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Alright – so, Ms. Adams who works at Minnesota Autism Center (MAC) in their Mankato location was charged by the Mankato police for failing to report child abuse to the authorities as required. The case is now done and she only got one year probation meaning as long as she does not violate the terms of the probation or repeat similar violation, her record will not reflect this crime and won’t even have this incident. I guess that is better than nothing. I think Katie Strong who is the licensed mental health professional there above Ms. Adams should’ve been charged as well.

There are many children in MAC centers that are sadly abused, restrained excessively and neglected, but no one has been able to do anything about it thus far. MAC is funded by the Minnesota Department of Human Services (DHS). Last year alone, MAC received $21,759,357 from DHS for ABA therapy. Yet, the state Medicaid agency whose responsibility is to assure individuals that are disabled, poor or elderly are safe keeps failing here.

DHS has no mechanism to assure our kids with ASD in MAC centers are safe and free from neglect and abuse. I mean zero, zilch and zap mechanism. This is soooo sad to me as an advocate but more importantly as an autism mom. Abuse is never ok for anyone, and so many of these kids can’t tell us what happened or defend themselves are clearly being abused at MAC centers, yet we have no way to protect them.

Shame on DHS for failing our kids with ASD yet again.

I know this is now becoming a broken record statement and I hate to use the race card every time, I just can’t help but think if this was a Somali child care center that was abusing or allowing abuse of children – what would DHS do? …think about it.

DHS would cry from every river to make sure those kids were protected. Yet when Ron Carey and Kathryn Marshall at MAC do it, DHS sleeps and pretends to be blind. I wonder why?

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

Idil – Autism Mom & Advocate

Alright – so, Minnesota had a primary election Tuesday and there were big winners and losers. Let’s just start with the biggest winner. Ilhan Omar from district 60B which has the largest Somalis in Minneapolis won beating a fellow Somali – Noor and Rep Kahn.

Rep Kahn represented this district which includes parts of the University of Minnesota for decades – over 40 years. I think that is before Ms. Omar was even born. Kahn has been no friend to us or autism families in this district and to those that are low income or minority autism families. She has always voted for bills and legislations that hurt our equal access goals and leveling autism therapy opportunities. In fact, she is a co-sponsor of a current bill – HF 3289 which wants unlimited and unchecked autism therapy coverage for wealthier autism families which will most likely make therapy providers not take Medicaid autistic kids and will eventually force DHS to decrease the reimbursement rate for Medicaid autism therapy coverage. I will explain more about this bill in a later post.

I for one am glad that Kahn lost, but the icing is that she lost to a woman of color. This district has one of the highest economic, health and education gaps in the state and even in the nation for people of color and Kahn has mostly ignored those constituents. So, Rep Kahn – good bye and good riddance.

Ilhan will face another Somali in November, Askar who is representing the Republican party. Think about this for a minute – two Somali Americans running in the same district. In other words, no matter who wins, our community will win. If that is not assimilation then I don’t know what is. Congrats to Ilhan and Askar and good luck to you both!

Another amazing loss was Rep. Mullery who also was no friend to minority autism families. He lost to a minority person as well. Really folks, does it get better than this. I hope this is a clear message and a lesson to those at the state capitol if you don’t represent all of your constituents – someone will come along and vote you out.

Couple of wins that I am not all that thrilled about are Sen. Hayden who usually ignores most of our community’s needs including autism and mostly marches to Sen. Bakk’s beat. And, Rep. Moran who is usually silent and hardly fights for our issues especially if God forbid we have different opinions or views. There is always next election.

A sad loss to the autism community was Sen. Sean Nienow who has been a true friend to us and our issues. I will miss him and hope he runs again next time. Sen. Nienow had this ability of speaking from the heart about legislations and relating it to his personal story. Even if he didn’t support a particular bill or legislation we wanted, he always explained his position so well that we could agree to disagree respectfully. There was never any bias or bull from him.

What does this all mean for autism? well in our community and those that live in district 60B, I think mostly this is good news. I am confident that Ilhan or Askar will truly represent everyone including autism families in a fair and transparent manner.

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

Idil – Autism Mom & Advocate

Alright – so, after what happened in North Miami few weeks ago, I think most autism parents if not all are uneasy about law enforcement. The one thing that would have prevented what happened in North Miami is clearly autism training for law enforcement. As I have said in previous posts, there are no nationwide, federal or state requirements for autism training in law enforcement. There lies the problem because unless it is required and part of  law enforcement’s training, autism will remain a mystery to most officers.

I have contacted many cities in Minnesota and some in the country to get a feel of their autism training. Most don’t have any, some have a little here and there under their crises management. Some have few minutes of drive-by where they cover all mental health and disabilities. Minnesota is one of those. There is not one city that can say we have the autism training down and understand what autism is, and how to de-escalate an autistic person in distress. Minnesota which has about 600 state troopers does not have a good thoughtful and comprehensive autism training. They have few minutes where they mention autism among other disabilities and mental health conditions. North Miami also did not have any autism training for their police and I don’t think Florida has any for their state highway patrol officers.

From what I understand, few of North Miami’s city council members held community meetings asking about autism training. It has been suggested that they will now provide such training. It is too bad something bad had to happen first. I am really impressed by city’s community meetings and how everyone voiced their opinion and take. I don’t think I have ever seen such venue in Minnesota. You know the land of 10,000 racial disparities.

The Miami Police Union President Mr. John Rivera sent me an email  stating they are open to autism training. Mr. Rivera also welcomes legislation requiring autism training which I think is always the best way to go. Personally, I prefer to advocate through legislation and policy change because that brings the best change. We  need a federal and Minn state legislation requiring autism training. As anyone knows, any state or federal legislation can take a while unless there is a legislator that is really interested is or is personally impacted. I think there is one legislator in Minn House, and I am blanking on his name now, but maybe I will try to start there then try to convince the house/senate chairs of public safety committees to support it. On the other hand, going to advocate at the Minnesota Capitol buildings is not all that fun – I must say. I remember when I advocated for the autism therapy legislation, I would take two Tylenol before and two Tylenol after I left there. We could advocate city to city, but that will take forever.

I am extremely disappointed in Autism Society of America’s inability to use the North Miami incident as a reason to push a federal legislation that would require law enforcement training. Equally disappointing is Autism Speaks’ position on this issue. One in 68 kids in the U.S have autism. These children will become teens and adults which means since there is no cure for autism, law enforcement may be called to help.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, in my last blog post, I wrote without checking all of the facts and reasons behind Rep Cornish’s remarks about the climate of our state and the nation’s racial disparity, in particular the relationship or lack of relationship between the police and minority communities.

Now, in retrospect – this is not an area that I understand or follow all that well. Only what I see in the news here and there. Of course, as a Black woman, it bothers me as it does many others what I see on the news. At any rate, I heard back from many legislators in the state, many of whom were mad. Some said “what is my problem since they have helped me and our community with autism related legislations”. Some said “what solutions would  I suggest”. Some said ” I should stay focused on what I know and not get involved in every issue”. I agree with everyone that contacted me, more importantly I appreciate every legislator that has helped us write, push and vote in so many autism bills and legislations that have passed in Minnesota for the past few years. I also thank and appreciate every congressman/woman/staff and federal personnel that also helped pushed autism issues at the federal level.

Mostly, I want to thank Rep. Cornish for making me understand what he meant. I can understand where he is coming from. I understand that BCA is under DPS which is under Gov. Dayton and how one can assume their work could be less objective. I can also understand where Gov. Dayton was coming from. Our state sadly had some of the worst racial disparities in the country, and while I don’t read minds – Gov. Dayton and Commissioner of DPS, Dohman’s body language seemed as though they really care and what has happened bothers them.

Below is what Rep. Cornish said to me.

I think I will take folks advice and stay out of any issues outside of autism.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, if you have a child with autism spectrum disorder (ASD) then you probably heard when Disney changed their policy of following American’s with Disabilities Act (ADA). Disney used to have a guest pass card for individuals with disabilities including ASD. Often many kiddos with ASD can’t tolerate waiting in line or get overwhelmed by the long lines at Disney. The Guest Pass card helped ease some of the anxiety for these kiddos.

Then some heartless vacationers that did not have any disability started abusing this and Disney took a knee-jerk action and eliminated the guest pass card. Shortly after several autism families sued Disney for violating the ADA.

Then back in April (autism month mind you) some judge whose children probably don’t have a disability took Disney’s side and stated they did not violate the ADA. Then last month the Civil Rights Commission finds Disney did discriminate against individuals with disabilities in particular autism.

What does this all mean. From someone who sued an ABA provider agency for discrimination – (Lovaas who I think are racist pigs), it all depends on who the judge is and how they interpret the law which is often based on their views and perspective.

How can one area see discrimination and another does not? It is in the eyes of the beholder. The law is never clear – it is how one interprets. Sadly, too often courts side with big agencies and big corporations.

What does this mean and how do we change it? Well – in my humble opinion, it all comes down to our votes. I know you are thinking, now what now. Think about it. Who the heck appoints those judges. The governor for state judges and the president for federal judges and who the heck votes for governors and presidents. We the people do. Sadly, but not surprisingly, minority communities never use their voting power as a negotiating tool like other communities and women do. Please vote wisely and hold politicians accountable who appoint these judges. Sometimes judges run for elections and no one in our communities ever  follows those elections. Being reactive accomplishes nothing, we must be proactive and use our votes to change our lives for the better.

Click here and here for the results of these cases against Disney by ASD families.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Two time Oscar winner Robert De Niro who has an 18 year old son with autism pulled a movie directed by Dr. Andrew Wakefield from his prestigious film festival after he received the usual criticism from big government agencies, big pharma companies and all of their media friends. Vaxxed – from cover up to catastrophe is a documentary film that sort of linked vaccines to autism. It talks about Dr. William Thompson, the so called CDC whistleblower who never really came out to blow anything, prove or disprove anything.

I personally like Dr. Wakefield. I think he is charming, cute (oh please – take your mind out of the gutter), and really cares about kids with autism and their families. I also like and respect many of the CDC researchers that Dr. Thompson is talking about. I honestly don’t believe Dr. Thompson especially when he says CDC hid data that stated African American boys were more likely to get autism when vaccinated. There is no way in hell that Dr. Allsopp nor Dr. Boyle and I know both of them personally and respect more than words can express would ever allow such deceit. In fact, the study done here in Minnesota – the rate of autism in African American (non Somali) children was much lower than Caucasian and Somali kids. Plus, if this guy has any guts then he needs to come out and explain what the heck he means instead of hiding behind CDC walls and the statement posted in his lawyer’s site.

Nevertheless, something is causing autism rate to keep going higher every year and we can’t just say “well we know it is not the vaccines, we don’t know what else it is and we are not going to look at anything else”. For example, Somali American families are extremely hesitant to vaccinate their children fear of autism. I recently asked a new father why he didn’t vaccinate his new son and he said “unless someone can tell me what causes this life long disability that so many families in our community are struggling with, I am not going to take any chances”. I then asked what do you think will ease your mind and he replied “the state health department needs to do research that looks into why our kids are getting autism higher, why it is silencing our kids and why autism is so severe in our community”. I could not have said it better.

You see the problem is not that our community does not trust CDC or facts, it is that we don’t trust the Dayton Administration’s health department. Minnesota Department of Health (MDH) has not allocated one iota or one dollar looking into causes of autism. All they do is preach the same message which no one seems to be buying. If you remember when Dayton was campaigning in our community, he kept saying his administration would look into autism. Well – add that to many of his campaign lies. MDH has zero desire to help our kids or our community. Autism is not a joke, it is tiring, exhausting, emotionally and physically draining and my advice to anyone having children would be to tell MDH to take a flying leap.

In other words, listening is a two way street. Why should we listen to them when they clearly don’t listen or care about our children’s health. Governor Dayton, shame on you for using lying words to get votes and Commissioner Ehlinger – shame on you for being a children’s doctor that does not care about children’s health.

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

Idil – Somali Autism Mom & Minority Advocate.

Alright – so, If you read the Minneapolis Star Tribune lately then you saw the articles written about people with disability in Minnesota and how many of them are in segregated workplaces, living situations, so on and so forth. I heard from the reporter writing this that Vermont has one of the best inclusion programs in the country for individuals with disabilities which includes autism.

Most of the programs that have been written in the paper are under DHS or our state Medicaid agency which we all know moves slower than tortoise. But there is sadly another trend of secluding children with disability particularly autism in the education system. There is a school district in Minnesota that has put all of the children with autism from kinder-garden to eight grade in one corner of a building and it is just them, no nuero-typical kids go there or even know what is down there. Not kidding.

Least restrictive environment under IDEA clearly states just that – children’s needs should be individualized based on their educational need in the least restrictive placement. Yet, this school district decided to use public funds and seclude kids with autism from the rest of the general education children. Their reason – well kids with autism have meltdowns and we did not want neuro-typical kids to see that. I kid you not. Another bogus reason, well – this way all of our speech, OT, etc. therapist don’t have to travel from school to school. Seriously, I kid you not.

Let’s explain this in layman’s terms. This district would rather not inconvenience their paid therapy staff, so they put all of these kids from five years old to 15 years old in one secluded, doors locked location. The bigger question is why the heck would the state education department approve such clearly inhumane placement. These children or their families don’t have access to the general education area. In fact, recently the school principle was giving a tour to the upcoming parents and their neuro-typical kids and did not mention the contained autistic kids placed downstairs in this building. To make matters worse, one of the students asked “what is down there?”. The principal panicked and stated – nothing “we don’t go down there”. How is that for LRE. If parents of this publicly funded district want to visit or observe their kids – they are told no or given silly excuses such as “well – you could see a kid having a meltdown. Right because you know autism parents have never seen that. Or my favorite – you being there will make our adult paid by public funds (just do your darn job) nervous. I kid you not.

Remember the Jensen and Olmstead case that has sparked so much outrage because vulnerable individuals with disability were being locked up and abused in publicly funded placement. Well – now imagine these kids who can be abused just as easily while the parents are not allowed to visit and the administration of this district would rather help and support their staff than the very children they get paid to teach and support. Not surprisingly, this secluded program’s ASD kids are mostly minority while zero, zilch, zippidy are staff of color. Not kidding. If these kids were mostly Anglo – I am certain such program would never exist nor would MDE approve it. Yet here they have without blinking because minority ASD kids are not even as good as animals.

Think about this for a moment, when these kids leave school into the real world, how do you think they are going to act? Wild and with more behaviors because they have not been exposed to the real world in their education setting. Equally important the neuro-typical kids are also denied access to these ASD kids which means when they see a kid with autism-like behaviors in target or some other public place, they will give the judgement eye, look and disbelief. Oh and when the district was asked why not expose the general education kids to the autism program – their response…….wait for it……it is really original…..middle school kids are self-observed and would not care or have compassion for ASD kids. I kid you not. This is 2015 in progressive Minnesota nice school district – how do you like them apples?

Study published about middle school kids and autism stated that less than 47% of kids ever heard of ASD. My guess is because of districts like this one that seclude and hide kids with ASD from their typical peers. That is so sad and heartbreaking to me as an autism mom and as a human being.

Cambell, J.M., & Barger, B.D. (2011). Middle School Students’ Knowledge of Autism. Journal of Autism and Developmental Disorders, 41(6), 732-740

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

Idil – Somali Autism Mom & Minority Advocate.

Federal Interagency Autism Coordinating met for the second time under the new Autism Cares Act couple of weeks ago on Jan 12, 2016. Their first meeting was more about introductions and going over their charge which is to update the Federal autism strategic plan, to get input from the public and go over autism research for the past couple of years since the last update.

Director of NIH, Dr. Francis came to the first meeting and said a lot of nice thoughtful things. Of course, I like Dr. Francis, so maybe I am a little bias. My favorite part was from a public member John R who summarized public comments. John is one of those people that can find positive in any situation while acknowledging all concerns. John said what most autism parents are feeling in the country and how most think that the Federal government is moving too slow in showing any significant progress.

He also talked about how slow research moves and how far we have come including the good things IACC has done so far, especially under previous chair and my all time favorite autism expert – Dr. Insel.

As usual, there was some that were upset that Dr. Francis only stayed few minutes. I think this assessment is unfair. Dr. Francis is the director of NIH not just autism. The fact that he gave our issue time out of his full day speaks volume to NIH’s commitment to autism. In addition, what the heck should he stay for. He is updated and knows what is going on. Then there was those that were mad because HHS Secretary Burwell did not come. I remember when previous Sec Sebelius came to IACC, the same folks got mad. Therefore, it is really hard to please everyone in the autism community. What I was mostly disappointed in the first and 2nd meeting was the lack of anyone mentioning autism and racial disparity.

I hope the new committee members keep the momentum we built and focus on recommending research that tells us how to decrease racial disparity, not the usual research that says “yes there is autism racial disparity in diagnosis, access to services and resources”. We already know that.

The new committee is not as diverse as I would’ve liked. I think the previous one under Sec Sebelius was much more diverse. But it is too early to judge them. We will have wait and see their recommendations and outcome.

While it is expensive and impossible for many autism parents to go to DC and take part in these meetings, I highly recommend sending your comments, questions and suggestions. They do listen and validate them and I speak from experience having had my comments validated back in 2010 and 2011 regarding the Somali autism prevalence research and CMS’ autism therapy coverage in 2014. Everyone’s voice matters to IACC and they represent or at least try to speak for everyone and in every issue relating to autism in the country. Below was their agenda for the last meeting.

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

Idil – Somali Autism Mom & Minority Advocate

Meeting of the Interagency Autism Coordinating Committee

Tuesday, January 12, 2016
9:00 am to 5:00 pm ET

National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 6
Bethesda, MD 20892

Schedule is subject to change. Meeting may end prior to or later than 5:00 PM depending on the needs of the committee. For more information on upcoming events, please see http://iacc.hhs.gov/events/

Next IACC Full Committee Meeting:

• Tuesday, April 19, 2016 – Building 31, NIH Campus, Bethesda, MD

Alright-so, Minnesota department of human services, (DHS) also known as the state Medicaid agency is the state’s largest agency in Minnesota. Lucinda Jesson has been in charge of this agency for the past five years ever since she was hired by Governor Dayton back in 2010. DHS overseas the state’s elderly, the poor and individuals with disabilities including autism. Jesson is moving on up to be a judge and has been appointed by Governor Dayton. The governor has increased diversity on the bench. Jesson replaces Hudson whom Dayton appointed to the state’s Supreme Court, his second Black appointee. Well – how nice, maybe Dayton is coming around in diversity. Minnesota judges don’t represent the state’s diverse population which is sad and is a main source for the unequal justice system.

I have been barking on Jesson’s ears since her first week on the job. In fact, when I heard she was going to the state senate back in 2010 – I went there to make sure she was asked about autism. I wanted autism to be on her radar constantly. Sen Berglin whom I miss very much asked her about autism and Jesson replied “this is my 4th day on the job, but I will look into it”. Jesson has not only looked into autism, but she has changed the landscape of it. Commissioner Jesson has been a champion for children with autism and their families. It is because of her heavy hand, that Governor Dayton and the state legislature approved millions for the new autism benefit we now have in Minnesota. In addition, Jesson added the autism website that is coming soon, created an autism team and added the diversity training for autism providers that is now required for all autism clinics in Minnesota.

In my humble little opinion, Commissioner Jesson has been one of my favorite state agency leaders. She has this amazing ability of separating the issue from the person. For example, no matter how I advocated which is usually in your face – East Coast, I ain’t trying to be your BFF personality, Jesson never took it personally. She always looked at the core of the issue being raised and not who said it or how it was said. In fact, many people are always mad at DHS for something or another, yet Jesson was always cool, calm and collected. She even has a sense of humor. Couple of sessions ago or so, Jesson was testifying in HHS conference committee’s last week. This is when all the i’s and t’s are being done to every policy and law that comes out of the state legislature which makes most people nervous and on edge.

At any rate, Jesson was called by Rep Liebling and as she is walking to sit down, the committees’ staff also walked in and folks in the room started cheering and clapping. You see, the staff are often overwhelmed and overworked during the end of the session and have to be in multiple committees that sometimes happen at the same-time. Jesson put her sense of humor hat on and said “Madam Chair – I realize that cheer is not for me, but for the committee staff”. I don’t know how she did it, but she seemed to know everything that went on at this huge agency that had billions to manage and thousands of people to serve. I don’t even know how she found time for my kazillian autism questions.

Commissioner Jesson, I wish you well and I am sure thousands of Minnesota’s autism children and families will greatly benefit from your autism policies and the roots you planted in DHS. We appreciate all of your work and wish you all the best in your next chapter in life. I am sure you will make a great judge. You certainly have the qualifications and the qualities.

Congratulations and good luck!

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, remember it was not that long ago even in this country when children and adults with disabilities were separated from society and secluded in institutions and hospitals. Now many states including Minnesota especially after the Jensen Settlement have moved towards inclusion and integration which I think are good.

So, then why are some school districts in Minnesota secluding majority of autistic kids by putting them in the basement corner of a building. Some school districts decided without input from parents or the public to put students from kinder-garden to eight grade in corners of a buildings. Children with disability should be schooled near their typical peers, and not secluded or segregated in any area.

The IDEA policy clearly state children must have access to education in the least restrictive environment. In other words, kids with disabilities including ASD must have access to mainstream classes and neuro-typical kids. In this setting or as I like to call it “hell hole” does not provide LRE, generalization or appropriate education. Instead it provides seclusion, segregation and separation.

In the long run, this type of setting will set us back to the old days of institutions and hospitalizations. We should instead move our kids with ASD into more inclusion and integration. Plus, if we hide the neuro-typical kids from our ASD kids – how can they possibly grow to have compassion and understanding later on for our ASD kids. Neuro-typical kids should be exposed to kids with disabilities in schools so that later on in life our kids are not bullied or intimidated.

The bigger question is why is MDE (Minnesota Department of Education) allowing this clear exclusion and segregation. Side note, MDE’s compliance division has zero person of color. How is that for irony – the division in charge of compliance and quality does not have one single person of color. Yet, they are suppose to be fair and objective which is pretty hard when you have nothing in common with the students and families who depend on your decisions.

I hope the state legislatures and/or federal guidelines prevent any school district that want to take us back to the old days when we would hide and shame people with disabilities by putting them in corners and out of sight.

As a mom to an autistic child, this kind of behavior from any educational district really breaks my heart.

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

Idil – Somali Autism Mom & Minority Advocate