Work Group Report: Family-Centered Care

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27 people from diverse backgrounds, including families, gathered in a four hour break-out session, as part of the Parenthood in America Conference, to address the vital importance of families becoming more involved in health care services and systems. We agreed that families need to obtain, in a systematic way, clear information to serve as the basis for decisions affecting the health of their children. Parents of children with special needs have unique responsibilities and stresses with which to contend.

Using a resiliency focus, we need to build systems that recognize that the vast majority of parents want to have healthy families, to know their options, and to be knowledgeable in an increasingly complex health care system.

Purpose of Work Group:

To foster awareness of family-centered care and to expand networking of people and agencies involved in family-centered care in the Midwest and the Nation.

Definition of Family-Centered Care:

"Family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients and families. It can transform the health care system as we I know it in the United States today. It is the way to provide quality health care."

The group addressed the question, "How can health care institutions and organizations include families in policy development, program planning, service delivery and evaluation?" The response was: to include parents at all phases of planning, decision making, implementation, and evaluation. The following are suggestions to make it possible:

• Allow families to feel their needs are valid, important, and a necessary part of the process.
• We need mechanisms to ensure that families are heard.
• Keep in mind the individual needs of the families, such as child care, and be flexible about the time of meetings.
• Recognize and respect the validity ofthe concerns that family members have .
• Recognize that the process of parents empowering themselves takes time and resources, and must be built on mutual trust.
• Families need to be involved in policy decisions. This requires a format and setting that include and encourage them to participate in a non-threatening way.
• Provide a support system with mentors for bringing in new parents into the system and new providers.
• Show and affirm the impact that parents have had on policy issues, so that they, as well as everyone else, can see that they made a difference.
• Outreach to identify and bring in new families to become involved.
• Include families with a wide variety of special needs, ranging from those that are severe and immediately apparent to those that may be less obvious at first.
• Include advocates in the process (changing policy, identifying gaps, etc.)

The following are suggestions that can be incorporated into current systems:

• Shift to treating the whole family by tailoring programs to individual family needs. As an example, "wrap-around programs" should include all family members
• Gatekeepers should become more responsive and flexible in their interactions with families who make requests that may go outside of the rules, but ultimately make sense.
• Spend more money on mental health care.
• Efficient "short term" physician visits are not enough. Physicians should have the flexibility to spend additional time with families, because good communication and trust require time.
• Identify key resource people and agencies in the community

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Mary Musk 3771 South 56th Street Greenfield, WI 53220 414 449 4777 or 414 541 9178 fax: 414 449 4774 e-mail: MaryMusk@aol.com

Richard Aronson Bureau of Public Health 1 West Wilson Street, PO Box 109 Madison, WI 53701-0309 608 266 5818 fax 608 267 3824 e-mail aronsra@dhfs.state.wi.us