Illinois General Assembly - Full Text of Public Act 096-1078
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Public Act 096-1078




Public Act 096-1078
SB2931 EnrolledLRB096 17757 KTG 35199 b

    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
    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.
    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 or State Plan amendment. 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. 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
    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.
        (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
        (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
        (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
        (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 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 for provider participation. At a
minimum, the participating provider must house a pediatric
interdisciplinary team that includes a pediatric medical
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. Interdisciplinary team; services. 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 and art therapies) for
    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 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
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 conditions and their families require holistic and
seamless care.
    Section 45. 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, 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
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.
    Section 50. Effect on medical assistance program.
    (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
    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
    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
        (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
    (c) The Board shall meet as frequently as the chairman
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
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.

Effective Date: 7/16/2010