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Breakout Session Discussion Summary: Families of CSHCN will participate in decision making at all levels and will be satisfied with the services they receive in managed care settings

Holly Grason, National Policy Center for CSHCN - Group Facilitator

I. Contributions of the Grantees

• In New Hampshire, a family support coordination system has been developed (through the developmental disabilities network) in communities statewide.

• New England SERVE’s project developed a family survey and a provider survey that can be used by MCOs to collect information to guide their services on behalf of the CSHCN population. Data collected with NE SERVE surveys provides the Neighborhood Health Plan with feedback regarding their efforts to provide CSHCN with a medical home.

• The Institute for Child Health Policy (Florida) analyzed statewide survey data on medical home/quality of care specific to racial and ethnic groups; they provided information to top administrators of MCOs about differences in satisfaction with care found.

• The Children’s Hospital and Regional Medical Center in Seattle conducted outcome studies specific to CSHCN.

II. Collaborators

Respite care providers; legislators and legislative staff; Title V program leaders and staff; pediatric providers. One project noted that the consultant on cultural competence that they hired to facilitate portions of a conference proved to be a very valuable partner in a number of related activities. Workgroup participants noted that two groups in particular often are absent from partnerships in family efforts -- mental health care constituents and providers, and families/consumers and providers from the blind, and hearing impaired communities. Their absence from collaborations was noted to be related to "culture" and to service system structural issues.

III. Challenges

• Engaging parents of CSHCN who may themselves have substantial needs in family involvement activities/work is an area requiring attention. To date, most efforts have targeted "seasoned" parents who have been success in learning about and navigating the system. This approach, however, has resulted in representing a limited perspective. A strategy to address this situation might be to pair experienced families with those just beginning their involvement.

• The concepts of family advocacy/policy are quite abstract and difficult to communicate effectively.

• Cultural barriers exist, even in attempts to collect information on satisfaction with care. Not only is language translation sometimes particularly difficult (e.g., Haitian/Creole, Vietnamese), but family consideration of or communication about such issues is sometimes contradictory to cultural norms.

• Convincing MCOs and health facilities/programs (e.g., hospitals) to include family representatives in membership of key/policy standing committees (e.g., ethics committees in hospitals).

IV. Lessons Learned

• One project participant noted that "Families are the most faithful members of our advisory board." Nonetheless, not all families are comfortable being involved at all levels (state policy, plan administration, etc.). There is a need to match the skills, interests, and comfort level of each family with relevant activities.

• Preparing and supporting families for their involvement in programs and policy is time and resource intensive. Investments of this type are critical to effectiveness. Beginning business/advisory group meetings with everyone giving an update about their family since the prior meeting can set a "good tone" and promote group cohesion and sustained involvement.

• Moreover, families always should be compensated for their time and reimbursed for their expenses related to their involvement. In addition, there is a need to pursue multiple vehicles for family involvement. For example, families cannot always make it to meetings because of work/CSHCN/other child or family responsibilities. The Hood Center informally surveys families about their involvement in the project. Feedback revealed that families felt that they were asked to attend too many meetings. A remediating strategy might be found in making arrangements to include family members via conference call.

• "You can't underestimate the value of top MCO leadership with commitment to family participation." MCO administrators need and want directive messages about what they should do, how best to benefit from involvement of families in the organizational structure and processes. Provide MCO administrators with clear and succinct information about family issues and family involvement; give them "take home" messages and, where possible, tools for self-assessment (note: the group identified development of self-assessment tools re: family involvement in MCOs as an activity that can/should happen promptly). Creating/using a video presentation about family involvement with MCO administrators may be an effective and efficient strategy for delivering such strategies. Messages need to identify "return on investments" (ROI) for MCO administrators.

• Where possible, engage legislators/legislative staff in projects. One project reported that a state legislator who was participating in one of their working groups became so challenged by an issue discussed, that he drafted and pushed through legislation to correct the identified problem.

• Place family resource parents (to advise medical providers and provider organizations and family-centered care/family involvement) in large communities.

• Engage the business sector, and purchasers (of insurance) in the community's discussions related to family involvement. Possibly create family consultant positions and resource centers for families within large companies.

V. Vignette

Families with CSHCN in Oregon and Washington State requested and secured funds for the Providence Health Systems project to support the families’ planning and convening a "Mission Possible" conference. Each segment of the conference was initiated with a family story; administrative and provider perspectives on the story were then provided. This format proved highly effective in bringing all participants onto the same page so that consensus-based solutions could be identified.

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