[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[S. 2855 Introduced in Senate (IS)]







106th CONGRESS
  2d Session
                                S. 2855

To amend the Public Health Service Act to provide for the establishment 
              of a national program of autism registries.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             July 12, 2000

Mr. Torricelli introduced the following bill; which was read twice and 
  referred to the Committee on Health, Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to provide for the establishment 
              of a national program of autism registries.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``National Autism Registry Act''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Autism Spectrum Disorders (ASD), such as classic 
        autism, Asperger's syndrome and pervasive developmental 
        disorder (also known as atypical autism), are defined as 
        developmental and behavioral impairments resulting in impaired 
        social interactions, unusual communication styles, and 
        restricted or repetitive behaviors.
            (2) Children with autism are unable to interact 
        appropriately with other people because they lack a fundamental 
        interest in social contact.
            (3) Autism affects children of every racial, ethnic, and 
        socioeconomic background.
            (4) Recent studies have found between 12 and 15 children 
        per 10,000 who are affected with autism.
            (5) Studies done in Europe and Asia indicate that as many 
        as 2 out of every 1,000 children have some type of autism.
            (6) A recent investigation by the Centers for Disease 
        Control and Prevention in Brick Township, New Jersey, found a 
        prevalence rate for autism of 4.0 per 1,000 children and a rate 
        of 6.7 per 1,000 children for the more broadly defined category 
        of Autistic Spectrum Disorders.
            (7) It is estimated that there are at least 400,000 
        children and adults in the United States with autism. This rate 
        is 3 to 4 times higher than rates from studies conducted 15 to 
        20 years ago.
            (8) Research has indicated that autism is due to an 
        abnormality of brain development.
            (9) Because there is no biologic marker for autism, 
        surveillance for this disability presents several technical and 
        logistic challenges that must be overcome.
            (10) Reports to the Centers for Disease Control and 
        Prevention of autism clusters are increasing.
            (11) Families of children with autism experience tremendous 
        psychologic and financial stress related to their child's 
        disability.
            (12) Children with autism require long-term care and 
        services. Special education costs for a child with autism are 
        more than $8,000 per year, with some specially structure 
        programs costing about $30,000, and care in a residential 
        school costing between $80,000 and $100,000 per year. These 
        costs continue as children become adults and require round the 
        clock care and assistance. The yearly costs of such care 
        average $50,000 per person.
            (13) Little is known about causes of autism, although 
        genetic and environmental factors and other early prenatal 
        exposures have been suggested.
            (14) There is no cure for autism, although some available 
        medicines may relieve some symptoms associated with the 
        disorders.
            (15) A uniform nationwide system of registries will help 
        better define--
                    (A) who is affected by autism and the impact of 
                autism;
                    (B) the range of impairments and disability 
                associated with autism; and
                    (C) better mechanisms to refer persons with autism 
                to available services.
            (16) Establishing a separate trust fund in the Treasury of 
        the United States will allow the Federal Government to increase 
        funding for autism research.

SEC. 3. AUTISM PROGRAM.

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

            ``Part O--National Program for Autism Registries

``SEC. 399O. NATIONAL PROGRAM FOR AUTISM REGISTRIES.

    ``(a) Program Development.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, shall--
            ``(1) establish a baseline level of data that is to be 
        collected by a State (or its designee) for the operation of the 
        autism registry of the State; and
            ``(2) conduct workshops with interested parties including 
        parent groups, physicians, and researchers to reach consensus 
        on the content of the baseline data collection efforts under 
        paragraph (1).
    ``(b) Grants.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, may make grants to--
            ``(1) States or their designees for the operation of the 
        State's autism registry; and
            ``(2) academic institutions to enable such institutions, 
        with respect to autism, to--
                    ``(A) conduct population-based surveillance, 
                epidemiologic studies, and possible interventions for 
                developmental disabilities (including autism);
                    ``(B) conduct epidemiologic case-control studies to 
                examine prenatal, perinatal, and postnatal factors 
                involved in causing autism; or
                    ``(C) conduct applied research that will support 
                the development of uniform autism registries, to--
                            ``(i) collect demographic information about 
                        each case of autism;
                            ``(ii) collect administrative information 
                        about the source of the information collected 
                        under clause (i), and the dates of 
                        hospitalization, care, and treatment;
                            ``(iii) collect information on the outcomes 
                        associated with autism (such as impairments, 
                        functional limitations, and disability);
                            ``(iv) collect monitoring information on 
                        State trends in developmental disabilities 
                        (including autism) through the use of well 
                        defined and reliable case definitions;
                            ``(v) collect information on multiple sites 
                        to provide for the conduct of epidemiological 
                        studies into the causes of developmental 
                        disabilities (including autism);
                            ``(vi) conduct evaluations of current and 
                        future interventions for developmental 
                        disabilities (including autism) prevention; and
                            ``(vii) conduct other activities determined 
                        appropriate by the Secretary.
    ``(c) Eligibility for Grants.--
            ``(1) In general.--No grant shall be made by the Secretary 
        under subsection (b) unless an application has been submitted 
        to, and approved by, the Secretary. Such application shall be 
        in such form, submitted in such a manner, and be accompanied by 
        such information, as the Secretary may specify. No such 
        application may be approved unless it contains assurances that 
        the applicant will use the funds provided only for the purposes 
        specified in the approved application and in accordance with 
        the requirements of subsection (b), that the application will 
        establish such fiscal control and fund accounting procedures as 
        may be necessary to assure proper disbursement and accounting 
        of Federal funds paid to the applicant under subsection (b), 
        and that the applicant will comply with review requirements 
        under sections 491 and 492.
            ``(2) Establishment of registries.--Each applicant, prior 
        to receiving Federal funds under subsection (b), shall provide 
        for the establishment of a registry that will--
                    ``(A) comply with the uniform data collection 
                methods established under subsection (a);
                    ``(B) comply with appropriate standards of 
                completeness, timeliness, and quality of data 
                collection;
                    ``(C) provide for periodic reports of autism 
                registry data; and
                    ``(D) provide for the authorization under State law 
                of the statewide autism registry, including the 
                promulgation of regulations providing--
                            ``(i) a means to assure timely and complete 
                        reporting of autism cases (as described in 
                        subsection (b)) to the statewide autism 
                        registry by hospitals or other facilities 
                        providing care or social services to patients 
                        with autism;
                            ``(ii) a means to assure the complete 
                        reporting of autism cases (as defined in 
                        subsection (b)) to the statewide autism 
                        registry by physicians, and all other health 
                        care practitioners diagnosing or providing 
                        treatment for autistic patients, except for 
                        cases directly referred to or previously 
                        admitted to a hospital or other facility 
                        providing care or services to patients in that 
                        State and reported by those facilities;
                            ``(iii) a means for the statewide autism 
                        registry to access all records of physicians, 
                        hospitals, clinics, treatment centers, and all 
                        other facilities, individuals, or agencies 
                        providing such services to patients or 
                        individuals who care for autistic individuals, 
                        or that identify cases of autism or would 
                        establish characteristics of autism, treatment 
                        of autism, or medical status of any identified 
                        patient; and
                            ``(iv) for the reporting of autism case 
                        data to the statewide autism registry in such a 
                        format, with such data elements, and in 
                        accordance with such standards of quality 
                        timeliness and completeness, as may be 
                        established by the Secretary.
            ``(3) Applied research.--Applicants for applied research 
        shall conduct applied research as determined by the Secretary, 
        acting through the Director of the Centers for Disease Control 
        and Prevention, to be necessary to support the development of 
        registry activities as defined in this section.
            ``(4) Assurances for confidentiality of registry data.--
        Each applicant shall provide to the satisfaction of the 
        Secretary for--
                    ``(A) a means by which confidential case data may, 
                in accordance with State law, be disclosed to autism 
                researchers for the purposes of the prevention, control 
                and research of autism;
                    ``(B) the authorization or the conduct, by the 
                statewide autism registry or other persons and 
                organizations, of studies utilizing statewide autism 
                registry data, including studies of the sources and 
                causes of autism, evaluations of the cost, quality, 
                efficacy, and appropriateness of preventative and other 
                services and programs relating to autism, and any other 
                clinical, epidemiological, or other autism research;
                    ``(C) the protection of individuals complying with 
                the law, including provisions specifying that no person 
                shall be held liable in any civil action with respect 
                to an autism case report provided to the statewide 
                autism registry, or with respect to access to autism 
                case information provided to the statewide autism 
                registry; and
                    ``(D) the protection of individual privacy and 
                confidentiality consistent with Federal and State laws.

``SEC. 399P. TECHNICAL ASSISTANCE IN OPERATIONS OF STATEWIDE 
              REGISTRIES.

    ``The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention, may, directly or through grants and 
contracts, or both, provide technical assistance to the States in the 
establishment and operation of statewide registries, including 
assistance in the development of model legislation for statewide autism 
registries and assistance in establishing a computerized reporting and 
data processing system. In providing such assistance, the Secretary 
shall encourage States to utilize standardized procedures where 
appropriate.

``SEC. 399Q. AUTHORIZATION OF APPROPRIATIONS.

    ``For the purpose of carrying out this part, there are authorized 
to be appropriated $50,000,000 for fiscal year 2001, and such sums as 
may be necessary for each of the fiscal years 2002 through 2006.''.
                                 <all>