Health Care of Youth Aging Out of Foster Care

Children and youth in the child welfare system in the United States frequently face multiple obstacles in accessing needed health care services. All adolescents face challenges as they move into adulthood, but most have nurturing families to provide stability and emotional and economic support. Approximately 66 000 individuals in foster care (16% of the foster care population) are aged 16 and 17 years of age, and another 17 000 are 18 through 20 years of age.¹ As youth in foster care mature into adulthood, they face enormous challenges, including lack of family support; educational deficiencies; employment and income problems; inadequate or inappropriate living arrangements; medical, dental, and mental health problems; and lack of health insurance.

Youth in foster care face medical and mental health challenges at significantly higher rates than other children, often as a consequence of the circumstances that led to their removal from their home and sometimes exacerbated by their experiences in foster care.² These health issues include developmental delays, mental retardation, emotional adjustment problems, chronic medical problems, birth defects, substance abuse, and pregnancy. In the foster care population, more than 60% of youth will have mental health problems during their lifetime; 30% to 40% of adolescents are coping with mental health issues, including posttraumatic stress disorder; and more than one-third of older adolescents have a chronic illness or disability.^3,–5 

High rates of physical and emotional health needs mean that youth aging out of foster care require comprehensive health coverage that recognizes and addresses their unique needs. Unfortunately, research has shown that they rarely receive such services. The Northwest Foster Care Alumni Study, one of the most comprehensive studies to date of the status of youth aging out of foster care, revealed that only 47% of foster care alumni said they had health insurance when they exited foster care.⁶ The Midwest Evaluation of the Adult Functioning of Former Foster Youth Study, which examined the progress of youth in 3 states where they received foster care for at least 18 months, found that 51% stated they had no health insurance coverage.⁷ The third wave of Midwest Evaluation interviews, conducted when subjects were aged 21 years, revealed that only half of the young adults who had aged out of foster care had medical insurance, and only 39% had dental insurance. Approximately 20% had not received any medical or dental care in the past year, citing their lack of health insurance as the main reason.⁸ Another study found that 55% of young adults who had exited the foster care system had no health insurance.⁹ The percentage of young adults (average age, 20.2 years) who had exited foster care with no health insurance was double that of young adults who had not been in foster care. According to the US Census Bureau, 30% of all young adults 18 through 24 years of age do not have health insurance.¹⁰ Multiple studies and surveys over the years show clearly that youth in foster care have 3 to 7 times as many chronic health conditions and behavior/mental health problems as do those who have not been in foster care; however, they are only about half as likely to have health insurance.

Historically, the child welfare system has been a responsibility of states. Each state designs and administers its child welfare and foster care programs as well as other human service programs that support children, both in and out of foster care, at various stages along the path to adulthood. Although the federal government’s role in the child welfare system has expanded over the years, states provide the care for children within their child welfare system. The primary responsibilities of state child welfare agencies are to ensure the safety of children who have been maltreated, find permanent homes for such children, and promote the health and well-being of children in foster care. Another primary responsibility is to prepare teenagers in foster care for independent living.

Through many policies and programs, the federal government has taken steps to support older youth in foster care. Beginning in 1986 with an amendment to Title IV-E of the Social Security Act, the Independent Living Initiative provided states with funds to prepare foster youth for independent living. The Adoption and Safe Families Act of 1997 (Pub L No. 105-89) promoted adoption and permanent homes for children, including older children and youth. The Foster Care Independence Act of 1999 (Pub L No. 106-169, John Chafee Foster Care Independence Program), which replaced the Independent Living Initiative, increased funding to states for the purpose of preparing older youth for independent living and gave states the option of extending Medicaid coverage for youth aging out of foster care through 20 years of age. The “Chafee option” also allows states to use some independent living funds for housing and requires that states provide some level of services and supports to young people 18 to 21 years of age who have left foster care.

The Chafee option was a turning point in its recognition of the need to better serve older youth during a critical transition in their lives. Previously, all states were responsible for ensuring that services, including health care services, were provided to youths in foster care until 18 years of age. Over the past decade, several states have exercised the “Chafee option” to extend Medicaid services to 21 years of age for children who age out of foster care. Of those that have not yet used the “Chafee option,” many states provide health care coverage to children who leave foster care through a number of mechanisms, including state Medicaid waivers, Children’s Health Insurance Program (CHIP) coverage, medically needy Medicaid coverage, and other sources.¹¹ Beginning in 2014, as a result of a provision in the Patient Protection and Affordable Care Act of 2010 (Pub L No. 111–148), all youth aging out of foster care will be eligible for Medicaid coverage until they reach 26 years of age, regardless of their income.

Beyond the concerns of continued health coverage, the federal government has also prioritized the need for states to more actively coordinate the health care and services that youth in foster care are receiving. The Fostering Connections to Success and Increasing Adoptions Act (Pub L No. 110-354) of 2008 requires states to work with youth to develop a transition plan within the 90 days before a youth ages out of foster care. The plan should contain as much detail as the youth chooses and should address issues including housing, health insurance, education, mentoring, continuing support services, workforce supports, and employment services. With regard to health care, this transition plan should include arranging for enrollment in Medicaid if the youth meets eligibility criteria to maintain the medical home and ensure continuity of care.

In addition, the Fostering Connections to Success Act requires states to develop, in coordination and collaboration with the state Medicaid agency and in consultation with pediatricians and other experts, a plan for the ongoing oversight and coordination of health care services for all youth in foster care. The state health plan must ensure that, among other provisions, every child receives appropriate health screenings and follow-up, continuity of care using the medical home model, and oversight of medications for each child.^*

Although strengthened provisions on health care coverage and coordination of care have represented important progress on behalf of older youth in foster care, they have also created new challenges for the future. In the short term, extended coverage to 26 years of age will not begin until 2014, leaving a cohort of exiting youth until that time at risk for not seeing the same benefits as those who will follow them. Additionally, access to care will continue to be a concern, particularly if Medicaid payment rates do not improve. Of paramount concern is that adult medicine physicians and other clinicians will be reluctant to care for or may even close their practices to young adults aging out of foster care because of low payment rates. This may place greater pressure on pediatricians or family physicians to fill this service need, but it is likely that service gaps will remain.

1. Pediatricians should continue to provide medical homes for youth in foster care.

2. Pediatricians should work collaboratively with child welfare workers to ensure youth in foster care receive the health care services they need.

3. Pediatricians and other physicians are encouraged be informed about their state’s programs to provide health care coverage for older youth both in foster care and aging out of the foster care system.

4. Pediatricians should work with child welfare and other community partners to educate youth who are aging out of care before 2014 that they will become eligible for Medicaid coverage effective January 1, 2014.

5. Pediatricians and other physicians are encouraged to learn more about the health needs of youth aging out of foster care and to learn about resources of the American Academy of Pediatrics available to assist in meeting these needs (see Healthy Foster Care America Web site: www.aap.org/fostercare).

6. Pediatricians have a unique opportunity, as the primary source of health care for children in foster care, to teach youth at transition the skills needed to navigate the adult health care system. Pediatricians should help their young adult patients transfer their health records, understand their health issues, and link them with a new adult primary care physician as well as needed mental health, reproductive health, and dental services.¹² Adolescents often feel invulnerable at this stage of development, so youth leaving foster care may need help understanding why their ongoing health care should be a priority.

7. Especially for youth with special health care needs, pediatricians should work collaboratively with child welfare workers to help plan for transition from child welfare. The pediatrician brings a “whole child” perspective of health care for these youth. Working together ensures that these youth receive comprehensive health services.

1. Pediatricians play a vital role in advocating on behalf of children and adolescents. Working in concert with the national American Academy of Pediatrics (AAP) on federal efforts and AAP chapters and districts on regional, state, and local efforts, pediatrician advocacy can ensure that the physical, mental, social, and emotional health needs of adolescents and young adults are appropriately represented when the issue of health care for youths aging out of foster care is addressed. States have made a large investment in ensuring that these children arrive at the doors of adulthood safely, and it is prudent to ensure that this investment is protected by making sound transition plans.

2. The AAP supports pediatrician and AAP chapter efforts at the state level to extend foster care eligibility for older youths from 18 to 21 years of age.

3. The AAP supports pediatrician and AAP chapter efforts at the state level to extend health care coverage for youths in foster care from 18 to 26 years of age, in advance of Medicaid coverage becoming mandatory for these youths in 2014.

4. The AAP supports pediatrician and AAP chapter efforts at the state level to improve Medicaid payment to ensure all youth have continuous access to health care in a medical home. In addition to providing appropriate and adequate Medicaid payment, states should consider implementing financial and other incentive programs (eg, expedited payment processing, performance payments, etc) to encourage more pediatricians to provide medical care to children and youth in foster care.

5. The AAP additionally supports federal, state, and local efforts that recognize the health care coverage needs of young adults who have exited foster care and who are engaged in education or training programs.

Paula K. Jaudes, MD

Moira Ann Szilagyi, MD, PhD, Chairperson

Walter Fierson, MD

David A. Harmon, MD

Pamela High, MD, MS

Paula K. Jaudes, MD

V. Faye Jones, MD, PhD

Paul J. Lee, MD

Lisa Maxine Nalven, MD, MA

Lisa Albers Prock, MD, MPH

Linda Davidson Sagor, MD, MPH

Elaine E. Schulte, MD, MPH

Sarah H. Springer, MD

Thomas Tonniges, MD

Pamela E. High, MD, Chairperson

Elaine Donoghue, MD

Jill J. Fussell, MD

Mary Margaret Gleason, MD

Paula K. Jaudes, MD

Veronnie F. Jones, MD

David Rubin, MD

Elaine E. Schulte, MD, MPH

Claire Lerner —Zero to Three

Jennifer Sharma, MA — Child Welfare League of America

Mary Crane, PhD, LSW

James G. Pawelski, MS

Cynthia Pellegrini

Daniel J. Walter