Illinois General Assembly - Full Text of Public Act 094-0632
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Public Act 094-0632




Public Act 094-0632
SB1698 Enrolled LRB094 11317 RXD 42143 b

    AN ACT concerning health.
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
    Section 1. Short title. This Act shall be cited as the
Autism Spectrum Disorders Reporting Act.
    Section 5. Legislative findings and purpose.
    (a) The General Assembly finds that:
        (1) the incidence of autism spectrum disorders has
    increased significantly in Illinois, as in other states;
        (2) the Centers for Disease Control and Prevention
    estimates that autism spectrum disorders affects 1 in 166
        (3) autism spectrum disorders affect children of every
    racial, ethnic, and socioeconomic background, and occurs
    in every part of Illinois;
        (4) little is known about causes of autism, although
    research has indicated that autism is due to an abnormality
    of brain development that may be related to environmental
    factors, pharmacological agents, and other prenatal or
    early childhood exposures, genetics or a combination
        (5) because there is no biologic marker for autism,
    surveillance for this disability presents several
    technical and logistic challenges that must be overcome;
        (6) families of children with autism experience
    tremendous psychological and financial stress related to
    their child's disability;
        (7) children with autism require long-term care and
    services; special education costs for a child with autism
    average more than $19,000 per year nationwide, more than 3
    times the cost of the average student and more than any
    other special education category; some specially
    structured programs cost over $40,000 per year, and care in
    a residential school costs between $80,000 and $100,000 per
    year; these costs continue as children become adults, which
    can be more than $50,000 per person;
        (8) genetic and environmental factors have been
        (9) there is no known cure for autism, although some
    available therapies, treatments, and medicines may relieve
    the severity and symptoms associated with the disorders;
        (10) there exists no unified effort to collect and
    analyze information on autism spectrum disorders and their
    potential effects on public health, families, schools, and
    the economy in Illinois;
        (11) the lack of comprehensive information has caused
    concern on the part of Illinois citizens and a lack of
    effective control by the State;
        (12) it is the obligation of the State to inform and
    protect the citizens of Illinois by developing a
    comprehensive and integrated data system on autism
    spectrum disorders and public health; and
        (13) the establishment of an Autism Spectrum Disorder
    Registry will help better define who is affected by autism
    and the impact of autism; define the range of impairments
    and disability associated with autism; identify better
    mechanisms to refer persons with autism to available
    services; and provide a research tool for universities,
    physicians, and policymakers to conduct studies in
    (b) It is the purpose of this Act to establish a unified
statewide project to collect, compile, and correlate
information on public health and autism spectrum disorders, to
be known as the Autism Spectrum Disorders Registry. The
information is to be used to assist in the determination of
public policy and to provide a source of information for
researchers and the public, except when public disclosure of
the information would violate the provisions of this Act and
other applicable laws concerning confidentiality.
     (c) In particular, the purpose of the collection of autism
spectrum disorder incidence information is to:
        (1) monitor incidence trends of autism spectrum
    disorders to detect potential public health problems,
    predict risks, and assist in investigating clusters;
        (2) more accurately target intervention resources for
    communities and patients and their families;
        (3) inform health professionals and citizens about
    risks, early detection, and treatment of autism spectrum
        (4) promote high quality research to provide better
    information for the study of autism spectrum disorders,
    treatment, interventions, and services, and the impact of
    autism spectrum disorders on families, schools, public
    health, and the economy; and
        (5) promote Illinois as a national leader in research
    into the causes, effects, and treatment of autism spectrum
    Section 10. Definitions. In this Act:
    "Autism spectrum disorder" means a pervasive developmental
disorder described by the American Psychiatric Association or
the World Health Organization diagnostic manuals as an autistic
disorder, atypical autism, Asperger Syndrome, Rett Syndrome,
childhood disintegrative disorder, or pervasive developmental
disorder not otherwise specified; or a special education
classification for autism or other disabilities related to
    "Department" means the Department of Public Health.
    "Director" means the Director of the Department of Public
    "Facility" means a governmental or private agency,
department, institution, clinic, laboratory, hospital, or a
health maintenance organization, association, or other similar
unit designated by the Director.
    "Health care professional" means a physician licensed to
practice medicine in all of its branches under the Illinois
Medical Practice Act of 1987 or a clinical psychologist
licensed under the Clinical Psychologist Licensing Act.
    Section 15. Reporting autism spectrum disorders. A health
care professional who diagnoses any individual that resides in
the State with an autism spectrum disorder shall report within
30 days the existence of an autism spectrum disorder diagnosis
along with all such additional information as determined in
rules promulgated pursuant to this Act. On or before September
1, 2005, the Department of Human Services, Department of Public
Aid, and the State Board of Education shall report the
existence and content of data compiled by them in the course of
their duties pertaining to individuals with autism spectrum
disorders. The annual reports shall be filed on January 1 of
each year. The Director shall also promulgate rules and
procedures allowing for individuals with autism spectrum
disorder and their parents or guardians to voluntarily report
their own diagnosis and information.
    Section 20. Reports; contents, filing, availability for
research and public inspection.
    (a) The reports prescribed in Section 15 of this Act shall
be designated an autism spectrum disorder report and shall
contain information that the Director considers necessary to
identify, locate, and investigate the occurrence, frequency,
incidence, cause, effect, and prognosis of autism spectrum
disorder and other relevant data and findings.
    (b) The Director shall promulgate rules regarding the form,
content, and manner of filing the report prescribed in Section
15 of this Act, which shall be submitted to the Department
unless otherwise prescribed by the Director. Any rules
promulgated by the Director shall contain a specific provision
guaranteeing the maintenance of the physician-patient
privilege and compliance with all provisions of the Genetic
Information Privacy Act.
    (c) Autism spectrum disorder reports and data shall be
maintained by the Department in a manner suitable for use for
research purposes and shall be made available to persons as
prescribed in Section 25 of this Act.
    (d) A report or other data relating to autism spectrum
disorder that discloses the identity of an individual that was
reported as having autism spectrum disorder shall be made
available only to persons that demonstrate a need for the
report or other data that is essential to health related
research and complies with the Illinois Health Statistics Act.
No report or data or portion of the data that discloses the
identity of the individual or health care professional shall be
made available to the public. This data shall be subject to the
provisions of the Communicable Disease Report Act.
    (e) Nothing in this Section shall mandate the Department to
investigate or otherwise follow-up any reported incidence of
autism spectrum disorder.
    (f) Any person making a report under this Act shall have
immunity from any liability, civil or criminal, that may result
by reason of making the report, except for willful or wanton
    Section 25. Contracts; Autism Spectrum Disorder Registry.
The Department may enter into contracts with individuals,
corporations, hospitals, universities, not-for-profit
corporations, governmental entities, or other organizations
whereby such individuals, organizations, or agencies agree to
provide assistance in the compilation of the Autism Spectrum
Disorder Registry or to conduct research on behalf of the
Department consistent with the purposes of this Act. The
Director shall adopt rules governing such contracts, which
shall include: (i) requirements for a written protocol
outlining the purpose and public benefit of the research; (ii)
the description, methods, and projected results of the
research; (iii) peer review by other scientists; (iv) the
methods and facilities to protect the confidentiality of the
data; and (v) the qualifications of the researcher proposing to
undertake the research.
    Section 30. Annual progress reports. The Department shall
annually report to the General Assembly beginning September 1,
2005. Beginning January 1, 2006, the Department shall provide
annual progress reports to the Governor and the General
Assembly by January 1 of each year. The annual report shall
include information on the progress of the Autism Spectrum
Disorder Registry, as well as descriptions of any studies which
are underway or have been completed, including those performed
to determine the potential public health significance of an
increase in autism incidence, together with any findings and
recommendations. The annual report shall also include a list of
those persons, organizations, and agencies which have refused
to cooperate with the Department in the collection or
transmission of information under this Act.
    Section 35. Implementation. The Director shall promulgate
rules to implement this Act which fosters the study, research,
diminution, and control of autism spectrum disorders in this
State. This Act shall be subject to appropriation.
    Section 99. Effective date. This Act takes effect upon
becoming law.

Effective Date: 8/19/2005