State of Illinois
92nd General Assembly
Legislation

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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.

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