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92_HB2284eng HB2284 Engrossed LRB9207141DJgc 1 AN ACT in relation to 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 may be cited as the 5 Epilepsy Disease Assistance Act. 6 Section 5. Policy declaration. The General Assembly 7 finds that epilepsy is a devastating health condition that 8 afflicts 2,300,000 United States citizens, over 125,000 of 9 whom reside in Illinois. The General Assembly also finds 10 that epilepsy afflicts its victims at all ages, but is 11 particularly devastating to children and the elderly. It is 12 the opinion of the General Assembly that epilepsy can cause 13 serious financial, social, and emotional hardships on the 14 victims and their families of such a major consequence that 15 it is essential for the State to develop and implement 16 policies, plans, programs, and services to alleviate such 17 hardships. 18 It is the intent of the General Assembly through 19 implementation of this Act to establish a program for the 20 conduct of education and research regarding the cause, cure, 21 and treatment of both the physiologic and psychosocial 22 aspects of epilepsy. Additionally, it is the intent of the 23 General Assembly, through the establishment of regional 24 epilepsy centers and a comprehensive, statewide system of 25 regional and community-based services, to provide for the 26 identification, evaluation, diagnosis, referral, and 27 treatment of victims of such health problems. 28 Section 10. Definitions. As used in this Act: 29 "Epilepsy" means a disorder characterized by 30 recurring attacks of motor, sensory, or psychic HB2284 Engrossed -2- LRB9207141DJgc 1 malfunction with or without unconsciousness or convulsive 2 movements. 3 "Regional epilepsy center" means a postsecondary 4 higher educational institution having: 5 (1) a medical school in affiliation with a 6 medical center; 7 (2) an established education and outreach 8 initiative to provide assistance to both children 9 and adults with epilepsy; and 10 (3) physicians licensed to practice medicine in 11 all of its branches, full-time educators, nurses, 12 epileptologists treating both children and adults, 13 social workers, psychologists, and researchers 14 involved in exploring both the pathophysiologic and 15 psycho-social aspects of epilepsy. 16 "Primary epilepsy provider" means a licensed 17 hospital, a medical center under the supervision of a 18 physician licensed to practice medicine in all of its 19 branches, a physician licensed to practice medicine in 20 all of its branches, or a medical center that provides 21 medical consultation, evaluation, referral, and treatment 22 to persons who may be or who have been diagnosed as 23 victims of epilepsy. 24 "Epilepsy Advisory Committee" or "Advisory 25 Committee" or "Committee" means the Epilepsy Disease 26 Advisory Committee created under Section 20 of this Act. 27 "Department" means the Illinois Department of Public 28 Health. 29 "Director" means the Director of Public Health. 30 Section 15. Development of standards for a service 31 network; designation of regional centers and primary 32 providers. By January 1, 2002, the Department, in 33 consultation with the Advisory Committee, shall develop HB2284 Engrossed -3- LRB9207141DJgc 1 standards for the conduct of research and for the 2 identification, evaluation, diagnosis, referral, and 3 treatment of victims of epilepsy and their families through 4 the regional centers. The standards shall include the 5 following: 6 (a) A description of the specific populations and 7 geographic areas to be served. 8 (b) Standards, criteria, and procedures for 9 designation of the Regional Centers that will ensure the 10 provision of quality care to a broad segment of the 11 population through on-site facilities and services 12 available within the service area defined by the 13 Department. At least one regional center shall be 14 conveniently located to serve the Chicago metropolitan 15 area and at least one regional center shall be 16 conveniently located to serve the balance of the State. 17 The regional centers shall provide at least the 18 following: 19 (1) Comprehensive diagnosis and treatment 20 facilities and services that have (i) professional 21 medical staff specifically trained in neurology and 22 the detection, diagnosis, and treatment of epilepsy, 23 (ii) sufficient support staff who are trained as 24 caregivers to victims of epilepsy, 25 (iii) appropriate and adequate equipment necessary 26 for diagnosis and treatment, (iv) transportation 27 services necessary for outreach to the service area 28 defined by the Department and for assuring access of 29 patients to available services, and (v) such other 30 support services, staff, and equipment as may be 31 required; 32 (2) Consultation and referral services for 33 victims and their families to ensure informed 34 consent to treatment and to assist them in obtaining HB2284 Engrossed -4- LRB9207141DJgc 1 necessary assistance and support services through 2 primary epilepsy providers and various private and 3 public agencies that may otherwise be available to 4 provide services under this Act; 5 (3) Research programs and facilities to assist 6 faculty and students in discovering the cause of and 7 diagnosis, cure, and treatment of epilepsy; 8 (4) Training, consultation, and continuing 9 education for caregivers, including families of 10 those who are affected by epilepsy; 11 (5) Centralized data collection, processing, 12 and storage that will serve as a clearinghouse of 13 information to assist victims and families and to 14 facilitate research; 15 (6) Programs of scientific and medical 16 research in relation to epilepsy that are designed 17 and conducted in a manner that may enable the center 18 to qualify for federal financial participation in 19 the cost of such programs. 20 Section 20. Epilepsy Advisory Committee. There is 21 created the Epilepsy Advisory Committee consisting of the 22 Director or his or her designee, who shall serve as a 23 non-voting member and who shall be the chairman of the 24 Committee and 11 voting members appointed by the Director. 25 The appointed members shall include persons who are 26 experienced in research and the delivery of services to 27 victims of epilepsy and their families. Such members shall 28 include 4 physicians licensed to practice medicine in all of 29 its branches experienced in the diagnosis and treatment of 30 epilepsy, at least 3 of whom shall be physicians who are 31 board certified in neurology; one representative of a 32 postsecondary educational institution that administers or is 33 affiliated with a medical center in the State, one HB2284 Engrossed -5- LRB9207141DJgc 1 representative of a licensed hospital, one nurse, one social 2 worker, one representative of an organization established 3 under the Illinois Insurance Code for the purpose of 4 providing health insurance, and 2 victims of epilepsy or 5 members of their families. 6 Each member appointed by the Director shall serve for a 7 term of 2 years and until his or her successor is appointed 8 and qualified. Members of the Committee shall not be 9 compensated, but shall be reimbursed for expenses actually 10 incurred in the performance of their duties. No more than 7 11 members may be of the same political party. 12 Vacancies shall be filled in the same manner as original 13 appointments. 14 Section 25. Regional Epilepsy Center grants-in-aid. 15 Pursuant to appropriations made by the General Assembly, the 16 Department shall provide grants-in-aid to regional epilepsy 17 centers for necessary research and for the development and 18 maintenance of services for victims of epilepsy and their 19 families. The Department shall adopt rules and procedures 20 governing the distribution and specific purposes of such 21 grants.