Illinois General Assembly - Full Text of SB1583
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Full Text of SB1583  96th General Assembly



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1     AN ACT concerning public aid.
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 Pediatric Palliative Care Act.
6     Section 5. Legislative findings. The General Assembly
7 finds as follows:
8         (1) Each year, approximately 1,185 Illinois children
9     are diagnosed with a potentially life-limiting illness.
10         (2) There are many barriers to the provision of
11     pediatric palliative services, the most significant of
12     which include the following: (i) challenges in predicting
13     life expectancy; (ii) the reluctance of families and
14     professionals to acknowledge a child's incurable
15     condition; and (iii) the lack of an appropriate,
16     pediatric-focused reimbursement structure leading to
17     insufficient community-based resources.
18         (3) It is tremendously difficult for physicians to
19     prognosticate pediatric life expectancy due to the
20     resiliency of children. In addition, parents are rarely
21     prepared to cease curative efforts in order to receive
22     hospice or palliative care. Community-based pediatric
23     palliative services, however, keep children out of the



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1     hospital by managing many symptoms in the home setting,
2     thereby improving childhood quality of life while
3     maintaining budget neutrality.
4     Section 10. Definition. In this Act, "Department" means the
5 Department of Healthcare and Family Services.
6     Section 15. Pediatric palliative care pilot program. The
7 Department shall develop a pediatric palliative care pilot
8 program under which a qualifying child as defined in Section 25
9 may receive community-based pediatric palliative care from a
10 trained interdisciplinary team while continuing to pursue
11 aggressive curative treatments for a potentially life-limiting
12 illness under the benefits available under Article V of the
13 Illinois Public Aid Code.
14     Section 20. Federal waiver. The Department shall submit the
15 necessary application to the federal Centers for Medicare and
16 Medicaid Services for a waiver or State Plan amendment to
17 implement the pilot program described in this Act. The waiver
18 request shall be included in any appropriate waiver application
19 renewal submitted within 12 months after the effective date of
20 this Act, or shall be submitted as an independent 1915(c) Home
21 and Community Based Medicaid Waiver within that same time
22 period. If the application is in the form of a State Plan
23 amendment, the State Plan amendment shall be filed within 12



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1 months after the effective date of this Act. After federal
2 approval is secured, the Department shall implement the pilot
3 program under the waiver within 12 months after the date of
4 approval. The pilot program shall be implemented only to the
5 extent that federal financial participation is available.
6     Section 25. Qualifying child.
7     (a) For the purposes of this Act, a qualifying child is a
8 person under 18 years of age who is enrolled in the medical
9 assistance program under Article V of the Illinois Public Aid
10 Code and suffers from a potentially life-limiting medical
11 condition, as defined in subsection (b). A child who is
12 enrolled in the pilot program prior to the age 18 may continue
13 to receive services under the pilot program until the day
14 before his or her twenty-first birthday.
15     (b) The Department, in consultation with interested
16 stakeholders, shall determine the potentially life-limiting
17 medical conditions that render a pediatric medical assistance
18 recipient eligible for the pilot program under this Act. Such
19 medical conditions shall include, but need not be limited to,
20 the following:
21         (1) Cancer (i) for which there is no known effective
22     treatment, (ii) that does not respond to conventional
23     protocol, (iii) that has progressed to an advanced stage,
24     or (iv) where toxicities or other complications prohibit
25     the administration of curative therapies.



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1         (2) End-stage lung disease, including but not limited
2     to cystic fibrosis, that results in dependence on
3     technology, such as mechanical ventilation.
4         (3) Severe neurological conditions, including, but not
5     limited to, hypoxic ischemic encephalopathy, acute brain
6     injury, brain infections and inflammatory diseases, or
7     irreversible severe alteration of mental status, with one
8     of the following co-morbidities: (i) intractable seizures
9     or (ii) brainstem failure to control breathing or other
10     automatic physiologic functions.
11         (4) Degenerative neuromuscular conditions, including,
12     but not limited to, spinal muscular atrophy, Type I or II,
13     or Duchenne Muscular Dystrophy, requiring technological
14     support.
15         (5) Genetic syndromes, such as Trisomy 13 or 18, where
16     (i) it is more likely than not that the child will not live
17     past 2 years of age or (ii) the child is severely
18     compromised with no expectation of long-term survival.
19         (6) Congenital or acquired end-stage heart disease,
20     including but not limited to the following: (i) single
21     ventricle disorders, including hypoplastic left heart
22     syndrome; (ii) total anomalous pulmonary venous return,
23     not suitable for curative surgical treatment; and (iii)
24     heart muscle disorders (cardiomyopathies) without adequate
25     medical or surgical treatments.
26         (7) End-stage liver disease where (i) transplant is not



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1     a viable option or (ii) transplant rejection or failure has
2     occurred.
3         (8) End-stage kidney failure where (i) transplant is
4     not a viable option or (ii) transplant rejection or failure
5     has occurred.
6         (9) Metabolic or biochemical disorders, including, but
7     not limited to, mitochondrial disease, leukodystrophies,
8     Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no
9     suitable therapies exist or (ii) available treatments,
10     including stem cell ("bone marrow") transplant, have
11     failed.
12         (10) Congenital or acquired diseases of the
13     gastrointestinal system, such as "short bowel syndrome",
14     where (i) transplant is not a viable option or (ii)
15     transplant rejection or failure has occurred.
16         (11) Congenital skin disorders, including but not
17     limited to epidermolysis bullosa, where no suitable
18     treatment exists.
19     The definition of a life-limiting medical condition shall
20 not include a definitive time period due to the difficulty and
21 challenges of prognosticating life expectancy in children.
22     Section 30. Authorized providers. Providers authorized to
23 deliver services under the pilot program shall include licensed
24 hospice programs or home health agencies licensed to provide
25 hospice care and are subject to further criteria developed by



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1 the Department for provider participation. At a minimum, a
2 participating provider must employ a pediatric-trained
3 interdisciplinary team that includes a pediatric medical
4 director, a nurse, and a licensed social worker. All members of
5 the pediatric interdisciplinary team must submit to the
6 Department proof of pediatric End-of-Life Nursing Education
7 Curriculum (Pediatric ELNEC) Training or an equivalent.
8     Section 35. Included counties. Services under the pilot
9 program shall be made available in Illinois counties with
10 licensed hospice programs that report and demonstrate, as
11 described in Section 30, the ability to deliver the pediatric
12 palliative services described in this Act. Without limiting the
13 ability of licensed hospice programs in other counties to apply
14 for participation in the pilot program, the following counties
15 shall be included in the pilot program: Boone, Cass, Christian,
16 Clark, Coles, Cook, Crawford, Cumberland, DeWitt, Douglas,
17 DuPage, Edgar, Effingham, Fayette, Grundy, Jasper, Kane,
18 Kankakee, Kendall, Logan, Macon, Mason, McHenry, Menard,
19 Morgan, Moultrie, Ogle, Piatt, Sangamon, Shelby, Will, and
20 Winnebago.
21     Section 40. Interdisciplinary team; services. The
22 reimbursable services offered under the pilot program shall be
23 provided by an interdisciplinary team, operating under the
24 direction of a pediatric medical director, and shall include,



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1 but not be limited to, the following:
2         (1) Pediatric nursing for pain and symptom management.
3         (2) Expressive therapies (music and art therapies) for
4     age-appropriate counseling.
5         (3) Client and family counseling (provided by a
6     licensed social worker or non-denominational chaplain or
7     spiritual counselor).
8         (4) Respite care.
9         (5) Bereavement services.
10         (6) Case management.
11     Section 45. Administration.
12     (a) The Department shall oversee the administration of the
13 pilot program. The Department, in consultation with interested
14 stakeholders, shall determine the appropriate process for
15 review of referrals and enrollment of qualifying participants.
16     (b) The Department shall appoint an individual to serve as
17 case manager or an alternative position to assess level-of-care
18 and target-population criteria for the pilot program. The
19 Department shall ensure that the individual receives pediatric
20 End-of-Life Nursing Education Curriculum (Pediatric ELNEC)
21 Training or an equivalent to become familiarized with the
22 unique needs and difficulties facing this population. The
23 process for review of referrals and enrollment of qualifying
24 participants shall not include unnecessary delays and shall
25 reflect the fact that treatment of pain and other distressing



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1 symptoms represents an urgent need for children with
2 life-limiting medical conditions. The process shall also
3 acknowledge that children with life-limiting medical
4 conditions and their families require holistic and seamless
5 care.
6     Section 50. Period of pilot program.
7     (a) The program implemented under this Act shall be
8 considered a pilot program for 3 years following the date of
9 program implementation or until the waiver that includes the
10 services provided under the program undergoes the federally
11 mandated renewal process.
12     (b) During the period of time that the program is
13 considered a pilot program, pediatric palliative care shall be
14 included in the issues reviewed by the Hospice and Palliative
15 Care Advisory Board. The Board shall make recommendations
16 regarding changes or improvements to the program, including but
17 not limited to advice on potential expansion of the potentially
18 life-limiting medical conditions as defined in subsection (b)
19 of Section 25.
20     (c) At the end of the 3-year pilot program, the Department
21 shall submit a report to the General Assembly concerning the
22 program's outcomes effectiveness and shall also make
23 recommendations for program improvement, including, but not
24 limited to, the appropriateness of the potentially
25 life-limiting medical conditions as defined in subsection (b)



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1 of Section 25.
2     Section 55. Effect on medical assistance program.
3     (a) Nothing in this Act shall be construed so as to result
4 in the elimination or reduction of any benefits or services
5 covered under the medical assistance program under Article V of
6 the Illinois Public Aid Code.
7     (b) This Act does not affect an individual's eligibility to
8 receive, concurrently with the benefits provided for in this
9 Act, any services, including home health services, for which
10 the individual would have been eligible in the absence of this
11 Act.
12     Section 90. The Hospice Program Licensing Act is amended by
13 changing Section 15 as follows:
14     (210 ILCS 60/15)
15     Sec. 15. Hospice and Palliative Care Advisory Board.
16     (a) The Director shall appoint a Hospice and Palliative
17 Care Advisory Board ("the Board") to consult with the
18 Department as provided in this Section. The membership of the
19 Board shall be as follows:
20         (1) The Director, ex officio, who shall be a nonvoting
21     member and shall serve as chairman of the Board.
22         (2) One representative of each of the following State
23     agencies, each of whom shall be a nonvoting member: the



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1     Department of Healthcare and Family Services, the
2     Department of Human Services, and the Department on Aging.
3         (3) One member who is a physician licensed to practice
4     medicine in all its branches, selected from the
5     recommendations of a statewide professional society
6     representing physicians licensed to practice medicine in
7     all its branches in all specialties.
8         (4) One member who is a registered nurse, selected from
9     the recommendations of professional nursing associations.
10         (5) Four members selected from the recommendations of
11     organizations whose primary membership consists of hospice
12     programs.
13         (6) Two members who represent the general public and
14     who have no responsibility for management or formation of
15     policy of a hospice program and no financial interest in a
16     hospice program.
17         (7) One member selected from the recommendations of
18     consumer organizations that engage in advocacy or legal
19     representation on behalf of hospice patients and their
20     immediate families.
21     (b) Of the initial appointees, 4 shall serve for terms of 2
22 years, 4 shall serve for terms of 3 years, and 5 shall serve
23 for terms of 4 years, as determined by lot at the first meeting
24 of the Board. Each successor member shall be appointed for a
25 term of 4 years. A member appointed to fill a vacancy before
26 the expiration of the term for which his or her predecessor was



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1 appointed shall be appointed to serve for the remainder of that
2 term.
3     (c) The Board shall meet as frequently as the chairman
4 deems necessary, but not less than 4 times each year. Upon the
5 request of 4 or more Board members, the chairman shall call a
6 meeting of the Board. A Board member may designate a
7 replacement to serve at a Board meeting in place of the member
8 by submitting a letter stating that designation to the chairman
9 before or at the Board meeting. The replacement member must
10 represent the same general interests as the member being
11 replaced, as described in paragraphs (1) through (7) of
12 subsection (a).
13     (d) Board members are entitled to reimbursement for their
14 actual expenses incurred in performing their duties.
15     (e) The Board shall advise the Department on all aspects of
16 the Department's responsibilities under this Act, including
17 the format and content of any rules adopted by the Department
18 on or after the effective date of this amendatory Act of the
19 95th General Assembly. Any such rule or amendment to a rule
20 proposed on or after the effective date of this amendatory Act
21 of the 95th General Assembly, except an emergency rule adopted
22 pursuant to Section 5-45 of the Illinois Administrative
23 Procedure Act, that is adopted without obtaining the advice of
24 the Board is null and void. If the Department fails to follow
25 the advice of the Board with respect to a proposed rule or
26 amendment to a rule, the Department shall, before adopting the



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1 rule or amendment to a rule, transmit a written explanation of
2 the reason for its action to the Board. During its review of
3 rules, the Board shall analyze the economic and regulatory
4 impact of those rules. If the Board, having been asked for its
5 advice with respect to a proposed rule or amendment to a rule,
6 fails to advise the Department within 90 days, the proposed
7 rule or amendment shall be considered to have been acted upon
8 by the Board.
9     (f) The Board shall also review pediatric palliative care
10 issues as provided in the Pediatric Palliative Care Act.
11 (Source: P.A. 95-133, eff. 1-1-08.)
12     Section 99. Effective date. This Act takes effect upon
13 becoming law.