Transition for Youth with Autism and/or Epilepsy Demonstration Projects - Transition of care (TOC) is the process by which youth are transitioned from pediatric to adult medicine. This process can be difficult for many youths and their families. This is especially true of those with complex medical needs, such as epilepsy and other special needs. Epilepsy is one of the most common neurological disorders. In the USA alone, about 450,000 children live with epilepsy (<17 years old). Many of these children have special needs, including learning disabilities and other health issues. It is estimated that 9% of children with epilepsy have intellectual disability. Among special populations, such as children with autism or cerebral palsy, the proportion of those with epilepsy is especially high (20% and 30%, respectively). For these populations, TOC can be especially complex and traumatizing. While there are many organizations that assist with TOC, the process is fragmented, making it difficult for families to access care in a seamless and fluid way. In this proposal, we aim to develop a framework to support youth with epilepsy and special needs during TOC. Our goal is to create a framework that facilitates a smooth TOC process while addressing the diverse needs of both the youth and their families, encompassing medical, legal, societal, and emotional aspects. Acknowledging that many essential components are already in place but dispersed across various organizations at local, regional, and national levels, our proposed framework offers an integrated solution. It brings together key elements and stakeholders in a cohesive and efficient manner, ensuring a unified approach to TOC implementation. Our framework is structured around a clear distribution of tasks and roles, both time and space. It begins at the age of 13, marking the initiation of the transition process with a focus on education. This phase aims to equip youth and their families with the necessary knowledge and skills to navigate TOC effectively. Through tailored educational interventions, they will enhance their ability to articulate all needs, including diagnoses, medications, and social needs, thereby bolstering their self-efficacy. The legal learning skills will include applying for the least restrictive options for guardianship. Financial skills will address issues with medical insurance, employment, and other available governmental assistance. Societal skills target the ability to live independently. Affective skills are geared to prepare the family to enter the adult world, often requiring letting go of strong emotional bonds. The second phase of the project involves implementation, taking place between the ages of 17 and 21, marking the actual physical transition to adult care. This crucial step hinges on a “warm hand-off,” ensuring a seamless transfer by facilitating at least one joint visit with both pediatric and adult providers present. The final stage of the proposal focuses on ensuring sustainability. The overarching aim of establishing this framework is to create a model easily adaptable to other diseases and healthcare institutions. For widespread adoption, it is imperative to demonstrate its benefits for all stakeholders, including youth and their families, healthcare providers, and the medical system as a whole. Additionally, it must be proven to be financially viable. This project has been meticulously designed with measures in place to objectively demonstrate the benefits across all affected levels. We aim to illustrate that implementing this TOC framework will not only benefit youth and their families but also enhance medical care in a fiscally responsible manner, ultimately contributing to the betterment of society as a whole.
