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1    AN ACT concerning government.
 
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
 
4    Section 5. The Pediatric Palliative Care Act is amended by
5changing Sections 5, 10, 15, 20, 25, 30, 35, 40, and 45 and by
6adding Section 37 as follows:
 
7    (305 ILCS 60/5)
8    Sec. 5. Legislative findings. The General Assembly finds as
9follows:
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
17    professionals to acknowledge a child's incurable
18    condition; and (iii) the lack of an appropriate,
19    pediatric-focused reimbursement structure leading to
20    insufficient community-based resources.
21        (3) Community-based pediatric palliative services have
22    been shown to keep children out of the hospital by managing
23    many symptoms in the home setting, thereby improving

 

 

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1    childhood quality of life while maintaining budget
2    neutrality. It is tremendously difficult for physicians to
3    prognosticate pediatric life expectancy due to the
4    resiliency of children. In addition, parents are rarely
5    prepared to cease curative efforts in order to receive
6    hospice or palliative care. Community-based pediatric
7    palliative services, however, keep children out of the
8    hospital by managing many symptoms in the home setting,
9    thereby improving childhood quality of life while
10    maintaining budget neutrality.
11        (4) Pediatric palliative programming can, and should,
12    be administered in a cost neutral fashion. Community-based
13    pediatric palliative care allows for children and families
14    to receive pain and symptom management and psychosocial
15    support in the comfort of the home setting, thereby
16    avoiding excess spending for emergency room visits and
17    certain hospitals. The National Hospice and Palliative
18    Care Organization's pediatric task force reported during
19    2001 that the average cost per child per year, cared for
20    primarily at home, receiving comprehensive palliative and
21    life prolonging services concurrently, is $16,177,
22    significantly less than the $19,000 to $48,000 per child
23    per year when palliative programs are not utilized.
24(Source: P.A. 96-1078, eff. 7-16-10.)
 
25    (305 ILCS 60/10)

 

 

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1    Sec. 10. Definitions Definition. In this Act: ,
2    "Department" means the Department of Healthcare and Family
3Services.
4    "Palliative care" means care focused on expert assessment
5and management of pain and other symptoms, assessment and
6support of caregiver needs, and coordination of care.
7Palliative care attends to the physical, functional,
8psychological, practical, and spiritual consequences of a
9serious illness. It is a person-centered and family-centered
10approach to care, providing people living with serious illness
11relief from the symptoms and stress of an illness. Through
12early integration into the care plan for the seriously ill,
13palliative care improves quality of life for the patient and
14the family. Palliative care can be offered in all care settings
15and at any stage in a serious illness through collaboration of
16many types of care providers.
17    "Serious illness" means a health condition that carries a
18high risk of mortality and either negatively impacts a person's
19daily function or quality of life or excessively strains their
20caregiver.
21(Source: P.A. 96-1078, eff. 7-16-10.)
 
22    (305 ILCS 60/15)
23    Sec. 15. Pediatric palliative care pilot program. The
24Department shall develop a pediatric palliative care pilot
25program under which a qualifying child as defined in Section 25

 

 

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1may receive community-based pediatric palliative care from a
2trained interdisciplinary team and may also choose to continue
3while continuing to pursue aggressive curative or
4disease-directed treatments for a serious potentially
5life-limiting illness under the benefits available under
6Article V of the Illinois Public Aid Code.
7(Source: P.A. 96-1078, eff. 7-16-10.)
 
8    (305 ILCS 60/20)
9    Sec. 20. Federal waiver or State Plan amendment. If
10applicable, the The Department shall submit the necessary
11application to the federal Centers for Medicare and Medicaid
12Services for a waiver or State Plan amendment to implement the
13pilot program described in this Act. If the application is in
14the form of a State Plan amendment, the State Plan amendment
15shall be filed prior to December 31, 2010. If the Department
16does not submit a State Plan amendment prior to December 31,
172010, the pilot program shall be created utilizing a waiver
18authority. The waiver request shall be included in any
19appropriate waiver application renewal submitted prior to
20December 31, 2011, or shall be submitted as an independent
211915(c) Home and Community Based Medicaid Waiver within that
22same time period. After federal approval is secured, the
23Department shall implement the waiver or State Plan amendment
24within 12 months of the date of approval. The Department shall
25not draft any rules in contravention of this timetable for

 

 

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1program development and implementation. By federal
2requirement, the application for a 1915 (c) Medicaid waiver
3program must demonstrate cost neutrality per the formula laid
4out by the Centers for Medicare and Medicaid Services. The
5Department shall not draft any rules in contravention of this
6timetable for pilot program development and implementation.
7This pilot program shall be implemented only to the extent that
8federal financial participation is available.
9(Source: P.A. 96-1078, eff. 7-16-10.)
 
10    (305 ILCS 60/25)
11    Sec. 25. Qualifying child.
12    (a) For the purposes of this Act, a qualifying child is a
13person under 19 18 years of age who is enrolled in the medical
14assistance program under Article V of the Illinois Public Aid
15Code and suffers from a serious illness potentially
16life-limiting medical condition, as defined in subsection (b).
17A child who is enrolled in the pilot program prior to the age
1819 18 may continue to receive services under the pilot program
19until the day before his or her twenty-first birthday.
20    (b) The Department, in consultation with interested
21stakeholders, shall determine the serious illnesses
22potentially life-limiting medical conditions that render a
23pediatric medical assistance recipient eligible for the pilot
24program under this Act. Such serious illnesses medical
25conditions shall include, but need not be limited to, the

 

 

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1following:
2        (1) Cancer (i) for which there is no known effective
3    treatment, (ii) that does not respond to conventional
4    protocol, (iii) that has progressed to an advanced stage,
5    or (iv) where toxicities or other complications limit
6    prohibit the administration of curative therapies.
7        (2) End-stage lung disease, including but not limited
8    to cystic fibrosis, that results in dependence on
9    technology, such as mechanical ventilation.
10        (3) Severe neurological conditions, including, but not
11    limited to, hypoxic ischemic encephalopathy, acute brain
12    injury, brain infections and inflammatory diseases, or
13    irreversible severe alteration of mental status, with one
14    of the following co-morbidities: (i) intractable seizures
15    or (ii) brainstem failure to control breathing or other
16    automatic physiologic functions.
17        (4) Degenerative neuromuscular conditions, including,
18    but not limited to, spinal muscular atrophy, Type I or II,
19    or Duchenne Muscular Dystrophy, requiring technological
20    support.
21        (5) Genetic syndromes, such as Trisomy 13 or 18, where
22    (i) it is more likely than not that the child will not live
23    past 2 years of age or (ii) the child is severely
24    compromised with no expectation of long-term survival.
25        (6) Congenital or acquired end-stage heart disease,
26    including but not limited to the following: (i) single

 

 

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1    ventricle disorders, including hypoplastic left heart
2    syndrome; (ii) total anomalous pulmonary venous return,
3    not suitable for curative surgical treatment; and (iii)
4    heart muscle disorders (cardiomyopathies) without adequate
5    medical or surgical treatments.
6        (7) End-stage liver disease where (i) transplant is not
7    a viable option or (ii) transplant rejection or failure has
8    occurred.
9        (8) End-stage kidney failure where (i) transplant is
10    not a viable option or (ii) transplant rejection or failure
11    has occurred.
12        (9) Metabolic or biochemical disorders, including, but
13    not limited to, mitochondrial disease, leukodystrophies,
14    Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no
15    suitable therapies exist or (ii) available treatments,
16    including stem cell ("bone marrow") transplant, have
17    failed.
18        (10) Congenital or acquired diseases of the
19    gastrointestinal system, such as "short bowel syndrome",
20    where (i) transplant is not a viable option or (ii)
21    transplant rejection or failure has occurred.
22        (11) Congenital skin disorders, including but not
23    limited to epidermolysis bullosa, where no suitable
24    treatment exists.
25        (12) Any other serious illness that the Department
26    determines to be appropriate.

 

 

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1    The definition of a serious illness life-limiting medical
2condition shall not include a definitive time period due to the
3difficulty and challenges of prognosticating life expectancy
4in children.
5(Source: P.A. 96-1078, eff. 7-16-10.)
 
6    (305 ILCS 60/30)
7    Sec. 30. Authorized providers. Providers authorized to
8deliver services under the pilot waiver program shall include
9licensed hospice agencies or home health agencies licensed to
10provide hospice care and will be subject to further criteria
11developed by the Department, in consultation with interested
12stakeholders, for provider participation. At a minimum, the
13participating provider must house a pediatric
14interdisciplinary team that includes: (i) a physician, acting
15as the program medical director, who is board certified or
16board eligible in pediatrics or hospice and palliative
17medicine; (ii) a registered nurse; and (iii) a licensed social
18worker with a background in pediatric care a pediatric medical
19director, a nurse, and a licensed social worker. All members of
20the pediatric interdisciplinary team must meet criteria the
21Department may establish by rule, including demonstrated
22expertise in pediatric palliative care. submit to the
23Department proof of pediatric End-of-Life Nursing Education
24Curriculum (Pediatric ELNEC Training) or an equivalent.
25(Source: P.A. 96-1078, eff. 7-16-10.)
 

 

 

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1    (305 ILCS 60/35)
2    Sec. 35. Interdisciplinary team; services. The Subject to
3federal approval for matching funds, the reimbursable services
4offered under the pilot program shall be provided by an
5interdisciplinary team, operating under the direction of a
6pediatric medical director, and shall include, but not be
7limited to, the following:
8        (1) Pediatric nursing for pain and symptom management.
9        (2) Expressive therapies (music or and art therapies)
10    for age-appropriate counseling.
11        (3) Client and family counseling (provided by a
12    licensed social worker, licensed counselor, or
13    non-denominational chaplain or spiritual counselor).
14        (4) Respite care.
15        (5) Bereavement services.
16        (6) Case management.
17        (7) Any other services that the Department determines
18    to be appropriate.
19(Source: P.A. 96-1078, eff. 7-16-10.)
 
20    (305 ILCS 60/37 new)
21    Sec. 37. Medicaid managed care organizations; technical
22assistance. The Department, in consultation with interested
23stakeholders, shall establish standards for and provide
24technical assistance to managed care organizations, as defined

 

 

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1in Section 5-30.1 of the Illinois Public Aid Code, to ensure
2the delivery of pediatric palliative care services.
 
3    (305 ILCS 60/40)
4    Sec. 40. Administration.
5    (a) The Department shall oversee the administration of the
6pilot program. The Department, in consultation with interested
7stakeholders, shall determine the appropriate process for
8review of referrals and enrollment of qualifying participants.
9    (b) The Department shall appoint an individual or entity to
10serve as case manager or an alternative position to assess
11level-of-care and target-population criteria for the pilot
12program. The Department shall ensure that the individual or
13entity meets the criteria for demonstrated expertise in
14pediatric palliative care that the Department, in consultation
15with interested stakeholders, may establish by rule receives
16pediatric End-of-Life Nursing Education Curriculum (Pediatric
17ELNEC Training) or an equivalent to become familiarized with
18the unique needs and difficulties facing this population. The
19process for review of referrals and enrollment of qualifying
20participants shall not include unnecessary delays and shall
21reflect the fact that treatment of pain and other distressing
22symptoms represents an urgent need for children with a serious
23illness life-limiting medical conditions. The process shall
24also acknowledge that children with a serious illness
25life-limiting medical conditions and their families require

 

 

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1holistic and seamless care.
2(Source: P.A. 96-1078, eff. 7-16-10.)
 
3    (305 ILCS 60/45)
4    Sec. 45. Report. Period of pilot program. After the program
5has been in place for 3 years, the Department shall prepare a
6report for the General Assembly concerning the program's
7outcomes effectiveness and shall also make recommendations for
8program improvement, including, but not limited to, the
9appropriateness of those serious illnesses that render a
10pediatric medical assistance recipient eligible for the
11program as defined in subsection (b) of Section 25 and the
12necessary services needed to ensure high-quality care for
13children and their families.
14    (a) The program implemented under this Act shall be
15considered a pilot program for 3 years following the date of
16program implementation or, if the pilot program is created
17utilizing a waiver authority, until the waiver that includes
18the services provided under the program undergoes the federally
19mandated renewal process.
20    (b) During the period of time that the waiver program is
21considered a pilot program, pediatric palliative care shall be
22included in the issues reviewed by the Hospice and Palliative
23Care Advisory Board. The Board shall make recommendations
24regarding changes or improvements to the program, including but
25not limited to advisement on potential expansion of the

 

 

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1potentially life-limiting medical conditions as defined in
2subsection (b) of Section 25.
3    (c) At the end of the 3-year pilot program, the Department
4shall prepare a report for the General Assembly concerning the
5program's outcomes effectiveness and shall also make
6recommendations for program improvement, including, but not
7limited to, the appropriateness of the potentially
8life-limiting medical conditions as defined in subsection (b)
9of Section 25.
10(Source: P.A. 96-1078, eff. 7-16-10.)
 
11    (305 ILCS 60/3 rep.)
12    Section 10. The Pediatric Palliative Care Act is amended by
13repealing Section 3.