Adolescent Health in an Evolving Health Care Landscape: Part Two
While much has changed in the health care landscape since our first post in this series in December, the challenges adolescents face as they transition to adulthood and the health services needed to ease that transition have not. Our first post focused on potential threats to adolescents’ reproductive health services. As lawmakers are discussing proposals that include reductions in guaranteed services and cuts to Medicaid, we’d now like to look at how these changes could impact special populations of adolescents: those with chronic medical problems, those who are system-involved and those who identify as LGBTQ and gender-expansive. These teens are particularly vulnerable to getting lost in a complex health care system, while also experiencing issues with growth, brain development, growing exposure to alcohol and drugs, and increasing independence.
Snapshot into the unique health care challenges of these special populations
System-involved youth: Youth within the child welfare or juvenile justice systems have substantially increased rates of chronic physical and behavioral illness and adolescent childbearing compared with non-system involved peers. Unfortunately, system-involved adolescents also experience significant challenges accessing adequate health care. For example, youth in foster care not only face complex legal and administrative issues (e.g. consent issues) when accessing health services, they also experience care coordination challenges while transitioning within and outside of the child welfare system. While Medicaid is the primary insurer for child welfare-involved youth, there are a number of challenges to care within the Medicaid program, particularly for older youth when they age out of protections within state Medicaid programs such as Early and Periodic Screening, Diagnostic, and Treatment (EPSDT). Additionally, emancipated youth often no longer have access to a medical home or the social support needed to navigate the health care system.
Youth with complex chronic conditions: For the 20 percent of youth with chronic medical conditions, such as diabetes or lupus, dealing with their illness and its treatment often increases psychological stress. These youth are at high risk for co-morbid mental health disorders, with depression and anxiety typically affecting 25-30 percent and suicidal ideation occurring in 15-20 percent. Mental health disorders are associated with increased hospitalizations and poor transition to adult care in these youth, and can also adversely affect academic achievement, social and family functioning, and overall quality of life. Receiving much of their medical care from subspecialists, these youth often face barriers to getting mental health evaluation and treatment, as most pediatric subspecialists are not trained to assess mental health and subspecialty settings have limited mental health resources. On top of the costs and complexity of their medical management, mental health care is often an overwhelming additional burden to these youth and their families, due to high co-pays, complicated insurance policies and long waiting lists for mental health services.
Sexual and gender minority (SGM) youth: Challenges for LGBTQ youth exist at every turn in our society. They experience a range of reactions from family members, school officials, classmates and others in their communities – anything from a lack of understanding to outright rejection, isolation, discrimination and victimization. In addition to these societal challenges, there are many barriers in our health care system that limit the best health outcomes for SGM youth. For example, many SGM youth experience significant obstacles to accessing appropriately trained health care providers and needed health and psychosocial services. The stress and isolation they often experience can cause serious psychological distress, leading to high levels of anxiety and depression. Rates of suicide attempts among transgender individuals are reported to be as high as 40 percent. Young transgender women and young gay and bisexual men of color are also at extremely high risk for HIV. Currently one in four young transgender women of color are living with HIV and one in two young black men who have sex with men will become infected with HIV in their lifetimes. Additionally, many SGM youth are denied insurance coverage for essential health services, such as puberty-blocking medications, cross-gender hormones and gender-affirming surgery.
We at PolicyLab are currently working on multiple research projects related to special populations of adolescents, including:
- Documenting the prevalence and type of health conditions and health care utilization needs among adolescent and young adult mothers with child welfare system involvement to improve programs and policies supporting this population in health care transitions, parenting and reproductive health care access.
- Understanding the mental health needs of youth with chronic medical conditions, to improve mental health intervention in pediatric subspecialty settings.
- Informing policies to support appropriate prescribing of psychotropic medications to Pennsylvania’s child welfare-involved youth.
- Evaluating the effectiveness and implementation of maternal and child home visiting services to underserved adolescent and young adult-led families.
- Documenting the prevalence and type of health conditions and health care utilization needs among transgender youth to improve programs and policies that achieve gender-affirming health care access.
- Understanding the barriers and facilitators to care for transgender youth in general and in particular among young transgender women at risk for HIV.
Ensuring policy changes don’t reduce health care access and delivery for youth in special populations
Given the potential drastic changes to the health care landscape that Congress is currently discussing, it is important that we examine how key policies may change and affect adolescents in special populations and the ability of their providers and health systems to follow best practices to support their health and well-being.
There are several threats to critical health policy protections for youth in special populations both in Washington and within states, including:
- Potential cuts in Medicaid, which could limit access to insurance coverage for system-involved youth, particularly youth in foster care and adopted youth who have special Medicaid eligibility. Cuts to Medicaid may also limit access to important service delivery protections, including EPSDT and care-coordination services.
- Potential cuts to funding for the Ryan White HIV/AIDS Program. These funds support primary medical care and support services for uninsured or underinsured persons living with HIV and are a critical resource for adolescents with HIV infection who rely on these funds to access medication and health care.
- Possible changes in regulations and coverage around contraception as a preventive health benefit or to the family planning services offered through Title X could reverse the low rates of unintended pregnancies and their related costs that we’ve been able to achieve today. This is particularly important for youth with special health care needs for whom access to contraception has traditionally been overlooked and for system-involved youth who are at particularly high risk for early childbearing.
- LGBTQ religious exemption policies/bathroom bills. Beyond basic human rights to live as one identifies, bathroom bills have serious negative psychosocial and health consequences for gender non-conforming youth.
- Potential elimination of essential health benefits – including maternity and newborn care, mental health services, preventive services and pediatric care – from insurance coverage.
There are many unknowns about the future of health care policy and how it could impact adolescents’ health. By contributing interdisciplinary research that enables PolicyLab and our partners to advocate for what’s best for adolescents’ health, we hope to help shape policies as they are developed, help adolescents in special populations access the services they need and, ultimately, ensure adolescents have a smooth transition into adulthood.