The Transition Team
Young adults, together with members of their immediate and extended family, professional and volunteer caregivers, service coordinators, physicians and specialists are part of the medical transition team.
Taking responsibility for healthcare should be based on each person’s abilities. For young people with medically fragile conditions and profound disabilities, they need to learn to the maximum extent possible to manage their own healthcare, such as scheduling appointments, arranging transportation, taking medication, filling prescriptions, and talking to doctors (6). While each young person should be encouraged to actively participate in his/her own life and make his/her own choices to the greatest degree possible, for the purposes of this e-Toolkit focused on individuals with medically fragile conditions it is understood that the young person may require ongoing assistance from family members as well as service coordinators to manage and coordinate these activities. Planning should be focused on each person’s abilities, interests, and personal preferences to the degree possible , and should be encouraged in their own way to take a direct role in all of the steps involved in developing and implementing the transition plan, in decision-making, self-care prevention and maintenance activities.
Goals of the Transition Team
- Create a personal health summary/profile. Keep and update important information about personal health, including plans for emergencies.
- Create a healthcare transition plan. Work with your primary care provider—your medical home physician or care coordinator– to develop a written healthcare transition plan that includes future goals, services that will be needed, who will provide them, and how they will be paid for.
- Understand and determine health insurance options and public assistance programs for adult care. If you’re unsure about eligibility, get advice from your physician, service coordinator, care coordinator, or a lawyer.
- Find adult primary care providers while the individual is still in the care of pediatric providers, identify a primary care doctor, specialists and nurses who work with adults with medically fragile conditions. Also start learning about community services and supports for adults with medically fragile conditions and their families.
- Integrate healthcare transition activities in the student’s Individualized Education Plan (IEP). Consider self-determination and self-advocacy skills, and healthcare self-management skills.
Special Considerations for Transition for Individuals Who are Medically Fragile
The Society of Adolescent Medicine defines transitions for adolescents with medically fragile conditions as the “ purposeful, planned movement…from child-centered to adult-oriented health-care systems, with the optimal goal of providing healthcare that is uninterrupted, coordinated, developmentally appropriate, psychosocially sound, and comprehensive.”(7)
Most adolescent and young adults with medically fragile conditions rely on publicly provided health, social and educational programs to meet their needs; some combine private insurance from their parents’ employers with public assistance. Most of these adolescents who live at home attend school, specifically oriented day habilitation and respite programs, while some adolescents live in residential care settings –skilled nursing facilities, or community group homes. Almost all of these programs and medical providers (physicians and nurses) function under age-specific limits and at 18 or 21, eligibility will change dramatically for these adolescents as they are defined as adults in terms of State and Federal benefits.