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Videos Offer Guidance for Adolescents with Special Health Care Needs as They Transition to Adulthood
Video series is first to explain implications
Participants in the Transition of Care video series gathered for a red carpet premiere.
The transition from adolescence to independent young adulthood can be an especially challenging time for those with special health care needs. A great deal of planning and forethought is needed to help these patients move from pediatric to adult health care providers, from education to employment and from their family home to independent living when possible.
To help patients, families and caregivers understand the many important issues they face prior to and during this period of transition, Nemours has developed a series of videos now available on YouTube. The videos, made possible by a grant from NYMAC (New York/Mid-Atlantic Consortium for Genetics and Newborn Screening Services), cover four main areas:
- Legal/Financial: Addressing health care power of attorney, health surrogacy laws and legal guardianship, estate and long-term planning, and special needs trusts.
- Residential: Discusses the variety of residential programming available to people with disabilities in the adult world and how to make sure young adults are registered with the right services in their state.
- Vocational: Offers guidance to make sure young adults get the most out of high school and are aware of their options, including post-secondary education, job training programs, day programs and competitive employment. Vocational rehab services, adult disability resource centers and family-to-family information networks are also addressed.
- Medical Self-Management: Describes ways for young people to be more involved as they move from the pediatric to adult health care world, including what skills they will need to be successful and how being an adult patient will be different from their pediatric experience.
Well before they reach the age of 21, families and caregivers must help emerging adults with special needs build skills in health literacy, self-management and self-advocacy – in short, the skills required to manage their own conditions and lives. As the videos demonstrate, all young people, regardless of diagnosis, need to be as involved as possible in their transition plans, which are often complicated by the need for multiple providers and changes in service systems.
“At Nemours, patients begin to transition to adult health care between the ages of 18 and 21,” said Cory Nourie, MSS, MLSP, social work coordinator in the Transition of Care program at Nemours/Alfred I. duPont Hospital for Children. “We recommend a gradual process that meets everyone’s needs, rather than an abrupt shift from one care team to another.” Nourie was the driving force behind the video project. She added: “As the videos illustrate, a great place to start is by developing strategies for increasing independence.”
Ideally, patients with special health care needs will begin to work on transition plans with their pediatric providers and their families at about age 14. Patients aged 16 and older often start engaging in more comprehensive discussions about planning for their future, identifying solutions and getting connected to resources in their community.
The videos are the first of their kind to offer this type of detailed guidance and information for families and caregivers dealing with transition of care for young adults with special needs, showing real services, young people and the programs in their lives. We encourage you to view them and share them with others who may benefit from the series.