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28	28	STATE OF OKLAHOMA
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30	30	1st Session of the 59th Legislature (2023)
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32	32	HOUSE BILL 2510 By: Pittman
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38	38	AS INTRODUCED
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40	40	An Act relating to pediatric palliative care;
41	41	defining terms; creating program; defining program
42	42	qualifications; authorizing sta ndards; allowing State
43	43	Department of Health to promulgate rules; requiring
44	44	the Department to oversee administration of the
45	45	program; requiring the Depart ment to report to the
46	46	Legislature; providing for codification; and
47	47	providing an effective date.
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52	52	BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
53	53	SECTION 1. NEW LAW A new section of law to be co dified
54	54	in the Oklahoma Statutes as Section 1-245 of Title 63, unless there
55	55	is created a duplication in num bering, reads as follows:
56	56	A. As used in this act:
57	57	1. "Department" means the State Department of Health;
58	58	2. "Palliative care" means care focused on expert assessment
59	59	and management of pain and other symptoms, assessmen t and support of
60	60	caregiver needs, and coordination of care. Palliative care attends
61	61	to the physical, functional, psychological, practic al, and spiritual
62	62	consequences of a seri ous illness. It is a person-centered and
63	63	family-centered approach to care, provi ding people living with a
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90	90	serious illness relief from the sympto ms and stress of the illness.
91	91	Through early integration into the care p lan for the seriously ill,
92	92	palliative care improves quality of life for the patient and the
93	93	family. Palliative care can b e offered in all care settings and at
94	94	any stage in a serious il lness through collaboration of many types
95	95	of care providers; and
96	96	3. "Serious illness" means a health condition that carries a
97	97	high risk of mortality and negatively impacts a person 's daily
98	98	function or quality of life.
99	99	B. The Department shall develop a pe diatric palliative care
100	100	program, and the program shall cover community -based pediatric
101	101	palliative care from a trained inter disciplinary team under which a
102	102	qualifying child may also choose to continue curative or disease-
103	103	directed treatments for a serious il lness under the benefits
104	104	available.
105	105	C. If applicable, the Department s hall submit the necessary
106	106	application to the federal Centers for Medicare and Medicaid
107	107	Services for a waiver or state plan amendment to implement the
108	108	program described in this act. After federal approval is secured,
109	109	the Department shall implement the waiv er or state plan amendment
110	110	within twelve (12) months of the date of approval. The Department
111	111	shall not draft any rules in contravention of this timetable for
112	112	program development and im plementation.
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139	139	D. For the purposes of this act, a qualifying child is a person
140	140	under twenty-one (21) years of age who is enrolled in SoonerCare and
141	141	is diagnosed by the child's primary physician or specialist as
142	142	suffering from a serious illnes s.
143	143	E. The Department, in consultation with interested
144	144	stakeholders, shall determine the serious illnesses that render a
145	145	child eligible for the program under this act. Such serious
146	146	illnesses shall include, but not be limited to, the following:
147	147	1. Cancer for which there is no known effective treatment, that
148	148	does not respond to conventiona l protocol, that has progressed to an
149	149	advanced stage, or where toxicities or other complications limit the
150	150	administration of curative therapies ;
151	151	2. End-stage lung disease, including , but not limited to,
152	152	cystic fibrosis, that results in dependence on techn ology, such as
153	153	mechanical ventilation;
154	154	3. Severe neurological cond itions, including, but not limited
155	155	to, hypoxic ischemic encephalopathy, acute brain injury, brain
156	156	infections and infla mmatory diseases, or irreversible severe
157	157	alteration of mental status, w ith one of the following
158	158	comorbidities:
159	159	a. intractable seizures, or
160	160	b. brain stem failure to control breathing or other
161	161	automatic physiologic functions ;
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188	188	4. Degenerative neuromuscular c onditions, including, but not
189	189	limited to, spinal muscular atrophy, or Duchenne muscular dystrophy,
190	190	Type 1 or 2, requiring technological support;
191	191	5. Genetic syndromes, such as, Trisomy 13 or 18, where the
192	192	child has substantial neurocognitive disability wit h no expectation
193	193	of long-term survival;
194	194	6. Congenital or acquired end -stage heart disease without
195	195	adequate medical or s urgical treatments available;
196	196	7. End-stage liver disease, where a transplant is not a viable
197	197	option or a transplant rejection or failur e has occurred;
198	198	8. End-stage kidney failure , where a transplant is not a viable
199	199	option or a transplant rejection or failur e has occurred;
200	200	9. Metabolic or biochemical diso rders, including, but not
201	201	limited to, mitochondrial disease, leukodystrophies, Tay -Sachs
202	202	disease, or Lesch-Nyhan syndrome, where no suitable therapies exis t
203	203	or available treatments, including stem cell transplant or bone
204	204	marrow transplant, have failed;
205	205	10. Congenital or acquired diseases of the gastrointestinal
206	206	system, such as short bowel syndrome, where a transplant is not a
207	207	viable option or a transplant rejection or failure has occurred;
208	208	11. Congenital skin disord ers, including, but not limited to,
209	209	epidermolysis bullosa, where no suitable treatment exists ; and
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236	236	12. Any other serious il lness that the Department, in
237	237	consultation with interested stakeholders , determines to be
238	238	appropriate.
239	239	The definition of a serious illness shall not include a
240	240	definitive time period due to the difficulty and challenges of
241	241	prognosticating life expectancy in children.
242	242	F. Providers authorized to deliver services under the progr am
243	243	shall include licensed hospice agencies or home hea lth agencies
244	244	licensed to provide hospice care or entities with demonstrated
245	245	expertise in pediatric palliative care and will be subj ect to
246	246	further criteria developed by the Department, in consultation wi th
247	247	interested stakeholders, for provider participation . At a minimum,
248	248	the participating provider must house a pediatric interdisciplinary
249	249	team that includes, but is not limited to :
250	250	1. A physician, acting as the program medical director, who is
251	251	board certified or board eligible in pediatrics or hospice and
252	252	palliative medicine;
253	253	2. A registered nurse; and
254	254	3. A licensed social worker with a background in pediatric
255	255	care.
256	256	G. All members of the pediatric interdisciplinary team must
257	257	meet criteria the Departmen t may establish by rule, including
258	258	demonstrated expertise in pediatric palliati ve care.
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285	285	H. Subject to federal approval for matching funds, the
286	286	reimbursable services offered under the p rogram shall be provided by
287	287	the interdisciplinary team, operating under the direction of a
288	288	program medical director, and shall include, but not be limited to,
289	289	the following:
290	290	1. Nursing for pain and symptom management ;
291	291	2. Expressive therapies , such as music or art therapies, for
292	292	age-appropriate counseling ;
293	293	3. Client and family counseling provided by a licensed social
294	294	worker, licensed professional counselo r, child life specialist, or
295	295	nondenominational chaplain or spiritual counselor ;
296	296	4. Respite care;
297	297	5. Bereavement services;
298	298	6. Case management; or
299	299	7. Any other services th at the Department determines to be
300	300	appropriate.
301	301	I. The Department shall establish standards for and provide
302	302	technical assistance to managed care organization s to ensure the
303	303	delivery of pediatric palliative care services to qualifying
304	304	children.
305	305	J. The Department shall oversee the administration of the
306	306	program. The Department, in consul tation with interested
307	307	stakeholders, shall determine the appropriate process for review of
308	308	referrals and enrollment of qualifying children . The Department
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335	335	shall appoint an individual or entity to serve as program manager or
336	336	an alternative position to asse ss level-of-care and target-
337	337	population criteria for the program. The Department shall ensure
338	338	that the individual or entity meets the criteria for demonstrated
339	339	expertise in pediatric palliative care that the Department, in
340	340	consultation with interested stak eholders, may establish by rule.
341	341	The process for review of referrals and enrollment of qualifying
342	342	children shall not include unnecessary delays and shall reflect the
343	343	fact that treatment of pain and other distressing symptoms
344	344	represents an urgent need for children with a serious illness. The
345	345	process shall also acknowledge that children with a serious illn ess
346	346	and their families require holistic and seamless care .
347	347	K. After the program has been in place for three (3) years, the
348	348	Department shall prepare a rep ort for the Legislature concerning the
349	349	program's outcomes and effectiveness and shall also make
350	350	recommendations for program improvement, including, but not limited
351	351	to, the appropriateness of those serious illnesses that render a
352	352	child who is enrolled in the me dical assistance program eligible for
353	353	the pediatric palliative care program and the necessary services
354	354	needed to ensure high -quality care for qualifying children and the ir
355	355	families.
356	356	L. Nothing in this act shall be construed so as to result in
357	357	the elimination or reduction of any be nefits or services covered
358	358	under another program.
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385	385	M. This act does not affect an individual 's eligibility to
386	386	receive, concurrently with the be nefits provided for in this act,
387	387	any services, including home health services, for which the
388	388	individual would hav e been eligible in the absence of this act.
389	389	SECTION 2. This act shall become effective November 1, 2023.
390	390
391	391	59-1-7036 TJ 12/29/22

Oklahoma 2024 Regular Session

Oklahoma House Bill HB2510 Compare Versions