Monthly Archives: March 2014

Comments Off on Many MN DFLers To MN Minorities – Contain or Eliminate, Pick One

If you read this blog then you know, I grew up in the East Coast and was a Tip O’Neill/Dukakis/Ferraro hard core DFL that is until I met the likes of Rep Liebling, Norton, Rep Michael Nelson, Sen Eaton, Sen Clausen, Sen Cohen, Sen Franken, Gov Dayton and so many others like them in Minnesota after I became an autism advocate in 2010. Seriously, I get hives from their lack of tangible minority community based policies.

These politicians give a bad name to the party of Sen Ted Kennedy and Sen Wellstone – they either want to contain minority issues and concerns or eliminate them. For example, MN DFL Chair, Mr Martin who is so savvy with his words and can sell water to a drowning minority Minnesotan always comes to our community preaching his party is for equality, fairness and sharing resources with communities of color. And, that we should hold them accountable.

The problem is when you hold them accountable to their votes, policies or lack thereof – they try to contain or eliminate. In the area of autism and Somali community, the last study was done by Gov Pawlenty and his health administration. The last Somali, Latino and Hmong study funded was by Sen Hann, Senjem, Rep Gottwalt, Lohmer, Mack, Gruenhagen, and Rep Abeler all R’s. The initial letters and help for our Federal advocacy came from Congressman Kline, Paulsen, Sen Coleman and Bachmann, all R’s.

By the same token, so many bias and prejudice legislations have been introduced by Norton, Eaton, Clausen, Cohen, Huntley that take resources away from the poor, low income and minority autism families and give it to the already buttered middle/upper income autism families. In addition, current MDH Commissioner has refused to do any autism research and Gov Dayton just ignores all Somali autism problems. Don’t waste your next vote on Franken, Dayton, Norton, Eaton, or Liebling – please I beg you. Also, did you know that Sen Cohen is the Chair for Senate Finance Committee where all bills that have a fiscal note go through is also a board member of the struggling Confederation Somali Community of Minnesota. If this was not all sadly true, it would’ve made a Comedy Central – John Stewart funny sketch or a Loren Michael SNL monologue, maybe Franken can use it when we send him back to SNL this year, God Willing.

In other words, the party that so many Minority Minnesotans vote for and put in a position of power contain our issues to limited and useless areas such as creating more diversity task forces that only has minorities and eliminate mainstream autism committees if it has minority voices, especially if we God forbid disagree with their policies.

Think about that for a minute as this is an election year and they don’t win by landslide votes – rather couple of hundred votes in many districts to several thousand votes statewide. Then, ask yourself if you are a Somali, Hmong, Latino, African American, or any other minority – why should you vote for politicians that ignore, belittle and dismiss your communities through containment or elimination.

Another good example of containment or elimination in addition to Somali autism is all of the legislations recommended by the Council of Black Minnesotans that have more DLF authors than a kid in a candy store, yet none of them seem to have moved beyond meaningless, photo op hearings. For instance, SF 2730 authored by Sen Eaton if you can believe it – I wonder if her left hand knows what her right hand is doing. On one side she wants to eliminate and silence minority autism families, on the other hand she pretends to care and authors the human rights bill. Then, she says there is no money and it is too late, blah & blah. How come she was able to push SF 314 last year which wanted …..get this over $25 million from HHS budget to give it to upper/middle income autism families. But, she can’t find funds or resources for Minnesota department of human rights to assure state agencies are actually hiring fairly and equally and following equal employment laws. Oh please, we are a lot of things in minority-ville, stupid is not one of them. Sen Eaton is not interested in equality or fairness, just look at the bills she pushes. It doesn’t take a rocket scientist to figure that out.


Anyway, SF 2730 when approved can be the cornerstone and the foundation to assure all state agencies, especially DHS, MDH, MDE, DEED and others hire and recruit employees and leadership from communities of color. There are hardly any – zero person of color that represents MDH and DHS in state legislature, yet these agencies are in charge of low income families health. They usually hire 20 or 30+ Caucasian women who has never even been on foot in south or north Minneapolis yet is arrogant enough to think she can speak for us.

Therefore, to MN DFLers – at least those mentioned above, we reject your failed policies & your failed hiring practices, and we will get smarter and not keep circling D’s in voting ballots. We will have different choices including nurturing our own such as Abdi Warsame and Mohamud Noor to take you out in ward
by ward, then district by district to even higher offices across the state. It is possible in case you are thinking of underestimating our voting power.

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Sen Eaton of District 40 Enhances Minnesota’s Institutional Racism in Mental Health

Alright, first – let’s explain to those that are not minority what institutional racism is and how it works. For those that are minorities in Minnesota – you are living in it, even if you don’t realize it.


According to Urban DictionaryInstitutionalized Racism is the process of purposely discriminating against certain groups of people through the use of biased laws or practices. Often, institutionalized racism is subtle and manifests itself in seemingly innocuous ways, but its effects are anything but subtle. Institutional racism as it was originally introduced by Black Power activists can also mean inequality based on race through social, economical and political bias policies.


Therefore, Institutional Racism creates health disparity, education gap, etc. We know that Minnesota has horrible records in everything for minorities – hopefully we are not asking Jack or Jill for any proof.


Sen Eaton who represents a large minority in her district had a bill today in health and human services finance committee SF 1684 that wants to provide better mental illness treatments and prevention. As I sat there listening to her, then to NAMI representative talk about the need then came a caucasian mom who talked about her 29 year old son who went through many mental illness episodes and how the police and mental health community intervened and how well he is doing now.


As one of very few Blacks in these too White health committees, I could not help but testify even though it is not an area I know or even understand too well. But how do you sit through that and not imagine if that 29 year old was an African American man with a mental illness would have been shot by the same police who saved the Caucasian patient or ended up in the criminal system if he had the same violent mental crises.


Yet, Sen Eaton again neglected to even engage and get input from her minority voters, from any other communities of color including Somalis who unfortunately are suffering with a troubling rise of mental health crises. This kind of out of touch, arrogant, dismissing and belittling the needs of communities of color is what creates unequal access which then creates Institutional Racism. Policy makers like Sen Eaton who also wants to dismantle the state autism task force in light of yesterday’s new CDC autism numbers that have increased 30% nationwide has done it again, and enhanced Institutional Racism by writing policies that would affect communities of color without their input or engagement.


In other words, if SF 1864 passes in its current language, there will be no culturally responsive training, treatment or prevention for the 29 year old Black or Latino man who has a mental illness. He will most likely end up dead or arrested. I really hope another Senator adds more inclusive language that assures treatment and prevention is culturally and linguistically appropriate so that irrespective of your race or ethnicity – your mental health condition is treated equally. Imagine if Sen Eaton walked on the ground and actually visited Hennepin County mental illness center where there are many Somalis and other minorities suffering with mental illness, or read this report, then wrote her legislation in a more inclusive and kind way. Instead, Sen Eaton chose again to dismiss and disregard the needs of her minority constituents.


I hope my fellow Somalis and other minorities think about that as we go the polls again this year because unless we clean the seeds – we will never get fruits that are beneficial to our communities. In order to get good fruits, you must plant great seeds and eliminate bad ones like Sen Eaton by voting her out so that she never has the opportunity to create or enhance Institutional Racism through bias and prejudice policies.


Below are some books that I would recommend many MN DFLers to read because so many of them seem to think health disparity or education creates itself. It does not – it was created and is maintained by your bad, failed and belittling policies. Why should we vote for you, if your policies don’t address our concerns?


Here is the language of this bill SF 1864 and notice diversity or cultural responsive is not required:

Racism Without Racists by Author Eduardo Bonilla-Silva:

White Privilege Explained by Tim Wise – Maybe he can educate MN DFLers:


And, if you are still under the delusion that institutional racism does not exist, then read Here:


Or Here: Now the difference between back then and now is, back then they did it to your face and prayed on our lack of knowledge and understanding of what the racists were doing. Today, they do it through bills and legislations, and they still pray on our lack of knowledge and understanding of the legislative system. For example, if you go to any health and human services committee in Minnesota capitol and the room is full, yet no person of color is there. Just look at how there is no Black policy adviser for health or education for Gov Dayton of Minn, Senate Majority leader Bakk, MN House Speaker Thissen or Asst Majority Murphy. In other words, keep us out of the loop and create bias policies that hinder and neglect our health. 


The other difference between today and back then is TODAY – we have the voting power and right to kick them to the curve and elect folks that reflect us and will uplift our communities. 

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on CDC Releases New Numbers 1 in 68 Kids in US Have Autism 30% Jump From 1 in 88

Today was a busy day for Autism, CDC (Center For Disease Control) released new autism numbers through their eleven ADDM (Autism Developmental Disabilities Monitoring) system. The new ASD (Autism Spectrum Disorder) rates increased by about 30% from 1 in 88 to 1 in 68.

In other words, 1 in every 68 U.S children have a diagnoses of Autism based on records of eight year olds in eleven states using the ADDM method. New Jersey had the highest and Alabama had the lowest. Note – Minnesota does not have the ADDM surveillance system or even applied for it at CDC. Maybe they will this year since our Somali autism study that came out in December of 2013 used the ADDM method which now gives our state some experience in autism surveillance.

Right away, autism bloggers, news makers, public health officials and advocates stated their views ranging from better diagnoses to actual higher incidence cases to more awareness of autism now as being the reason for the new higher ASD numbers. Personally, I am not sure how I feel about this. I understand there is clearly more awareness, maybe even doctors are diagnosing more as a result of that awareness. I just wonder if that is the sole reason for the increase. If such is the case then where are all of the adults with autism especially those on the classic or severe end of the spectrum. Of course, we don’t have adult autism surveillance system since ADDM is only for children.

However, in our Somali community whereby majority of our children with autism are nonverbal, if autism existed and we just didn’t see it – where are the nonverbal adults. I have never seen a nonverbal Somali that is thirty or forty years old. Autism is not a medical condition that one could say – well maybe they died at birth or young. Therefore, we would have seen Somali adults born and raised in Somalia who are nonverbal. I just don’t see that.

I know – everyone has their take and everything autism is always controversial, exhausting and diverse. Nevertheless, I think there is a different factor for this increase that keeps only getting higher and higher. There has to be some genetic component when added to some environmental factor is triggering autism. Which gene and which environment is the million dollar question that lies heavy on autism researchers and parents alike.

Yes, I know there are those that will say – my child was just fine until I did xyz and that caused autism. I am not sure if it is that simple either. I mean think about it, the human brain is so complex, confusing and really not understood fully yet. To say it is only an outside environmental factor can not justify the increase.

I saw a lot of blogs that blamed the president and CDC today which I can totally understand. However, in his defense, I think President Obama’s Brain Initiative that the White House announced last year’s world autism day might be the best vehicle to get us closer to even narrowing of a cause. I think a cure of the symptoms and which therapies are best might be years away, if not decades.

One thing that I did not notice in today’s autism news and blogs from at least the Federal government and our MN state health department was a sense of panic and urgency. Autism was 1 in 10,000 not long ago in our lifetime and today it is 1 in 68. I think that calls panic and distress from state and federal public health folks. Unless they are waiting when it is 1 in 2. We need as a nation and as a state a holistic and tangible way to deal with and support autistic children, adults and families. And I really did not see that level of hitting the public health panic mode.

In fact, our governor or our state health department commissioner did not even blink at the new numbers. I think that is sad – their inability to assume business as usual when our lives are nothing but business as usual.

Below are some information on today’s news.

CDC Releases New Autism Numbers:

U.S Department launches new watch me thrive program:

ACF Blog:

And, our IACC Chair Dr. Insel & Director of NIMH did a wonderful and thoughtful Post on his Blog:

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

Thanks!

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Commissioner Ehlinger Please “Fire” MDH Autism Department Head – Ms. Dalbec

I know why such harsh request – before you say blah and blah. Let’s just look at some history of how other autism moms and bloggers have always asked similar requests since the beginning of time for those in charge of autism in state and/or federal levels to be fired.

CDC director and most CDC autism folks have been at the receiving end of this. NIH and NIMH probably daily an autism parent or blogger is calling for their firing. Even Autism Speaks leadership is asked to fire someone or other including me which was Peter Bell.

Thank God – he quit or maybe got fired – who cares, he is gone now from being the director in charge of all family engagement and autism policies at Autism Speaks. There is even rumor Autism Speaks’s previous president Mark R whom I personally liked was canned.

Then there are those that disagree most folks at public committees including IACC, some even protested when I was nominated by Sec Sebelius saying I was a government puppet.

So, I totally get it and I can take it because autism is emotional, complex, confusing, diverse, full of disagreement and heartbreaking. It ain’t easy, but for those of us that are parents – we simply have no other choice but to walk in this heat.

Now, let’s go back to MDH (Minnesota Department of Health) and their department in charge of children with special health care needs which includes autism.


First, Ms. Dalbec does a horrible job in community outreach. She has not done any.


2nd, Ms. Dalbec is the person behind MDH refusing to share any resources for autism from HRSA autism grant in 2013 with minority based agencies.


3rd, After years of asking – MDH website and phone line still fails to meet the Federal CLAS guidelines (culturally and linguistically appropriate services) In other words, if you take Federal funds which MDH does then they should have a phone line and a section in their site for non speaking English folks. They don’t and Ms. Dalbec is totally clueless about this.


4th, More Somalis and others are afraid of immunizations and have made the connection to autism which means Ms. Dalbec has failed explaining it well and providing information on it.


5th, Ms. Dalbec apparently did not understand the difference between managed care and fee for service autism services. So, how can MDH really be in charge of explaining services if their leader herself does not understand simple policy.


6th, Ms Dalbec was behind the elimination of the state autism task force and was helping Norton to silence autism families. State agency folks should stay neutral and not interfere in legislation that dismantles parent power. Dalbec decided to break that trust.


7th, Ms. Dalbec has never held any workshop for Somali or minority autism families.

8th – well you get the point and that is too many problems for MDH to keep someone who clearly is not qualified, lacks empathy and knowledge.

Therefore, we ask that Commissioner of MDH hires someone for autism that cares and is always in the corner of autism families regardless of their color, race, ethnicity, religion, etc.  Ms. Dalbec is not the right person and this is not a job for a cold hearted person.


Thanks!


Above words do not represent any committee, agency or candidate


Idil – Somali Autism Mom and Minority Advocate


Category: Uncategorized

Comments Off on Sen Eaton Sneaks in SF 2892 To Eliminate Cost Free Parent Empowered Autism Task Force

Ahhhh, I have such a huge headache from so many MN DFL politicians and their autism failed policies towards minority communities.

Sen Eaton who represents District 40 and has the following statistics for minorities over 14,600 Black, 3,500 Asian, 2,300 Hispanic, plus other minorities and total of over 52% minorities has just sneaked SF 2892 as an amendment today into health policy omnibus that eliminates state autism task force. Imagine that and even though Eaton did not have a competitor in 2012 and her next election is 2016 – she is completely beatable by anyone.


Eaton has the largest West Africans in the state including Liberians which if you follow autism international research has a large number of autistic children. Yet, Sen Eaton as usual for many MN DFLer’s has refused to acknowledge their pain and frustrations with autism.

The saddest of all is – if you read the health policy omnibus – there are tons of bills that create advisory committees and councils including some where they removed any sunset dates. In other words, MN DFLer’s in the house and senate created more committees, councils, eliminated expiration dates – yet have managed to DISMANTLE the autism one – digest that for a minute. Their reason – well we argue about autism. Are you kidding me. Who the heck does not argue about autism including at the Federal autism advisory committee. The difference is in other autism autism committees – members disagree on issues and policy, yet are able to share a cab or lunch. In Minnesota, if you are a minority person and God forbid you disagree with a MN DFLer – you are rude, dysfunctional, quit or be eliminated. Why is that – I wonder. What makes when “they” talk about policy – a debate and when we do it, an argument? Why the hypocrisy and inferior expectations of Black folks here. Interesting – ain’t it. I remember back in 2010 health conference committee when now Speaker Thissen told now Lt Governor and back then Sen Solon to come down of her high horse and walk on the ground. Yet, after that heated argument – no one in that committee called them dysfunctional and asked that committee to be eliminated. So, again why when I, as an African American autism mom disagree with MN DFL autism policies – it is rude and dysfunctional


Interesting in George Wallace segregation kind of way.

Minnesota has the largest Somali Americans in the country, Autism is the highest in their children and the party they mostly vote for just eliminated the only state autism committee while they increased all of the other committees. Think about that for a minute and your wasted vote.

As one Somali American autism mom said to me today – “the only power we have is our ability to vote them out”. Another Somali autism parent said, “they might have won this battle, but we will win the autism war because it is our children, our future and our life”.

I feel defeated today, but I know I have to get up tomorrow – roll up my sleeve and keep fighting for my son with autism and the thousands of other children like him in Minnesota.

So, what can we do now as a community that is being affected by this devastating disorder?

Well – as they say, it ain’t over until the fat lady sings. And, we will fight til the end which is when Gov Dayton signs all of the bills that come out of conference committees. This means bills still have to go through the floors and other committees.

I and other Somali parents will be on Somali TV and Radio to tell our story and educate our community about our options and to watch those
that vote against us on floor votes and conference committees. We also need to watch what Gov Dayton who is up for re-election and won with less than 9000 votes in 2010 does. He has the power to tell house and senate leadership what he wants and what he does not want. And, since they are all in the same party – they usually listen. So far, Governor’s office is playing dumb even though they hired a Somali toddler to help us whom I am sure they will flash at Karmel
mall in Nov. Ain’t that always the case.

Stay tuned for more drama in MN DFL controlled house, senate and governor for NOW. God willing that will change in Nov 2014 because it is very hard up there for Somali autism community which means 1 in every 32 Somali families – that is a lot of us.

Here is an article on today’s MN DAILY about our pain with autism and the MN DFLer’s treatment towards us. This story by the way has been picked up by Hiiraan Online which is the largest Somali online news, Wacal Media Network, among others. We are always very grateful to our friends in both Somali and American media – you tell our heartbreaking story so eloquently.

Here is where Sen Eaton quietly sneaked her bias elimination of autism parent voices, Sad yet true.

Thanks!

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on April 2, 2014 – World Autism Awareness Day Events @ United Nations

Below are the events happening @ the United Nations for World Autism Awareness Day. If you can attend, I would encourage it. I had the pleasure and the privilege of being invited to speak there last year’s autism event, and it was such an exciting and surreal experience for me. Who would’ve ever thought a rookie autism advocate like me will speak about autism at United Nations world stage, I certainly did not. 



I am very excited this year for Melissa Diamond from Minnesota that my good friend Jacqueline Aidenbaum who along with her husband created UN Autism resolution has invited Melissa to speak. More information will be posted at the United Nations Website for those that can not attend.




Events in 2014 – WAAD (World Autism Awareness Day)


Inclusion in Practice



  • Zulfikar Alimuddin, Founder, The Autism Center, Jakarta, Indonesia

  • Shirley Cohen, Professor Emeritus, CUNY/Hunter College, Author and Co-developer of the ASD-Nest program hosted by the New York University

  • Melissa Diamond, Founder and Director, A Global Voice for Autism – The Jenin Autism Project

  • Aaron Lanou, Director of Professional Development, the ASD Nest Support Project, NYU-Steinhardt

  • John Miller, Self-Advocate andAsperger’s and Autism Facilitator, Boca Raton Middle School

  • Students from the IS.75 Paulo Intermediate School, Staten Island



 



For info and event updates:
http://www.un.org/en/events/autismday/

Category: Uncategorized

Comments Off on A Community Divided is a Community Defeated – We Reject Rep. Kahn and Her Divisive Politics

OK, by now – we all heard Rep Kahn is fighting with tooth and nail to sustain her seat at MN Capitol  representing Cedar/Riverside area, otherwise called District 60B.

There is a lot rumors going on around Cedar area whereby Rep Kahn is playing the politics of divide and conquer. Divide our community by promising this grant, that contract and her seat when she retires. You see if you are familiar with American politics then you know it is not by inheritance or giving your elected seat to your friends.

Rep Kahn has been telling some Somalis in Cedar bunch of false information and filling their head with hopeless hopes and unreachable dreams. First of all, Rep Kahn can not transfer her seat to anyone including her family. Whoever wants to represent will have to run in a democratic way and win by votes of the constituents. Therefore, no matter how many times Kahn says you can have my seat when I retire is wrong, false and full of hopeless dream. Rep Kahn, We Reject Your Late and Hopeless Proposal – It is 40 Years Too Late.

2ndly, No one should  believe Rep Kahn will grant them some kind of a contract with either the state or with the city of Minneapolis. Think about this for a minute – if Kahn really cared about this district’s well being – they would not be at the bottom of every pit in every area, from education gap to health disparity to high unemployment to low homeownership. See those stats of Minnesota’s embarrassingly racial disparities created or at least maintained by current politicians. Furthermore, what has Kahn done to assure the new multimillion dollar Vikings Stadium includes Somali businesses and Somalis for the new construction.

3rd, If Kahn really cared – why not write legislations to offer funding and resource opportunities, oh I don’t know – maybe couple of decades ago. Rep Kahn currently serves as Chair of the Legacy Committee. In addition, she is a member of the Ways and Means which is a very powerful committee that most important bills must go through. Government Operations, State Government Finance (She could have advocated here for this community) She is also a member of the Legislative Commission on Pensions and Retirement. Honestly, how are Somalis doing in their retirement and pension plans. Her legislative interests include issues dealing with information policy, natural resources and women’s rights. I am sorry, but women’s rights and information – come on now. How are Somali women doing in getting information about their rights and being empowered. This would be all too funny, if it was not all sadly true.

You see – Rep Kah does not give a horse’s you know what about the women in district 60B, their pensions, retirement plans or their prosperity because if she did – you would not see everyday a Somali or an East African woman in Brian Coyle struggling with her children, with lack of affordable housing, with work and everything else. Really – you would not.

In terms our children’s health which Autism is a big part – as Somali Autism mom and advocate – I can not name one thing Kahn has done to help us with. Rep Kahn has dismissed, disregarded and refused to listen to our voices and our pain with autism. In fact, when she was asked why she voted to eliminate MN Autism Task force which has done so much good for Somali autism families – her response was “well everyone else voted for the elimination”. I can’t think of a more out of touch excuse. It is like your child saying “well – I did it because everyone else was doing it”. What the heck does that even mean. You don’t jump off a bridge because everyone else is jumping from it. Rep Kahn should’ve asked why eliminate a free, all volunteer, parent based and advocate empowered statewide autism task committee that is responsible for several Somali, Latino, Caucasian and Hmong autism studies.

In sum, if Rep Kahn promised you a seat, a grant or a contract – she simply can’t and will not deliver that. They say history is a good indicator of one’s future actions. Well, Rep Kahn’s history is full of despair, disparity and dismissal for district 60B.

It is time for Somali community in Cedar/Riverside area which by the way is the only district we can have any future of sitting at the political table to UNITE behind Mohamud Noor. Noor cares, Noor will listen, Noor will validate, Noor will bring resources and opportunities to everyone fairly and equally. Noor is the right person, it is his moment and we should ALL stand behind him with no hesitation and no reservation.

High unemployment for minorities statistics:

From the cradle to the prison pipeline:

Home-ownership gap for minorities:

Health disparity for minorities statistics:

Worst Education Gap for minority children:

Vikings Stadium and Minorities in the Pie:

Racism, Bias and Prejudice Policies are the cause of Racial Disparity: Think about this, who writes or maintains these bad policies – Kahn, Norton, Cohen, Huntley, there are more, but you get the idea. We can not wait another forty years to wake the heck up. We need to do it now and unite behind Mohamud Noor. He is the right person and this is the right time. 

Thanks!

Above words do not reflect any agency, committee or candidate

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Separating Facts from False Myths Regarding Minnesota Autism Task Force

Unfortunately, Rep Norton who seems to have so much time on her hands this session decided that eliminating the only statewide autism free and all volunteer committee was the right thing to do. As a result, Norton has spread lots of incorrect information in order to sell this HF 2282 in committees. So, here are facts and false information.

Fact – Minnesota Autism Task Force Does not have a Final statewide plan yet. It only has a draft that is not even yet well discussed and no sub groups to finalize per recommendations yet formed.

Fact – Minnesota ASD TF has met monthly for years even though meeting that many times is not in its charge.

Fact – MN ASD TF has done a lot of good including many research and policies, such as a new study just released last week done by school of public health in collaboration with MN health dept, Confederation Somali Community of MN, Latino and Hmong communities highlighting the barriers for those families in accessing and understanding autism. MDH should post this study soon in their autism website.

Fact – MN State legislature passed a first in its kind Autism Medicaid therapy coverage for children from birth to eighteen years old that will cover behavioral and developmental services. This happened because of the work and recommendations from MN ASD TF.

Fact – state of MN received half million dollars in funding and resources from Federal agencies to study autism prevalence in Somali, Caucasian, Hispanic, Hmong, Native American and Black – Non Somali children in Minneapolis. This was possible because of the work of members from the MN ASD TF. See that study here.

Fact – MN ASD TF is cost free to the state, all volunteer based, has parents, advocates, doctors, funders, state agency reps and state legislatures all working hard to support the over 17, 000 Minnesota autism children and their families. See charge here. And, membership here.

Fact, MN ASD TF is suppose to sunset and end in June 2015 on its own per its charge which would give enough time to finish its work by not just sending a not ready draft, but a ready statewide plan that all stakeholders are in the process in creating and implementing.


Fact, Sadly, all of the MN DFLer’s (the ever-welcoming, sooo progressive, sooo moving forward, loves committees, increased their own house committees in 2012) that were present voted to take away parent voice, advocate ideas and eliminate MN Autism Task force. 


Fact, All of the MN GOP’s present (ever inclusive, reasonable, helped Somali autism, did the first Somali autism study and the last one, created MDH autism website, started DHS autism benefit & wrote this task force) voted to keep parent voices at the table. Think about that for a minute, especially if you are a minority specifically Somali how you voted and how you will vote this year. Insanity is voting for the same people and expecting different policies or ideas.


Fact, Rep Ward – DFL who represents district 53A offered to change this autism task force to again free advisory autism committee and the hard core Putin like Norton and Liebling refused that offer, Imagine that.


Now, despite all of good and amazing work done by a group of folks that come from very different background, communities and regions of the state, Rep Norton has started false and nasty rumors to support her HF 2282 and dismantle, disband, dismiss, disregard and disrespect the hard work of so many in the autism community.


Additional facts – it turns out that Minnesota department of health is helping Rep Norton to eliminate the free MN Autism Task Force, go figure. Apparently, MDH representative sent the call in number for the last meeting at 7:56am. The meeting was suppose to start at 7:45am, then man
y had trouble with the call in number and did not call until towards the end at 8:30am. Yet, MDH apparently wrote meeting minutes stating there was a quorum at the beginning of the meeting. How exactly is that humanly possible? It is not. Not to mention this draft was written by Rep Norton and Mr. Trahan who is not even a member anymore and no discussion by more than half of the members. Yet, somehow Norton and MDH are trying to convince us that they had a quorum, it was open to the public via following open meeting laws, was written and discussed by majority of the members who then voted on it. Ain’t that all just convenience? 


I always thought African government wrote and dictated policies. Well – I guess Rep Norton and MDH do it here in the land of free democracy. Sad and cruel by the state health agency to be in bed in bad policy with Rep Norton and Sen. Eaton who just introduced the sister bill in the senate today SF 2892. Why are Norton and Eaton always against autism families, especially low income and minority communities?

False rumor – MN ASD TF does not meet or function smoothly. I am sorry, but I like to see a group of folks talking about autism that gets along with anything autism. If you google any autism committee, blog or advocacy agency, there are so many disagreements in cause, cure, services, ABA vs RDI, Floortime, alternative medicine, biomedical therapies, vaccines, vs genetic to you name it. Autism is extremely emotional, complex, confusing and there are hardly any agreements on anything. Think about this, you have a perfectly healthy child and something goes wrong around two years. You take your child to the doctor and the doctor tells you – he/she has autism which has no cause, no cure, and lasts a lifetime, have a nice day. Tell me what parent is going to be happy about that. So, yes autism mothers have the same level of stress level similar to a soldier in a combat. See that here.

False rumor – MN ASD TF does not meet. Wrong, because they have met more than it was even recommended by its charge.

False rumor – they have not accomplished anything. Just see how much MN and autism has been brought to light all the way to the White House, to NIH, to CDC & to the United Nations. The only place we have not taken autism is the moon. This by far is the most hurtful false rumor by Rep Norton.

False rumor – MN ASD TF has finished its work. This by far the worst lie since everything including all meetings and meeting minutes are public in following open meeting laws – as you can see there is incorrect and false rumor being told by Norton to state legislators.

You see – many other states are starting and passing State autism commissions that are permanent and funded with staff and resources. Here in Minnesota – the land of 10,000 lakes and 10,000 racial disparities – Norton and her associates are eliminating the only free one that exist. Instead, they could create an autism plate, an autism commission, an autism wandering prevention given the high rate of autistic kids wandering as research states, an autism family coordination center housed in DHS, update and modify autism waivers and allow physical activities to be part of waiver funding since obesity is prevalent in autistic children. etc and etc. They can even allocate resources to start a statewide surveillance system which we don’t have. I mean rather than do good in moving us forward the MN DFL controlled house wants to abandon the little we have accomplished. Imagine the frustration of that thinking and the disconnect of that.

As they say – if there is a will, there is a way. I along with so many Somali autism families are determined to defeat Norton at the polls and even if we don’t succeed this fall, we will try until we do. They say to get good fruits, it is best to plant great seeds. We need to plant and elect legislators that will write good policies and Norton ain’t one of them.

Help us defeat Rep Norton this year or until her bad seed autism policies are out of MN House. Let me repeat again, insanity is voting for the same party or folks and somehow expecting different results. It ain’t going to happen, we must vote smart and wise based on their votes, their policies and their inclusiveness – not their useless campaign words, but with what they do when they get to the state Capitol.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate (determined to fight for autism families from every valley, river and mountain)

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Comments Off on Rep Norton wants to play with more fire in Autism and now wants to change Medicaid Autism Therapy Law Passed 2013 by Introducing HF 2700 (why is she obsessed with Autism and Low income families)

Have you ever wondered what motivates Rep Norton who always seems to introduce legislations that throw low income autism families and minorities under the bus.

I mean ever since spring of 2010 – we have been fighting her bias and prejudice policies, and even though she keeps losing in her discrimination laws – she keeps coming back with more.

Now, she has done it again. HF 2700 just introduced this session is the work of the red Tshirt wearing upper/middle income of mostly Caucasian autism families and their hot shot K street like lobbyist. If you remember, this group without even a blink thought they could take over $25 million from the health and human services budget last session. They wanted the state to supplement their private insurance and pay for unlimited age and hours of ABA (applied behavior analysis) autism therapy.

Since that did not work because when you take millions from health and human services budget – the poor, disabled and everyone else suffers. All for what to add to already buttered folks. Well – sadly, they are back again with a new bill number HF 2700, but the same unequal language.

In addition, HF 2700 wants to alter and change the really good, fair and equal Autism law that passed last year for children with Medical Assistance (MA) which has objective and reasonable language.


Norton and Company now want to even mess with that. I kid you not.

On a side interesting note, apparently – this group which as I said has zero provider of color and refused to include minority low income voices testified for Norton to kill MN Autism Task Force, even though many of them were trying to get in into the Autism task force in 2011, including their leader and owner of Lovaas – Dr Larsson.

I guess as the saying goes – if I can’t be in it, then it must be eliminated and destroyed is true here. Even the previous Autism chair, Mr Trahan now wants to eliminate the MN Autism Task force. If you remember in my previous blogs, Mr. Trahan resigned because he kept refusing to follow open meeting laws and did not want the health dept to share Federal grant from HRSA (Health Resources & Services Administration) with Minority based agencies. Keep in mind that we in the Somali Autism Community were the only ones that advocated at the Federal level so that funding for HRSA was possible through CARA Law that President Obama signed into law on Sept 30, 2011. Yet, when the money became available, the mostly privileged Caucasian folks wanted to hog the resources. Imagine that level of disconnect and bias.

Further, back in 2009 when Sen Ann Lynch a DFLer from Rochester wanted to not even start the MN Autism Task Force – Mr Trahan was against her. He even went with us to Somali TV of Rochester and advocated in our community to vote against Sen Lynch. The irony is now since he is no longer in the committee – he wants it to end. I know if you are getting a headache from reading this, imagine how I and others in the minority autism community feel.

Anyway, with Mr. Trahan’s help – we did campaign against Sen Lynch who lost in 2010. Maybe we can have the same luck in 2014 and Rep Norton will LOSE the 2014 election. From this blog to God’s ears. Another related note, I saw Amira, a Somali woman in Health Policy Committee in MN House last week, learning about health policy. I almost partied like it was 1999. The more folks that reflect us – the better policies will come from policy makers who seem to get amnesia after they win.


Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Upcoming IACC Meeting in April – Autism Awereness Month

Below is the upcoming Federal Interagency Autism Coordinating Committee to be held in Bethesda, MD – NIH Campus. This committee sunsets this year, but advocates and families are working with many members in Congress to reauthorize Combating Autism Act. 

On a side note, can you imagine if state legislator and queen of autism disparity was a member in Congress. Norton would probably be working towards a way to dismantle & eliminate the Federal autism committee as well. I guess we should count our blessings her damage is limited to Minnesota autism families and not nationally.
Members of the public can send their comments or questions for the committee before the deadline. April is autism awareness month – please be kind and have compassion always, but especially this month towards all autism families and autistic individuals. 
Above words are my own and do not reflect any committee, agency or candidate.
Idil – Somali Autism Mom & Minority Advocate
Below is the meeting information:

IACC Full Committee Meeting

Date: Tuesday, April 8, 2014
Time: 9:00 a.m. to 5:00 p.m. Eastern
Place: National Institutes of Health
31 Center Drive
Building 31, C Wing, 6th Floor, Conference Room 10
Bethesda, Maryland 20892
Map and Directions
Cost: The meeting is free and open to the public.
Agenda: To discuss committee business, updates and issues related to ASD research and services activities.
Access: Medical Center Metro Station (Red Line)

On-site parking is available for a fee, but very limited. 

In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus.  All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit.

Registration: On-site registration is from 8:30 a.m. to 9:00 a.m. Pre-registration is recommended to expedite check-in. Seating in the meeting room is limited to room capacity and on a first come, first served basis.

Online pre-registration This link exits the Interagency Autism Coordinating Committee Web site will close at 5:00 p.m. Eastern Time the day before the meeting. After that time, you will need to register onsite the day of the meeting.

Webcast Live: http://videocast.nih.gov
Conference Call Access: Dial: 888-950-8042
Access code: 8689681
Deadlines: Notification of intent to present oral comments: Tuesday, April 1, 2014 by 5:00 p.m. Eastern

Submission of written/electronic statement for oral comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern

Submission of written comments: Wednesday, April 2, 2014 by 5:00 p.m. Eastern

Please note:  The NIMH Office of Autism Research Coordination (OARC) anticipates that written public comments received by 5:00 p.m. Eastern, Wednesday, April 2, 2014 will be presented to the Committee prior to the April 8th meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. Eastern, April 2, 2014 deadline through April 7, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. Please read the IACC Public Comment guidelines.

Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC, Room 6182A
Rockville, Maryland 20852
Phone: (301) 443-6040
E-mail: [email protected]
Public Comment: Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Tuesday, April 1, 2014, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Wednesday, April 2, 2014. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.

In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern on Wednesday 8, 2014. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. NIMH anticipates written public comments received by 5:00 p.m. Eastern, Wednesday, January 8, 2014 will be presented to the Committee prior to the meeting for the Committee’s consideration. Any written comments received after the 5:00 p.m. Eastern, January 8, 2014 deadline through January 13, 2014 will be provided to the Committee either before or after the meeting, depending on the volume of comments received and the time required to process them in accordance with privacy regulations and other applicable Federal policies. All written public comments and oral public comment statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.

Core Values:
In the 2009 IACC Strategic Plan, the IACC listed the “Spirit of Collaboration” as one of its core values, stating that, “We will treat others with respect, listen to diverse views with open minds, discuss submitted public comments, and foster discussions where participants can comfortably offer opposing opinions.”  In keeping with this core value, the IACC and the NIMH Office of Autism Research Coordination (OARC) ask that members of the public who provide public comments or participate in meetings of the IACC also seek to treat others with respect and consideration in their communications and actions, even when discussing issues of genuine concern or disagreement.
Pleas Note: Remote Access:
The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to [email protected] or by phone at 41
5-652-8023.

Special Accommodations:
Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 5 days prior to the meeting. 

Security:
In the interest of security, NIH has instituted stringent procedures for entrance onto the NIH campus. All visitor vehicles, including taxicabs, hotel, and airport shuttles will be inspected before being allowed on campus. Visitors will be asked to show one form of identification (for example, a government-issued photo ID, driver’s license, or passport) and to state the purpose of their visit. Also as a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

Category: Uncategorized