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









 











HB2634

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1
 AN ACT concerning public aid.


2
 Be it enacted by the People of the State of Illinois,

3
represented in the General Assembly:



4
 Section 1. Short title. This Act may be cited as the 
5
Pediatric Palliative Care Act.

6
 Section 5. Legislative findings. The General Assembly 
7
finds as follows:
8
  (1) Each year, approximately 1,185 Illinois children 
9
 are diagnosed with a potentially life-limiting illness.
10
  (2) There are many barriers to the provision of 
11
 pediatric palliative services, the most significant of 
12
 which include the following: (i) challenges in predicting 
13
 life expectancy; (ii) the reluctance of families and 
14
 professionals to acknowledge a child's incurable 
15
 condition; and (iii) the lack of an appropriate, 
16
 pediatric-focused reimbursement structure leading to 
17
 insufficient community-based resources.
18
  (3) It is tremendously difficult for physicians to 
19
 prognosticate pediatric life expectancy due to the 
20
 resiliency of children. In addition, parents are rarely 
21
 prepared to cease curative efforts in order to receive 
22
 hospice or palliative care. Community-based pediatric 
23
 palliative services, however, keep children out of the 
 


 






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1
 hospital by managing many symptoms in the home setting, 
2
 thereby improving childhood quality of life while 
3
 maintaining budget neutrality.


4
 Section 10. Definition. In this Act, "Department" means the 
5
Department of Healthcare and Family Services.

6
 Section 15. Pediatric palliative care pilot program. The 
7
Department shall develop a pediatric palliative care pilot 
8
program under which a qualifying child as defined in Section 25 
9
may receive community-based pediatric palliative care from a 
10
trained interdisciplinary team while continuing to pursue 
11
aggressive curative treatments for a potentially life-limiting 
12
illness under the benefits available under Article V of the 
13
Illinois Public Aid Code. 

14
 Section 20. Federal waiver. The Department shall submit the 
15
necessary application to the federal Centers for Medicare and 
16
Medicaid Services for a waiver to implement the pilot program 
17
described in this Act. The waiver request shall be included in 
18
any appropriate waiver application renewal submitted within 12 
19
months after the effective date of this Act, or shall be 
20
submitted as an independent 1915(c) Home and Community Based 
21
Medicaid Waiver within that same time period. After federal 
22
approval is secured, the Department shall implement the pilot 
23
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 
2
extent that federal financial participation is available.

3
 Section 25. Qualifying child. 
4
 (a) For the purposes of this Act, a qualifying child is a 
5
person under 18 years of age who is enrolled in the medical 
6
assistance program under Article V of the Illinois Public Aid 
7
Code and suffers from a potentially life-limiting medical 
8
condition, as defined in subsection (b). A child who is 
9
enrolled in the pilot program prior to the age 18 may continue 
10
to receive services under the pilot program until the day 
11
before his or her twenty-first birthday.

12
 (b) The Department, in consultation with interested 
13
stakeholders, shall determine the potentially life-limiting 
14
medical conditions that render a pediatric medical assistance 
15
recipient eligible for the pilot program under this Act. Such 
16
medical conditions shall include, but need not be limited to, 
17
the following:
18
  (1) Cancer (i) for which there is no known effective 
19
 treatment, (ii) that does not respond to conventional 
20
 protocol, (iii) that has progressed to an advanced stage, 
21
 or (iv) where toxicities or other complications prohibit 
22
 the administration of curative therapies.
23
  (2) End-stage lung disease, including but not limited 
24
 to cystic fibrosis, that results in dependence on 
25
 technology, such as mechanical ventilation.
 


 






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  (3) Severe neurological conditions, including, but not 
2
 limited to, hypoxic ischemic encephalopathy, acute brain 
3
 injury, brain infections and inflammatory diseases, or 
4
 irreversible severe alteration of mental status, with one 
5
 of the following co-morbidities: (i) intractable seizures 
6
 or (ii) brainstem failure to control breathing or other 
7
 automatic physiologic functions.
8
  (4) Degenerative neuromuscular conditions, including, 
9
 but not limited to, spinal muscular atrophy, Type I or II, 
10
 or Duchenne Muscular Dystrophy, requiring technological 
11
 support.
12
  (5) Genetic syndromes, such as Trisomy 13 or 18, where 
13
 (i) it is more likely than not that the child will not live 
14
 past 2 years of age or (ii) the child is severely 
15
 compromised with no expectation of long-term survival.
16
  (6) Congenital or acquired end-stage heart disease, 
17
 including but not limited to the following: (i) single 
18
 ventricle disorders, including hypoplastic left heart 
19
 syndrome; (ii) total anomalous pulmonary venous return, 
20
 not suitable for curative surgical treatment; and (iii) 
21
 heart muscle disorders (cardiomyopathies) without adequate 
22
 medical or surgical treatments.
23
  (7) End-stage liver disease where (i) transplant is not 
24
 a viable option or (ii) transplant rejection or failure has 
25
 occurred.
26
  (8) End-stage kidney failure where (i) transplant is 
 


 






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 not a viable option or (ii) transplant rejection or failure 
2
 has occurred.
3
  (9) Metabolic or biochemical disorders, including, but 
4
 not limited to, mitochondrial disease, leukodystrophies, 
5
 Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no 
6
 suitable therapies exist or (ii) available treatments, 
7
 including stem cell ("bone marrow") transplant, have 
8
 failed.
9
  (10) Congenital or acquired diseases of the 
10
 gastrointestinal system, such as "short bowel syndrome", 
11
 where (i) transplant is not a viable option or (ii) 
12
 transplant rejection or failure has occurred.
13
  (11) Congenital skin disorders, including but not 
14
 limited to epidermolysis bullosa, where no suitable 
15
 treatment exists.

16
 The definition of a life-limiting medical condition shall 
17
not include a definitive time period due to the difficulty and 
18
challenges of prognosticating life expectancy in children. 

19
 Section 30. Authorized providers. Providers authorized to 
20
deliver services under the pilot program shall include licensed 
21
hospice programs or home health agencies licensed to provide 
22
hospice care and are subject to further criteria developed by 
23
the Department for provider participation. At a minimum, a 
24
participating provider must employ a pediatric-trained 
25
interdisciplinary team that includes a pediatric medical 
 


 






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director, a nurse, and a licensed social worker. All members of 
2
the pediatric interdisciplinary team must submit to the 
3
Department proof of pediatric End-of-Life Nursing Education 
4
Curriculum (Pediatric ELNEC) Training or an equivalent. 

5
 Section 35. Included counties. Services under the pilot 
6
program shall be made available in Illinois counties with 
7
licensed hospice programs that report and demonstrate, as 
8
described in Section 30, the ability to deliver the pediatric 
9
palliative services described in this Act. Without limiting the 
10
ability of licensed hospice programs in other counties to apply 
11
for participation in the pilot program, the following counties 
12
shall be included in the pilot program: Boone, Cass, Christian, 
13
Clark, Coles, Cook, Crawford, Cumberland, DeWitt, Douglas, 
14
DuPage, Edgar, Effingham, Fayette, Grundy, Jasper, Kane, 
15
Kankakee, Kendall, Logan, Macon, Mason, McHenry, Menard, 
16
Morgan, Moultrie, Ogle, Piatt, Sangamon, Shelby, Will, and 
17
Winnebago.

18
 Section 40. Interdisciplinary team; services. The 
19
reimbursable services offered under the pilot program shall be 
20
provided by an interdisciplinary team, operating under the 
21
direction of a pediatric medical director, and shall include, 
22
but not be limited to, the following:
23
  (1) Pediatric nursing for pain and symptom management.
24
  (2) Expressive therapies (music and art therapies) for 
 


 






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 age-appropriate counseling.
2
  (3) Client and family counseling (provided by a 
3
 licensed social worker or non-denominational chaplain or 
4
 spiritual counselor).
5
  (4) Respite care.
6
  (5) Bereavement services.
7
  (6) Case management.

8
 Section 45. Administration. 
9
 (a) The Department shall oversee the administration of the 
10
pilot program. The Department, in consultation with interested 
11
stakeholders, shall determine the appropriate process for 
12
review of referrals and enrollment of qualifying participants.
13
 (b) The Department shall appoint an individual to serve as 
14
case manager or an alternative position to assess level-of-care 
15
and target-population criteria for the pilot program. The 
16
Department shall ensure that the individual receives pediatric 
17
End-of-Life Nursing Education Curriculum (Pediatric ELNEC) 
18
Training or an equivalent to become familiarized with the 
19
unique needs and difficulties facing this population. The 
20
process for review of referrals and enrollment of qualifying 
21
participants shall not include unnecessary delays and shall 
22
reflect the fact that treatment of pain and other distressing 
23
symptoms represents an urgent need for children with 
24
life-limiting medical conditions. The process shall also 
25
acknowledge that children with life-limiting medical 
 


 






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conditions and their families require holistic and seamless 
2
care.


3
 Section 50. Period of pilot program. 
4
 (a) The program implemented under this Act shall be 
5
considered a pilot program for 3 years following the date of 
6
program implementation or until the waiver that includes the 
7
services provided under the program undergoes the federally 
8
mandated renewal process.
9
 (b) During the period of time that the program is 
10
considered a pilot program, pediatric palliative care shall be 
11
included in the issues reviewed by the Hospice and Palliative 
12
Care Advisory Board. The Board shall make recommendations 
13
regarding changes or improvements to the program, including but 
14
not limited to advice on potential expansion of the potentially 
15
life-limiting medical conditions as defined in subsection (b) 
16
of Section 25.
17
 (c) At the end of the 3-year pilot program, the Department 
18
shall submit a report to the General Assembly concerning the 
19
program's outcomes effectiveness and shall also make 
20
recommendations for program improvement, including, but not 
21
limited to, the appropriateness of the potentially 
22
life-limiting medical conditions as defined in subsection (b) 
23
of Section 25.

24
 Section 55. Effect on medical assistance program. 
 


 






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 (a) Nothing in this Act shall be construed so as to result 
2
in the elimination or reduction of any benefits or services 
3
covered under the medical assistance program under Article V of 
4
the Illinois Public Aid Code.
5
 (b) This Act does not affect an individual's eligibility to 
6
receive, concurrently with the benefits provided for in this 
7
Act, any services, including home health services, for which 
8
the individual would have been eligible in the absence of this 
9
Act.


10
 Section 90. The Hospice Program Licensing Act is amended by 
11
changing Section 15 as follows:

12
 (210 ILCS 60/15)
13
 Sec. 15. Hospice and Palliative Care Advisory Board.
14
 (a) The Director shall appoint a Hospice and Palliative 
15
Care Advisory Board ("the Board") to consult with the 
16
Department as provided in this Section. The membership of the 
17
Board shall be as follows:
18
  (1) The Director, ex officio, who shall be a nonvoting 
19
 member and shall serve as chairman of the Board.
20
  (2) One representative of each of the following State 
21
 agencies, each of whom shall be a nonvoting member: the 
22
 Department of
Healthcare and Family Services, the 
23
 Department of Human Services, and the Department on Aging.
24
  (3) One member who is a physician licensed to
practice 
 


 






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 medicine in all its branches, selected from the 
2
 recommendations of a statewide professional society 
3
 representing physicians licensed to practice medicine in 
4
 all its branches in all specialties.
5
  (4) One member who is a registered nurse,
selected from 
6
 the recommendations of professional nursing associations.
7
  (5) Four members selected from the
recommendations of 
8
 organizations whose primary membership consists of hospice 
9
 programs.
10
  (6) Two members who represent the general
public and 
11
 who have no responsibility for management or formation of 
12
 policy of a hospice program and no financial interest in a 
13
 hospice program.
14
  (7) One member selected from the
recommendations of 
15
 consumer organizations that engage in advocacy or legal 
16
 representation on behalf of hospice patients and their 
17
 immediate families.
18
 (b) Of the initial appointees, 4 shall serve for terms of 2 
19
years, 4 shall serve for terms of 3 years, and 5 shall serve 
20
for terms of 4 years, as determined by lot at the first meeting 
21
of the Board. Each successor member shall be appointed for a 
22
term of 4 years. A member appointed to fill a vacancy before 
23
the expiration of the term for which his or her predecessor was 
24
appointed shall be appointed to serve for the remainder of that 
25
term.
26
 (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 
2
request of 4 or more Board members, the chairman shall call a 
3
meeting of the Board. A Board member may designate a 
4
replacement to serve at a Board meeting in place of the member 
5
by submitting a letter stating that designation to the chairman 
6
before or at the Board meeting. The replacement member must 
7
represent the same general interests as the member being 
8
replaced, as described in paragraphs (1) through (7) of 
9
subsection (a).
10
 (d) Board members are entitled to reimbursement for their 
11
actual expenses incurred in performing their duties.
12
 (e) The Board shall advise the Department on all aspects of 
13
the Department's responsibilities under this Act, including 
14
the format and content of any rules adopted by the Department 
15
on or after the effective date of this amendatory Act of the 
16
95th General Assembly. Any such rule or amendment to a rule 
17
proposed on or after the effective date of this amendatory Act 
18
of the 95th General Assembly, except an emergency rule adopted 
19
pursuant to Section 5-45 of the Illinois Administrative 
20
Procedure Act, that is adopted without obtaining the advice of 
21
the Board is null and void. If the Department fails to follow 
22
the advice of the Board with respect to a proposed rule or 
23
amendment to a rule, the Department shall, before adopting the 
24
rule or amendment to a rule, transmit a written explanation of 
25
the reason for its action to the Board. During its review of 
26
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 
2
advice with respect to a proposed rule or amendment to a rule, 
3
fails to advise the Department within 90 days, the proposed 
4
rule or amendment shall be considered to have been acted upon 
5
by the Board.


6
 (f) The Board shall also review pediatric palliative care 
7
issues as provided in the Pediatric Palliative Care Act. 
8
(Source: P.A. 95-133, eff. 1-1-08.)


9
 Section 99. Effective date. This Act takes effect upon 
10
becoming law.