[House Hearing, 108 Congress]
[From the U.S. Government Publishing Office]





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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                     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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