Monthly Archives: November 2012

Comments Off on Federal Government’s Response to 1in88 Autism Rate

On Nov 29th 2012 at 2pm, there will be a hearing that has been pushed by many autism families at Oversight and Government Reform Committee in Congress. There will be two people from the Federal government – NIH and CDC, (Dr. Boyle and Dr. Guttmacher) both very nice and understand the urgent need for autism to be addressed. There will be six people representing the public or autism families including two on asperger end of autism, three fathers and a grandfather. None of them are from a diverse community, none also are mothers. (research states autism mothers have a stress level similar to a combat soldier, yet no autism mom is represented in this witness list – not good in my humble little opinion).

As I predicted – this group while impressive does not reflect the whole story of autism faces in this country at least in diversity as there are none and in those of us parents whose children are on the classic or nonverbal side of the spectrum who want a cause, cure and a prevention and are not afraid to say it.

Who speaks for us and our children? Aren’t they as American as Apple Pie, whose stories and voices should heard even if they are nonverbal?

I personally have reached out to Congressman Cummings and Congressman Issa as well as retiring Congressman Burton. I also sent comments and questions from our perspective.
Research indicates that Black and Latino children in this country are diagnosed with autism years later and do not have access to early intervention services and therapies in a timely manner. Thus, the need for diverse autism professionals who understand these communities and can provide early screenings, diagnoses and therapies is critical and can not wait. The cost of not doing it will be unsustainable.

The Federal government especially through the funding of CAA has a responsibility to assure equal opportunities for all American children with autism through education, awareness and resources, and the agency responsible for this is Health Resources Services Administration (HRSA) and has failed miserably. Plus, if the goal is to learn the signs early in order to act early for your child, then we must figure out where to get those early intervention services because Medicaid does not pay for them per EPSDT guidelines written decades ago by congress before autism, and even private insurances don’t pay for early intervention unless parents sue or states pass legislations for state regulated only insurance companies. In other words, what is the point of learning the signs if there is no consistent way to get the early intervention?

We ask Congressman Issa and Congressman Cummings to speak on behalf of all autism families including those not represented by asking the right and responsible questions to assure fairness and equal autism services for all.

We also ask they question and demand the need to find a cure for autism so that our children have the ability to communicate and function as independent as those who will speak on this committee and are on the spectrum. A cure does not mean an elimination of asperger autism, it simply means our children having the same level opportunities to advocate for themselves and live independent functional lives as they choose. It means helping children who don’t sleep, don’t eat or over eat, have no fear of safety, can’t say a word or only repeat words endlessly with no meaning reach their God given full potential. I urge parents of those children to stay vocal and have persistence of laser like focus until our kids are able to tell their stories and live their own lives based on their choice. We must stay at it and never let them down by giving up or accepting less for them.

We ask the committee members to recognize that there are thousands of children/adults with autism who are not able to speak and their families are desperate, frustrated and deserve action now. Please have the courage to speak for our children and their families. We hope this is one of many hearings in Congress to address this crises and next time – the witnesses are more diverse by reflecting the faces of American Autism.

God Bless and Thanks.
Idil – Autism mom
Below is the link of the hearing and witness list:

Correction: (Wrote Durbin instead of Burton who has an autistic grandson and has been a vocal advocate for many autism families. Due to lack of enough sleep because autism and sleep are often not friends). I apologize for the error.

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Sept,2012 – HSAC and Autism – my take

Comments Off on Sept,2012 – HSAC and Autism – my take

During the session of 2012, the Minnesota state legislators asked Minn dept of human services to form an advisory group that comes up with specific autism benefits, HSAC.
Health Services Advisory Council is made up of autism professionals and consumer reps. They are mostly from children’s hospital, DHS, insurance companies and autism therapy providers.
They meet monthly and their report is due in Dec for the upcoming legislators to discuss. So far their meetings have been public, they also allowed public oral or written comments. They seem fairly objective and fair group of folks who really want to look at current autism research and come up with a holistic approach that will help children and adults with autism across the spectrum.
They looked at the AHRQ recommendations as well as CDC which often say at least 25 hours of intensive therapy. They also realize that there is no one size fits all autism therapy, simply because if you met one person with autism, you met one person with autism. Autism symptoms vary so much in every child, and it is hard to say what would work for kid A would work for Kid B. ABA, RDI, Floortime, SLP, OT and EDSM are only few methods of autism therapy and this council not only realizes that, but they understand it.
I for one love their approach, their transparency and their willingness to do it in a public forum that is open to the public. After all, the funding is public funds. Therefore, decisions must be public and inclusive.
I am eager to see what their final outcome is and now that there are a whole new take over in both Minn house and senate – though not really hopeful of its fairness, I am optimistic.
My hope is they recommend at 25 – 30 hours for children 0 to 12 and 20-25 for children 13 to 18/21 years old. They also would recommend a place within DHS for parents get support and assistance with providers since this will be from Medicaid/MA. Right now, there is none and usually is the providers way or the highway. If you have not send or commented in person, I highly recommended regardless of if you are a parent, relative, therapist, provider or payer. I think it is important to hear everyone’s views and challenges so that our state can finally have an inclusive and fair autism benefits. You can send or view prev comments at;

HSAC and Autism Information – check it out here

Idil – Somali Autism Mom.

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Comments Off on Oct 2012, Politics and Autism – what is the connection.

In one month, Americans will go to the polls and elect a president, congress, senate and many state legislators.
Let me give my take how Autism is all about politics.
For instance, the president hires the health secretary which is in charge of all of federal health agencies that will or will not address autism research, services and policy. Those include the important ones of NIH, CDC, HRSA and CMS.
Now, in the interest of fairness – I am a little bias and very grateful towards Obama for many reasons.
1. How many people can say they have been invited to the White House.
2. Out of countless submissions, I have been selected 1 of only 15 public members for the federal advisory autism committee, IACC. Very grateful again.
3. How many people can advocate in federal health agencies and actually get the funding. Awesome.
So, I would probably give the president a B+ grade, while I am grateful, the need for more is big from research of environment from NIH/CDC to better services and resources from HRSA agency, not to mention the lack and delayed minority diagnoses and CMS hardly funding any autism therapies. Plus, the new health care law covers or funds zero autism therapy including the ones recommended by their own federal agencies.
I would give Romney D+ because I could only find one youtube vidoe whereby an autistic child asks him his take and he only said we will do research and did not really give any specifics. I am not sure if they have an specific plan and when I called their campaign, they said the same-thing. If he wins, maybe he can learn or at least appoint good experts. Here is the youtube link;

Now, lets dissect Minnesota legislators and elected officials,
1st, Gov Dayton has done almost nothing for autism in Minnesota, nor has his health administration. In fact, we can’t even get them to do what they are funded for in their child and maternal health dept, under children with special health care needs which autism falls under. So, he gets F-.
The House and Senate leaders get A+, because they did the following;
1st. They funded a Somali autism study for $200,000 to start this year.
2nd, They asked DHS to finally come up with specific autism benefits under their HCBS waiver that they submit to CMS.
3rd, They wrote and passed the Minn state autism task force which I have been appointed by Speaker Zellers. Grateful as well.
4th, There is hardly any drama if you call and ask for any autism questions or have concerns, what you see is usually what you get. Awesome.
5th, They have allowed more people to testify on behalf of autism in their health and human services committees in the house.
6th, the 8 congress and 2 U.S Senators we have, of the ones up for re-election, Sen Amy K is C grade, Rep Kline A-, Rep Peterson A-, Rep Walz A-, Rep Bachmann A- and Rep Ellison B-.
They are mostly OK, give or take depending what you ask them to do. They did all support the passing of CAA in congress last year.

I know Minn is a wild card and one never knows who will win. I do hope that we vote based on issues and who ever gets elected is asked for to deliver their campaign promises and if they don’t we remember it, the next time they come back for the same job of representing us.

Democracy in this country is only as good as our elected officials and how well they represent their constituents issues.

Thanks and please remember to VOTE on Nov 6th, 2012.

Idil – Autism mom.

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Comments Off on Lawmakers respond to Autism Nov 29 2012, Parents still frustrated

Oversight & Government Reform Committee in Congress had
an autism hearing on November 29th at 2pm for
about three hours or so. It was really long and I did not learn anything new. 
If I could sum it up in two words, it would be frustrated parents.

1st Panel: 

Dr. Guttmacher from NIH spoke and basically highlighted what NIH and IACC are
doing about autism research. Then Dr. Boyle from CDC spoke
and explained the ADDM surveillance system, the 1 in 88 rate, Learn the signs & act early
online campaign, and how there are other federal agencies that also serve
autism families who were not there such as HRSA (the lazy & over-paid agency), CMS (the
tired and under-paid agency), ED (the not coordinated and out of touch agency), DOL (the out of sight agency), DOJ ( the really confused about autism civil rights agency).

I think overall,
these two federal government representatives did good with what they had to
work with and remained cool, calm and collected despite the many many
frustrated, pissed and really tired parents sitting behind them. And, the
curious and hard questions from the committee members.

In a nutshell,
they did not have any ground-breaking news or information. Business as usual,
learn the signs from online so that we will not be able to pay for what we tell
you to get for your child. And, if you are a minority parent, then you are
really screwed because your kid is behind all the time. I like both of these
people personally, but we needed more specific of what needs to be done now and
in the future to tackle autism.

2nd Panel:

Mr. Wright,
autism grandfather and Co Counder of Autism Speaks said “CDC
 is passive and they along with NIH say
– we are sure, but we don’t know or we are not sure, but we know and we are
broke”. I loved that –
 soooo true.

Mr. Badesh, autism father and president of
Autism Soc of America said there is a need to
close the diagnoses gap for people of color, Medicaid services/waivers should be
transferable to other states if families move, especially for military autism
families and to decrease the thousands of autism people on the wait list for
Medicaid waivers/services. I agree 100%, but remember CMS is
the tired and under-paid agency. In fact, autism therapies so often recommended by CDC and NIH are NOT paid by CMS because Congress did not change rules governing Medicaid policies in over 40 years, before autism therapies were known. It is too bad no one
asked this when members wanted to know what they could do to help.

Mr. Blaxill, autism father said autism is
high because it is high, not because of better diagnoses or DSM changes. I think he is right. He also
asked for more environmental research especially vaccines. I think he had the most critical comments for government health agencies.

Mr. McGarry – autism father and works with asperger college students in PA advocated for
transition to college services. I think he had the most neutral comments – overall.

Mr. M.J. Carly – autism father and on the spectrum
himself. This testimony – I disagreed with mostly because our kind of autism is sooo not
like this. He had no meltdown, regulated his over/under sensory, spoke in
sentences, looked people in the eye, did not stim,
– I can go on, but I am getting depressed. Then, Mr. Carly said autism is not a medical condition
that should be cured, not a health crises, but a services crises. OK, I really empathize with asperger people, and I really really really
hope they understand our pain in wanting our children to have independent
functional lives like they do. And that when we say we want a cure, it simply
means a cure for their symptoms so they can speak verbally, not have hours of
meltdown because you took a different road home, go to college, get married
and have children of their own. We want our children with classic autism to have
good health and happiness just like any other parent would. So, please if you
have these things, don’t stand and suppress your fellow autistic friends. 

Finally, Ari spoke
who is also on the spectrum and has aspergers.
He said there is a need to assure low income and minority kids get diagnosed
the same age as their fellow white autistic friends. He also said there is a
need to have services in a manner that is culturally competent. Yay Ari,
though I doubt Lazy HRSA is listening or even cares to change
that. I must say Ari whom I had many disagreements with
over cause and cure said many words I like that were welcoming and understood
the need to help those in greater need and have autism. Thanks Ari!

While, I was
thankful to everyone that mentioned disparity and how to tackle that in autism,
I noticed as I said in my prev blog, this group lacked diversity in
color and gender. I also noticed the audience lacked color as well. This made
me think and look into it deeper. 

Here is my theory;

1. To be an
effective autism activist takes lots of time and energy. Most minority families
lack the proper support and don’t have the time or the energy to do this.

2. Many autism
parents are thought and trained by state/federal agencies or those they fund on
how to advocate for your child and how to tell your child’s story – even how to
talk to an elected official. This does not happen in communities of color
because almost no agency of color is funded to do this.

3. When minority
parents make their case, ask, complain, and complain more – we are called, wait for it —– angry ???? parents
even though what we are saying is similar or even less vocal than what our
fellow friends are saying, but their complaining is out of FRUSTRATION and ours
is out of ANGER. I wonder where I heard this before? Oh yeah, state health agencies that are responsible for addressing autism. Now, I remember it.

I think such
deliberate, dismissive, disrespectful, and discriminatory tactics are why you hardly see any
autism parents of color. 

My advice to you
would be – don’t let this prejudice, bias and full of #%* bureaucrats get you down. We need to keep fighting
and speak even louder for our children and for our communities.

Now, let’s talk
about the members in this committee;

1st, Chairman Issa and
Ranking Member Cummings did an amazing job by asking
questions, showing compassion and assuring there will be more autism hearings
in Congress in the near future. I just hope the next witness list is
diverse in ethnicity and in gender as well as other federal agencies, not just CDC and NIH. Please invite Lazy HRSA, I bet they will be too lazy to show up.

2nd, there
were many representatives who were not in this committee, but asked to participate because
they care about autism and how it is affecting their constituents, from UT, FL,
NJ were among them. (notice none from Minn – for the record, ours were sleeping or napping during this time because it was after lunch – you know). My Fav is
always Congressman Smith of NJ who speaks with care and compassion. It shows
in his body language and in his words.

Thanks so much
Rep. Smith!

I also really
want to thank Congressman Davis of ILL and Congressman Kelly of PA. They asked
why is disparity so high in low income and minority families and what they could to
do to help out. So did Rep Cummings who asked what services are lacking
for support now as well as for future research, Awesome questions.

I think Rep Davis
said my fav line in this hearing;

Where there is
life, there is hope and where there is hope there is life. So, we as parents
must keep marching on because the fight continues and struggles shall be overcome.

God Bless:

Idil – Autism mom.

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