Family Engagement at the Systems Level: A Framework for Action.

While family engagement at the individual level of health care, such as families partnering with providers in decision-making about health care for an individual child has been well studied, family engagement in systems-level activities (e.g., participation in advisory and other decision-making groups, or creation and revision of policies) that impact the health services families and children receive has not. This note from the field presents a framework that describes the information and supports that help families partner with professionals and contribute to systems-level activities. Without attention to these components of family engagement, family presence and participation may be only token. We engaged an expert Family/Professional Workgroup whose members represented key constituencies and diverse geography, race/ethnicity, and areas of expertise; conducted a review of peer-reviewed publications and grey literature; and conducted a series of key informant interviews to identify best practices for supporting meaningful family engagement at the systems level. Based on an analysis of the findings, the authors identified four action-oriented domains of family engagement and key criteria that support and strengthen meaningful family engagement in systems-level initiatives. Child- and family-serving serving organizations can use this Family Engagement in Systems framework to support meaningful family engagement in the design of policies, practices, services, supports, quality improvement projects, research, and other systems-level activities.

Access to care among children with disabilities enrolled in the MassHealth CommonHealth Buy-In program.

Children with disabilities utilize more health-care services and incur higher costs than other children do. Medicaid Buy-In programs for children with disabilities have the potential to increase access to benefits while reducing out-of-pocket costs for families whose income exceeds Medicaid eligibility. This study sought to understand how parents and caregivers of Massachusetts children with disabilities perceive access to care under CommonHealth, Massachusetts's Medicaid Buy-In program. Parents and caregivers ( n = 615) whose children were enrolled in CommonHealth participated in a survey assessing the impact of the program. Qualitative data were coded across five access domains-availability, accessibility, accommodation, affordability, and acceptability. Data suggest that CommonHealth improves access to care for children with disabilities by providing the benefits that were limited in scope or unavailable through other insurance before enrollment and by making available services more affordable. Policy and administrative changes could improve the program and further increase access to care for children with complex, costly conditions. Adopting a Medicaid Buy-In program may be an effective way for states to create a pathway to Medicaid for children with disabilities whose family income is too high for Medicaid and who have unmet needs and/or whose families incur high out-of-pocket costs for their care.

The Louisiana Family Opportunity Act Medicaid Buy-in Program.

OBJECTIVES: The Family Opportunity Act Medicaid Buy-In Program (FOA) allows states to expand Medicaid coverage to children who meet selected disability and income eligibility criteria. FOA programs may help address family financial hardship as a result of underinsurance. We provide specific information about the FOA program and report the first results of a survey of parents or guardians of children with disabilities who were enrolled in Louisiana's FOA program. METHODS: A convenience sample of families enrolled in the program (N = 52) responded to questions derived from the National Survey of Children with Special Health Care Needs (CSHCN). These results were compared to two groups of Louisiana families of CSHCN that had responded to the 2009/10 national survey. RESULTS: Data suggest that children enrolled in the Louisiana FOA are younger than those enrolled in Supplemental Security Income, are more likely to have functional losses, and, perhaps due to their age, are less likely to have difficulty with anxiety, depression, or behavior problems. FOA families are less likely than families in either group to report receiving help with care coordination, and more likely to report financial problems due to their child's health. Respondents were also more likely to report that they received all the therapy services and specialty care they needed. CONCLUSIONS: The FOA program thus appears to be filling a niche in coverage needs among families of children with disabilities in Louisiana.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009-2010.

OBJECTIVE: To report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009-2010 and assess changes since 2001. METHODS: Data were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009-2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009-2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. RESULTS: The proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009-2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. CONCLUSIONS: There has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.

Parent partnerships in communication and decision making about subspecialty referrals for children with special needs.

OBJECTIVE: To describe factors that influence parent-clinician partnerships in information exchange and shared decision making (SDM) when children with special health care needs are referred to subspecialists. METHODS: We conducted focus groups with parents of children with special health care needs and pediatric primary care and subspecialty clinicians about how to include parents as partners in information exchange and SDM. Five parent and 5 clinician groups were held to identify themes to inform the development of interventions to promote parent partnerships; evaluate a prototype referral care plan and related parent supports as one example of a partnership tool; and compare the views of parents and clinicians. We used investigator triangulation and member checking to improve validity. RESULTS: Nineteen parents and 23 clinicians participated. Parents discussed partnerships more easily than clinicians did, though clinicians offered more ideas as sessions progressed. Parents and clinicians agreed on the importance of 3-way communication and valued primary care involvement in all stages of referral and consultation. SDM was seen by all as important; clinicians cited difficulties inherent in discussing unclear options, while parents cited insufficient information as a barrier to understanding. Use of a brief referral care plan, with parent coaching, was embraced by all parents and most clinicians. Clinicians cited time pressures and interference with work flow as potential barriers to its use. CONCLUSIONS: Parents and clinicians endorse partnership in referrals, though relatively greater enthusiasm from parents may signal the need for work in implementing this partnership. Use of a care plan to support parent engagement appears promising as a partnership tool.

Children with special health care needs: acknowledging the dilemma of difference in policy responses to obesity.

Children with special health care needs (SHCN) account for part of the increasing prevalence of childhood obesity in the general population and can face an elevated risk for obesity. The federal government, in partnership with states, has assumed the role of steward for this vulnerable population and supports a network of services designed to promote their health through increased access to quality health services. Addressing obesity-related health risks among children with SHCN requires policies that support family- and community-based initiatives in addition to health services. We discuss the ethics of child obesity policy from the perspective of children with SHCN and their families, and identify salient issues to optimize benefits for children and families. We refer to the dilemma of difference to identify policy concerns that are specific to children with SHCN and ethically may require different approaches. Determining the appropriate mix of inclusive and special obesity prevention initiatives for children with SHCN and identifying approaches to ensure their full participation in community-based obesity prevention activities present challenges. Children with SHCN from low-income and minority communities are particularly vulnerable and warrant special attention.