Monthly Archives: February 2013

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

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

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 –

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.
Idil – Somali Autism Mom

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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. 
Idil – Somali Autism Mom & Minority Advocate

Category: Uncategorized

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

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 

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

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.


Idil – Somali Autism Mom

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Comments Off on IACC Meeting – Tuesday Jan 29, 2013

IACC (InterAgency Autism Coordinating Committee) met for a full committee meeting on Tuesday January 29, 2013 at NIH main campus – Bethesda, MD.


This meeting was intended to finalize the final Autism National Strategic Plan which has 7 questions from diagnoses, services, cause, biology, genetics, environmental factors to the surveillance system in the country, which is where we get the 1 in 88 number. For the past year or so, we looked at national and international studies done and published. 
Some of the highlights that interested me were; the need to decrease the persistence racial/ethnic services and research disparity. To increase the diversity of autism workforce in services and research fellows through CAA funded programs. I am excited about this. Even HRSA is picking up here by asking their 43 LEND university programs to assure there is an increase diversity in their graduate fellows. They told me they now have a better way to measure and if a university is not following such guidelines to hold them accountable. Finally HRSA is looking colorful – I am beginning to like them a little. The devil is always in the detail especially in their child and maternal health programs which sorely need improvement. 
Dr. Cordero from Univ of Puerto Rico did a presentation on autism prevalence there. There is no ADDM system there and got data from dept of education. 1 in 62 kids were autistic similar to Hispanic population in the U.S and if a parent was born in USA, the more likely they were to say their child had autism than if they were born in Puerto Rico. Again, this emphasizes the need for considering cultural perspectives on autism diagnoses and intervention. 
Dr. Fein from Univ of CT (Fein et al (2013) J. Child Psychology and Psychiatry presented findings on optimal outcome in children with autism by tracking children that got early behavioral intervention. The 1987 Dr. Lovaas study of 40 hours of ABA whereby out of 19 kids, 47% entered kinder garden in regular classrooms had been attempted but the same results were not replicated. In addition, normal IQ and functioning in regular class-room did not mean losing the autism diagnoses. Sutera, S., et al (2007) 73 children diagnosed with ASD at age 2 followed to age 4 and 13 (18%) lost the diagnoses. I hope states take this data into consideration as they write policies and legislations. Dr. Fein also said high rates of repetitive behavior do not prelude OO. (optimal outcome). This gave me as a mom hope. In other words, children who get early behavioral intervention do better though not necessarily lose the autism diagnoses. In addition, this study had very little ethnic or geographic diversity as it was mostly Caucasian and done in East Coast states. It is my hope that future NIH funded research will require diverse population to get an optimal view of autism. 
Another interesting research done by the Lewin group looked at autism medical claims of behavioral therapy, mental health treatment and pharmacy data. Of the half with available data, over 75% were white and 80% were male. It found that ASD children had more sleep issues, gastrointestinal and nutrition problems. ASD siblings were less likely to get vaccines and ASD parents were more likely stressed. No surprise here. These are symptoms and issues that are real and we live with it daily. 
Finally, we got to IACC business and how to assure we take an active & more assertive role in advising the Secretary on services delivery rather than only services and policy research. In other words, families are on fire and need services now. My advice would be to ask Sec Sebelius and Congress to change CMS rules and allow behavioral therapy in EPSDT so that all low income families can get access to it. In addition, we need to add it to ACA – but at the same time and not leave the low income kids who are mostly minorities on the back of the services bus. Perhaps Minnesota can take note here. Let’s hope state legislators help all kids at the same-time for the same coverage of benefits. Nothing less than that will create even more disparity and health inequity.
All of the Federal and Public members acknowledged the need to close the disparity gap in diagnoses, intervention and family support. When this finally happens, I think I will party like it is 1999. Everyone talks about disparity and diversity, but few agencies both public and private actually practice it. 
In Minnesota, there has been a legislation introduced by DFL representative Norton and  DFL senator Eaton that mandates private insurance to pay unlimited autism therapy. There has been nothing equivalent for low income children that have public insurance/Medicaid. President Obama said once “Republicans want poor children with autism and disabilities to fend for themselves”. Minnesota Democrats who introduced, co-authored or allowed it in their committees want poor children with autism to FEND for themselves now. This kind of deliberate disparity creating policies are wrong at its core.
One day soon every child/adult with autism will get the medical services and intervention he/she needs. That is my goal and hope. We in the minority communities especially African Americans need to learn the connection between politics to policy to services and resources as well as diverse workforce. We elect public officials to represent our concerns not throw us under the bus. That is what is happening in Minnesota state capitol for poor children with autism. Your votes at work. Think about that and vote differently next time or disparity will remain our first name, wide achievement gap our middle name and screwed our last name. 
Idil – Somali Autism Mom. 

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Comments Off on Please VOTE NO on HF 181 – Autism Therapy discrimination Bill

House File #181 was introduced by Rep Norton (DFL) from Rochester, MN on January 30, 2013.

This is the same legislation that was introduced for years now with different numbers and failed year after year in both DFL and GOP held Committees with HF359, HF204, HF1079, SF1071. It had more number changes than P. Diddy had name changes. The numbers changed, but NOT the language, it is still the same old tired, bias, prejudice and non research based language that logical legislators voted NO before. Further, NO other state in the country out of the 37 states with autism coverage have this kind of language.
Note; while 37 states have private autism coverage only 9 states have Medicaid autism coverage. (think about the level of racial and economic disparity that has created. Why would Minn add to an already boiling injury).
Here is why it failed and we hope it does again this year:
1. It says Autism therapy should ONLY be covered for children that have private state regulated insurance which is less than 30% of the market that leaves more children than it includes.
2. It leaves out low income autism families many of whom have Medicaid (Medical Assistance). Wrong in every sense of the meaning of the word!
3. It leaves out children whose parents work at Target, Walmart, Best Buy or any big self funded insurance company. This includes the engineer at 3M, the overnight cashier at Walmart or the sales person at Best Buy.
4. It gives over-reaching power to few greedy providers without any factual research from any double blind study anywhere in the country or the world. For example, no research that is objective says 40 hours of intensive therapy is good for a 2 year old, 5 year old, 10 year old and a 20 year old. See below links from IACC (Federal Autism Advisory Committee) recently published national strategic plan for services research & policy which is what Congress and the Sec of U.S Health & Human Services use as a guide for all autism issues in the country. Why is Minn coming up with untested, unproven and expensive coverage. Who exactly benefits from that, certainly not the children because research should drive what, who and for how long therapy is provided. HF181 is being driven by expensive, elite and racist lobbyist and their legislative puppets without any base for scientific based research and equal justice by choosing losers and winners. Shouldn’t all children be winners?
5. By taking comments and advice from overpaid and arrogant lobbyist makes Governor Wallace (DFL of AL) seem like an inclusive angel. Their goal is autism disparity today, Autism disparity tomorrow and Autism disparity forever. The sad thing is – this is 2013 and we have a Black President. This kind of exclusive arrogance is why disparity for Black and Latino autism kids is extremely high. The current language of this autism coverage legislation HF181 only promotes and enhances deliberate discrimination and more health inequity for the have nots. 
6. It mentions Lovaas therapy as a method of autism therapy. Dr. Ivar Lovaas did a study on autism and ABA which has never been repeated whereby the same results were gotten. In addition, there are many kinds of ABA such as VB, etc and I don’t see those folks names being called as the actual therapy. This is the provider who tried to tell Minn dept of Human services (DHS) it is medically necessary to bill for three different therapist at the same-time, for the same child and claim it is medically necessary whereby a judge in Ramsey district court for the unth time ruled wrong and not medically necessary, nor is it allowed by DHS, CMS or Congress. See below articles. For instance, who the heck gets 3 bills when you go to a clinic (from the receptionist, nurse and doctor) You get one bill – it is called cost of doing business. This provider is so greedy that AIG & JP Morgan look like Mother Teresa angels.
7. It leaves out other equally helpful therapies that are based on developmental and play approaches such as EDSM, FloorTime, etc. Well – actually I heard because they too have lobbyist and the funding to fight, their language was just added yesterday. 
8. It leaves out people that are public employees and have children with autism.
9. Those deciding and helping Rep. Norton are as white as Minnesota ice and lack diversity and inclusion from racial and socioeconomic lower families. This kind of tactic is why we have such high health disparity in Minnesota – one of the worst in the country. I am beginning to see this is not an accident, rather subtle policies that deliver disparity all while giving us a hug, smiling and saying we care. What a load of crap – if you don’t mean your words then please don’t patronize us. 
10. Rep. Norton wants to dictate, mandate and order private companies to pay for services it is not willing to cover for its own patients of Medicaid who are the most financially vulnerable and can not by any means afford autism therapy. That is like going to your neighbors house and demanding they feed their kids and clean their house, while your own children are starving and your own house is dirty. Isn’t this the ultimate elite way to write any legislation? I would say it is DOUBLE STANDARD access to health care services at its best.
Rep. Norton, why not have adult conversations with families from North Minneapolis, South Minneapolis, Mankato, St. Paul, Blacks,Whites, Hispanics, Health Plans (since you want to order them around) and Minnesota department of human services so that you get a consensus whereby the children win not some arrogant and ignorant lobbyist or their employer?
I urge Committee Chairs in both the house and the senate and others to please ask Rep. Norton to go back and work on this legislation in a holistic and fair manner. Because right now it sounds disparity today, disparity tomorrow and disparity forever. And, that is wrong in 2013 and a Black President. 
Idil – Somali Autism Mom. (please vote on the side of fairness and equal access for all)

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