Who is the e-Toolkit for?

This compilation of information and resources is designed to serve as a preliminary access point for families of children who are medically fragile, between the ages 15-26, who are navigating various transitions, including healthcare services and supports as well as residential and community living.

The intent of this toolkit is to help families gain knowledge about various topics including transition from pediatric to adult healthcare and services, healthcare insurance coverage, financial planning, and future care planning.

Defining Key Terms

The Transition e-Toolkit provides a full glossary of terms used in the transitioning of children from pediatric/youth programs into the adult world. Some commonly used terms are:

Children with Special Health Care Needs: Children and adolescents with special healthcare needs are “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.” (1). Continuous healthcare and support services “…lasting 12 months or longer” typically refers to regular primary and specialty physician care, nursing, supportive services, physical therapy, prescription medication and medical equipment.

Individuals Who are Medically Fragile: Children and adolescents with medically fragile conditions may have profound disabilities resulting in dependency on long-term care, respiratory support, increased usage of medical supports and services and intensive caregiver supports. Among children and adolescents with special healthcare needs are a smaller number of individuals who are medically complex, or medically fragile, including those with intense medical needs that result from multisystem disease states, technology dependence, or complex medication regimens (2).

Complex Medical Conditions: While there is no National Institutes of Health consensus definition of “medically fragile,” most definitions of medically fragile or complex are based on the existence of one or more complex chronic conditions (CCCs), such as cardiovascular malformations, respiratory diseases such as cystic fibrosis, congenital anomalies of the gastrointestinal or renal (kidney) systems, and immunodeficiency disorders (AIDS, sickle cell). These complex conditions may be the result of premature birth, serious traumatic injury, genetic disorders or the onset of serious conditions. (2)

Advocacy: While many definitions of advocacy exist, for the purposes of this Toolkit, advocacy is a process of “working with or on behalf of people to obtain services or resources.” (3)

Families: For the purposes of this Toolkit, the definition of families encompasses “parents, guardians, and caregivers who are working on behalf of a young adult with medically fragile conditions.”

Adolescents / Young Adults: For the purposes of this Toolkit, the definition of adolescent or young adults defines people who are medically fragile between the ages of 15 to 26.

Long-Term Care: For the purposes of this Toolkit, the definition of long-term care encompasses “a broad range of supports with daily activities that individuals need for a prolonged period of time. The services include but are not limited to: assistance with basic activities of daily living (ADLs), such as bathing, dressing; include money management, and medication management, use of personal assistance or various assistive technology.” (4)

Long-term planning also includes making decisions about future needs in the areas of medical care, support services, education, housing, and employment, legal, financial and other personal matters.

Transition: For the purposes of this Toolkit, Transition encompasses a range of decision-making actions, which support youth as they transition into adulthood. Transition encompasses – health, independent or supported living, community involvement and participation, guardianship, financial planning, and more. This Toolkit focuses on the transition from pediatric to adult services and supports. Transition is a process, requiring early and advance planning. Preparation for the Transition process may begin as early as age 14. Transition is a lifelong process and 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.