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.

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Licensed Child Care Remains Challenging for Many Families

Licensed Family Child Care Homes Offering Evening, Weekend or Overnight Care in California, 2019

Image of licensed family child care homes offering evening, weekend, or overnight care in california

Licensed child care continues to be unavailable and unaffordable for many families in California. While nearly 37,000 child care centers and family child care homes were licensed in California offering nearly one million spaces in 2019, caring for children outside the home remained a challenge. For caregivers who work non-traditional hours, the challenge may be even greater.

Among licensed facilities in 2019,

  • 2% of child care centers and 41% of family home care offered evening, weekend, and/or overnight care
  • 82% of each type of facility offered part-time schedules
  • Child care centers cost over $17,000 yearly for full-time infant care and over $12,000 for preschooler care while family home care facilities cost around $11,000 for either age group (in 2018)

Since the pandemic began, child care has been impacted in ways we are only beginning to understand. Based on a study conducted by the California Child Care Resource and Referral Network, 43% of respondents reported in June and July 2020 that their child care was different than what they had been planning to use before the pandemic. Cultivating and expanding a mixed delivery care system that serves all families has only increased in importance through this period.

Webinar

Creating Compelling Messaging with ACEs Data
Date: January 20, 2021, 10:30 AM – 12:00 PM
Host: Essentials for Childhood (EfC) Initiative

Speakers from Berkeley Media Studies Group, ACEs Connection, and kidsdata.org will offer guidance on effectively communicating about adverse childhood experiences. Register here.

Children’s Health Resources

The CDC recently released a report that raises concern for child abuse victims. The report found that during the pandemic the total number of emergency department visits related to child abuse and neglect in the U.S. decreased, but the percentage of such visits resulting in hospitalization increased, compared with 2019.

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

Recently Released Data

We recently released data about Early Care and Education. See links to the latest here.

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California Sets Bold Goal to Cut Burden of ACEs in Half Within Next Generation

A new report from the California Office of Surgeon General provides vision and guidance on reducing the impact of adverse childhood experiences (ACEs). Roadmap for Resilience: The California Surgeon General’s Report on Adverse Childhood Experiences, Toxic Stress, and Health covers four areas:

  • The science, scope, and impacts of ACEs and toxic stress
  • Primary, secondary, and tertiary strategies to prevent harmful exposures, facilitate early detection and intervention, and lessen the severity and progression of resulting diseases or social outcomes
  • State tools and strategies to address ACEs and toxic stress including case studies and systems-level implementation considerations
  • California’s next steps to advance evidence-based interventions and cross-sector approaches to prevent and mitigate the impacts of ACEs

The report focuses on cross-sector strategies in health care, public health, social services, early childhood, education, and justice. In addition to providing a framework for a shared understanding, language, and vision to align efforts, it also highlights current practices that address ACEs as a public health crisis.

See kidsdata.org’s Childhood Adversity and Resilience topic for data describing the number and types of adverse experiences among children in California.

 

Webinar

Creating Compelling Messaging with ACEs Data
Date: January 20, 2021, 10:30 AM – 12:00 PM
Host: Essentials for Childhood (EfC) Initiative

Speakers from Berkeley Media Studies Group, ACEs Connection, and kidsdata.org will address the practical application of the report: “Adverse Childhood Experiences Data Report: Behavioral Risk Factor Surveillance System (BRFSS), 2011-2017: An Overview of Adverse Childhood Experiences in California.” Register here.

 

Recently Released Data

We recently released data about homelessness. Almost 12,000 California youth ages 0 to 24 were homeless on one night in January 2019. See links to the latest here.

Posted by kidsdata.org

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Quick Tip: Definition, Source & Notes

Compelling data go beyond the numbers. All 600+ indicators on kidsdata.org include definitions, data sources, and notes to help interpret the data.

Click on the “Definition, Source & Notes” link on any indicator page:

In this section, find a sample sentence that shows how to talk about the data, a link to the data source, and additional information to understand findings.

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Suicidal Ideation and School Connectedness

Suicidal Ideation by High, Medium, and Low Levels of School Connectedness Among California Students, 2017-2019


Youth who feel more connected to school are more likely to have a stronger sense of well-being. Data on suicidal ideation among students before the COVID-19 pandemic suggest a relationship to school connectedness. Among California students in grades 9, 11, and non-traditional programs in 2017-2019, nearly one in ten who felt highly connected to school seriously considered attempting suicide. However, almost three in ten students who felt a low level of school connection considered attempting suicide.

Though research on suicidal ideation since the pandemic began is limited, past research linked social isolation with poor mental health among children and youth. During a time when physical interaction with educators and peers is reduced, child-serving programs become increasingly important as a means to drive social interaction and mental health well-being.

Two bills in the California legislature that, in part, address mental health among children and youth were signed into law in September. Suicide Prevention (AB 2112) establishes the Office of Suicide Prevention within the California Department of Public Health. The office will provide information and technical assistance to statewide and regional partners regarding best practices on suicide prevention policies and programs. The Peer Support Specialist Certification Program Act (SB 803) establishes statewide requirements for counties to use in developing certification programs for peer support specialists. Peer support specialists must self-identify as having lived experience with the process of recovery from a mental illness or substance use disorder. They can play a valuable role in promoting connections and reducing suicide and suicidal ideation.

Children’s Health Resources

Promoting Youth Engagement & Connectedness in a COVID-19 World, an online event facilitated by the Prevention Technology Transfer Center Network, shares participant suggestions for successful strategies to virtually engage youth. Find summary notes among the supplementary materials.

Suicide Prevention in Schools: Strategies for COVID-19 offers a perspective on addressing students’ mental health needs in schools from The Suicide Prevention Resource Center.

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

Posted by kidsdata.org

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New Report on Adverse Childhood Experiences

Prevalence of Adverse Childhood Experiences Among Adults in California, 2011-2017

Image of a pie chart of the prevalence of adverse childhood experiences among adults in california, 2011-2017
In California, 16% of adults reported between 2011 and 2017 that they had experienced four or more adverse experiences before age 18. These findings are based on data from the Behavioral Risk Factor Surveillance System (BRFSS), made available in partnership with the Essentials for Childhood Initiative (EfC) and the UC Davis Violence Prevention Research Program.

The EfC explores survey findings from BRFSS in their new report, Adverse Childhood Experiences Data Report: Behavioral Risk Factor Surveillance System, 2011 to 2017. The report provides a broad overview of the prevalence and burden of adverse childhood experiences (ACEs). One important set of findings compares Californians who had ACEs with those who did not. Compared to those with no ACEs, and after adjusting for race, sex, age, income, education, and employment status, those who had four or more ACEs before age 18 were:

  • 3.5 times more likely to report frequent mental distress
  • 2 times more likely to report fair or poor health
  • 3 times more likely to report 14 or more unhealthy days in the past month

The EfC shares interventions that can reduce ACEs. Programs and policies like the California Earned Income Tax Credit and Paid Family Leave create changes in social norms and focus on strengthening economic support for families, both of which promote life-long health and well-being.

Kidsdata.org offers a comprehensive framework for understanding and addressing child adversity across the lifespan. You can access the latest findings on adverse childhood experiences from three independent data sources: BRFSS, the National Survey of Children’s Health, and the Maternal and Infant Health Assessment. Learn more about these data sources in “Measures of Childhood Adversity and Resilience on Kidsdata.org” under the data figures.

Children’s Health Resources

A study using data from BRFSS, Adult Health Burden and Costs in California During 2013 Associated with Prior Adverse Childhood Experiences, found that having at least one ACE was associated with $10.5 billion in excess personal health care spending.

A new resource, Coping with Stress During the COVID-19 Pandemic, is for families experiencing severe economic consequences resulting from COVID-19 and offers information on ways Californians can take care of themselves and their families during the pandemic. A downloadable PDF is available in English and Spanish.

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

Recently Released Data

We recently released data about Childhood Adversity and Resilience and Youth Suicide and Self-Inflicted Injury. See links to the latest here.

Posted by kidsdata.org

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New: Demographic Summaries on Youth Sexual Orientation

Youth Sexual Orientation of Public School Students by Grade Level, 2015-2017

Image of table

You can now access demographic summaries by sexual orientation on kidsdata.org. In this section, find data summaries for gay, lesbian, and bisexual youth; straight youth; and youth not sure of sexual orientation. These data are located in the “Data by Demographic” tab on the website which has additional summaries on other demographic groups of children and youth such as race/ethnicity, income level, and immigrant status.

Gay, lesbian, and bisexual youth have an increased risk for victimization, substance abuse, and child maltreatment. Four to 10% of California public school students in grades 7, 9, 11, and in non-traditional programs were gay, lesbian, or bisexual. They reported very different experiences and behaviors in 2015-2017 as compared to students who were straight:

  • 60% of gay, lesbian, and bisexual students reported being bullied and harassed at least once in the previous year, and 45% were harassed because of their sexual orientation
  • 63% of gay, lesbian, and bisexual students reported having depression-related feelings in the previous year compared with 26% of straight students
  • 24% of gay, lesbian, and bisexual students reported being highly motivated in school compared with 37% of straight students

We hope you will use the demographic summaries on sexual orientation to share key findings with your community and tailor comprehensive supports. Expect newly updated data in this set of summaries in the coming months.

 

Children’s Health Resources

In Implications of COVID-19 for LGBTQ Youth Mental Health and Suicide Prevention The Trevor Project outlines how LGBTQ youth may be impacted by the pandemic and offers suggestions on how to support LGBTQ youth during this time.

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

Posted by kidsdata.org

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Latinx Children in California

With an increasingly diverse child population across California, acknowledging and addressing health inequities is more critical than ever. In an effort to inform and educate the public on the many factors that contribute to disparate health outcomes, The Children’s Partnership developed a series of fact sheets as part of its “A Child is a Child” campaign. In honor of Latinx Heritage month, we welcome Mayra E. Alvarez, president of The Children’s Partnership, to share important findings from their fact sheet, Latinx Children’s Health Snapshot, released in partnership with the Latino Coalition for a Healthy California.

Latinx Child Health Inequities
California is home to 4.7 million Latinx children and youth. They form a large and diverse population of California who navigate multiple intersecting identities, cultures, and languages. Latinx children and youth face disproportionate structural barriers as they navigate through life, whether it’s accessing health coverage and services, having enough healthy food to eat, or living in communities with the highest rates of environmental pollution.

A collective equity agenda transforms current programs and policies in order to ensure all children, no matter their background, have the resources and opportunities they need to reach their full potential and lead healthy lives.

As a result of the pandemic, these inequities in our child-serving systems have only been made worse, especially for children of color, such as Latinx children:

COVID-19 and Latinx Child Health
The pandemic is wreaking havoc on millions of Latinx, Black and immigrant families in California, while simultaneously shouldering the front-line work that has kept our state’s economy running. Nearly 75% of children and youth diagnosed with COVID-19 are Latinx, even though they make up just over half of the state’s population.

Latinx Child Health Coverage
California has made critical strides to improve children’s access to health coverage, expanding Medi-Cal to cover all low-income children, regardless of immigration status in 2016. Today, 1 in 2 Latinx children are enrolled in Medi-Cal. Despite California efforts to expand coverage, Latinx children are almost 1.5 times more likely to be uninsured compared to other kids. Nearly 190,000 Latinx children remain without health coverage.

Latinx Youth Mental Health
As a result of community trauma and exacerbated by the pandemic, mental health concerns have been growing for Latinx young people. Between 2007 and 2014, Latinx youth mental health hospitalizations rose 86% compared to a 21% increase among white youth. Latina youth are more likely to consider suicide than their male counterparts and white female youth. Over 1 in 3 (34.3%) Latina youth has considered suicide and nearly 1 in 7 Latina youth (13.3%) have attempted suicide. For lesbian, bisexual and queer Latina youth, the reality is even worse: nearly half (48%) has considered suicide; and 1 in 3 (33%) lesbian, bisexual, and queer Latina youth attempted suicide.

Community Environments and Food Access
Systemic racism is at the root of health, income, and other inequities, which have widened as a result of the current crises. For Latinx families, access to healthy foods and safe environments has historically been a challenge and has only grown more difficult as a result of COVID-19. Latinx households with children are twice as likely to be experiencing food insecurity during the pandemic than white households with children. Latinx children make up 4 in 5 of children living in California census tracts impacted by the highest environmental pollution burdens and over half of students enrolled at schools impacted by
unsafe drinking water are Latinx.

Prioritizing Latinx Child Well-being
Latinx children comprise a growing part of California’s children. Recognizing their critical importance to California’s future, these data suggest that caring for our kids must prioritize the specific needs of Latinx children. These data also drive home the need to address systemic racism in order to address the multiple challenges impeding the well-being of the state’s Latinx children. With this global emergency, an impending recession and a national reckoning on racial justice comes an even greater moral imperative to develop a more equitable infrastructure that increases safety net supports, health access, and mental health services so that California’s Latinx children and families can achieve their right to thrive.

Learn more about child health inequities for Latinx and other children at The Children’s Partnership.

 

Additional Resources

The Children’s Partnership is a California nonprofit advocacy organization working at the intersection of research, policy and community engagement to ensure all children have the resources and opportunities they need to grow up healthy and lead productive lives. In addition to highlighting Latinx children’s health and well-being, The Children’s Partnership also has released fact sheets about these groups:

  • Lesbian, Gay, Bisexual, Transgender, Queer+ youth
  • Asian American, Native Hawaiian, and Pacific Islander children
  • Black children

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Over Half of California Students are High-Need

High-Need Students in California, 2019

In California, 63% of students were considered high-need in 2019, meaning they were eligible for free or reduced price school meals, were English Learners, or were foster youth. School districts varied widely in the percentage of students with high-need, from less than 3% to more than 99% among districts with data. Looking further into understanding high-needs students, more than 59% of California school children – over 3.5 million students – were eligible for free or reduced price school meals (FRPM) in 2020, up from 51% in 2007. Not only are students eligible for FRPM based on family income, but also if they participate in the CalFresh or CalWORKS programs, are eligible for the Migrant Education Program, are homeless, or are foster youth.

The indicator describing high-need students is a part of a new topic on kidsdata.org, Student Demographics. The new topic was created to celebrate student diversity in California and increase our understanding of diversity in terms of race/ethnicity, family economics, and more. Student demographic trends are useful for assessing needs and planning school and community services, and ultimately, they play an important role in informing policies and practices that address intransigent inequities. The topic, Student Demographics, combines relevant indicators previously under other topics as well as two new indicators: high-need students and students eligible for the migrant education program.

Student Demographics Resource

Getting Down to Facts II describes the challenges and the promising efforts to achieving California’s vision of providing an equitable public education.

Recently Released Data

We recently released data about Student Demographics and Characteristics of Children with Special Needs. See links to the latest here.

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