Lawmakers respond to Autism Nov 29 2012, Parents still frustrated

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.

Category: Uncategorized