Sen. Dale A. Righter

Filed: 4/5/2019

 

 


 

 


 
10100SB1105sam001LRB101 06383 KTG 59330 a

1
AMENDMENT TO SENATE BILL 1105

2    AMENDMENT NO. ______. Amend Senate Bill 1105 by replacing
3everything after the enacting clause with the following:
 
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

 

 

10100SB1105sam001- 2 -LRB101 06383 KTG 59330 a

1    professionals to acknowledge a child's incurable
2    condition; and (iii) the lack of an appropriate,
3    pediatric-focused reimbursement structure leading to
4    insufficient community-based resources.
5        (3) Community-based pediatric palliative services have
6    been shown to keep children out of the hospital by managing
7    many symptoms in the home setting, thereby improving
8    childhood quality of life while maintaining budget
9    neutrality. It is tremendously difficult for physicians to
10    prognosticate pediatric life expectancy due to the
11    resiliency of children. In addition, parents are rarely
12    prepared to cease curative efforts in order to receive
13    hospice or palliative care. Community-based pediatric
14    palliative services, however, keep children out of the
15    hospital by managing many symptoms in the home setting,
16    thereby improving childhood quality of life while
17    maintaining budget neutrality.
18        (4) Pediatric palliative programming can, and should,
19    be administered in a cost neutral fashion. Community-based
20    pediatric palliative care allows for children and families
21    to receive pain and symptom management and psychosocial
22    support in the comfort of the home setting, thereby
23    avoiding excess spending for emergency room visits and
24    certain hospitals. The National Hospice and Palliative
25    Care Organization's pediatric task force reported during
26    2001 that the average cost per child per year, cared for

 

 

10100SB1105sam001- 3 -LRB101 06383 KTG 59330 a

1    primarily at home, receiving comprehensive palliative and
2    life prolonging services concurrently, is $16,177,
3    significantly less than the $19,000 to $48,000 per child
4    per year when palliative programs are not utilized.
5(Source: P.A. 96-1078, eff. 7-16-10.)
 
6    (305 ILCS 60/10)
7    Sec. 10. Definitions Definition. In this Act: ,
8    "Department" means the Department of Healthcare and Family
9Services.
10    "Palliative care" means care focused on expert assessment
11and management of pain and other symptoms, assessment and
12support of caregiver needs, and coordination of care.
13Palliative care attends to the physical, functional,
14psychological, practical, and spiritual consequences of a
15serious illness. It is a person-centered and family-centered
16approach to care, providing people living with serious illness
17relief from the symptoms and stress of an illness. Through
18early integration into the care plan for the seriously ill,
19palliative care improves quality of life for the patient and
20the family. Palliative care can be offered in all care settings
21and at any stage in a serious illness through collaboration of
22many types of care providers.
23    "Serious illness" means a health condition that carries a
24high risk of mortality and either negatively impacts a person's
25daily function or quality of life or excessively strains their

 

 

10100SB1105sam001- 4 -LRB101 06383 KTG 59330 a

1caregiver.
2(Source: P.A. 96-1078, eff. 7-16-10.)
 
3    (305 ILCS 60/15)
4    Sec. 15. Pediatric palliative care pilot program. The
5Department shall develop a pediatric palliative care pilot
6program under which a qualifying child as defined in Section 25
7may receive community-based pediatric palliative care from a
8trained interdisciplinary team and may also choose to continue
9while continuing to pursue aggressive curative or
10disease-directed treatments for a serious potentially
11life-limiting illness under the benefits available under
12Article V of the Illinois Public Aid Code.
13(Source: P.A. 96-1078, eff. 7-16-10.)
 
14    (305 ILCS 60/20)
15    Sec. 20. Federal waiver or State Plan amendment. If
16applicable, the The Department shall submit the necessary
17application to the federal Centers for Medicare and Medicaid
18Services for a waiver or State Plan amendment to implement the
19pilot program described in this Act. If the application is in
20the form of a State Plan amendment, the State Plan amendment
21shall be filed prior to December 31, 2010. If the Department
22does not submit a State Plan amendment prior to December 31,
232010, the pilot program shall be created utilizing a waiver
24authority. The waiver request shall be included in any

 

 

10100SB1105sam001- 5 -LRB101 06383 KTG 59330 a

1appropriate waiver application renewal submitted prior to
2December 31, 2011, or shall be submitted as an independent
31915(c) Home and Community Based Medicaid Waiver within that
4same time period. After federal approval is secured, the
5Department shall implement the waiver or State Plan amendment
6within 12 months of the date of approval. The Department shall
7not draft any rules in contravention of this timetable for
8program development and implementation. By federal
9requirement, the application for a 1915 (c) Medicaid waiver
10program must demonstrate cost neutrality per the formula laid
11out by the Centers for Medicare and Medicaid Services. The
12Department shall not draft any rules in contravention of this
13timetable for pilot program development and implementation.
14This pilot program shall be implemented only to the extent that
15federal financial participation is available.
16(Source: P.A. 96-1078, eff. 7-16-10.)
 
17    (305 ILCS 60/25)
18    Sec. 25. Qualifying child.
19    (a) For the purposes of this Act, a qualifying child is a
20person under 19 18 years of age who is enrolled in the medical
21assistance program under Article V of the Illinois Public Aid
22Code and suffers from a serious illness potentially
23life-limiting medical condition, as defined in subsection (b).
24A child who is enrolled in the pilot program prior to the age
2519 18 may continue to receive services under the pilot program

 

 

10100SB1105sam001- 6 -LRB101 06383 KTG 59330 a

1until the day before his or her twenty-first birthday.
2    (b) The Department, in consultation with interested
3stakeholders, shall determine the serious illnesses
4potentially life-limiting medical conditions that render a
5pediatric medical assistance recipient eligible for the pilot
6program under this Act. Such serious illnesses medical
7conditions shall include, but need not be limited to, the
8following:
9        (1) Cancer (i) for which there is no known effective
10    treatment, (ii) that does not respond to conventional
11    protocol, (iii) that has progressed to an advanced stage,
12    or (iv) where toxicities or other complications limit
13    prohibit the administration of curative therapies.
14        (2) End-stage lung disease, including but not limited
15    to cystic fibrosis, that results in dependence on
16    technology, such as mechanical ventilation.
17        (3) Severe neurological conditions, including, but not
18    limited to, hypoxic ischemic encephalopathy, acute brain
19    injury, brain infections and inflammatory diseases, or
20    irreversible severe alteration of mental status, with one
21    of the following co-morbidities: (i) intractable seizures
22    or (ii) brainstem failure to control breathing or other
23    automatic physiologic functions.
24        (4) Degenerative neuromuscular conditions, including,
25    but not limited to, spinal muscular atrophy, Type I or II,
26    or Duchenne Muscular Dystrophy, requiring technological

 

 

10100SB1105sam001- 7 -LRB101 06383 KTG 59330 a

1    support.
2        (5) Genetic syndromes, such as Trisomy 13 or 18, where
3    (i) it is more likely than not that the child will not live
4    past 2 years of age or (ii) the child is severely
5    compromised with no expectation of long-term survival.
6        (6) Congenital or acquired end-stage heart disease,
7    including but not limited to the following: (i) single
8    ventricle disorders, including hypoplastic left heart
9    syndrome; (ii) total anomalous pulmonary venous return,
10    not suitable for curative surgical treatment; and (iii)
11    heart muscle disorders (cardiomyopathies) without adequate
12    medical or surgical treatments.
13        (7) End-stage liver disease where (i) transplant is not
14    a viable option or (ii) transplant rejection or failure has
15    occurred.
16        (8) End-stage kidney failure where (i) transplant is
17    not a viable option or (ii) transplant rejection or failure
18    has occurred.
19        (9) Metabolic or biochemical disorders, including, but
20    not limited to, mitochondrial disease, leukodystrophies,
21    Tay-Sachs disease, or Lesch-Nyhan syndrome where (i) no
22    suitable therapies exist or (ii) available treatments,
23    including stem cell ("bone marrow") transplant, have
24    failed.
25        (10) Congenital or acquired diseases of the
26    gastrointestinal system, such as "short bowel syndrome",

 

 

10100SB1105sam001- 8 -LRB101 06383 KTG 59330 a

1    where (i) transplant is not a viable option or (ii)
2    transplant rejection or failure has occurred.
3        (11) Congenital skin disorders, including but not
4    limited to epidermolysis bullosa, where no suitable
5    treatment exists.
6        (12) Any other serious illness that the Department
7    determines to be appropriate.
8    The definition of a serious illness life-limiting medical
9condition shall not include a definitive time period due to the
10difficulty and challenges of prognosticating life expectancy
11in children.
12(Source: P.A. 96-1078, eff. 7-16-10.)
 
13    (305 ILCS 60/30)
14    Sec. 30. Authorized providers. Providers authorized to
15deliver services under the pilot waiver program shall include
16licensed hospice agencies or home health agencies licensed to
17provide hospice care and will be subject to further criteria
18developed by the Department, in consultation with interested
19stakeholders, for provider participation. At a minimum, the
20participating provider must house a pediatric
21interdisciplinary team that includes: (i) a physician, acting
22as the program medical director, who is board certified or
23board eligible in pediatrics or hospice and palliative
24medicine; (ii) a registered nurse; and (iii) a licensed social
25worker with a background in pediatric care a pediatric medical

 

 

10100SB1105sam001- 9 -LRB101 06383 KTG 59330 a

1director, a nurse, and a licensed social worker. All members of
2the pediatric interdisciplinary team must meet criteria the
3Department may establish by rule, including demonstrated
4expertise in pediatric palliative care. submit to the
5Department proof of pediatric End-of-Life Nursing Education
6Curriculum (Pediatric ELNEC Training) or an equivalent.
7(Source: P.A. 96-1078, eff. 7-16-10.)
 
8    (305 ILCS 60/35)
9    Sec. 35. Interdisciplinary team; services. The Subject to
10federal approval for matching funds, the reimbursable services
11offered under the pilot program shall be provided by an
12interdisciplinary team, operating under the direction of a
13pediatric medical director, and shall include, but not be
14limited to, the following:
15        (1) Pediatric nursing for pain and symptom management.
16        (2) Expressive therapies (music or and art therapies)
17    for age-appropriate counseling.
18        (3) Client and family counseling (provided by a
19    licensed social worker, licensed counselor, or
20    non-denominational chaplain or spiritual counselor).
21        (4) Respite care.
22        (5) Bereavement services.
23        (6) Case management.
24        (7) Any other services that the Department determines
25    to be appropriate.

 

 

10100SB1105sam001- 10 -LRB101 06383 KTG 59330 a

1(Source: P.A. 96-1078, eff. 7-16-10.)
 
2    (305 ILCS 60/37 new)
3    Sec. 37. Medicaid managed care organizations; technical
4assistance. The Department, in consultation with interested
5stakeholders, shall establish standards for and provide
6technical assistance to managed care organizations, as defined
7in Section 5-30.1 of the Illinois Public Aid Code, to ensure
8the delivery of pediatric palliative care services.
 
9    (305 ILCS 60/40)
10    Sec. 40. Administration.
11    (a) The Department shall oversee the administration of the
12pilot program. The Department, in consultation with interested
13stakeholders, shall determine the appropriate process for
14review of referrals and enrollment of qualifying participants.
15    (b) The Department shall appoint an individual or entity to
16serve as case manager or an alternative position to assess
17level-of-care and target-population criteria for the pilot
18program. The Department shall ensure that the individual or
19entity meets the criteria for demonstrated expertise in
20pediatric palliative care that the Department, in consultation
21with interested stakeholders, may establish by rule receives
22pediatric End-of-Life Nursing Education Curriculum (Pediatric
23ELNEC Training) or an equivalent to become familiarized with
24the unique needs and difficulties facing this population. The

 

 

10100SB1105sam001- 11 -LRB101 06383 KTG 59330 a

1process for review of referrals and enrollment of qualifying
2participants shall not include unnecessary delays and shall
3reflect the fact that treatment of pain and other distressing
4symptoms represents an urgent need for children with a serious
5illness life-limiting medical conditions. The process shall
6also acknowledge that children with a serious illness
7life-limiting medical conditions and their families require
8holistic and seamless care.
9(Source: P.A. 96-1078, eff. 7-16-10.)
 
10    (305 ILCS 60/45)
11    Sec. 45. Report. Period of pilot program. After the program
12has been in place for 3 years, the Department shall prepare a
13report for the General Assembly concerning the program's
14outcomes effectiveness and shall also make recommendations for
15program improvement, including, but not limited to, the
16appropriateness of those serious illnesses that render a
17pediatric medical assistance receipt eligible for the program
18as defined in subsection (b) of Section 25 and the necessary
19services needed to ensure high-quality care for children and
20their families.
21    (a) The program implemented under this Act shall be
22considered a pilot program for 3 years following the date of
23program implementation or, if the pilot program is created
24utilizing a waiver authority, until the waiver that includes
25the services provided under the program undergoes the federally

 

 

10100SB1105sam001- 12 -LRB101 06383 KTG 59330 a

1mandated renewal process.
2    (b) During the period of time that the waiver program is
3considered a pilot program, pediatric palliative care shall be
4included in the issues reviewed by the Hospice and Palliative
5Care Advisory Board. The Board shall make recommendations
6regarding changes or improvements to the program, including but
7not limited to advisement on potential expansion of the
8potentially life-limiting medical conditions as defined in
9subsection (b) of Section 25.
10    (c) At the end of the 3-year pilot program, the Department
11shall prepare a report for the General Assembly concerning the
12program's outcomes effectiveness and shall also make
13recommendations for program improvement, including, but not
14limited to, the appropriateness of the potentially
15life-limiting medical conditions as defined in subsection (b)
16of Section 25.
17(Source: P.A. 96-1078, eff. 7-16-10.)
 
18    (305 ILCS 60/3 rep.)
19    Section 10. The Pediatric Palliative Care Act is amended by
20repealing Section 3.".