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Mr. Ne'eman, at this point in time I recognize you
for your testimony.
- Thank you Mr. Chairman, ranking member
Cummings, and esteemed members of the committee.
My name is Ari Ne'eman, I represent the
Autistic Self Advocacy Network, an organization run
by and for autistic people. I also previously served on the
Interagency Autism Coordinating Committee, and let me
just say, as an autistic person and as a tax-payer,
I want to thank you for giving self advocates a seat at
the table today. I'd like to begin with a story.
Earlier this year I was visiting a service provider in New York
and I happened to meet a young man, my age, we'll call him
Joe. And Joe is autistic, like me, but unlike me,
Joe doesn't speak. He had come in with his father
to try and find a job, and I had a chance to sit down with
Joe and his dad, and ask them questions.
And Joe, despite not speaking, found ways to be very
actively involved in that conversation. He pointed at what
he was interested in, shook his head at what he wasn't.
He had plenty to say, and few people had ever bothered
to pay attention. No one had ever given Joe the simple
support of a communication device. That technology
exists, it has for years, we just don't invest in it.
I think about Joe a lot at times like this, because the
current autism research agenda largely ignores his needs.
I'm a big believer in the old maxim,"In God we trust,
everyone else please bring data." So if you don't mind,
I'd like to point to some of the data in the autism research
agenda and see what it shows us. In 2010,
NIH spent about $217 million on autism research.
Of that, only two and a half percent went to research
on improving the quality of services. Only
one and a half percent went towards research on
autistic adults and our needs. Now, when you compare that
to the percentage of the research agenda focused on
causation and biology, the attention paid to the needs of us
here today is laughably small.
I'm not here to speak for all autistic people, that's impossible
but I am here to speak for the right of every autistic person
to get the support they need to speak for themselves, and
not to be written off as victims or burdens.
Now, some have tried to justify the lack of attention paid to
services and adult issues through talk of an
epidemic. I don't happen to subscribe to that theory, but
if we wanted to study it, and evaluate it scientifically,
a very simple step we could take would be to research
the prevalence of autism in the adult population.
The United Kingdom in fact conducted that study, and
found a comparable rate of autism in adults as in children.
We should be doing that here, and regardless of the result,
we would gain valuable information on support for
autistic adults. I want to highlight three additional points,
and noted at more length in my written testimony.
First, I think it's very important to stress that there are very
severe racial, income, and gender disparities in the
autism world. As was mentioned earlier, African American
children are diagnosed significantly later than Caucasian
children. Department of Education data has also showed us
that low income and minority youth on the spectrum have
the lowest rates of employment and higher education
access in the years after they leave school.
We also know that gender plays a big role, and many
believe that the 4-to-1 ratio of boys to girls being
diagnosed is at least partially a self fulfilling prophecy
with girls less likely to be identified because they don't fit the
stereotype. Second, I think that it's important that when we
talk about autism services, we're mostly talking about
services with the word "disability" not "autism" on them.
So we have to talk about programs like IDEA and Medicaid.
And a few words on Medicaid in particular:
The vast majority of disability services are financed through
Medicaid. If that program were block granted, or otherwise
significantly cut, those services would be devastated.
I cannot emphasize this enough. Ending a robust federal
commitment to Medicaid means ending any meaningful
chance we have to support autistic people.
Third and finally, I want to stress the importance of building
a pathway to employment for my community. Our current
disability service provision system actually makes it very
hard for people who want to work to enter the workforce.
If you are leaving school, you have to choose between
going without support, or committing to exiting the workforce
to qualify for SSI and Medicaid. Quite frankly, that's just
bad public policy. If you want autistic people to be tax paying
citizens, and we want to be, we need a service system that
emphasizes employment. The Affordable Care Act has
made some progress towards those ends. Another good
example of what we can do can be found in the
TEAM legislation, a bi-partisan collection of bills on transition
for youth with disabilities, introduced by representatives
Harper and McMorris Rodgers. In closing, I'd like to point out
that historically, most disability movements have a certain
life cycle, and autism is no exception. In the begining, most
public attention focuses on questions of cure and causation.
But with time, both advocates and policy makers realize
that the real issues relate to helping support and defend
the civil rights of people today. Now, in autism that process
is still going on. But I'm confident, I'm confident because
I believe this is a civil rigfhts issue, and I believe that the
United States of America can guarantee the civil rights of
all of it's citizens. Thank you very much, I look forward
to your questions.
- Thank you Mr. Ne'man, and thank you to each of the
panelists. Now in regular order the chair will recognize Mr. Burton
from Indiana. Mr. Burton?
- First of all I want to thank you all for being so patient.
I mean, we grilled those people for what, about 3 hours, and
you had to sit there. So I want to tell you, I'm amazed that
your posteriors could survive that long.
That's the first thing. The second thing I'd like to say is that
Abraham Lincoln said, "Let the people know the facts,
and the country will be saved." And one of the problems that
we have is that I don't think there's enough information
getting out to the people who are not affected. I was like that
I didn't know much about autism until my grandson became
autistic. Then all of the sudden it became a cause celebre
for me and that's, it was fortunate I was chairman at the time
so I had the resources at my disposal to do something about
it. So, I asked my staff, "I want you to get a copy
of this whole hearing. Every one of you. You can get it on
the internet." [aside] What's our internet website?
Government oversight.house.gov, Government
oversight.house.gov
and I would urge all of you to disseminate this whole hearing
and try to get as many people as possible to look at that.
Because the more people that know what's going on and
understands it, the more likely we are to get some kind of
positive result out of the FDA and HHS. They get a lot of
money over there. I don't know why in the world they can't
allocate more money for this whole issue. And that's why
it's important that you keep beating the drum. I'm retiring
this is my last year in office here- I've been here 30 years-
but my last year. But I want you to know, any of you that
have a need, any of your organizations, you get a hold
of me and I'll do everything I can to help you because this is
something I feel very strongly about. Now the other thing
I want to talk about is, we have what's called the
Vaccine Injury Compensation Fund. It has $2.4 billion in it.
And it's not being disseminated to people who have
damaged children. And it's because we have a system which
was supposed to be user friendly, that is not user friendly.
We have special masters who are saying, you know,
we can't prove or we can't make sure that this person
deserves any money out of this fund. So I think it's important
that we beat the drum on that. Because there's
2.4 thousand million dollars in there. And there's a lot of
money for people who really could use it, and that
was put in there by the pharmaceutical companies to
help people in a user friendly way to solve these problems.
I think that's about all I have to say except I'm very
sympathetic to all of you. We've had, I don't know how many
hearings on this subject over the past decade,
but the problems just keep getting worse and worse
and worse. And we really need you not only to be the
foot soldiers, but the people that are going to lead the
charge to make this a cause celebre for everybody, even
those who aren't affected by autism. It will affect everybody
that knows anything about autism, because these people
are going to live as we said before, you've all mentioned
this to a degree, these people are going to live for some
time, and their going to be burdens not only on
the families but on society. We had people come before my
committee whose children they were afraid of, they would
lock the doors when the kids got out of control because they
were so big. People that mortgaged their homes and lost
everything they had taking care of their kids. That is not
widely known. And that's why it's important that you guys
keep beating the drum and get the message out there. Not
just for your families, but for everybody in our society.
Thank you Mr. Chairman, I yield back.
- Thank you Mr. Burton, and thank you for your passionate
advocacy on this issue for your tenure, and we generally
appreciate your leadership and look forward to hoping we
can continue to carry the mantle. At this moment, let me
recognize the distinguished ranking member, Mr. Cummings.
-The, I want to thank all of you for shedding so much light on
the subject. I think that my frustration comes
with regard to trying to make sure that we take your pain,
as I've been telling you Mr. Wright, that has now been
turned into a passion, to make sure that you carry out your
purpose to help the folks that you want to help.
And I'm sitting here trying to figure out how do we
effectively and efficiently use your energy and your passion
so that we get something done. I was listening to you
Mr. Blaxill. If I understood you correctly, it seems as if you
feel there has been a lot of game playing. And I don't know
if you used the word "fraud" but you came pretty close.
And you know, as I listen to you all, and I think about
how these numbers are increasing we are marching into a
very very serious situation. And I know you, Mr Ne'eman,
you said don't call it an epidemic or whatever you said,
but this is serious stuff. You got, and you all know that, I'm
just listening to you. You've got parents who have to give
a lot, and so their productivity is effected. We've got
people who are struggling with this, and not getting the
services that I guess could make them even more
productive. Am I right, is that what you are saying Mr. Carly
-It is, it is, and I do want to reinforce that this is in fact
very serious. My concern with the rhetoric of epidemic is that
it A, seems to stand in contravention to a growing amount
of science exploring whether or not we are seeing a rise in
incidence or a rise in diagnosis. But B, I'm concerned about
the population that congresswoman Norton mentioned
earlier, many of who are my members and Mr. Carly's
members, who have often gone for decades without
diagnosis, or who have been misdiagnosed. The perception
that autism is some recent new thing has been very
damaging, in part because it's meant, when we talk about
autistic adults at all, which we do very rarely,
we never talk about their needs. We always talk about it as
something very recently on the horizon, or about to be on
the horizon. and we have to recognize, this is a very serious
situation, it's a very serious situation now, and it's a crisis
not of epidemic or public health, but of unmet needs
and of human rights.
- And that goes to my very question, and maybe you can
address this somebody. Tell me the kind of services
that are lacking that you would like to see provided.
Again, so that we can try to figure out how we can use
our dollars effectively and efficiently to not only
I think it was your Mr. Carly who said,
yeah we got to look at the future, we got to do our research,
somebody said this, but we've got to also make sure that
we deal with the now.