In participating counties, the Partners for Children (PFC) Pediatric Palliative Care Waiver program offers supportive services for children with life-limiting or life-threatening illnesses and their families. These services are provided by local participating hospice and home health agencies to eligible children and their families.
Care Coordination is the core PFC service that makes it possible for the sick child to receive medically necessary care at home and in the community. The Care Coordinator from a participating home health or hospice agency meets with the child and family to develop a care plan. This care plan is called the Family-Centered Action Plan or F-CAP. Care plan goals are set during team meetings with the child/family and the Care Coordinator. Parents may choose invite others to attend team meetings, such as teachers, counselors, religious advisors, and the County CSS Nurse.
The Care Coordinator supports the sick child and family in all aspects of life where special help is needed. This special help can includes accompanying the child/family to medical, school, and hospital appointments, as needed, such as doctor, school or hospital. The special help can also include identifying problems in the home, such as a making sure the home is safe and easy to use for the child, and finding resources in the community to assist the child and family with a range of issues. Then, the Care Coordinator meets with the family to discuss whether current PFC services are meeting the child and family’s needs. Based upon family input, the Care Coordinator may change the care plan to stop services or add new services.
During monthly care coordination home visits, the child receives a comprehensive physical exam by a registered nurse (RN). The RN also checks to make sure that the home is a safe place to care for the child. This includes checking to see that medical equipment is working and that there are adequate supplies on hand. The RN also checks to see is fire extinguishers and carbon monoxide monitors are in working order.
Family Training is provided by an RN, at the request of family caregivers. Through family training, caregivers can develop the skills they need to feel comfortable caring for their child at home.
Pain and Symptom Management is provided by an RN, at the request of the child and family. This nursing care in the home to manage the sick child’s pain and symptoms.
Expressive Therapies are provided in the home by certified therapists at the request of the child and family. Child Life Therapy, Art Therapy and Music Therapy help improve the sick child’s and siblings’ ability to express feelings and develop ways of coping with life-limiting or life-threatening illness. Massage Therapy can help relieve symptoms, such as spasms, to decrease pain and help the child relax.
In-Home Respite and Coordination of Out-of-Home Respite is provided by an RN, Licensed Vocational Nurse (LVN), or Certified Home Health Aide (CHHA) at the request of the family. Respite gives family caregivers a break from the demanding responsibility of caring for a sick child.
Family (Including Bereavement) Counseling is provided by a licensed social worker, marriage and family therapist, or psychologist at the request of the family. The counselor supports the family unit in dealing with stress and grief issues related to the child’s life-limiting or life-threatening illness.
Personal Care Services are provided by a Certified Home Health Assistant (CHHA) or Certified Nursing Assistant (CNA) and include assisting with bathing, grooming, dressing, feeding; skin bowel, skin care, and bladder and menstrual care.
Access to 24/7 On-Call Support provided by an RN who is experienced in providing home-based care for children with complex and life-limiting or life-threatening medical conditions is available to families through participation in the PFC Waiver.
The Nick Snow Children’s Hospice and Palliative Care Act of 2006 Assembly Bill 1745 required the California Department of Health Care Services to submit a waiver to the Centers for Medicare and Medicaid Services. This would allow children with life-limiting or life-threatening conditions to receive curative and palliative care without electing to receive hospice care.
Administrative Management of the Waiver
The Systems of Care Division (formerly known as the Children’s Medical Services) worked with advocacy organizations and other stakeholders to develop the waiver which was approved as a pilot project in December 2008. On December 27, 2012, the PFC waiver was renewed for a period of five years, through December 26, 2017.
PFC email address: firstname.lastname@example.org