Issue Brief March 2018 How California Children’s Services Programs in the 21 Whole-Child Model Counties Engage with Families by Holly Henry, PhD, Allison Gray, MA, and Edward Schor, MD Abstract When families are engaged in their children’s care – including being provided with the support necessary to allow meaningful participation – health care systems improve, the quality of care improves, and children and families are better served. This brief examines how families are currently engaged in the California Children’s Services (CCS) program and provides suggestions for how family roles could be enhanced. Between May 2016 and June 2017, with support from the Lucile Packard Foundation for Children’s Health (LPFCH), an online survey on family engagement was sent to county CCS program administrators. Results from the 21 counties that will soon transition children to Medi-Cal managed care are analyzed in this brief. Fifteen of the 21 counties seek input from families, primarily through satisfaction surveys (n=12). Four counties have Family Advisory Committees. The most common barrier to family engagement identified by respondents was budget limitations (n=11). The most common benefit reported was increased awareness and understanding of family issues and needs (n=8). Just 5 counties assessed their family engagement efforts as good or very good. With enhanced family engagement efforts and better support to families, county CCS programs and Medi-Cal managed care plans that are assuming care for children enrolled in CCS can benefit from the results of meaningful family participation.1 Background Consumer participation in public health There are many opportunities to improve family programs has the potential to improve services engagement in the California Children’s and promote a more accessible, accountable and Services (CCS) program, including the newest appropriate system.2 However, families of change to the program under the California children with special health care needs Department of Health Care Services’ (DHCS) (CSHCN) in California have not been Whole-Child Model (WCM), under which consistently involved in policy and children will receive CCS medical services programmatic planning and decision-making through Medi-Cal managed care plans. with the government entities upon which they Nearly one-quarter of California families has a depend for services and supports.3 child with special health care needs. How California Children’s Services Programs in the 21 Whole-Child Model Counties Engage with Families www.lpfch.org/cshcn Consequently, more than one million children In 2014, LPFCH supported research on family and adolescents in the state have been identified engagement among more than 60 public as having a chronic or complex health agencies and programs in California that serve condition4 and approximately 200,000 of them, CSHCN.9 The research found that some state age birth to 21, are actively enrolled and served and local government entities do incorporate by the CCS program,5 which is a part of the and support family engagement, but overall Integrated Systems of Care Division of DHCS. involvement is inconsistent. Where families do Eligibility for the program is based on specific participate, the roles they play in program medical diagnoses and family income.6 planning, implementation and policy-making, and the support they receive to enable CCS is funded in part through a federal Title V meaningful participation, varies tremendously. Maternal and Child Health Block Grant that provides core funding to states to improve the Family engagement has many beneficial health of mothers and children. In California, outcomes, including better quality of care, Block Grant funds are divided between the improved quality of life, decreased parental Maternal, Child and Adolescent Health anxieties and fears, reductions in health care Program (MCAH) of the Department of Public costs, improvement in families’ Health and the Integrated Systems of Care communications and relationships with health Division of DHCS. professionals, increased patient, family and provider satisfaction, and more efficient use of Federal guidance related to the Block Grants services.10 To create a high-quality system of encourages states to consistently engage care, the family perspective must be actively families/consumers in partnership with their pursued and incorporated at all levels of the state maternal and child health programs. The health care system – direct care, organizational federal Maternal and Child Health Bureau design and governance, and policymaking.11 (MCHB) defines family/consumer partnership as “the intentional practice of working with In California, while there Given their families for the ultimate goal of positive is a need to broadly responsibilities for outcomes in all areas through the life course. increase involvement of quality of care, the Family engagement reflects a belief in the value families in programmatic plans also may of the family leadership at all levels from an and policy activities, want to enhance individual, community and policy level.”7 State adoption of the Whole- the roles families programs are asked to document their efforts to Child Model provides an have played under sustain and diversify family participation. While opportunity to examine the CCS program. state Title V funded programs are aware of the existing family engagement efforts and identify high value the MCHB ascribes to family areas for improvement. In 21 counties, the participation, public health programs serving DHCS is shifting responsibility for the medical CSHCN report higher levels of family care of CCS-enrolled children from the engagement than maternal and child health counties’ CCS programs to five Medi-Cal (MCH) programs. However, there is significant managed care plans. These plans are required by room for improvement in both programs.8 state legislation (SB586) to establish family How California Children’s Services Programs in the 2 21 Whole-Child Model Counties Engage with Families Lucile Packard Foundation for Children’s Health advisory committees. Since the health plans will Gathering Input from Families be building on CCS precedents and activities, their family engagement planning and activities Over two-thirds of the programs (n=15) can benefit from understanding how families are reported that they encourage or seek input from currently engaged in the 21 counties. Given families. More than half of the counties gather their responsibilities for quality of care, the this input via surveys/satisfaction surveys plans also may want to enhance the roles (n=12). A national survey by AMCHP found families have played under the CCS program. In that 100% of state CSHCN programs sought addition, CCS programs in the other 37 counties input from families, so county programs in could benefit from comparing their family California are not doing as well in this regard.12 engagement efforts with those described in this Additional ways that input is gathered are listed issue brief. in Table 1. Methods Table 1: How Programs Gather Input from Families In May 2016, the Association of Maternal and Mode for gathering Number Percent of Child Health Programs (AMCHP) invited all input of counties* 58 county CCS administrators to complete an counties online survey on family engagement in their Surveys/satisfaction 12 57% programs and policies. Forty-five respondents, surveys representing 33 of the 58 counties in Family representatives on 3 14% California (57%), completed the survey. Of other advisory those respondents, 10 were from counties in groups/task forces Partnerships with family 3 14% which the WCM will be implemented. organizations In June of 2017, with the encouragement of the Families representatives 2 10% as Family Health Liaisons DHCS, the Foundation sent out an identical Family representatives on 1 5% survey to the county CCS administrators for the CCS staff 11 additional counties that will be implementing Family representatives on 1 5% the WCM to obtain their responses. The County Family-Centered findings in this brief are based on the responses Care Committee from the 21 WCM counties only. The counties Focus groups/structured 1 5% are: Del Norte, Humboldt, Lake, Lassen, Marin, interviews Mendocino, Merced, Modoc, Monterey, Napa, Public hearings with 1 5% opportunities to provide Orange, San Luis Obispo, San Mateo, Santa input Barbara, Santa Cruz, Shasta, Siskiyou, Solano, Providing opportunities 1 5% Sonoma, Trinity, and Yolo. for input through website * Respondents could select all that applied, so percentage will not total to 100. 3 How California Children’s Services Programs in the 3 21 Whole-Child Model Counties Engage with Families www.lpfch.org/cshcn Although programs do seek input from families, a specific meeting (n=4). Additional training family consultants are involved as activities are included in Table 3. representatives to program advisory groups, committees, task forces and workgroups in just Table 3: Types of Training Offered to 5 of the counties, and only 1 county describes Families extensive involvement (defined as more than Training Activity Number Percent of 75% of its program groups including families). of counties* counties Family Engagement Activities Specific meeting 4 19% preparation Program administrators were asked about Mentoring 2 10% several specific family engagement activities. Program/project 1 5% Seven counties currently operate one or more of management skills these activities. Four have a Family Advisory Awareness and 1 5% Committee, 4 have a parent health liaison and 2 education have a Family-Centered Care Workgroup. None at this time 14 67% * Respondents could select all that applied, so percentage Table 2: Counties Reporting Specific Family will not total to 100. Engagement Activities Compensation for Families San Mateo Unlike for public employees, participation in Del Norte Family Merced agency activities by external family Modoc Engagement Shasta Napa Yolo Activity representatives uses time and effort that would otherwise be devoted to family matters or their Family Advisory X X X X own work. Family organizations have Committee consistently asked for various forms of Parent Health X X X X compensation and support for family Liaison representatives. Four counties provided Family-Centered X X information about the ways they facilitate and Care Workgroup compensate families for their participation in program activities. The examples they Two counties employ family members as provided include: program staff either directly as a county employee or through a contract with another Transportation stipends and mileage reimbursement from county CCS agency. This is much less common in these program funds provided per event in the counties than is reported by states nationally, amount of $10 to $24 where 82% of programs employ a family An honorarium/participation stipend member as staff.13 from the county Health Plan funds provided per event in the amount of Some county programs provide training for $50-$74 families participating in program activities. The An hourly wage from county CCS most common training activity is preparation for program funds provided via a contract How California Children’s Services Programs in the 4 21 Whole-Child Model Counties Engage with Families Lucile Packard Foundation for Children’s Health with a parent-led community-based Table 4: Reported Benefits of Family organization with the wage varying Engagement by activities Use of alternative ways for families to Benefit Number Percent of participate (website, email, Skype, of counties* video, conference call, webinar, counties social media) Increased awareness Meeting/event times occur during and understanding non-traditional hours and days, of family issues 8 38% evenings, weekends and needs Food is provided for families that attend On-site childcare is provided Improved planning during meetings and policies resulting in services Benefits of and Barriers to Family 6 29% more directly Engagement responsive to family needs Counties reported several valuable benefits as a Increased 5 24% result of family engagement. The most common family/professional benefits reported were increased awareness and partnership and understanding of family issues and needs (n=8), communication improved planning and policies resulting in Assistance in 4 19% services more directly responsive to family evaluating program needs (n=6), and increased family/professional goals, objectives, partnership and communication (n=5). These and performance and other benefits are listed in Table 4. measures Increased 1 5% Program administrators highlighted several availability of barriers to family engagement. The most family members common barriers were budget limitations (n=11) able to participate in including lack of resources/methods to pay training, public family participants for time/expenses (n=8). awareness, and policy development These and additional barriers are listed in Table 5. Increased 1 5% understanding of programs and issues by legislature, state officials and the general public * Respondents could select all that applied, so percentage will not total to 100. 5 How California Children’s Services Programs in the 5 21 Whole-Child Model Counties Engage with Families www.lpfch.org/cshcn Table 5: Reported Barriers to Family Engagement Barrier Number of counties Percent of counties* Budget limitations 11 52% Lack of resources/methods to pay family 8 38% participants for time/expenses Lack of staff time to train and/or supervise family 7 33% participants Family time constraints 7 33% Unable to use technology and/or social media as a 6 29% means of family engagement (ex. outreach to families, method of providing input, way for families to participate in program meetings) Difficulty keeping family members involved over 5 24% time Limited access to families who could engage with 3 14% the program because the program provides few/no direct services Difficulty identifying family participants 2 10% Lack of training for family participants to support 2 10% them in roles Concerns about maintaining confidentiality of 2 10% program data and information Difficulty recruiting representation across 1 5% geographic areas or from those in remote areas Difficulty with hiring system/merit system/civil 1 5% service requirements (lack of appropriate job classifications, difficulty meeting job qualifications) Lack of knowledge/support from superiors about 1 5% the value of family engagement Hiring freezes 1 5% Difficulty getting families interested in prevention 1 5% * Respondents could select all that applied, so percentage will not total to 100. Program administrators reported several training Encouragingly, 17 counties are interested in needs so that they could better partner with receiving training or getting more information families. The most common training need was about how to increase family engagement in linkages to family groups in their community their programs. Additional training needs are (n=6). More than one third of program staff listed in Table 6. were not sure of their training needs (n=8). How California Children’s Services Programs in the 6 21 Whole-Child Model Counties Engage with Families Lucile Packard Foundation for Children’s Health Table 6: Reported Family Engagement Evaluation of Family Engagement Activities Training Needs of Programs Counties did not give themselves high grades Training Need Number Percent for their effectiveness engaging families in of of program development and planning. Just 5 counties counties* counties rated their effectiveness as good or I’m not sure at this time. 8 38% very good. The remaining counties rated their Linkages to family groups 6 29% effectiveness as fair (n=9) or poor (n=7). None in our community Difference between 4 19% rated themselves as excellent. education and advocacy Over half of the counties reported no formal Opportunities to participate 4 19% in community of practice process to evaluate the impact and effectiveness on family engagement of family engagement (n=12). This is also a Opportunities to work with 3 14% problem shared by states among whom only Family Voices for input in 25% report formally evaluating their efforts.14 planning next steps related Seven counties use satisfaction surveys to to family engagement evaluate family engagement activities, 2 did an Policymaking/impacting 3 14% internal assessment, and 1 sought information public policy from outside family organizations. CCS/MCAH history, 3 14% legislation and programs Leadership skills 2 10% Areas for Improvement Public speaking 2 10% Models or examples of 2 10% Counties have opportunities to improve the way successful family staff members are taught about family engagement in MCAH engagement. Almost half of counties surveyed programs (n=10) do not provide any training for new and Developing skills to more 2 10% existing staff. A quarter provide ongoing staff broadly represent development and training (n=5) and 1 county families/family issues Cross-agency training (e.g. 2 10% includes family engagement requirements special education, office among staff roles and responsibilities for for children) performance evaluation. Opportunities for 2 10% mentoring/peer-to-peer Fifteen county programs reported no learning with best-practice requirement for family engagement in service states and state family provision contracts, subcontracts or grants with leaders other agencies, and another 4 counties reported Correspondence/effective 1 5% not knowing whether this was required. writing skills Data analysis/interpretation 1 5% Based on the results of this survey, there are None – there are no needs 1 5% at this time. many areas where family engagement efforts * Respondents could select all that applied, so percentage could be improved. County CCS Programs and will not total to 100. Medi-Cal managed care plans can implement 7 How California Children’s Services Programs in the 7 21 Whole-Child Model Counties Engage with Families www.lpfch.org/cshcn additional ways to gather input from families, Develop effective materials to educate such as including family representatives on families and agency staff on the advisory groups and task forces, and partnering importance of family engagement with family organizations. Counties should How to engage families effectively: consider establishing Family Advisory Committees, hiring parent health liaisons and/or Involve families as co-leaders in establishing Family-Centered Care Workgroups. planning and decision-making Compensation should be provided to family Use a standard measure to assess family engagement in the health care system representatives to account for the time and effort Include family engagement measures in necessary for their participation. The DHCS performance measurement should consider training opportunities for Convene informational hearings for program staff and Medi-Cal managed care plans families to inform elected officials of to support family engagement efforts. Finally, their needs in terms of policy changes family engagement efforts should be evaluated Suggestions for state level policy: and adjusted to maximize their impact. Include families’ perspectives in Recommendations developing health care policies and legislation Having formal, structured family engagement, Require an audit of family participation such as through forming a Family Advisory by all state agencies that serve CSHCN Committee, is an obvious and necessary starting Require each state agency that serves families to include family members in an point to improve quality and satisfaction with advisory or decision-making role health care. In addition to developing Family Develop mechanisms to enforce family Advisory Committees, county CCS programs engagement requirements and Medi-Cal managed care plans can Reward agencies and organizations that implement a range of strategies to enhance their perform well on pre-determined family efforts and better support families to participate. engagement measures Establish a cross-sector, state-level How to support family participation: Family Advisory Committee that will be responsible for developing a Provide or support training and standardized protocol for improving the mentoring to parents and family quality of services members to enable leadership roles Assure adequate funding to support the Provide supports such as childcare, practice of family engagement by stipends for travel and participation government agencies that serve children Identify and partner with support networks for families – for example the When families are appropriately engaged Family Resource Centers Network of and have been provided with the support California and Family Voices of necessary to allow effective engagement, California health care systems improve, the quality of care provided improves, and children and families are better served. How California Children’s Services Programs in the 8 21 Whole-Child Model Counties Engage with Families Lucile Packard Foundation for Children’s Health References 1. Marbell, P. (2017). Engaging families in improving the health care system for children with special health care needs. Palo Alto, CA: Lucile Packard Foundation for Children’s Health. 2. Ibid. 3. O’Sullivan, M. (2014). It takes a family: An analysis of family participation in policymaking for public programs serving children with special health care needs in California. Palo Alto, CA: Lucile Packard Foundation for Children’s Health. 4. Child and Adolescent Health Measurement Initiative. (2013). Children with special health care needs: A Profile of key issues in California. Palo Alto, CA: Lucile Packard Foundation for Children’s Health. 5. Stanford Center for Policy, Outcomes, and Prevention. (2017). Analysis of California Children’s Services claims data. As cited on www.kidsdata.org, a program of the Lucile Packard Foundation for Children’s Health. Retrieved on February 15, 2018. 6. While the program is primarily for low income children, CCS covers specialty care for medically- eligible children in higher-income families when the cost of their child’s care reaches a certain level. 7. U.S Department of Health and Human Services, Health Resources and Services Administration. (2015). Title V maternal and child health services block grant to states program: Guidance and forms for the Title V application/annual report. Washington, DC: U.S. Government Printing Office. 8. Association of Maternal and Child Health Programs. (2016). Family engagement in state Title V maternal and child health and children with special health care needs programs: A compilation of survey results. Washington, DC: Association of Maternal and Child Health Programs. 9. O’Sullivan, M. (2014). It takes a family: An analysis of family participation in policymaking for public programs serving children with special health care needs in California. Palo Alto, CA: Lucile Packard Foundation for Children’s Health. 10. Marbell, P. (2017). Engaging families in improving the health care system for children with special health care needs. Palo Alto, CA: Lucile Packard Foundation for Children’s Health. 11. Carman, K.L., Dardess, P., Maurer, M., Sofaer, S., Adams, K., Bechtel, C. & Sweeney, J. (2013). Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs, 32, 223-231. 12. Association of Maternal and Child Health Programs. (2016). Family engagement in state Title V maternal and child health and children with special health care needs programs: A compilation of survey results. Washington, DC: Association of Maternal and Child Health Programs. 13. Ibid. 14. Ibid. ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children's Health is a public charity, founded in 1997. Its mission is to elevate the priority of children's health, and to increase the quality and accessibility of children's health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation encourages dissemination of its publications. A complete list of publications is available at http://www.lpfch.org/publications CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 9 How California Children’s Services Programs in the 9 21 Whole-Child Model Counties Engage with Families