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Comments Off on Minneapolis School holds Autism Resource and Information Event

Minneapolis school district held today its annually autism resource and information event in Confederation Somali Community of Minnesota center in Brian Coyle.

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

Category: Uncategorized

What can Rep. Liebling learn from IACC?

Comments Off on What can Rep. Liebling learn from IACC?

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

Category: Uncategorized

Comments Off on Autism Coverage for only Middle/Upper class kids crawls from HHS

SF314 Authored by Senator Eaton of Brooklyn Center which has lots of West African and other minorities is heard today in Health, Human Services & Housing in Minnesota Senate.

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

Category: Uncategorized

Comments Off on Invited to World Autism Awareness Day @ United Nations 4/2/2013

What a remarkable journey – I had with autism. When my son was first diagnosed, I could not even say the word out-loud for six months. I went into denial, shame and stigma for a long time to the point of taking him to Wisconsin for a play ground and avoiding everyone I knew. 

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

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Comments Off on Autism Policy/Politics in Minnesota; The Good, The Bad and The Ugly

Let’s start with the Good. Remember back in April 2011 – there was a front page article on Minneapolis Star Tribune titled (Double Standard). 

Minnesota has been paying for wealthier autism families autism therapy such as ABA, developmental, etc in Medicaid funds through Fee for Service Medicaid, while it Denied low income autism families/minority families by putting them into Managed Care Medicaid health plans. There was a catch, Minnesota department of human services (DHS) called the therapy “skills training”. I know what the heck is skills training, it is not a method of therapy. It is simply the ability to train someone to do a skill. 

As a result, before the article and since, we (minority/low income parents) have been fighting with laser like focus because to be discriminated in Medicaid when you are low income is just silly. 
By the way, isn’t Medicaid for the poor?
To make a long journey short; DHS Commissioner and her team have realized the discrimination, accepted responsibility and starting January of 2013 negotiated with Managed care health plans that manage Medicaid to pay the SAME type of therapies and services as those wealthier fee for service Medicaid autism families get.
It gets better; DHS leadership have also decided to finally have autism therapies paid and actually call it what it is ABA, Development approaches like FloorTime, etc and ask HSAC members (who are so inclusive – these folks will give you a cavity. That is how sweet they are) to recommend a language that will hopefully be introduced in the state legislature in 2013 session. 
All I can say is YAY DHS! Commissioner Jesson – as the saying goes (you have come a long positive way) Fantastic!
Now The BAD:
Remember autism therapy legislation initially started years ago by Rep Norton (DFL) from Rochester that said (autism therapy should only be paid and covered for children who have state regulated private insurance which is less than 30% of the market. It excluded families that have self insurance coverage and most importantly low income families that have Medicaid/MA coverage. Well, Rep Norton is baaaack again with the same legislation with a different number. And even after all of the above – Rep Norton is still trying to convince us the sun rises out of the west and that Minn DHS does pay for autism therapy for low income families. Now what now?
Now the Ugly:
State legislature of the Senate and House is controlled by the same party along with the governorship. This is the same party that takes minority votes in Minnesota for granted and free without anyone asking what the heck have they done for us. In fact, they can speak for us, about us without us. That is right because god forbid we have opinions or ideas. To make matters worse, if you are not their BFF – then whatever issue you are advocating for gets left in the back burner. 
During elections, so many of these folks come to our communities, learn our language, our culture so on and so forth. Once they win – drop us faster than we can blink – what else is new here. Their logo is helping the wealthier autism families will somehow lift our boat – this tide will lift everyone in the boat. The problem is this tide can not lift poor minorities who are not even in the boat and were left out so long ago on the shores or in the middle of the ocean. 
My advice would be we need to use our votes wisely by negotiating with them rather than just giving it to them just to see it wasted. Think about that and don’t be fooled or misled by empty words or useless words. Action speaks louder than beautiful words. 
Then there is the other party of everyone please pull yourself by your boot straps. Now what now! What if you don’t own any boots or have no idea where the straps are located. What – you will lower my taxes – that is like asking a naked and hungry person if they would like a washing machine or spresso coffee maker. Reality check here please.
So, what is a low income and/or minority Minnesotan to do? 
1. Don’t let our votes be wasted on ungrateful or clueless folks. We need to learn how to fish, negotiate for better policies, services and sharing of resources. We need better leaders that are for the interest of the community as a whole rather than being used as a political fools.
Thanks!
Idil – Somali Autism Mom

Category: Uncategorized

Comments Off on Why Does Autism Health Disparity Exist in Minnesota – in 2 words; Elected Officials.

Today in Commerce Committee in Minnesota Senate, Autism coverage for private insurance only – SF314 was heard. This is the same over the top expensive, not based on any research or science for unlimited hours of ABA for all ages – forever bill.


But, I would like to concentrate this blog on the disparity part between middle/upper income autism family vs the low income/minority autism family.

Sen Eaton is the author and in general has a welcoming demeanor, but a hot shot lobbyist who represents ALL white and non-minority ABA providers spoke mostly and as expected exaggerated everything from saying it will cost 30 cents per kid (what now) to this bill is based on research from NIH and NIMH. (really now what now – not true)

OK, as the only one who is a member in the Federal Autism Advisory Committee chaired by NIMH director that is sooooo false and not fact at all by any stretch. But, none of the committee members really cared all that much to ask good questions or double check his over the top claims. 

Then there were some anecdotal testimonies and of course logic and reason tell us research should drive policy, not anecdotal because you can find someone that says lion therapy works for autism. I would even buy that.

Then, I spoke and as usual the only minority and Black person there and as usual the Chair substitute Sen. Jensen cut me off after speaking two minutes, plus her body language was saying – I don’t care and hurry up. As a result, not my best testimony. I should have ignored her and continued to say what I intended.

OK, regarding health inequality and health disparity – I finally figured out why Minnesota is one of the healthiest states, yet has one of the worst health disparities in the country for minorities. The elected officials that minorities vote for who are mostly DFL preach lots of sugar coded words, give us hugs, have latte with us and even if you read some of their background, it can seem as inclusive as Mother Teresa or Nelson Mandela.

But, when it comes to putting their votes to match their words – that is a whole another story. It really does not match and they know it. I think they hope that either low income or minority voters don’t find out which we usually don’t. In other words, if these elected officials knew that their votes were being watched, I am certain they would be aware and cognitive of it. Thus, health disparity would decrease.

So, what happens now. Well – as minorities in Minnesota, we can keep having these endless naps or wake the heck up and assure the people we voted for regardless of their party are actually voting to support our issues and concerns. We must be diligent and never sleep with both eyes while Minnesota session is going which is from Jan to May.

In addition, we are going to start going on Somali radio and Somali TV and maybe other minority media outlets to talk about politicians, their policies and how they affect us.

We need to learn the connection and never vote blindfolded. Another reason is while most mainstream autism families get educated by public funds through MDH, DHS or MDE through mainstream advocacy agencies that teach them how to talk to an elected official and how to tell their child’s story, most minority autism families have no idea because there are almost no minority agencies funded to do the same-thing in way that is culturally and linguistically appropriate.

And, guess who sets these state agency funding policies – that is right the state leader/commissioner hired by – wait for it….an elected official that WE elected.

Now, you make the connection, or I hope you do.
Thanks for reading this post!
Idil – Somali Autism Mom – determined to fight autism disparity from every corner and every alley.

Category: Uncategorized

Comments Off on MN Autism Coverage HF181 advances to HHS Finance Committee – Still Discriminatory Language

Rep Norton from Rochester, MN gets her Autism Coverage bill that will
only help children with private insurance and leaves-out children with
Medicaid/MA scheduled in HHS Finance Committee in Minn House of Reps.


The language of
this legislation is still discriminatory and will create double standard and
here is how;


Example – Two
Children with Autism both named Michael Smith.

Michael Smith A
has Private Insurance, middle/high income family most likely Caucasian.
 

  1.  He gets
    unlimited hours of Autism therapy including ABA, Floor-time, etc.
  2.  His Doctor
    including the owner of the ABA Autism Center can prescribe the hours, the
    intensity, the length of therapy and the duration, it can range from 2 hours a
    week to 40 hours or more a week.
  3.  He can get
    this therapy from age two years old or even younger to whenever as MEDICALLY necessary, even after age 18
    or 21 and older – there is no age limit in this bill for ABA therapy.
  4. He does not have any paperwork from any state agency looking, denying, questioning, or even thinking about it. The sky is not even the limit for this kid.

Michael Smith B
has Medicaid/Medical Assistance – low-income family and most likely Minority.

1.   He gets
limited hours decided by Minnesota Dept of Human Services (DHS) medical
personnel and bureaucrats. (HSAC did not have the guts to write a concrete language that was fair and based on current actual evidence not parent anecdotal and cost effective. One would have thought research should drive policy, not in Minnesota).

2.   He might get
early intervention, if older most likely not (keep in mind low income and
minority kids get diagnosed late to begin with. So, his start time is late
already – but who cares – really).

3.   His overall
therapy is only medically necessary if and when DHS says
it is. And, we all know how quickly – sorry meant slow they move. More like
crawling is their pace.

4.   Bottom line,
at best this kid gets couple of years, maybe 3 years of late, limited and less than 20 hours a week, regulated and
less quality of therapy, and crappy coverage. 
(High quality ABA autism providers will not want such heavy oversight when they can have the easy no fuss kid and who can blame them).

What provider in
their right mind is going to take The MA/Medicaid child who has more rules and
regulations than a boxing match between Tyson/Hollyfield, with all kinds of ears coming of and all. The rules, regulations, denials and paperwork might be as much as Dodd/Frank Act. This will happen for few years. Meanwhile, we (minorities and low income autism families) will accumulate disparity, health inequity and more barriers to equal health
care. 


Then, some of the
same legislators and state agency leaders that passed this law/policy will have
the audacity to come to our communities and tell us “they care, they
understand and THEY want to decrease health disparity), but – wait for it….we
must vote for them again and like them on FB. And ask us to be really really really nice because this time things will change and we should see some light at the end of our health disparity tunnel. They will even learn couple of Somali words and other trivial gestures to make us feel welcomed. 


And, they will
flash their FEEL GOOD legislations and NAACP memberships, Sort of like the
disparity decreasing legislations (HF310 and SF246) now going through MN house/senate.
Ironically many of the same legislators who are voting for the autism disparity
creating legislation also co-authored these feel good & meaningless
policies that are not even a bandage for a health disparity wound that needs an antibiotic or
even stitches. 

I kid you not.
Read it and weep – some of you might regret your vote in 2012.

So, what happens
now?

1. Well, we
certainly don’t have nor can we afford the lobbyists and special interest
providers that are influencing these legislators at the Capitol. 

2. Our
voices/ideas are not sought or important enough when writing these policies.

3. We can start learning and do what WA and FL states did for the double standard and different sets of autism benefits between the haves and have-nots. 

4. Plus,
when there is a will – there is a way. We have the ability and the power to vote,
which is how they got there in the first place and became the hot shot committee chairs,
administrators, LA’s so on and so forth. 


Therefore, we
must know our votes only matter, if we demand it to matter and use it like a
bargaining chip. In other words, we elect them to office (as little as couple
of hundred votes) and they address our important issues that matter to us,
enhance our life, better our children’s health, education and improve our
overall everything. We should not settle their usual give us a fish every other
day just to survive. We must demand and expect to learn how to fish and be part
of the process and of the system.


Insanity is
voting for the same people and somehow expecting different policies. It has not
happened for so many other minorities in this country that have been here a lot
longer. We cannot and should not think it will happen for us without really
re-thinking and having better strategies. 


The only way is
with our voices, our votes and our insistence on fairness and equality from
every corner, river, valley and mountain. 


Think of it this
way; In a marathon race during Olympics – all of the athletes start at the same
lane and the fastest and best wins the race. May the best man/woman win –
right. 


For us, and autism therapy coverage equity –
our kids start with late or mis-diagnoses,
late or less intervention and services. So, how can they possibly ever win or
have a fair shake when the starting point is never leveled or the same. Think
about that! That is why and how health disparity happens, stays persistence and
will never be eliminated. The same people whose policies created this crap are
still in power and we keep re-hiring them. Ask yourself why, only you can
answer and change that.

Not mentioned and will come in upcoming blogs is the lack of scientific evidence for this unlimited hours of ABA therapy for any age/duration and the unsustainable cost to everyone. It is surprising the Finance committee chair will be so blind to this – OK, maybe not that surprising, given that he passed the same ridiculous bill in 2010, but it was caught by Sen Berglin later – really miss her. 

Thanks for reading this post!
Idil – Somali Autism Mom.

Category: Uncategorized

Comments Off on Can Autism Speaks Stop Imposing their views on All of US

First, let me clearly say that this blog is only about the services especially the private insurance mandates or government affairs in Autism Speaks.

I have no issues with their science or research dept, in fact, Dr. Dawson, Mr Rosanoff and Mark R, their previous president whom I met at White House Autism Conference (I know it is still surreal they would invite me there) have been extremely sincere & generous in supporting Somali autism in Minnesota. They contributed $100,000 to the Somali Autism Surveillance study now going on at university of Minnesota. They offer their technical assistance monthly. Dr. Dawson is one of the kindest and inclusive autism researchers in the world. I would say she is a guru in autism research which dates back years and years, yet Dr. Dawson remains humble and approachable – rare combination.
Now, let’s talk about their obsession with insurance companies. I understand that it is good to help children that have state regulated private insurance, but what AS does is come to a state it knows nothing about. They partner with usually the most arrogant and expensive ABA providers and push their agenda. I think this kind of advocacy has not only created disparity because it leaves low income/poor families, but it is very dangerous and disturbing in many levels. 
My advice would be if you are going to a state where there is diverse population of autism families, try to lose the attitude and engage in that community. Maybe, try to send people of color so that they have something in common with the autism community. Try to meet and hear everyone’s views – it is called stake holder input. Practice that AS, it might suit you good. 
In Minnesota, they keep sending village idiots that have no idea except read from a script and push unproven and expensive legislation that leaves everyone except 30% of children whose parents work for a small company. I kid you not, they don’t have access to any information logical, just keep saying the same sentence and hope it sticks with some state legislator who has heard too many bills and had a long day. 
I for one am tired of their tactics. When they come to IACC or any national Autism conference/meeting, they are about diversity, decreasing disparity for children of color, blah – blah. Then they show up in Minn and it is like a hungry shark in a beach. 
I hope our state does not think AS has the answers and takes a look at autism coverage in a holistic, inclusive, cost effective and science based manner that supports all children across the spectrum and across the lifespan. Autism is a lifelong disorder, and what AS is doing is trying to meet some silly quota that is short sided and in a way arrogant and ignorant about the reality of autism in the real world and how real families of all socioeconomic and racial families deal with it.
Thanks!
Idil – Somali Autism Mom

Category: Uncategorized

Comments Off on CAA (what does it do and how does it help Autism

Combat Autism Act of 2006 by President Bush and reauthorized in 2011 by President Obama is suppose to fund autism research, services and resources. This includes many areas, such as funding the InterAgancy Autism Coordinating Committee (IACC), funding the Leadership in Neuro – Development & Disability (LEND) fellowship which now funds 43 universities across the United States, Fund parent to parent agencies in almost all of the states for parent awareness and education on autism’s signs and symptoms. It also funds the Autism Development Disability Monitoring Surveillance System (ADDM) through CDC (Center for Disease Control) to name just few of the programs it should do. 

On the surface, it seems to do a lot and they all sound really good – right.
Here is my view as I always see things from a minority viewpoint. 
First, Health Resources Services Administration (HRSA) which funds many of the CAA programs is at the very least sleeping at the wheel when it comes to assuring disparity is decreased, parents from communities of color are educated and learn about autism so that they can help their children. They are completely clueless when it comes to assuring that the 43 LEND fellows and community fellows are diverse. In fact, when I asked them they seemed baffled by the question. One even told me that she is black and works there and therefore how can there be disparity. I kid you not.
I did not know whether I should cry, laugh or party like it is 1999. I was so sad and frustrated by that answer that I now make it my business to keep complaining about HRSA so that they come out of their shell, comfortable heated/air conditioned office into the real world of disparity, consistent gap in minority autism families having access to the same services and therapies. 
I am hopeful that one day the words of MLK will be true whereby we will all be judged by the content of our character not our color. The fact that a country with such wealth and prosperity has so much disparity for folks of color is very real, sad, and should wake all of us up. 
HRSA writes and implements guidelines and policies for all state health departments to follow in order to get child and health maternal block grants, family to family voices grants, LEND fellowship grants, training tomorrow’s pediatricians and so much more. Now, if they wrote those guidelines in a way that assured equality and opportunities for minority community agencies and minority autism families – I am certain disparity and bias prejudice policies in state level public health would disappear. For example, HRSA can say (in order to get this grant – a grantee must collaborate with minority and under-served community based organization, it must show with clear data how it intends to outreach and educate those families. What they normally say is please do your best in diversity outreach and that is not good enough as it clearly has not worked. 
I would ask that HRSA write clear messages and statements on diversity, sharing resources, collaboration and inclusion in their grant guidelines. Nothing less will do or will create an environment of equal opportunity. HRSA has to say what it means and mean what it says. If it is really serious in decreasing and eliminating autism disparity then practice your words and mean them. I must say – I am cautiously optimistic especially if we can connect the dots to politicians who fund HRSA and can ask for feedback. These are the same politicians that we all voted for. 
Thanks!
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

Comments Off on Autism Discriminatory Coverage Bill Passes MN House Commerce Committee

HF181
which only wants to help children with autism that have private insurance with
unlimited, untested fully and costly passed the House Commerce Committee
chaired by Rep 
Atkins.


I signed up to
testify against this bill and was the only Black/Minority person, not a shock.
I should get used to this by now. First, Author of the bill Rep. Norton gave a diluted version of the
legislation stating Medicaid pays for ABA already for low-income families,
despite the fact that it does not because MN DHS does NOT have the authority to cover ABA by CMS. But, no one from the Committee
questioned this or asked DHS folks who were there.


Then we heard
from two Caucasian parents who gave their take of the bill and how CMS, NIMH,
and other Federal agencies recommend it. I am sorry, but as the only one from
Minnesota in the Federal autism committee – that is really false. Again, no one
verified or checked IACC’s autism website or U.S. HHS’s site for autism
which has the latest national autism plan. Recent research stated at best
modest results of up to 25 hours including parent training and not unlimited
hours that can cost up to $100,000 per kid per year. There are about 17,000
kids with autism in Minn – you do the math. In addition, the Chair and overall
the committee were engaging, friendly, sympathetic and gave them an ample time
to make their case. 


Then, they call
my name and after speaking for two minutes, Chair Atkins cuts me off and reminds me my limited
time. There was no engagement, listening or any real interest in my testimony.
Nor did they have any questions or comments about it. Business as usual.


It felt like I
was in Alabama in the 1950’s in Gov Wallace’s committee, except this was 2013 and in
Minn in a leadership that won as little as few hundred votes in districts that
have thousands of minorities. They were overall cold, distant and could care
less about the lack of evidence for the bill, the high cost with no check and
balance or excluding low income families who are mostly minority autism
families. 


My favorite line is when they say;

I care about
disparities because I have been working on it for decades. Clearly whatever you
have been doing is not working, given that Minn is at the bottom of the pit of
health disparity including autism.

My family member
is a minority. Sen. Thurmond also had an African American Daughter,
yet voted against all major civil rights policies.

My best friend is
Black, only if I had a penny every-time I heard that.

I understand your
anger (except when Caucasians do it, its called frustration – us, we are
angry). Somehow these policy makers don’t seem to think their policies have
created disparity in autism. In other words, we should take whatever leftover
they give us, process it, digest it, like it and thank them for it. 


Great! Your votes
at work.


Thanks!


Idil – Somali Autism Mom

Category: Uncategorized