Work Group Report: Family-Centered Care
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
- 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
- Identify key resource people and agencies in the community
How to work with managed care organizations in an empowering and family-centered way?
- Use contracts as leverage (accountability) for making family centered care an integral part of managed care.
- Evaluate if professionals such as occupational therapists have the specialized skills needed to take care of children with special needs
- Evaluate if HMO staff has skills to provide family-centered care.
- Develop consumer friendly customer service skills. This training to improve skills should
include family members to shape and play an active part in the training
- Develop a watchdog coalition that includes consumers and providers
- Establish a relationship between consumers and providers to reduce the fear that families are
"dictating" the care.
- Hire advocates within the HMO's to assist clients Hold parent leadership training on managed
- Assure funding for demonstration projects with accountability and evaluation of outcome
measures, including family satisfaction.
What do we do next, on a national level?
- Better connections among patient, whole family, and the physician (mentor program at the
clinical level so that the family more fully understands what the physician communicates).
- Expanded Home Visiting Programs
- Make sure that only one person is in charge of coordinating home visits.
- Health care system needs to be integrated into the relationship between the home visitor and the family
- Follow-up with new parents with at least a phone call
- Flexibility so that, in the end, all parties buy into the care plan.
- Set mutual goals and priorities
- Simplify systems to make them accessible to families. Access needs to be improved.
- Access to Resources both within the family and outside the family
- Access to Information
- Access to Health Care
- Access to Advocates
- Resources Available to provide information on Children with Special Needs and do follow-up beyond the nurse or provider
- Form Parent Advisory Committees that can have an impact on Medicaid at the federal level. This could lead to a reframing or restructuring of MA HMO's and a systematic and
ongoing integration offamily representation.
- Ability to obtain a second opinion covered by the HMO within the organization.
- Change with family input the way pharmacies communicate with insurance companies
- Develop Citizen Watchdog Coalitions to monitor all Insurance Companies.
3771 South 56th Street
Greenfield, WI 53220
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Bureau of Public Health
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Madison, WI 53701-0309
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Copyright © 1998 Mary Musk and Richard Aronson.
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