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 
    children;
        (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 
    thereof;
        (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 
    suggested; 
        (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 
    Illinois.
    (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 
    disorders;
        (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 
    disorders.
 
    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 
autism.
    "Department" means the Department of Public Health.
    "Director" means the Director of the Department of Public 
Health.
    "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 
misconduct.
 
    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.