Children With Special Health Care Needs in Kansas

Kansas

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. For this measure, children were defined as having special health care needs if they had at least one difficulty and one condition from the lists below, and met the criteria laid out in the Child and Adolescent Health Measurement Initiative’s five-item screening tool. The screening tool characterizes special health care needs based on the health challenges a child experiences due to an ongoing health condition, regardless of diagnosis. 

The difficulties include: 

• Difficulty breathing, swallowing, and digesting food; 
• Difficulty with coordination, walking, using one’s hands, climbing stairs, dressing and bathing, and doing errands alone; 
• Deafness or difficulty hearing; 
• Blindness or difficulty seeing; 
• Physical pain; 
• Serious difficulty concentrating, remembering or making decisions because of a physical, mental or emotional condition.

The conditions include: autoimmune diseases, allergies, arthritis, asthma, blood disorders, cerebral palsy, cystic fibrosis, diabetes, Down syndrome, epilepsy, genetic or inherited conditions, heart conditions, frequent or severe headaches, Tourette syndrome, anxiety, depression, behavior problems, developmental delays, intellectual disabilities, speech disorders, learning disabilities, autism spectrum disorders, attention-deficit/hyperactivity disorder and fetal alcohol spectrum disorder.

The five criteria are: 

1. Needing or using prescription medications; 
2. Needing or using medical, mental health or educational services more than average; 
3. Having functional limitations compared with children of the same age; 
4. Using or needing specialized therapies, such as speech therapy or occupational therapy; and 
5. Receiving treatment or counseling for emotional, behavioral or developmental problems. 

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 are likely to: 

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

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 among patients, families and health care providers. The purpose of a medical home is for families and health care teams 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 children’s physical health and their parents’ mental health.

Healthy People 2030 has an objective to increase the proportion of children and adolescents with special health care needs who have a system of care.

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.

Children and Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective. Genetic Alliance Monographs and Guides. Washington, D.C.: Genetic Alliance and Family Voices, 2013. http://www.ncbi.nlm.nih.gov/books/NBK132165/.

Maternal and Child Health Bureau. Children and Youth with Special Health Care Needs, 2019-2020. NSCH Data Brief. Rockville, MD: 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.

Maternal and Child Health Bureau. Children with Special Health Care Needs, 2017-2018. NSCH Data Brief. Rockville, MD: Health Resources and Services Administration, July 2020. https://mchb.hrsa.gov/sites/default/files/mchb/programs-impact/nsch-cshcn-data-brief.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/.