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28	28	STATE OF OKLAHOMA
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30	30	2nd Session of the 58th Legislature (2022)
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32	32	HOUSE BILL 4396 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; providing
44	44	for codification; and providing an effective date.
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50	50	BE IT ENACTED BY THE PEOPLE OF THE STATE OF OKLAHOMA:
51	51	SECTION 1. NEW LAW A new section of law to be co dified
52	52	in the Oklahoma Statutes as Section 1-245 of Title 63, unless there
53	53	is created a duplication in num bering, reads as follows:
54	54	A. As used in this act:
55	55	1. "Department" means the State Department of Health ;
56	56	2. "Palliative care" means care focused on expert assessment
57	57	and management of pain and other symptoms, assessmen t and support of
58	58	caregiver needs, and coordination of care. Palliative care attends
59	59	to the physical, functional, psychological, practical, and spiritual
60	60	consequences of a seri ous illness. It is a person-centered and
61	61	family-centered approach to care, provi ding people living with a
62	62	serious illness relief from the symptoms and stress of an illness.
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89	89	Through early integration into the care plan for the seriously ill,
90	90	palliative care improves quality of life for the patient and the
91	91	family. Palliative care can b e offered in all care settings and at
92	92	any stage in a serious illness through collaboration of many types
93	93	of care providers; and
94	94	3. "Serious illness" means a health condition that carries a
95	95	high risk of mortality and negatively impacts a person's daily
96	96	function or quality of life.
97	97	B. The Department shall develop a pediatric palliative care
98	98	program, and the program shall cover community -based pediatric
99	99	palliative care from a trained inter disciplinary team as an added
100	100	benefit under which a qualifying child may also choose to continue
101	101	curative or disease-directed treatments for a serious illness under
102	102	the benefits available .
103	103	C. If applicable, the Department shall submit the necessary
104	104	application to the federal Centers for Medicare and Medicaid
105	105	Services for a waiver or state plan amendment to implement the
106	106	program described in this act. After federal approval is secured,
107	107	the Department shall implement the waiver or state plan amendment
108	108	within twelve (12) months of the date of approval. The Department
109	109	shall not draft any rules in contravention of this timetable for
110	110	program development and implementation .
111	111	D. For the purposes of this act, a qualifying child is a person
112	112	under twenty-one (21) years of age who is enrolled in the medical
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139	139	assistance program and is diagnosed by the child's primary ph ysician
140	140	or specialist as suffering from a serious illnes s.
141	141	E. The Department, in consultation with interested
142	142	stakeholders, shall determine the serious illnesses that render a
143	143	child who is enrolled in the medical assista nce program eligible for
144	144	the program under this act. Such serious illnesses shall include,
145	145	but not be limited to, the following:
146	146	1. Cancer for which there is no known effective treatment, that
147	147	does not respond to conventional protocol, that has progressed to an
148	148	advanced stage, or where toxicities or other complications limit the
149	149	administration of curative therapies ;
150	150	2. End-stage lung disease, including but not limited to, cystic
151	151	fibrosis, that results in dependence on technology, such as
152	152	mechanical ventilation;
153	153	3. Severe neurological cond itions, including, but not limited
154	154	to, hypoxic ischemic encephalopathy, acute brain injury, brain
155	155	infections and inflammatory diseases, or irreversible severe
156	156	alteration of mental status, with one of the following
157	157	comorbidities:
158	158	a. intractable seizures, or
159	159	b. brain stem failure to control breathing or other
160	160	automatic physiologic functions ;
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187	187	4. Degenerative neuromuscular conditions, including, but not
188	188	limited to, spinal muscular atrophy, Duchenne Muscular Dystrophy , or
189	189	Type 1 or 2, requiring technological support;
190	190	5. Genetic syndromes, such as, but not limited to, Trisomy 13
191	191	or 18, where the child has substantial neurocognitive disability
192	192	with no expectation of long-term survival;
193	193	6. Congenital or acquired end -stage heart disease without
194	194	adequate medical or s urgical treatments available;
195	195	7. End-stage liver disease, where a transplant is not a viable
196	196	option or a transplant rejection or failure has occurre d;
197	197	8. End-stage kidney failure , where a transplant is not a viable
198	198	option or a transplant rejection or failur e has occurred;
199	199	9. Metabolic or biochemical diso rders, including, but not
200	200	limited to, mitochondrial disease, leukodystrophies, Tay -Sachs
201	201	disease, or Lesch-Nyhan syndrome, where no suitable therapies exist
202	202	or available treatments, including stem cell transplant, or bone
203	203	marrow transplant, have failed;
204	204	10. Congenital or acquired diseases of the gastrointestinal
205	205	system, such as short bowel syndrome , where a transplant is not a
206	206	viable option or a transplant rejection or failure has occurred ;
207	207	11. Congenital skin disord ers, including but not limited to,
208	208	epidermolysis bullosa, where no suitable treatment exists ; and
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235	235	12. Any other serious illness that th e Department, in
236	236	consultation with interested stakeholders, determin es to be
237	237	appropriate.
238	238	The definition of a serious illness shall not include a
239	239	definitive time period due to the difficulty and challenges of
240	240	prognosticating life expectancy in children.
241	241	F. Providers authorized to deliver services under the program
242	242	shall include licensed hospice agencies or home hea lth agencies
243	243	licensed to provide hospice care or entities with demonstrated
244	244	expertise in pediatric palliative care and will be subject to
245	245	further criteria developed by the Department, in consultation with
246	246	interested stakeholders, for provider participation . At a minimum,
247	247	the participating provider must house a pediatric interdisciplinary
248	248	team that includes, but is not limited to :
249	249	1. A physician, acting as the program medical director, who is
250	250	board certified or board eligible in pediatrics or hospice and
251	251	palliative medicine;
252	252	2. A registered nurse; and
253	253	3. A licensed social worker with a background in pediatric
254	254	care.
255	255	G. All members of the ped iatric interdisciplinary team must
256	256	meet criteria the Department may establish by rule, including
257	257	demonstrated expertise in pediatric palliati ve care.
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284	284	H. Subject to federal approval for matching funds, the
285	285	reimbursable services offered under the program sh all be provided by
286	286	an interdisciplinary team, operating under the di rection of a
287	287	program medical director, and shall include, but not be limited to,
288	288	the following:
289	289	1. Nursing for pain and symptom management ;
290	290	2. Expressive therapies , such as music or art therapies, for
291	291	age-appropriate counseling ;
292	292	3. Client and family cou nseling provided by a licensed social
293	293	worker, licensed professional counselo r, child life specialist, or
294	294	nondenominational chaplain or spiritual counselor ;
295	295	4. Respite care;
296	296	5. Bereavement services;
297	297	6. Case management; or
298	298	7. Any other services that the Department determines to be
299	299	appropriate.
300	300	I. The Department shall establish standards for and provide
301	301	technical assistance to managed care organization s to ensure the
302	302	delivery of pediatric palliative care services to qualifying
303	303	children.
304	304	J. The Department shall oversee the administration of the
305	305	program. The Department, in consul tation with interested
306	306	stakeholders, shall determine the appropriate process for review of
307	307	referrals and enrollm ent of qualifying children . The Department
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334	334	shall appoint an individual or entity to serve as program manager or
335	335	an alternative position to asse ss level-of-care and target-
336	336	population criteria for the program. The Department shall ensure
337	337	that the individual or entity meets the criteria for demonstrated
338	338	expertise in pediatric palliative care that the Department, in
339	339	consultation with interested stak eholders, may establish by rule.
340	340	The process for review of referrals and enrollment of qualifying
341	341	children shall not include unnecessary delays and shall reflect the
342	342	fact that treatment of pain and other distressing symptoms
343	343	represents an urgent need for children with a serious illness. The
344	344	process shall also acknowledge that children with a serious illness
345	345	and their families require holistic and seamless care .
346	346	K. After the program has been in place for three (3) years, the
347	347	Department shall prepare a rep ort for the Legislature concerning the
348	348	program's outcomes and effectiveness and shall also make
349	349	recommendations for program improvement, including, but not limited
350	350	to, the appropriateness of those serious illnesses that render a
351	351	child who is enrolled in the me dical assistance program eligible for
352	352	the program and the necessary services needed to ensure high -quality
353	353	care for qualifying children and their families .
354	354	L. Nothing in this act shall be construed so as to result in
355	355	the elimination or reduction of any be nefits or services covered
356	356	under another program.
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383	383	M. This act does not affect an individual's eligibility t o
384	384	receive, concurrently with the benefits provided for in this act,
385	385	any services, including home health services, for which the
386	386	individual would hav e been eligible in the absence of this act.
387	387	SECTION 2. This act shall become effective November 1, 2022.
388	388
389	389	58-2-9590 KN 01/18/22

Oklahoma 2022 Regular Session

Oklahoma House Bill HB4396 Compare Versions