Special Issues Facing Adolescents and Young Adults with Medically Fragile Conditions
Moving from being a youth to an adult is a complex transition in every individual’s life. All adolescents must face many unique challenges as they transition to adulthood with many changes over a short period of time. A youth with a complex, chronic healthcare condition needs to be prepared to face many challenges. They include:
- Transition from being a “minor” to an adult at the age of 21 in New York State. This change of legal status from minor to adult offers new opportunities and new responsibilities, expectations, and decisions for families, based on the youth’s medical conditions and disability. Different situations define “adult” in different ways, such as:
- All males, regardless of the nature or impacts of their disability, must register for the armed services (selective service system) at age 18.
- Educational decisions and confidentiality activate at age 18.
- Guardianship, Health Care Proxy, and HIPAA (Health Insurance Portability and Accountability Act – Privacy and Security Rules) considerations are presented.
- Making Young Adults Active Partners: Whenever possible, adolescents and young adults should be encouraged to be active and engaged in the transition process, contributing values, ideas and choices based on the principles of self-determination with the family, school and medical professionals and caregivers. While this Transition Toolkit encourages participation of the individual whenever possible in decision making, the focus of the Toolkit is primarily on individuals with medically fragile conditions, and often but not always such individuals have decisions and actions facilitated by their parents and/or guardians.
- The Family & Care Circle in Personal Choices: The transition from school-based programs and pediatric care services to adult care services requires many choices, and residential choice is one of the most significant: individuals may move from their family home to an independent living arrangement or to a supportive or supervised community residence, or for a time to a nursing home. Parents and individuals will have to consider:
- School programs and services end. Legal entitlements that support a child’s medical and educational special programs and services change to non-entitlement adult programs and services.
- Individuals and parents may face gaps in services, waiting lists, and fewer available specialized services for adults.
- Often, the family will take on increased reliance to coordinate care, and meeting adult care physicians and specialists as well.
- Changes in an individual’s disabilities and chronic medical conditions occur as they age, moving either to greater self-care and health maintenance, or, for example, to periods of care in an inpatient setting.
- For some families it maybe necessary to learn how to manage serious emotional and behavioral disorders.
The Transition from School to Work
What happens when high school is over? Students with disabilities leave high school when they earn a regular high school diploma, or at the end of the school year in which your child turns 21. If they are unable to participate in general education programs, they may leave high school with an “IEP Diploma” based on successful completion of their Individualized Educational Plan.
Each adolescent or young adult with a medically fragile conditions is different – opportunities will vary depending on many factors, including academics, career and technical skills and specialized training, talents, abilities, interests, medical support needs, and individual choices. Job readiness, internships, volunteer work, vocational and employment services can all help a young person with disabilities and medically fragile conditions prepare for, find and keep employment that is a good fit. Working can help strengthen health and wellness, improve self-esteem, and increase productivity and independence.