General Supports for Youth with Chronic Conditions & Disabilities and Their Families

First and foremost, youth with chronic conditions and/or disabilities are still youth. Sometimes, people without disabilities focus on youth’s conditions and minimize that youth with disabilities are still interested in and will benefit from establishing their identity, building friendships and romantic relationships, and finding their place in the world. These youth benefit from the same mentorship and developmentally appropriate information as their peers.

All youth with special health care needs, regardless of the severity of their condition, benefit from efforts that make it easier for them to get the care they need by helping them navigate complex health and service delivery systems.

Coordination. Coordination of care, involving health care providers, teachers, and community resources, can be challenging for youth with special health care needs and their families. The required time commitment alone can be substantial—2.5 percent of 12 to 17-years-old with special health care needs have parents, caregivers, or other family members who spend at least five hours a week coordinating their medical care.¹ Furthermore, 20 percent of adolescents with special health care needs who saw more than one provider in the last 12 months had a parent or caregiver report needing help with coordination of care or services, but only 16 percent of these parents and caregivers received this type of help.¹ Parents and caregivers must learn to be effective advocates for their children with disabilities, or find an advocate who can help them navigate the policies and bureaucracies related to their children’s needs. Some parents or caregivers hire advocates to help them navigate the complex special education system, but other families don’t have the financial resources to do so. Parents and caregivers can request free mediation to help them resolve special education disputes with educators; all parties must agree to participate.

Health care transition. Adolescence is full of opportunities and challenges, such as graduating from high school, entering the workforce or starting college, and gaining independence. Making the transition from pediatric to adult health care is another task that can be especially difficult for adolescents with disabilities.² Some youth—particularly those with complex conditions or neurological conditions—experience serious gaps in care when they transition to the adult health care system.^2,3

Got Transition is a cooperative agreement between the Maternal and Child Health Bureau and the National Alliance to Advance Adolescent Health and provides resources for health care providers, families, and young patients to improve the transition from pediatric care to adult health care.

Youth, their families, and providers may have different perspectives on how transitions are best managed. Issues may include confidentiality, risky behaviors, and health insurance coverage.^4,5 As noted above, adolescents with disabilities have the same interests and concerns regarding sexuality as their peers without disabilities, and they are equally likely to have had sexual experiences.⁶ Health care providers can support youth by ensuring that they receive age-appropriate information that is delivered in a way that matches their development.

Often, young people face an assistance “cliff” at age 21 when they lose eligibility for the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program, which provides medically necessary services to youth with identified health problems, and for benefits under the Individuals with Disabilities Education Act (IDEA), which funds special education services and supports. These young adults also lose access to services under Title V, which is a federal program that supports families of children with special health care needs, especially in coordinating their care. After age 21, these young adults are still covered by the Americans with Disabilities Act (ADA). However, in contrast with their earlier school experience where parents or caregivers are the primary advocates, adolescents with disabilities who enter college must assume responsibility for identifying and advocating for their own needs. Beyond the academic setting, additional transition concerns include assuming responsibility for current care; coordinating care; planning for future health care; supporting autonomy, personal responsibility, and self-reliance; gaining skills in self-management and knowledge of one’s condition; and getting referrals to services.⁴

Footnotes