This page has reports [real life stories told by youth and young adults with disabilities] and links to other organizations and agencies that can give you information about health.
Surviving a Doctor’s Appointment Ever go to the doctor alone? Do you know what you will need in order to do that? Along the road to independence comes the time when you will want to take charge of your health care. See the first steps here.
Preparing for a Doctor’s Appointment Going to a doctor’s appointment can be stressful. It helps to prepare for the appointment and here are some tips written by a young adult on information that you need to get together before you go to the appointment.
Communicating With Your Doctor Maia, now in college, shares her strategy for talking to her doctor when she started to take over management of her health care.
Your Rights at the Doctor’s Office
Doctor appointments to manage your health care should be done in partnership with the doctor. Sometimes it can be hard to know what your rights are and how to advocate for those rights. Read about it here.
Keeping Track of Your Health Care Information
Keeping track of your health care information can be difficult. It can be tough to figure out a system that works for you. Here are some tips on keeping track of your health care information.
Keeping a Health Diary Maia, a college student, finds that keeping a health diary helps her be independent and take over her health care. She uses the diary to track her health to best inform her doctors, her family and herself.
Contract with Your Doctor Maia, a senior in high school, has a lot of experience with doctors and hospitals. As a result, she has developed a unique agreement with her health care provider, a contract! In this fact sheet, she shares her advice for creating one with your doctor.
Transition to Adulthood The transition from childhood to adulthood can be difficult. When you are a child you can depend on your parents to help you make hard decisions, but when you become an adult you are expected to be able to make decisions on your own.
Switching to an Adult Doctor
Is it time for you to switch from a pediatrician to an ‘adult’ doctor? Read this quick tip sheet for ideas to consider when planning your switch.
Healthy and Ready to Work
This site has lots of information and resources on transition issues, including government resources and materials that can help youth (and families) as they approach adulthood make a smooth transition to adult health care and employment.
Kids Health KidsHealth provides doctor-approved health information about children from before birth through adolescence. Created by The Nemours Foundation’s Center for Children’s Health Media, KidsHealth strives to provide families with accurate, up-to-date, and jargon-free health information they can use. The site separates into three different areas for kids, teens and parents.
Disability & Health This site provides a service called, “Kids Quest,” that intends to get kids to think about people with disabilities and some of the issues related to participation in daily activities, health, and accessibility. Kid’s Quest gives a glossary of terms and instructions on how to find info on the site. It also gives info to adults on how to incorporate discussions in classrooms and at home.
Disability Direct This site was created on July 26, 2000 to provide one-stop online access to resources, services, and information available throughout the Federal government. It is mostly associated with the President’s New Freedom Initiative for People with Disabilities as a way to provide info on Federal laws and programs.
The Boulevard It is a resource listing of products and services for People with Disabilities, Elderly Citizens, Caregivers and Healthcare Professionals
California Disability Alliance CDA is a statewide, grassroots organization consisting of persons with disabilities and their supporters. They have a broad agenda for promoting the health, independence and full community inclusion of persons with disabilities. The site also provides links to other organizations based on health care and civil rights advocacy.
Missouri Coalition for Quality Care The MCQC is a non-profit statewide Organization concerned with the care and protection of older and disabled persons receiving long term care in Missouri. It is there to monitor nursing homes and making sure that they are providing the best care for consumers in Missouri.
League for the Hard of Hearing (Center for Health Care Access) The center was created to ensure that health and mental health care facilities and services are accessible to people who are deaf, hard of hearing and deaf-blind in New York State. Nationwide, it also offers advocacy and education to people getting those services and provides info about accommodations for health care providers.
Osteogenesis Imperfecta Foundation The Osteogenesis Imperfecta Foundation, Inc. (OI Foundation) is the only voluntary national health organization dedicated to helping people cope with the problems associated with osteogenesis imperfecta. The Foundation’s mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.
National Institute of Child Health & Human Development National Institute of Child Health and Human Development is part of the National Institutes of Health, U.S. Department of Health and Human Services. The NICHD conducts and supports research on processes that determine and maintain the health of children, adults, families and populations. NICHD research is also focused on restoring capacity when disease, injury, or a chronic disorder intervenes in the developmental process.
AAP-Emergency forms AAP-Emergency forms, to encourage youth to prepare in the event of an emergency