Health Equity for CYSHCN: What Does it Mean for Title V?
June 2019

And What are the Implications for MCH Leaders?

Paige Bussanich
Senior Program Manage, CYSHCN
The Association of Maternal & Child Health Programs

Kate Taft
Associate Director, Child and Adolescent Health
The Association of Maternal & Child Health Programs


“When you think about health equity, what does that mean for children and youth with special health care needs (CYSHCN) in your state?”

More than 30 Title V CYSHCN directors recently discussed this question at the 2019 meeting of AMCHP’s Leadership Institute for CYSHCN Directors (LICD). The meeting followed a presentation on “Health Equity and Leadership: Implications for Maternal and Child Health” by Tawara Goode from Georgetown University’s National Center for Cultural Competence. Goode charged everyone with thinking about health equity as social justice in health. That is, no one is denied the possibility to be healthy because they belong to a group that has historically been politically, economically, or socially disadvantaged.

For Title V CYSHCN programs, this concept of health equity is rooted in its origins and the efforts of forward-thinking social reformers like Grace Abbot and Martha May Elliot, who pushed to include programs that focus specifically on children with disabilities as part of the original Social Security Act.[i] Title V CYSHCN directors and staff consider this every day in their work and programming to assess and  address gaps in access and quality in services and supports for optimal health and well-being, and to provide and promote family-centered, community-based, coordinated care for CYSHCN.

While there are many frameworks for advancing health equity, Goode shared seven factors that contribute to health disparities. Meeting participants considered those factors and how their programs and activities can reduce disparities for CYSHCN and advance health equity in their states. Below are some themes from that discussion.

            Built Environment – How do the physical parts of where CYSHCN and their families live, work, and play (e.g., homes, buildings, streets, open spaces, and infrastructure) affect their health and well-being? Are families limited by the location of providers as well as the number of providers with accessible equipment and facilities?

Potential activities and ideas:

  • Telehealth legislation
  • Virtual family support
  • Universal intake/referral
  • Regional collaboration to improve access to specialty care
  • Provide rural clinics
Discrimination, Biases, Racism – How does discrimination, bias, and/or racism affect the health and well-being of CYSHCN and their families? Do we regularly assess our team, contractors, providers, etc. for bias in the services we provide?

Potential activities and ideas:

  • Require cultural competence self-assessment for staff
  • Assess for bias in mentoring programs
  • Use client satisfaction/experience surveys
  • Include Culturally and Linguistically Appropriate Services (CLAS) Standards in all contracts—develop a CYSHCN measure
Insurance Coverage – How does the health insurance coverage status of CYSHCN and their families affect their health and well-being? Does insurance coverage play a role in who gets services and the quality of those services?

Potential activities and ideas:

  • Raise income level eligibility to serve more families
  • Global coverage for care coordination within CYSHCN program
  • Promote open enrollment periods
  • Collaborate with Medicaid to establish network adequacy expectations for providers
Differential Access to Health and Behavioral Care – Do we know the differences in access to health and behavioral care for CYSHCN and their families in our state? Does an imbalance in resources and funding create disparities in access?

Potential activities and ideas:

  • Data efforts to identify specific disparities that impact access
  • Behavioral health hub for all CYSHCN services
  • Incorporate adverse childhood experiences approach into developmental screening
  • If care coordination (or other services) are offered by different agencies for medical vs. behavioral health diagnoses, work together to create shared standards
Cultural Beliefs and Practices – Do families trust our programs, coordinators, providers, etc.? Do we serve all groups at the expected rate? How do we address stigma in our programs?

Potential activities and ideas:

  • Person-centered agreement and service plan
  • Consider culture/beliefs in teleconsultations
  • Utilize community health workers or cultural brokers
  • Develop one relationship at a time in order to build trust
  • Cultural competence training/professional development for all levels of experience
Public Health Funding and Policy – Does funding and policies for CYSHCN and their families close or create gaps in who gets services and quality of those services? Do policies or funding decisions prioritize underserved or disadvantaged populations?
 Potential activities and ideas:

  • Provide benefits to underserved CYSHCN populations
  • Pilot innovative payment models to fund care coordination
  • Train providers and families on care coordination
  • Use funding to support health equity zones/ services from community organizations and programs that reflect diverse populations
Socioeconomic Status (SES) – Do program eligibility or financial assistance requirements related to SES leave out CYSHCN and families who need these services? Do we have the data we need on SES for our CYSHCN and their families to know if our programs are reaching who they need to reach?Potential activities and ideas:

  • Increase outreach clinics
  • Change federal poverty level percent, if flexible, for financial assistance eligibility for CYSHCN
  • Examine eligibility requirements to ensure families aren’t missed; explore common intake form between programs (Medicaid, CYSHCN, SNAP, WIC, etc.)
  • Learning community among regional centers to look at SES data collected and make sure we have the information we need to make programming decisions


Health disparities can be a metric to measure progress toward achieving health equity. The upcoming 2020 Title V Needs Assessment is a prime opportunity to better understand how factors contribute to inequities for CYSHCN in a specific state or community, and what can reduce these disparities.

For example, while unmet health needs and access to care are priority needs for CYSHCN, directors noted there is a need for data that goes deep enough to understand what specific factors (like those above) drive issues in access to care. It is helpful to know a disparity exists, but to develop action plans that address the disparity, one needs to understand how and why CYSHCN and their families bear a heavier burden of inequities in access to and quality of care. Additionally, this identifies a need to assess whether populations served reflect populations in need, as programs usually examine disparities in outcomes, but perhaps not in expected vs. actual service provision. From an equity standpoint, it is also helpful to assess in what ways do social, economic, and political systems shape these inequities, and what explains the production, maintenance, and persistence of these inequities. Are there programs or policies that perpetuate disparities? And what conditions might reverse these inequities? CYSHCN Directors felt strongly about hearing needs straight from families, YSHCN, and communities. Using needs assessment strategies such as focus groups, community cafes, and parent surveys can help ensure diverse communities are represented in the needs assessment, and provide qualitative data to better understand equity for CYSHCN and their families.

[i] Hitchcock LI, Mulvihill BA. The Early Years of Title V: Extending and Improving Care for Children with Special Health Care Needs, 1935-1941. Maternal Child Health Journal (2011) 15:139-147.