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Federal Document Clearing House
Congressional Testimony
April 6, 2000, Thursday
SECTION: CAPITOL HILL HEARING TESTIMONY
LENGTH: 2787 words
HEADLINE:
TESTIMONY April 06, 2000 CATHY PRATT DIRECTOR INDIANA RESOURCE CENTER FOR AUTISM
HOUSE GOVERNMENT REFORM AUTISM COST CHALLENGES
BODY:
April 6, 2000 Dr. Cathy Pratt Director
Indiana Resource Center for Autism Indiana Institute on Disability and Community
Indiana University The University Affiliated Program of Indiana Autism Society
of America Board of Directors Mr. Chairman, Thank you for the opportunity to
present testimony concerning Autism Treatment Options and Research. I am here
today as director of the Indiana Resource Center for Autism located at Indiana
University's Indiana Institute on Disability and Community and as a member of
the Board of Directors of the Autism Society of America. I would like to begin
by commending this Committee for directing its energies toward today's hearings.
For too long, individuals with autism spectrum disorders have not had their
voices heard. While I have the attention of the Members of the Committee, let me
urge you to do two things that will help. First, please send a letter to your
colleagues at the Appropriations Subcommittee that funds the Centers for Disease
Prevention and Control (CDC). Ask them to provide the proposed finding to expand
the CDC's work in gathering national data on the prevalence of autism. Second,
join 41 of your Colleagues in co- sponsoring H.R. 3301, an omnibus children's
health bill that provides clear direction to the CDC and the National Institutes
of Health for speeding up the research and public education in autism. The
increasing incidence of autism has generated a renewed and much needed focus on
autism spectrum disorders. As the incidence increases, research into both the
causes and effective treatment options becomes paramount. Across the United
States, families are struggling with the many challenges presented by a family
member with autism and the systems which are needed to support him/her. Below
are a few comments which reflect major issues often heard. These major issues
include, research into potential causes, early intervention, insurance
coverage/funding mechanisms, adult options, and trained professionals, Research
into Potential Causes. Autism is referred to as a spectrum disorder to highlight
the differences among a population who share a common diagnostic label. Just as
these individuals differ in their characteristics, so may they differ in the
causes of their autism. It seems clear that autism is a genetic disorder.
Children are born with a genetic predisposition for developing the
characteristics of autism. At some point prior to, during or after the birth
process, something occurs that triggers autism to occur. Potential triggers
include environmental factors, illness, complications during the birth process,
or factors related to diminished immune systems. One of the triggers that is
being considered and discussed by families is the measles-mumps-rubella (MMR)
vaccination. While this is not a statement in support of eliminating
vaccinations, it is a plea for examining this potential relationship and for
developing ways in which to more safely vaccinate children. The hope in
examining potential causes is two-fold. First, the idea is that if the cause can
be found, a cure will soon follow. While finding a cure may be in the distant
future, research into potential causes can have a more immediate impact. If
causes are found, such as the MMR vaccination, that can be dealt with
immediately, we may be able to prevent numerous families and children from being
affected by autism. However, I encourage the committee to support research which
will look broadly at potential causes. At the same, time, I would like to speak
to the federal framework of support for those 500,000 individuals currently
diagnosed with autism spectrum disorders and their families. These individuals
and their families can benefit dramatically from early intervention, special
education, and adult services. Yet, there are many barriers to their ability to
secure such supports. Early Intervention. The National Academies of Science and
the National Institute on Health are to be applauded for their efforts in
examining the status of research related to educating young children with autism
spectrum disorders. While there is generally professional agreement regarding
essential features of intervention for children with autism spectrum disorders,
there is less agreement regarding the "best" specific program. The hope is to be
able to identify treatment approaches which will have the greatest long term
impact and which are responsive to the core deficits of autism spectrum
disorders. Based on testimony provided by leading professionals to the National
Academies of Science, it is clear that additional research is needed to
determine critical features of programs. Full Funding for IDEA and Professional
Development Efforts. In a recent report, it was noted that 44 out of 50 states
are not in compliance with the "free and appropriate education" mandate of the
Individuals with Disabilities Education Act (IDEA). While the
reasons for this situation may differ in each state, we do know that states need
financial support when mandated to provide services. While IDEA authorizes
funding for personnel development, the funding allocated is not sufficient to
meet the need. As the incidence of autism grows, we are encountering a stark gap
between the demand for trained personnel and the availability of teachers and
medical professionals who have had training in how to identify and respond to
individuals with autism. In some cases, professionals with little or no training
are taking primary responsibility for the education of children who challenge
the most trained professional. Across the country, families cry out for training
of pediatricians and other medical personnel. Physicians are often the first
source of information for families whose children are newly diagnosed. They have
a tremendous responsibility for starting parents on the right track. In order to
do so, physicians must have more and better information related to diagnosis and
treatment. Insurance Coverage/Funding Sources. When faced with the high cost of
interventions, therapies, medications and other necessary support services,
families look to state and local agencies for financial resources, and/or to
their insurance companies. Often times individuals with autism spectrum
disorders are not eligible for insurance coverage. For example, one individual
was ineligible for insurance coverage for an appendectomy because autism was
considered a pre-existing condition. In other words, even though a physical
illness is completely unrelated to autism or its behavioral manifestations,
sometimes individuals with autism are denied coverage. This policy is based on a
very distorted understanding of what autism spectrum disorders are and how they
affect a person's physical health. When faced with the high costs of medical
care, therapies, medications, and other treatment approaches and interventions,
many find themselves mortgaging their homes to ensure that their child has the
best possible care. The financial and emotional toll on the entire family is
enormous. Families then turn to other state and local agencies for financial
support. These resources are scarce, and in some states non- existent. Families
are told that they have a window of opportunity in which to intervene with their
child. When resources and services are not available during this critical time
period, families are willing to risk financial devastation. The end result is
tremendous stress on their marriages, and intense levels of personal stress in
coping with their child's autism. And again, this impact is felt by the entire
family, including siblings and grandparents. Employment and Supported Living.
Today, a high percentage of individuals across the autism spectrum remain
unemployed. When employed, they are often either under employed or in jobs which
do not match their talents. Some of our most talented individuals face a life of
poverty. For others, living options which allow them to reside in their
community and receive needed support is only a dream. While progress has been
made in this arena, much is still left to do. Conclusion While I commend the
Committee for taking this opportunity to listen to families today, I also urge
you to support authorizing legislation and appropriations provisions that would
further the state of autism research. Support Congressional efforts to my fund
IDEA, providing the supports and services that students with autism need,
including adequate training for education personnel. We need better training for
medical professionals, more opportunities for employment and supported living,
and access to health care coverage. While much progress has been made, there is
still much to do.
LOAD-DATE: April 21, 2000, Friday