Pediatric Annals

Special Issue Article 

Behavioral Health Disparities Among Children and Youth with Special Health Care Needs

Anne Elizabeth Glassgow, PhD; Benjamin Van Voorhees, MD, MPH

Abstract

The burden of mental health morbidity, disability, and mortality in children is not equally distributed across populations in the United States. The consequence is widespread differences in health status between certain groups of children that result in systematic behavioral health disparities. In the US, an estimated 12.8% of children (9.4 million) have a special health care need. Mental, emotional, and behavioral problems and disorders are widespread among children and youth with special health care needs (CYSHCN), but are often undetected and untreated despite the adverse consequences to children throughout the life course. CYSHCN experience behavioral health disparities in the prevalence of behavioral health problems and conditions, and in the access to needed services. Further investigation is required to fully identify behavioral health needs, the mechanisms contributing to the disparities, and effective strategies to prevent and provide interventions for CYSHCN. Investing in research and interventions is vital to reducing behavioral health disparities. [Pediatr Ann. 2017;46(10):e382–e386.]

Abstract

The burden of mental health morbidity, disability, and mortality in children is not equally distributed across populations in the United States. The consequence is widespread differences in health status between certain groups of children that result in systematic behavioral health disparities. In the US, an estimated 12.8% of children (9.4 million) have a special health care need. Mental, emotional, and behavioral problems and disorders are widespread among children and youth with special health care needs (CYSHCN), but are often undetected and untreated despite the adverse consequences to children throughout the life course. CYSHCN experience behavioral health disparities in the prevalence of behavioral health problems and conditions, and in the access to needed services. Further investigation is required to fully identify behavioral health needs, the mechanisms contributing to the disparities, and effective strategies to prevent and provide interventions for CYSHCN. Investing in research and interventions is vital to reducing behavioral health disparities. [Pediatr Ann. 2017;46(10):e382–e386.]

Mental, emotional, and behavioral (MEB) disorders in children have considerable costs and a profound impact on children, families, communities, and society.1 Among children in the United States, the burden of mental health morbidity, disability, and mortality is inequitably distributed across populations. The effect is substantial differences in health status between particular groups of children that result in systematic health and behavioral health disparities. This article reviews behavioral health disparities among children and youth with special health care needs (CYSHCN).

Behavioral Health Disparities and Social Determinants of Health

Behavioral health disparities are differences in the overall rates of mental illness and substance abuse incidence or prevalence, morbidity, mortality, or survival between populations that are closely linked with social or economic disadvantage.2 Disparities also include differential access, quality, and outcomes of behavioral health care.3 The burdens of disease and premature death are often not equally distributed among groups that include racial and ethnic minorities; lesbian, gay, bisexual, transgender, and questioning (LGBTQ) populations; people with disabilities; transition-age youth; and young adults.3

In general, health disparities are the result of a complex interplay of many contributing factors associated with the social determinants of health, which are the conditions in which people are conceived and born, live, grow, develop, and age.2 These conditions include socioeconomic factors such as economic stability, education, community, health and the health care system, and the built environment.2

Living in poverty is particularly detrimental for children and has been associated with numerous vulnerabilities and adverse psychosocial, developmental, and health outcomes throughout the life course.4 Poverty affects the ability of parents to meet children's basic needs; moreover, families face other deleterious effects of living in poverty such as violence, toxic stress, racism, poor mental health, food insecurity, housing insecurity, and others.4 Poverty disproportionately affects children compared to adults. According to 2015 census data, 19.7% of children in the US younger than age 18 years (15.5 million) lived in poverty (ie, income below 100% of the federal poverty level of $24,257 for a family of 4).5 Poverty rates also are disparate by race, with blacks persistently having the highest poverty rate (24.1%) compared to all other racial groups, including Hispanics (21.4%), Asians (11.4%), and non-Hispanic whites (9.1%).5 For CYSHCN, poverty increases vulnerability and magnifies risk of adverse health and social outcomes.4

Children and Youth with Special Health Care Needs

In the US, an estimated 12.8% of children (9.4 million) have a special health care need.6 CYSHCN are defined by the Maternal and Child Health Bureau as children who have been diagnosed or are at elevated risk for a chronic physical, developmental, behavioral, or emotional condition and who need health and other associated services beyond that generally required by children.7 CYSHCN have a multitude of vulnerabilities that are often driven by their special health care needs, along with the health and social challenges that create problematic disadvantages. Foremost, CYSHCN have chronic complex conditions that require a range of specialized medical care, treatment, and therapies from a variety of providers. Providing the necessary high level of care and required management of care is challenging, and often health care delivery systems are fragmented and uncoordinated.8 Families of CYSHCN have exceptionally high care needs; they spend substantial time coordinating care and making frequent visits to multiple providers.8 Families report having multiple unmet needs and struggle to navigate the complex medical care system.8

Notably, disparities in access to care, referrals for specialty care, satisfaction with care, and unmet health and mental health needs are disproportionate among CYSHCN who are low income, black, Hispanic, live in rural areas, and lack full health insurance.6 Children who are living in poverty are over-represented among CYSHCN.6,9 In addition, families of CYSHCN face a tremendous financial burden, with high out-of-pocket health care expenditures, financial problems, and high unemployment, underemployment, and absenteeism from work related to caregiving.6,8,10 For families living in poverty, the financial impact of caring for CYSHCN is markedly burdensome.6

Behavioral Health Disparities

Assessment of Behavioral Health Disorders

A primary limitation of the current literature is the assessment of mental health in CYSHCN. Typically, children's mental health is assessed by achievement of developmental and emotional milestones, including healthy social skills development and effective coping skills that allow for functioning at home, in school, and in the community.1 Recently, the term “mental, emotional, or behavioral disorders” has been used to describe children's mental disorders that meet diagnostic criteria in either the Diagnostic and Statistical Manual of Mental Disorders, fifth edition11 or the International Statistical Classification of Diseases and Related Health Problems, tenth revision.12 However, the majority of research examining MEB health in CYSHCN does not use objective assessments based on diagnostic criteria. Instead, the majority of behavioral health disparities research is secondary data analyses of the National Survey of Children with Special Health Care Needs (NS-CSHCN), a telephone survey of a nationally representative sample of between 38,000 and 40,000 CYSHCN.13 The National Center for Health Statistics, Maternal and Child Health Bureau, and Centers for Disease Control and Prevention have conducted the survey three times between 2001 and 2010.13 These survey data use caregiver report rather than objective assessments to assess the child's mental health symptoms and other indicators of mental health problems (eg, feels anxious or depressed, has behavioral problems), 9,10,14 which may have limitations such as misclassification bias (possibly as a result of a proxy report of the child's symptoms rather than a formal evaluation based on diagnostic criteria) or selection bias (ie, the data are dependent on those who respond to a telephone survey).

Surveillance (ie, the systematic and ongoing collection of data)1 of behavioral health disparities among CYSHCN is considerably limited. Likewise, a dearth of research exists regarding the prevalence of mental disorders, their impact, and issues related to access to services. Despite the aforementioned limitations, evidence does emerge from the literature regarding the disparity of mental health prevalence and needs of CYSHCN.15–18

Disparities in Prevalence

Behavioral health disparities are characterized by higher prevalence of MEB disorders among certain groups. The prevalence of MEB disorders varies both among CYSHCN compared with children without special health care needs (SHCN) and between subpopulations of CYSHCN with socio-demographic vulnerabilities. Overall, an estimated 30% of CYSHCN (2.6 million) have an MEB disorder or condition that requires treatment.16,19 For example, the results of a study that analyzed data from the 2005 to 2006 National Survey (NS) of CYSHCN in Rhode Island found 40.9% of CYSHCN had emotional, behavioral, or developmental problems.10 In addition, the prevalence of MEB symptoms and disorders is higher among CYSHCN compared with children and youth without SHCN20 For instance, Ghandour et al.20 examined data from the 2003 and 2007 NS of Children's Health and found parents of CYSHCN reported a greater proportion of children had been sad, unhappy, or depressed usually or always during the past month compared with children without SHCN. At both time points, the proportion of CYSHCN who had been sad, unhappy, or depressed usually or always during the past month was about 350% greater than children without SHCN.

Disparities in prevalence of mental health conditions and problems among CYSHCN also vary by socio-demographic criteria such as gender, race, ethnicity, and socioeconomic status. Kim et al.10 found a disproportionally high prevalence of MEB problems among certain groups of CYSHCN including teens, males, Hispanics, children whose mothers have low education, children living in low-income families, and children who have public insurance. Similarly, a study examining data from the 2009 to 2010 NS-CSHCN to determine the prevalence of chronic conditions and functional difficulties of American Indian/Alaska Native (AIAN) CYSHCN found that AIAN children had a significantly higher prevalence of conduct disorders, behavior problems, developmental delay, anxiety/depression, and difficulty with emotional behavioral factors compared to their white counterparts.14 In their examination of data from the 2005 to 2006 NS-CSHCN, Houtrow et al.9 found that children from minority racial and ethnic groups and children living in poverty were overrepresented among CYSHCN with disabilities compared to CYSHCN without disabilities. Also, the CYSHCN with disabilities had significantly higher percentages of behavioral problems (39.6% vs 25.2%), anxiety/depressed mood (46.1% vs 24%), and trouble making/keeping friends (38.1% vs 15.6%) compared with CYSHCN without disabilities.9

Disparities in Mental Health Services

CYSHCN have a greater need for mental health services compared to children without special health care needs.9,16,21 More than one-third of CYSHCN have a mental health issue that requires treatment; moreover, mental health services may assist CYSHCN and their families cope with the stress of chronic conditions.16 CYSHCN experience considerable disparities in unmet mental health needs and access to mental health services. An estimated 1.2% to 25% of CYSHCN have unmet mental health care service needs.16,17,21,22 A substantial number of CYSHCN report not having their mental health services needs met.15–17,22 Among CYSHCN, one study found that the reported prevalence of unmet mental health services needs actually increased from 3.71% in the period from 2005 to 2006 to 5.62% in the period from 2009 to 2010.15

Consistent with the literature regarding prevalence, unmet mental health needs and access to mental health services vary by socio-demographics among CYSHCN. CYSHCN who are poor, uninsured, have an MEB disorder, are without a usual source of care, and have unstable or severe conditions are statistically more likely to report unmet mental health care needs.16,17 Also, Ganz et al.16 found that when CYSHCN had a severe condition, an MEB disorder, or had unmet mental health needs themselves, other family members were also likely to have unmet needs.

Evidence regarding racial disparities in unmet mental health needs is limited and unclear.16,17,22 For example, one study examined data from the NS-CYSHCN and results indicated that black CYSHCN had significantly greater unmet mental health care needs compared to white CYSHCN (27% vs 17%), and black girls and women had the greatest unmet mental health care needs compared with all other groups (41% vs 13%–20%).17 It should be noted that after multivariate adjustment, most disparities became nonsignificant.17 Conversely, Rose et al.22 found that black parents of CYSHCN were less likely to report a need for mental health services compared with white parents of CYSHCN. The authors propose that the findings indicate the racial disparities in parental identification of need for services.22 Previous studies also have found that compared to white parents, black parents are significantly less likely to identify mental health care needs in their child with special health care needs.23 Because the parent's perception of the child's needs determines whether the mental health services are obtained, under-identification of need may lead to disparities in use and health outcomes.

Receipt of mental health and other services varies by race.18 One study examined data from the NS-CYSHCN and found that of the CYSHCN with mental disorders, the odds of receiving any medical home services were lower among Hispanic and black children compared to white children.18 Likewise, among CYSHCN with emotional, behavioral, or developmental conditions, 50.7% of blacks, 49.5% of Hispanics in English-speaking households, 48.8% of whites, and 40.2% of Hispanics in Spanish-speaking households who were in need of mental health care did not receive services.24

Discussion

MEB problems and disorders are widespread among CYSHCN, and are often undetected and untreated despite the adverse consequences to children throughout the life course.15,16,20 The majority of mental health disorders have an onset in childhood or adolescence, and it is estimated that a 2- to 4-year window of time exists between the onset of symptoms and the disorder.25 Without intervention, mental health disorders often persist and intensify.25 Given the adverse developmental trajectory of untreated mental health disorders, early identification and intervention are vital to preventing and reducing their impact across the life course.26,27 Early identification of mental health needs requires systematic behavioral screening of children.28 Also, it requires parents, family, health care systems, and other systems connected to the child to recognize and respond to the mental health needs of CYSHCN.28

However, MEB problems frequently go undetected because behavioral health screening is not routine in the US health system.28,29 Integrating behavioral health screening into primary care would increase early identification of mental health needs. Indeed, the American Academy of Pediatrics (AAP) Task Force on Mental Health29 concluded screening with a validated tool identifies children with mental health problems, and they have provided guidance on screening tools and strategies for integrating mental health care into current practice.

In addition, effective promotion and prevention services also have been shown to be cost-effective and have economic benefits across multiple systems.26 Prevention of MEB problems in CYSHCN, particularly in children who are poor and/or ethnic minorities, has potential to reduce inequities both in the short and long term.27 The benefits and demonstrated effectiveness of programs focused on promotion and prevention of developmental and mental health problems are well-documented, especially for those aimed at young children and their parents.26 Importantly, preventive mental health interventions must be culturally and linguistically tailored to ethnic minority populations and must address structural inequalities that contribute to disparities.27

Promising strategies related to health care delivery systems may also reduce behavioral health care disparities. Foremost, clinical trials, meta-analyses, and case studies have found that integrated behavioral health and medical care that is both comprehensive and multidisciplinary increases rates of detection and effective management of mental health problems and disorders.30 Essential components of this integrated systematic care include program oversight by psychiatric and primary care physicians, proactive follow-up with patients, and outcome monitoring.30 The AAP also recommends all CYSHCN have a medical home, because having a usual source of medical care expands access to care.16,17 Furthermore, not having a usual source of medical care is a risk factor for unmet mental health needs for CYSHCN.16,17 Research consistently finds evidence that the medical home model is an effective strategy to increase access to needed services for CYSHCN;16 however, children who are poor and/or racial and ethnic minorities are less likely to have medical homes compared to their white counterparts. Access to medical homes must be expanded to address the barriers to identification of mental health problems and disorders and provide the necessary mental health services for children who are poor and racial and ethnic minorities.

Empirical evidence about behavioral health disparities among CYSHCN is sparse, has significant methodological limitations, and interpretations of the findings have limitations. Foremost, research findings are based on self-reported cross-sectional data that limit exploration of underlying causal mechanisms and relationships.16 Undoubtedly, behavioral health disparities are complex and evidence is well-documented that income, race, ethnicity, and other social determinants of health have a profound impact on pediatric health disparities.27 Nevertheless, capturing the complexity of disparities is a primary challenge for researchers, and drawing a conclusive explanation requires a multilevel analysis of both upstream and downstream factors.2 Moreover, adequate surveillance is critical to determining accurate estimates of prevalence of mental health problems, burden and impact of disease, access to services, and outcomes for CYSHCN.1 Surveys such as the NS-CYSHCN attempt to collect this data, but limitations of surveys are significant. For example, the collection information is insufficient, the questions are not valid measures of mental disorders, and parent report may be subject to recall and reporting bias. To supplement surveys, longitudinal, life course, epidemiologic behavioral health studies are needed that collect vital information about mental health and comprehensive information about the social determinants of health.1,2 Future research requires a robust strategic agenda that addresses the complexities of behavioral health disparities.

Conclusion

CYSHCN experience behavioral health disparities in the prevalence of MEB problems and conditions and in access to needed mental health services. Further investigation is needed to fully identify those children with MEB problems, the mechanisms contributing to the disparities, and the effective strategies to prevent and provide interventions to CYSHCN. Investing in research and interventions is critical to reducing behavioral disparities that create adverse consequences for children across the life course, their families, and society.

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Authors

Anne Elizabeth Glassgow, PhD, is an Assistant Professor, Department of Pediatrics, College of Medicine; and the Director of Research, Coordinated Healthcare for Complex Kids (CHECK) Grant, University of Illinois at Chicago. Benjamin Van Voorhees, MD, MPH, is an Associate Professor and the Head, Department of Pediatrics, College of Medicine; the Physician-in-Chief, Children's Hospital University of Illinois; and the Project Director, CHECK Grant, University of Illinois at Chicago.

Address correspondence to Anne Elizabeth Glassgow, PhD, Department of Pediatrics, University of Illinois at Chicago, Clinical Sciences Building, 840 S. Wood Street (MC 856), Chicago, IL 60612; email: aglassgo@uic.edu.

Disclosure: The authors have no relevant financial relationships to disclose.

Acknowledgment: The authors thank Allison Stinson, MPH (University of Illinois Hospital & Health Sciences System) for her critical review of the manuscript.

10.3928/19382359-20170920-02

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