Spotlight on Children With Special Needs (Part 4): Quality of Care

This fourth installment in our series on children with special health care needs (CSHCN) explores the quality of care that CSHCN receive. Check out the third in this series, which examines strengths and challenges related to CSHCN’s access to services, the second on characteristics of CSHCN, and the first on family-centered care for families with CSHCN.

Note: A child who receives care in a “well-functioning” health system must have adequate, continuous insurance coverage; receive medical and dental preventive care; have no unmet needs or barriers to accessing services; receive care within a medical home; and get support for the transition from adolescent to adult health care. Additionally, the child’s family must feel like a partner in shared decision-making with health providers.

A well-functioning health system supports the well-being and development of children with special health care needs (CSHCN). Yet, in California in 2022, fewer than 1 in 13 CSHCN received care in a system meeting minimum federal quality-of-care standards. Among children without special health care needs, the share receiving care in a well-functioning system was twice as high, but still lower than 1 in 6.

CSHCN have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and require health and related services of a type or amount beyond that generally required by children. CSHCN often need more specialized and comprehensive medical care than their peers, and they are more likely to experience social-emotional issues, academic struggles, and other adversities that can complicate their care. Their families, too, may deal with greater caregiving burdens and stress—and face barriers to high-quality care due to racial, ethnic, and socioeconomic factors.

Each component of a well-functioning health system contributes to ensuring that children receive the high-quality care they need. Let’s explore some components and examine how well CSHCN in California are being served.

Care Within a Medical Home

A medical home is a model of primary care in which children receive comprehensive and continuous care to achieve optimal health outcomes. In 2022, 31% of CSHCN in California received care within a medical home, compared with 38% nationally.

Access to a medical home varies by family resources. Just 16% of California CSHCN living below the federal poverty threshold ($27,479 for a family of two adults and two children in 2022) had a medical home according to the latest estimates, whereas 40% of CSHCN in families with incomes at or above 400% of the poverty threshold did. Additionally, California CSHCN covered by public health insurance only were less likely to receive care within a medical home than those with only private insurance (25% vs. 39%, respectively).

Racial/ethnic disparities also exist: In 2022, 24% of Hispanic/Latino CSHCN statewide received care within a medical home, compared with 39% of white CSHCN.

Care Coordination

Coordination of health care across providers and services can maximize children’s health outcomes and reduce stress on families. For children with complex needs especially, care coordination helps them and their families effectively navigate the health care system and receive the right care at the right time. However, 2022 data show that among California CSHCN needing care coordination in the previous year, only half received this aspect of care within a medical home. By comparison, around two-thirds of children without special health care needs received the care coordination they needed.

Health Insurance

There remains room for improvement to ensure all children have continuous and adequate health insurance coverage. Insurance is considered adequate when it meets a child’s needs, allows access to needed providers, and has reasonable out-of-pocket costs. Although a vast majority of CSHCN in California (96%) were consistently insured in 2022—meaning that they were covered during all 12 months of the prior year—only 59% of CSHCN had adequate health insurance at the time of survey, compared with 71% of children without special health care needs.

Gaps in access to adequate insurance, care coordination, medical homes, and well-functioning health systems highlight ongoing challenges faced by CSHCN and their families. Read more about policy implications of these findings and explore solutions to improve care for CSHCN.

This spotlight was authored by KidsData intern Athira Rajiv. Funding for KidsData’s latest information on CSHCN was provided by the Lucile Packard Foundation for Children’s Health.

Opportunities

BlackECE Symposium on Policy, Practice, and Research

On August 9 and 10 in Sacramento, Black Californians United for Early Care and Education will bring together researchers, educators, policymakers, advocates, providers, and families in research-based learning to advance culturally affirming policies and practices across California’s early learning and care system.

The Live Beyond Campaign: Raising Awareness to Help Californians Heal From ACEs

On Tuesday, August 13, from 12:00 p.m. to 1:15 p.m. PDT, the ACEs Aware Learning Center will host California Surgeon General Diana Ramos, former California Surgeon General Nadine Burke Harris, adverse childhood experiences (ACEs) experts, and youth advisers in a discussion of Live Beyond, a new campaign to raise awareness and offer resources to youth and young adults affected by ACEs and toxic stress.

Children’s Health Resources

Perceived Social and Emotional Support Among Teenagers [PDF]

A new report by the Centers for Disease Control and Prevention’s National Center for Health Statistics finds that parents may overestimate how much social and emotional support their teenage children are getting. In a nationally representative sample of teens ages 12-17 and their parents, parents consistently reported higher levels of support for their teens than what teens reported themselves. According to parent reports, 77% of teens always received the support they needed—almost three times higher than the 28% reported by teens.

Building Strong Foundations: Children’s Mental Health

The National Institute for Health Care Management Foundation has released an infographic highlighting data on mental health issues and suicides among children and teens, underdiagnosis and undertreatment of disorders, and strategies to promote youth mental health and improve support.

Early Childhood Adversity May Affect Neurological and Cognitive Development

A new study from the Eunice Kennedy Shriver National Institute of Child Health and Human Development suggests exposure to ACEs between ages 0 and 7 is associated with deficits in neurocognitive development. Researchers found children exposed to early childhood adversity scored lower on tests of visual-motor and sensory-motor skills, listening-vocal skills, intelligence, and academic achievement when compared with children with low exposure to adversity.

Recently Released Data

We recently released data about family structure and quality of care for children with special health care needs. See links to the latest here.

Posted by kidsdata.org

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