NEW DPH PEDIATRIC PALLIATIVE CARE PROGRAM

In April 2006, Governor Mitt Romney signed into law “An Act Providing Access to Affordable, Quality, Accountable Care”, a lesser known aspect of which established the Pediatric Palliative Care Program. The program is administered by the Massachusetts Department of Public Health (DPH), Division for Perinatal, Early Childhood and Special Care Needs. The program is officially open for business, and some of the contracted hospices are ready to take referrals, others are not yet fully trained. A list of participating hospices is attached.

The Pediatric Palliative Care (PPC) program is designed to complement existing services to meet the needs of eligible children with life-limiting illnesses and their families or guardians. For the most part, these services are provided in the home and are appropriate for children with a wide range of life-limiting illnesses, even when cure remains a possibility.The PPC program supports the child and family with services designed to achieve an improved quality of life bymeeting the physical, emotional and spiritual needs experienced during the course of illness, death and bereavement.Examples of these services include but are not limited to skilled pain and symptom management, counseling for the child and family, spiritual care, advance care planning, referrals to other community services, short-term respite care, and bereavement care for the family.

For the purposes of this program, Life-Limiting Conditions are defined broadly as “Conditions where premature death is likely or expected.”

Conditions appropriate for pediatric palliative care include but are not limited to:

Eligibility

All Massachusetts children less than 19 years old who are determined by a physician to have a potentially life-limiting illness are eligible for the program. All life-limiting diagnoses are included. There are no restrictions as to the life expectancy of the child. Children in the PPC program may continue to receive care directed at cure. Admission to PPC does not preclude the child and family from treatment choices or hopeful, supportive therapies.

Cost/Payment

There is no cost to the family. The program is designed as a “payer of last resort”; services covered by insurance are accessed first. The PPC program may bill the insurer for the services covered by insurance and DPH for uncovered expenses/services.  Some examples that this program seems intended to address include children who can't access hospice through regular insurance because they don't have a 6-month prognosis and/or are still seeking active treatment.  Or perhaps the children are receiving the medical care they need, but their families need counseling.

Additional information is available from the Community Resource Center, Ellen Forman x6-5807.

-Adapted from “DRAFT Pediatric Palliative Care Operational Program Standards”, Massachusetts Department of Public Health October 19, 2006, and personal communication with Nancy Wilber, EdD, Director, Community Health Services Information Initiatives,Center for Community Health, Massachusetts Department of Public Health. Thanks to Dr. Wilber for her help with this article, and to Andra Sobran, LICSW, Clinical Team Leader, MGH Social Service Department, for bringing this program to our attention.

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