Blog Archives

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 [email protected]. 

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

Alright – so, 1 in 68 U.S children have autism, 1 in 32 Somali American children in Minnesota have autism and boys are more likely to be autistic than girls. These boys become young men of color, mixing that with law enforcement is devastating to think about. Autism is a neuro-developmental disorder that affects a person’s ability to communicate, understand social cues and regulate their behavior.

As a minority autism mom whose child has autism – I constantly think about this. My son is now 15 and still has autism as there is no cure thus far for autism. He doesn’t always understand social cues and may not always follow directions. A police officer may think an autistic individual is being defiant and not listening. An autistic individual may get sensory overload and be overwhelmed by too many verbal directions or even the police car’s lights. There have been few occasions where my son had a behavior in the car and I had to call the police for help. The first time though it was my fault because I didn’t say what kind of help I need it, the state trooper that came pointed his gun at me. After I explained the situation, he was much more nicer and understanding and helped us get into a safe exit as we were on the highway. The consequent times, the police has been positive, helpful and understanding. Nevertheless, the fact that so many of them don’t really know autism or its symptoms is worrisome.

While, I have not heavily advocated for this, I have asked Commissioner of Minn Dept of Public Safety to add funds to their budget for autism training, and she has not. I also asked Mpls to train their police officers about autism and Mayor Hodges has not done this. Mpls City Council member Warsame and State Representative Omar who are both from Somalia and represent large autism families have also not done anything about this.

An African American man recently told me “when police are driving behind me, I don’t feel served or protected”. I thought that was sad yet true.

As I write this – I am saddened that my son had a behavior in the car tonight and I contemplated whether I should call the police or just sit in the highway which was dangerous while he calmed down. No one should have such a thought. If I were white, I would not have to think twice to call the police for help. But I am black and live in Minnesota which sadly does not have a good reputation for equality. If you are white and are reading this, you are thinking when anyone needs help they just call the police, but for a minority person it is not that easy. The history between law enforcement and communities of color is a complex and complicated one.

A few months ago, a reporter from Buzzfeed called me about my advocacy and autism. I remember telling her that I was done advocating but maybe I am not done yet. I really would like to figure out how to effectively advocate about autism and police. How can minority autism families feel comfortable about the police whose job is to protect and serve. I would like minority autism families to feel protected and served by the police. I think through training and perhaps compassion from the police and trust from minority autism families – it is doable.

New York Times op-ed about autism, law enforcement and St. Paul officer who has autistic children.

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

Idil – autism mom and advocate.

Alright – so, Minnesota Autism Center (MAC) which is arguably the biggest ABA therapy agency in Minnesota, and probably the worst in how autism families are treated based on my experience with them and opinion has expanded their fake ABA school program. They have added more kids in their Eagan location. Let’s put this into perspective, this is not a private school because no parent pays one dime for it. It is not a public school because the Minnesota Department of Education does not give them one dime. It is a fake ABA school that is funded by Medicaid through Minnesota Department of Human Services (DHS).

Medicaid does not and should not cover educational services, according to DHS but for some reason – this fake school keeps getting millions of dollars from medical assistance via DHS. Why is DHS doing this and what are they doing about it? In one word – nothing. The why is what puzzles me. Let’s remember DHS goes after minority owned agencies if they sneeze the wrong way, but when it comes to WASP owned agencies, they nap, sleep, ignore, pretend to not see or hear. I wonder why that is. Institutional racism? well – as the saying goes “if it looks like a duck, acts like a duck it is a DUCK”.

I have been trying consistently and persistently to get DHS to treat all autism therapy agencies fairly to no success thus far. Their reasoning for not auditing or looking into the fake MAC school is probably in my opinion and many others in the autism community fake in itself. “we don’t have proof”. But you have an abundant amount of suspicion, so audit this fake school. My favorite other reason from DHS is “it is a complex and complicated issue”. Are you bleeping kidding me. When God forbid, a Somali day care agency does anything wrong, you are on them like white on rice and faster than a New York minute, but for MAC – it is complicated. Come on DHS. We are not buying this fake reason.

According to DHS “Medicaid does not cover services that include or replace academic goals that are otherwise included in the person’s Individual Education Plan (IEP) or Individual Family Service Plan (FSP), as required under the Individual with Disabilities Education Improvement Act of 2004”. This includes math, reading, writing or any educational services that are and should be covered by the child’s education plan.

Nevertheless, these items are exactly what the fake MAC school is teaching. My advice to Commissioner Piper and Assistant Commissioner Wilson – audit this MAC fake school that is being funded by Medicaid when it should not be. Interview current and previous employees who are told to provide education but write medical in their progress notes. Interview families who think they take their children to a free private school that they pay nothing for and are told Medicaid covers education, you know it does not. Visit this fake school and see it for yourself. Treat MAC as you treat all of the Somali day care centers and protect these vulnerable autistic kids and their families.

DHS – this is your responsibility and obligation to protect individuals with disabilities which includes autism.

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

Idil – autism mom and advocate