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STATE OF OKLAHOMA
2nd Session of the 58th Legislature (2022)
HOUSE BILL 4396 By: Pittman
AS INTRODUCED
An Act relating to pediatric palliative care;
defining terms; creating program; defining program
qualifications; authorizing sta ndards; allowing State
Department of Health to promulgate rules; providing
for codification; and providing an effective date.
BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
SECTION 1. NEW LAW A new section of law to be co dified
in the Oklahoma Statutes as Section 1-245 of Title 63, unless there
is created a duplication in num bering, reads as follows:
A. As used in this act:
1. "Department" means the State Department of Health ;
2. "Palliative care" means care focused on expert assessment
and management of pain and other symptoms, assessmen t and support of
caregiver needs, and coordination of care. Palliative care attends
to the physical, functional, psychological, practical, and spiritual
consequences of a seri ous illness. It is a person-centered and
family-centered approach to care, provi ding people living with a
serious illness relief from the symptoms and stress of an illness.
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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 b e offered in all care settings and at
any stage in a serious illness through collaboration of many types
of care providers; and
3. "Serious illness" means a health condition that carries a
high risk of mortality and negatively impacts a person's daily
function or quality of life.
B. The Department shall develop a pediatric palliative care
program, and the program shall cover community -based pediatric
palliative care from a trained inter disciplinary team as an added
benefit under which a qualifying child may also choose to continue
curative or disease-directed treatments for a serious illness under
the benefits available .
C. If applicable, 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
program described in this act. After federal approval is secured,
the Department shall implement the waiver or state plan amendment
within twelve (12) months of the date of approval. The Department
shall not draft any rules in contravention of this timetable for
program development and implementation .
D. For the purposes of this act, a qualifying child is a person
under twenty-one (21) years of age who is enrolled in the medical
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assistance program and is diagnosed by the child's primary ph ysician
or specialist as suffering from a serious illnes s.
E. The Department, in consultation with interested
stakeholders, shall determine the serious illnesses that render a
child who is enrolled in the medical assista nce program eligible for
the program under this act. Such serious illnesses shall include,
but not be limited to, the following:
1. Cancer for which there is no known effective treatment, that
does not respond to conventional protocol, that has progressed to an
advanced stage, or where toxicities or other complications limit 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 cond itions, 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
comorbidities:
a. intractable seizures, or
b. brain stem failure to control breathing or other
automatic physiologic functions ;
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4. Degenerative neuromuscular conditions, including, but not
limited to, spinal muscular atrophy, Duchenne Muscular Dystrophy , or
Type 1 or 2, requiring technological support;
5. Genetic syndromes, such as, but not limited to, Trisomy 13
or 18, where the child has substantial neurocognitive disability
with no expectation of long-term survival;
6. Congenital or acquired end -stage heart disease without
adequate medical or s urgical treatments available;
7. End-stage liver disease, where a transplant is not a viable
option or a transplant rejection or failure has occurre d;
8. End-stage kidney failure , where a transplant is not a viable
option or a transplant rejection or failur e has occurred;
9. Metabolic or biochemical diso rders, including, but not
limited to, mitochondrial disease, leukodystrophies, Tay -Sachs
disease, or Lesch-Nyhan syndrome, where no suitable therapies exist
or available treatments, including stem cell transplant, or bone
marrow transplant, have failed;
10. Congenital or acquired diseases of the gastrointestinal
system, such as short bowel syndrome , where a transplant is not a
viable option or a transplant rejection or failure has occurred ;
11. Congenital skin disord ers, including but not limited to,
epidermolysis bullosa, where no suitable treatment exists ; and
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12. Any other serious illness that th e Department, in
consultation with interested stakeholders, determin es to be
appropriate.
The definition of a serious illness shall not include a
definitive time period due to the difficulty and challenges of
prognosticating life expectancy in children.
F. Providers authorized to deliver services under the program
shall include licensed hospice agencies or home hea lth agencies
licensed to provide hospice care or entities with demonstrated
expertise in pediatric palliative 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, but is not limited to :
1. A physician, acting as the program medical director, who is
board certified or board eligible in pediatrics or hospice and
palliative medicine;
2. A registered nurse; and
3. A licensed social worker with a background in pediatric
care.
G. All members of the ped iatric interdisciplinary team must
meet criteria the Department may establish by rule, including
demonstrated expertise in pediatric palliati ve care.
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H. Subject to federal approval for matching funds, the
reimbursable services offered under the program sh all be provided by
an interdisciplinary team, operating under the di rection of a
program medical director, and shall include, but not be limited to,
the following:
1. Nursing for pain and symptom management ;
2. Expressive therapies , such as music or art therapies, for
age-appropriate counseling ;
3. Client and family cou nseling provided by a licensed social
worker, licensed professional counselo r, child life specialist, or
nondenominational chaplain or spiritual counselor ;
4. Respite care;
5. Bereavement services;
6. Case management; or
7. Any other services that the Department determines to be
appropriate.
I. The Department shall establish standards for and provide
technical assistance to managed care organization s to ensure the
delivery of pediatric palliative care services to qualifying
children.
J. The Department shall oversee the administration of the
program. The Department, in consul tation with interested
stakeholders, shall determine the appropriate process for review of
referrals and enrollm ent of qualifying children . The Department
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shall appoint an individual or entity to serve as program manager or
an alternative position to asse ss level-of-care and target-
population criteria for the 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 stak eholders, may establish by rule.
The process for review of referrals and enrollment of qualifying
children 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. The
process shall also acknowledge that children with a serious illness
and their families require holistic and seamless care .
K. After the program has been in place for three (3) years, the
Department shall prepare a rep ort for the Legislature concerning the
program's outcomes and effectiveness and shall also make
recommendations for program improvement, including, but not limited
to, the appropriateness of those serious illnesses that render a
child who is enrolled in the me dical assistance program eligible for
the program and the necessary services needed to ensure high -quality
care for qualifying children and their families .
L. Nothing in this act shall be construed so as to result in
the elimination or reduction of any be nefits or services covered
under another program.
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M. This act does not affect an individual's eligibility t o
receive, concurrently with the benefits provided for in this act,
any services, including home health services, for which the
individual would hav e been eligible in the absence of this act.
SECTION 2. This act shall become effective November 1, 2022.
58-2-9590 KN 01/18/22