Race, ethnicity, family income, immigration status, language spoken at home, and disability status impact access to health insurance coverage, health care services, and health outcomes for children and youth with special health care needs (CYSHCN). Systems of oppression such as racism, xenophobia, and ableism serve as the root causes of these financing and coverage inequities and create an uneven playing field whereby some groups of CYSHCN are less likely to get the care they need and more likely to face barriers to achieving optimal health and functioning. For more information on addressing health inequities for CYSHCN, read the Catalyst Center’s Equity Tutorial.

Title V and family support organization staff members have identified several barriers to achieving health equity among CYSHCN. Accessing insurance coverage is difficult for some immigrant families, as undocumented individuals in most states are not eligible for Medicaid coverage. Families raising CYSHCN whose incomes are above the Medicaid eligibility threshold also struggle to obtain adequate insurance coverage. The complexity of health insurance, health care systems, and enrollment process for programs such as Home and Community Based Services waivers also presents a barrier to equitable access to care. Several Title V agencies additionally identified that families living in rural areas often have more difficulty accessing resources.

However, Title V programs, Medicaid agencies, and family leader organizations have developed strategies to promote health equity including developing partnerships that pool resources and leverage organizational expertise, ensuring staff are representative of the populations served, and maximizing outreach and enrollment efforts to reach CYSHCN with marginalized identities. Many Title V programs offer equity and cultural competence trainings to their staff members, use a language line or telephone translation services, and engage in equitable family engagement to inform their health equity work.

Social determinants of health (SDOH), also called health-related social factors, are a main focus of health equity work. For more information about state Medicaid programs working to provide SDOH supports, visit the Medicaid Waivers Financing Strategies page.

Ensure Access for Specific Populations

North Carolina Title V employs a Minority Outreach Coordinator who, in addition to engaging in direct outreach with marginalized populations in the state, shares tailored outreach materials with pediatricians, advanced practice providers, and family physicians who care for children to encourage families to enroll in Medicaid or CHIP.

In order to reach individuals in a rural area of the state, New Hampshire Title V hired a care coordinator who lives in that county. Having someone from this area on staff helps to ensure that CYSHCN across the state can access all of Title V’s services, regardless of where they live.

The Vermont Title V program conducted interviews with marginalized populations in their state, including the Abenaki Tribe and immigrant populations, to identify strategies to improve health department EPSDT outreach. To conduct the interviews, staff and interns worked with cultural brokers from the Leadership Education in Neurodevelopmental Disabilities (LEND) program at the University of Vermont. Title V staff used findings from the interviews when collaborating with the state Medicaid agency and a plain language specialist to improve outreach materials. Vermont’s Title V program now has a Health Equity lead as part of the VT Department of Health’s new Health Equity and Community Engagement Team.

Supporting Indigenous Communities

The Native American Coordinator at Oklahoma Family Network, the state’s Family Voices affiliate, conducts outreach with Native American communities in the state to educate them about health care financing options including Medicaid and Home and Community Based Services (HCBS) waivers.

The Navajo Nation in New Mexico has their own Family-to-Family Health Information Center, Navajo Family Voices at Indian Country Grassroots, which Title V collaborates with for outreach activities, Medicaid enrollment support, referrals for HCBS waivers, and ensuring that families are enrolled in the best Medicaid Managed Care or fee-for-service plan for their needs.

Medicaid Equity Strategies

New Jersey’s Medicaid Managed Care contracts require all Medicaid providers to have training in cultural competence. To help provide this training, the state Department of Health funds an annual Cultural Competence Conference put on by the Statewide Parent Advocacy Network (SPAN) and the New Jersey Statewide Network for Cultural Competence. Each year, the conference focuses on cultural competence within a different population, such as those who are deaf or hard of hearing, immigrant families, and CYSHCN.

Title V staff members in Rhode Island provide technical assistance to the state’s Medicaid Accountable Entities, which are ACOs, regarding social determinants of health, reducing health care barriers, and addressing upstream structural barriers to promoting wellness. Two full-time staff members are dedicated to this role, which is supported by the Rhode Island Department of Health Equity Institute.

Data to Support Equity Work

During the COVID-19 pandemic, the Arizona Primary Care Office developed an interactive map of clinics offering telemedicine services on a sliding fee scale. Individuals can use the tool to search for the closest clinic using their ZIP code.

In Florida, Title V regional specialists reached out to primary care practices to identify those that are certified as Patient Centered Medical Homes (PCMH) and serve CYSHCN. Title V staff then mapped these providers to identify gaps in access to care. When average per capita income was overlayed on the map, Title V found that less populated areas and areas with lower per capita income had little to no PCMH providers. To support practices in becoming PCMHs, Title V staff conduct outreach and readiness assessments to encourage providers to join a PCMH transformation initiative, called HealthARCH, which is run by the University of Central Florida.

Addressing Family Financial Hardship

Missouri’s Title V program contracts with the nonprofit organization United 4 Children to support families raising CYSHCN in finding childcare and to work with childcare providers to meet the needs of CYSHCN. United 4 Children Inclusion Specialists can provide lists of childcare providers to families, reach out to providers to make initial contacts for families, and provide on-site observation, technical assistance, short-term consultation, and training for childcare providers. All of these services are provided free of cost to families and childcare providers.

Arizona’s CYSHCN program partners with the state’s Bureau of Nutrition and Physical Activity to provide inclusion resources to childcare facilities participating in the state’s Empower Program. The Empower Program engages childcare providers in trainings and offers tools to support them in meeting standards that promote health and wellbeing. Title V supported the development of the Inclusion in Child Care Settings online learning module, which, as of 2020, had been taken by over 1,000 individuals. Facilities that participate in Empower receive a 50 percent reduction in licensing fees.

Colorado Title V partners with the organization Get Ahead Colorado for outreach related to the Earned Income Tax Credit (EITC). Their outreach focuses on populations who can benefit most from tax credits, including rural and non-English speaking households, immigrants, refugees, and low-wage workers. According to the Colorado Department of Public Health and Environment, increasing access to tax credits can reduce family financial hardship, boost food security, and improve child health.