Developmental disabilities surveillance and research program

(a)

Surveillance program; centers of excellence; clearinghouse

Section 102(e) of the Children’s Health Act of 2000 (42 U.S.C. 247b–4b) is amended by striking There are authorized and all that follows and inserting the following: For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for fiscal year 2006 and each subsequent fiscal year.. (b)

Additional programs

Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end thereof the following:

Programs relating to Autism

399AA.

Information and education relating to Autism

(a)

In general

The Secretary shall establish and implement a program to provide information and education on autism and its risk factors to health professionals and the general public, including information and education on advances in the diagnosis and treatment of autism and training and continuing education through programs for scientists, physicians, and other health professionals who provide care for patients with autism. The program shall place special emphasis on early identification of autism and those at risk for autism and prompt referral for appropriate services. (b)

Stipends

The Secretary may use amounts made available under this section to provide stipends for health professionals who are enrolled in training programs under this section. (c)

Authorization of appropriations

There is authorized to be appropriated to carry out this section, $10,000,000 for each of fiscal years 2007 through 2011.

399BB.

Interagency Autism Coordinating Committee

(a)

Establishment

The Secretary shall establish a committee to be known as the Autism Coordinating Committee (in this section referred to as the Committee) to coordinate all efforts within the Department of Health and Human Services concerning autism, including activities carried out through the National Institutes of Health and the Centers for Disease Control and Prevention under the amendments made by the National Autism Research Act. (b)

Membership

(1)

In general

The Committee shall be composed of— (A)the Director of the Centers for Disease Control and Prevention; (B)the Directors of such national research institutes of the National Institutes of Health as the Secretary determines appropriate; (C)the heads of such other agencies as the Secretary determines appropriate; and (D)the additional members appointed under paragraph (2) (if any). (2)

Additional members

If determined appropriate by the Secretary, the Secretary may appoint to the Committee— (A)individuals with autism or other pervasive developmental disorders; (B)parents or legal guardians of individuals with autism or other pervasive developmental disorders; (C)representatives of leading autism research and service organizations; and (D)representatives of other governmental agencies that serve children with autism such as the Department of Education. (c)

Administrative support; terms of services; other provisions

The following shall apply with respect to the Committee: (1)The Committee shall receive necessary and appropriate administrative support from the Secretary. (2)Members of the Committee appointed under subsection (b)(2)(A) shall serve for a term of 3 years, and may serve for an unlimited number of terms if reappointed. (3)The Committee shall meet not less than 2 times each year.

399CC.

Screening, diagnosis, and treatment of autism; medical care for individuals with autism

(a)

Statewide autism screening, diagnosis, and intervention programs and systems

(1)

In general

The Secretary, acting through the Administrator of the Health Resources and Services Administration, shall award grants or cooperative agreements to eligible entities to develop statewide autism screening, diagnosis, and intervention programs and systems for the purposes described in paragraph (2). (2)

Purposes

The purposes described in this paragraph are the following: (A)To develop and monitor the efficacy of statewide autism screening, diagnosis, and intervention programs and systems, ensuring that all children are screened for autism before their second birthday, and that children at risk for autism receive appropriate services as early as possible. Intervention includes referral to schools and agencies, including community, consumer, and parent-based agencies, and organizations and other programs mandated by part C of the Individuals with Disabilities Education Act, which offer programs specifically designed to meet the unique needs of children with autism. (B)To collect data on statewide autism screening, diagnosis, and intervention programs and systems that can be used for applied research, program evaluation, and policy development. (C)To provide comprehensive medical care for individuals with autism through evidence-based practices, with specific attention to medical conditions that may be associated with autism, and to disseminate information on the medical care of individuals with autism to health professionals and the general public. In carrying out the program under this paragraph, a grant shall be awarded to a national organization that will establish and support regional centers of clinical excellence to provide medical care to individuals with autism and promote research aimed at improving the treatment of such individuals, and that will build a shared national medical database to record the results of treatments and studies at the regional centers. (3)

Parental consent

Screenings and other services available under this section for a child may not be provided without the consent of a parent or legal guardian of the child. (4)

Set aside of funds

From amounts appropriated under subsection (e), the Secretary shall set-aside not less than $4,000,000 for each of fiscal years 2007 through 2011 to carry out activities described in paragraph (2)(C). (b)

Technical assistance, data management, and applied research

The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall award grants or cooperative agreements to provide technical assistance to State agencies to conduct applied research related to autism screening, diagnosis, and intervention programs and systems. In carrying out this section the Secretary shall develop standardized procedures for data management and program effectiveness and costs, including procedures— (1)to ensure quality monitoring of autism screening, diagnosis, and intervention programs and systems; (2)to provide technical assistance on data collection and management; (3)to study the costs and effectiveness of autism screening, diagnosis, and intervention programs and systems conducted by State-based programs in order to address issues of importance to State and national policymakers; (4)to identify the causes and risk factors for autism; (5)to study the effectiveness of autism screening, diagnosis, and intervention programs and systems by assessing the intellectual and social development, cognitive status, and language skills of children with autism at school age; and (6)to promote the sharing of data regarding autism with State-based birth defects and developmental disabilities monitoring programs and environmental discharge monitoring programs of the Environmental Protection Agency for the purpose of identifying previously unknown causes of and risk factors for autism. (c)

Coordination and collaboration

(1)

In general

In carrying out programs under this section, the Administrator of the Health Resources and Services Administration, the Director of the Centers for Disease Control and Prevention, and the Director of the National Institutes of Health shall collaborate and consult with— (A)other Federal, State and local agencies, including those responsible for early intervention services pursuant to title XIX of the Social Security Act (particularly the Medicaid Early and Periodic Screening, Diagnosis and Treatment Program), title XXI of the Social Security Act (State Children’s Health Insurance Program), title V of the Social Security Act (Maternal and Child Health Block Grant Program), and part C of the Individuals with Disabilities Education Act; (B)consumer groups of, and that serve, individuals with autism and their families; (C)appropriate national medical and other health and education specialty organizations; (D)individuals with autism and their families; (E)other qualified personnel who possess the specialized knowledge, skills, and attributes needed to serve autistic children and their families; and (F)related commercial industries. (2)

Policy development

The Administrator of the Health Resources and Services Administration, the Director of the Centers for Disease Control and Prevention, and the Director of the National Institutes of Health shall coordinate and collaborate on recommendations for policy development at the Federal and State levels and with the private sector, including consumer, medical, and other health and education professional-based organizations, with respect to autism screening, diagnosis, and intervention programs and systems. (3)

State early detection, diagnosis, and intervention programs and systems

The Administrator of the Health Resources and Services Administration and the Director of the Centers for Disease Control and Prevention shall coordinate and collaborate in assisting States to establish autism screening, diagnosis, and intervention programs and systems under subsection (a) and to develop a data collection system under subsection (b). (d)

Authorization of appropriations

There are authorized to be appropriated— (1)to carry out subsection (a), $75,000,000 for each of fiscal years 2007 through 2011; and (2)to carry out subsection (b), $25,000,000 for each of fiscal years 2007 through 2011.

399DD.

Annual report on autism

(a)

In general

Not later than January 1, 2006, and each January 1 thereafter, the Secretary shall prepare and submit to the appropriate committees of Congress, a report concerning the implementation of this part. (b)

Contents

The report, utilizing uniform reporting methods and procedures, shall— (1)provide the dollar amount that each institute of the National Institutes of Health expended on autism research in the year for which the report was prepared; and (2)detail the progress and success of the National Institutes of Health in implementing and funding the recommendations contained in the Autism Research Roadmap and Matrix of the Interagency Autism Coordinating Committee.