Monthly Archives: February 2015

Comments Off on Not a Good Fit Based on OUR Discretion – Where have you heard that before?

Alright – so, the new Minnesota Department of Human Services’ Autism benefit is almost done – yay. This has been a long and difficult journey for me personally given that it all started after I was discriminated and bullied by so many MN ABA providers.

To put this into a context, currently MN covers and pays for ABA therapy for wealthy fee for service children and families by calling ABA skills training. In other words, for low income managed care kids – ABA is often denied, even though the funding is Medicaid. Think about that for a minute and the level of health disparity it creates and has created for the past several years.

If you are Black or Brown person – you have heard of the sentence “not a good fit” probably more times than you can count. This sentence is used in employment discrimination which is why Minn has the highest Black un-employment in the whole country. It is used in health care setting – hence the horrible racial health disparity we have in Minnesota. Then you add “discretion” and you get wide education gap, justice disparity and high suspension and expulsion for minority students. In other words, discretion mixed with not a good fit is the sole reason of so many gaps and disparities and now we want to add this lethal sentence to Medicaid coverage Autism therapy coverage. Are you bleeping kidding me.

Isn’t it bad enough that most Minnesota’s ABA therapy providers don’t already take minority ASD kids, DHS can not have any more lax oversight and create even more disparity which will only cost more in the long term. In today’s DHS meeting this was the theme from ABA providers who were mainly saying if a parent does not agree with our whatever then they can leave because it is not a good fit and it is our discretion. Can you imagine if a public school or a clinic said that. It would make the news, yet these Minnesota ABA providers that are getting millions of dollars of public funds from both state and Federal are such at ease getting rid of children and families whenever they feel like it and call it their discretion and not a good fit.

They can use their discretion to not take the older kid, the black kid, the minority child, the mother they don’t like, the nonverbal child, etc and etc. DHS can not let this happen in a publicly funded program that is already bias in so many ways. This will lead to so many lawsuits and class action problems because so many children and families will suffer due to a provider’s discretion.

There were other items we talked about today which I can’t possibly write into one blog post, but one that sticks in my mind now was the quality of the therapy and oversight of staff and training of staff.  I heard many ABA providers say we have this good oversight and that great training program. As the Elizabeth Tylor of ABA – I am sure what they say is not what always happens. I along with many other parents have seen a provider have good policies in writing of how they overlap or supervise their staff and evaluate children, yet not follow it. I and other parents have seen ABA centers look like a Hilton lobby with all of the state of the art feel, yet fail our kids miserably. I along with other parents have seen an ABA provider have well written informed consent that has appeal and grievances policies, yet refuse to follow it.

I along with other parents have seen an ABA provider manipulate ITP graphs or justify a child learning one skill to get the treatment, yet discharge a child that learned hundreds of skills in the same time period. I along with other autism parents have seen an ABA therapy provider say to a parent we don’t have staff in your area, yet fill it for different color families. I along with other parents have seen a provider’s psychologist sign off and recommend intensity of hours on an ITP for a child they never evaluated and a family they never met. I along with other parents have done provider surveys and were punished for our opinions because they said if we thought like that, then we were not a good fit for their services. I along with other parents have seen a child get discharged or not accepted for their behaviors by the behavior clinic. In a state with less than two dozen ABA therapy and couple of DBI therapy providers with thousands of autistic children, it is clearly about supply and demand resulting families having few choices and afraid to speak up.

In sum, the notion of leaving this benefit’s quality, oversight, plan of care, etc – to their discretion is cruel, wrong, insane and stupid.

We need from DHS an autism policy that is based on medical necessity based on actual research not the owner’s pocket size or opinion.

We need from DHS an autism benefit policy whereby if parents are bullied, retaliated against or discriminated against – there is a process and a pathway for them.

We need from DHS an autism benefit policy that assures the child gets treatment that is truly child centered, family driven and culturally responsive in reality and when it does not happen – a safe place for families to go. Visiting MN ABA centers or providers who will sell you their sugar ideas and Hilton lobbies is not helpful and waste of time. My friendly and gentle suggestion to DHS would be use common sense, see what other states have put in their state plans or policy books, get technical assistance from CMS and talk to current and past autism ABA parents then make a decision and stick with it.

Imagine if MN child care centers were allowed to function at their discretion. Imagine if public schools were allowed to function at their discretion, imagine if health care clinics that get public funds functioned at their discretion and got rid of patients because they thought it was not a good fit. If you can’t imagine those scenarios then why are autism families being put through it.

The goal should not be to keep any provider in business because we are in short supply. The goal should be to get rid of racist, greedy and in-humane ABA providers and keep compassionate, kind, reasonable and fair minded providers who are in this for the children and families.

We need from DHS to hear and really listen not just to those that show up in these meetings, but maybe send survey to actual ABA families in a anonymous way since most parents are scared their child will get discharge if they complain about an ABA provider. In-case anyone is in denial about Minnesota’s horrible racial disparity read herehere or just google it.

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate


Category: Autism Policy

Comments Off on My Gratitude for Minneapolis Public Schools Superintendent Bernadeia Johnson

Alright – so, sadly Bernadeia Johnson who is the superintendent for Minneapolis public schools decided to leave her post. Friday was her last day – Jan 30, 2015. To say Bernadeia has my gratitude and appreciation is an understatement. I visited her yesterday at her office to tell her our thanks and to let her know that it is Black leaders like her that made my day in my little autism advocacy.

If you can believe it – this was only my second meeting with Dr. Johnson. The first time we met Bernadeia was when she first started and we were also starting our autism advocacy journey. As we all know now – I took my son to Mpls public schools after another Somali autism mom told me how good their autism program was. My first phone call there – I spoke with Anne Harrington (yes, Anne and I go way back) who invited me to a meeting and I went. What I saw there was the beginning of our advocacy journey. There were dozens of other Somali autism parents just like me. I felt good because I wasn’t alone, yet sad because autism was so high.

To make a long story short – we contacted Bernadeia and asked for a meeting. She said yes and invited everyone in Mpls public schools that had anything to do with autism including the director of special education Ann Fox, Said Garaad & Abdirahman Adam among others. She asked what we needed – we told her data. We needed the numbers because no one believed us at that time that autism was higher in our community. In less than short few weeks – they sent us the numbers which said While Somali kids make up 6% of Minneapolis public schools, they made up 25% in autism classes.

That was it – one meeting and one request which was the biggest and the best for us because then we took those numbers to any reporter that would talk to us which at that time was only WCCO’s Mike Caputa. And as they say – the rest is history.

That was the first time I met Bernadeia and she was right to the point without any sugar or salt. I have admired her since that day and she has energized me in my little advocacy. To see a person of color in a position of power does something good to one’s psyche that is hard to put into words here. I am saddened that she is leaving and felt so much pressure from every corner. First of all – it is tough for a Black person to lead anything in Minnesota. Every failure in whatever agency you are leading becomes your personal failure. This harsh and different standard is not used in more male and White agency leaders. For example, we know Minnesota has a horrible health racial disparity, but you don’t see the media reporting how Commissioner of MDH has failed and must be replaced. You also don’t see average Minnesota citizens blame him for that record. And, when was the last time you saw Mayor RT being blamed for Mpls having the worst gap in every category? There is this subtle double standard here that is sort of standard. Blame the Minority leader for whatever is wrong and give the Caucasian leader the benefit of doubt or even promote them.

On the other hand, the fact that Mpls schools have wide achievement gap between Black and White students was solely on the personal shoulders of Bernadeia. Then add that when Black Minnesotans join ganging up and blame the only Black leader we have. Then add that when Mpls public school board many of whom take their own kids to private schools join this ganging up. This can take a toll on you was some of Dr Johsnon’s words to me yesterday. Now, I am in no way or shape in her shoes, but I told her about my little autism advocacy in when they say – she does not speak for us and to that she should ‘ve said “unless you have better or different ideas then step aside”. To those that doubt your ability and try to bring you down – take all of their negative words and energy and drink it like was the best latte, vodka or energy drink you ever had.

I think Dr. Johnson is a powerful Black woman who is articulate, educated and full of ideas that Mpls and its school board failed to see. Who else would’ve had the backbone to say “before you suspend any more Black or Brown students – you better check with me”. We all know when a black child acts out in school as all kids do, they are suspended or expelled. But when a White child acts out – well then they are just being kids. Oh please – kiss my you know what. Bernadeia had the guts to stand up to this horrible disparity that is from school to prison pipeline for many Blacks especially boys.

Who else would’ve supported the LIFO (last in first out) bill that Dayton vetoed which said schools can not just keep a bad teacher because they have been there a long time, rather they will hire and retain good & effective teachers. ” If you have last in first out then you are not looking at quality, you’re just looking at a seniority number” she said to Minnpost reporter. Plus who are the teachers to be hired last and to be fired first – minority ones. Who else would’ve supported public charter schools and close failing public ones.

Dr. Johnson – please know that you are a trailblazer and a hero to so many parents and students. It was Bernadeia and Hussein Samatar that started teaching Somali language in Mpls public schools and put extra resources for ELL. In her office was a gift she received from those Somali students.

Whatever your next chapter is in life – I am sure you will make a huge difference and people will respect you for it.

I cannot thank you enough for your help, support and guidance in our autism advocacy – it took one meeting which is rare in Minnesota. I wish you well and luck and please keep your head up and know that every journey starts with a small single step.

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

Idil – Somali Autism Mom & Minority Advocate


Comments Off on Governor of Virginia Grants a Conditional Pardon for Neli Latson – a Black Autistic Young Man

Alright – so, if you follow national autism news then you heard of Neli Latson who attracted a lot of national media attention. Neli was caught up in a system that is not always fair or even understands mental health, autism, disability and mental illness. I think most in law enforcement lack the proper training, education and awareness in how to deal with autistic kids and adults. Then when you add the color of one’s skin to the mix and often subtle bias policies in law enforcement then you get the exact situation that happened to Neli Latson. You can read Neli’s story in my previous post or here or here or here or just google his name.

At last Governor of Virgina Terry McAuliffe who got injuries resulting from a vacation in Africa managed to work from his hospital bed granting pardon for Neli who will now be able to go to a treatment center. “McAuliffe was up and working from his hospital room. He was making and taking calls and even granted a conditional pardon to an autistic Stafford inmate, confirmed spokesman Brian Coy that will clear the way for Reginald Latson to seek treatment for his autism”.  Here is that full story of how wonderful this governor is in listening to everyone of not just his voters, but parents and advocates from around the country including me.

I could not help but think the contrast between our governor here in Minnesota and Gov of VA. I don’t live in VA, yet when I would call a lot to ask when and if Gov Terry can pardon this autistic young man – no one in his office ever told me that I was an angry Black woman, I did not live there, they could not do anything or call my local legislator which is what Dayton’s office does even for the voters that live in Minnesota. It was refreshing to hear kind people working in a state government office with no attitude and no elite personality.

There were hundreds if not thousands of autism parents, advocates and reporters calling about Neli, yet Gov Terry’s office never got overwhelmed, irritated, arrogant or out of touch as Dayton’s office often seems to be. It was simply amazing to see this kind of governing. It is too bad we don’t have that here in land of disparity mixed with ignorance and arrogance.

At any rate, Neli is now able to get the therapy and treatments he needs. Equally important is the fact that this has raised some important questions in how we can avoid this in the future. Although – I really have zero desire to advocate at MN state legislature this year, but If I were or If I could advice others who might is to ask a legislator to write an autism license plate legislation in which funding from that could go to autism wondering, training and education for Minnesota law enforcement in autism and other disabilities. The best person for this in the senate might be Sen Dibble and in the house – maybe Rep Dean. I think if asked or persuaded in a way that is reasonable – it could pass.

Finally, I would advice Neli’s mother who was a force in this to take her story to IACC and to Congress to assure what happened to her son never happens again to him or another child and ask for policies to prevent such tragedy.

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

Idil – Somali Autism Mom & Minority Advocate