Children and youth with special health care needs (CYSHCN) require services beyond those needed by children generally, yet they often face difficulties accessing high-quality health care. Of the over 15 million CYSHCN in the U.S., only 12.8 percent receive care in a well-functioning system,1 and 44.6 percent of families with CYSHCN report frustrations in accessing services.2 As states adopt strategies to improve systems of care for CYSHCN, many are prioritizing equitable access across populations.
Key barriers to care for CYSHCN include fragmented and uncoordinated systems, inadequate availability of services and specialists, difficulties accessing or using health coverage, and high costs. Many of these challenges are compounded for youth with more complex conditions3,4 and those who are “multiply marginalized.” Multiply marginalized youth are part of one or more marginalized groups (e.g., racial, ethnic, linguistic, economic, geographic) that intersect with their health needs or disability status.5 Compared to white, non-Hispanic CYSHCN, CYSHCN who are Black or Latinx are at particular risk of receiving infrequent, low-quality care,6 while American Indian and Alaska Native CYSHCN are less likely to be able to access specialty treatment or receive culturally sensitive services.7 For CYSHCN from families with low incomes or who live in rural settings, access to services and specialists is also a significant barrier, resulting in higher levels of unmet health needs.8, 9, 10, 11
To address these barriers and promote equitable access to systems of care, many states are prioritizing policy areas such as supports for family caregivers of CYSHCN, opportunities to improve access to and availability of providers and specialists for CYSHCN, collection and use of data on CYSHCN and quality of care, and behavioral health supports for families of CYSHCN and providers. This brief highlights state approaches and innovations across some of these priorities.
A National Focus on Equitable Systems of Care
Equitable systems of care provide all children with access to high-quality services and resources needed to reach their maximum health and well-being, regardless of disability status, race, ethnicity, language, income, gender, or geographic location. Health equity is a core component of several key national frameworks for systems of care for CYSHCN, including:
- The National Standards for Systems of Care for CYSHCN, which include cultural competency, linguistic appropriateness, accessibility, and family-centeredness in the foundational standards.12
- The National Care Coordination Standards for CYSHCN, which note that health equity is foundational in care coordination for CYSHCN, in addition to cultural and linguistic competency, accessibility, and partnership with families.13
- The Maternal and Child Health Bureau’s Blueprint for Change, which identifies health equity as one of its four critical areas for a well-functioning system.14
Supports for Family Caregivers
Family caregivers provide an estimated 1.5 billion hours of health services annually to CYSHCN at an average of 29.7 hours per family per week.15, 16 In delivering this extensive at-home support, caregivers of CYSHCN often report unmet health and social needs, financial burdens from foregone employment and earnings, and mental health conditions related to stress and isolation.17 Families of CYSHCN with complex conditions, those who are Black and/or Hispanic, and those who live below the poverty level are most likely to rely on family members for caregiving.18 As a result, the challenges and burdens that caregivers from these specific populations experience are amplified. States are prioritizing strategies to support family caregivers of CYSHCN, with a focus on underserved communities. Approaches include allowing family caregivers to receive Medicaid reimbursement, providing culturally competent trainings and peer supports, making respite care more accessible for caregivers, and offering behavioral health supports for caregivers.
Paid Family Caregiving
Colorado
Colorado allows family members of Medicaid-enrolled CYSHCN to be paid for providing care to their children by becoming licensed as certified nursing aides. The caregiver certification process includes a required nurse aide training program and two-part exam; however, the clinical component of the exam is only offered in English. State agencies, including the Department of Health Care Policy and Financing and the Department of Public Health and Environment, are exploring opportunities to administer the exam in additional languages and support accessibility for families who do not speak English as their primary language.19
North Dakota
North Dakota passed Senate Bill 2276 in April 2023, establishing a family caregiver service pilot project and cross-disability advisory council. The service pilot project will expand payments to legally responsible caregivers of individuals who require extraordinary care and qualify to receive home and community-based services through the state’s Medicaid 1915(c) waivers. The advisory council will support the pilot project and share feedback to the state’s Department of Health and Human Services on the design of a cross-disability children’s Medicaid waiver, which will provide services to support families caring for youth with various conditions and extraordinary needs.20
Trainings and Peer Supports for Caregivers
Oklahoma
Oklahoma’s Family Support 360° Center, funded through the state’s Title V CYSHCN Program, provides training, family and peer supports, and navigational assistance for Medicaid-eligible families of CYSHCN, with a focus on serving families from Hispanic and Black communities. The center has partnered with a state family network and community medical provider to conduct CYSHCN caregiver training on mental health supports for children with autism, attention-deficit/hyperactivity disorder, and related conditions. Training sessions include live interpretation services for Spanish-speaking families.21
Oregon
Oregon’s Title V CYSHCN program houses and partners with the Oregon Family-to-Family Health Information Center (ORF2FHIC) to support family caregivers of CYSHCN. In organizing trainings, listening sessions, toolkits, and a peer-staffed phone support hotline, ORF2FHIC prioritizes the availability of Spanish-language services. Title V and ORF2FHIC also collaborate with community partners that serve refugee and immigrant communities from Latin America and Africa to engage with families of CYSHCN from these populations and ensure supports are culturally competent and accessible.22
Strategies to Improve Access to Providers and Specialists
Families of CYSHCN, particularly those who are multiply marginalized, often face obstacles in obtaining quality care or receiving the specialized services they require.23 Challenges include barriers in families’ physical access to care, as well as limited provider availability. Issues of access may be compounded for families of CYSHCN with low incomes or who reside in rural communities and may result in CYSHCN not receiving care.24 While these families often need critical supports to access care, securing transportation often proves challenging, particularly for those who live a long distance from providers or specialists. Non-emergency medical transportation (NEMT) benefits can be essential for many CYSHCN families lacking transportation. Expanding available services, reimbursing for telehealth care, and providing families with access to technology and digital navigation support can also benefit families that face obstacles to accessing care.25, 26 At the provider level, workforce shortages among professionals who deliver specialized pediatric care (e.g., skilled nursing, home health care, behavioral health, etc.) are another key challenge related to access to services for CYSHCN.27 States are implementing strategies and policies that support access to providers and specialized care for CYSHCN, including expanded transportation, telehealth services, and provider supports (e.g., recruitment, consultation resources, Medicaid reimbursement, etc.).
Transportation
Texas
Texas Medicaid provides a unique support for members using the NEMT benefit by requiring contracted managed care organizations, and their subcontractors, that deliver transportation services to provide physical assistance to members who need to use wheelchair lifts or ramps to enter and exit vehicles.28 Drivers must also assist with placing mobility aids in the vehicle and folding wheelchairs.29 These efforts can help ensure adequate access for Medicaid beneficiaries, including the subpopulation of CYSHCN with complex medical and physical conditions, who have unique transportation needs.
Virginia
Virginia offers services to rural areas of the state through a collaboration between the University of Virginia (UVA) health system and the state health department. To reduce the drive time for families in need of clinical services, Virginia has staff travel to Southwest Virginia (SWVA)30 to provide specialty care, such as genetics, neurology, orthopedic, and neurodevelopment services, to CYSHCN families in rural communities. The UVA health system also manages the Care Connection for Children center in SWVA, which is a statewide network funded through the Title V CYSHCN program, to provide care coordination services to CYSHCN and their families.31
Telehealth
Michigan
Michigan’s Children’s Special Health Care Services Division collaborates with key statewide partners to lead the Michigan Pediatric Epilepsy Project, an initiative to improve health outcomes for children and youth with epilepsy, particularly those in rural and underserved communities.32, 33 Primary and specialty providers across the state engage through the Statewide Quality Improvement Network to learn about innovations and strategies to expand the use of telehealth and telemedicine for improving access to specialty care.34 Other network goals include health care transition, communication and co-management among providers, and shared decision-making.
South Carolina
South Carolina’s Title V CYSHCN program continues to strengthen and improve its established partnership with the Telehealth Alliance of South Carolina to create a provider network offering telehealth services to ensure equitable access to care.35, 36 This partnership is supporting expanded access to telehealth for CYSHCN, which can make specialty services more accessible in areas where these services are limited, such as rural regions of the state. Telehealth services are often more affordable for CYSHCN families with low incomes, particularly those that must travel long distances to access care.37
Provider and Workforce Supports
Ohio
Ohio’s Department of Mental Health and Addiction Services expanded access to peer support opportunities by adding youth and family peer credentials for individuals with lived experience to serve families with similar needs.38 Certified Youth Peer Supporters are innovative in that they specialize in youth and young adults, including CYSHCN, to help them navigate through recovery from mental illness and substance use disorder (SUD).39 As caregivers of individuals with behavioral health challenges, Certified Family Peer Supporters assist families in addressing their needs, navigating systems, and promoting recovery.40 SUD and mental health peer supports are scheduled to become reimbursable by Medicaid in 2024, a factor that can help recruit and boost interest in peer support positions.41
Washington
Washington’s Department of Health sponsors the Medical Home Partnerships Project, which supports providers who serve youth with co-occurring behavioral health and intellectual and developmental disability (IDD) needs, including CYSHCN. Project ECHO, operated through a partnership with the University of Washington,42 provides telehealth training and virtual support to clinicians and the community serving individuals with IDD to build capacity to care for individuals with IDD in their home communities.
Data Collection, Sharing, Use, and Quality Assurance
The availability of robust, adequate, and equitable data is crucial for states to identify and address health disparities or barriers that result in limited or reduced access to high-quality and coordinated care for CYSHCN and their families. Using sound data equity principles, investing in robust data collection, and sharing data across systems can ensure that state officials have the information necessary to understand the needs of CYSHCN and their families, design programs to meet those needs, and invest in policy solutions that improve care delivery across all CYSHCN-serving systems.43 Data are essential to establishing quality measures and engaging in dedicated cross-sector initiatives focused on improving quality of care for CYSHCN. States are engaging in quality initiatives through Medicaid managed care service delivery, public health programming, and value-based payment models. As such, states are prioritizing innovative data collection and sharing practices; risk assessments that identify care coordination needs, as well as behavioral health and health-related social needs, among CYSHCN; and cross-sector quality initiatives to support informed policy and programmatic decisions regarding supports for the CYSHCN population.
Demographic Data Collection and Use
Hawaii
Hawaii’s Title V CYSHCN program partners with the University of Hawaii Center on Disabilities Studies to conduct ongoing needs assessments of the CYSHCN population through surveys and community-based focus groups with youth and their parents. Surveys are available in multiple languages to encourage participation among underrepresented populations. To further engage youth and parents in a multi-faceted approach that supports equity and inclusion, Hawaii partners with the Department of Education to send out surveys through special education classrooms.44
Ohio
The Ohio Department of Health’s Bureau of Child and Family Health publicly shares 69 public health data sets through the DataOhio Portal and InnovateOhio Platform. These initiatives are led by the Ohio lieutenant governor and designed to make data more accessible to the public and enable state agencies to be more customer-centric and data-driven. The platforms include data from the Ohio Connections for Children with Special Needs system on diagnosed birth defects and congenital anomalies across the state, including breakdowns by race and ethnicity, to help identify risk factors, target prevention strategies, and inform service referral practices.45
Risk and Needs Assessments
Arizona
The Arizona Department of Health Services’ Office of Newborn Screening partners with the state’s Title V CYSHCN program to promote access to screenings that detect hearing conditions for newborns. Efforts include education and trainings on hearing health, in addition to resources, such as handbooks and appointment reminder tools, for families to access screenings. In alignment with the state’s sensory screening legislative requirements, the Arizona CYSHCN program also lends hearing screening equipment to early-learning facilities, home visitors, community health workers, and schools, with a focus on rural and high-volume urban settings.46
Pennsylvania
The Pennsylvania Department of Health uses Title V funds to support implementation of the Community to Home Program, which leverages community health workers (CHWs) to assess the needs of newly diagnosed CYSHCN who live in rural settings and meet financial eligibility requirements, with a focus on those from racial and ethnic minority groups. Through in-home visits, CHWs conduct assessments and collect information from families to determine their needs and develop a care management plan to support navigation of systems and referral to services.47
Medicaid Quality Initiatives
California
California requires Medicaid managed care plans to create a standardized protocol for assessing the health and social needs of CYSHCN and monitoring and improving their quality of care. Additionally, the Department of Health Care Services maintains dashboards with demographic and performance data on specific populations of Medicaid-enrolled youth, including those with complex medical conditions, many of whom are eligible and enrolled in the California Children’s Services program; those receiving specialty mental health services; and those in foster care.48
Utah
Utah Medicaid’s Healthy Outcomes Medical Excellence (HOME) is a managed care program designed to meet the behavioral and physical health care needs of CYSHCN who are dually diagnosed with a developmental disability and a mental illness. Using a medical home model, HOME coordinates primary and specialty care, mental health care, and other needed services.49 HOME reports performance measures for the Utah Department of Health’s managed care quality strategy and supports a performance improvement project.
Advancing Equitable Systems of Care Moving Forward
In addressing the needs of CYSHCN who have particularly complex needs and/or are multiply marginalized beyond their conditions, states continue to prioritize initiatives to collect and share data, improve quality of care, support family caregivers, and expand access to providers and specialists. As states adapt and implement these innovations, they can consider opportunities to target approaches to specific populations that experience the most significant access barriers and ensure families are meaningfully represented in decision-making processes. NASHP will continue to support states and identify efforts to make access to care equitable for CYSHCN.
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[12] Association of Maternal & Child Health Programs, and National Academy for State Health Policy. “Standards for Systems of Care for Children and Youth with Special Health Care Needs Version 2.0.” Lucille Packard Foundation for Children’s Health, June 2017. www.nashp.org/wp-content/uploads/2019/10/Standards-for-Systems-of-Care-for-Children-and-Youth-with-Special-Health-Care-Needs-Version-2.0.pdf.
[13] National Academy for State Health Policy. “National Care Coordination Standards for Children and Youth with Special Health Care Needs.” Lucille Packard Foundation for Children’s Health, October 2020. https://nashp.org/national-care-coordination-standards-for-children-and-youth-with-special-health-care-needs/.
[14] Houtrow, Amy, Alison J. Martin, Debbi Harris, Diana Cejas, Rachel Hutson, Yasmin Mazloomdoost, and Rishi K. Agrawal. “Health Equity for Children and Youth With Special Health Care Needs: A Vision for the Future.” Pediatrics 149, no. Supplement 7 (June 1, 2022): e2021056150F. https://doi.org/10.1542/peds.2021-056150F.
[15] Romley, John A., Aakash K. Shah, Paul J. Chung, Marc N. Elliott, Katherine D. Vestal, and Mark A. Schuster. “Family-Provided Health Care for Children With Special Health Care Needs.” Pediatrics 139, no. 1 (January 1, 2017): e20161287. https://doi.org/10.1542/peds.2016-1287.
[16] National Alliance for Caregiving. “Caregivers of Children: A Focused Look at Those Caring for A Child with Special Needs Under the Age of 18.” AARP Research, December 1, 2009. https://doi.org/10.26419/res.00062.007.
[17] Hoover, Clarissa G., Ryan J. Coller, Amy Houtrow, Debbi Harris, Rishi Agrawal, and Renee Turchi. “Understanding Caregiving and Caregivers: Supporting Children and Youth With Special Health Care Needs at Home.” Academic Pediatrics 22, no. 2 (March 1, 2022): S14–21. https://doi.org/10.1016/j.acap.2021.10.007.
[18] Romley et al. “Family-Provided Health Care.”
[19] Colorado Department of Public Health & Environment. “Maternal and Child Health Services, Colorado, Title V Block Grant, FY 2024 Application/FY 2022 Annual Report,” July 28, 2023, 132. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=CO&year=2024.
[20] Senate Bill 2276, Sixty-eighth Legislative Assembly of North Dakota (2023), https://ndlegis.gov/assembly/68-2023/regular/documents/23-0635-07000.pdf.
[21] Oklahoma State Department of Health. “Maternal and Child Health Services Title V Block Grant, Oklahoma, FY 2023 Application/FY 2021 Annual Report,” August 16, 2022, 191. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=OK&year=2023.
[22] Oregon Health Authority, Public Health Division, Center for Prevention and Health Promotion, Maternal and Child Health Section. “Maternal and Child Health Services Title V Block Grant, Oregon, FY 2023 Application/FY 2021 Annual Report,” August 16, 2022, 133-143. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=OR&year=2023.
[23] Abdi, Fadumo M, Deborah Seok, and David Murphey. “Children with Special Health Care Needs Face Challenges Accessing Information, Support, and Services.” Child Trends, February 13, 2020. www.childtrends.org/publications/children-with-special-health-care-needs-face-challenges-accessing-information-support-and-services.
[24] Hasan, Anoosha, and Emily Creveling. “Medicaid’s Transportation Benefit and Children and Youth with Special Health Care Needs (CYSHCN).” Boston University School of Social Work, Center for Innovation in Social Work & Health, The Catalyst Center; National Academy for State Health Policy, October 2022. https://ciswh.org/wp-content/uploads/2022/10/NEMT-Brief-Oct-2022.pdf.
[25] Centers for Medicare and Medicaid Services. “Telehealth.” Medicaid.gov. www.medicaid.gov/medicaid/benefits/telehealth/index.html.
[26] State of Hawaii, Department of Health. “Department of Health to Bring Health/Digital Navigators and Telehealth Support Services to Underserved Communities.” https://health.hawaii.gov/news/newsroom/department-of-health-to-bring-health-digital-navigators-and-telehealth-support-services-to-underserved-communities/.
[27] Children’s Hospital Association. “Pediatric Workforce Challenges and Opportunities,” August 2023. www.childrenshospitals.org/-/media/files/public-policy/chgme_workforce/fact_sheets/pediatric_workforce_shortages_factsheet_state_solutions.pdf.
[28] Texas Health and Human Services. “HHSC Uniform Managed Care Manual, Nonemergency Medical Transportation (NEMT) Services Handbook,” August 1, 2021. www.hhs.texas.gov/sites/default/files/documents/laws-regulations/handbooks/mepd/archive/16-4/16-4.pdf.
[29] Texas Health and Human Services. “HHSC Uniform Managed Care Manual.”
[30] Virginia Department of Health, Office of Family Health Services, Division of Child and Family Health. “Maternal and Child Health Services Title V Block Grant, Virginia, FY 2023 Application/FY 2021 Annual Report,” August 16, 2022. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=VA&year=2023.
[31] Virginia Department of Health. “Care Connection for Children.” www.vdh.virginia.gov/care-connection-for-children/.
[32] Michigan Department of Health and Human Services. “Maternal and Child Health Services Title V Block Grant, Michigan, FY 2023 Application/FY 2021 Annual Report,” August 16, 2022. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=MI&year=2023.
[33] Epilepsy Foundation of Michigan. “Michigan Pediatric Epilepsy Project Resource Hub.” https://epilepsymichigan.org/programs/michigan-pediatric-epilepsy-project/.
[34] Michigan Department of Health and Human Services. “Michigan Pediatric Epilepsy Project.” www.michigan.gov/mdhhs/assistance-programs/cshcs/pedtelemed/about-the-project.
[35] South Carolina Department of Health and Environmental Control. “State Action Plan, Maternal and Child Health Services Title V Block Grant, South Carolina, FY 2023 Application/FY 2021 Annual Report.” Title V Information System, Maternal and Child Health Bureau, Health Resources & Services Administration, 2022. https://mchb.tvisdata.hrsa.gov/Narratives/PlanForTheApplicationYear5/988b5caf-b0cc-41d3-9934-5e5591652ce3.
[36] South Carolina Telehealth Alliance. “About.” https://sctelehealth.org/about.
[37] South Carolina Department of Health and Environmental Control. “State Action Plan, Maternal and Child Health Services Title V Block Grant.”
[38] Ohio Department of Mental Health & Addiction Services. “Ohio Expands Peer Support Certifications to Help People in Recovery from Mental Illness and Substance Use Disorders,” May 10, 2022. https://mha.ohio.gov/about-us/media-center/news/pr-5-10-2022.
[39] Ohio Department of Mental Health & Addiction Services. “Become a Youth Peer Supporter.” https://mha.ohio.gov/community-partners/peer-supporters/become-a-youth-peer-supporter.
[40] Ohio Department of Mental Health & Addiction Services. “Become a Family Peer Supporter.” https://mha.ohio.gov/community-partners/peer-supporters/become-a-family-peer-supporter.
[41] Schober, Melissa, and Kathryn Baxter. “Medicaid Funding for Family and Youth Peer Support Programs in the United States.” National Technical Assistance Network for Children’s Behavioral Health, Substance Abuse and Mental Health Services Administration, July 2020. https://nasmhpd.org/sites/default/files/State%20Medicaid%20for%20Parent%20Peers%20Support%20July%202020.pdf.
[42] Washington State Medical Home Partnerships Project. “Project ECHO.” https://medicalhome.org/stateinitiatives/project-echo/.
[43] Smith, Lauren A., and Hilary Heishman. “Achieving Health Equity Through Equitable Data Systems.” CDC Foundation, October 4, 2022. www.cdcfoundation.org/blog/achieving-health-equity-through-equitable-data-systems.
[44] State of Hawaii, Department of Health. “Maternal and Child Health Services Title V Block Grant, Hawaii, FY 2023 Application/FY 2021 Annual Report,” August 16, 2022, 27, 67, 174-175, 179. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=HI&year=2023
[45] Ohio Department of Health, Bureau of Maternal, Child, and Family Health. “Maternal and Child Health Services Title V Block Grant, Ohio, FY 2023 Application/FY 2021 Annual Report,” August 25, 2022, 56-57. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=OH&year=2023.
[46] Arizona Department of Health Services. “Maternal and Child Health Services Title V Block Grant, Arizona, FY 2023 Application/FY 2021 Annual Report,” August 15, 2022, 125-126, 133. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=AZ&year=2023.
[47] Pennsylvania Department of Health. “Maternal and Child Health Services Title V Block Grant, Pennsylvania, FY 2023 Application/FY 2021 Annual Report,” August 25, 2022, 245. https://mchb.tvisdata.hrsa.gov/Admin/FileUpload/DownloadStateUploadedPdf?filetype=PrintVersion&state=PA&year=2023.
[48] California Department of Health Care Services. “Department of Health Care Services Comprehensive Quality Strategy,” February 4, 2022, 41, 111. www.dhcs.ca.gov/services/Documents/Formatted-Combined-CQS-2-4-22.pdf.
[49] American Academy of Pediatrics. “Medical Home Utah Initiatives.” www.aap.org/en/practice-management/medical-home/medical-home-national-and-state-initiatives/medical-home-state-initiatives/medical-home-utah-initiatives/.
Acknowledgements
This work was authored by NASHP Policy Associate Zack Gould, NASHP Senior Policy Associate Robin Buskey, and NASHP Director Heather Smith. Many thanks to NASHP Senior Director Karen VanLandeghem for leading and contributing to this resource. NASHP also extends its sincere thanks and appreciation to the individuals at the state and national levels who supported this work and shared and/or reviewed the state examples included.
Support for this work was provided by the Lucile Packard Foundation for Children’s Health. The views presented here are those of the authors and do not reflect those of the Foundation or its staff. The Foundation’s Program for Children with Special Health Care Needs invests in creating a more efficient and equitable system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. Learn more at https://lpfch.org/CYSHCN.
