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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.
Tips for Giving Yourself Medication
Now that you are becoming older, are you starting to take on more responsibility for things related to your health care? It can be hard to remember when and how to do certain things, including giving yourself medication. If giving yourself medication is a part of independence that you want to do, or get better at doing, here are some tips that may help.
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.
How to Work with Personal Care Assistants
When a young disabled person turns 18 years old, legally, they become an adult. He/she wants to be independent, but may need help with dressing, feeding, bathroom, exercising, and so on. That is where Personal Care Assistants (PCAs) or Personal Assistants come in. PCAs are hired and supervised by the person with disabilities. This article offers tips about being a supervisor for PCAs as well as how to manage relationships with PCAs.
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.
Got Transition is a federally funded national resource center operated by The National Alliance to Advance Adolescent Health. Our mission is to improve the transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families. It is home to the Six Core Elements of Health Care Transition, which defines the basic components of health care transition support for use by health professionals. Also included on the Got Transition website is an extensive set of transition resources, frequently asked questions for youth and families, and research and policy information.
Al-Anon and Alateen
Offer hope and help for families and friends of alcoholics
National Council on Alcoholism and Drug Dependence
Provides education, information, help and hope in the fight against alcoholism and drug addictions. *Includes information for youth
Taking the Bully by the Horns: Bullies, Self-esteem, Violence
Self-help book/web site helps kids deal w/ Bullies/Self-esteem/Violence. Supported by Schs/Parents. Explores what can be done about mental & physical bullying. 76.8% of students surveyed said they had been bullied/ It’s time to do something about it!
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.
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.
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.
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.
Indiana Family & Social Services Administration
Click on People with Disabilities for information and resources *basic services site for State Government*
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, to encourage youth to prepare in the event of an emergency
Transition time lines for children and youth
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