Children with Special Health Care Needs in Indiana

Indiana

The demographics of a state influence the health needs and outcomes of its population. Understanding the demographic breakdown can help state health officials determine health promotion and disease prevention priorities. Children with special health care needs have, or are at high risk for, chronic physical, developmental or behavioral conditions and require more health services than most children. These children are a diverse group with varying degrees of health care needs. Families who have children with special health care needs may also: 

• Require complex and long-term health services.
• Spend more on health care.
• Experience disparities in accessing care. 

Approximately 14.1 million children — nearly 20% of children in the United States — had special health care needs in 2019-2020. During the 2017-2018 school year, 21.4% of children with special health care needs missed seven or more days of school due to illness or injury, compared with 6.4% of children without special health care needs. 

For effective care, children with complex medical needs should have access to a medical home. The medical home approach involves comprehensive planning, patient- and family-centered care and management of medical care between patients, families and health care providers. The purpose of a medical home is for the family and their health care team to work together to improve the health of children with special health care needs. Only 42.2% of children with special health care needs received care in a medical home in 2019-2020. During that same period, only 62.5% of children with special health care needs had adequate and continuous health insurance, including coverage for providers and services at a reasonable cost. 

A 2020 review of the evidence found positive long-term results from a pilot program that identified medically complex families struggling with economic hardship and provided “housing prescriptions,” or supportive housing interventions. Alleviating the stress and financial burden of housing instability led to measurable improvements in childrens’ physical health and in their parents’ mental health.

The lasting effects of the COVID-19 pandemic have caused a number of Medicaid-covered home- and community-based service providers to close permanently — an issue of particular concern here because Medicaid is the primary payer for services like medical homes. Additionally, medical homes may not be covered adequately or remain unaffordable for privately-insured children with special health care needs.

Bovell-Ammon, Allison, Cristina Mansilla, Ana Poblacion, Lindsey Rateau, Timothy Heeren, John T. Cook, Tina Zhang, Stephanie Ettinger De Cuba, and Megan T. Sandel. “Housing Intervention For Medically Complex Families Associated With Improved Family Health: Pilot Randomized Trial: Findings an Intervention Which Seeks to Improve Child Health and Parental Mental Health for Medically Complex Families That Experienced Homelessness and Housing Instability.” Health Affairs 39, no. 4 (April 1, 2020): 613–21. https://doi.org/10.1377/hlthaff.2019.01569.

HRSA Maternal and Child Health Bureau. “Children with Special Health Care Needs: NSCH Data Brief, July 2020.” NSCH Data Brief. The Health Resources and Services Administration, July 2020. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-cshcn-data-brief.pdf.

HRSA Maternal Child Health Bureau. “Children and Youth with Special Health Care Needs.” NSCH Data Brief. The Health Resources and Services Administration, June 2022. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-data-brief-children-youth-special-health-care-needs.pdf.

O’Malley Watts, Molly, Alice Burns, and Meghana Ammula. “Ongoing Impacts of the Pandemic on Medicaid Home & Community-Based Services (HCBS) Programs: Findings from a 50-State Survey.” Issue Brief. KFF, November 28, 2022. https://www.kff.org/medicaid/issue-brief/ongoing-impacts-of-the-pandemic-on-medicaid-home-community-based-services-hcbs-programs-findings-from-a-50-state-survey/.

Williams, Elizabeth, and MaryBeth Musumeci. “Children with Special Health Care Needs: Coverage, Affordability, and HCBS Access.” Issue Brief. KFF, October 4, 2021. https://www.kff.org/medicaid/issue-brief/children-with-special-health-care-needs-coverage-affordability-and-hcbs-access/.