Core Outcome 5

Services for children with special health care needs and their families will be organized in ways that families can use them easily.

National Center to Address Core Outcome 5

Achieving Outcome 5 for all families will require a range of culturally and linguistically competent approaches. These approaches address the following aspects of community-based systems:

Services and Supports

Creating community-based service and support systems that identify cultural strengths, resiliency and needs of children, youth and families.
Assessing and assuring acceptability of the services and supports within the system in terms of:
- Family and community trust for the agencies or providers in the system,
- Family experiences of disrespect, bias or discrimination by agencies or providers,
- Location of services and supports,
- What services are called, and
- Diversity of staff of programs and providers
Assuring that programs, service providers and systems navigation supports (e.g. care coordination processes) address the language needs and preferences of families including: materials and approaches to informing the community about the services, intake processes, and service provision.
Addressing the impact of eligibility requirements for programs including income, diagnosis, and immigration status on access to services and supports.

Planning and Resource Allocation

Utilizing a rationale related to demographics of the area served for allocation of limited resources.
Creating policies and practices that minimize competition among families for resources.

Partnership and Collaboration

Working in conjunction with natural, informal support and helping networks within culturally diverse communities (e.g. neighborhood, civic and advocacy associations; local/neighborhood merchants and alliance groups; ethnic, social, and religious organizations; and spiritual leaders and healers).
Assuring that family-members and youth from diverse backgrounds are partners in community systems planning, implementation and evaluation.
Engaging community members to collaboratively create solutions that address barriers to care including:
- mistrust,
- disparate treatment,
- experiences of bias and discrimination and,
- failure to comply with Title VI of the Civil Rights Act and CLAS Standards (4-7).

The Evidence

Based on responses to the 2005-2006 National Survey of Children with Special Health Care Needs, there are significant disparities in achieving this outcome for Hispanic children. Families of children and youth with special health care needs who are Hispanic are significantly more likely that those who are not Hispanic of any race to report that Outcome 5, services are not organized in ways that families can use them easily was not achieved. Hispanic families are also significantly more likely to report that:

they did not get needed care coordination services,
they experienced difficulties in trying to use health services for their child during the past 12 months,
they experienced difficulties using those services because of language, communication or cultural problems with providers.

Thus, there appear to be cultural and language issues that must be more effectively addressed in building systems of services and supports that are easy to use.

Outcome #5: CSHCN whose services are organized in ways that families can use them easily

Nationwide

Race/ethnicity of child
Outcome #5: CSHCN whose services are organized in ways that families can use them easily
Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 6/20/09 from www.cshcndata.org

CSHCN whose families experienced difficulties trying to use health services for child during the past 12 months
Nationwide

CSHCN whose families experienced difficulties trying to use health services for child during the past 12 months
Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 6/20/09 from www.cshcndata.org

CSHCN whose families experienced difficulties using services for child because of language, communication or cultural problems with providers – all CSHCN ages 0-17 yrs
Nationwide

Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 6/20/09 fromwww.cshcndata.org

CSHCN ages 0-17 receiving effective care coordination
Nationwide

Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 6/20/09 from www.cshcndata.org

There are racial and ethnic disparities reported in receiving care coordination, a service that can help families navigate complex community systems. Children and youth with special health care needs whose families were black, black or Hispanic of any race, were significantly more likely than non-Hispanic white families to report that they never or only sometimes got the extra help they needed with coordinating their children’s health care.

Receipt of help with coordinating child's health care – CSHCN ages 0-17
Nationwide

Child and Adolescent Health Measurement Initiative. 2005/2006 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved [06/20/09] from www.cshcndata.org

Ngui and Flores( 2006) identified similar disparities in satisfaction with services and ease of use of services reported by parents of children and youth with special health care needs on the 2000-2002 National Survey of Children’s Health. While 25% of families overall reported problems with the ease of using services, there were significant differences based on race and ethnicity. On that survey, 35% of black parents and 34% of Hispanic parents reported difficulty in using services, compared with 23% of white parents.

Resources

References

Child and Adolescent Health Measurement Initiative. 2005/06 National Survey of Children with Special Health Care Needs, Data Resource Center for Child and Adolescent Health website. Retrieved 6/20/09 from www.cshcndata.org

Ngui EM, abd Flores G. (2006) Satisfaction with care and ease of using health care services among parents of children with special health care needs: the roles of race/ethnicity, insurance, language, and adequacy of family-centered care. Pediatrics.;117(4):1184-96.