Monthly Archives: February 2014

As we all heard by now, Rep Phyllis Kahn who has represented district 60B in Minneapolis which now has lots of Somali Americans has been in office for decades. Rep Kahn is now being challenged by Noor who is a Somali and recently moved to this district.

He is also the interim executive director at Confederation Somali Community of Minnesota (CSCM) after Dr. Saeed Fahia sadly left. I initially was very excited about Noor’s candidacy because I thought he sees the pain, the frustration, the lack of good jobs, lack of enough affordable housing, youth without guidance and direction, lack of safe playgrounds and parks, etc and etc. I was mostly excited because he sees families dealing with autism, mental health and not even aware of services or resources to help their children.

Overall, Noor should be in tuned with the community since his office at CSCM is below Cedar/Riverside – but his speech lacked the real needs of our community. He sounded more like a polished politician rather than a community leader. He said to an audience of hundreds of Somalis eager to hear his agenda – “it is not about me, it is about you – it is about us”. I am sorry, Mr. Noor but not talking about the real issues this community has suffered with for years was not mentioned. His speech was not about us, it was more about him and his political ambitions. I know some might say, he is a politician, so what is wrong with having political ambitions. Nothing if they in parallel uplift your constituents, but if they feed your ego, leave your voters in the dust and say bunch of sounding good words that have no real meaning then you are no different than your opponent. You are no different than all of those before you that have failed this district for years and decades. And, it would be a shame to elect you and wake up years later with the same problems. This district needs to wake up now and demand someone who will represent them not in just skin color, but in policy and positive outcome.

They say in autism, if a child has any behaviors it is best to nip it right away before it becomes a rigid routine. My advice for district 60B voters would be to nip Mr. Noor’s selfish political ambitions. If he is not going to talk about, have policy ideas and address your health, education and economic concerns then he is no different than Rep Kahn or any other elected official in this district. I mean think about it, if they are so good then why are your children suffering with autism – the highest number in Minnesota (1in32), why are your youth wandering the streets with no real future, why do your elders mostly have chronic medical conditions and mental health is as common as Canjeero?

You see, the current Cedar/Riverside elected officials (most of them anyway) have not really addressed your concerns by nipping and fixing the issues, and if Noor behaves like he did last Wednesday at Brian Coyle redo caucus, he is no different rather more of the same.

I was very disappointed by Noor’s speech. I think he gave a mediocre speech – at best. He had the momentum and the ears of so many and he blew it. How can we be sure he won’t neglect us if elected? how can we be sure he won’t become like so many other politicians interested in their ambitions rather than their constituents concerns?

This district deserves elected officials more like Sen Wellstone and sadly they don’t exist – maybe not even born yet. There was a man who truly cared about his voters, the little guy, the underdog & the most vulnerable. He never acted arrogant, behaved selfishly or took his voters for granted. I miss him!

In addition, at the redo caucus – voters were asked to present proof of residence by MN DFL chair and associates. I am not surprised by that, but really surprised how little attention that got in Minnesota given the level of meltdowns they had over voter ID in 2012. More double standard at MN DFL – nothing new here. Results: Noor got 28 delegates and Kahn got 15 delegates. I just hope we don’t vote for folks because of their skin color, but for their policies and creative ideas. That is how our community will succeed.

(Fadlan ha u codaynin siyaasi barkee isku qabiil baad tihiin, ama waa Soomaali. Waa in aan u codayno qofka bulshada Soomaliyeed dhibaatooyinka haysta si fiican wax uga qaban doona. Waa in aan u codayno qof laf dhabar iyo damiir leh oo noo istaaga. Hadal kaliya haan ma buuxsho ee qiiro yay na qaadin).

Here are some photos and notice where residents are being asked to cough up ID’s.

In a related story, Mayor of Minneapolis – Hodg
es hands the previous Brian Coyle Caucus investigation to St. Paul due to some conflict of interest. I think (knock on wood) Hodges might be the next MN DFL that can come close to Sen Wellstone and of course Rep. Clark. 

Above words are my opinion and do not reflect any candidate, agency or committee.

By now if you are involved in Autism as a parent, family, caretaker and especially professional – you heard of the New DSM-V (Diagnostic and Statistical Manual of Mental Disorders) that was released by The American Psychiatric Association last year. If I could sum this edition in one word in relation to autism for me would be “perfect”.

Here is why;

First, the old DSM-IV divided autism into many areas – PDD-NOS, Autistic Disorder, Rett’s & Aspergers. With the new DSM-5, all will be called ASD (Autism Spectrum Disorder)

2nd, based on the child’s severity of symptoms will determine the level of services and the intensity they will get. In other words, before the less severe of the symptoms the more services or earlier that child got intervention, which left many children with severe ASD on the sidelines waiting for treatment and services while losing precious window of learning opportunity.

3rd, Children and Adults will no longer be divided into high or low functioning by using their verbal abilities since we know that verbal does not mean high functioning and nonverbal does not mean low functioning. In other words, each child will truly be diagnosed and treated based on their needs.

4th, Hyper and Hypo sensory sensitivity will be evaluated. This is particularly good since many children with ASD also have sensory processing disorder (SPD) and did not always get therapy for it. Many public and private insurance companies did not cover SPD and always assumed every symptom of autism was a behavior problem. It is not and now children and individuals with ASD can get proper sensory treatments. This will also hopefully lead to more rigorous SPD research.

5th, Children and Adults with ASD don’t have to get re-evaluated meaning DSM-5 will be used for the next diagnoses. It is not a do-over. In other words, if you were diagnosed with Autism through DSM-4, your diagnoses is still valid.

Basically, everything else is still the same. A child must still lack or have delay in communication skills, social skills, repetitive behaviors, rigid routines and motor skills.

I wanted to wait a while to write my take because I wanted to see how ASD communities reacted to this and as with everything autism, there has been a lot of disagreements. Some said this is intended to decrease ASD numbers, it is designed to kick aspergers off the list, it is this, that or the other. I really think the new DSM-5 is good for everyone. I advocated, really pushed and God knows gave my comments to the committee that was writing this, some of whom visited us at IACC. Some IACC members were heavily involved as well in preparing and giving advice.

The way I look at this is;

Let’s say you went to the ER (emergency room) and you had a bleeding arm then another patient came in who could not breathe. Who do you think will be seen first and treated – the patient with the more severe symptom of not breathing – right. Well for autism, for years treatment was provided to the less severe ASD patient while the more severe patient was on an endless wait list, discharged or never admitted.

Yes, all patients should get treatments but I really believe we should help those with the most need since they need to catch up more. And, this new diagnoses criteria will level the playing field or the treatment field to a more humane manner. I am excited about this and know that all kids and individuals will get services based on their need.

Isn’t that what we all want. I think so.

Thanks!

Above words are my opinion & do not reflect any committee or agency

As you all heard by now, Sadly – Governor Dayton of Minnesota picked his running mate and it is Tina Smith. Or as I like to call her Heartless Hammer Smith – (HH Smith)

What is even more sad is the fact that our state which calls itself progressive, moves forward and a party that claims to be inclusive never even thought or considered a MINORITY RUNNING MATE OR MINORITY LT GOVERNOR. Think about that the next time you cast your vote.

There are so many wrong reasons with HH Smith, I don’t even know where to start. Well – let’s start with Autism which is my passion and is sooooo personal to me as an autism mom. HH Smith told our community to take a flying leap back in 2011 when we asked her office if they intended to continue the great work by Governor Pawlenty’s health department. We were told Gov Dayton will be too busy for the next four years to meet with our autism parents or community. We were told, MDH is doing a good job and no autism research will be done. And, when we asked what exactly Minnesota department of health is doing that is good for autism – they could not come up with one example and just ignored the issue from there on because that is what HH Smith does best.

That is ignore, belittle, dismiss, disregard and disrespect those that either disagree with her or God forbid ask questions. Then it turns out Gov Dayton did have time for the wealthy Autism families twice and invited them to his office which he happily posted in his Facebook.

When we asked about autism disparity, instead of addressing it her then health policy adviser – Dan Pollock helped Rep Norton (the queen of autism disparity) write the very discriminatory amendment in health and human services finance committee in the house. Remember the one that said – let’s pay and cover autism therapy for the wealthier autism families who don’t even qualify for Medicaid and pay for it up to age 18. By the same token, for the low income autism families on Medicaid because of their income – their coverage would only be up to age 7. Can you imagine what goes through such person’s head, mind and soul to come up with two different policies. One for the haves and one for the have-nots. These are small children with a disability and to treat them differently was inhumane and selfish which is exactly what creates autism disparity – unequal access to the same therapies.

But that is what we would get if Gov Dayton wins a second term – A Lt Governor who is inhumane and selfish.

Furthermore, just recently, HH Smith made another insensitive comment when she said “I work because I am a Democrat woman”. Now what now? What the heck does that mean? So, all of the women who work at home and raise their children are not worthy or can’t be a good MN DFLer? You see if HH Smith disagrees with you for any reason – she will step in your head, heart and soul. And, she will do it with no care, no remorse & without blinking. She is as cold as ice and as heartless as a hammer. Another example; there is no African American policy adviser in her office because our advice and opinions are irrelevant. In addition, when HH Smith was the chief of staff for then Mayor RT of Mpls – she ruled the same way in Minneapolis City Hall and lacked compassion.

I beg you to take a real look at her record, her insensitive words and her actions towards stay home moms who work harder than any other women, minorities who have suffered under her iron fist rule and her disregard for anyone with a different idea. Imagine if you are not a democrat working woman? are you not a Minnesotan, not a woman, not a human being?

Ask yourself and please vote HH Smith and her backward moving Gov Dayton out in Nov 2014. Use your precious voice wisely and don’t be fooled by their exterior, look into their interior. It is empty, cold and careless towards your needs.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

The long awaited Autism Spectrum Disorder report on how and what states are covering was released by CMS (Center for Medicare and Medicaid Services) last week.

I for one have waited this report for a really long time and God knows asked for it forever. 

I wanted to see what and how CMS covers autism therapies, especially early intensive behavior therapy (ABA). What ages it covers for and how intensive in comparison to private insurance coverage. We know that about ½ of the people with Autism have Medicaid and it is important for CMS to have similar or close coverage for the thousands of low income autism families that depend on it.

In other words, if a state has private insurance coverage mandated by state legislature for children and/or adults with ASD, and it does not have similar coverage for children with Medicaid, then that is a recipe for disparity and bias policy.

This report lists which states have Autism Specific Medicaid Waivers, which states have ASD coverage under their 1915c waivers and which states have private insurance autism coverage. I think it really gives a detailed information on how states are doing in covering not just early intensive behavior therapy, but in the education system such as, preschool, school age, adolescents and adults. As you will see and as children get older, the services and resources are far, few and scarce. In fact, only few states have Medicaid Autism adult waivers which is very sad because these children will and do get older then what. What happens then?

As an Autism mom along with probably thousands in Minnesota and across the country, that is my biggest worry and fear. What will happen when my child gets older. What types of services will be available for him, what resources will be there, how will he be treated and how will society embrace adults with autism that are coming in high numbers. So many questions – so few answers for autism parents in Minnesota and nationwide.

Personally, I don’t think Minnesota and nationally – we have done a good job in addressing adults with autism issues. There are so many critical issues, such as – employment, housing, independent living, etc. And, with the exception of handful of states such as PA – the rest of the country is sleeping and missing in action including Minnesota. We have no ASD specific adult waiver, or even any real support once a child reaches 18 in Minnesota.

I hope people read this extensive CMS ASD report, it lists every state and their services. You can also just read about the state you live to see what services are provided there. For Minnesota – it has the information before our state legislature passed the Medical Assistance Autism early intervention therapy last year in 2013 legislative session. It also states that MN does not cover or pay for ABA (applied behavior analysis) therapy, but it does or did for the wealthy autism families on fee for service Medicaid while it denied (not anymore thanks to our advocacy and Amy Dawson’s lawsuit) low income managed care autism families. I think that was a step in the right direction of equality. Nevertheless, I think MN has a very long way to go since most children of all races are still not getting diagnosed until age 5 which is three years late. 

This of course is not just a DHS problem, but MDH (Minnesota Department of Health) problem, since MDH is charged with Assessment, Assurance & Policy part of public health, and assuring the public is aware of the medical conditions they have and what services are available. I think MDH has failed in this area under Governor Dayton and MDH Commissioner Ehlinger. There is one silver lining of hope here, if Governor Dayton whose other minority policies have also failed loses the election in 2014, we get not just a new Governor, but a new MDH Commissioner. Let’s remember to vote out Dayton in November.

I also think MDE (Minnesota Department of Education) Part C which is for early education for children with special health care needs such as autism has failed miserably. MDE Part C which is Federally funded is suppose to outreach and educate parents about their kids special education needs before the age of five. I would give them F- since most kids with ASD are not even getting diagnosed until age five. They are late, dis-organized, out of touch and too passive in outreach, education, enrollment and everything in between.

I am sure, I am pissing off Commissioner Cassellius whom I like and respect along with Assistant Commissioner Elia B, but if the buck stops with them, then they need to either fire or shake up Part C folks at MDE because they are doing a horrible job.

Finally, I really thank everyone at CMS tha
t worked on this report from the top – Administrator Marilyn T to everyone under her, especially director of children’s department – Cindy M. I really appreciate all of the work they have put in this report, especially John O who is a fellow IACC member. I am confident this report will help states and their leaders take a look and re-evaluate how they are doing in autism services and education because ignoring will not make the problem go away.

Here is the full report, make sure you have coffee and water because it is over 400 pages, but well worth the read.

Thanks!

As usual, above words are my opinion and do not reflect any committee or agency.

Idil – Somali Autism Mom & Minority Advocate

OK, So let’s explain this from the most welcoming, liberal, progressive and sooo moving forward folks. Hollywood and the Music industry that has awarded so many awards to African American artists fairly and justly. Oh wait……that is not correct. They usually and repeatedly snub them.

Alright, by now you either heard or watched the Grammys and how even for best Rap award went to a non Black artist. That is right, Rap music which was invented by African American musicians which is usually based on American urban life and its hardships. Not to mention the Grammys did not even had this award until Will Smith and his partner boycotted the grammys.

Rap Musicians boycott the Grammys:

By design, the Grammy is suppose to go to the musically talented person for their genre and not the most popular or big sales that is what American Music Awards are for. In other words, win by content rather than color or popularity. Well – that is not always the case in welcoming, moving forward and liberal Hollywood. The best and top awards usually go to those with the “right” color and not the right talent or music.

Here are some examples:

India Arie Speaks the truth about the Grammys:

Snubbed for his Skin Color and not his music. Please like me for my work – Kendrick Lamar:

How does this happen in 2014 really in progressive and welcoming music industry?

OK, now let’s move into Minnesota State Capitol where Abou Amara is the only African American Committee Administrator. That is right, out of all of the committees in the Senate, there is zero, zilch, nada person of color in a committee administrator position and in the MN House which has even more committees – there is only one, Abou Amara. Imagine that level of disconnect and dismissal. Committee Administrator has the ear and mind of the committee chair, they are the backbone of the chair and that committee. Nothing usually goes through without them. They sometimes are more powerful than the chair because they help him/her filter issues and information. Yet, a state and the party in control that tell us they are soooo welcoming, moving forward, soooo liberal could not find more than one minority person. Also, keep in mind they have increased the committees from the last party in control to give their own more opportunities. Yet, no equal opportunity for African Americans and other minorities. How sad and depressing.

Furthermore, Sen Bakk and Rep Murphy (leaders of the Minnesota Senate and House) want to spend over $80 million dollars for new chairs and parking space in a new building and get this – have zero money to fund Minnesota Department of Human Rights legislative bill that would assure state agencies are hiring people fairly. Oh – I don’t know maybe hire me by the content of my character and skill rather than my color or White Privilege. Oh no, Bakk and Murphy are opposed to this idea, that way Abou Amara would be lonely up there and no other Black person would be hired or even interviewed. Not to mention all of the state agencies that have embarrassingly low or non-existent minority leadership as assistant commissioners or staff. How sad but typical for Bakk and Murphy.

MN Senate and House leadership – Bakk and Murphy want and need new chairs and parking space at any cost – by any means necessary, even at the expense of improving human rights in Minnesota. What a surprise there, not really.

Let’s remember these are the politicians that many African Americans vote for because we think they are soooooo welcoming and move forward. If that is the case, why the double standard?

Why not approve the Human Rights bill supported by Council of Black Minnesotans and let the civil rights laws follow their intended hiring guidelines? Here is that human rights bill that no wants to push in this welcoming and moving forward state legislators:

As Caucus day is around the corner – ask yourself as you cast your vote for someone tha
t will probably forget about your concerns when they get to the state Capitol.

Vote Wisely and based on their record – not their sweet empty words and promises because that is what created this unequal access to employment and so many other areas in the first place.

Above words are my opinion and do not reflect any committee or agency.

Thanks!

Idil – Somali Autism Mom & Minority Advocate

I am happy to report that I had a really good closure with National Institute of Health which includes National Institute of Mental Health, National Institute of Environmental Health and Office of Minority Health at NIH along with Center for Disease Control.

I have asked (ok harassed) these Federal agencies to address autism in the Somali community for a really long time – years ever since back in 2008. And, they have simply been wonderful.

Where shall I start – back in 2008 when Governor Pawlenty’s health department did its first autism study in Somali kids – CDC folks were the wind beneath my wings. I would literally call them daily or weekly and ask for MDH to do this in a way that was culturally sensitive. Of course, this was much easier with Dr. Magnan in charge who let her researchers take the lead. And, Dr. Punyko is an amazing public health researcher and epidemiologist.

After that study was done, and the new Governor (Dayton – the man who could care less) came into power, I begged more and more for NIH and CDC to do because it was evident Dayton and MDH’s Dr. Ehlinger would not.  

To make a long story short, NIMH’s director Dr. Insel took the lead and asked other Federal agencies to come up with a plan. They did which is how the last UMN/CDC study was funded.

NIMH, NIEH, CDC, Office of Minority Health @ NIH and Autism Speaks all financially and with their technical expertise contributed.

The results of this study are very good and a good opening for next steps. But as I told NIH and CDC – I will not be advocating for those steps. First, I am bone tired, it ain’t easy to do autism advocacy, especially at the Federal level. I remember one time I went to IACC and on my way back home – I saw the director of CDC’s disability department, Dr. Boyle in Washington DC airport and I became a used car salesman. Really, I was so busy trying to persuade her to fund and do Somali autism research. She stopped me and said “Idil – are they paging you to go to your gate”. Yes, they were but I was lost in autism advocacy. There are tons of times similar where I would do whatever necessary to get autism in our community addressed at the Federal level. Another time was – Dr. Birnbaum, Director of NIEH was testifying in Congress in a committee co-chaired by Sen Amy K of Minn and I happen to see it on C-Span. I think I must have emailed and called Sen Amy’s legislative assistant a hundred times and kept asking please ask Dr. Birnbaum about autism in Somali community and what they intended to do about it.

Well, needless to say, Andrew probably was so annoyed by me he did and Sen Amy K did ask that question. I mean again I became a used car salesman and had to make the sale by any means necessary. Or when I would call director of Office of Autism Research at NIMH at home and again become a used car salesperson.

Now, as fun as those times were and even successful – I really have no more desire to repeat it. It takes a toll emotionally, mentally and physically. Besides, there are now lots of other Somali autism parents and advocates in Minnesota who I am hoping will continue this important work.

Plus, I think when I told NIMH, NIEH, AS and CDC that I would not be asking or advocating for the next step – they had a big sigh of relief because I am sure dealing with tired and frustrated autism mother is no day at the park.

At any rate, my advice would be for those going to do the next step to ask; why is autism so high in Somali American kids in Minneapolis, and more importantly why is it so severe at a higher rate. This could really open the door for many important autism research into the cause of autism. And, hopefully the cure and prevention of the symptoms of Autism.

I wish anyone who continues this work luck. And, I again thank Dr. Insel – director of NIMH, Dr. Daniels – Office of autism research at NIMH, Dr. Boyle, Dr. Allsopp and Dr. Wiggins – CDC, Dr. Lawler & Dr. Birnbaum – NIEH, Dr. Ruffin – OMH @ NIH and Dr. Dawson from Autism Speaks.

Thanks all very much for listening, validating and taking action!

Somali Autism Study as reported by Dr. Boyle at IACC on Jan 14, 2014

Above words are my opinion
and do not reflect any committee or agency.

Thanks!