<DOC>
[108th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:92727.wais]
THE FUTURE CHALLENGES OF AUTISM: A SURVEY OF THE ONGOING INITIATIVES IN
THE FEDERAL GOVERNMENT TO ADDRESS THE EPIDEMIC
=======================================================================
HEARING
before the
SUBCOMMITTEE ON HUMAN RIGHTS AND WELLNESS
of the
COMMITTEE ON
GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTH CONGRESS
FIRST SESSION
__________
NOVEMBER 20, 2003
__________
Serial No. 108-125
__________
Printed for the use of the Committee on Government Reform
Available via the World Wide Web: http://www.gpo.gov/congress/house
http://www.house.gov/reform
______
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WASHINGTON : 2003
____________________________________________________________________________
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COMMITTEE ON GOVERNMENT REFORM
TOM DAVIS, Virginia, Chairman
DAN BURTON, Indiana HENRY A. WAXMAN, California
CHRISTOPHER SHAYS, Connecticut TOM LANTOS, California
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York
JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania
MARK E. SOUDER, Indiana CAROLYN B. MALONEY, New York
STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland
DOUG OSE, California DENNIS J. KUCINICH, Ohio
RON LEWIS, Kentucky DANNY K. DAVIS, Illinois
JO ANN DAVIS, Virginia JOHN F. TIERNEY, Massachusetts
TODD RUSSELL PLATTS, Pennsylvania WM. LACY CLAY, Missouri
CHRIS CANNON, Utah DIANE E. WATSON, California
ADAM H. PUTNAM, Florida STEPHEN F. LYNCH, Massachusetts
EDWARD L. SCHROCK, Virginia CHRIS VAN HOLLEN, Maryland
JOHN J. DUNCAN, Jr., Tennessee LINDA T. SANCHEZ, California
JOHN SULLIVAN, Oklahoma C.A. ``DUTCH'' RUPPERSBERGER,
NATHAN DEAL, Georgia Maryland
CANDICE S. MILLER, Michigan ELEANOR HOLMES NORTON, District of
TIM MURPHY, Pennsylvania Columbia
MICHAEL R. TURNER, Ohio JIM COOPER, Tennessee
JOHN R. CARTER, Texas CHRIS BELL, Texas
WILLIAM J. JANKLOW, South Dakota ------
MARSHA BLACKBURN, Tennessee BERNARD SANDERS, Vermont
(Independent)
Peter Sirh, Staff Director
Melissa Wojciak, Deputy Staff Director
Rob Borden, Parliamentarian
Teresa Austin, Chief Clerk
Philip M. Schiliro, Minority Staff Director
Subcommittee on Human Rights and Wellness
DAN BURTON, Indiana, Chairman
CHRIS CANNON, Utah DIANE E. WATSON, California
CHRISTOPHER SHAYS, Connecticut BERNARD SANDERS, Vermont
ILEANA ROS-LEHTINEN, Florida (Independent)
ELIJAH E. CUMMINGS, Maryland
Ex Officio
TOM DAVIS, Virginia HENRY A. WAXMAN, California
Mark Walker, Chief of Staff
Mindi Walker, Professional Staff Member
Danielle Perraut, Clerk
Richard Butcher, Minority Counsel
C O N T E N T S
----------
Page
Hearing held on November 20, 2003................................ 1
Statement of:
Schwartz, Ilene, Director, Center for Training Personnel to
Provide Evidence-Based Educational Services to Students
with Autism Spectrum Disorders, representing U.S.
Department of Education Initiatives; Rick Rollens, co-
founder, MIND Institute, University of California Davis;
Dr. Stephen Edelson, director, Edelson Center for
Environmental and Preventative Medicine; and Colleen
Pettinati, mother of two autistic children................. 26
van Dyck, Dr. Peter, Associate Administrator, Office of
Maternal and Child Health Bureau, Health Resources and
Services Administration, U.S. Department of Health and
Human Services............................................. 8
Letters, statements, etc., submitted for the record by:
Burton, Hon. Dan, a Representative in Congress from the State
of Indiana, prepared statement of.......................... 4
Schwartz, Ilene, Director, Center for Training Personnel to
Provide Evidence-Based Educational Services to Students
with Autism Spectrum Disorders, representing U.S.
Department of Education Initiatives, prepared statement of. 29
van Dyck, Dr. Peter, Associate Administrator, Office of
Maternal and Child Health Bureau, Health Resources and
Services Administration, prepared statement of............. 12
Watson, Hon. Diane E., a Representative in Congress from the
State of California, prepared statement of................. 50
THE FUTURE CHALLENGES OF AUTISM: A SURVEY OF THE ONGOING INITIATIVES IN
THE FEDERAL GOVERNMENT TO ADDRESS THE EPIDEMIC
----------
THURSDAY, NOVEMBER 20, 2003
House of Representatives,
Subcommittee on Human Rights and Wellness,
Committee on Government Reform,
Washington, DC.
The subcommittee met, pursuant to notice, at 2:35 p.m., in
room 2154, Rayburn House Office Building, Hon. Dan Burton
(chairman of the subcommittee) presiding.
Present: Representative Burton.
Staff present: Mark Walker, chief of staff; Mindi Walker
and Brian Fauls, professional staff members; Nick Mutton, press
secretary; Danielle Perraut, clerk; Richard Butcher, minority
counsel; and Jean Gosa, minority assistant clerk.
Mr. Burton. Good afternoon. A quorum being present, the
Subcommittee on Human Rights and Wellness will come to order.
And I ask unanimous consent that all Members' and
witnesses' written and opening statements be included in the
record. And without objection, so ordered.
I ask unanimous consent that all articles, exhibits and
extraneous or tabular material be included in the record.
Without objection, so ordered.
In the event that other Members attend the hearing, I ask
unanimous consent that they be permitted to serve as members of
the subcommittee for today's hearing. Without objection, so
ordered.
The subcommittee is convening today to further examine
increases in the occurrences of autism in the United States and
to discuss the ways in which the Federal Government is
providing services and financial assistance to autistic
individuals and their families, and to learn more about their
plans to deal with this growing epidemic in the future.
I was very pleased yesterday that we had the first autism
conference. A lot of the information that Dr. Weldon and I and
others gave to the conference I hope will be taken to heart by
the scientists who are working on this issue. Hopefully we will
be able to get some things accomplished that we have been
working on for a long time.
And I think Secretary Thompson should be congratulated, as
well as the President, for finally beginning to move on this.
About 15 years ago, autism was considered a rare disease,
affecting about 1 in 10,000 children. Now, it is about 1 in 150
to 200. It is the third most common developmental disability
that children face, even more prevalent than things such as
Down's Syndrome and other childhood cancers.
According to a study released earlier this year by the
California Department of Developmental Services, it was
reported that the number of cases of autism in that State more
than doubled since 1998 to December 2002. It went from about
10,000 to over 20,000. This explosive rate in the growth in
autism in not merely being observed in California, but
throughout the country.
Today it is reported that there is more than 1\1/2\ million
individuals in this Nation that are afflicted with autism, and
that the incident rates of these disorders continue to
increase. They estimate that in the not too distant future we
can see 4 million children affected. And the long-term
ramifications of that from a cost standpoint is unbelievable,
and our taxpayers will have to pay for that.
That is why I initiated an in-depth investigation into the
autism epidemic over 4 years ago when I was chairman of the
full committee. That initial investigation led to several
committee hearings, bipartisan legislative proposals, and
educational congressional briefings on autism for Members and
their staffs.
In addition, various Federal agencies in the United States
have also rightfully begun to acknowledge the present and
future public health implications of the autism epidemic, and
they are currently conducting and funding research into the
causation and frequency of these disorders.
In an effort to better coordinate the efforts of the U.S.
health agencies in response to autism, the Children's Health
Act of 2000 established an Interagency Autism Coordinating
Committee. The committee's primary mission is to facilitate the
efficient and effective exchange of information on autism
activities among the member agencies and to better coordinate
their autism-related programs and initiatives.
Today, approximately $10 billion a year is spent on these
Federal projects relating to autism, including research,
training for the teachers of the autistic individuals, and
financial assistance to help families with the great financial
burdens associated with caring for family members afflicted
with an autism spectrum disorder.
If the upward trends of autism continue, the budgetary
impact could increase 40 times to over $400 billion per year by
the year 2013, and that is something we can't let happen if it
is at all possible.
Today the subcommittee has the privilege of hearing from
the Honorable Peter van Dyck, the Associate Administrator from
the Office of Health Resources and Services Administration at
the U.S. Department of Health and Human Services, who is going
to be testifying on the current programs and financial
assistance that his office is providing to help families with
autistic individuals.
I would also like to know, Mr. van Dyck, if you need more,
how much more you need in order to do what has to be done, and
we will see if we can't take your recommendations to the
appropriations committee to get the money you need, because we
want to make sure that we get to the bottom of this as quickly
as possible.
In 2001, President Bush signed or pledged to leave no child
behind, promising that every child in American should have the
opportunity to receive a first-rate education. In an effort to
fulfill his promise, the U.S. Department of Education is
currently testing programs that would help to better train
teachers who educate children with autism.
Ms. Ilene Schwartz, Director of the Training Center to
Provide Evidence-based Educational Services to Students with
Autism Spectrum Disorders, is here today to explain these
exciting new educational initiatives.
In addition to these Federal initiatives in response to the
autism epidemic, there are several nongovernmental and private
institutions providing treatments that have been shown to
improve the health and well being of autistic children.
Mr. Rick Rollens, co-founder of the MIND Institute at the
University of California Davis, and Dr. Stephen Edelson,
director of the Edelson Center for Environmental and
Preventative Medicine, are going to testify before the
subcommittee today to explain the therapies that their
institutions have found to be of great usefulness in helping
children with autism.
I firmly believe that if we do not take immediate steps to
reverse the ever-increasing trend of growth in autism cases, we
are going to be passing on a tremendous burden of
responsibility in caring and providing for the autistic
community to the future generations of America, and that is
simply not acceptable.
It is my sincere hope that the Federal Government and
independent researchers will find new and exciting ways to work
together to once and for all find the root cause of the autism
spectrum disorders, and to prevent this epidemic from harming
more children.
There are two things that we really need to work on, and
those who are here today I know are concerned as well about
these issues. So I would like to mention those to you. We need
to make sure that the program that is supposed to fund special
education for children needs to be fully funded.
Right now we fund it at about 20 percent. We are supposed
to be funding that at the Federal level of 40 percent. So I
think we ought to contact all of our Representatives and
Senators and tell them that needs to be increased, because the
schools around this country, and I have experienced this with
my grandson, the schools around this country are really
strapped for cash as far as special ed teachers are concerned.
And so we need to try to get more money into that fund so that
the States, when they get the money, can filter it down to the
local schools and communities, the moneys that are necessary to
do that.
And like a lot of my colleagues, I forgot what my second
is, but I will think of it during the meeting.
[The prepared statement of Hon. Dan Burton follows:]
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Mr. Burton. With that, Mr. van Dyck, would you rise so we
can swear you in and we will get started? This is a common
practice.
[Witness sworn.]
Mr. Burton. You are recognized, Mr. van Dyck.
STATEMENT OF DR. PETER VAN DYCK, ASSOCIATE ADMINISTRATOR,
OFFICE OF MATERNAL AND CHILD HEALTH BUREAU, HEALTH RESOURCES
AND SERVICES ADMINISTRATION, U.S. DEPARTMENT OF HEALTH AND
HUMAN SERVICES
Dr. van Dyck. Thank you, Mr. Chairman. Good afternoon, Mr.
Chairman. I am Dr. Peter van Dyck, HRSA's Director of Maternal
and Child Health Bureau. Dr. Duke sends her regrets that she
was unable to appear today due to a prior commitment that she
made before receiving your invitation. Thank you for the
opportunity to talk about our programs for persons with autism
spectrum disorders.
The Maternal and Child Health Bureau is one of five bureaus
within HRSA, and it is charged with promoting and improving the
health of our Nation's mothers and children. Our mission today
is to provide national leadership, and to work in partnership
with States, communities, public-private partners, and families
to strengthen the maternal and child health infrastructure, to
build knowledge and human resources in order to assure
continued improvement in the health, safety and well being of
mothers and children, and this population includes children
with special health care needs, which would include children
with autism, pregnant women, infants, children, adolescents and
women of reproductive age. We also serve fathers as
appropriate.
Title V of the Social Security Act authorizes
appropriations to provide and to promote family centered,
community-based coordinated care for children with special
health care needs, and to facilitate the development of
community-based systems of services for such children and their
families.
By statute, in the Maternal and Child Health Services Block
Grant under Title V, 30 percent of the Federal dollars are
designated to support programs for children with special health
care needs, including those with autism. All States meet this
requirement, and most far exceed the required 30 percent
requirement.
Children with special health care needs include all
children who have or are at increased risk for chronic
physical, developmental, behavioral or emotional conditions,
and who also require health and related services of a type or
amount beyond that required by children generally. This also
includes children with autism.
Estimates are that about 18 million children in the United
States have these special health needs. HRSA is responsible for
developing and implementing a plan to achieve appropriate
community-based service systems for these children with special
needs, including those with autism and their families.
This program is developed around six components. In 2003,
the budget for those six components was approximately $22
million, and I will describe very briefly each of those six
components.
The first, we administer a grant program that supports a
national network of communities dedicated to developing and
improving service integration for young children with special
needs. The program also works with the Federal Interagency
Coordinating Council to identify barriers to coordinated
service delivery for these children and to disseminate
successful strategies for integrated services.
One mechanism for dissemination is a demonstration grant
program, and we currently have four States receiving grants. We
have a national resource center which addressed these multiple
issues related to interagency collaboration, community
recognition, and interprofessional practice.
The second area is partnerships in all aspects of
decisionmaking. We promote family centered care through
collaboration between families and health professionals and
policymakers to improve the quality of life for these special
needs children.
Current grant funding includes support for four family to-
family health information centers, and two national resource
centers on family professional partnerships. The third area is
supporting comprehensive health care through the medical home
concept. This program was developed in partnership with the
American Academy of Pediatrics, and that is to improve access
to appropriate services of routine health care and the
integration of medical services within the community of
services required by these children.
It is a collaborative effort among child health
professionals, children with special health care needs, their
families, to assure universal access to medical homes as well
as support systems for the providers who serve these children.
Currently we have grants in 15 States for medical homes. We
have a national resource center, and we have funded these to
the tune of about $3.6 million. Now, in 19--in 2004, rather, an
additional $1.5 million was planned, of which 300,000 will
support a resource center on service delivery issues specific
to autism, and that will be coming out in 2004 as a competitive
grant.
No. 4, we support access to adequate sources of insurance
and financing for needed services. Increasingly, children with
special health care needs, including those with autism, are
receiving their care in managed care plans. The unique health
problems of these children challenge managed care organizations
to provide the full continuum of medical health and social
services within their cost and utilization constraints.
We seek to address these issues, including the
identification of these children, quality assurance systems,
provider networks, and financing strategies. Currently we fund
six States in grants to improve financing in this kind of a
situation with managed care, two national resource centers, and
they also provide technical assistance to address these unique
issues.
No. 5, we seek to provide early and continuous screening
identification and early intervention. Infants and children
with these high risk conditions must be identified early in
order to help assure that they and their families receive care
and assistance to prevent future morbidity and to promote
optimum development.
Advances in brain research, the Human Genome Project, and
increased effectiveness of early intervention have expanded our
capacity to identify children with special needs and to offer
early intervention. We have current funding of $10 million,
which includes grants to almost all States to receive or to
achieve universal newborn hearing screening, and assure linkage
to a medical home early intervention and family to-family
support.
And, six, we look to assure successful transitions of
children to all aspects of adulthood. Health care services must
not only be delivered in a family centered manner, but they
must prepare individuals to take charge of their own health
care and lead a productive life.
We currently have grants in five States and a national
resource center and provide technical assistance to address
these special issues.
All State Title V programs funded by us at the Federal
level receive funding from HRSA and the Maternal and Child
Health Bureau to address these six components. Now, we also
have a few other areas where we are providing specific
assistance.
HRSA serves on the Interagency Autism Coordinating
Committee, which you mentioned earlier, which meets on a
semiannual basis to enhance coordination and effectiveness of
autism research and service activities across the Federal
Government.
As part of the national training curriculum on medical
homes, the National Center for Medical Home Initiatives has
recently completed a specific module to provide early
developmental and behavioral screening, and this center
receives nearly a million dollars annually to support universal
implementation of the medical home concept for children with
special health care needs.
Last year we awarded a million dollar grant to Geisinger
Health System in Danville, PA, and this is to develop a medical
home model of care and related set of tools that will be used
to improve early detection, access to diagnostic and evaluation
services, and continuity and appropriateness for care for
individuals, specifically with autism and their families.
Educational tools from this grant will be disseminated to
State programs and communities to strengthen and expand
integrated community services of care for children with autism.
We recently, recently being October of this year, hosted an
expert work group meeting for families of children with autism,
and the primary goal of this workshop was to provide us with
information on service needs from the family's perspective and
to discuss with families potential strategies to address the
identified needs.
This information will be shared at the next meeting of the
Interagency Coordinating Committee, and we have two long-
standing programs that are relevant to the training of health
professionals to serve persons with autism and other
developmental disabilities. The Leadership Education and
Neurodevelopmental Disabilities Program [LEND], funds 35
programs in universities across the United States to train
individuals from a wide variety of professional disciplines to
assume leadership roles and to ensure high levels of clinical
competence to improve the health of children who have
developmental, neurodevelopmental or other related disabilities
such as autism and mental retardation.
The interdisciplinary faculty and trainees include
audiologists, dentists, health administrators, nurses,
nutritionists, OTs, PTs, physicians, psychologists, social
workers, special education professionals and speech and
language pathologists. These programs are currently funded at
$18 million a year, and we also fund nine perhaps in
universities of higher education to enhance the behavioral,
psychosocial and developmental aspects of general pediatric
care, and these programs support fellows in behavioral
pediatrics to help in their development for leadership roles as
teachers, researchers and clinicians. And clearly this will aid
in the identification and treatment of children with autism.
We also funded a study addressing autism entitled ``The
Early Detection of Autism: Comparison of Three Screening
Instruments,'' where we are comparing the efficacy of three
different screening instruments to identify children as early
as possible, children and infants as early as possible, for
signs of autism.
And we have the health centers, community health centers
program. Once a child as a primary care patient presents
suspected symptoms of autism, primary care clinicians seek a
specific referral, generally outside the purview of the health
center, but within the community that health center serves.
The primary care clinician may tap any available resource,
such as a community mental health center or other federally
funded program, such as the Children With Special Health Care
Needs Program which I mentioned earlier.
Well, this provides a brief summary of HRSA's activities to
provide assistance to persons with autism. We call upon our
partners, all of us together, to have a common effort to
develop and improve community-based systems of care for
children with special health care needs and their families.
It will take joint efforts of all partners to make a
difference for these children and these families.
Thank you very much for the opportunity to appear before
the committee.
[The prepared statement of Dr. van Dyck follows:]
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Mr. Burton. Thank you, Dr. van Dyck. The two areas I was
talking about before I had a brain lapse was the IDEA program,
so that we get adequate funding to help these children with
special education needs, and the second was a Vaccine Injury
Compensation Fund, which needs to be revised.
That is going to be done legislatively, but it would help a
great deal if we can get our health agencies to get behind that
effort. One of the problems that we have with the Vaccine
Injury Compensation Fund is it was supposed to be
nonadversarial, and I know you can't do anything about this but
I would like for you to carry this back to our health care
agencies, because Henry Waxman, who was my ranking Democrat on
my committee when I was chairman, he and I sponsored a bill
that would have made it easier for parents to have access to
that fund who have had damaged children.
And while it is nice that we have your agencies working
together to help assist these families, the cost is huge. We
have had people lose their homes, mortgage everything they
have, the mental anguish that they go through trying to take
care of their kids and worry about them for the future, because
we are going to grow old and die, and these kids are going to
live to a normal age in most cases. And they are worried about
what is going to happen to them if they haven't had proper
training.
So we need to make sure that the parents of these children
and the kids themselves have access to the Vaccine Injury
Compensation Fund. It has over $3 billion in it now, and they
are paying virtually no claims. We have said to the
pharmaceutical industry that is very concerned about class
action liability suits that we would consider holding them
harmless if they would put more money into the fund to make
sure these parents and these children were taken care of, and
if the fund started to be depleted there could be an excess
charge for each shot added to the shot, to make sure that those
people are taken care of, because children who are damaged, we
believe many of them have been damaged by things such as the
mercury in vaccines, that they should be compensated and taken
care of.
So I hope you will take that back. Ask them to, the leaders
of the health agency over there, to assist Henry Waxman and
myself to get that legislation passed so that we can help these
families who are really suffering right now.
Dr. van Dyck. I will relay that.
Mr. Burton. Thank you very much. And also the IDEA program,
we need to get more money into that. I will do my part here at
the Capitol.
Now, you said that the Health Resources and Services
Administration ensures access to comprehensive health care
through the Medical Home Program. Can you tell me what parents
should do, what they should do to try to have access to that,
and what the--because a lot of those people, they look at the
bureaucracy and say, what the heck do I have to do to get these
kind of benefits? They don't know. So can you give us a rundown
on what the benefits are and what can be done to make sure that
people have access to them.
And, also, just throw in one more thing, if you are getting
adequate funds to fund these programs.
Dr. van Dyck. The Title V block grant program provides
funds to all States by a formula. The Title V Children with
Special Care Needs program, through the Title V block grant,
provides funds to every State health department to, among other
things, provide care for children with special health care
needs.
Mr. Burton. So they would apply through the State health
department?
Dr. van Dyck. So a family would either call their local
health department, their local public health nurse, the State
health department, the State maternal and child agency, and
that agency would put them in touch immediately with the
appropriate program.
Many States contract with locals, local health departments
as well. Many States have clinics in local health departments
for these children, early identification types of clinics. So
that would be the best place for families to call.
We help financially those who are poorest, but we often
coordinate the care through the medical home concept, where we
try to provide referral, comprehensive care, competent care,
culturally competent care, coordinated care for families. Even
thought we may not be able to help them pay for this specific
health care, we may be able to help them find their way through
the morass of services that are so necessary.
Mr. Burton. How much money is appropriated to block grants
to the States for this?
Dr. van Dyck. The block grant to States program is at $730
million. States must match the money 3 State dollars for every
4 Federal, and most States actually provide more than that. Of
the money going to States almost--when it is combined with the
State dollars, almost half of it is for children with special
health care needs. They feel that is such an important area.
Mr. Burton. Do you have this information posted on your
Internet Web sites?
Dr. van Dyck. Yes, we do.
Mr. Burton. I wish that we could get it out to these
various parent groups that have autistic children and children
with special needs, because a lot of people have contacted us,
and they don't know where to turn.
Now, in Indiana we went to the State legislature, and we
were able to, on a limited basis, we would like for it to be
broader, but on a limited basis get the Medicaid program to
take care of children with autism, because before that it
wasn't considered a health issue, it was considered a mental
issue, and it wasn't covered under Medicaid. We have gotten
that changed in Indiana to a degree.
But I think additional funding is probably going to be
needed, and I don't know that the States can handle all of that
themselves. So one of things we might take a look at is through
our health agencies here in Washington increasing the
appropriation for block grants so there can be more money.
Dr. van Dyck. You mentioned IDEA earlier, getting children
into the early intervention system through the education
process. Kids zero through 3 in many States are served through
our State Title V or MCH block grant. But it is a partnership,
education providing many of the educational services or
educational-related services, but not often a whole range of
health-related services.
And so it really requires a partnership between IDEA
agencies at the State level and the maternal or child health or
State health agency at the local or State level to really
develop a full-fledged program for these children.
Mr. Burton. I understand that. The problem in both areas
are resources. And since I have been involved in this
personally, my daughter at her school, my grandson was having
trouble with speech and some other problems. And so the doctor
that reviewed my grandson's case said, well, he needs 3 days a
week of speech therapy.
Well, we said 2 days would be enough. They said they would
give him half a day, which was totally inadequate and he would
fall further and further and further behind. So more money
needs to be used for that. And the States are pretty strapped
right now like the Federal Government. We need to take a hard
look at how we are allocating resources now.
HHS gets billions and billions of dollars. I don't know how
much. Does anybody know how much they get a year? But it is a
lot. I just wish whoever is in the appropriating process over
there at that agency, after you get the appropriation from
Congress, would take a hard look at the developmental
disorders, including autism, that these kids are having to go
through and see if we can't increase that block money that is
going to the States to help with that.
And then the IDEA program we will have to take care of here
through direct appropriations. Let's see what else I have here.
Now, the Federal Government grants funds to the State
health agencies to disburse Medicaid waivers and autism
waivers. Is your agency charged with managing those funds?
Dr. van Dyck. No, sir.
Mr. Burton. You are not. Well, you say on your Web site
that--for these grants and these benefits that your Web site
will--you tell them where to go.
Dr. van Dyck. The HRSA Web site, which is www.hrsa.gov, can
point to the MCH, Maternal and Child Health Bureau Web site, or
www.mchb.hrsa.gov will get the Maternal and Child Health Web
site. For example, I can look up that Web site and see that
Indiana receives about $12 million for the block grant, puts in
another $13 million of State money, for a total of about $25
million for maternal and child health services, spending about
half of that on children with special health care needs. And
there will be the person to call in Indiana who would help know
about the program, where parents could call and sign up. So
that person's name would be on the Web site.
Mr. Burton. But nationwide, how much money do you say that
they are block granting out?
Dr. van Dyck. Nationwide, the maternal and child health
block grant is $730 million. About $600 million of that goes to
the States, divided among them.
Mr. Burton. So the States, they have to match that with
about what, $700 or $800 million?
Dr. van Dyck. They have to match 3 State for every 4
Federal. So for $600 million they would have to match about
$450 million.
Mr. Burton. So we would be up about a billion.
Dr. van Dyck. But they overmatch that. This total program
represents about $4 billion of services when the State money is
added in.
Mr. Burton. That is--with all of the problems there are,
that is still----
Dr. van Dyck. That is quite wonderful.
Mr. Burton. Is it adequate to handle the needs?
Dr. van Dyck. I would hate to sit before you with
increasing needs and State budgets declining that we don't feel
an increased pressure of services, for service provision, from
our Federal dollars.
Mr. Burton. Could you do me a favor and provide for the
subcommittee any information that your agency has on their cost
projections? Because although that is taken out of HHS money,
you know, if we know here in the Congress what the projected
need is going to be we can talk to the HHS leaders as well as
the members of the Appropriations Committee here in Congress to
see if we can't make sure there is not a shortfall.
Because these parents, especially parents of autistic kids
are really taking it in the head when they talk about medical
expenses, expenses that--all kinds of expenses that they have
to incur to deal with these kids.
People who haven't received the grants, how do you help
them have access and get those grants?
Dr. van Dyck. HRSA publishes each year a document called
the Preview. It is already published. It is on HRSA's Web site,
and it lists every grant competition coming up for this fiscal
year.
Mr. Burton. What I would like to do, can we tap into their
Web site and put it into our Web site so people who want to
contact--I would like to do that. I would like to cross-
pollinate our Web sites so that people who are--they know that
I am very interested in the autism issue, so that they can get
ahold of my Web site and access this information. Did we get
that Web site address again?
Dr. van Dyck. Www.hrsa.gov. HRSA is one of the few agencies
that publishes for the entire year the full compliment of grant
competitions for that year.
Mr. Burton. So OK. So we can get that on there and
interested parties can find it, not only from your Web site but
from ours as well.
Mr. Burton. Dr. van Dyck, I appreciate you very much
coming. I hope when you go back to the health agencies you will
tell the people over at HHS I am not the SOB that everybody
thinks that I am all of the time, just once in a while.
Dr. van Dyck. I would never say that, sir.
Mr. Burton. I know you wouldn't say that, but I know that a
lot of those people over there are very concerned. In fact,
some people told me that they don't like to come before our
committee because we are very difficult to deal with. All I can
say is that if we are, it is only because there is a great deal
of concern about these kids. And when you talk to parents, and
my grandchild is doing better. But when you talk to parents who
have kids who are 14 years old, who attack them, and they have
to lock the door between the child and them, so that they don't
get hurt, and the house is being destroyed, they are running
out of money, they don't have money for expenses let alone
taking care of the child and food on the table, and they wonder
what in the hell is going to happen to my child in the next 4
or 5 years, it is really tragic.
And it is not that our health agencies don't have a heart,
I think that they do. But I think that there needs to be a
realization that we have to look very hard at what the needs
are and provide for those. And I think we have been falling
short a little bit there. And that is why I would like to work
with you at the health agencies to find out what needs to be
done, and what we need to do in Congress to get it done.
And if the health agencies need to reevaluate how much
money they are putting into, say, you know, developmental
disorders in general, autism in particular, maybe we can talk
to them and work with them to get more money put into that so
parents can deal with that better.
Dr. van Dyck. Thank you very much. We look forward to
working with you. I should say that the families and children
with special health care needs in the country are lucky to have
such a committed person advocating for them.
Mr. Burton. Well, I wish you would call my kids and tell
them that, because they don't appreciate me all that much.
Thank you very much. I appreciate that very much.
Our next panel is my good friend, Mr. Rick Rollens, co-
founder of the MIND Institute at the University of California
Davis, and Dr. Steven Edelson, who is the director of the
Edelson Center for Environmental and Preventative Medicine, and
Ms. Colleen Pettinati. She is the mother of two autistic
children.
Would you all come forward and we will get you sworn in and
get started on this.
[Witnesses sworn.]
Mr. Burton. Let's start with you, Ms. Schwartz. And if you
could, we are going to have more votes on the floor, if you can
try to confine your comments to about 5 minutes, we would
appreciate that.
STATEMENTS OF ILENE SCHWARTZ, DIRECTOR, CENTER FOR TRAINING
PERSONNEL TO PROVIDE EVIDENCE-BASED EDUCATIONAL SERVICES TO
STUDENTS WITH AUTISM SPECTRUM DISORDERS, REPRESENTING U.S.
DEPARTMENT OF EDUCATION INITIATIVES; RICK ROLLENS, CO-FOUNDER,
MIND INSTITUTE, UNIVERSITY OF CALIFORNIA DAVIS; DR. STEPHEN
EDELSON, DIRECTOR, EDELSON CENTER FOR ENVIRONMENTAL AND
PREVENTATIVE MEDICINE; AND COLLEEN PETTINATI, MOTHER OF TWO
AUTISTIC CHILDREN
Ms. Schwartz. Absolutely. Good afternoon, Mr. Chairman, and
thank you for inviting me to come talk to you. I am a professor
of education at the University of Washington in Seattle. At the
University of Washington I prepare professionals to work with
very young children with disabilities, including children with
autism. I am also a faculty advisor to the Experimental
Education Unit, a comprehensive early childhood program for
children with and without disabilities at the University of
Washington.
In addition, and the reason I was invited here this
afternoon, I am the principal investigator of OSEP-funded
projects that are targeted toward developing, evaluating, and
disseminating evidence-based strategies for educating children
with autism.
I would like to tell you about two of these projects.
First, Project DATA is a school-based preschool program for
children with autism and their families. Due to our OSEP grant,
these services are provided to children and families at no cost
to parents.
Initially funded by OSEP in 1997, this program is now
supported by local public schools and private donations.
Children who participate in our program have all made
tremendous gains across all developmental domains. Our first
sample of toddlers, children who started our program under the
age of 2, are wonderful examples.
After 1 year of intervention, 6 of the 8 children tested in
the normal range of development across all domains. At this
point, 48 children have completed our program, and 58 percent
of these children leave our program and enter inclusive
elementary school programs. The families who participate in our
program are among our strongest and loudest advocates. Parents
are pleased and school districts are pleased.
We have over 100 visitors to the program every year. We
have trained early childhood providers, teachers and family
members across our State and over 20 other States. Although we
are proud of these outcomes, we are concerned when we look at
what happens to children when they leave our program and make
the transition to elementary school. Although, as I said, 58
percent of our graduates enter inclusive classrooms only 4
years later, only 25 percent of our graduates are still
attending elementary school next to their typically developing
peers. Most of these children are not successful in general
education classrooms, not because of their academic behaviors.
Many of these children who are not successful have reading and
math skills at or above grade level. Although these children
have achieved standards academically, they are suffering
behaviorally and socially.
Many of these children do not have friends, rarely make
initiations to peers, and often do not respond to the
initiations by their peers. Occasionally these children
demonstrate behaviors that their teachers consider challenging,
but rarely are the appropriate levels of support in place for
them.
Although we know quite a bit about what constitutes a high
quality effective preschool program for children with autism,
we know relatively little about what services should look like
for these children as they get older. The challenges of
elementary school, middle school and high school and adult life
must by addressed by evidence-based instructional programs.
Research is needed to determine what elements must be
contained in these programs. Although we know quite a bit about
effective programming for children with autism, there is still
a huge gap between what is state-of-the-art and what is state
of practice; that is, what most children and families face when
they enroll their child with autism in their local school
district.
To attempt to address this inequity, the Department of
Education funded a national training center, which was awarded
to the University of Washington. Our center, the Professional
Development in Autism Center, has partners across the country
at five partner sites. At this point we have been in existence
for 10 months and we have already provided training to 47
educational teams from 14 States.
In summary, over 500 teachers, parents, and other
interested providers have participated in our activities. To
give you an idea of what those activities are like I will tell
you in this training we provide to educational teams is
individualized, intensive and hands-on. What we know about
training educators is somewhat similar to teaching children. We
cannot just lecture on best practice and expect people to go
home and change their behavior.
Teachers need to see best practice in action, practice
implementing these strategies with support, and they need
followup support and consultation. For example, this week a
team of educators from Mew Mexico are at the University of
Washington for training. From before their visit, an educator
from the University of Washington visited them in their
classrooms to help begin the training process with a needs
assessment.
This week the staff from New Mexico will spend 40 hours
with the trainers at the Experimental Education Unit. Part of
this time will be lecture, part observing children in a model
program, part will be working with children directly with close
supervision, and part discussing what they are learning and how
they will be able to apply it in their own setting.
Then, sometime in January the staff member from UW will
travel to New Mexico again, to help the team with
implementation issues and conduct a post-assessment to evaluate
the effect of the training. The team members will have access
to a problem-solving Web site and phone calls with the training
team. All of these services are paid for by the OSEP training
center.
You might ask why this level of training and support is
necessary. First, as you know, children with autism present a
great challenge for public schools. Given their triad of
disabilities in communication, social interaction and a
restricted or repetitive set of behaviors, children with autism
present a diverse profile of abilities that range from children
who read well above their grade level to those who are
nonverbal.
Next, the environments in many elementary schools and the
curriculum used in these settings are not well suited to the
needs of children with autism.
Finally, if we are ever going to achieve the dream of
leaving no child behind, we need to ensure that all children
with autism have access to free, appropriate public education
that utilizes evidence-based instructional strategies. These
strategies are complex to use and costly to implement. To
respond adequately to the autism epidemic, we need to make
access to high quality services for those children already
identified simple and seamless.
High quality training for educational professionals is an
important first step. Thank you.
[The prepared statement of Ms. Schwartz follows:]
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Mr. Burton. Thank you, Ms. Schwartz. I will have some
questions for you on cost and other things in a moment.
Dr. Edelson.
Dr. Edelson. Good afternoon, ladies and gentlemen of the
Committee on Human Rights and Wellness. My name is Stephen
Edelson. I want to thank Congressman Dan Burton and Mindi
Walker for making this happen. It is quite an honor to be asked
to enlighten this esteemed group about my work over the last 9
years dealing with the biology of the autistic spectrum of
disorders and its clinical management.
My training in environmental medicine has allowed me to
study the molecular basis of disease, including applied
immunology and toxicology, clinical biochemistry and free
radical medicine. These disciplines are key to understanding
and unraveling the biology and the basis for the ASD.
During the last decade, there has been a steady increase in
the incidence of these developmentally delayed syndromes called
the autistic spectrum.
The numbers have gone from 1 in 10,000 to approximately 1
in 250, and this may be underreported. During the same decade,
I began to search for the biological aberration that has led to
this occurrence. I developed an interest in 1994, after hearing
a thought from someone in the autistic community, ``all
autistics have food allergies.''
Being environmentally trained, my mind wondered about how
this epidemic could have begun. And in these cases the brain
and the immune system seemed to be involved. And how could that
be affected 100 percent of the time?
There it is. Only one reason could relate to this, a toxic
injury of some sort. I began the investigation to find common
threads of the autistic spectrum in 1994 with the study of 30
children in the Atlanta area. The findings in this group
manifested combinations of abnormal processes that were found
in 100 percent of the children and many other findings of
abnormal function in between 25 and 75 percent of the group.
The three most common characteristics, and found as the
roots of the spectrum, were a genetic abnormality and liver
detoxification, heavy metal burdens with lead, tin, nickel and
mercury, and toxic chemical burdens with pesticides and
petrochemicals.
In addition, the following were also pieces of the puzzle;
70 percent of the children maldigested; 30 to 40 percent had
malabsorption syndrome; 50 percent of the children had an
autoimmune encephalopathy, their immune systems were attacking
their brains; 100 percent had food allergies and activated
immune systems; 75 percent had damaged intestional linkages
called a leaky gut; 100 percent of the children had significant
nutritional deficiencies, and approximately 65 percent had
massive free radical stress, which is oxidative injury.
Although this studying of these children was done without
aged-matched controls, the numbers of children, approximately
150, and the laboratory's reference ranges allow us to
speculate that these are the roots of the autistic spectrum.
And we leave it to the researchers at the universities to do
more detailed scientific work to prove the hypothesis.
I am a clinician, not a researcher. I take care of autistic
children and get them well. It is of great importance to
mention that not only do we have the large numbers and the
reference ranges, but we have shown over the years that by
reversing the abnormal biology of these children, they improve
dramatically, between 60 and 100 percent, depending on the age
when the treatment is begun, the aggressiveness of the therapy
and the commitment of the parents to doing the work necessary.
The therapies that I am talking about include heavy metal
detoxification using chelation, chemical detoxification using
sonar depuration therapy, nutritional therapies, dietary
therapies, and at times gamma globulin therapies.
Over the last 9 years, we have published several studies in
peer review journals, lectured about the subject in several
organizations, and in April 2003 released my book, Conquering
Autism, to the public. The message of my 9-year journey in
developing theories and innovative therapies for this illness
are all contained in these pages.
I am hoping that the message I have offered to the public
and now to our government will open the eyes to the real
culprit in this illness, the poisoning of the world, and so
affecting first the must vulnerable of humans, the fetus and
the newborn. We all know that this illness is costing our
economy billions, and ruining the lives of families and
preventing the maturing of a segment of our population.
There is a light at the of the tunnel, and I have made it
possible for parents to attain great changes in the lives of
their autistic children. We need this type of innovative work
to be available to the masses that currently either don't know
it exists or cannot afford to do the work needed to help their
children get well.
We ask of this fine body of lawmakers to allow this
nontraditional science to be available to all that would like
to use it. It is up to all of us to do everything possible to
improve the functional life of all of our children.
Mr. Burton. Thank you.
Ms. Pettinati.
Ms. Pettinati. Good afternoon, ladies and gentleman of the
committee. My name is Colleen Pettinati. I would first like to
say what an honor and privilege it is to be here.
I have two beautiful children, Michaela, age 9, and
Jonathan, 7 years old. Both of them have been diagnosed with
pervasive developmental disorder, also known as autism.
At 2 months old, Michaela experienced collapse shocked
after receiving six immunization shots in the same day. It was
a frightening experience, one I really didn't understand at the
time. When I brought her back to the pediatrician, he assured
me that she was fine. At least she appeared that way when he
saw her. From that point on, she never seemed to hit her
milestones. Her doctor was not really concerned.
By the time Michaela was 2 years old, I realized she was
not well. She had severe behavioral problems, night terrors,
extreme anxiety, echolalia and no sense of danger. She was also
suffering physically with chronic ear infections, continual
explosive diarrhea and feveral seizures. In my opinion, this is
a little extreme for the terrible twos.
I then began my journey through the band-aid approach of
mainstream medicine. After receiving the long-overdue diagnosis
of autism, it was recommended that Michaela should be put on
Prozac, and when my son was diagnosed at 23 months, it was
recommended that he should be on Ritalin.
Instinctively, I knew this was not the answer, so I dug my
heels in and started my search for answers. I attended
conferences and read books on the biomedical approach to
autism. This made sense to me.
Finally, my research led me to Dr. Edelson of Atlanta, GA.
By this time Michaela was 6 and Jonathan was 4. He addressed
all the areas which I knew in my heart were influencing my
children's poor health and delayed development. Of course, none
of tests or treatments were covered by insurance because they
are not used by mainstream medicine.
It took my husband and I 2 years to figure out a way to get
the money to treat our children. This was the most difficult 2
years of our lives, knowing that there were treatments out
there that could help make our children healthier and we could
not afford them.
We had no choice but to ultimately sell our home in
Massachusetts, leave our family and friends behind and
everything familiar to our children and move to Atlanta. We
knew we had to use the equity from the sale of our home to try
to save our children from this devastating disorder.
The tests revealed exactly what I had suspected and then
some. My children were suffering from heavy metal toxicity,
immune dysfunction, abnormal liver detoxification,
malabsorption, leaky gut, nutritional deficiencies, multiple
food allergies and chemical sensitivities. Worst of all, they
have antibodies against their brains.
After 4 months--I am happy to say that after 4 intensive
months of therapy at the Edelson Center, my son has improved
dramatically. His expressive and receptive language has
blossomed. His eye contact has improved. His physical health is
much better as well. Jonathan is socially interacting with his
peers and keeping up academically. He is in a typical first
grader, with the help of an aide.
My daughter Michaela's improvements have been more subtle.
She requires more treatment.
Our insurance company has paid very little, approximately
$3,000 to date. We still cannot afford all the treatments
necessary to save our children.
To date, my husband and I have spent $50,000 in cash and
have taken out a $30,000 home equity loan that is dwindling
away. We both work full time and have no family nearby to help
us take care of our children. We bet everything we had on a
nontraditional treatment because there was no hope for our
autistic children in the world of mainstream medicine.
I strongly believe that Dr. Edelson's treatment protocol
should become mainstream so every autistic child has a fair
chance of recovery and the financial burden should not be put
on the parents.
In conclusion, the toll of autism socially, mentally,
emotionally, physically and financially is enormous. The lack
of knowledge surrounding this disorder increases our burden to
an almost intolerable level, but we know we must go on and save
our children.
Mr. Burton. Your situation with the six shots in 1 day with
your daughter sounds a great deal like my grandson. He received
nine shots, seven of which did contain mercury, and it was
dramatic. How quickly after she received those shots did you
notice a change?
Ms. Pettinati. It was like 4 hours later.
Mr. Burton. It was very close.
Ms. Pettinati. She went into collapse shock. When I brought
her back to the pediatrician, he said, oh, she is fine. There
is nothing wrong with her. I didn't put two and two together
until probably 4 years ago. I read a book that explains exactly
what she went through. It was collapse shock.
Mr. Burton. Did you get a chance to check to see what was
in those vaccines? Was it thimerosal in there?
Ms. Pettinati. Absolutely.
Mr. Burton. Do you know how many of the six shots contained
thimerosal?
Ms. Pettinati. You know, I really can't tell you offhand.
Mr. Burton. You probably couldn't find that if you went
back.
Ms. Pettinati. DPT, they have hepatitis B. I know those--at
least those three do contain it, and that is what she received
that day.
Mr. Burton. Have you applied to the Vaccine Injury
Compensation Fund?
Ms. Pettinati. I haven't applied to the fund.
Mr. Burton. You probably have missed the window. We are
trying to get that changed so there will be a look-back
provision. The problem is not in the House. It is in the
Senate. We are trying to get them to go along with the
legislation that Congressman Waxman and I sponsored which would
give you people about 18 months to 2 years to file and would
have about a 6-year look-back provision in it so people who
have had damaged children can get into the program and at least
make the application. So we are going to work on that.
You said you're training, Ms. Schwartz, you are training
educators from around the country. How is that funded?
Ms. Schwartz. It is funded through the OCEF training grant.
Mr. Burton. Is there adequate funds there for that
training?
Ms. Schwartz. Well, we could always do more training. I
think that, clearly, we have very generous grant, $1 million a
year for 5 years.
Mr. Burton. That is coming from?
Ms. Schwartz. OCEF. But there are a lot of school districts
in this country, and one of the problems that we have is that
we are really--it is really a drop in the bucket to the amount
of training and technical assistance that needs to be provided.
One of the issues about providing intervention to children
with autism--and they talked about this at the autism summit
yesterday and today and we all know this--is the children are
so diverse in that their behavioral profiles are so different.
So teachers need some ongoing support and consultation on how
to help particular individual children. That kind of
supervision and training is costly.
Mr. Burton. You get into how the teachers can deal with the
behavioral problems as well?
Ms. Schwartz. Absolutely. That is an important part of our
training. In addition to making sure that they have evidence-
based strategies to teach new skills, at the same time they
need to use positive behavior support strategies to make sure
that appropriate behavior is being reinforced and not
inappropriate behavior.
Mr. Burton. There have been cases where children who were
autistic who were making progress as far as their education
have been expelled from school because the teachers can't cope
with them. I am sympathetic to the teachers. It is hard to deal
in this day and age with children who don't have any
disabilities, let alone children who are suffering from things
like autism.
So what we are going to try to do is find out how much
funding your training program needs that you are not receiving.
I wish you would give us that information and then find out
through the IDEA program how much more money we can get for
that from the Federal level so that the States will have more
money to deal with it. But I am still concerned about how you
are going to deal with those behavioral problems.
My grandson is doing a lot better, and I am looking at it
from him because I have seen this firsthand. He is doing
better. But there was a time when he was flapping his arms,
running around, banging his head and hollering at inopportune
times. It is hard for a teacher to cope with that.
How do other teachers deal with it? How do you tell
teachers to deal with that sort of thing?
Ms. Schwartz. Well, first of all, thank you for your
support, but there is a strategy, a way of dealing with
challenge behavior that we call positive behavior support. One
of the things we know about challenging behavior now, whether
it is flapping your hands or hitting someone else, is that
those behaviors serve a function, and we need to know what the
function is.
For some children the function is saying, hey, I need
attention. For other children, it is escape, saying this is too
hard or I don't want to do any more of this. For some children,
it's sensory. For example, the lights in here bother me, or it
is too loud.
One of the things we need to do is identify what that
function is, because we can then help the child achieve that
function in a more appropriate way.
Mr. Burton. How in the world do you teach a teacher all
those things so they know how to recognize it?
Ms. Schwartz. That is one of the things we very much are
struggling with, is the idea that school districts really need
to have someone on staff, given the incidence of autism now,
who is more trained than the average teacher. Because the
reality is we are never going to get the average teacher up to
that level of training. But there are strategies that can be
implemented in the classroom that are not that difficult if you
have frequent, ongoing support from a mentor or a coach to
implement those strategies.
Mr. Burton. What I would like for you to do, if you could
give us in writing your recommendations, maybe we could submit
those.
We have the gentleman from our health agency who is here,
Dr. van Dyck. If we could get those recommendations, maybe
through Dr. van Dyck or other people at the health agencies, we
could pass those on and add that to the mix as far as maybe
getting additional funding to deal with this problem.
There are so many school districts and so many kids who are
suffering from these development difficulties orders, autism
and others, that we really need to have more education on how
to cope with them.
Ms. Schwartz. Absolutely.
Mr. Burton. If you can get that information to us, we will
get it to Dr. van Dyck and have it passed on to some of others
over there.
Ms. Schwartz. Absolutely.
Mr. Burton. Are you familiar with that at all, Dr. van
Dyck?
Dr. van Dyck. Yes.
Mr. Burton. Are health agencies already working on that to
a degree, how to teach teachers to deal with and cope with
these kids?
Dr. van Dyck. Well, I think we leave the teaching of the
teachers to the education agency, but, again, it is this
partnership between--it is an important partnership between
teachers and the health professionals, because they help
interpret this.
Mr. Burton. If we can get this information, we will pass it
on to Dr. van Dyck and others over there and it will be
included in part of the mix.
Dr. Edelson, you said you review the abnormal biology; and
after you do that, you use procedures that are not recognized
by the conventional or regular medical profession. You use such
things as chelation. How do you check out the normal biology or
the abnormal biology of the child?
Dr. Edelson. First, let's talk about heavy metals like
mercury, lead, nickel, etc. We use what we call a challenge,
where we put chelators into the child, depending on the weight
of the child.
Mr. Burton. You do that through the bloodstream?
Dr. Edelson. Yes, we do that IV. We give an IV. Then we
measure the urine output over 12 to 24 hours.
Mr. Burton. Checking for mercury, as well as other heavy
metals?
Dr. Edelson. Oh, yes, we check out all the heavy metals. We
send that to a reputable laboratory that does the work,
measuring micrograms per liter of metal that comes out.
Usually, before we even do the challenge, we do a 24-hour
urine without any challenge to see if anything is coming out or
anything is present without the actual chelator, so you can
compare what it is like before and after a challenge. And you
see a big spike--if the heavy metals are coming out, you see a
big spike after the challenge is given. That way you determine
the total burden of heavy metals in the child, and then you set
up a program that the child gets weekly treatments of chelators
to remove these metals from their body.
Mr. Burton. Well, I think you all were at the conference
yesterday, were you not?
Dr. Edelson. No.
Mr. Burton. You were not there. Well, at the conference
yesterday I showed a tape of a study that was done at the
University of Calgary in Canada that showed what happened to
brain cells when a very small amount of mercury was put in
close proximity to them. Of course, it did destroy them.
If you find out a child has had, say, from mercury, which
they think is one of the major culprits in their body, and they
are suffering from autism, you can chelate that out of their
body. In your experience, what about regeneration of the brain
tissues? I have been told that once that damage is done, you
can't do much about it.
Dr. Edelson. That is not true, at an early age. Absolutely
not. We know that, at least up to 10 or 11, that you can
completely turn around what has happened to brain cells. A
classic example is you can take a 6-year-old, remove half their
brain, within 2 years that child will be perfectly normal. If
you try it on a 15-year-old, you have a totally disabled
individual. The brain cells regenerate. They take time to do
it, but it completely heals.
If Mindi will show that videotape of a child, just a 2-
minute videotape of a child, you will see a child before we
removed the mercury from the body of the child and after. We
will see the behavior of this child.
Mr. Burton. We will do that in just a second.
I would like to ask a question about that. Have you kept
records of all this that you can pass on to our health
agencies? You know, when I talk to our health agencies, there
is a built-in reluctance to believe that chelation, for
instance, and things like you are talking about really do any
good. They always want to do a double-blind study, and that
takes 5 or 10 years. By the time you get through it, a whole
generation of kids have been left behind.
Dr. Edelson. That is the classic. What can I tell you?
Mr. Burton. First of all, how do you get around some of our
health agencies and maybe some of the condemnation that doctors
receive for doing these procedures?
Dr. Edelson. They can condemn me all they like. I am
getting children well, and I am willing to put up with their
condemnation.
Mr. Burton. And you kept records showing the improvement of
these children?
Dr. Edelson. I have records on all of this.
Mr. Burton. How many children have you helped?
Dr. Edelson. Oh, gosh, 100.
Mr. Burton. One hundred. Would you mind sending us any kind
of a medical record history?
Dr. Edelson. I can't do that, according to HEPA laws.
Mr. Burton. See, the problem we have----
Dr. Edelson. I didn't make the laws.
Mr. Burton. I know you didn't. For me to change those laws
is a very cumbersome process, as you might realize. What I am
trying to figure out is how we can take the statistical data,
if not the personal data of these kids, and give it to our
health agencies as some kind of a proof that this stuff works.
Because I believe it does work.
Dr. Edelson. There is no question.
Mr. Burton. I know chelation has helped in other areas as
well with older people as far as their arteries and that sort
of thing. So is there any kind of information you could give us
without divulging the names and records of these people that
would show a child in this age group had this kind of a problem
and a child in this age group after chelation and this sort of
thing had this kind of a behavioral improvement and educational
improvement?
I know it would be difficult for you to do that. But if you
could, if you could send that to us, we could get that to them
and at least show them from your research, working with these
kids, how that has been beneficial. Maybe we could kick them in
the rear end, those who are reluctant to believe this sort of
thing, that maybe they should appropriate or spend some of that
money we are putting over there to check this out.
Dr. Edelson. It won't work, but I will do it for you. I
know by experience that the lack of knowledge in this group
that you are talking about who are going to look at these
results, they are going to be putting it down before they are
going to accept it. They are going to put it down.
Mr. Burton. Let me worry about that.
Dr. Edelson. That is fine.
Mr. Burton. Dr. van Dyck will tell you the general
understanding over there is I am a real bad guy. That is pretty
much it, isn't it?
You don't have to answer that. I will tell you I will be
very aggressive in asking them--very aggressive in asking them
to review your case studies without names or anything so we
don't violate any laws or regulations and ask them to take a
hard look at it. If they won't, I will call them before the
committee and ask them why they won't.
We have all dealt with bureaucracy and sometimes you find a
real diamond up there that says, we ought to take a look at it,
and then you find some of the hardheads and we have to try to
deal with them. Would you get that for us?
Dr. Edelson. Sure I will.
Mr. Burton. Ms. Pettinati, you are Italian--I didn't think
you are Irish with that name--or your husband is Italian.
Ms. Pettinati. I am Irish.
Mr. Burton. But your husband is Italian.
Ms. Pettinati. Yes.
Mr. Burton. Tell me how your children have improved since
they have gone through this treatment with Dr. Edelson.
Ms. Pettinati. They are overall much healthier, not so many
problems as we previously saw. Socially, they have improved. My
son's personality has just--I didn't realize he had such a
great personality.
Mr. Burton. Was this immediate? How long did it take before
you started seeing this?
Ms. Pettinati. For my son, I saw some improvements within a
month.
Mr. Burton. How many treatments did he have in that month?
Ms. Pettinati. The month, eight.
Mr. Burton. Were these all chelation treatments?
Ms. Pettinati. Yes, chelation.
Mr. Burton. Do you do those a couple a week?
Ms. Pettinati. Yes.
Mr. Burton. You saw marked change.
Doctor, when you were chelating, did you note a drop in the
amount of toxic chemicals that were coming out of his body?
Dr. Edelson. We measure the levels after about 3 or 4
months of treatment, because it is an expensive test, so we
don't want to do it prematurely. We don't measure it every
week.
Mr. Burton. You started out, and after you do the original
urinalysis without any chelating in it, you do the chelation
and you can see what it is, and then you test after about 3 or
4 months.
Dr. Edelson. Three or 4 months. We tested again, and you
can see the drop.
Mr. Burton. But in her particular case, her son started
seeing marked change in a month.
Dr. Edelson. Well, it is more than chelation. She didn't
tell you that the child also had about six different therapies
in addition to the chelation.
Mr. Burton. Were those administered by you as well?
Dr. Edelson. Yes. We are not doing a linear protocol here.
It is a multifaceted treatment protocol that deals with all of
the abnormal biology, not just the heavy metals. Remember, I
mentioned that these children have multiple defects.
Mr. Burton. Diet and everything else. I see. Well, your son
is doing better, and your daughter is not doing that well. How
much did you say you spent? $50,000?
Ms. Pettinati. So far, $80,000. But I would do it all over
again.
Mr. Burton. No, no, I understand that. It has put a real
financial burden on you and your husband.
Ms. Pettinati. Absolutely.
Mr. Burton. Well, you are one of a whole host of parents
that have had this kind of a problem. We have been working very
hard to get the Vaccine Injury Compensation Fund opened up so a
Special Master can look at everybody's case and make a decision
that will not be appealed up and up and up like they have been
in the past, so parents can get restitution or some
compensation out of the funds to help defer--not defer--but
help deal with some of these expenses so people don't lose
everything.
I don't think we are going to ever find the whole solution
to the problem of these kids being damaged. What I am trying to
do with this committee is to find out what the cause is. We
have looked at the MMR vaccination, and we have looked at the
mercury in the vaccinations and so forth. The scientists we
have had before the committee from around the world believe
that the mercury is one of the major causes, the MMR shot is
one of the causes, so what we are trying to do is first
identify the problem and then try to find out how to deal with
the problem and, if possible, how to cure the problem. It is a
very cumbersome problem.
I see you shaking your head there. It is not going to be
easy.
Dr. Edelson. It is because I don't believe the MMR is the
cause of autism, and I think there are a number of studies this
have shown it isn't.
Mr. Burton. Look, I am not saying you have to agree with
everything we are talking about here. We have had doctors from
England who say yes and who say no, and all we think the health
agencies ought to do is check it out so we know.
As far as the mercury is concerned, those who have an open
mind, there is a universal belief that is a contributing
factor.
Dr. Edelson. Contributing, but I have had 30 percent of the
children who do not have mercury, who have other metals and
chemicals that are involved in this.
Mr. Burton. Tell me about that.
Dr. Edelson. Absolutely lead is a very, very big metal that
we find in these kids. Tin is also. These both----
Mr. Burton. Aluminum?
Dr. Edelson. They are all neurotoxins. Not too much.
Occasionally, we find aluminum present. It is not one of the
major ones. But the three major neurotoxins are certainly
mercury, lead and tin. We also find a significant amount of
nickel, which is an immune disregulator as well, as is lead and
mercury. So we have the immune system here being damaged as
well as the central nervous system.
Mr. Burton. That is in your book.
Dr. Edelson. The entire 9 years of my work, the three
studies, all the things about the mercury, it is all detailed
in there.
Mr. Burton. Well, I will try to go through this. But if you
could give us--as you might believe, we have a lot of other
issues we are working with up here, like the Medicare
prescription drug benefit and the war in Iraq and a few other
things. What I would like to do is ask you to give us a
synopsis, if possible, condense some of these major issues that
you think we ought to deal with that we can present to our
health agencies so I can go through them more rapidly. I know
it asking a lot, because you have a lot on your plate, too. If
you could get that for us through Mindi and my chief of staff
and the other people, I would really appreciate it.
Dr. Edelson. OK, sir.
Mr. Burton. I see Mr. Rollens has arrived. I hope you gave
a big speech over there that everybody was listening to.
Mr. Rollens. It was presented in the great Dan Burton
style, I must say.
Mr. Burton. I don't know about that. In fact, I am afraid
to ask how you define the great Dan Burton style. Never mind.
Why don't you make a statement, if you want to, Mr.
Rollens? Then we will get back to questioning. I don't want to
hold everybody up too long. Can you confine it to 5 minutes?
Mr. Rollens. Thank you, Mr. Burton, staff, members. It is a
privilege to be here before you.
Mr. Burton. I didn't swear you in. I swore everybody in.
[Witness sworn.]
Mr. Rollens. Mr. Chairman and members, it is a privilege to
be back before you again. I was invited before your committee
back in August 1999 and testified before you about the autism
epidemic in California and the growing concerns about the role
of vaccines in the process of development of autism.
Back in 1999 when I testified under oath, as well, I
reported to this committee that California was adding, on
average, five new children a day, 7 days a week, with
professionally diagnosed, full-syndrome autism.
I wish I had better news to report to you today, Mr.
Chairman. But today, in November 2003, a little over 4 years
since the last time I reported, it is no longer five new
children a day, 7 days a week; it is 11 new children a day, 7
days a week that we are adding to California's developmental
services system. These are all professionally diagnosed cases
and at a cost to taxpayers of over $4 million for a lifetime of
care for each child that we add to California's developmental
services system.
It doesn't take a math wizard to figure out the math, that
in our State we are adding $44 million worth of new children
every day to the cost of care for a lifetime of care for
children with autism. Just in the first 9 months alone this
year, we added enough children with full-syndrome autism to
incur over $1 billion worth of taxpayer liability for the care
of that population--California, one State, 9 months, $1
billion.
The enormity of this problem is beyond comprehension. We
are not only seeing a rapid growth in autism, but we are seeing
the numbers of these children coming in at a rate that has just
literally doubled within the last 4 years.
The numbers I report to you, Mr. Chairman, are documented
in a report by the California Department of Developmental
Services that is available; and I will make copies available to
you and your staff and the other Members showing this rapid
increase just in the last 4 years.
The concern, of course, to State government and Federal
Government is what are we going to do? How are we going to care
for the children that are here today at a cost over a lifetime
of care, just in providing shelter, food and programs for those
people when they become adults and young adolescents?
The age distribution in our State is astounding. We have--
with the other disabilities in California's developmental
services system, which includes things like mental retardation,
cerebral palsy and epilepsy, you can chart out exactly what the
numbers of new cases are in a very predictable way. In fact,
the folks in the Department of Finance budget California's over
$2 billion budget for the developmental services system based
on this very predictable rate of increase.
The autism numbers are just off the chart. Not only are
they off the chart, the age distribution in the population is
so skewed toward young children it is astonishing. When you
look at mental retardation, cerebral palsy and epilepsy, you
can see there is roughly the same number of those people with
those disabilities at age 25 than those age 10 or 15 years old.
But you look at the autism population and you quickly discern
that only 15 percent of our autism population are adults over
the age of 25 years old. Another 15 percent are between the
ages of 15 and 25 years old; and 70 percent, 7 out of 10, are
children between the ages of 3 and 14 years old. This is a
sobering statistic and a real-life crisis as the tsunami of
children reach adolescence and adulthood.
We know one thing about autism for sure, and that is it
affects boys at a rate of at least four to one. The thought of
thousands of autistic males as young adults coming into our
system who need services such as in-home and residential--out-
of-home residential placement and care is an overwhelming
thought.
We know in our State, for instance, the amount of money we
spend on children with autism is, on average, about $5,000 a
year. When those children become adults, it jumps to $30,000 a
year. It is a huge increase. We don't spend--the money in
autism services is not with children, it is with adults. These
are in today's dollars with today's demands. Again, with only
15 percent of our population currently adults, what is going to
happen when these thousands of new cases of growing numbers of
cases of autism reach that level? It is an unbelievable
situation.
Back in 1999, your colleague, Diane Watson, who I had the
privilege of serving with--I was the Secretary of the Senate
for the California Legislature for 24 years, and I refer to her
as Senator Watson because she was in the State Senate and the
Chair of the Health and Human Services Committee for many
years. Senator Watson, now Congresswoman Watson, was the author
of the legislation that created the MIND Institute. So this is
a special day for me, and I hope--I know how busy she is with
votes and all that, but I do plan to stop by and see her. I am
privileged to be before your committee for that reason as well.
In 1999, the MIND Institute was created. It was created by
four fathers of children with autism. We secured through our
efforts over $80 million of funding from the State of
California over those years to create what has become the
largest autism research clinic and education program in the
country, within 3 years.
We had our grand opening of the building, a 150,000 square
foot complex located in Sacramento, and I invite you, Mr.
Chairman, and your committee to please come to Sacramento and
have a hearing and let us explain and show you firsthand the
exciting work we are doing, not only in the traditional autism
research but some very progressive areas of research looking at
things like the role of mercury, the role of MMR vaccine, the
role of other neurotoxic components of vaccines in the
development of autism.
Mr. Burton. Well, let me interrupt you here, because I want
to get to questions. We kept everybody here longer than I
anticipated today.
Has the MIND Institute come to any conclusions about this
tremendous increase in autistic cases out there?
Mr. Rollens. Yes, they have. They absolutely believe the
increase is real.
Mr. Burton. I mean, do they have any causation conclusions?
Mr. Rollens. Not quite yet, but, as they say in the news
business, film at 11. We expect to have some results published
within the next few months on some of these very important
questions.
Mr. Burton. You have doctors and scientists that are
looking into this out there to come up with some conclusions
that they think have some scientific validity?
Mr. Rollens. Absolutely. The MIND Institute is all about
good science research not only in clinical research but in
biomedical research, and the work that is being done is first
class, it is publishable, and it will be published in not only
mainstream medical journals but the best mainstream medical
journals.
Mr. Burton. In addition to the research out there, are they
doing anything like Dr. Edelson is doing as far as using
alternative methods of treatment to help kids?
Mr. Rollens. One of the----
Mr. Burton. Dr. Edelson has used chelation and other
treatments which has been beneficial to a lot of children. What
do they do at the MIND Institute?
Mr. Rollens. One of the dilemmas that we have that we are
addressing by doing good science clinical research is finding
the efficacy of many of these interventions that we as parents
have all tried, and there are many dozens of different
interventions out there in the community, some of which have a
positive effect. I am a living, breathing example of my son's
progress that he has made on many of these types of
interventions, including chelation, I can speak as a parent,
has been helpful.
But the problem we are having, of course, is unless parents
dig deep into their pocket, sometimes into the hundreds of
thousands, $80,000, $60,000 a shot, to go to folks for these
kinds of services--we need insurance companies, we need
regional centers, we need school districts, we need all of the
folks that are responsible for paying for these interventions
to have the science behind the particular intervention in order
to get the funding so parents are not on the hook and in many
cases literally left destitute by having to pay for these
procedures.
Mr. Burton. What we would like to do--and as long as I am
chairman we are going to keep digging into this and trying to
get our health agencies to work with these research facilities
around the country to come up with some positive responses to
it. What we would like to do is--I would like to have your
pamphlet there. If there is any additional information you
could give to us, we would like to have that as well.
Mr. Rollens. In here I do outline and the MIND Institute
outlines all the autism vaccine studies so you can see what is
in progress.
Mr. Burton. What we would like to have from Ms. Schwartz is
your recommendations on expanding the educational programs for
the people in the educational profession so they will know
better how to deal with these kids and what we ought to be
doing as a government to provide the resources to help those
educators to be trained properly.
From you, we need--you know what we need. I know you can't
violate, Dr. Edelson, the rules and regulations and laws
established to protect patient confidentiality. But, as I said
before, if you could give it to us in some kind of form so we
can take a hard look at it; and maybe after that we can get
some of our health agencies to sit down with you and maybe take
a closer look at case studies within the confines of the law.
All I can say to you is I am very sympathetic, Ms.
Pettinati, because we have gone through it, and sitting in the
audience I think are a lot of parents and people who have spent
all that money and toward that end we are going to continue to
try to do something about the Vaccine Injury Compensation
Program. We continue to need everybody's help putting pressure
on Congressmen and Senators to push for some changes in that
program so we can get some money to the parents so they don't
go bankrupt and then they can use that money to help get their
kids better by going to facilities like Dr. Edelson's and
others.
Ms. Watson has requested that her statement be submitted
for the record. She could not make it. We will do that. I will
tell her, Mr. Rollens, that you still love her dearly and you
missed her today.
With that, unless there are any other questions I might
ask, if you could get us that information, we would really
appreciate it. We will not just let it lay around here. We will
use it, I promise you.
Mr. Rollens. Please come to California.
Mr. Burton. I am going to come to California.
Representative Watson and I are going to have a hearing on
amalgams and mercury in California. We will try to make it in
Sacramento if possible so we can go up there and see your
facility and try to get a look at that.
If you folks will get us that information, we will take it
and run with it. Dr. van Dyck, I hope you will carry back to
our health agencies the message that you have heard today; and
we need to continue to work with you to find some solutions.
With that, we stand adjourned.
[Whereupon, at 4:08 p.m., the subcommittee was adjourned.]
[The prepared statement of Hon. Diane E. Watson and
additional information submitted for the hearing record
follow:]
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