Schiavoni, Simon, Kassay, Jensen, De Los Santos, McDonald, Giglio, Fitzpatrick, Gandolfo, Stern,
Griffin, Reyes, Durso
MLTSPNSR
Add §2801-i, amd §2807, Pub Health L
Enacts the "pediatric palliative care center act" to establish a demonstration program for pediatric palliative care centers for up to five not-for-profits to provide palliative care to individuals who are under twenty-one years of age, have been diagnosed with a chronic, complex, life-threatening illness that is expected to shorten their life expectancy, and is not expected to survive past twenty-one years of age; authorizes the establishment or approval of a rate methodology.
NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
BILL NUMBER: A10569A
SPONSOR: Paulin TITLE OF BILL:
An act to amend the public health law, in relation to establishing a
demonstration program for pediatric palliative care centers; authorizing
a rate methodology for pediatric palliative care centers; and providing
for the repeal of such provisions upon expiration thereof
PURPOSE:
To establish a demonstration program for pediatric palliative care
centers under the Department of Health, allowing children with life-lim-
iting illnesses to receive palliative, respite and hospice services in a
residential, home-like setting. Establishing this demonstration will
allow Medicaid to support care in a lower-cost residential setting when
hospital-level care is not optimal. This will improve system efficiency
while enhancing the patient and family experience.
SUMMARY OF PROVISIONS:
Section 1: Is the short title.
Section 2. Amends the public health law by adding new section 2801-I to
establish a limited demonstration program for patients under twenty-one
years of age with life-limiting illnesses who are not expected to
survive past age twenty-one.
Section 3: Amends section 2807 by adding subdivision 22, directing the
Commissioner to establish or approve an enhanced rate methodology for
pediatric palliative care centers licensed under section 2801-I; facili-
ties must meet process and outcome standards consistent with section
2801-j to qualify.
Section 4: Is the effective date as well as a sunset date.
JUSTIFICATION:
New York currently lacks a licensure category and reimbursement struc-
ture for pediatric palliative care centers. As a result, children with
chronic, complex, and life-limiting illnesses often remain in prolonged
hospital stays, are placed in adult-oriented facilities, or are forced
to seek care far from home, including out of state. These options are
costly, emotionally taxing for families, and insufficient for pediatric
patients. Pediatric palliative care centers provide short-term residen-
tial respite and specialized palliative support in a family-centered
environment designed specifically for children and their siblings.
This gap limits the state's ability to provide appropriate, age-centered
care to children with complex medical needs. Organizations such as
Angela's House have demonstrated the effectiveness of community-based,
pediatric-focused care by supporting medically fragile children and
their families through specialized residential and home-based services.
However, the absence of a statutory framework prevents the establishment
of pediatric palliative care centers able to provide licensed, reimburs-
able residential care.
This bill is modeled after successful pediatric palliative care frame-
works in other states. Iowa's "Mason's Law" (2025), established pedia-
tric palliative care centers under a new license category within resi-
dential care facilities serving children under twenty-one with
life-limiting illnesses, ensuring access to funding streams. Minnesota
similarly amended its residential hospice statute to allow pediatric
residential care facilities, such as Crescent Cove (2023), to operate
under a modified residential hospice license, in coordination with the
state Medicaid program. Together, the Iowa and Minnesota frameworks
demonstrate that pediatric palliative care centers can be licensed with-
in existing residential or hospice categories while enabling Medicaid
reimbursement for respite, hospice, and palliative services in a resi-
dential, family-centered setting.
Consistent with these models, this bill directs the Department of Health
to establish. a special demonstration program for up to 5 not for
profits for facilities serving pediatric palliative care patients and
providing respite and hospice program services. Every child deserves to
live with dignity, comfort, and love, and every parent deserves the
support and peace of mind of knowing their child's needs will be cared
for at the highest level. By establishing this program, we will ensure
children with life-limiting illnesses can receive compassionate, age-ap-
propriate, and home-like care, while families gain the help and reassur-
ance they need.
EFFECTIVE DATE:
This act shall take effect on the one hundred twentieth day after it
shall have become a law. NEW YORK STATE ASSEMBLY MEMORANDUM IN SUPPORT
OF LEGISLATION submitted in accordance with Assembly Rule III, Sec 1(f)
STATE OF NEW YORK
________________________________________________________________________
10569--A
IN ASSEMBLY
March 13, 2026
___________
Introduced by M. of A. PAULIN, SCHIAVONI, SIMON, KASSAY, JENSEN,
DE LOS SANTOS, McDONALD, GIGLIO, FITZPATRICK, GANDOLFO, STERN, GRIF-
FIN, REYES, DURSO -- read once and referred to the Committee on Health
-- committee discharged, bill amended, ordered reprinted as amended
and recommitted to said committee
AN ACT to amend the public health law, in relation to establishing a
demonstration program for pediatric palliative care centers; authoriz-
ing a rate methodology for pediatric palliative care centers; and
providing for the repeal of such provisions upon expiration thereof
The People of the State of New York, represented in Senate and Assem-bly, do enact as follows:
1 Section 1. Short title. This act shall be known as the "pediatric
2 palliative care center act".
3 § 2. The public health law is amended by adding new section 2801-i to
4 read as follows:
5 § 2801-i. Pediatric palliative care center demonstration program. 1.
6 For the purposes of this section (a) "Pediatric palliative care patient"
7 means an individual who:
8 (i) is under twenty-one years of age;
9 (ii) has been diagnosed with a chronic, complex, life-threatening
10 illness that is expected to shorten the individual's life expectancy;
11 and
12 (iii) is not expected to survive past twenty-one years of age.
13 (b) "Pediatric palliative care" means patient and family centered
14 interdisciplinary care provided to those under twenty-one years of age
15 with serious, complex, chronic, life-limiting, or life-threatening
16 medical conditions for the purpose of preventing and relieving suffering
17 and improving quality of life. Care may be provided concurrently with
18 curative, restorative, disease directed, or life prolonging treatment
19 and if appropriate regardless of prognosis or life expectancy.
20 2. (a) Notwithstanding any other provision of law, the department
21 shall establish a pediatric palliative care center demonstration
22 program, of up to five not-for-profit entities, to evaluate the delivery
23 of pediatric palliative care centers services and their efficacy.
EXPLANATION--Matter in italics (underscored) is new; matter in brackets
[] is old law to be omitted.
LBD14516-12-6
A. 10569--A 2
1 (b) Such demonstration centers shall be limited in size by the depart-
2 ment after considering the need of the demonstration catchment area. The
3 department shall also consider the placement of the centers based on an
4 estimated number of pediatric palliative care patients in the particular
5 area and the availability of other services in the area.
6 (c) Before approving a not-for-profit entity for the demonstration
7 program under this section, the commissioner shall be satisfied with the
8 character and competence of such entity. The commissioner shall take
9 into consideration any experience with the department and other state
10 agencies.
11 3. (a) A pediatric palliative care center approved to operate under
12 this section shall be eligible for federal funding to the extent possi-
13 ble.
14 (b) Hospice services provided within a pediatric palliative care
15 center shall be delivered by, or by contract with, a hospice program
16 licensed pursuant to article forty of this chapter.
17 4. The department shall adopt rules and regulations which shall
18 include, but not be limited to, minimum operating standards applicable
19 to the services and need of pediatric palliative care patients;
20 5. Eligibility criteria for pediatric palliative care center services
21 shall be based upon medical necessity, functional impairment, caregiver
22 need and other criteria established by the commissioner.
23 § 3. Section 2807 of the public health law is amended by adding a new
24 subdivision 22 to read as follows:
25 22. Notwithstanding any provision of law, rule or regulation to the
26 contrary, the commissioner shall establish or approve a rate methodology
27 for pediatric palliative care centers established pursuant to section
28 two thousand eight hundred one-i of this article, for the purposes of
29 providing palliative care to children. Such rate methodology shall be
30 based on the reasonable costs of operating a demonstration center in an
31 efficient manner. The commissioner may also apply for federal financial
32 participation if appropriate.
33 § 4. This act shall take effect on the one hundredth day after it
34 shall have become a law and shall expire and be deemed repealed 8 years
35 after such date. Effective immediately, the addition, amendment and/or
36 repeal of any rule or regulation necessary for the implementation of
37 this act on its effective date are authorized to be made and completed
38 on or before such effective date.
