General Guide

DISABILITY INFORMATION ON THE INTERNET

Information is important to the parents of children with developmental disabilities in making decisions about the best care for their child. However finding quality information easily and quickly can be difficult.

Activ Library's  Parent Portal aims to provide a starting point for parents to quality resources about developmental disabilities and covers books, videos and websites.

The Internet contains much valuable information, however managing the volume and quality of information is sometimes difficult.  The following guide looks at how to evaluate health information on the net, using search engines and some of the better general sites that are available.

Assessing the quality of sites

• Healthfinder "Searching the web for health information you can trust." A brief checklist to use when evaluating websites.

• National Center for Complementary and Alternative Medicine. Evaluating web-based health resources.

• CAPHIS Consumer and patient health information section. Finding it on the Web: A Guide to Finding and Evaluating Health Information on the Internet.

• National Cancer Institute Getting information from trusted resources

Search engines

When using search engines, it is important to remember that different countries use different terms to refer to "intellectual disability". In the USA the term used is "mental retardation", while in Britain they use "learning disabilities".

General sites for parents of children with disabilities

• Association for Children with a Disability. This is an Australian organisation based in Victoria which aims to offer information, support and advocacy for children with a disability and their families. It has a good set of links.

• Disability News Infochange Australia Brings together the latest news on what is happening in Australia.

• Exceptional Parent. The online version of the popular magazine for parents of children with disabilities. Activ Library has the print version.

• Family Village is an American site sponsored by the Waisman Center at the University of Wisconsin-Madison. It has a wide range of information about children with a disability.

• It's a Long Road. Contains information about the video "It's a long road" which is an honest and moving account of the emotions experienced by four mothers from Western Australia of children with disabilities.

• Just for Parents (and service providers). From Disability Resources Monthly,  this is a good list of sites aimed at parents of children with a disability.

• Our Kids supports a very active mailing list, which is for parents of children with disabilities. As well as links to other sites, the archive contains much of the material that has featured on the mailing lists. It now includes a special section for parents of teenagers.

• Special Child is an online publication for the parents and caregivers of children with special needs, published by the Resource Foundation for Children with Challenges in the US.

• Vicnet Disability Page. A useful set of links to Australian disability sites.

Information on specific syndromes and conditions

• The Caf Directory. This is an excellent British site that includes descriptions of different syndromes and conditions especially written for parents.

• Family Village. The Specific Diagnosis section of the Family Village site has extensive links to sites about a wide range of syndromes and conditions. As its name suggests, it is designed for parents.

• Genetic Alliance is an international coalition of individuals, professionals and genetic support organisations that provides information and support to people affected by genetic conditions.

• NORD The National Organization for Rare Disorders is an American association of voluntary health organizations serving people with rare disorders and disabilities. The Rare Diseases database contains brief information about a wide range of syndromes and conditions as well as links to websites where they exist. Further information can be purchased online.

• OMIM. This database is a catalogue of human genes and genetic disorders developed by NCBI, the National Center for Biotechnology Information. The information contained is clinical in a nature and includes links to Medline articles. Medline is a database of journal articles designed for the medical profession.

• PubMed. PubMed provides access to millions of journal citations and abstracts in the fields of medicine, nursing, dentistry, veterinary medicine, the health care system, and preclinical sciences. It includes access to MEDLINE® and to citations for selected articles in life science journals not included in MEDLINE.