Full Text of SB1583 96th General Assembly
SB1583enr 96TH GENERAL ASSEMBLY
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| AN ACT concerning public aid.
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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 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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| hospital by managing many symptoms in the home setting, | 2 |
| thereby improving childhood quality of life while | 3 |
| maintaining budget neutrality.
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| 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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| 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.
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| (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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| (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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| 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.
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| 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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| 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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| 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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| 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.
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| 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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| 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.
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| 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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| 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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| 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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| 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.
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| (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.)
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| Section 99. Effective date. This Act takes effect upon | 13 |
| becoming law.
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