Monthly Archives: January 2015

Minnesota Ranks 2nd Best State to Live – Yet Has Worst Stats for Racial Disparities

idilabdull | January 22nd, 2015
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Alright – so, every year around the state of the union – some kind of survey or study comes out telling us what the quality of each state is in the United States. And, Minnesota – the land of kazillian lakes has always landed in top ten. This year it is number two best state to live and tied with Vermont in education. This caught my eye, best education – what?

If you are a minority especially Black and Brown and have children in school in Minnesota in particular in Minneapolis – then you know they are failing or about to fail. The graduation rate for minority kids in Minnesota is one of the worst in the country, yet MN ranks high in education. WTF? In other words, the achievement gap between white and minority students is so high here that it makes one wonder – why?

Furthermore, while Minnesota enjoys one of the best unemployment rate in the country – Black and Brown unemployment is the highest – WTF? Why such a disconnect and where is the love for minority Minnesotans? Minnesota also has one of the worst racial disparity for the justice system. Again, WTF?

This means Minnesota Department of Health has persistently failed Black and Brown health. This means Minnesota department of employment and economic development has failed Minnesota’s Black and Brown workforce and it means Minnesota Department of Education has failed to assure every child gets FAPE (free and appropriate public education). Above all MN DFLer’s that mostly control these agencies have failed their Black and Brown voters.

Nevertheless, this failure did not stop MN DFL chair or as I like to call him Don King of MN politics claim credit for the good things here while ignoring the failures of their Black and Brown voters in education, health, employment and so much more. I remember the first I met MN DFL chair – it was me and few other Somali autism parents years ago right after Gov Dayton had won first time. We wanted to see why his health administration was ignoring autism and not doing any autism research. I remember one of the parents told him a story about when her car was totaled and the insurance rep told her that – her first response was autism already totaled my life. Another parent who had two autistic kids told him how one sleeps from 9pm til 1am and the other one sleeps 1am til 6am, and how bone tired he was. And, I remember I was watching Mr. DFL chair’s body language and he did not even blink once or have one iota of emotion or empathy for those parents that were telling him their struggles with autism. He reminded me of Don King the boxing promoter who just promoted his fighters despite how dangerous their job was by lacking empathy and human emotion.

The state of autism in Minnesota – I think DHS and MDE are doing much better than MDH. We are definitely better off than we were last year, but there is always room for improvement. At least in autism I and few other minority parents will fight with tooth and nail for equality, but for other areas – I really hope Black and Brown Minnesotans wake the heck up and fight racial inequality through policy changes. That is the best way to beat racial disparity.

Outgoing funny man Letterman said it best.

Structural racism blamed for some of our state’s persistent racial health disparity. If you don’t know what structural racism is take a look at your office tomorrow or leadership in your next meeting if no one is Black or Brown – that is the problem and structural racism. Then read racism without racist book and make a change starting with your office.

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

Idil – Somali Autism Mom & Minority Advocate

Category: My two cents - ok 1 1/2 cents

Marilyn Tavenner is Leaving CMS – This is sad news for Autism Families

idilabdull | January 18th, 2015
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Alright – so, maybe not in hillbilly land of 10,000 lakes knows this or even cares – but CMS (Centers for Medicare and Medicaid) administrator announced that she is leaving CMS after Congressman Darell Issa’s committee constantly kept harassing her. Let’s put this in an autism context.

Darrell Issa was the chair of the very powerful committee of house oversight and government reform in Congress who did that one autism hearing couple of years ago – the Federal government’s response to autism. In this committee, Issa calls all White men to talk about autism, not one single minority or woman was part of that panel. When I asked them, why the Sandra Fluke thing again – their response was they did not intentionally exclude autism mothers and minorities, right – I did not believe them. In the interest of fairness, minority ranking Cummings from MD had the ability to invite and his office also did not even think of the lack of diversity in that panel.

Issa also got campaign donation from autism groups including a MN ABA owner as noted and blogged many times in many autism national blogs. The good news is Issa is no longer committee chair – goodbye and good riddance is my take. The new chair seems low key, but I don’t have enough information on how if any his autism actions will be different.

Tavenner on the other hand – I respect and admire her. She along with her team starting with Mann are the reason – millions of autism families will now have access to autism interventions under EPSDT. Before Tavenner, CMS was led by Berkwic from MA. I have to say, I had such a hard time advocating in his office even after the White House sent couple of emails on my behalf. (I know how weird is it the White House validated my advocacy) Berkwic’s office always told me CMS can not authorize ABA therapy unless Congress changes rules for EPSDT. So, at that time – I advocated to then not have ABA coverage under ACA because I thought that would create more unequal and racial disparity. No, it was not easy since Autism Speaks and every other big organization wanted ABA to be part of the new health care law. Their take was once we pay for it under the private market then it will automatically trickle down to the poor and Medicaid. Of course that is wrong and stupid – since when has giving more to the wealthy trickled down to the poor.

Needless to say, we prevailed then and ABA coverage was taken out of ACA by the Obama Administration. My take here to the Obama Administration was if you want to force private insurance companies to cover ABA therapy then force CMS to cover ABA for the poor who are disproportionately minorities, otherwise it is unfair, unjust, un-equal and un-American. And what do you know – they listened and got the message, awesome and I am grateful. At the time, they said no coverage for ABA in private insurance or Medicaid. In other words, do it for all kids or don’t do it for any, especially those that can afford the therapy.

Then came Tavenner so I decided to ask the same questions again of can CMS cover ABA under EPSDT. And as we all know July of 2014 – CMS announced – Yes, they can!…..drum roll please, this was probably the happiest day in my little advocacy journey. The icing on the cake – CMS announced this fantastic news on the last day at IACC’s full meeting. It did not get better than that. I think I hugged everyone from CMS that day.

As a result, I have the highest respect for Marilyn Tavenner and so should every autism family. Without her leadership mixed with kindness and compassion – we would not have this wonderful coverage for all children with autism.

It saddens me that she is leaving CMS next month. I will for sure miss her! And, I thank her so much from the bottom of my heart for listening, validating and always respecting autism families. She is one of a kind!!!

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

Idil – Somali Autism Mom & Minority Advocate

 

 

Category: Disparity & Politics

John Beohner Remains Speaker in Congress – My Take – that is Fantastic

idilabdull | January 18th, 2015
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Alright – so, by now we should all know that Congress is where all autism everything comes from whether it is research, services, resources, surveillance, etc and etc.

And, in order for any autism bill or autism funding to pass – it must go through the U.S House of Representatives. This includes state funding for autism services, research, and therapies. For example, ABA funding is both Federal from Centers for Medicaid and Medicare and state. In Minnesota ABA is half funded by CMS and half by Minnesota, which means for DHS to pay for ABA – it must be matched by CMS, which gets their funding by Congress. Another example, Minnesota department of health gets their majority of their funding from the Federal government from congressionally approved sources. MDH’s child and maternal health which autism is under is funded by block grants from Health Resources and Services Administration who get their funding from Congress. In other words, every area in autism depends on Congressional funding and allocation of resources.

Above reasons is why I contacted Speaker Boehner’s office back in 2011 when I was advocating for the Combating autism act of 2011. Speaker Boehner has been one of the easiest people for me to advocate in Congress. There was hardly any drama or arrogance in his office or within his staff. In fact, I got below letter from him and really how many autism advocates can say the Speaker of the U.S House of Representatives sent them a letter. Recently, Speaker Boehner also supported the ABLE Act that just passed which will help all people with disabilities.

 

Dear Idil:

Thank you for contacting me regarding autism care and research.  I appreciate hearing from you.

As you know, autism is a complex developmental disorder affecting many people today.  This life-long disorder deprives children of many abilities, such as interacting with others in ordinary ways, understanding and communicating with others, and having normal reasoning skills.  The number of people afflicted with the disorder grows every day with no known cure or cause.  Statistics state that nearly one in every 110 children now live with autism.  This disorder leaves permanent effects on the children and their families.

The Interagency Autism Coordinating Committee (IACC) coordinates efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). The IACC mission is to: 1) facilitate the efficient and effective exchange of information on ASD activities among the member agencies; 2) coordinate ASD-related activities; and 3) increase public understanding of the member agencies’ activities, programs, policies, and research by providing a public forum for discussions related to ASD research, screening, education, and interventions.

You may be interested to know that funding for autism programs at the Centers for Disease Control and Prevention (CDC) has increased from less than $300,000 in 1995 to $22.1 million in 2011.  During that same period autism funding at the National Institutes of Health (NIH) increased from $10.5 million in 1995 to an estimated $160 million in 2011.  In addition, the Congressionally Directed Medical Research Program (CDMRP) at the Department of Defense (DoD) supports research on a variety of diseases and disorders.  The program administers programs funding on autism, multiple sclerosis, breast cancer, prostate cancer, ovarian cancer, chronic myelogenous leukemia, neurofibromatosis, and tuberous sclerosis research, among others. From Fiscal Year 1992 (FY92) through FY10, CDMRP has received $6 billion in federal funding for research.  CDMRP is funded at $394.4 million for FY11, including $6.4 million for the autism research program.  From FY07 through FY10, the autism research program has received $29.9 million in federal funding.

Representative Chris Smith (R-NJ) has sponsored a bill to confront the challenges of autism, H.R. 2005, the Combating Autism Reauthorization Act of 2011.  This legislation would reauthorize the Combating Autism Act for an additional three years, through September 30, 2014.  This bill has been referred to the House Committee on Energy and Commerce, who held a legislative hearing in July.  As this bill moves through the Committee, rest assured that I will keep your support for autism care and research in mind.

Thank you again for contacting me with your thoughts.  Please don’t hesitate to inform me of your concerns in the future.  To sign up for email updates, I invite you to visit my website at http://johnboehner.house.gov.

 

Sincerely,

John A. Boehner

 

Therefore, I will always support Speaker Boehner and I am glad that he won. I know that we in the autism community have a friend in Speaker John Boehner. It is worth noting that Minnesota Republican members in Congress voted for him, which is great. Here is those that voted for him and the measly couple of dozen that did not. What I found interesting was that Minority leader Nancy Pelosi also had some defectors, but no one in the media even looked twice at them. By the same token, the 25 out of hundreds that voted against Boehner was all big news. Unhhh – ain’t that interesting, how selective liberal media is in their news reporting. I wonder how that relates to autism, think about it.

Above words do not reflect any candidate, agency or committee

Idil – Somali Autism Mom & Minority Advocate

Category: Autism Policy

Diversity in Autism Research is a Must Plus Answers to Questions I get asked by Autism Researchers and Students

idilabdull | January 3rd, 2015
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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

Category: My two cents