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Parents of Children Who Are Exceptional:

Physically or Mentally Ill -- or Physically or Mentally Disabled --

Note: The listed organizations have been categorized for ease of browsing. We recognize that many organizations will not fit exactly into one category, or will fit into more than one category.

General Health Information:

Study: Health Information on the Internet is Often Incomplete or Incomprehensible (May 2001): A recent study of four health topics on 25 Web sites found that "Health information on the Internet is inefficient, incomplete, and incomprehensible to many Americans," according to a spokesman for the California HealthCare Foundation, which funded the study. Topics studied were childhood asthma, depression, obesity and breast cancer. The study was published in the May 23 issue of the Journal of the American Medical Association.

JAMA also offers the public some suggestions for judging the quality of a health site. Go to http://jama.ama-assn.org, click on "JAMA Patient Page" and find the PDF file called "Health Information on the Internet." (Note: In order to view any PDF file, you will need software called Adobe Acrobat Reader. If you don't have it, you can download it for free here).

bulletU.S. National Library of Medicine (Free Access to Medline) - includes information in Spanish
bullethealthfinder (contains information in Spanish)
bulletMedem
bulletMayoClinic.com
bulletAmerican Academy of Pediatrics
bulletMedLine (National Institutes of Health) - also contains information in Spanish
bulletPubMed (National Library of Medicine) - an archive of published medical journals (some are not free)
bulletWebMD - information on health topics
bulletKidsHealth
bullet Social Security Administration - you might be eligible for benefits if you have a chronically ill child
bullet SCHIP - State Children’s Health Insurance Program - 1-877-KIDSNOW or 1-877-543-7669 (a toll-free number) - provides access to free health and dental care for low-income families.
bulletCenters for Disease Control and Prevention
bulletU.S. Department of Health and Human Services
bullet
bullet Safer Child's Your Doctor's Competency and Medical Accountability page
bullet Safer Child Medical Assistance page - for help in obtaining medical care
bullet Safer Child Mental Distress page - for help in obtaining help with mental and emotional issues

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Chronic Illnesses or Disabilities:

Study: Piracetam Doesn't Help Children With Down Syndrome: Researchers have found that Piracetam doesn't boost the intellectual ability of children with Down Syndrome -- instead it acts as a stimulant, with such possible side effects as aggression, irritability and poor sleep. The study was published in the April 2001 issue of the Archives of Pediatrics & Adolescent Medicine.

bullet See this caution regarding obtaining health information from the Internet.
bullet Safer Child's Your Doctor's Competency and Medical Accountability page - includes information on buying prescriptions online and on CT radiation dosages for children
bulletNational Information Center for Children and Youth With Disabilities
bulletInformation on Organ Donation
bullet DisabilityInfo.gov - directory of government resources for people with disabilities
bulletPubMed (National Library of Medicine) - an archive of published medical journals (some are not free)
bulletThe Genetic and Rare Diseases Information Center (launched by the National Human Genome Research Institute and the National Institutes of Health's Office of Rare Diseases): has a new information hot line for Americans with a rare or genetic condition: 1-888-205-2311
bulletThe National Center of Medical Home Initiatives for Children with Special Needs  -- goal is "to ensure that children with special needs have a medical home where health care services are accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally-competent."
bullet Social Security Administration - you might be eligible for benefits if you have a chronically ill child
bullet SCHIP - State Children’s Health Insurance Program - 1-877-KIDSNOW or 1-877-543-7669 (a toll-free number) - provides access to free health and dental care for low-income families.
bulletWheelchair Foundation - goal is to provide a wheelchair to anyone who needs one
bulletEaster Seals
bulletTourette Syndrome Association, Inc.
bulletCure Autism Now
bulletThe Autism Society of America - 1-800-3AUTISM
bullet National Institute of Child Health and Human Development - up-to-date information on autism
bulletAmerican Diabetes Association.
bullet Juvenile Diabetes Research Foundation International
bulletNational Institute of Diabetes & Digestive & Kidney Diseases (NIH)
bulletHelen Keller National Center for Deaf-Blind Youths and Adults (HKNC) - mission is "to enable each person who is deaf-blind to live and work in his or her community of choice."
bullet Sickle Cell Disease Association of America, Inc.
bulletNational Library Service for the Blind and Physically Handicapped
bulletLittle People of America, Inc.
bulletExceptional Parent Magazine
bulletSafer Child ADD/ADHD page
bullet Safer Child Page on Learning Disabilities or Giftedness
bullet MayoClinic.com - information to help you decide if your child should participate in medical research

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Life-Threatening Illnesses:

The Environmental Protection Agency Office of Water recommends that anyone with a weakened immune system take extra care with drinking water. A parasite living in lakes and rivers called Cryptosporidium can find its way into tap and bottled water. Ways to reduce risk: boil water rapidly for a minute and store it in clean containers; get a water filter with a pore size of "absolute one micron" (change the filter regularly); make sure any bottled water has been distilled, treated by reverse osmosis, or properly filtered.

bullet MayoClinic.com - information to help you decide if your child should participate in medical research
bulletInformation on Organ Donation
bulletNational Brain Tumor Foundation
bulletMake-A-Wish Foundation - grants wishes of children with life-threatening illnesses
bulletStarlight Children's Foundation - works to brighten the lives of seriously ill children.
bulletGilda's Club Worldwide - support group for people with cancer - 1-888-GILDA 4 U
bulletWheelchair Foundation - goal is to provide a wheelchair to anyone who needs one
bulletHospice Net
bulletNational Hospice Foundation
bullet Hospice Patients Alliance
bullet Social Security Administration - you might be eligible for benefits if you have a chronically ill child
bullet Camp Comfort - for children suffering bereavement
bullet Memorial Sloan-Kettering's Pediatric Cancer Care
bulletSafer Child Page on Medical Assistance
bulletSafer Child Page on Financial Assistance
bulletSafer Child Support for Grieving Parents and Children
bullet Safer Child's Your Doctor's Competency and Medical Accountability page - includes information on buying prescriptions online and on CT radiation dosages for children

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Other Helpful Links:

bulletFair Housing Accessibility FIRST Project - trains housing professionals in issues that confront the disabled
bullet SCHIP - State Children’s Health Insurance Program - 1-877-KIDSNOW or 1-877-543-7669 (a toll-free number) - provides access to free health and dental care for low-income families.
bullet Special Needs Family Fun - "offers family fun and special needs resources to enhance the quality and fun of family life for families with disabilities"
bullet Bridges4Kids - information resource on education for children with disabilities
bullet "66 Ways to Save Money" - from the Federal Consumer Information Center and the Consumer Literacy Consortium. Offers tips for ways to save money on prescriptions.
bullet KidsHealth - "Financial Management During Crisis"
bulletIn therapy-animal programs, animals are trained to bring comfort to ill, sad and lonely children in hospitals, nursing homes and schools. For information, try the Delta Society or Therapy Dogs Inc. (national organizations) or Dog-Play (which lists several local programs).
bullet American Pain Society - for help in managing pain
bulletNatural Medicines Comprehensive Database
bullet

Project Linus - collects handmade blankets for donation to children in need

bullet Camp Comfort - for children suffering bereavement
bulletWheelchair Foundation - goal is to provide a wheelchair to anyone who needs one
bullet Boundless Playgrounds - works to build wheelchair friendly playgrounds across America
bullet Social Security Administration - you might be eligible for benefits if you have a chronically ill child
bulletMake-A-Wish Foundation - grants wishes of children with life-threatening illnesses
bulletLocks of Love and also Wigs for Kids - specialize in making wigs for children who have lost their hair to chemotherapy treatments
bullet Hospitality for Family and Friends, Inc. - arranges for hotel rooms for families in need
bullet STARBRIGHT - creates projects that empower seriously ill children and teens
bulletIn therapy-animal programs, animals are trained to bring comfort to ill, sad and lonely children in hospitals, nursing homes and schools. For information on such programs, try the Delta Society or Therapy Dogs Inc. (national organizations), Puppies Behind Bars, or Dog-Play (which lists several local programs).
bulletSafer Child Communication Page
bulletWhat We Would Like All Young Adults To Know
bulletSafer Child's What Makes for a Great Parent?
bulletSafer Child Page on Medical Assistance - includes organizations that help children who are ill
bullet Safer Child's Your Doctor's Competency and Medical Accountability page
bulletSafer Child Page on Financial Assistance
bullet Safer Child Page on Learning Disabilities or Giftedness
bulletSafer Child Support for Grieving Parents and Children
bulletSafer Child Page on Parents' Health - for other helpful links to organizations and support groups not listed here

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Safer Child, Inc. is a 501(c)(3) charitable organization with federal tax-exempt status. Please note: 1) External organizations listed herein do not necessarily endorse Safer Child positions, nor do we necessarily endorse theirs. We list them as a courtesy and aren't responsible for their accuracy, completeness or content. 2) We recommend you maintain a healthy skepticism when reviewing information on the Internet; it might appear to be reliable --  yet actually be false, misleading, incomplete, out-of-date and/or intentionally harmful. 3) There might be material on the Internet that you disagree with or find objectionable; preview all sites before viewing them with your child. 4) We are not responsible for external addresses/phone numbers changing without our knowledge. 5) The information and commentary on this site are not substitutes for professional advice from your doctor, lawyer, or mental health professional. 6) Requests for permission to republish, copy and/or distribute any material found on this Web site should be directed to Safer Child, Inc.

This Web site is supported by donated services from SISNA of Eastern Washington and Northern Idaho,
and has received a grant from the Wendell P. & Barbara J. Marshall Family Trust in the Idaho Community Foundation.
Safer Child is also supported by Time4Learning.com, online education from preschool through middle school.
 

Copyright 2000, 2001, 2002, 2003, 2004, 2005, 2006, 2007, 2008 Safer Child, Inc. All rights reserved.