Resources for Youth with Disabilities, Families, & Professionals

Find information and resources on chronic conditions and disabilities below.

For Adolescents with a Chronic Condition

• The National Center for Immunization and Respiratory Diseases provides a list of COVID-19 resources for people with disabilities.
• Got Transition offers many useful resources for youth and families on the transition from pediatric to adult health care. For example, the Transition QuickGuide has information and resources for young people with disabilities and chronic conditions to take charge of their health and career goals.
• Youth with disabilities can join organizations for self-advocacy support and mentoring, including:
  • Autistic Self Advocacy Network
  • Family Voices
  • The ARC
  • Eye to Eye
  • Partners for Youth with Disabilities

For Parents, Caregivers and Families

These resources may refer to "parents," but they also apply to caregivers, such as guardians, aunts, uncles, or grandparents.

• Understood focuses on youth with learning and attention disorders and offers parents and caregivers many guides for advocating for their child’s education and working with schools to get the right accommodations. The Decision Guide is a series of quizzes to help you organize your thoughts about school choices, school services, and other aspects of life that could be difficult to navigate. How IDEA Protects You and Your Child helps parents and caregivers understand the Individuals with Disabilities Education Act, identify the special education services available to their child, and take steps to develop an Individual Education Program.
• Wrightslaw is a resource for parents and caregivers, educators, advocates, and attorneys to find accurate, reliable information about special education law and advocacy for youth with disabilities.
• Parent to Parent USA is a program for parents or caregivers of children who have special health care needs and who are seeking information and emotional support. Parents and caregivers are carefully matched with a trained Support Parent who can offer guidance, resources, and support.

For Health Care Providers

• Got Transition is a hub of information and resources for health care providers on the transition process to adult health care. The Six Core Elements of Health Care Transition 2.0 informs a practice resource on integrating youth with intellectual and developmental disabilities into health care offices.
• Patient-Centered Medical Home Resource Center is a resource for health care practices that houses tip sheets, briefs, curriculum, and other materials that can be used to build capacity for transitions of primary care.
• Blueprint for Adolescent and Young Adult Health Care was developed based on the success of Mount Sinai Adolescent Health Center. This guide is a road map to providing integrated care that is youth-friendly and patient-centered.

For Service Providers

• National Association of County and City Health Officials runs a Health and Disability Program, which has tools and resources for including people with disabilities in local health department activities. The Health and Disability 101 Training educates staff on the benefits of inclusion, and Five Steps for Inclusive Health Promotion is a fact sheet you can use to put inclusion into action.
• Pathways to Inclusion is a comprehensive e-learning platform that begins with an evaluation of inclusion practices and recommendations for what you may want to study to improve them. Courses range from foundational to advanced.
• Guidelines for Assessment of and Intervention with Person with Disabilities helps psychologists implement ethical ways to make their practices accessible to, and enhance their relationships with, clients who have disabilities.