Section 11: Pediatric Palliative Care Program

There is hereby established the pediatric palliative care program. Said program shall be administered by the department, subject to appropriation, under this section and regulations promulgated hereunder. The program shall assist eligible children with a life-limiting illness and their families or guardians with services designed to achieve an improved quality of life and to meet the physical, emotional and spiritual needs experienced during the course of illness, death and bereavement.

Children less than 19 years of age shall be eligible for said program if they meet the requirements established by the department, which shall include:--

(a) a diagnosis of a life-limiting illness, including but not limited to, cancer, AIDS, congenital anomalies and other advanced illnesses; provided however, no requirement regarding life expectancy shall be imposed; and

(b) a requirement that the eligible child not be covered by a third-party payer for the services provided by said program.

Services provided by the program shall be determined by the department and shall include, but not be limited to, consultations for pain and symptom management, case management and assessment, social services, counseling, bereavement services, volunteer support services, and respite services, provided by professional or volunteer staff under professional supervision. Services shall be provided by hospice programs licensed under section 57D who meet such other criteria as the department may establish by regulation, including demonstrated expertise in pediatric palliative care. The department may by regulation establish limits on services provided by said program. The program established by this section shall not give rise to enforceable legal rights in any party or an enforceable entitlement to the services described in this section and nothing stated in this section shall be construed as giving rise to such enforceable legal rights or such enforceable entitlement.