Alright, so we all know by now Sec Sebelius resigned from her post from U.S Health & Human Services. But before she left – Sebelius appointed two public members to IACC (Interagency Autism Coordinating Committee).

Dr. Ring was appointed and will be representing Autism Speaks. Dr. Dawson whom I just love represented Autism Speaks, but took another job at Duke University in North Carolina. Personally, I don’t know Dr. Ring well – but I have always liked Autism Speaks research department. Dr. Chung from Simons Foundation was also appointed by Sebelius. Dr. Chung replaced previous member from Simons Foundations who left IACC. Simons does a lot of autism research – usually related to genetics and autism. The cool and different thing that I noticed as someone from Minnesota is how when someone resigns from an autism committee  – the appointing authority replaces them, instead of eliminating the whole autism committee or telling us autism’s work is done. Have you ever heard of such foolish thinking? Well – of course you have because that was the excuse given by Rep Norton and Rep Liebling when they tried to eliminate MN autism task committee because God forbid …. wait for it…. some members left.

Anyway, I am sure Dr. Ring and Dr. Chung will be an amazing addition to IACC and to the autism community. Below is the announcement from HHS website.

HHS Announces Appointment of New Public Members to the Interagency Autism Coordinating Committee

The Department of Health and Human Services today announced the appointments of Wendy Chung, M.D., Ph.D., and Robert Ring, Ph.D., as public members of the Interagency Autism Coordinating Committee (IACC), a federal advisory Committee composed of federal agency officials and appointed community stakeholders that provides coordination and a forum for public input on issues related to autism spectrum disorder (ASD). Prior to her departure, former HHS Secretary Kathleen Sebelius appointed Dr. Chung, Director of Clinical Research for the Simons Foundation Autism Research Initiative (SFARI), and Dr. Ring, Chief Science Officer of Autism Speaks, to join the IACC in order to provide additional perspectives and expertise to the Committee. Dr. Chung and Dr. Ring serve as leaders within the two organizations that are the largest private funders of autism research in the United States. Both organizations were previously represented on the Committee by individuals who were appointed in 2012, but who have since left or changed affiliation.

Dr. Insel, Chair of the IACC and Director of the National Institute of Mental Health, welcomed the expertise and dedication that Dr. Chung and Dr. Ring bring to the IACC. “Both Dr. Ring and Dr. Chung will be important additions to the Committee, given the depth of their scientific and clinical experience, and their dedication to improving the lives of people on the autism spectrum,” he said.

Dr. Chung, in addition to directing clinical research at SFARI, served as a member of SFARI’s scientific advisory board. Dr. Chung is also the Herbert Irving Associate Professor of Pediatrics and Medicine and the Director of Clinical Genetics at Columbia University College of Physicians and Surgeons, where she is the principal investigator for the Simons Variation in Individuals Project (Simons VIP), funded by the Simons Foundation.

Dr. Ring, who has been the Chief Science Officer of Autism Speaks since 2013, also serves as the Chairman of the Board of Delivering Scientific Innovation for Autism (DELSIA), the venture philanthropy arm of Autism Speaks, and leads Autism Speaks’ collaboration with the Simons Foundation to launch the Autism BrainNet, a privately-funded multisite brain banking effort, focused on supporting autism research. Dr. Ring previously served as Autism Speaks’ Vice President of Translational Research. He holds adjunct faculty appointments in the Departments of Psychiatry at Mount Sinai School of Medicine and Pharmacology and Physiology at Drexel University College of Medicine. Prior to his work at Autism Speaks, Dr. Ring served as Senior Director and Head of the Autism Research Unit at Pfizer Worldwide Research and Development and worked in the area of psychiatric drug discovery at Wyeth Research.

These two new members of the Committee will serve for the remaining months of IACC activity under the Combating Autism Reauthorization Act of 2011, which will expire on September 30, 2014. If reauthorized, the IACC will be open for nominations of new potential public members in late 2014.

***

The IACC is a federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC provides advice to the U.S. Department of Health and Human Services on activities related to ASD, and works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different federal agencies involved in autism research and services, as well as people with ASD, parents, advocates, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.

Alright, so Speaker of Minnesota House of Representatives – Rep Paul Thissen is a lot of things, but stupid is not one of them. Thissen who represents Minneapolis district 61-B has smartly figured out how to feed us empty words and promises while he never actually addresses our issues.

For example, back in 2010 at the heels of Minnesota department of health’s Somali autism study which stated Somali born preschool kids in Minneapolis school district having an administrative rate of autism up to seven times higher than the general population – Thissen still voted for HF 359 which wanted to leave therapy and support for low income & minority autism families. From what I can remember, Thissen was mad at me during the 2010 conference committee negotiations because we were able to convince then Sen Berglin to take HF 359 out of the health and human services omnibus bill since it was unfair and unequal. Thissen was in that conference committee, then he got more mad when we got media attention to their inequality because a bias MN DFLer always wants to keep their disparity policies under the table.

Thissen always comes to African American functions at the state capitol preaching how he is for diversity and reducing racial disparities, but if you look at his voting record that is simply empty words. Thissen is very good at making worthless promises and we unfortunately drink his words like it is holy water.

I remember him coming to Council of Black Minnesotans day at the state capitol and preaching the minimum wage speech. Of course, I had my little usual poster protesting in front of him for his failed autism policies which pissed him off and anytime I can piss off some arrogant politician is a good day for me. Now, in terms of raising the minimum wage – the words sound good because everyone should make a living wage but the problem is, it does not address Minnesota’s persistent economic and employment racial gap. In other words, a rising tide does not lift all boats. A minority person must first be inside the boat for the tide to lift them. And, based on research after research and stats after stats – Minnesota while non-minorities are doing well – its minority citizens not so much.

Therefore, Thissen needed to pass specific legislations to address this, but he just gives us useless speeches and calls it a day. For example, this year the state legislature passed a really good uplifting women’s bill HF-2536/SF-2050. If you look at what his legislation will do for Minnesota women is fantastic. It will level the economic playing field and encourage women to enter high paying employment fields, assure equal pay for equal work, etc. As a woman and as a mom – I supported this bill.

By the same token, there was nothing similar uplifting minority legislation especially African Americans in Minnesota who seem to have the worst statistic in every category from health to education to employment to home-ownership. Imagine if Thissen actually practiced his words and pushed similar legislation of Minority economic & employment act where minorities would have similar resources to learn, improve and prosper in their lives. Imagine that and because it did not happen and will never happen because we in the Black community never bargain with our votes. We vote for people like Thissen then wonder why our communities are not doing well. I think it is because people like Thissen take our votes for granted. They know that irrespective of their policies – they will always have the Black vote. On the other hand, women bargain with their votes by saying in the words of Janet Jackson’s song – what have you done for me lately?

To make matters worse, extremely bias reporters like Mpls Tribune’s Rachel S only tell us how good politicians like Thissen or Bakk for that matter are and we believe it with no policy to back it up. Remember When Stassen wrote this story and started with “Leaning his lanky frame over his office table, the tip of his tongue resting lightly on his upper lip”. I am sorry, but if I want to know where a man’s tongue is resting – I rather read fifty shades of grey. I mean seriously – was this suppose to be a romance novel or a political story. Who gives a rat’s you know what where Thissen’s tongue rests – really. Not the average Minnesotan.

Now, as you know media shapes messages and once you shaped policy messages then you have influenced policies and voter’s minds. Don’t lose hope though because Minneapolis Star Tribune has just been bought by Glen Taylor – a Republican. Yay! This means political stories will no longer be romance stories, rather they will be based on facts and political policies. On a somewhat related story, I remember when Abdi Warsame was a candidate and as you know by now I think Warsame’s story is compelling – to recently come to the U.S yet have so much inside clout in American politics. At any rate, I remember contacting the Tribune and MPR asking their editors to cover Warsame’s story in a depth manner. I remember the MPR President told me their usual script of we have good reporters and they do a good job, blah blah. I think I gave him an example of a reporter being born and raised in Alaska writing about the weather in Miami. Unless you walked on Miami beaches, sat on the sand and felt Miami’s Ocean breeze – you can’t really do justice in your story. Therefore, MPR and Mpls Star Tribune need to hire reporters of color so that our stories can be told from our lenses which then will shape policies affecting our communities.

Alright, so – today was the celebration of the independence of Somalia (Soomaaliya). To give a brief history of Somalia – we were divided into five sections during the colonization of Africa, hence the blue flag with the five stars. South Somalia became independent from Italy on July 1st 1960, North Somalia from England on June 26th 1960, DJibouti got its independence from France in 1977, but decided to not merge with South & North Somalia.

As a result and as its custom & tradition, Somalis in Mpls celebrate Somali independence day usually between the two dates – but since Ramadan is coming – the Confederation Somali Community of Minnesota decided to hold it this year today, June 21, 2014. CSCM also decided to give the preparation of the event to a new youth Somali organization named Ka Joog. Now, Ka Joog does a fairly good job in addressing youth issues and ensuring our young kids stay on the right path to life.

Staying on the right path also involves learning our culture, our dhaqan, is ixtiraanka, in la xushmeeyo dadka kaa wayn iyo in howlaha Soomaaliyeed mar walba laga hormariyo arrimaha kale. Today Ka Joog failed this miserably. They decided that autism was not an important topic to be discussed on Somali day. Their reason – autism was not on the schedule even though Noor invited me to come and talk about autism. How can I put this diplomatically, let me see – I looked at my schedule and what do you know – my son having autism was not on my “schedule”. We all make lemonade in whatever life ball or curve we are thrown at. Autism was not any parent’s “schedule”, but we are dealing with it and the ignorance of this group to ignore such a devastating medical disorder in our community is both sad and unfortunate. My guess is at the rate this medical condition is hitting us, they too will have a child with autism who would not be on their “schedule”. My advice to Ka Joog is ka jooga kibirka, dhaqan xummada iyo isla waynaanta. Aduunka waa la’idinka soo horeeyay – ixtiraama your elders. You might learn something!

Noor – loses my vote of confidence:

Mohamud Noor who is challenging Rep Kahn for District 60B is also the director of Confederation Somali Community of Minnesota (CSCM). He hired Ka Joog (village idiots-not a typo) on behalf of Somali community of Minnesota to organize the Somali independence day of 2014. Yet, he could not be decisive today and tell these clueless young Somalis that 1 in every 32 Somali children in Minnesota has autism. Autism is hitting harder in our children and it is critically important to talk about Autism on Somali day.

You see Mr. Noor – Minnesota State Capitol will have bigger and sharper sharks and one must be decisive and always choose the needs of his/her constituents. You have failed this today. You should have told Ka Joog in ay ka joogaan dismissing autism which Somalis have the highest in Minnesota. In other words, if you can’t make the right decision in something so simple and so necessary with Ka Joog – how will you make real decisions at the MN State Capitol. I am sorry, but we need an elected official with a backbone and a spine who will make hard decisions even if they are not popular or nice. Now, you can say a lot of things about Rep Kahn – but she does not lack a backbone. In fact, before she was a state representative – she stood up for women’s rights at UMN. Don’t get me wrong – Rep Kahn has voted against everything autism and I can’t support her, but at least I know where she stands. With you – it is hard because you want to be BFF with everyone even with useless Ka Joog kids who clearly aan ka joogin dhaqan xumada, fahansanayna in Somali day ay ku saabsan tahay Somalis.

Furthermore, Sen Cohen is still a board member of CSCM while Cismaan Sheikh was kicked out. How can that possibly be. First, whatever Mr Cismaan does in his private time is his business and while I don’t agree with his decision to support Rep Kahn – that is his prerogative. By the same token, Sen Cohen is the chair of the full Finance committee in Minnesota Senate – yet CSCM is broke and on thin ice. Every legislation with a funding attached to it in the state goes through Sen Cohen’s committee. In other words, if he is not helping Somali community – why is he on the board. Why not kick him out if Cismaan Sheikh can be kicked out. Isn’t that double standard.

Therefore, as a Somali mom and advocate, I have lost any confidence I had in your ability to fight for our cause when it might not be popular or nice.

Here is the state supplemental bill – notice how there is nothing for CSCM. Yet, Sen Cohen who is in charge of the state finance committee is still on our board. Are you folks kidding me? Oh, and Sen Cohen voted against the amendment by Sen Benson to save the MN Autism task force, how nice. Here is my post on saving the MN Autism task force despite Sen Cohen voting against us on the Senate floor – we prevailed in conference committee.

Also, notice autism appropriations from line 156 which included MN state autism website, training autism providers in Somali culture as well as other minority cultures and autism respite grants for families that are tired and overwhelmed in which we were able to advocate without the usual support we would get from previous Somali community director Dr. Fahia whom you have replaced.

Mr. Noor – if you want to lead our community then you must lead from the front and make tough decisions without blinking or being afraid you might offend some village idiot.

A recent poll stated Dayton and Franken have a slight and hopefully a shrinking lead. This means they are completely counting on the minority vote while ignoring their issues and concerns. Think about it. 

Alright, so it is election year again and you know how – that is when MN DFLers pretend to care and learn few Somali words and show up in our restaurants, businesses and communities. And, we are suppose to have amnesia and forget about their policies of health disparity,  Commissioner of Minnesota department of health, Dr. Ehlinger stated structural racism is partly to blame for this persistent and chronic health disparity, yet MDH does meaningless annual needs assessment including for children with special health care needs, such as autism and nothing ever changes. Why is that? Quite frankly, if one more person from MDH tells me they are doing a useless needs assessment – I am going to scream. MDH does not change policy, leadership or outreach so how exactly is disparity going to decrease. Let me guess by magic or better yet one more MN DFLer coming to our community and preaching how they are going to change it this time. Negro please. Commissioner Ehlinger you said “State Health Commissioner Dr. Edward Ehlinger says part of the blame can be laid at the feet of “structural racism,” which, he said, all Minnesotans must confront in order to bridge the gap, “Everybody is damaged by health disparities”. If you mean those words then start holding child and maternal leadership accountable for their failures and please fire them. Come on – you can’t preach equality while CMH practices inequality. For autism – they have done nothing significant. 

Education wide gap, embarrassing city/state minority contracts, highest employment gap between Whites and Blacks. By the way, take a read of how many minority leadership persons are with MN DEED – you know the agency in charge of employment. In sum, Minnesota has some of the worst gaps between Whites and Blacks, especially in Minneapolis. And, most of those areas doing bad are run by MN DFLers. Therefore, they take our votes for granted and it is time to kick them out of office and vote them out. 

In addition, during elections is when Take Action Minnesota pretends to be inclusive (George Wallace was more inclusive then them – really) and partners with MN DFLers telling us – MN GOP want to ask minority voters ID. Yet, when MN DFLers ask Somalis to cough up voter ID’s during Kahn/Noor Caucus – well that was needed to proof residence. Really, the audacity and the level of hypocrisy would be too funny, if it wasn’t all true.

Now, we can be stupid and vote for Dayton and Franken again by buying more empty words, useless promises that will never become fruits or we can make a different choice this year. Fool me one election cycle – shame on you. Fool us every election cycle – shame on us.  Dayton and Franken CAN NOT win without Minnesota minority votes – period. MN DFL chair who can sell water to a drowning minority person knows that very well.

During Dayton’s last four years of governing Minnesota – he has done very little to uplift minority disparities – in fact it has gotten worse under his administration. He eliminated any chance of improving the horrible education gap between white and black students.  In 2012, a bill to repeal the seniority-only provision was passed by the House and the Senate. It was known as the “LIFO” bill, which stood for “last in, first out” — also known as last hired, first fired. The bill, which had support from education-reform advocates statewide, was vetoed by Gov. Mark Dayton. See that post here:  By the same token, Jeff Johnson said this about MN education gap and he can fix it by putting students first not over-rated teachers who suspend black students and underachieve our kids. 

Dayton’s running mate, Tina Smith is the previous chief of staff for Mpls Mayor RT in which she left the city having some of the worst racial disparities in the country and now we want her to make all of Minnesota to have similar racial disparity. In city hall – Smith was called velvet hammer, in state capitol – I call her heartless hammer who rules with an iron fist. Why would we want that for number two person to Dayton. Ask yourself, especially if you are Black or Brown. 

By the same token – Jeff Johnson will not delegate your issues to any heartless hammer, he will tell you what he will and will not do himself. Jeff will level the playing field and assure opportunities are equal. He is compassionate, caring, considerate and conservative. What more could we ask, he believes we are in this together.

During Dayton’s state of the state speech, we were told to praise the MN DFLer’s legislative achievements. I am sorry, but MN DFLers did not even approve one single legislation from the Council of Black Minnesotans. See for yourself which of those so called achievements have benefited Black Minnesotans. In fact, out of the 12 legislations recommended by Council of Black Minnesotans
last session – guess how many actually passed committees, floors and signed by Gov Dayton? Zero, zilch, zippity and nothing. But we want to vote for him again. Come on folks – you can’t be serious.

In other words, not only was there almost zero for the broke African American museum or the struggling Somali American community center in Brian Coyle, but a recent study stated – city of Mpls minority and women owned businesses contracts have decreased. How lovely. Come on – we can’t vote for the same person and somehow expect different results or policies. It ain’t going to happen. When Dayton was a candidate, he promised Somali autism research that looks into a cause and that has NOT happened at all. Take a read below.

Mark’s Pledge to the Somali Community:

Regarding Sen. Franken – well where shall we start. I am not even sure how his polls can be high at all. Remember how close Sen. Coleman was to our community. He was the first person to write letters and contact NIH, CDC and Gov Pawlenty regarding Somali autism. Franken – oh lord have mercy – talking to Alana is like pulling your teeth without Novocain. It is excruciatingly painful. If you look at Thomas loc.gov and put Franken’s name to see which legislations he authored  that became law or policies – you will see a toddler would have had more success in Congress. After six years of silence and leading from behind – Franken has accomplished one thing. He can take his SNL comedian hat off and sit in committees especially the HELP (health, education, labor and pension) committee quietly. Franken has refused to hire any Somali policy aide even though I alone sent quite few to his office. They always managed to say “you are not qualified even with master’s degrees – yet hire clueless non-minority folks”. He has zero person of color in a higher position advising him on any policy.

Franken has refused and stayed quite to help and support the neglected HBCU (historically black colleges and universities) by the current Dept of Education Secretary Duncan. By the same token, the Koch brothers have donated $25 million to HBCU’s. Imagine that, A mind is a terrible thing to waste – indeed. 

His rivals are many and I support Rep Abeler who will lead from the front, has abundant health care solutions, education issues ideas and is truly a man of the common person from main street – not Hollywood blvd. Abeler is the reason we will have an equal autism therapy benefit. He started that ball with MN DHS by telling them to come up with a plan that covered everyone rich/poor, black/white – all autistic kids under Medicaid when he was the chair of health and human services finance cmte. This is why HSAC was asked to come up with a plan and DHS is now applying this plan of 1915i autism therapy coverage with CMS (Center for Medicaid and Medicare). Abeler will stand for the little guy against any big company or agency. See that here:

In other words, while Franken might have the big bucks, Abeler has the big ideas and a bigger heart filled with solutions, ideas and a humble personality to back it up. So, ask yourself do you want a SNL (Saturday Night Live) comedian where no Somali is good enough to work for to represent us or do you want a proven legislator with a medical background to lead us? Ask yourself and VOTE FRANKEN OUT.

You see, Dayton and Franken have failed Minnesota minorities and if we vote for them again we are saying – we like being at the bottom of every pit. It is time for a better change that is driven by ideas not worthless campaign words. Vote wisely please!

Idil – Somali Autism Mom & Minority Advocate

WE CAN DO IT!!

ABA information:

Speech therapy information (SLP)

Occupational therapy information (OT)

Psychologist or Family Therapist information (we need these folks to diagnose and write the treatment goals. They can also help our community with a whole host of other mental health and family therapy) If you can believe it, I have never ever ever seen a Black autism psychologist, family therapist, SLP or OT therapist. I kid you not. We need to learn how to help ourselves or we will be at the mercy of these heartless and blood sucking (not all of them) autism providers. 

MDE and DHS sites for autism provider information

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

Have you ever heard of the saying – icing on the cake? I have and I usually know there is cake and the icing is a bonus.

I am not going to complain about DHS in this post about their icing on the cake for many areas in autism. In fact, I could not ask for more and I am done in my advocacy with DHS of assuring autism providers are trained in culturally and linguistically appropriate services, parents have a system in place to make their concerns and there is an objective care coordination to assure what is best for the child is going to happen. In other words, no more ASD parent will be bullied or belittled. Believe me when I say, I was bullied and belittled by some ABA providers and some might consider me a bull. Imagine how other autism families felt.

As a result, I have advocated high and low to assure what happened to us never happens to another family. And, I am happy to report all of these things have been adopted by DHS last year and especially this year’s legislative session. So, all is good on icing on the cake. And, I am very grateful to DHS leadership in taking the bull by the horn (if you will).

However, there is a problem because DHS had the audacity and the nerve to say to us there is no cake in applying the 1915i autism waiver benefit. Now what now? let me repeat that as I screamed when I read that sentence – now what now?  Apparently the state Medicaid agency wants to apply 1915i autism waiver for fee for services autism kids. Let’s explain this – fee for service autism families are usually wealthier and mostly Caucasian kids who now get ABA through FFS by calling ABA skills training. Are you following me so far.

By the same token, managed care kids who are disproportionately minorities get denied for the same ABA or skills training by MCO (managed care organizations) such as UCare, Medica, etc. Because of this cruel and illegal double standard – we have advocated, begged and asked almost four years for the state medicaid agency to call skills training ABA because that is what it is and cover it for ALL kids, especially for low income kids because after all Medicaid was designed for low income families.

Personally, I have been told by DHS yes and yes and yes the new benefit will be equal for all. Then comes their 1915i application draft which said this 1915i autism benefit is for fee for service because managed care is under different authority. I am lucky if I didn’t drop dead when I read that, really I am not kidding. What does not kill you makes you stronger. So, calmly, (not really, I was screaming) I asked DHS are you kidding me what the hell is this sentence. Initially they said – calm down that is why we want public input and comments. I wasn’t sure how to respond to that at first because why would they even ask any public person if a bias policy is OK. Does that mean if the public is OK with it then we should continue to discriminate against the low income autism families that Medicaid is for? What the heck? Sorry I meant what the hell kind of response is that.

Then they said – well we plan on asking the MCO’s to adjust & add the same coverage as FFS when their contract is up end of the year. I think I had a mini meltdown when I heard that. Let me put this in layman’s terms. DHS telling me that is like a husband saying to his wife, I am sorry as he beats the crap out of her. Better yet, it is like Mike Tyson saying to Evander Holyfield – let me say something to your ear. Come on – we are not stupid.

Do you know how many DHS people told me they are working on MCO’s to correct their contract and include autism therapy (ABA). Over and over I have been told that and nothing was ever done which is how this 1915i came about from CMS. And, now DHS says trust us we will be fair this time. Fool us once, shame on you – fool us over and over, shame on us.

I for one am NOT buying this. The fact that MCOs are under DHS and DHS has not corrected this problem for years is reason enough to not trust them there will be cake for all of this icing.

Icing is only good if there is cake under it.

In sum, DHS can not and will NOT discriminate against low income autism families by only writing FFS in this 1915i application. How is this for irony, we get discriminated in our own ideas and advocacy. How do you like them apples, and we wonder why there is racial autism disparity.

I am not sure how DHS will fix this, but they have to or the gloves are coming off and we are not asking. We will take the same route that Florida and Washington state did when those states also discriminated against low income autism families.

To DHS – you want our public comments for a bias policy. We can not and will not accept, that is our comment and you need to fix this now before you send to CMS because we will take our fight to them as well. No more bias autism therapy. In paraphrasing the words of George Foreman – we are not going to take it anymore.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate

As we all heard by now, GAO has done a report on Autism and Federal Activities including IACC. And, depending how you read this report – you either really ran with it or you saw it as I did. I saw this report from the lenses of a regular autism mom. We can all improve in autism research and in every area. It said autism research had the potential to be duplicative and some just ran and ran with it without regard to scientific research. Then they went to Congress with it and we all know Congress is good at putting on a show.

First, let’s explain why Rep Issa is all of the sudden interested in autism. Rep Issa has never authored or cared about autism issues until one of the members in his committee who was retiring in 2012 requested an autism hearing. Hence, the fall 2012 autism hearing in Issa’s committee. Then according to autism blogs and chats – Rep Issa took $40,000 from some wealthy autism parents – some of whom are from Minnesota. Then the game changed and autism became Rep issa’s interesting project.

2nd, in order for any research to drive policy or medicine – it must be replicated and duplicated. For example, advocates say ABA must be covered by insurance because it has replicated and duplicated research. Get it – duplicated and replicated scientific research drives policy. Otherwise, policy makers would not approve nor will payers pay. Therefore, autism research must be duplicated and replicated. Thus, autism research should not have the potential to be duplicative, but should be duplicated by multiple agencies and researchers to see if the outcome/results are the same, varied or changed, etc. Sometimes a messy and uncoordinated scientific research finds the answers. I am no scientist nor play one anywhere, but as a policy advocate I depend on replicated and duplicated research to move a policy idea.

3rd, Do we need more environmental research looking into autism cause – Heck yes. But this does not mean we should eliminate what little we have and make Congress make a fool of our autism community. Yes, we are now the fools – we have children who need medical attention and we are too busy picking and working against each-other. What does that say about us who are suppose to be the adults in this. Think about it.

4th, GAO works for Congress and they are the ones that asked them to look into this and picking or belittling Dr. Cross is not the answer. Speaking of waste – imagine if GAO was asked to look into autism and racial disparity and HRSA’s role in it. That would be an interesting report.

5th, Dr. Insel has done more for autism than anyone else and I still can’t figure out how he remains so calm. Insel has said time and time again parents are on fire and need help now. He said we need more environment research, he is part of the newly planning group on co-conditions of autism. I am sorry, but NIMH is not just about autism rather all mental health conditions in the country and Insel talks more about autism than any other mental health disorder. We can’t keep biting the hand that has helped us. I for one stand behind and support Dr. Insel 100%. And, no it is not because I am on the IACC – I was just a regular mom when NIMH and IACC coordinated Somali autism research. So, give me a break and stop saying IACC does not coordinate.

6th, IACC does not do research nor fund it. They recommend and yes the process can improve. IACC can write new objectives that reflect today’s autism needs because some of the 78 objectives that are now there are outdated and must be updated. So, of course – there is room for improvement in better and targeted objectives. There is room for adding more federal agencies that fund or do autism research into IACC coordinating efforts. There is more room to put out more funding opportunities for racial disparity, adults, teens, environmental toxins and how they affect different genes, why certain ethnicities are higher or have more profound autism symptoms, better housing, better and targeted employment for all autism individuals across the spectrum, etc and etc. But to call and ask Congress to kill the only autism legislation we have is irresponsible and wrong. We need to improve not eliminate. Gee I wonder where I heard that before.

7th, I would say to those that are soooo interested in vaccine research and don’t believe what has been done thus far – to put their money where their mouth is and fund it themselves. If you all think what has been done is inadequate then do it yourself – many of you are wealthy and can fund it. So, why not. Instead of eliminating what little autism has. Don’t get me wrong because I totally understand when your child is developing just fine and you do something then his development changes or he loses the skills he had. I get the natural instinct to make the connection. This is why many in our community are choosing to skip vaccines and the best MN state health dept can do is scare parents with measles which is like scaring Joe Fraser with a toddler punch. So, yes we as a nation need better way to outreach to parents whose children regressed and do rigorous research on what other environmental factors are involved. Nevertheless, I still don’t think eliminating what little we have in Federal autism is the answer. We need to be strategically smart.

8th, I am not sure why we are picking on President Obama. He announced $100 million for brain research including autism on world autism day with NIH director. Obama is not a researcher and has put autism on the front burner. Plus ACA took off pre-existing condition, again biting the hand that has helped us is irresponsible.

9th, One of the committee members said yesterday @ the hearing – Aids and Cancer have more funding than autism even though more people are affected with autism because they are united and have better lobbyist. Why can’t our autism community unite and lobby together.

10, Finally, a community divid
ed is a community lost & not funded, and the very children we are trying to help suffer the most. Please think about your actions before you take them – millions can be affected by them. Let’s unite for all ASD kids, adults and families. And, let’s not scare off researchers or policy makers.

The Hill had a story on autism feud:

LBRB blogged about this as well among many others.

Thanks!

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

Idil – Somali Autism Mom & Minority Advocate