Bill Text: IL SB1105 | 2019-2020 | 101st General Assembly | Engrossed

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Bill Title: Amends the Pediatric Palliative Care Act. Repeals a provision that made the Act inoperative on and after July 1, 2012. Makes changes to the legislative findings. Provides that the General Assembly finds that each year, approximately 1,500 (rather than 1,185) Illinois children are diagnosed with a serious illness (rather than with a potentially life-limiting illness); and that community-based pediatric palliative services have been shown to keep children out of the hospital by managing many symptoms in the home setting, thereby improving childhood quality of life while maintaining budget neutrality. Requires the Department of Healthcare and Family Services to develop a pediatric palliative care program (rather than a pediatric palliative care pilot program) under which a qualifying child may receive community-based pediatric palliative care from a trained interdisciplinary team and may also choose to continue to pursue aggressive curative or disease-directed treatments for a serious (rather than a potentially life-limiting) illness under the benefits available under Article V of the Illinois Public Aid Code. Defines a qualifying child to be a person under the age of 19 (rather than 18) who is enrolled in the medical assistance program under the Illinois Public Aid Code and who suffers from a serious illness (rather than a potentially life-limiting medical condition). Requires the Department to apply to the federal Centers for Medicare and Medicaid Services for a State Plan amendment to implement the program. Requires the Department to implement the State plan amendment within 12 months of the date of federal approval. Prohibits the Department from drafting any rules in contravention of this timetable for program development and implementation. Removes all provisions concerning application for a federal Medicaid waiver program authorized under the Social Security Act. Expands the list of serious illnesses (rather than medical conditions) that render a person eligible for pediatric palliative care to include any other serious illness that the Department determines to be appropriate. In a provision concerning authorized providers, provides that at a minimum, a participating provider must house a pediatric interdisciplinary team that includes: (i) a physician, acting as the program medical director, who is board certified or board eligible in pediatrics or hospice and palliative medicine; (ii) a registered nurse; and (iii) a licensed social worker with a background in pediatric care. Requires all members of the pediatric interdisciplinary team to meet criteria the Department may establish by rule, including demonstrated expertise in pediatric palliative care (rather than requiring all members of the pediatric interdisciplinary team to submit to the Department proof of pediatric End-of-Life Nursing Education Curriculum (Pediatric ELNEC Training) or an equivalent). Expands the list of reimbursable services offered under the program to include any other services that the Department determines to be appropriate. Requires the Department, in consultation with interested stakeholders, to establish standards for and provide technical assistance to managed care organizations, as defined in the Illinois Public Aid Code, to ensure the delivery of pediatric palliative care services. Contains provisions concerning reporting requirements and criteria a case manager must meet for demonstrated expertise in pediatric palliative care.

Spectrum: Slight Partisan Bill (Republican 6-3)

Status: (Failed) 2021-01-13 - Session Sine Die [SB1105 Detail]

Download: Illinois-2019-SB1105-Engrossed.html

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AN ACT concerning government.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 5. The Pediatric Palliative Care Act is amended by
changing Sections 5, 10, 15, 20, 25, 30, 35, 40, and 45 and by
adding Section 37 as follows:
(305 ILCS 60/5)
Sec. 5. Legislative findings. The General Assembly finds as
follows:
(1) Each year, approximately 1,500 1,185 Illinois
children are diagnosed with a serious illness potentially
life-limiting illness.
(2) There are many barriers to the provision of
pediatric palliative services, the most significant of
which include the following: (i) challenges in predicting
life expectancy; (ii) the reluctance of families and
professionals to acknowledge a child's incurable
condition; and (iii) the lack of an appropriate,
pediatric-focused reimbursement structure leading to
insufficient community-based resources.
(3) Community-based pediatric palliative services have
been shown to keep children out of the hospital by managing
many symptoms in the home setting, thereby improving

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

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

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may receive community-based pediatric palliative care from a
trained interdisciplinary team and may also choose to continue
while continuing to pursue aggressive curative or
disease-directed treatments for a serious potentially
life-limiting illness under the benefits available under
Article V of the Illinois Public Aid Code.
(Source: P.A. 96-1078, eff. 7-16-10.)
(305 ILCS 60/20)
Sec. 20. Federal waiver or State Plan amendment. If
applicable, the The Department shall submit the necessary
application to the federal Centers for Medicare and Medicaid
Services for a waiver or State Plan amendment to implement the
pilot program described in this Act. If the application is in
the form of a State Plan amendment, the State Plan amendment
shall be filed prior to December 31, 2010. If the Department
does not submit a State Plan amendment prior to December 31,
2010, the pilot program shall be created utilizing a waiver
authority. The waiver request shall be included in any
appropriate waiver application renewal submitted prior to
December 31, 2011, or shall be submitted as an independent
1915(c) Home and Community Based Medicaid Waiver within that
same time period. After federal approval is secured, the
Department shall implement the waiver or State Plan amendment
within 12 months of the date of approval. The Department shall
not draft any rules in contravention of this timetable for

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

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

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

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

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

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

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

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potentially life-limiting medical conditions as defined in
subsection (b) of Section 25.
(c) At the end of the 3-year pilot program, the Department
shall prepare a report for the General Assembly concerning the
program's outcomes effectiveness and shall also make
recommendations for program improvement, including, but not
limited to, the appropriateness of the potentially
life-limiting medical conditions as defined in subsection (b)
of Section 25.
(Source: P.A. 96-1078, eff. 7-16-10.)