Bill Amendment: IL SB1105 | 2019-2020 | 101st General Assembly
NOTE: For additional amemendments please see the Bill Drafting List
Bill Title: DHFS-PEDIATRIC PALLIATIVE CARE
Status: 2021-01-13 - Session Sine Die [SB1105 Detail]
Download: Illinois-2019-SB1105-Senate_Amendment_001.html
Bill Title: DHFS-PEDIATRIC PALLIATIVE CARE
Status: 2021-01-13 - Session Sine Die [SB1105 Detail]
Download: Illinois-2019-SB1105-Senate_Amendment_001.html
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1 | AMENDMENT TO SENATE BILL 1105
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2 | AMENDMENT NO. ______. Amend Senate Bill 1105 by replacing | ||||||
3 | everything after the enacting clause with the following:
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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:
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7 | (305 ILCS 60/5)
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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.
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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.
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5 | (Source: P.A. 96-1078, eff. 7-16-10.)
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6 | (305 ILCS 60/10)
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7 | Sec. 10. Definitions Definition . In this Act : , | ||||||
8 | "Department" means the Department of Healthcare and Family | ||||||
9 | Services.
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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.)
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3 | (305 ILCS 60/15)
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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.
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13 | (Source: P.A. 96-1078, eff. 7-16-10.)
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14 | (305 ILCS 60/20)
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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.
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16 | (Source: P.A. 96-1078, eff. 7-16-10.)
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17 | (305 ILCS 60/25)
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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.
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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.
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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.
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12 | (Source: P.A. 96-1078, eff. 7-16-10.)
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13 | (305 ILCS 60/30)
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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.
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7 | (Source: P.A. 96-1078, eff. 7-16-10.)
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8 | (305 ILCS 60/35)
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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.
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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.)
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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.
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9 | (305 ILCS 60/40)
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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.
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9 | (Source: P.A. 96-1078, eff. 7-16-10.)
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10 | (305 ILCS 60/45)
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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.
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17 | (Source: P.A. 96-1078, eff. 7-16-10.)
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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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