What is Family-Centered Care?
Family-centered care refers to services that are delivered in a way that respects the central role of the family as caregiver, advocate, and decision maker for the child. It represents a change from the traditional approach of providing services and is built on a foundation of collaborative relationships between families and professionals.
Positive collaborative relationships develop as parents and professionals demonstrate their mutual trust and respect, and clarify what they can expect from each other.
- promotes a relationship in which family members and professionals work together to ensure the best services for the child and family;
- recognizes and respects the knowledge, skills, and experiences that families and professionals bring to the relationship;
- acknowledges that the development of trust is an integral part of a collaborative relationship;
- facilitates open communication so that families and professionals feel free to express themselves;
- creates an atmosphere in which cultural traditions, values, and diversity of families are acknowledged and honored;
- recognizes that negotiation is essential in a collaborative relationship; and
- brings the mutual commitment of families, professionals, and communities to the relationship, to help children with special needs and their families.
(PACER Center suggests checking with your insurance provider to see if these services are covered benefits for you.)
A Family-Centered Approach to Care Coordination
Barb Peterson is an expert on children with special health needs. She is a pediatric nurse practitioner, a care coordinator, and the parent of a young adult with a disability. In her job with U Special Kids, a University of Minnesota program that provides family-centered care coordination for medically fragile children, she uses knowledge from all three roles.
At U Special Kids, Peterson provides care coordination and comprehensive medical summaries for families of children experiencing complex health issues and special health needs. Her focus is on guiding clear and frequent communication among the family, medical specialists, community health care providers, educators, and others. She shares these thoughts on care coordination.
“Care coordination involves a broad array of activities that support children and their parents and caregivers, so that the physical, emotional, and psychosocial needs of the child are met,” Peterson said. She assists families with day-to-day problems and illness management to help avoid hospital admissions and prolonged stays. In addition, Peterson and her colleagues are alert to mental health issues, and they connect families to appropriate resources, as needed.
Care coordination is different from case management, Peterson noted. Case management is traditionally more limited than care coordination, she explained. Often a child may have a case manager in each of the systems providing care—education, social service, and insurance, for example—but the systems may be fragmented if the child does not have a care coordinator.
At its best, care coordination frees the child and family to participate in their home, community, and family activities to the greatest extent possible, Peterson said. In family-centered care, which respects the central role of family as parents, caregiver, advocate, and decision maker for the child, care coordination is vital.
A goal is to have parents become confident in making decisions about their child’s care. “Family members are assisted in developing advocacy skills so they can be active participants in advocating for the care of their child across settings and among service providers,” said Peterson.
“Parents, caregivers, and family members know their child best, and they are the key members on the care coordination team,” she continued. “A family-centered focus is imperative so that the needs of all the family members are considered. This way, the highest level of health can be promoted.”
In addition, a care coordinator can:
- Assist parents and professionals in negotiating who will coordinate specific tasks in the child’s care as needs and resources change.
- Anticipate needs so that mothers and fathers have time to “parent,” as well as provide care.
- Understand each family’s history, culture, and individual needs, so that the family receives sensitive, culturally competent care.
- Incorporate care appropriate to the developmental stage of the child and family.
- Help family members understand the systems involved in their child’s care and find ways to communicate their preferences to professionals.
“There is no one method that works for all families or for any one family all the time,” noted Peterson. “Coordinated care needs to be individualized for each child and family situation.”
IIIP Coordinates Services Among Schools and Public Agencies
Did you know that the education system also offers a service to coordinate efforts among schools and public agencies?
The service is from a state law and is called the Individual Interagency Intervention Plan (IIIP, pronounced “triple-i p”). It is available to children with disabilities and their families who receive special education services (from schools) and services from at least one other public agency.
The IIIP is both a process and a document. The process is an option. Everyone who provides services and supports can be at the same table with you to solve problems, coordinate services, and share resource information. The document is a standardized form that contains all the elements of the Individualized Family Service Plan (IFSP) or the Individualized Education Program (IEP) plus parts of other agencies’ plans. It replaces the other individual plans.