A Health Care System that Supports Children with Special Health Care Needs and Their Families

A parent shares an example of a “care map,” which illustrates the complicated web of medical care and coverage, as well as educational and support services needed for children with special health care needs and their families. A parent shares an example of a “care map,” which illustrates the complicated web of medical care and coverage, as well as educational and support services needed for children with special health care needs and their families.

In California, 14% of children have a special health care need. Kidsdata released updated data on children with special health care needs that describe their characteristics, access to services, level of insurance coverage, and quality of their care. The data also describe the impact of having a special health care need on children and families.

Guest author, Allison Gray, MA, from the Lucile Packard Foundation for Children’s Health, shares how a more family-centered and coordinated system of health care can ease the family experience.

Core to the Maternal and Child Health Bureau’s definition of children with special health care needs (CSHCN) is the need for care “beyond that required by children generally.” While it is understood that this means more doctor’s appointments, therapies, services, hospitalizations, and potentially a need for additional in-home care for the child, the impact on parents, caregivers, and families often is overlooked. Parents strive to do everything they can to ensure the best care for their child. In addition to day-to-day care, they are faced with navigating a fragmented system, coordinating across multiple providers who do not communicate with one another, and figuring out confusing health insurance policies and payments among other tasks on a long to-do list. Many of the challenges families face are due to shortfalls in our complex health care system.

Some parents reduce work hours in order to manage their child’s care, and in other cases parents leave the workforce entirely. Many families experience financial hardship as a result. Broader implications may include the stalling of careers and an economic impact. The latest data show that 19% of CSHCN in California had family members cut back or stop working because of their children’s health needs in 2016-2019. Anecdotal data suggest that the current public health crisis has resulted in a significant exacerbation of the challenges around employment and caregiving for these families.

Now more than ever, a more family-centered and coordinated system of care is required to ease the burden on families of CSHCN. Best expressed in a Viewpoint on family burden and medical complexity by Meg Comeau of the Center for Innovation in Social Work & Health at the Boston University School of Social Work, a national organization that works to advance the health and well-being of vulnerable populations, “…these burdens are not caused by my child or any of my family members. They are not the direct result of my complex caregiving responsibilities. They are the result of deficits in the systems that surround us; the systems that are supposedly designed to support us.”

Visit the Lucile Packard Foundation for Children’s Health website to learn more about how their program for CSHCN is investing in a more efficient system that ensures high-quality, coordinated, family-centered care that will improve health outcomes for children and enhance quality of life for families.

Resources on Children with Special Health Care Needs

National Care Coordination Standards for Children and Youth with Special Health Care Needs
These Standards help state officials and other stakeholders develop and strengthen high-quality care coordination for children. It includes identifying and assessing needs, engaging families, and building a strong and supportive care coordination workforce.

An Almost Complete List of Services Used by Families and Children with Special Health Care Needs
Children with chronic and complex health conditions and their families require access to a wide array of health care and other services to function optimally. This list can be used for care mapping, care planning, resource database creation, and referral system development.

The Lucile Packard Foundation for Children’s Health continually updates a curated list of COVID-19 Resources for Children with Special Health Care Needs.

Children’s Health Resources

2020-21 California County Scorecard of Children’s Well-Being
Children Now released an interactive tool that delivers data on how kids are doing in each of California’s 58 counties. It tracks 39 key indicators of children’s well-being – over time, by race/ethnicity, and relative to other counties – from prenatal to the transition to adulthood.

Recently Released Data

We recently released data about Children with Special Health Care Needs and Childhood Adversity. See links to the latest here.

Posted by kidsdata.org

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