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Alright – so, by now we all know that I am not a big fan of the current commissioner of DHS – Emily Piper. It is not even because she didn’t have any human services experience when she was hired by Lt. Governor Smith – sorry meant Gov. Dayton, it is that she seems aloof and out of touch when it comes to the matters that matter the most to Minnesota’s disability community in particular autism. Yes, I know she visits a lot of places and takes pictures with them. But as the saying goes – you can’t fake compassion. She is no Commissioner Jesson nor Assistant commissioner Jennifer D. These ladies believed in person centered care, one could negotiate with them or even disagree with them in a civil manner.

With Piper – there is no feeling at all from her tone nor her body language. It is like dealing with a brick wall. Now, we all know the commissioner of any agency sets the tone, hires lower staff and leads any agency with their footprints. Under Piper, autism has suffered in so many areas. For example, if you can believe it while DHS held numerous autism meetings for ….wait for it…. providers, they only held one meeting for autism families since EIBDI was approved. Think about that because in theory families should come first but at DHS companies come first. It is as though they are the provider agency rather than human services agency that is supposed to care about people with disabilities, the elderly and the poor. DHS will listen and validate an autism agency first before it listens and validates an autism parent or individual.

I remember under Commissioner Jesson, there were so many autism meetings for parents and families. One of these meetings that comes to mind was held by Ms. Wagner. I think it was somewhere in Mpls where many parents came and shared their children’s background, challenges they faced and their joy. I was watching Ms. Wagner’s body language and facial expression. Not even once, did she say to a parent “your time is up, you only have few minutes to talk, etc.” She listened intensely, let every parent finish and take their own time and she even  took notes. Another time, there was a meeting for parents and all stake-holders at DHS about autism, and Commissioner Jesson showed up and stood in the back – just listening. I don’t think many of the public knew who she was, but obviously I did. She then left without bothering anyone or making a fuss she was there. Another time, during another autism meeting, Assistant Commissioner Loren C showed up and told folks that DHS cared about autistic children and their families and will consider all opinions and input. Those were the good old thoughtful days.

Now, all of that is gone under Commissioner Piper and Assistant Commissioner Wilson. Wait, I take that back, Wilson came to one meeting where she basically tried to silence me by reading some crap about “bringing your perspective not your bias”. Let’s put this into perspective. This is the agency that has many current discrimination lawsuits lecturing a black autism mom about brining my perspective not my bias. This is like Bill O’Reilly preaching about respect for women. Come on now. In fact, DHS fired the autism policy lead who was African American that had years of policy experience and hired a Caucasian policy lead that has zero policy experience. Not to mention she lacks any empathy or compassion for autism families. If you watch the body language of the current DHS autism policy lead when she talks – you get a cold just by watching her.  She blinks a thousand times per minute and just repeats her script no matter how stressed autism parents are or what they ask her. How nice Commissioner!

So far under Piper leadership, DHS only held one autism meeting for parents and families. In this meeting, they were rude, condescending, defensive, defiant, dismissive, out of touch, arrogant and plain wrong. There were parents who were so overwhelmed with autism, understandably so who were crying, yet DHS had some coordinator that made Idi Amin look welcoming. Not kidding.

So what happens now? Well – as an autism mom and advocate, I always have to look at the glass half-full. The good thing is Piper doesn’t have much time left in her term. There is always complaining and writing to our legislators. There is also CMS, but I would not hold by breath there unless another good person replaced Marilyn T. As autism parents – let’s never give up on our kids, let’s change DHS’ negative reactions and bullying into energy and advocacy that moves our kids forward in a positive manner.

An African American employee sues DHS, DPS and other state agencies for racial discrimination – really what a shocker.

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

Idil – Autism mom and Advocate

Alright – so, if you read my blog then you realize I am not a big fan of the current state Medicaid commissioner in Minnesota. If I were a SNL writer – I would be in heaven. Sadly, this is not a comedy show. DHS is in charge of the state’s most vulnerable population, those with a disability, the poor and the elderly. Their needs are very serious and important.

Yet, Lt Governor Tina Smith chose to appoint Ms. Piper to lead DHS even though she has zero, zilch and nada experience in human services or dealing with such vulnerable population. This appointment was politically calculated and not based on experience or background. As a result, we are seeing the effects of this. For example, autism services – things are going from bad to worse. There are so many confusions and chaos in the autism area in DHS. The people hired to lead have no idea what they are doing. They are wasting tax payers dollars and resources in almost everything they have done so far. They are giving families and providers so much wrong and false information that has real consequences for real children and real families. Yet, Piper’s administration hasn’t taken any action to correct this, nor are there consequences.

I and so many other families worked really hard in this state to get good resources and services for children with autism and their families, and it is heartbreaking to watch our hard work go down the toilet by a bunch of inexperienced, ignorant and cocky liberal elites. Ughhh.

In my humble little opinion, all that happened under Piper administration for autism is silencing, bullying and intimidating parents and advocates that disagree with them or call them out on their ignorance. This kind of behavior actually energizes me but quite frankly is useless and wrong for a state agency staff to behave such manner. About a month ago, I went to one of their trainings about autism and the services offered by DHS. I remember thinking to myself – this can’t be real.  Are these people really saying so many wrong and false information. So, I decided to tell them they were telling us wrong and in-correct information. One of them Ms. Mua said to me “We need to have respect”, and I told her telling you all to stop giving us wrong information is not even in the same category as respect and silencing us is not acceptable”. Then another trainer Britania stated that since I am assigned to speak with Asst Commissioner Wilson I should direct all of my questions to her. I told her that it is irrelevant who I am assigned to because she needed to give the right information and not be defensive.

To make matters sweeter – I get a letter…wait for it…… from the assistant commissioner Wilson telling, no let me rephrase that ordering me to respect DHS autism staff. Well – that was it. I asked her why she would even dream of trying to silence a parent let alone me. Her response was even more shocking and disturbing… wait for it…..”I didn’t even read the letter, I just sign it after I got it from DHS ASD policy team”. I kid you not. You see this kind of BS happens when inexperienced and politically appointed personnel take charge. One thing is for sure this letter is the gift that will keep on giving. I actually framed it and taped in my front door so that I can see it when I am leaving the house and when I am coming back home to sort of give a pick me up energy like a latte.

I mean really – the idea of silencing or bullying families about autism especially when DHS ASD team is clearly stupid and out of touch is beyond imaginable. This kind of behavior is why we need to vote wisely and hold our elected officials accountable to their actions including who they appoint to important positions. I can’t wait when Tina Smith runs for a governor – how will she explain so many bias and cocky decisions including naming a complete rookie to lead the most important agency in the state.

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

Idil – Autism Mom & Advocate

Alright – so, the Minnesota Department of Human Services (DHS) is responsible for overseeing the new autism benefit. Sadly, no one from the previous Jesson administration is there in the newly created ASD area. Even sadder is that they now have a bunch of hillbillies that don’t understand policy from poop. They make Sarah Palin sound smart. Ok, so may they don’t see Russia from their window but really they are completely ignorant about this ASD benefit.

A few weeks ago, they did a training about EIDBI also known as the ASD benefit. How can I put this diplomatically, I have seen a kinder garden give better and cohesive information. They basically read from the DHS website which had mostly incorrect information. They were defensive when asked to explain simple policy questions. They were arrogant when they were told they were wrong and were giving folks in-correct information. Now, let’s think about that. It is one thing to be clueless and ignorant – it is another to be arrogant about it. Have you ever listened to Rudy Giuliani explain something on TV? Have you noticed how unreasonable his explanations are and how defensive he gets. Well – compare to the nut-jobs we have now at DHS ASD policy,  Rudy G sounds reasonable even likable.

This benefit is funded half from the state and half from the federal government – CMS. In other words, this is a publicly funded program and the information must be explained to the public in a manner that is clear, concise and understandable. To come from John Z and Anne H to these idiots is really frustrating and disappointing. In looking at the glass half-full – one can say there is only a couple of years left in this administration and with any luck, we will get a new administration that will clean house and fire these clueless, ignorant hillbillies that should not be managing something so important as autism.

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

Idil – Autism Mom & Advocate

Alright – so, we probably all heard of this song by Diana Ross. This is how I feel how Lovaas ABA therapy provider treated my son and I. I think Lovaas and the person who runs the Minnesota location – Dr. Larsson are racist pigs. (not a typo and my opinion). I will probably write a book about my experiences in many Minnesota ABA therapy providers, but clearly my least favorite has been Lovaas clinic for their blatant racist and bias tactics.

Back in 2008, when my son was only five years old, I enrolled him after being on a wait list for a long time into Lovaas’ program. They initially told me that I had to take him out of pre-school, speech and occupational therapy because that would be a conflict with their method of teaching. So like an idiot I believed them and took him off everything. Then the clinical supervisor we had who I actually thought was the only sane voice of reason – Ms. Amy N left and we were assigned to a clueless one Ms. Karin Morris who had no behavior certification and was not licensed in any mental health area. In less than couple of months after she was assigned to us – Ms. Morris told me that my son who had non-verbal autism was not “the best outcome” and would be discharged.

Imagine for a minute being a parent and your child’s kinder-garden teacher tells you such cruel words. Your first reaction is WTF – he is only five. He is just starting and what the heck is best outcome. Shouldn’t each child learn to their best ability and their God given potential. I remember I cried endlessly then I begged Ms. Morris, Larsson and even called Scott Wright and his wife Linda Wright who run Lovaas East and West coast. All of these Anglo’s stood together and told me bunch of bleeping lies including – my son was too old for their program. Keep in mind he was only five at the time. Then Mr. Wright said “we usually transfer kids to school by this time”. What time is that I asked and he never responded.

Mrs. Wright seemed to have a little bit more compassion, but she too was powerless or at least didn’t care enough to speak for my son. So, I complained to everyone I can think of and every agency. Sadly, no one could help us. Everyone felt bad and wrote letters to Larsson including my son’s mental health professional, disability law center, the Ombudsman’s office, DHS and everyone in between to no avail.

Larsson was bent on listening to unqualified Morris over logic and reason. He refused to let my son stay in the program and learn. I decided to fight them because there was no mountain high enough, no valley low enough and no river wild enough that was going to keep me from protecting my child as any parent would.

Stay tuned for what happened next!

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, there was another autism training from Minnesota Department of Human Services or the state Medicaid agency on the new ASD benefit. Don’t worry- this blog is not about the ins and outs of that training. It is rather something I usually don’t blog about or even notice.

I usually don’t notice providers or agencies that are not directly related to autism therapy. At this DHS meeting yesterday – the owner of WMLC came. Personally, I don’t know her or have never seen her in any autism meeting, training or advocacy. Not really sure why she was there since WMLC does not provide ABA or developmental therapy per se. Maybe to be just annoying to those of us living with autism daily.

At any rate, as the trainer was explaining (not very good) about how the ITP must reflect the CMDE, I asked what happens if the treating provider does not follow the recommendations of the comprehensive evaluation or the family’s culture and values. On one side DHS said “they have to follow” then on the other side they said “they can just say we wont because it is different than our clinical judgement”. Sound confusing – imagine how I felt.

Then some irate woman screams from the back and says to me “if I keep asking about this question or about family culture values”, she was going to leave the training.  Of course, my response was bye and have a nice day after you leave. After words, I looked up her company and it is no surprise they had no person of color in their site and from what I have been able to gather so far don’t take kids with autism on the severe end. In other words, they are very selective in who they serve. Therefore, it is no surprise that she thought talking or asking questions about diversity and equity were wrong in a public meeting given by a public state agency.

After I left this training – I called one of my friends who happens to be African American and told him what happened. I also told him how when there was a different person asked about billing questions even though this was only about CMDE and ITP – there was change in the body language, tone of voice, and no one labeled this person difficult or disruptive. Yet, God forbid if we ask diversity or equity or even parent/child rights questions – we are labeled angry, emotional, difficult and disruptive. He said “Idil – aren’t you used to this by now and isn’t that your middle name from the state legislature”. Lol, I laughed and felt better because that is exactly what we are called anytime we ask or demand equity.

He said something else that prompted me to write this post, “there is high level of civilized racism in Minnesota which is why it has the highest racial inequity in health, education, housing and employment for minorities in particular for African Americans”.

Um, that is true. Then I asked him so what now and how do we deal with this Minnesota nice AKA passive aggressive AKA civilized racism. He said “we just have to accept it and not worry about it”. This I disagree and here is why;

First of all, we should never ever ever accept racism or bias treatment even if it is delivered nicely or subliminally because that will only enhance and maintain that behavior. 2ndly, We have to fight effectively and relentlessly against it through mind over matter and look at our fight or advocacy as energizing and fulfilling or we will get wear down and decades from now we will still be saying the same thing.

Now, there is not much that I really care about except autism which is the first thing I think about in the morning and the last thing at night.

My message to the annoying owner of WMLC is back off of autism and our issue. We have zero desire to tolerate your toddler behavior and meltdowns. Next time you come to an autism meeting, workshop or training – we expect you will keep your rude behavior to yourself.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – so, Remember when United Airlines’ logo was “the friendly skies”. Well – no more or at least not friendly to autism children and their parents. We have all heard the autistic child flying on United couple of weeks ago that had a meltdown due to her disability.

United kicked this child and her family out instead of accommodating her disability. If you travelled with a child that has autism – then you can understand how hard that is. Our kids are routine oriented, yet un-predictable. This kid would not eat what the airline was offering and had a meltdown. As a parent, you can bring everything your child ever ate or might want – then at that time, they might ask for something totally different.

I remember once on a flight, my son all of the sudden asked for a car ride. Oh la la….  Luckily, it was not United and the airline crew and passengers were very understanding. There was an autism teacher on board who played with him and distracted him. They even allowed us to walk on the hallway when he would not sit. They also allowed us to get out first and asked the other passengers to wait. If we can make accommodations for people with physical disabilities that use wheel chairs, then why can’t we equally be reasonable towards people with developmental disabilities. They are just as human. They are differently abled and not less. This really pisses me off to my core.

I think any child with a disability should access everything a typical child would and we as a society need to be understanding. I guess I will no longer be flying United and hope we all as autism parents, family and friends do the same.

This child’s parent is planning on suing the airline – I would say good for them and wish them good luck.

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

Idil – Somali Autism Mom & Minority Advocate

Alright – So, Minnesota Autism Center which has over 300 Autistic kids many of whom are minorities according to public data operates a school. They call it “The MAC School”.  Now, in order for a school to be a school – it must be either a private or public school. Or a charter school which functions under the same guidelines as public school.

According to Minnesota Department of Education – the MAC school is not a public school nor a charter school like the Lionsgate. Ms. Marshall who is the executive director told the state education department the MAC school is a private school.

This then begs the question of why are children using medical assistance transportation, such as Care Cabs since they can’t transport students into private schools? Why is the MAC school then billing Medicaid even though they are private school. According to MDE – Medicaid can be billed for specific mental health services, but not for 8 hours a day and 40 hours a week for every kid which is what the MAC school is apparently doing.

In addition, if this is a private school = why are the behavior therapist told to teach the kids academics, but write ABA and medical treatment in their progress notes. And, why is KEPRO who is suppose to only authorize medically necessary skills therapy authorizing thousands of educational hours for a private school.

Finally, if the MAC school is a private school – why isn’t there any diplomas or graduations for these kids?

There are a million confusing questions about the so called MAC school which is run by Ron Carey – the previous chair of Minnesota Republican Party of Minnesota and Ms. Kathryn Marshall a local attorney.

Here is what I think along with many other autism parents and advocates – The MAC school is an ABA center providing educational and academics while billing CTSS under DHS/MA/Medicaid and are calling themselves a private school.

Sound confusing – imagine how autism parents and children feel. I hope that DHS/CMS and MDE assure our autistic kids get what they need and not what the owners of MAC want. Autism without on purpose confusion is challenging – there is no need to add this un-necessary chaos.

In other words, what exactly is “The MAC School”? I ask DHS and MDE to assure they are what they call themselves and KEPRO authorizes only that to assure our autism kids and their parents don’t get the run around.

Here is the list of Minnesota’s public and charter schools as well as nonpublic school and here is the MAC website where they falsely call themselves a school. They are not a public, private nor a charter school, but DHS and MDE must address it.

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright – so, from time to time – I get contacted by an autism researcher that wants to do a Somali autism study. They are usually from various states and sometimes from Europe asking for my input or comments. First, I want to make it clear that I really appreciate being asked and respecting my opinion. However, it has become hard to answer everyone especially when most are asking similar questions.

So, I decided to answer them in this post and hope people read it because it might take me a while to respond to your questions.

1. What do you think is the reason for the high rate of autism in the Somali community in Minn?

Answer – I am not a researcher, but I would say there is a predisposition gene and some kind of an environmental trigger.

2. Do you think that environmental trigger is the vaccines?

Answer – I understand many parents believe that and I always validate all parent’s concerns, however research has stated there is no link between MMR vaccine and autism. I also think there are a lot of Somali women that bleach their skin with creams that contain mercury which causes developmental disorders like autism.

3. Is there still stigma with autism in the Somali community?

Answer – this is a tough question because for the past 4 or 5 years, I and other parents have tried hard to take away the stigma from mental health and disabilities in our community. Sadly, it is still there and people assume autism is a disease which it is not. It is a disability that is lifelong and we must appreciate everyone’s ability and help them with their challenges. I also hope that those whose children don’t have autism are kinder and have more compassion for our kids and our autism families. Often autism families hide from them and not from other autism families. In other words, there is not as much stigma, but it is not all gone either.

4. What is your next step in advocacy for autism in the Somali community?

Answer – I think after CMS approves MN DHS autism state plan to cover autism therapy for low income families – I would like to rest and leave the advocacy scene for a while. Autism advocacy takes a huge emotional toll on parents, and I never wanted to be the face for autism in the Somali community. I just wanted to raise awareness since when we started no one knew about this disorder in our community. And, I think we have accomplished that. Plus, my backbone community leaders who were the wind behind my advocacy wings have either sadly passed away or moved away. RIP – Hussein Samatar and Abdulrahman Adam and I miss you Dr Fahia and Mohamed Jibrell.

5. Do you think there is a lot of discrimination in services and research in autism?

Answer – Yes and No. I think to say everyone purposely discriminates against minority autism children and families is both silly and ludicrous. There are a lot good and sincere autism professionals that really want to help all kids and families. By the same token, I wholeheartedly believe that racial autism disparity comes from subtle & bias policies which I think should be fought via policy changes and diversifying the autism workforce. For example, every autism research must have diverse staff and diverse subjects and every autism program must have diverse staff and families to reflect their environment. I think that is the best way to defeat and eliminate autism racial disparity. In addition, I think the CLAS guidelines must be included everywhere. Finally, communities of color must learn to become therapist, researchers and providers themselves.

6. Are you currently advocating for Somali Autism Research funding?

Answer – No. I think other parents and community members must now continue this work.

Above questions are usually what I get from autism researchers – I would also add please hire a Somali person if you are really interested in doing Somali autism research. Let me put it this way, nothing about us without us which is the same logo used by self autistic advocates and they say it better than anyone.

If you are a student doing a paper and need a parent’s input, I recommend contacting Somali autism parent network  which has lots of Somali parents who can provide you what you need.

Thanks and I hope this makes sense and it helps all of us find answers to autism while celebrating all autism people.

Above words do not represent any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Alright – so, this is not directly about autism, but if anyone thinks there is no racism then they clearly live under a rock. I am saddened and hurt by this wrong verdict to not indict this officer who shot and killed a young black teenager in Ferguson. I remember vividly about the Rodney King beating and how it was on video, yet no justice there either. Black lives matter too.

Separate and unequal,  A Mother’s White Privilege – but not for Black Mothers, how can that be.

I grew up in Boston and I remember the Charles Stuart case very well where a white man blames the shooting of his wife and himself on an imaginary black man and guess what – wait for it…..Boston police actually find an imaginary black man Willie Bennett and arrest him. Think about that for a minute. When a black child or person is killed by the opposite race, there is always some reason to justify their actions, but they arrest blacks even made up ones.

You see it does not matter because justice rarely prevails for people of color here even if video supports it, even if a child is killed, even if whatever – there is simply no justice. How can a nation built on equality and justice treat so unjustly to some of its own citizens? I ask… I cry as I write this, I am pissed as I write this, I am sad as I write this. How can any minority mother let her teenager son go out and not worry now. How can this happen again 20 years later?

Where is NAACP? Where is the National Urban League, Where is the Black Congressional Caucus? Where is our First Black President? Where is our first Black Attorney General? Where is equality here – where is justice? Did he need to shoot Michael so many times, how can that be self defense. Shouldn’t that be killing cold blood and leaving the body for hours on the street while blood drained into the street like an animal.

I cry as I write this, I am pissed as I write this, I am sad as I write this. How can we now trust those trusted to protect all of us? how can we know they won’t protect their bad apple? Why was a prosecutor with clear bias intentions allowed to take this case? why didn’t NAACP and others say no way this guy is too tainted to be fair?

Blaming twitter and the media for the death of a Black teenager – isn’t that mind boggling, isn’t that bizarre, isn’t that a red flag? What happens now because Ferguson is every city in this country where the police force never reflect the citizens? Why do we vote for stupid and racist then only complain. Why can’t we vote for our own or for those that will be fair and just.

We can beat racism at the ballot, we can get justice if we vote right and for fair people.  An indictment needed to have 9 out of 12 jurors, and the fact that 9 jurors were non minority was not an accident. How long are we going to be fooled. We can’t just tweet here and there, those with power and influence must do something.

How Ferguson’s Black Majority Can Take Control of Their City. This will not happen until people actually vote and replace these arrogant and racist leaders in Ferguson and nationwide. Sadly, it just does not click for us to make the connection that our votes are connected to who is in charge as it was evident in this months midterm elections in Ferguson.

Unless we vote them out another child will be killed and no justice will be served. We can’t keep repeating history and wonder why no progress has happened.

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

Idil – Somali Autism Mom & Minority Advocate