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92_HB2284ham001
LRB9207141LDpram02
1 AMENDMENT TO HOUSE BILL 2284
2 AMENDMENT NO. . Amend House Bill 2284 on page 1, by
3 inserting the following after line 5:
4 "Section 5. Policy declaration. The General Assembly
5 finds that epilepsy is a devastating health condition that
6 afflicts 2,300,000 United States citizens, over 125,000 of
7 whom reside in Illinois. The General Assembly also finds
8 that epilepsy afflicts its victims at all ages, but is
9 particularly devastating to children and the elderly. It is
10 the opinion of General Assembly that epilepsy can cause
11 serious financial, social, and emotional hardships on the
12 victims and their families of such a major consequence that
13 it is essential for the State to develop and implement
14 policies, plans, programs, and services to alleviate such
15 hardships.
16 It is the intent of the General Assembly through
17 implementation of this Act to establish a program for the
18 conduct of education and research regarding the cause, cure,
19 and treatment of both the physiologic and psychosocial
20 aspects of epilepsy. Additionally, it is the intent of the
21 General Assembly, through the establishment of regional
22 epilepsy centers and a comprehensive, statewide system of
23 regional and community-based services, to provide for the
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1 identification, evaluation, diagnosis, referral, and
2 treatment of victims of such health problems.
3 Section 10. Definitions. As used in this Act:
4 "Epilepsy" means a disorder characterized by
5 recurring attacks of motor, sensory, or psychic
6 malfunction with or without unconsciousness or convulsive
7 movements.
8 "Regional epilepsy center" means a postsecondary
9 higher educational institution having:
10 (1) a medical school in affiliation with a
11 medical center;
12 (2) an established education and outreach
13 initiative to provide assistance to both children
14 and adults with epilepsy; and
15 (3) full-time educators, advance practice
16 nurses, epileptologists treating both children and
17 adults, social workers, psychologists, and
18 researchers involved in exploring both the
19 pathophysiologic and psycho-social aspects of
20 epilepsy.
21 "Primary epilepsy provider" means a licensed
22 hospital, a medical center under the supervision of a
23 physician licensed to practice medicine in all of its
24 branches, or a medical center that provides medical
25 consultation, evaluation, referral, and treatment to
26 persons who may be or who have been diagnosed as victims
27 of epilepsy.
28 "Epilepsy Advisory Committee" or "Advisory
29 Committee" or "Committee" means the Epilepsy Disease
30 Advisory Committee created under Section 20 of this Act.
31 "Department" means the Illinois Department of Public
32 Health.
33 "Director" means the Director of Public Health.
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1 Section 15. Development of standards for a service
2 network; designation of regional centers and primary
3 providers. By January 1, 2002, the Department, in
4 consultation with the Advisory Committee, shall develop
5 standards for the conduct of research and for the
6 identification, evaluation, diagnosis, referral, and
7 treatment of victims of epilepsy and their families through
8 the regional centers. The standards shall include the
9 following:
10 (a) A description of the specific populations and
11 geographic areas to be served.
12 (b) Standards, criteria, and procedures for
13 designation of the Regional Centers that will ensure the
14 provision of quality care to a broad segment of the
15 population through on-site facilities and services
16 available within the service area defined by the
17 Department. At least one regional center shall be
18 conveniently located to serve the Chicago metropolitan
19 area and at least one regional center shall be
20 conveniently located to serve the balance of the State.
21 The regional centers shall provide at least the
22 following:
23 (1) Comprehensive diagnosis and treatment
24 facilities and services that have (i) professional
25 medical staff specifically trained in neurology and
26 the detection, diagnosis, and treatment of epilepsy,
27 (ii) sufficient support staff who are trained as
28 caregivers to victims of epilepsy,
29 (iii) appropriate and adequate equipment necessary
30 for diagnosis and treatment, (iv) transportation
31 services necessary for outreach to the service area
32 defined by the Department and for assuring access of
33 patients to available services, and (v) such other
34 support services, staff, and equipment as may be
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1 required;
2 (2) Consultation and referral services for
3 victims and their families to ensure informed
4 consent to treatment and to assist them in obtaining
5 necessary assistance and support services through
6 primary epilepsy providers and various private and
7 public agencies that may otherwise be available to
8 provide services under this Act;
9 (3) Research programs and facilities to assist
10 faculty and students in discovering the cause of and
11 diagnosis, cure, and treatment of epilepsy;
12 (4) Training, consultation, and continuing
13 education for caregivers, including families of
14 those who are affected by epilepsy;
15 (5) Centralized data collection, processing,
16 and storage that will serve as a clearinghouse of
17 information to assist victims and families and to
18 facilitate research;
19 (6) Programs of scientific and medical
20 research in relation to epilepsy that are designed
21 and conducted in a manner that may enable the center
22 to qualify for federal financial participation in
23 the cost of such programs.
24 Section 20. Epilepsy Advisory Committee. There is
25 created the Epilepsy Advisory Committee consisting of the
26 Director or his or her designee, who shall serve as a
27 non-voting member and who shall be the chairman of the
28 Committee and 11 voting members appointed by the Director.
29 The appointed members shall include persons who are
30 experienced in research and the delivery of services to
31 victims of epilepsy and their families. Such members shall
32 include 4 physicians licensed to practice medicine in all of
33 its branches experienced in the diagnosis and treatment of
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1 epilepsy, at least 3 of whom shall be physicians who are
2 board certified in neurology; one representative of a
3 postsecondary educational institution that administers or is
4 affiliated with a medical center in the State, one
5 representative of a licensed hospital, one nurse, one social
6 worker, one representative of an organization established
7 under the Illinois Insurance Code for the purpose of
8 providing health insurance, and 2 victims of epilepsy or
9 members of their families.
10 Each member appointed by the Director shall serve for a
11 term of 2 years and until his or her successor is appointed
12 and qualified. Members of the Committee shall not be
13 compensated, but shall be reimbursed for expenses actually
14 incurred in the performance of their duties. No more than 7
15 members may be of the same political party.
16 Vacancies shall be filled in the same manner as original
17 appointments.
18 Section 25. Regional Epilepsy Center grants-in-aid.
19 Pursuant to appropriations made by the General Assembly, the
20 Department shall provide grants-in-aid to regional epilepsy
21 centers for necessary research and for the development and
22 maintenance of services for victims of epilepsy and their
23 families. The Department shall adopt rules and procedures
24 governing the distribution and specific purposes of such
25 grants.".