Bill Text: IL HB2634 | 2009-2010 | 96th General Assembly | Introduced

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Bill Title: Creates the Pediatric Palliative Care Act and amends the Hospice Program Licensing Act. Provides that the Department of Healthcare and Family Services shall develop a pediatric palliative care pilot program under which a qualifying child may receive community-based pediatric palliative care from a trained interdisciplinary team while continuing to pursue aggressive curative treatments for a potentially life-limiting medical condition under the benefits available under the Medicaid program. Provides that the Department shall apply for a federal waiver to conduct the program. Provides that a "qualifying child" for the pilot program is a child under the age of 18 years who is enrolled in the Medicaid program and suffers from a potentially life-limiting medical condition. Sets forth certain counties to be included in the pilot program. Requires a report to the General Assembly at the end of the 3-year pilot period. Provides for the review of pediatric palliative care issues by the Hospice and Palliative Care Advisory Board. Effective immediately.

Spectrum: Slight Partisan Bill (Democrat 3-1)

Status: (Introduced - Dead) 2009-04-03 - Rule 19(a) / Re-referred to Rules Committee [HB2634 Detail]

Download: Illinois-2009-HB2634-Introduced.html

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96TH GENERAL ASSEMBLY State of Illinois 2009 and 2010 HB2634 Introduced 2/20/2009, by Rep. Julie Hamos SYNOPSIS AS INTRODUCED:
New Act
210 ILCS 60/15
Creates the Pediatric Palliative Care Act. Provides that the Department of Healthcare and Family Services shall develop a pediatric palliative care pilot program under which a qualifying child may receive community-based pediatric palliative care from a trained interdisciplinary team while continuing to pursue aggressive curative treatments for a potentially life-limiting medical condition under the benefits available under the Medicaid program. Provides that the Department shall apply for a federal waiver to conduct the program. Provides that a "qualifying child" for the pilot program is a child under the age of 18 years who is enrolled in the Medicaid program and suffers from a potentially life-limiting medical condition. Sets forth certain counties to be included in the pilot program. Requires a report to the General Assembly at the end of the 3-year pilot period. Effective immediately.
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FISCAL NOTE ACT MAY APPLY
A BILL FOR
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AN ACT concerning public aid.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 1. Short title. This Act may be cited as the
Pediatric Palliative Care Act.
Section 5. Legislative findings. The General Assembly
finds as follows:
(1) Each year, approximately 1,185 Illinois children
are diagnosed with a 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) 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

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hospital by managing many symptoms in the home setting,
thereby improving childhood quality of life while
maintaining budget neutrality.
Section 10. Definition. In this Act, "Department" means the
Department of Healthcare and Family Services.
Section 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
may receive community-based pediatric palliative care from a
trained interdisciplinary team while continuing to pursue
aggressive curative treatments for a potentially life-limiting
illness under the benefits available under Article V of the
Illinois Public Aid Code.
Section 20. Federal waiver. The Department shall submit the
necessary application to the federal Centers for Medicare and
Medicaid Services for a waiver to implement the pilot program
described in this Act. The waiver request shall be included in
any appropriate waiver application renewal submitted within 12
months after the effective date of this Act, 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 pilot
program under the waiver within 12 months after the date of

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approval. The pilot program shall be implemented only to the
extent that federal financial participation is available.
Section 25. Qualifying child.
(a) For the purposes of this Act, a qualifying child is a
person under 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 potentially life-limiting medical
condition, as defined in subsection (b). A child who is
enrolled in the pilot program prior to the age 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 potentially life-limiting
medical conditions that render a pediatric medical assistance
recipient eligible for the pilot program under this Act. Such
medical conditions shall include, but need not be limited to,
the 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 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.

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(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
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

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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.
The definition of a life-limiting medical condition shall
not include a definitive time period due to the difficulty and
challenges of prognosticating life expectancy in children.
Section 30. Authorized providers. Providers authorized to
deliver services under the pilot program shall include licensed
hospice programs or home health agencies licensed to provide
hospice care and are subject to further criteria developed by
the Department for provider participation. At a minimum, a
participating provider must employ a pediatric-trained
interdisciplinary team that includes a pediatric medical

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director, a nurse, and a licensed social worker. All members of
the pediatric interdisciplinary team must submit to the
Department proof of pediatric End-of-Life Nursing Education
Curriculum (Pediatric ELNEC) Training or an equivalent.
Section 35. Included counties. Services under the pilot
program shall be made available in Illinois counties with
licensed hospice programs that report and demonstrate, as
described in Section 30, the ability to deliver the pediatric
palliative services described in this Act. Without limiting the
ability of licensed hospice programs in other counties to apply
for participation in the pilot program, the following counties
shall be included in the pilot program: Boone, Cass, Christian,
Clark, Coles, Cook, Crawford, Cumberland, DeWitt, Douglas,
DuPage, Edgar, Effingham, Fayette, Grundy, Jasper, Kane,
Kankakee, Kendall, Logan, Macon, Mason, McHenry, Menard,
Morgan, Moultrie, Ogle, Piatt, Sangamon, Shelby, Will, and
Winnebago.
Section 40. Interdisciplinary team; services. 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 and art therapies) for

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age-appropriate counseling.
(3) Client and family counseling (provided by a
licensed social worker or non-denominational chaplain or
spiritual counselor).
(4) Respite care.
(5) Bereavement services.
(6) Case management.
Section 45. 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 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 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
life-limiting medical conditions. The process shall also
acknowledge that children with life-limiting medical

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conditions and their families require holistic and seamless
care.
Section 50. Period of pilot program.
(a) The program implemented under this Act shall be
considered a pilot program for 3 years following the date of
program implementation or 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 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 advice on potential expansion of the 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 submit a report to 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.
Section 55. Effect on medical assistance program.

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(a) Nothing in this Act shall be construed so as to result
in the elimination or reduction of any benefits or services
covered under the medical assistance program under Article V of
the Illinois Public Aid Code.
(b) This Act does not affect an individual's eligibility to
receive, concurrently with the benefits provided for in this
Act, any services, including home health services, for which
the individual would have been eligible in the absence of this
Act.
Section 90. The Hospice Program Licensing Act is amended by
changing Section 15 as follows:
(210 ILCS 60/15)
Sec. 15. Hospice and Palliative Care Advisory Board.
(a) The Director shall appoint a Hospice and Palliative
Care Advisory Board ("the Board") to consult with the
Department as provided in this Section. The membership of the
Board shall be as follows:
(1) The Director, ex officio, who shall be a nonvoting
member and shall serve as chairman of the Board.
(2) One representative of each of the following State
agencies, each of whom shall be a nonvoting member: the
Department of Healthcare and Family Services, the
Department of Human Services, and the Department on Aging.
(3) One member who is a physician licensed to practice

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medicine in all its branches, selected from the
recommendations of a statewide professional society
representing physicians licensed to practice medicine in
all its branches in all specialties.
(4) One member who is a registered nurse, selected from
the recommendations of professional nursing associations.
(5) Four members selected from the recommendations of
organizations whose primary membership consists of hospice
programs.
(6) Two members who represent the general public and
who have no responsibility for management or formation of
policy of a hospice program and no financial interest in a
hospice program.
(7) One member selected from the recommendations of
consumer organizations that engage in advocacy or legal
representation on behalf of hospice patients and their
immediate families.
(b) Of the initial appointees, 4 shall serve for terms of 2
years, 4 shall serve for terms of 3 years, and 5 shall serve
for terms of 4 years, as determined by lot at the first meeting
of the Board. Each successor member shall be appointed for a
term of 4 years. A member appointed to fill a vacancy before
the expiration of the term for which his or her predecessor was
appointed shall be appointed to serve for the remainder of that
term.
(c) The Board shall meet as frequently as the chairman

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deems necessary, but not less than 4 times each year. Upon the
request of 4 or more Board members, the chairman shall call a
meeting of the Board. A Board member may designate a
replacement to serve at a Board meeting in place of the member
by submitting a letter stating that designation to the chairman
before or at the Board meeting. The replacement member must
represent the same general interests as the member being
replaced, as described in paragraphs (1) through (7) of
subsection (a).
(d) Board members are entitled to reimbursement for their
actual expenses incurred in performing their duties.
(e) The Board shall advise the Department on all aspects of
the Department's responsibilities under this Act, including
the format and content of any rules adopted by the Department
on or after the effective date of this amendatory Act of the
95th General Assembly. Any such rule or amendment to a rule
proposed on or after the effective date of this amendatory Act
of the 95th General Assembly, except an emergency rule adopted
pursuant to Section 5-45 of the Illinois Administrative
Procedure Act, that is adopted without obtaining the advice of
the Board is null and void. If the Department fails to follow
the advice of the Board with respect to a proposed rule or
amendment to a rule, the Department shall, before adopting the
rule or amendment to a rule, transmit a written explanation of
the reason for its action to the Board. During its review of
rules, the Board shall analyze the economic and regulatory

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impact of those rules. If the Board, having been asked for its
advice with respect to a proposed rule or amendment to a rule,
fails to advise the Department within 90 days, the proposed
rule or amendment shall be considered to have been acted upon
by the Board.
(f) The Board shall also review pediatric palliative care
issues as provided in the Pediatric Palliative Care Act.
(Source: P.A. 95-133, eff. 1-1-08.)
Section 99. Effective date. This Act takes effect upon
becoming law.