Illinois General Assembly - Full Text of SB1698
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Full Text of SB1698  94th General Assembly



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1     AN ACT concerning health.
2     Be it enacted by the People of the State of Illinois,
3 represented in the General Assembly:
4     Section 1. Short title. This Act shall be cited as the
5 Autism Spectrum Disorders Reporting Act.
6     Section 5. Legislative findings and purpose.
7     (a) The General Assembly finds that:
8         (1) the incidence of autism spectrum disorders has
9     increased significantly in Illinois, as in other states;
10         (2) the Centers for Disease Control and Prevention
11     estimates that autism spectrum disorders affects 1 in 166
12     children;
13         (3) autism spectrum disorders affect children of every
14     racial, ethnic, and socioeconomic background, and occurs
15     in every part of Illinois;
16         (4) little is known about causes of autism, although
17     research has indicated that autism is due to an abnormality
18     of brain development that may be related to environmental
19     factors, pharmacological agents, and other prenatal or
20     early childhood exposures, genetics or a combination
21     thereof;
22         (5) because there is no biologic marker for autism,
23     surveillance for this disability presents several
24     technical and logistic challenges that must be overcome;
25         (6) families of children with autism experience
26     tremendous psychological and financial stress related to
27     their child's disability;
28         (7) children with autism require long-term care and
29     services; special education costs for a child with autism
30     average more than $19,000 per year nationwide, more than 3
31     times the cost of the average student and more than any
32     other special education category; some specially



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1     structured programs cost over $40,000 per year, and care in
2     a residential school costs between $80,000 and $100,000 per
3     year; these costs continue as children become adults, which
4     can be more than $50,000 per person;
5         (8) genetic and environmental factors have been
6     suggested;
7         (9) there is no known cure for autism, although some
8     available therapies, treatments, and medicines may relieve
9     the severity and symptoms associated with the disorders;
10         (10) there exists no unified effort to collect and
11     analyze information on autism spectrum disorders and their
12     potential effects on public health, families, schools, and
13     the economy in Illinois;
14         (11) the lack of comprehensive information has caused
15     concern on the part of Illinois citizens and a lack of
16     effective control by the State;
17         (12) it is the obligation of the State to inform and
18     protect the citizens of Illinois by developing a
19     comprehensive and integrated data system on autism
20     spectrum disorders and public health; and
21         (13) the establishment of an Autism Spectrum Disorder
22     Registry will help better define who is affected by autism
23     and the impact of autism; define the range of impairments
24     and disability associated with autism; identify better
25     mechanisms to refer persons with autism to available
26     services; and provide a research tool for universities,
27     physicians, and policymakers to conduct studies in
28     Illinois.
29     (b) It is the purpose of this Act to establish a unified
30 statewide project to collect, compile, and correlate
31 information on public health and autism spectrum disorders, to
32 be known as the Autism Spectrum Disorders Registry. The
33 information is to be used to assist in the determination of
34 public policy and to provide a source of information for
35 researchers and the public, except when public disclosure of
36 the information would violate the provisions of this Act and



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1 other applicable laws concerning confidentiality.
2      (c) In particular, the purpose of the collection of autism
3 spectrum disorder incidence information is to:
4         (1) monitor incidence trends of autism spectrum
5     disorders to detect potential public health problems,
6     predict risks, and assist in investigating clusters;
7         (2) more accurately target intervention resources for
8     communities and patients and their families;
9         (3) inform health professionals and citizens about
10     risks, early detection, and treatment of autism spectrum
11     disorders;
12         (4) promote high quality research to provide better
13     information for the study of autism spectrum disorders,
14     treatment, interventions, and services, and the impact of
15     autism spectrum disorders on families, schools, public
16     health, and the economy; and
17         (5) promote Illinois as a national leader in research
18     into the causes, effects, and treatment of autism spectrum
19     disorders.
20     Section 10. Definitions. In this Act:
21     "Autism spectrum disorder" means a pervasive developmental
22 disorder described by the American Psychiatric Association or
23 the World Health Organization diagnostic manuals as an autistic
24 disorder, atypical autism, Asperger Syndrome, Rett Syndrome,
25 childhood disintegrative disorder, or pervasive developmental
26 disorder not otherwise specified; or a special education
27 classification for autism or other disabilities related to
28 autism.
29     "Department" means the Department of Public Health.
30     "Director" means the Director of the Department of Public
31 Health.
32     "Facility" means a governmental or private agency,
33 department, institution, clinic, laboratory, hospital, or a
34 health maintenance organization, association, or other similar
35 unit designated by the Director.



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1     "Health care professional" means a physician licensed to
2 practice medicine in all of its branches under the Illinois
3 Medical Practice Act of 1987 or a clinical psychologist
4 licensed under the Clinical Psychologist Licensing Act.
5     Section 15. Reporting autism spectrum disorders. A health
6 care professional who diagnoses any individual that resides in
7 the State with an autism spectrum disorder shall report within
8 30 days the existence of an autism spectrum disorder diagnosis
9 along with all such additional information as determined in
10 rules promulgated pursuant to this Act. On or before September
11 1, 2005, the Department of Human Services, Department of Public
12 Aid, and the State Board of Education shall report the
13 existence and content of data compiled by them in the course of
14 their duties pertaining to individuals with autism spectrum
15 disorders. The annual reports shall be filed on January 1 of
16 each year. The Director shall also promulgate rules and
17 procedures allowing for individuals with autism spectrum
18 disorder and their parents or guardians to voluntarily report
19 their own diagnosis and information.
20     Section 20. Reports; contents, filing, availability for
21 research and public inspection.
22     (a) The reports prescribed in Section 15 of this Act shall
23 be designated an autism spectrum disorder report and shall
24 contain information that the Director considers necessary to
25 identify, locate, and investigate the occurrence, frequency,
26 incidence, cause, effect, and prognosis of autism spectrum
27 disorder and other relevant data and findings.
28     (b) The Director shall promulgate rules regarding the form,
29 content, and manner of filing the report prescribed in Section
30 15 of this Act, which shall be submitted to the Department
31 unless otherwise prescribed by the Director. Any rules
32 promulgated by the Director shall contain a specific provision
33 guaranteeing the maintenance of the physician-patient
34 privilege and compliance with all provisions of the Genetic



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1 Information Privacy Act.
2     (c) Autism spectrum disorder reports and data shall be
3 maintained by the Department in a manner suitable for use for
4 research purposes and shall be made available to persons as
5 prescribed in Section 25 of this Act.
6     (d) A report or other data relating to autism spectrum
7 disorder that discloses the identity of an individual that was
8 reported as having autism spectrum disorder shall be made
9 available only to persons that demonstrate a need for the
10 report or other data that is essential to health related
11 research and complies with the Illinois Health Statistics Act.
12 No report or data or portion of the data that discloses the
13 identity of the individual or health care professional shall be
14 made available to the public. This data shall be subject to the
15 provisions of the Communicable Disease Report Act.
16     (e) Nothing in this Section shall mandate the Department to
17 investigate or otherwise follow-up any reported incidence of
18 autism spectrum disorder.
19     (f) Any person making a report under this Act shall have
20 immunity from any liability, civil or criminal, that may result
21 by reason of making the report, except for willful or wanton
22 misconduct.
23     Section 25. Contracts; Autism Spectrum Disorder Registry.
24 The Department may enter into contracts with individuals,
25 corporations, hospitals, universities, not-for-profit
26 corporations, governmental entities, or other organizations
27 whereby such individuals, organizations, or agencies agree to
28 provide assistance in the compilation of the Autism Spectrum
29 Disorder Registry or to conduct research on behalf of the
30 Department consistent with the purposes of this Act. The
31 Director shall adopt rules governing such contracts, which
32 shall include: (i) requirements for a written protocol
33 outlining the purpose and public benefit of the research; (ii)
34 the description, methods, and projected results of the
35 research; (iii) peer review by other scientists; (iv) the



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1 methods and facilities to protect the confidentiality of the
2 data; and (v) the qualifications of the researcher proposing to
3 undertake the research.
4     Section 30. Annual progress reports. The Department shall
5 annually report to the General Assembly beginning September 1,
6 2005. Beginning January 1, 2006, the Department shall provide
7 annual progress reports to the Governor and the General
8 Assembly by January 1 of each year. The annual report shall
9 include information on the progress of the Autism Spectrum
10 Disorder Registry, as well as descriptions of any studies which
11 are underway or have been completed, including those performed
12 to determine the potential public health significance of an
13 increase in autism incidence, together with any findings and
14 recommendations. The annual report shall also include a list of
15 those persons, organizations, and agencies which have refused
16 to cooperate with the Department in the collection or
17 transmission of information under this Act.
18     Section 35. Implementation. The Director shall promulgate
19 rules to implement this Act which fosters the study, research,
20 diminution, and control of autism spectrum disorders in this
21 State. This Act shall be subject to appropriation.
22     Section 99. Effective date. This Act takes effect upon
23 becoming law.