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STATE OF OKLAHOMA
1st Session of the 59th Legislature (2023)
HOUSE BILL 2510 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; requiring
the Department to oversee administration of the
program; requiring the Depart ment to report to the
Legislature; 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, practic al, 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
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serious illness relief from the sympto ms and stress of the illness.
Through early integration into the care p lan 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 il lness 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 pe diatric palliative care
program, and the program shall cover community -based pediatric
palliative care from a trained inter disciplinary team under which a
qualifying child may also choose to continue curative or disease-
directed treatments for a serious il lness under the benefits
available.
C. If applicable, the Department s hall 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 waiv er 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 im plementation.
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D. For the purposes of this act, a qualifying child is a person
under twenty-one (21) years of age who is enrolled in SoonerCare and
is diagnosed by the child's primary physician 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 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 conventiona l 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 techn ology, such as
mechanical ventilation;
3. Severe neurological cond itions, including, but not limited
to, hypoxic ischemic encephalopathy, acute brain injury, brain
infections and infla mmatory diseases, or irreversible severe
alteration of mental status, w ith 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 c onditions, including, but not
limited to, spinal muscular atrophy, or Duchenne muscular dystrophy,
Type 1 or 2, requiring technological support;
5. Genetic syndromes, such as, Trisomy 13 or 18, where the
child has substantial neurocognitive disability wit h 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 failur e has occurred;
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 exis t
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 il lness that the Department, in
consultation with interested stakeholders , determines 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 progr am
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 subj ect to
further criteria developed by the Department, in consultation wi th
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 pediatric interdisciplinary team must
meet criteria the Departmen t 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 p rogram shall be provided by
the interdisciplinary team, operating under the direction 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 counseling 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 th at 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 enrollment 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 illn ess
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 pediatric palliative care program and the necessary services
needed to ensure high -quality care for qualifying children and the ir
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 to
receive, concurrently with the be nefits 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, 2023.
59-1-7036 TJ 12/29/22