Monthly Archives: April 2013

Among the speakers were researchers from UCLA and Boston University who talked about studies they are doing on minimally verbal autism children. I think there is a great and huge need in this area and I am very interested in this kind of research. 

We were also suppose to get one of my favorite autism moms – Portia Iversen, but due to some scheduling conflict was not able to come. This mom solely got Soma into the U.S and introduced RPM therapy for thousands of children who are minimally verbal, but are very smart and can learn academics. I simply can’t wait to meet this mom and hope we invite her back.

We also heard from the researchers of the recent parent survey from HRSA which stated autism is now one in 50 for school aged children in the U.S.A. 

We also heard and read written and oral public comments, one of which showed us a video of children who have severe behavior problems, bolt and are the most vulnerable. I think this really was significant and showed the need for more support for children with severe autism who also have medical underlying issues. 

The next meeting is on July 9th – stay tuned for that. And, if you live in Minnesota and write a comment and would like me to bring it up, please let me know. Plus, I really encourage all parents to keep writing public comments or come for the oral. It does really make a difference and I assure you all of the U.S Federal agencies do listen and take it heart. It also can result in policy or research funding as well as it did for the Somali autism study back in 2010.

Thanks and God Bless!

Idil – Somali Autism Mom

We heard from the school district’s autism program, Hennepin county, two school board members, University of Minnesota and Minnesota department of health about what they do and available services.

As usual, parents told their devastating stories of not getting early intervention therapies such ABA or speech therapy, not getting medical diagnoses on time, lack of information or even knowing what to ask. One mom suggested that these entities don’t just come once a year, but more often and give adequate resources to Somali agencies so that they educate their community.

I think the most questions were directed at Minnesota department of health and what causes autism, why is it high in our children. One mom broke my heart and said my son has autism who is 4 and I have a 6 month old baby and I am so worried he will get autism too. 

As usual MDH had no answer or plan to help these families. I wonder if they even understand their role as being the health department that is suppose to address all health needs of all Minnesotans.

The vaccine question came back and MDH said while we don’t know what causes autism, we don’t tell you about early interventions, or county resources – we know for sure it is not the vaccines. I am not sure if any parent bought that answer. 

I am really struggling what to make of the current leadership at MDH. If you talk to Commissioner Ehlinger – he says he cares and even invited me to lunch. We had a nice chat. But, then no funds were allocated for any autism in their budget request this year. 

MDH keeps telling us they are not qualified to do any research, but we see other health departments like Wisconsin take initiative and address autism. 

MDH does not really go to IMFAR or any other autism conferences like other state health department do, they never applied the CDC ADDM system, they don’t have the state plan system from HRSA, they don’t have any Somali staff in their child and maternal health department, I can write more – but won’t.

I guess I trying to understand Commissioner Ehlinger – there must be something he can do.

At some point, MDH has to take a bigger responsibility or there will be unintended public health crises like the measles outbreak couple of years ago, because we don’t have an answer only works if you are working on something.

At this point, we can only hope and keep calling Governor Dayton who has not really addressed or asked his administration to look into autism and our community. Below is his promise if he won last time and he is up for election next year. We need to hold him accountable to his policies or lack thereof.

God Bless!

Idil – Somali Autism Mom

As I said in my previous blog, I think Rep. Liebling is power hungry, overrated and arrogant yet ignorant MN state legislator. Unfortunately, during this session – there are many like her. The difference is I have not had the un-pleasure of testifying in their committees this year as I had to in Rep. Liebling’s committee.

So, in our IACC meeting last week at NIH head-quarters in Bethesda, Maryland, we had as usual and by law time for public comments. First, I must say we rarely get comments that say – Yay, the federal government is doing an awesome job, good maybe but never awesome.

We usually get comments and questions from frustrated, tired and pissed off parents, advocates and researchers though they are a little more polite. We never take it personally and understand that as representatives of a federal committee – our job is not to like the person, become their friend, agree with their views, etc. It is rather to listen with an open mind, validate objectively and vote based on that and current facts. 

Sometimes, some of the oral comments which are in person are against specific people even asking them to be fired or worse. However, I have never seen anyone in this committee say don’t talk to us like that, don’t send us your comments or you are not helping your cause by speaking your mind. I think what makes this country the envy and the hope of the world is the ability for its citizens to exercise ultimate political freedom without fear. It is why I endure all of its many other flaws especially when you are a minority. Because at least we are minorities with equal rights – even if there are sometimes subtle policies that discriminate against us on many levels.

OK, so what does this have to do with MN State Rep. Liebling? Everything.

Rep. Liebling (DFL from Rochester) decided to take it personally, use her committee membership power and maybe her color to try to belittle my message by being disrespectful and dismissive. She is not the chair and in my opinion, the chair could have apologized for her and could have told me even if they don’t like or agree with my message, it was my right to make it. Sadly, Rep. Huntley did not. He is usually low key and not flamboyant at all, but sometimes he lets undisciplined, power hungry, bias and cold members speak to us a little too foul. 

While, I personally like Rep. Huntley – I think the theory of tell me about your friends and I will tell you about you still stands. He should have not tolerated such Mussolini like behavior from Rep. Liebling who often has toddler tantrums even if you don’t address her as Madam chair or the other representatives ask the witness questions and forget to go through her.

I really thank many of you who came to me afterwards and said she should have kept her mouth shut unless it was related to my testimony. I really appreciate that, but please don’t worry – elected officials like her are who we run from in our dictatorship countries. 

I for one think Rep. Liebling is just confused, bias and prejudice at her core. Regardless of her NAACP membership which is really worthless, her policies have made no significant changes towards positive in any meaningful way that uplifted people of color in Minnesota. I think her lousy record speaks for itself and her words are useless to me, though I must say they have energized me to the unth level for the last couple of days to advocate even more. I will be on Somali TV next week to ask anyone from Somalia that lives in Rochester, MN who wants to run against her next year that I will help and campaign endlessly, because if we don’t have people that will care for our issues, then our concerns will never get solved. Elections in this state especially districts are won as little as few hundred votes, and some of those districts have thousands of Somalis. 

I assure you our voices and our votes CAN make a difference. We just have to vote for the right person. The goal is to run against someone like her and not like Rep. Clark who is amazingly kind and inclusive. How can two people represent the same party, one Mussolini and the other Mother Teresa). On a related note, please support the two Somalis running for Mpls city council. We have the votes folks, we just need the will to believe. 

God Bless!

Idil – Somali Autism Mom

The hearing starts on time and right away the Chair Sen. Sheran explains that the reason for not having lots of senators is because it is the last day to get bills heard and committee members are in other committees. Then, Sen Eaton explains why this expensive, not based on any science/research and really unfair bill should go through this committee which she is a member of.

Then, the over paid hot shot lobbyist tells us why it should pass and uses the really famous words of “fair share”. Then we hear from an autism mom and autistic person.

Then, Sen Sheran calls me for the opposing side, what – I am the first to speak. I like her already. 

Oh, and – Sen Sheran told those that spoke before me when their time was up. This never happened in any other committee – they were mostly given ample time. I really like Sen Sheran now! Treat all of the testifyers equally. OK, so Rep Huntley in HHS Finance also gave us time to finish our testimonies. (He is usually quite, but at least hears your concerns).

I make my statement of there is no controlled trial study that says ABA of unlimited hours for unlimited age – forever. Plus, how this will create two tiered access to autism therapy, one for the haves and one for the have nots. And, if this bill passes as is – no provider will take the MA/Medicaid kid with so many DHS oversight and rules when can they take the unlimited & unchecked private insurance kid. Hence, health disparity for low income MA/Medicaid autism kids who are disproportionately minorities.

Here is the best part, everyone in the committee has so many questions and comments of why mention a specific provider, medically necessary is too broad and too many unqualified professionals prescribing this really expensive therapy which the bill says has no limit of any kind. I love this committee – seriously. There is a God and he is talking through them. They even ask has the MN state legislative autism task force endorse this. OMG – are they for real.

Heck no, because we (MN autism task force) which I am a member of has never ever ever discussed this bill. Sen Eaton or the Queen of this bill Rep. Norton never brought it to us. One of the senators Sen Rosen suggests to the author to have that discussion. 

My favorite part was when Jay from Medica said the cost and the concerns and the hot shot lobbyist tried to answer and Sen Sheran so elequontly put him in his place. Really, there is a God!

In sum, there were amendments offered and concerns made especially when paying for the public MA program and to assure equality. It passed with more questions and still crawling which a good sign that state legislatures are having concerns with cost, quality and its unequal access. 

It was referred to Sen. Tony Lourey who by the way voted against this same bill with a different number in 2010 when Sen. Berglin was the chair whom I totally miss. How can he possibly be for it now since low income and minority autism families are still being left in the cold. Plus, I think Sen Lourey is one of very few in the senate who is always fair to all of the sides. And, wait for it …. his CA is very much interested in helping the poor get quality health care and there is no drama with his LA. There has to be a God here!

In a nutshell, there would be no way two different kinds of autism coverage legislation would pass through his committee that would say the private wealthier autism family will have unlimited and very expensive coverage. By the same token, the low income and most likely minority autism family will have limited and cheap autism therapy coverage. Plus, his staff – simply lovely!

Now, I have learned in my minute and half of advocating in MN state capitol – to never blink or get too cocky. So, I am cautiously optimistic – but fully awake and watching how all of this plays out. The other good thing is that politically one party is in control of all branches of state government and if disparity and unequal access to autism services pass, they would have to own it and explain it. 

I also really really really hope the author of this bill in the senate – Senate Eaton gets asked by her largely African American voters why she keeps leaving their issues out. Shouldn’t an elected officials support their voters issues. Go figure – taking votes for granted again.

Thanks

Idil – Somali Autism Mom & Minority Advocate

On April 2, 2013 – I was able to say my son has autism without shame, hesitation and reservation at the United Nations World Autism Awareness Day Event (WAAD) in New York. This should give some hope to any Somali mom that is struggling with coming from the denial stage. All children are a gift from God and we should take the stigma and shame from all mental health conditions in Somalia and worldwide.

I must say, I was extremely nervous when I was invited to speak at the United Nations World Autism day in 2013 – even more than when I was invited by President Obama’s administration to the 2011 White House Autism Conference Event. 

I knew there would be other countries listening and I had to be diplomatic which is not my forte. I think I called the U.N representative a million times because I was so nervous.

The day started with breakfast and conversation with my good friend from the New York Times who knew me when it was very difficult to admit my son’s autism. There were three panels – morning panel, noon panel and afternoon panel which is the one I spoke. First, we heard a message from U.N Secretary General Ban Ki-Moon (from South Korea) to the audience by his wife. Everyone spoke about raising more autism awareness and changing that awareness to action. Many said we need to have early intervention by multidisciplinary team in a manner that is based on research, culturally sensitive and is economically feasible. Some people spoke about the cost of early intervention in some countries whereby the cost in one month is more than parents make in a year.  

Some of my favorite lines were about the racial, economic and ethnic disparities for autism children around the Globe, how to be the squeaky wheel advocate for your child, assuring more inclusion in schools and all community settings for all people with autism and not using the terms low or high functioning because there are many autistic individuals who are nonverbal, but are highly articulate. The lack of verbal communication does not correlate with the cognitive functioning of the person, nor does it mean that person cannot communicate via other means such as sign, devices or written word. I agree with this 100% and Neal Katz was the perfect example. This nonverbal young man was articulate, charming and funny who leads a normal life.

I was glad that one of the speakers actress Holly Robinson-Peete from Panel one who is an African American spoke about the persistent racial and ethnic disparity in services and early intervention. 

I hope other minority autism parents such as D.L. Hughley, Toni Braxton and Tisha Campbell will do the same given that their voices are powerful and can change disparity policies for minority children with autism. One example is assuring equal early intervention coverage for both private and public insurance at the same-time in all of the states or nationally.

I suggested few things to member nations and internationally;

1. To establish Autism Professionals without Borders (similar to the Doctors without Borders) whereby SLP, OT, Behavior Therapist, Educators and Psychologist from developed nations can either volunteer or intern in developing nations.

2. For developed nations or a Philanthropist to start Global Autism Website which will have United Nations member Nations and have autism signs, symptoms and specific early intervention strategies for parents, family, caregivers and professionals around the world to utilize via the internet. 

In sum, I would like to thank everyone at the United Nations that made this day possible, specifically Jacqueline Aidenbaum who was behind establishing U.N World Autism Day resolution (62/139) sponsored by Qatar that passed at the U.N years ago unanimously. 

Idil – Somali Autism Mom