Full Text of SB1105 101st General Assembly
SB1105sam001 101ST GENERAL ASSEMBLY | Sen. Dale A. Righter Filed: 4/5/2019
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| 1 | | AMENDMENT TO SENATE BILL 1105
| 2 | | AMENDMENT NO. ______. Amend Senate Bill 1105 by replacing | 3 | | everything after the enacting clause with the following:
| 4 | | "Section 5. The Pediatric Palliative Care Act is amended by | 5 | | changing Sections 5, 10, 15, 20, 25, 30, 35, 40, and 45 and by | 6 | | adding Section 37 as follows: | 7 | | (305 ILCS 60/5)
| 8 | | Sec. 5. Legislative findings. The General Assembly finds as | 9 | | follows: | 10 | | (1) Each year, approximately 1,500 1,185 Illinois | 11 | | children are diagnosed with a serious illness potentially | 12 | | life-limiting illness . | 13 | | (2) There are many barriers to the provision of | 14 | | pediatric palliative services, the most significant of | 15 | | which include the following: (i) challenges in predicting | 16 | | life expectancy; (ii) the reluctance of families and |
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| 1 | | professionals to acknowledge a child's incurable | 2 | | condition; and (iii) the lack of an appropriate, | 3 | | pediatric-focused reimbursement structure leading to | 4 | | insufficient community-based resources. | 5 | | (3) Community-based pediatric palliative services have | 6 | | been shown to keep children out of the hospital by managing | 7 | | many symptoms in the home setting, thereby improving | 8 | | childhood quality of life while maintaining budget | 9 | | neutrality. It is tremendously difficult for physicians to | 10 | | prognosticate pediatric life expectancy due to the | 11 | | resiliency of children. In addition, parents are rarely | 12 | | prepared to cease curative efforts in order to receive | 13 | | hospice or palliative care. Community-based pediatric | 14 | | palliative services, however, keep children out of the | 15 | | hospital by managing many symptoms in the home setting, | 16 | | thereby improving childhood quality of life while | 17 | | maintaining budget neutrality.
| 18 | | (4) Pediatric palliative programming can, and should, | 19 | | be administered in a cost neutral fashion. Community-based | 20 | | pediatric palliative care allows for children and families | 21 | | to receive pain and symptom management and psychosocial | 22 | | support in the comfort of the home setting, thereby | 23 | | avoiding excess spending for emergency room visits and | 24 | | certain hospitals. The National Hospice and Palliative | 25 | | Care Organization's pediatric task force reported during | 26 | | 2001 that the average cost per child per year, cared for |
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| 1 | | primarily at home, receiving comprehensive palliative and | 2 | | life prolonging services concurrently, is $16,177, | 3 | | significantly less than the $19,000 to $48,000 per child | 4 | | per year when palliative programs are not utilized.
| 5 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 6 | | (305 ILCS 60/10)
| 7 | | Sec. 10. Definitions Definition . In this Act : , | 8 | | "Department" means the Department of Healthcare and Family | 9 | | Services.
| 10 | | "Palliative care" means care focused on expert assessment | 11 | | and management of pain and other symptoms, assessment and | 12 | | support of caregiver needs, and coordination of care. | 13 | | Palliative care attends to the physical, functional, | 14 | | psychological, practical, and spiritual consequences of a | 15 | | serious illness. It is a person-centered and family-centered | 16 | | approach to care, providing people living with serious illness | 17 | | relief from the symptoms and stress of an illness. Through | 18 | | early integration into the care plan for the seriously ill, | 19 | | palliative care improves quality of life for the patient and | 20 | | the family. Palliative care can be offered in all care settings | 21 | | and at any stage in a serious illness through collaboration of | 22 | | many types of care providers. | 23 | | "Serious illness" means a health condition that carries a | 24 | | high risk of mortality and either negatively impacts a person's | 25 | | daily function or quality of life or excessively strains their |
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| 1 | | caregiver. | 2 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 3 | | (305 ILCS 60/15)
| 4 | | Sec. 15. Pediatric palliative care pilot program. The | 5 | | Department shall develop a pediatric palliative care pilot | 6 | | program under which a qualifying child as defined in Section 25 | 7 | | may receive community-based pediatric palliative care from a | 8 | | trained interdisciplinary team and may also choose to continue | 9 | | while continuing to pursue aggressive curative or | 10 | | disease-directed treatments for a serious potentially | 11 | | life-limiting illness under the benefits available under | 12 | | Article V of the Illinois Public Aid Code.
| 13 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 14 | | (305 ILCS 60/20)
| 15 | | Sec. 20. Federal waiver or State Plan amendment. If | 16 | | applicable, the The Department shall submit the necessary | 17 | | application to the federal Centers for Medicare and Medicaid | 18 | | Services for a waiver or State Plan amendment to implement the | 19 | | pilot program described in this Act. If the application is in | 20 | | the form of a State Plan amendment, the State Plan amendment | 21 | | shall be filed prior to December 31, 2010. If the Department | 22 | | does not submit a State Plan amendment prior to December 31, | 23 | | 2010, the pilot program shall be created utilizing a waiver | 24 | | authority. The waiver request shall be included in any |
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| 1 | | appropriate waiver application renewal submitted prior to | 2 | | December 31, 2011, or shall be submitted as an independent | 3 | | 1915(c) Home and Community Based Medicaid Waiver within that | 4 | | same time period. After federal approval is secured, the | 5 | | Department shall implement the waiver or State Plan amendment | 6 | | within 12 months of the date of approval. The Department shall | 7 | | not draft any rules in contravention of this timetable for | 8 | | program development and implementation. By federal | 9 | | requirement, the application for a 1915 (c) Medicaid waiver | 10 | | program must demonstrate cost neutrality per the formula laid | 11 | | out by the Centers for Medicare and Medicaid Services. The | 12 | | Department shall not draft any rules in contravention of this | 13 | | timetable for pilot program development and implementation. | 14 | | This pilot program shall be implemented only to the extent that | 15 | | federal financial participation is available.
| 16 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 17 | | (305 ILCS 60/25)
| 18 | | Sec. 25. Qualifying child. | 19 | | (a) For the purposes of this Act, a qualifying child is a | 20 | | person under 19 18 years of age who is enrolled in the medical | 21 | | assistance program under Article V of the Illinois Public Aid | 22 | | Code and suffers from a serious illness potentially | 23 | | life-limiting medical condition , as defined in subsection (b). | 24 | | A child who is enrolled in the pilot program prior to the age | 25 | | 19 18 may continue to receive services under the pilot program |
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| 1 | | until the day before his or her twenty-first birthday.
| 2 | | (b) The Department, in consultation with interested | 3 | | stakeholders, shall determine the serious illnesses | 4 | | potentially life-limiting medical conditions that render a | 5 | | pediatric medical assistance recipient eligible for the pilot | 6 | | program under this Act. Such serious illnesses medical | 7 | | conditions shall include, but need not be limited to, the | 8 | | following: | 9 | | (1) Cancer (i) for which there is no known effective | 10 | | treatment, (ii) that does not respond to conventional | 11 | | protocol, (iii) that has progressed to an advanced stage, | 12 | | or (iv) where toxicities or other complications limit | 13 | | prohibit the administration of curative therapies. | 14 | | (2) End-stage lung disease, including but not limited | 15 | | to cystic fibrosis, that results in dependence on | 16 | | technology, such as mechanical ventilation. | 17 | | (3) Severe neurological conditions, including, but not | 18 | | limited to, hypoxic ischemic encephalopathy, acute brain | 19 | | injury, brain infections and inflammatory diseases, or | 20 | | irreversible severe alteration of mental status, with one | 21 | | of the following co-morbidities: (i) intractable seizures | 22 | | or (ii) brainstem failure to control breathing or other | 23 | | automatic physiologic functions. | 24 | | (4) Degenerative neuromuscular conditions, including, | 25 | | but not limited to, spinal muscular atrophy, Type I or II, | 26 | | or Duchenne Muscular Dystrophy, requiring technological |
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| 1 | | support. | 2 | | (5) Genetic syndromes, such as Trisomy 13 or 18, where | 3 | | (i) it is more likely than not that the child will not live | 4 | | past 2 years of age or (ii) the child is severely | 5 | | compromised with no expectation of long-term survival. | 6 | | (6) Congenital or acquired end-stage heart disease, | 7 | | including but not limited to the following: (i) single | 8 | | ventricle disorders, including hypoplastic left heart | 9 | | syndrome; (ii) total anomalous pulmonary venous return, | 10 | | not suitable for curative surgical treatment; and (iii) | 11 | | heart muscle disorders (cardiomyopathies) without adequate | 12 | | medical or surgical treatments. | 13 | | (7) End-stage liver disease where (i) transplant is not | 14 | | a viable option or (ii) transplant rejection or failure has | 15 | | occurred. | 16 | | (8) End-stage kidney failure where (i) transplant is | 17 | | not a viable option or (ii) transplant rejection or failure | 18 | | has occurred. | 19 | | (9) Metabolic or biochemical disorders, including, but | 20 | | not limited to, mitochondrial disease, leukodystrophies, | 21 | | Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no | 22 | | suitable therapies exist or (ii) available treatments, | 23 | | including stem cell ("bone marrow") transplant, have | 24 | | failed. | 25 | | (10) Congenital or acquired diseases of the | 26 | | gastrointestinal system, such as "short bowel syndrome", |
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| 1 | | where (i) transplant is not a viable option or (ii) | 2 | | transplant rejection or failure has occurred. | 3 | | (11) Congenital skin disorders, including but not | 4 | | limited to epidermolysis bullosa, where no suitable | 5 | | treatment exists.
| 6 | | (12) Any other serious illness that the Department | 7 | | determines to be appropriate. | 8 | | The definition of a serious illness life-limiting medical | 9 | | condition shall not include a definitive time period due to the | 10 | | difficulty and challenges of prognosticating life expectancy | 11 | | in children.
| 12 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 13 | | (305 ILCS 60/30)
| 14 | | Sec. 30. Authorized providers. Providers authorized to | 15 | | deliver services under the pilot waiver program shall include | 16 | | licensed hospice agencies or home health agencies licensed to | 17 | | provide hospice care and will be subject to further criteria | 18 | | developed by the Department , in consultation with interested | 19 | | stakeholders, for provider participation. At a minimum, the | 20 | | participating provider must house a pediatric | 21 | | interdisciplinary team that includes : (i) a physician, acting | 22 | | as the program medical
director, who is board certified or | 23 | | board eligible in pediatrics or hospice and palliative | 24 | | medicine; (ii) a registered nurse; and (iii) a licensed social | 25 | | worker with a background in pediatric care a pediatric medical |
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| 1 | | director, a nurse, and a licensed social worker . All members of | 2 | | the pediatric interdisciplinary team must meet criteria the | 3 | | Department may establish by rule, including demonstrated | 4 | | expertise in pediatric palliative care. submit to the | 5 | | Department proof of pediatric End-of-Life Nursing Education | 6 | | Curriculum (Pediatric ELNEC Training) or an equivalent.
| 7 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 8 | | (305 ILCS 60/35)
| 9 | | Sec. 35. Interdisciplinary team; services. The Subject to | 10 | | federal approval for matching funds, the reimbursable services | 11 | | offered under the pilot program shall be provided by an | 12 | | interdisciplinary team, operating under the direction of a | 13 | | pediatric medical director, and shall include, but not be | 14 | | limited to, the following: | 15 | | (1) Pediatric nursing for pain and symptom management. | 16 | | (2) Expressive therapies (music or and art therapies) | 17 | | for age-appropriate counseling. | 18 | | (3) Client and family counseling (provided by a | 19 | | licensed social worker , licensed counselor, or | 20 | | non-denominational chaplain or spiritual counselor). | 21 | | (4) Respite care. | 22 | | (5) Bereavement services. | 23 | | (6) Case management.
| 24 | | (7) Any other services that the Department determines | 25 | | to be appropriate. |
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| 1 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 2 | | (305 ILCS 60/37 new) | 3 | | Sec. 37. Medicaid managed care organizations; technical | 4 | | assistance. The Department, in consultation with interested | 5 | | stakeholders, shall establish standards for and provide | 6 | | technical assistance to managed care organizations, as defined | 7 | | in Section 5-30.1 of the Illinois Public Aid Code, to ensure | 8 | | the delivery of pediatric palliative care services. | 9 | | (305 ILCS 60/40)
| 10 | | Sec. 40. Administration. | 11 | | (a) The Department shall oversee the administration of the | 12 | | pilot program. The Department, in consultation with interested | 13 | | stakeholders, shall determine the appropriate process for | 14 | | review of referrals and enrollment of qualifying participants. | 15 | | (b) The Department shall appoint an individual or entity to | 16 | | serve as case manager or an alternative position to assess | 17 | | level-of-care and target-population criteria for the pilot | 18 | | program. The Department shall ensure that the individual or | 19 | | entity meets the criteria for demonstrated expertise in | 20 | | pediatric palliative care that the Department, in consultation | 21 | | with interested stakeholders, may establish by rule receives | 22 | | pediatric End-of-Life Nursing Education Curriculum (Pediatric | 23 | | ELNEC Training) or an equivalent to become familiarized with | 24 | | the unique needs and difficulties facing this population . The |
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| 1 | | process for review of referrals and enrollment of qualifying | 2 | | participants shall not include unnecessary delays and shall | 3 | | reflect the fact that treatment of pain and other distressing | 4 | | symptoms represents an urgent need for children with a serious | 5 | | illness life-limiting medical conditions . The process shall | 6 | | also acknowledge that children with a serious illness | 7 | | life-limiting medical conditions and their families require | 8 | | holistic and seamless care.
| 9 | | (Source: P.A. 96-1078, eff. 7-16-10.) | 10 | | (305 ILCS 60/45)
| 11 | | Sec. 45. Report. Period of pilot program. After the program | 12 | | has been in place for 3 years, the Department shall prepare a | 13 | | report for the General Assembly concerning the program's | 14 | | outcomes effectiveness and shall also make recommendations for | 15 | | program improvement, including, but not limited to, the | 16 | | appropriateness of those serious illnesses that render a | 17 | | pediatric medical assistance receipt eligible for the program | 18 | | as defined in subsection (b) of Section 25 and the necessary | 19 | | services needed to ensure high-quality care for children and | 20 | | their families. | 21 | | (a) The program implemented under this Act shall be | 22 | | considered a pilot program for 3 years following the date of | 23 | | program implementation or, if the pilot program is created | 24 | | utilizing a waiver authority, until the waiver that includes | 25 | | the services provided under the program undergoes the federally |
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| 1 | | mandated renewal process. | 2 | | (b) During the period of time that the waiver program is | 3 | | considered a pilot program, pediatric palliative care shall be | 4 | | included in the issues reviewed by the Hospice and Palliative | 5 | | Care Advisory Board. The Board shall make recommendations | 6 | | regarding changes or improvements to the program, including but | 7 | | not limited to advisement on potential expansion of the | 8 | | potentially life-limiting medical conditions as defined in | 9 | | subsection (b) of Section 25. | 10 | | (c) At the end of the 3-year pilot program, the Department | 11 | | shall prepare a report for the General Assembly concerning the | 12 | | program's outcomes effectiveness and shall also make | 13 | | recommendations for program improvement, including, but not | 14 | | limited to, the appropriateness of the potentially | 15 | | life-limiting medical conditions as defined in subsection (b) | 16 | | of Section 25.
| 17 | | (Source: P.A. 96-1078, eff. 7-16-10.)
| 18 | | (305 ILCS 60/3 rep.) | 19 | | Section 10. The Pediatric Palliative Care Act is amended by | 20 | | repealing Section 3.".
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