autism community who fought like hell to pass this law. Noah M, Autism Soc of Minn, and others. Thanks for your relentless advocacy.

I first joined this effort years ago when my son had a behavior in the car in the middle of the highway.  I called 911 and the state trooper that came pointed a gun at us. Let’s digest this, I am from Somalia, arguably the most dangerous country in the world and I have never had a gun pointed at me. I had to then stay calm and tell the officer my son has autism and he is having a behavior. And that I need him to help me get out of the highway and into a safe area. After I explained this to the state trooper, he was extremely supportive and helpful. Then I asked him if he has had any autism training. He replied not much maybe a few minutes with all of the other disability training which is not even that much.

So then as I have always done, I have put on my advocacy hat and tried to figure out what can I do so that the next autism family does not endure such a scary moment. First, I called the Department of Public Safety Commissioner Mona D’s office and tried to find out their policies for training state troopers about autism. Her office was very responsive and after I gathered data and facts, I made an appointment with their training person (s). They were also very receptive and helpful. After several meetings and email exchanges, they said around 15 min or so can be added to the hundreds of state troopers that get trained annually.

Then I contacted the city I live and Mpls mayors to see if they can also train their officers about autism and how to help if they are called for help. My wonderful case manager for my son and I met with the chief of policy in where I live. I have to say, I loved meeting this guy. He too said they can add autism training to their procedures. And, wait for it… the best part…. drum roll please…, he watched the young and the restless and the Kardashians. I mean a police chief who is down-to-earth and approachable. It does not get better than that. Hold your horses – all mayors and police chiefs are not created equal, I also met with Mpls mayor Jacob F. Keep in mind, I knew this guy way before he was a hotshot mayor and he was at least reasonable. No more, when we met with him, he promised nothing and offered even less. He was distant and simply took our votes for granted.

Then I met the chair of the public safety in MN House Rep. M in an education advocacy meeting and started asking if a statewide bill that ensures autism training can be done because I can’t keep asking one city at a time as that will take forever and some of them may say no like Mpls did. By this time, others such as Noah and others were heavily advocating at the state capitol for this, so I joined. Finally, the law passed and was sent to the Minn Peace Officers committee. I called them to see if they can make sure and add cultural perspectives since all behaviors are embedded in their culture. Again, I was met with such a supportive and kind manner by their chair who is the chief of police in Mendota Heights. Now, it is out and it has been sent to me. It simply looks fantastic. It is inclusive, thoughtful, comprehensive, and really good.

I think the next step is to start this with the selected groups/agencies who will do the training and support law enforcement agencies.

You see if we see the glass as half full and figure out how to change our experiences into something usually some kind of a policy that helps the autism family behind us – then we all succeed.

Here is the statute if you want to read it. The POST came up with more comprehensive ideas of what should be included in the training.

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

Idil – Somali Autism Mom & Advocate

I have sent the below letter to IACC. I am hopeful the committee will address many of these issues for all autism families.

Dear IACC Chair and Members, 

My name is Idil Abdull, I am a Somali Autism Mom and a previous member at IACC. First, I want to thank you all for what you have done and continue to do for children and adults with autism and their families. I especially want to thank Dr. Susan Daniels whom I respect and admire more than I can express. I am grateful that the current US. HHS Secretary has appointed arguably the most diverse public members to IACC. I hope the fruits of your labor are fruitful to all autistic individuals and families.

I write to you today to raise awareness when children with autism become adults with autism. As you know the support, resources, and services for adults with autism are almost non-existence. While it is essential to have early interventions with the hope that children who receive early intervention need fewer services and support; there must be equal support and services for adults with autism. As you are aware autism has increased per the latest ADDM numbers.

I would like to suggest the following friendly suggestions or at least raise awareness. 

1. Expanding research for adults with autism and their needs such as housing, employment, and higher education.
2. Recommending more research for medications that can help adults and maybe even children with autism with their challenges and symptoms.
3. CMS to help states with ensuring home and environmental safety measures are good with concrete federal guidelines that must be followed to ensure the safety and well-being of adults with autism.
4. Asking the U.S Dept of Education to pressure Congress to fully fund special education.
5. Asking or at least adding IACC’s recommendations that IDEA’s suspension rules are amended; currently, children with disabilities are suspended similar to students without disabilities. Autism is a behavior disorder and we can not allow our children to be suspended for their behaviors as that is part of their disability. There must a provision in the IDEA law that ensures parents and the IEP team can state in the child’s education plan if he/she understands the code of conduct and suspension. In other words, if the student is profoundly autistic and does not comprehend cause/effect then kicking that student out of school is not helpful, and it must be notated in his/her IEP.
6. Having diverse autism individuals participate in all autism research by adding it as a requirement in the grant/funding application process.
7. More research recommendations and funding for non-verbal autism as these individuals have higher needs.
8. Asking HRSA to ensure the LEND programs attract, keep, and nurture minority fellows into the autism field of speech, ABA, OT, social workers, researchers, etc.
9. Addressing the pandemic and autism so that families, educators, and others have some guidance from the IACC and federal agencies in this committee. This includes vaccine equity and making the vaccines available to all autism communities, particularly communities of color.
10. Autism group homes – as parents age, some of our children will need to live in a group home. What and how can IACC assist states with this.

I thank you much for your time and for addressing the above issues, and I look forward to your solutions.

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

Idil – Somali Autism Mom

Alright – so, the Minnesota Department of Human Services (DHS) is supposed to be in charge and have cohesive policies and guidelines for all things human services. EAA – what the heck is it and why does it matter to children with autism and their families? As we know, autism is a developmental disability; one of the main challenges is behavior. Most not all children with autism are unable to regulate their behaviors. Hence, the need for behavior therapy. Most, not all children also lack safety skills. When our children are young, we (parents and caregivers) can usually handle their behaviors and safety needs. However, as children become young adults, we need to safely modify their homes and environment. That is when we (at least me) learn about EAA.

Remember years ago when we started advocating about ABA therapy and how MN DHS had zero rules, statute, policy, or any guidance for ABA providers. Actually, DHS just denied they even paid ABA therapy. They did – but only for wealthier TEFRA families. Eventually, we won with simple and persistent advocacy.

At any rate, I thought that was the wild wild west. Well, I take that back. DHS and EAA agencies are the real wild wild west. This time – it is different. DHS does not deny paying for EAA. They just have no concrete nor cohesive fair policies that ensure the individual with autism and/or other disabilities’ safety needs are met. These EAA’s make the ABA agencies look like mother Teresa. I mean, they are as cold as Minnesota snow, clueless as Rose from the Golden Girls, and arrogant as heck. It can take months even years to finish any safety project which defeats the purpose of safety if a person with a disability has to wait years. As much as I loathe most of these EAA agencies, I do not blame them for their boorish behaviors. There are 87 counties in Minnesota and essentially 87 EAA rules. The problem is DHS and it is inability to take charge by creating thoughtful policies with statutory teeth that everyone follows with timeframes, cost-effective measures, and most of all are built on a person-centered and inclusivity foundation. Is that too much to ask? I say no.

So, how does this whole EAA process work? who is in charge? where does the funding come from? and what can we (parents and caregivers) do about it so that it does what it is meant to do which is to ensure the safety and well-being of individuals with autism and other disabilities are met and are a priority?

Stay tuned for yet another advocacy journey I am about to embark on.  Though this time it will be different and perhaps more difficult because DHS has so many new leadership teams; most of whom I am not fond of. Seriously, I would like to retire and not keep going to the state capitol. It would be nice if the human services department simply did its job for people with disabilities without causing stress for parents.

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

Idil – Somali Autism Mom & Advocate

Alright – so, what the heck is the BACB board? who is on it? why does it matter to autism families and why the heck should we care?

Lots of questions and so many answers. Behavior Analysis Certification Board (BACB) is where Applied Behavior Analysis (ABA) therapists get certified. It has all white-board members. In fact, I don’t remember ever being diverse nor reflecting the autism community. Why should we care? such a good question. Let me back up for a minute and explain more about ABA therapy. It is arguably one of the most (if not the most) effective autism therapy there is today. It is a powerful method that teaches children and adults with autism functional life-long skills that enhance their quality of life and enables them to live as productive members of society.

I am a huge fan of ABA, so much so that I went back to school (at age 90) and got a master’s degree in it. I use this with my own son every day to teach and help him. It does wonders for behaviors, language, social, and self-care skills to mention a few.

We know that autism is high in our Somali kids in Minnesota. We also know that autism is high in this country and children of color get diagnosed later. All behaviors are embedded in their culture. Thus, the importance to have the board that oversees this to reflect the people it is supposed to serve. Now, ABA doesn’t just help autism families. You can actually use ABA therapy in companies, hospitals, daycare centers, and so many other areas. But, I only care and understand about autism, so I will concentrate on that in this blog.

At any rate, not only is the board for this wonderful therapy non-minority – but the few people there have been sitting in these seats for a long time. I think it is time to replace all of these vanilla board members with people who are diverse, kind, compassionate, and most of all approachable. As though that wasn’t bad enough, I have only seen less than five diverse certified ABA therapists. This can not simply be. The rules and guidelines of this all vanilla board must reflect our diverse communities and our families – full stop. They must be person-centered, family-focused, and culturally responsive.

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

Idil – Somali Autism Mom

Alright – so, The holidays are around the corner which is when families travel and take vacations. Many families who have children with autism avoid flying because they are unsure how their children will respond. Often autism families don’t go on vacations fear of travelling and how their children will react at the airport and in the airline. I remember once travelling with my son to Los Angeles, it was too overwhelming for him. I wish I knew about this program because I would’ve eased him into flying until he was comfortable. Often children with autism need to see things and places more than once to feel comfortable. To ease this anxiety and stress associated with an airport visit and flying, the Metropolitan Airports Commission and others have teamed up to create the Navigating MSP Airport. The program includes monthly events, all designed specifically for individuals with autism, that guide families through the steps of an airport visit, from walking in the door to finding their seats on a plane.

During the Navigating MSP Airport event, families will have the opportunity to familiarize themselves with airport and travel procedures. Children will practice entering the airport, obtain a security pass, go through screening at a TSA security checkpoint and walk through the airport to a boarding gate. To culminate their experience, children and their families will board an aircraft and find their seats. Please note that the aircraft will remain on the ground.

In addition to preparing families for a positive travel experience, the Navigating MSP Airport program also will provide a valuable training and awareness opportunity for the airport staff, airline and TSA personnel to learn how to accommodate children with autism and other disabilities.

Families are invited to participate in any of the Navigating MSP Airport event sessions, scheduled for the first Saturday of every month for a fun and practice run while learning from airport personnel what works and what doesn’t work to make travelling experience efficient and less stressful. I think it is very important to take children with autism to vacations and exciting places. Always let the airline crew know ahead of your child’s diagnoses and needs. Ask them to let you sit near the front so you can get in last and get out first to avoid sensory overload when everyone stands in the airline. In order for our kids to be integrated into their community and society, we must take them everywhere we would typical children. It will take patience and practice which are two qualities autism parents have. Even small steps such as taking our kids to the malls or grocery stores are a good start.

Click here for more information. Additionally, TSA Cares can help children who may get overwhelmed with airport noise and crowds. Call them to find more information.

Above words do not reflect any candidate, agency or committee.

Idil – Autism Mom

Alright – so, Sen. Abeler whose Minnesota Autism Task Force legislation he wrote the last session did not pass because it was in a big unrelated bill that Governor Dayton vetoed came up with a different plan – an autism council working group.

He announced it in his committee mid-October and appointed three Caucasian members to select the remaining members. No person of color was part of the selecting committee. Already a bad start.

The three selected are Jean Bender who has been in almost every committee in Minnesota from the previous autism task force to being a member of Arc and Autism Society of Minnesota. In fact, Jean bounces from one mainstream agency to another. She has a child with autism.

When she and I served in a previous autism task committee, Jean always voted against equality. In my humble little opinion, she is arrogant, charming, passive-aggressive and polite. I remember once she and the current chair of the Bloomington Public Schools – Dawn S took off the Somali autism agency which I was a part of from the task force – their reason – wait for it……pls wait…..it is so Minnesota Nice!

They said – well Idil, you don’t speak for every Somali autism parent. My response was simply – do you speak for every white autism parent in Minnesota. Then save your useless opinion. At any rate, the fact that Abeler would pick her is worrisome and concerning.

It is also worrisome Abeler who knew from the get-go what our fight was always about would write a legislation that would have any selective and discriminatory words such as anyone who served in the 2011 autism task force would not serve in the current one which would’ve eliminated Jean, Brad T and others. I am deeply disappointed in Sen. Abeler whom I consider a good friend and almost like a brother because he and I have been around the autism block.

The second person that Abeler picked is Wayne R who also has a son with autism. In my humble little opinion, he is not too bad unless of course, you are a parent who does not believe vaccines cause autism. Then folks like Wayne are mean-spirited towards other autism parents. In fact, he and his anti-vaccine group have used, manipulated and divided Somali autism parents.

The last and third person is Sheryl Grassie whom I don’t know well and don’t have an opinion on. Actually, update on this. I met Ms Grassie after she reached out to me back a few years ago when she was advocating for an autism residential housing which I was not able to help her with because I did not think it related to our community culturally. Oh boy, she has not changed. Still as cocky as she was back then is what I remember.

My hope was that Sen. Abeler’s first picks would reflect Minnesota’s autism population, but they are as white as vanilla. I am surprised at Abeler’s move as this is not usually like him.

Below is what Abeler’s language is for this so-called autism council. I for one have zero desire to be part of it but I will blog about it and update what they do or don’t do.

Click here.

Above words do not reflect any candidate, agency or committee.

Idil – Autism Mom

Alright – so, Sen. Abeler wants to appoint an autism working group. I am not sure what they will need to produce. But according to Abeler, people can apply with his office and he has appointed three people thus far. He did not tell me who those three are. Abeler is the chair of Minnesota Senate for Human Services Reform Finance and Policy Committee. This is being introduced today in his committee and was just announced late last night which is not unusual but not fair either because it does not give autism folks especially parents time to go to the committee.

I wanted to testify but the committee administrator Larissa told they are not taking public testimony which I think is also unfair because if it is a public council then the public should have a chance to speak about it. At any rate, I just sent below email to the chair and committee members. I encourage autism parents and professionals to apply and email it to sen.jim.abeler@senate.mn. 

Dear Mr. Chair and Committee Members,

My name is Idil Abdull and I have a 16-year old son with autism.

First, I would like to thank the chair – Sen. Abeler who has been a friend to the autism community in Minnesota for years before it was hip to be an autism friend.

As you may know, autism is extremely high in the Somali community of Minnesota for reasons unknown because no one has done any research to find out. Autism is 1 in 59 nationwide and 1 in 26 Somali children born in Minnesota. This is insane and unless we find out why and help these kids – there will be insurmountable consequences for our state. 

I respectfully ask that you appoint a diverse group from various communities including Somalis, Hispanic, Hmong, Caucasian and Native American autism parents whose children are different ages from toddler to adult to get different views and perspectives. I also hope you appoint various researchers from different universities and entities, not just U of MN, individuals with autism, public teachers, community advocates, ABA therapy providers, speech/OT therapy providers, EIBDI providers as well as someone from DEED, MDE, DHS, MDH and county association. 

In other words, it should be a working group that represents and reflects Minnesota autism communities fairly and adequately. 

Once again, thanks so much for all that you do for individuals with autism and their families!

Alright – so, autism is only getting higher and higher. The ADDM numbers from CDC keep growing, but no one in CDC, NIH or any state health department are alarmed. Autism parents are told the numbers are higher because we are getting better at diagnosing. That may be true for autistic individuals who are verbal and may have some social delays, but for the Somali community better diagnosis ain’t it. Somalis are an oral society, yet our children with autism are mostly nonverbal. This is not normal. Minnesota Department of Health (MDH) also known as the do nothing health agency has zero desire to find out why it is high in our children and why our children are nonverbal.

I remember when Gov Dayton was running for office, he made so many statements about autism. He said he will look into why it was high in our community. He did not. His first health commissioner said he will look into it, he did not. So many politicians especially DFLers said they will look into it just to get our votes, they did not. In fact, the last commissioner that looked into autism research in the Somali community was Dr. Magnan who worked for a republican governor – Pawlenty. The last autism research from the state legislature was from Sen. Abeler and Sen Hann – both republicans. In the interest of fairness, the last federal autism research funding in the Somali community was from NIH, NIEH, NIMH under President Obama and of course was initiated by previous director of NIMH Dr. Insel (by far my fav autism researcher), and Dr. Daniels who is the current director of NIMH’s office of autism research, and a wonderful human being.

It is an election year again, and Minnesota Governor candidates in the DFL side – Murphy who lost and good riddance always voted against autism in any community including EIBDI and Minnesota Autism Task Force. Candidate Johnson seemed to care the last time he was running, not so much this time. Candidate Walz says all the right things, but I have learned to not always believe what a politician says during campaigns.

All I ask of autism parents and families is vote wisely, vote based on policy not politics. Policies drive everything. We as autism parents need to know what causes autism for our children and for the sake of future children. Did you know that irrespective of what state health departments do or don’t do – their funding is always the same. Think about it. Why would MDH do anything if there is no incentive or consequences. This useless policy can be changed by congress. Who we put in office can change it but we have to negotiate and bargain with our votes before they win. University of Minnesota’s ICI department headed by Dr. Hewitt also known as Dr. Headache is in charge of Minnesota’s autism prevalence numbers which they told us autism is 1 in 26 (1 in 59 nationwide) for the Somali community. As usual, Dr. Headache could care less the impact such high numbers have on real children and real families. How does ICI get funded by state and federal funding. Who is in charge of state and federal agencies – those that we elect. Vote wisely.

Above words do not reflect any candidate, agency or committee.

Idil – Autism Mom

Alright – so, Minnesota Department of Human Services (DHS) held a meeting with autism therapy providers and few autism parents last week. DHS wants to propose changes to the existing autism intervention statute that governs early intensive behavior and developmental intervention (EIBDI).

I think this is a good idea. Some of the proposed changes are the qualifications for level one therapist. Other changes are agency responsibilities and parent rights. According to the Minnesota Department of Education (MDE), there are over eighteen thousand children with autism. Many of those are not getting any autism therapy interventions and we need to have the capacity to help these kids and their families.

I mostly agree with the changes DHS wants to make. I also agree with their parent rights proposal. I would just add where the family can go to appeal if they disagree with the provider’s treatment plan. I would also like to see DHS engage more with families and help them understand their rights and responsibilities. I would like DHS to ensure providers understand they can’t just discharge the child for no reason. There must be a reason with data and facts, the family must be part of their child’s clinical team as equal partners and there must be a transitional plan in place for the child.

In other words, we don’t want these blood sucking and greedy providers (not all of them) to just discharge kids because they feel like it. The appeal process must be clear and easy to understand by all parents including minority families or those who may not understand the legal lingo of the appeal process within DHS. As an autism mom who used DHS’ appeal process – I strongly recommend DHS help parents learn and understand this complex system.

I have seen some autism therapy providers discharge children who were five years old and said the child was too old, I have seen kids discharged because they were nonverbal, lived in poor neighborhoods, the parent asked too many questions – yada and more stupid yada reasons.

I have seen DHS issue corrective action against some of those providers telling them they were wrong and violated Minn statute that states person-centered and family friendly services. I have seen the Minn Disability Law Center and the Minn Ombudsman’s office defend autism families who have been screwed by autism therapy providers. I really think DHS needs to be a little less provider friendly and a lot more child/family friendly. After all it is the child and their family who need the services and treatments.

Another area where folks had a lot to say was DHS’ new online CMDE and ITP forms. DHS changed this end of last year without any parent/provider and stakeholder input. Obviously this was not a good move and we complained to the Centers for Medicare and Medicaid (CMS) who pays half of EIBDI services. Additionally, the EIBDI statute clearly states DHS needs to engage with stakeholders before it makes changes. Additionally, it put extra steps that many low income autism families would not be able to have such as having access to the internet. Not all autism families have access to the internet and the Medicaid agency can not demand that. We have since then negotiated a more appropriate and doable process.

Overall, I think DHS autism division is getting better in serving children with autism and their families. They are trying to be more diverse, translating their services in various languages, and being in compliance with LEP federal law. Their staff are not cocky anymore and are actually walking on the ground. They have a new supervisor who I think is simply fantastic.

Here is the parent rights proposal and I would urge any autism parent/family to send their comments to DHS because if we don’t speak for our children no one else will.

Above words do not represent any candidate, agency or committee.

Idil – Autism Mom

Alright so, Minnesota Department of Human Services (DHS) is headed by probably one my least favorite commissioners  Piper – well maybe MDH’s Ehlinger takes that price. Ok, my second least fav. At any rate, DHS under Piper keeps getting worse and worse. Let’s start with their autism policy lead – NB.

Have you ever heard of privileged WASP? ok, so Polling at MDH takes that price. Ok – well maybe the female version of privileged WASP would be NB at DHS. I have seen manikin’s with more empathy and compassion. But that is not even the problem.

I worked extremely hard to get Minnesota’s early intensive behavioral and developmental intervention (EIBDI) to be passed by the Minnesota state legislature in 2013 then worked even harder for The Centers for Medicare and Medicaid Services to approve it. One of the requirements was that DHS would engage with autism community stakeholders before it made any changes to EIBDI or before it wrote any policies involving EIBDI. Well – DHS policy lead, NB throws that out of the window with Piper’s blessing and Wilson’s blind eye. I have seen Piper fire people from DHS because they were not DFL enough as though DHS is the Minn Dept of Democrats. I have seen Piper diminish the responsibilities of really amazing folks at DHS who has helped us so much before, yet autism policy lead who in my opinion is as cold as Minn ice, as ignorant as Sarah Palin and as cruel as Clarence Thomas is still there. Who suffers in all of this chaotic environment? autistic children and their families as well as small agencies that are providing autism therapy.

So what did DHS change and did not consult with anyone? Well how comprehensive autism evaluations are done, how the treatment plan is processed and submitted, how parents have access to this or don’t have access to it, and so much more. Counting the days when Piper is no longer at DHS – that is in November when Governor Dayton’s term ends and god willing a different governor wins, preferably not Liebling or Murphy. That is another day and another blog.

The person that I am most disappointed with is Alex B who is in charge of DHS’ disability division. Alex knows right from wrong and has been around the block in autism issue including autism in the Somali community. But as the saying goes, you can lead horse to water but you can’t make him drink it. I am also disappointed with Asst Commissioner Claire W who on the surface seems genuine but still so much BS happens under her leadership and she allows it.

Above words do no reflect any committee, agency or candidate.

Idil – Autism Mom and Advocate