Full Text of SB1698 94th General Assembly
SB1698eng 94TH GENERAL ASSEMBLY
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| AN ACT concerning health.
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| Be it enacted by the People of the State of Illinois,
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| represented in the General Assembly:
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| 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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| 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
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| (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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| 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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| "Qualified professional" means a medical, clinical or | 2 |
| educational professional in a position to observe children with | 3 |
| developmental disabilities, including, psychologists, | 4 |
| physicians, teachers, speech and language pathologists, | 5 |
| occupational therapists, physical therapists, nurses, and | 6 |
| social workers. | 7 |
| Section 15. Reporting autism spectrum disorders. A | 8 |
| qualified professional who diagnoses any individual that | 9 |
| resides in the State with an autism spectrum disorder shall | 10 |
| report within 30 days the existence of an autism spectrum | 11 |
| disorder diagnosis along with all such additional information | 12 |
| as determined in rules promulgated pursuant to this Act. On or | 13 |
| before September 1, 2005, the Department of Human Services, | 14 |
| Department of Public Aid, and the State Board of Education | 15 |
| shall report the existence and content of data compiled by them | 16 |
| in the course of their duties pertaining to individuals with | 17 |
| autism spectrum disorders. The annual reports shall be filed on | 18 |
| January 1 of each year. The Director shall also promulgate | 19 |
| rules and procedures allowing for individuals with autism | 20 |
| spectrum disorder and their parents or guardians to voluntarily | 21 |
| report their own diagnosis and information. | 22 |
| Section 20. Reports; contents, filing, availability for | 23 |
| research and public inspection. | 24 |
| (a) The reports prescribed in Section 15 of this Act shall | 25 |
| be designated an autism spectrum disorder report and shall | 26 |
| contain information that the Director considers necessary to | 27 |
| identify, locate, and investigate the occurrence, frequency, | 28 |
| incidence, cause, effect, and prognosis of autism spectrum | 29 |
| disorder and other relevant data and findings. | 30 |
| (b) The Director shall promulgate rules regarding the form,
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| content, and manner of filing the report prescribed in Section | 32 |
| 15 of this Act, which shall be submitted to the Department | 33 |
| unless otherwise prescribed by the Director. Any rules | 34 |
| promulgated by the Director shall contain a specific provision |
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| guaranteeing the maintenance of the physician-patient | 2 |
| privilege and compliance with all provisions of the Genetic | 3 |
| Information Privacy Act.
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| (c) Autism spectrum disorder reports and data shall be | 5 |
| maintained by the Department in a manner suitable for use for | 6 |
| research purposes and shall be made available to persons as | 7 |
| prescribed in Section 25 of this Act. | 8 |
| (d) A report or other data relating to autism spectrum | 9 |
| disorder that discloses the identity of an individual that was | 10 |
| reported as having autism spectrum disorder shall be made | 11 |
| available only to persons that demonstrate a need for the | 12 |
| report or other data that is essential to health related | 13 |
| research. No report or data or portion of the data that | 14 |
| discloses the identity of the individual shall be made | 15 |
| available to the public. | 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 |
| Section 25. Contracts; Autism Spectrum Disorder Registry. | 20 |
| The Department may enter into contracts with individuals, | 21 |
| corporations, hospitals, universities, not-for-profit | 22 |
| corporations, governmental entities, or other organizations | 23 |
| whereby such individuals, organizations, or agencies agree to | 24 |
| provide assistance in the compilation of the Autism Spectrum | 25 |
| Disorder Registry or to conduct research on behalf of the | 26 |
| Department consistent with the purposes of this Act. The | 27 |
| Director shall adopt rules governing such contracts, which | 28 |
| shall include: (i) requirements for a written protocol | 29 |
| outlining the purpose and public benefit of the research; (ii) | 30 |
| the description, methods, and projected results of the | 31 |
| research; (iii) peer review by other scientists; (iv) the | 32 |
| methods and facilities to protect the confidentiality of the | 33 |
| data; and (v) the qualifications of the researcher proposing to | 34 |
| undertake the research. |
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| Section 30. Annual progress reports. The Department shall | 2 |
| annually report to the General Assembly beginning September 1, | 3 |
| 2005. Beginning January 1, 2006, the Department shall provide | 4 |
| annual progress reports to the Governor and the General | 5 |
| Assembly by January 1 of each year. The annual report shall | 6 |
| include information on the progress of the Autism Spectrum | 7 |
| Disorder Registry, as well as descriptions of any studies which | 8 |
| are underway or have been completed, including those performed | 9 |
| to determine the potential public health significance of an | 10 |
| increase in autism incidence, together with any findings and | 11 |
| recommendations. The annual report shall also include a list of | 12 |
| those persons, organizations, and agencies which have refused | 13 |
| to cooperate with the Department in the collection or | 14 |
| transmission of information under this Act. | 15 |
| Section 35. Implementation. The Director shall promulgate | 16 |
| rules to implement this Act which fosters the study, research, | 17 |
| diminution, and control of autism spectrum disorders in this | 18 |
| State. | 19 |
| Section 99. Effective date. This Act takes effect upon | 20 |
| becoming law.
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