Transition encompasses a range of decision-making actions, which support youth as they transition from pediatric services and supports into adult care and services. Transition encompasses – health, independent or supported living, community involvement and participation, guardianship, and financial planning. Transition is a process, requiring early and advance planning and it is a continuous process. For young adults with medically fragile conditions and profound disabilities, there may also be a need for crisis care management, as well as end of life care planning. What is consistent is that the needs of each individual will continue to change and with it the plan will have to change as well.
- Everything changes when a youth transitions and becomes an adult. This is true for all youth. For youth with medically fragile conditions and profound disabilities, however, everything is different, including: physicians, services, health insurance coverage, education, residential options, support services, eligibility criteria, benefits, care providers, community programs and government funding supports.
- Transition requires coordination across many agencies, insurers, providers, and school. Families need ongoing guidance to shape a comprehensive, meaningful plan of vital, supportive community services.
- Transition from childhood and adolescence to adulthood for persons with medically fragile conditions is an ongoing cycle that is based on choices, goals and opportunities and not a single event that occurs once.
- Start planning early. Transition planning starts when a child is young. For families with children with medically fragile conditions, they often have already developed a personal health summary and have developed specific understanding of their young adult’s specialized health care needs as they have changed through time and development. This is a good time to review the personal health summary and make sure all of the information is up to date.
Transition Objectives for the Family
There are six goals for transition in the areas of health and healthcare as defined by the Maternal and Child Health Bureau (5). These goals or objectives are useful, practical guides for families of medically fragile young adults who represent and advocate for their needs.
- Increase understanding of the specific medical conditions and the treatments or interventions that are needed.
- Explain the medical conditions and needed treatment or intervention to others.
- Monitor health status on an ongoing basis.
- Ask for guidance from their pediatric medical healthcare providers on how and when to make the move from pediatrics to adult care.
- Learn about the systems that will apply to adults, such as health insurance, social security and other programs, as well as issues such as guardianship and power of attorney for healthcare.
- Identify both formal and informal advocacy services and supports they may need in order to be as independent as possible using trusted advisors/mentors.