[Congressional Record Volume 153, Number 48 (Tuesday, March 20, 2007)]
[Senate]
[Pages S3381-S3383]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. CLINTON (for herself and Mr. Allard):
  S. 937. A bill to improve support and services for individuals with 
autism and their families; to the Committee on Health, Education, 
Labor, and Pensions.
  Mrs. CLINTON. Mr. President, today, I, along with my colleague 
Senator Allard, am proud to introduce the Expanding the Promise for 
Individuals with Autism Act (EPIAA.) This legislation will help to 
increase the availability of treatments, services, and interventions 
for both children and adults with autism.
  Last year, I worked with my colleagues on the HELP Committee to pass 
the Combating Autism Act into law. This important bill will increase 
the amount and type of research we are doing to understand the origins 
of this disease, and help us develop new treatments--and eventually--a 
cure. It will also help to increase the ability of our health 
professionals to screen and diagnose autism as early as possible in 
children, so as to improve our ability to treat this disease.
  But while we are carrying out the research that will lead us to gain 
a better understanding of this disorder, we cannot forget those who are 
and who have been living with this disease today--the families who are 
desperate for assistance and help with a disorder that so often shuts 
off individuals from the world around them.
  The need for this legislation is evident--we continue to see an 
increasing number of individuals with autism. Last month, the Centers 
for Disease Control and Prevention released numbers that estimate that 
one in every 150 children are living with an autism spectrum disorder, 
numbers that are higher than those released even just a few short years 
ago. And our service delivery system for individuals with autism is 
being overwhelmed by this increase. The care involved in treating these 
symptoms often requires hours of intensive therapy every week--regimens 
that are often inaccessible to many families.
  While we do not know what causes autism, we do know that with early 
intervention and concentrated treatment, the symptoms of autism 
spectrum disorder can be mitigated, enabling individuals with autism 
and their families to live less isolated lives. Our legislation will 
provide additional treatment and support resources, increasing access 
to effective therapies and essential support services for people with 
autism.
  This legislation will do the following: Establish a Demonstration 
Grant Program to Assist States with Service Provision. While the 
Interagency Autism Coordinating Committee (IACC) is developing a long-
term strategy for providing autism care and treatment services, there 
is currently no effort to plan for improved access to services in the 
immediate future. The EPIAA would establish a Treatment, Interventions 
and Services Evaluation Task Force to evaluate evidence-based services 
that could be implemented by States in the years immediately following 
enactment. The Secretary would then provide grants to states to help 
provide the services identified by the Task Force to individuals with 
autism.
  Develop a Demonstration Grant Program for Adult Autism Services. 
While early diagnosis and treatment are critical for children with 
autism, the need for intervention and services continues across the 
lifespan. In order to help address the needs of adults living with 
autism, the EPIAA would establish a grant program for states to provide 
appropriate interventions and services, such as housing or vocational 
training, to adults with autism.
  Increase Access to Services Following Diagnosis. After receiving a 
diagnosis of autism, many children and families must wait months before 
gaining access to appropriate treatment. In order to improve the 
ability to access a minimum level of services during this post-
diagnosis period, the EPIAA would mandate that the Secretary develop 
guidance and provide funding to eliminate delays in access to 
supplementary health care, behavioral support services, and individual 
and family-support services.

[[Page S3382]]

  Increase Support for Developmental Disabilities Centers of 
Excellence. Many families report difficulties in accessing services 
because of the limited number of health and education professionals who 
are trained to provide autism-specific services. In order to increase 
the number of individuals across sectors that can provide adequate care 
and treatment services for individuals living with autism, the EPIAA 
would increase the capacity of University Centers for Excellence in 
Developmental Disabilities Education, Research and Service (UCEDDS) to 
train professionals in meeting the treatment, interventions and service 
needs of both children and adults living with autism.
  Improve Protection and Advocacy Services. Early statistics from 2006 
indicate that a quarter of individuals served under already-existing 
protection and advocacy programs are individuals with autism, a 6 
percent increase from the previous year, yet thousands of individuals 
with autism are unable to access these services due to a lack of 
resources. The EPIAA will create a program to expand currently existing 
protection and advocacy services to assist individuals with autism and 
other emerging populations of individuals with disabilities.
  Improves Technical Assistance and Evaluation. The EPIAA would 
establish a National Technical Assistance Center for Autism Treatments, 
Interventions and Services to act as a clearinghouse for information 
about evidence-based treatments, interventions and services, and 
analyze the grant programs under this Act.
  The organizations supporting this legislation include Autism Speaks, 
the Autism Society of America, Easter Seals, the Association of 
University Centers for Disability, the Disability Policy Collaboration, 
and the National Disability Rights Network, and I have included their 
letters of support to be printed in the Record.
  I look forward to working with Senator Allard and all of our 
colleagues to pass this legislation and help people with autism get the 
services they need.
  There being no objection, the letters were ordered to be printed in 
the Record, as follows:

                                                Autism Speaks,

                                     New York, NY, March 19, 2007.
     Hon. Hillary Rodham Clinton,
     U.S. Senator,
     Washington, DC.
       Dear Senator Clinton: I write to offer the enthusiastic 
     endorsement of Autism Speaks for your proposed legislation, 
     ``The Expanding the Promise for Individuals with Autism Act 
     of 2007'' (``EPIAA'') and to thank you for your ongoing 
     leadership in providing an appropriate and necessary federal 
     response to the urgent national public health issue of 
     autism.
       Your bill is the logical next step for Congress to take in 
     creating a national battle plan against autism, following the 
     passage last year, with your significant support, of the 
     Combating Autism Act.
       The CAA deals primarily with biomedical research and with 
     systems for the early identification of children with autism. 
     The EPIAA will expand and intensify the federal commitment to 
     the provision of services to persons with autism, from the 
     immediate period following their diagnosis, throughout their 
     lifespan.
       In addition to the authorization of critical new resources 
     for important initiatives related to treatments, 
     interventions and services for both children and adults with 
     autism, Autism Speaks applauds the Congressional finding you 
     have drafted into the EPIAA that--``Individuals living with 
     autism have the same rights as other individuals to exert 
     control and choice over their own lives, to live 
     independently, and to fully participate in and contribute to 
     their communities . . .''

       The range of grant programs authorized by the EPIAA will 
     demonstrate mechanisms to fill large gaps in the present 
     system for the delivery of autism treatments, interventions 
     and services. The task force to be created by your 
     legislation--including vital input from the autism 
     community--will facilitate consensus on the state of 
     evidence-based treatments and services. And the GAO study, 
     which your legislation requires, will provide the basis for 
     dramatically improved service provision and financing.
       Once again, please accept the support and gratitude of 
     Autism Speaks for the EPIAA. We look forward to working with 
     you and your fine staff to enact these essential policies 
     into law.
           Sincerely,
     Robert C. Wright.
                                  ____



                                    Autism Society of America,

                                     Bethesda, MD, March 20, 2007.
     Hon. Hillary Rodham Clinton,
     U.S. Senate,
     Washington, DC.
     Hon. Wayne Allard,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton and Senator Allard: On behalf of the 
     1.5 million Americans with autism and their families, we at 
     the Autism Society of America (ASA) write in strong support 
     of the Expanding the Promise for Individuals with Autism Act 
     of 2007.
       Autism is a complex developmental disability that affects 
     the normal functioning of the brain, impacting development in 
     the areas of social interaction and communication skills. 
     Both children and adults with autism typically show 
     difficulties in verbal and non-verbal communication, social 
     interactions, and sensory processing. Research has 
     demonstrated that with early diagnosis, treatment, and 
     intervention, however, individuals with autism can experience 
     positive change in the language, social, or cognitive 
     outcomes. Unfortunately, as the Centers for Disease Control 
     and Prevention's autism prevalence study of 2007 showed, far 
     too many children with autism are not accessing the early 
     interventions, treatments, and services that they need.
       Just as critical, our current system for providing 
     community based services does not meet the complex needs of 
     adults with autism. Frequently, staff is not trained and 
     experienced in autism and is often at a loss when trying to 
     handle the unusual language, cognitive, behavioral and social 
     deficits of autism. As a result, adults with autism are not 
     able to access employment, health care, housing, and 
     community support services.
       The Expanding the Promise for Individuals with Autism Act 
     addresses these problems in many ways. This critical 
     legislation provides approximately $350 million to improve 
     access to comprehensive treatments, interventions, and 
     services for individuals with autism and their families. The 
     Expanding the Promise for Individuals with Autism Act comes 
     at a time when autism prevalence is increasing to more than 1 
     in 150 children in America today. As our Nation faces the 
     epidemic of autism, we must take steps now to strengthen our 
     services infrastructure to meet the needs of individuals with 
     autism and their families so that they too can lead happy and 
     productive lives throughout their lives.
       ASA strongly supports the Expanding the Promise for 
     Individuals With Autism Act of 2007, and applauds you for 
     your leadership on this important issue. We urge all Senators 
     to join you in cosponsoring this important legislation.
       Thank you, again, for your support of people with autism 
     and their families.
           Sincerely,
                                                     Lee Grossman,
     President and CEO.
                                  ____



                              Disability Policy Collaboration,

                                   Washington, DC, March 20, 2007.
     Hon. Hillary Rodham Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: The Disability Policy Collaboration 
     (DPC), a partnership of The Arc of the United States and 
     United Cerebral Palsy, appreciates your leadership on behalf 
     of children and adults with autism spectrum disorders and 
     related developmental disabilities. The DPC is pleased to 
     support the ``Expanding the Promise for Individuals with 
     Autism Act of 2007'' and its emphasis on developing and 
     providing effective interventions, supports and services to 
     individuals with autism spectrum disorders and their 
     families.
       Most individuals with autism spectrum disorder and related 
     developmental disabilities need major assistance in the areas 
     of early intervention, education, employment, transportation, 
     housing and health. Expanding the capacity of the service 
     delivery system to meet these needs and providing better 
     coordination of services will enable the individuals and 
     families to access appropriate assistance to live 
     independently and fully participate in their communities.
       The Disability Policy Collaboration applauds your 
     commitment to individuals with autism spectrum disorders and 
     related developmental disabilities and their families and 
     looks forward to working with you on speedy passage of this 
     bill in the 110th Congress.
           Sincerely,
                                                    Paul Marchand,
     Staff Director.
                                  ____

                Association of University Centers on Disabilities,
                                Silver Spring, MD, March 19, 2007.
     Hon. Hillary Rodham Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: On behalf of the Association of 
     University Centers on Disabilities (AUCD), this letter is to 
     thank you for your outstanding work and leadership on behalf 
     of children and adults with autism spectrum disorders and 
     related developmental disabilities. AUCD is in strong support 
     of your legislation to develop and provide effective 
     treatments, interventions, supports and services to 
     individuals with autism spectrum disorders and their 
     families.
       The prevalence of autism appears to be growing. According 
     to a recent report by the Centers for Disease Control and 
     Prevention, the prevalence of autism has reached epidemic 
     proportions, now affecting one in every 150 children. Clearly 
     from the information we get from our Centers and families, 
     our current service system is unprepared to meet the growing 
     needs of individuals with autism and their families. There 
     are pressing needs for trained professionals and providers

[[Page S3383]]

     to better serve children and adults with autism with the 
     latest evidence based information and effective practices. 
     Furthermore, while early detection and treatment are 
     essential, families of children with autism often face 
     numerous obstacles for obtaining high quality services for 
     their children. Similarly, adults with autism face long 
     waiting lists and many barriers in obtaining appropriate 
     community-based supports and services to enable them to 
     participate fully in society. The Expanding the Promise to 
     Individuals with Autism Act that you have developed greatly 
     helps to address these issues by providing demonstration 
     grants to states to provide immediate assistance to 
     individuals and their families.
       The membership of AUCD includes a network of 67 University 
     Centers for Excellence in Developmental Disabilities located 
     in every U.S. state and territory. These University Centers 
     provide research, education, and service to further 
     independence, productivity, and quality of life for 
     individuals with developmental disabilities, including 
     autism. University Centers collaborate with stakeholders in 
     states to identify and address training needs in creative and 
     effective ways. As the prevalence of autism has risen, 
     University Centers have initiated many activities to help 
     meet the growing need for children, adults, and families. 
     This bill builds upon these efforts by expanding the capacity 
     of University Centers to focus on interdisciplinary training 
     of professionals and providers in the area of autism, provide 
     technical assistance, and disseminate information on 
     effective community-based treatment, interventions and 
     services.
       AUCD applauds your commitment to individuals with autism 
     and their families and looks forward to working with you on 
     speedy passage of this bill in the 110th Congress.
       Sincerely,
     Royal Walker,
       Board President & Associate Director, Institute for 
     Disability Studies, University of Southern Mississippi.
     George Jesien,
       Executive Director, AUCD.
                                  ____



                                                 Easter Seals,

                                   Washington, DC, March 20, 2007.
     Hon. Hillary Rodham Clinton,
     U.S. Senate,
     Washington, DC.
       Dear Senator Clinton: Easter Seals is pleased to support 
     the Expanding the Promise for Individuals with Autism Act of 
     2007. This legislation will go a long way to help children 
     and adults with autism spectrum disorders and other 
     developmental disabilities live, learn, work and play in 
     their communities.
       The Expanding the Promise for Individuals with Autism Act 
     of 2007 (EPIAA) is necessary legislation that must become 
     law. Research has demonstrated that children who are 
     diagnosed by age 2 and who receive appropriate services can 
     live with greater independence. Yet, too many children are 
     not diagnosed until age 5. The EPIAA will allow us to do 
     better for these children. Parents and young adults with 
     autism across the country report that too many youth exit the 
     school system, needing housing and job training opportunities 
     that are in short supply. The EPIAA will allow us to do 
     better. Finally, parents, schools, and communities are 
     struggling to find the answers of how to provide appropriate 
     services and supports to individuals with autism. The EPIAA 
     will allow us to do better in this area as well.
       Over the last 20 years, Easter Seals has seen a dramatic 
     increase in the number of people we serve who live with 
     autism. More than a generation ago, Easter Seals was front 
     and center during the polio epidemic, working tirelessly to 
     help children and adults with polio gain the skills they need 
     to live independently. Today, we are the country's leading 
     provider of services for people with autism.
       Thank you for sponsoring this important legislation. We 
     look forward to working with you on the enactment of the 
     Expanding the Promise for Individuals with Autism Act of 
     2007.
           Sincerely,
                                               Katherine Beh Neas,
     Director, Congressional Affairs.
                                  ____

                                               National Disability


                                               Rights Network,

                                   Washington, DC, March 20, 2007.
     Hon. Hillary Clinton,
     Russell Senate Office Building,
     Washington, DC.
     Hon. Wayne Allard,
     Dirksen Senate Office Building,
     Washington, DC.
       Dear Senators Clinton and Allard: The National Disability 
     Rights Network (NDRN) is pleased with your introduction of 
     the Expanding the Promise for Individuals with Autism Act of 
     2007. NDRN is the nonprofit membership organization for the 
     federally mandated Protection and Advocacy (P&A) Systems and 
     Client Assistance Programs (CAP). The P&A/CAP network 
     operates in every state and territory in the United States. 
     Collectively, the P&A/CAP network is the largest provider of 
     legally based advocacy services to people with disabilities 
     in the United States.
       Currently, the P&A network is on the front-line of work 
     with individuals with autism and their families. Early 
     statistics from FY 2006 indicate that 25 percent of the 
     people served by the Protection and Advocacy for 
     Developmental Disabilities program (PADD) were individuals 
     with autism. This is an increase of 6 percent from the 
     previous year. Unfortunately, due to the high demand for P&A 
     services from children and adults with all types of 
     disabilities and their families--and the concomitant 
     inadequate funding for the P&A programs--thousands of 
     individuals with autism were unable to access critical P&A 
     services.
       Key components of the P&A network's legally based advocacy 
     include investigating abuse and neglect; seeking systemic 
     change to prevent harm to children and adults with 
     disabilities; advocating for basic human and civil rights; 
     and ensuring accountability in education, employment, 
     housing, public services, transportation, and health care. 
     Each of these components is critical to ensuring that 
     individuals with autism--no matter their age--get access to 
     the supports and services they need to live as successfully 
     and as safely as possible in the community.
       Parents of children with autism--both young children and 
     adult children--know the important role that P&A services can 
     play in their lives. They have advocated for the inclusion of 
     a P&A component in this legislation in order to increase the 
     ability to serve this vulnerable population. These families 
     know that once this program is authorized and funded, the P&A 
     in their state will be mandated to make autism a priority for 
     services, providing individuals and their families with the 
     help needed to live full and successful lives.
       NDRN is pleased to work with you on the passage of this 
     legislation, and to ensure that critical services and 
     supports are available to both children and adults with 
     autism. For more information, please contact Kathy McGinley, 
     Deputy Executive Director for Public Policy.
           Sincerely,
                                                      Curt Decker,
                                               Executive Director.
                                 ______