Information about Deafblindness and the Deafblind Manual Alphabet
AADB is a national consumer advocacy organization that promotes better opportunities and services for deaf-blind people. (From DB-LINK)
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family.
Council for Exceptional Children:
Jack Canfield—Much More than Chicken Soup! While many of you may know Jack Canfield from his Chicken Soup series, his work extends far beyond these popular books. Canfield started his career as a teacher, where he transitioned from teaching social studies to helping students increase their self-esteem. Today, Canfield teaches and coaches success principles and happiness to millions worldwide.
National organization that helps families and individuals affected by cerebral palsy. It provides educational material about CP, parents and caregivers can be better prepared for raising a child affected by this developmental disorder. There are many cases of children with CP also being deafblind.
Every state has at least one federally funded parent center, which provides parents of children with disabilities information about local educational services and their child's rights under IDEA. Visit this site to find your local parent center and browse general resources about special education.
DbI is the world association promoting services for people who are deafblind through international collaboration.
Deafblind info is an online directory of worldwide resources for and about people with combined vision and hearing loss. The site is sponsored by the Minnesota Department of Human Services, Deaf and Hard of Hearing Division, but is designed to be useful to people around the world.
A site from the American Foundation for the Blind for parents of children with visual impairments.
This site is for individuals interested in beginning or enhancing literacy instruction for children with combined vision and hearing loss. Its contents is also designed to provide literacy instruction for children with multiple disabilities and other complex learning challenges.
The Decibels Foundation's mission is to provide specialized early intervention, educational services, family support, and access to essential technologies for children with hearing loss from infancy through high school.
The Foundation is a proud supporter of the Caroline Bass Fund at Children's Hospital Boston.
The National Coalition on Deafblindness provides information and advocacy in a collaborative way to policy makers, fiscal agents, educational professionals and community leaders on behalf of children and youth who are deaf-blind, in conjunction and partnership with adults who are deaf-blind, families, and stakeholders.
The National Information Clearinghouse on Children Who are Deafblind created a rich repository of resources called DB-LINK. That website is no longer in service but the information can be found in the library of the National Center on Deaf-Blindness houses a large quantity of information (both online and off) related to deafblindness, services for children who are deafblind across the country, and education for children who are deafblind.
HKNC is a national program that provides evaluation, short-term, comprehensive vocational rehabilitation training, work experience training and assistance to deaf-blind clients for job and residential placements.
Information about Helen Keller and Eye Care
covering communication strategies for the deafblind.
National Deaf-Blind Child Count Maps:
Maps showing national Deafblind demographics.
The largest national network of families focusing on issues surrounding deaf blindness.
NORD has been created by a group of voluntary agencies, medical researchers and individuals concerned about Orphan Diseases and Orphan Drugs. Orphan diseases are rare, debilitating illnesses which strike small numbers (fewer than 200,000) of people. Orphan drugs are therapies which alleviate symptoms of some rare diseases, but which have not been developed by the pharmaceutical industry because they are unprofitable. Acts as a clearinghouse for information about rare disorders and to network families with similar disorders together for mutual support.
Pragmatic language skills are the most abstract and complex of all language skills. Even when the child has age-appropriate vocabulary and syntax (grammar) skills, she or he may not yet have learned how to use these skills in a socially appropriate manner for specific social purposes. Young children with typical hearing acquire these skills rapidly between 3 and 4 years of age and are able to use these pragmatic language skills using complex language. Children with hearing loss acquire these skills much more slowly even when provided early intervention and preschool services.
The Federation for Children with Special Needs
The Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities, their professional partners, and their communities.
An advocacy and support organization where you can connect with other families, find information on the latest research and legislation, read blogs, sign up for the newsletter, and join advocacy efforts.
The Office of Special Education Programs supports projects to improve and enhance services that are provided by state and local education agencies to children and youth who are deafblind. This is done through a program of grant awards that address technical assistance, research, development, preservice, and inservice training and parental involvement activities.
An excellent site (funded by Perkins) for parents of young children with visual impairment or multiple disabilities, including deaf-blindness. It's made up of articles and blog posts written by parents on child development, parenting, education, technology, eye conditions, and art/recreation. It also includes a section where parents can ask and answer questions.
Washington Learning Systems :
Has developed new materials that include activities for adults and young children that encourage early language and literacy development from birth through preschool.
They are appropriate for children with disabilities as well as children who are developing typically. The development of these materials was supported by Grant H324M020084 from the U.S. Department of Education, Office of Special Education Programs. Free reproducible language and early literacy activities in English and Spanish.Developed by Angela Notari-Syverson, Ph.D. and colleagues.
This site offers instant, free, and easy-to-use web-based translation services that work very well for quick notes from school, progress reports, service requests, or just to keep in touch with people who speak a language different from your own. The site is a service of SDL International, which also offers more advanced translation services for more complex needs
Guide dogs for the blind is a world class training program, which can lend support through life's challenges.
This site provides socks, foot care items, and support products for sensitive feet. Check out their socks that fit under AFOs.
Hot Braille provides numerous resources related to learning and communicating in Braille. Hot Braille provides a list of Braille and talking book libraries in the United States and offers simple Braille translation on their site. You may contact Hot Braille in order to learn more about more advanced Braille printing services.
The assistive technology exchange in New England. Here you can look for or list assistive technology devices for sale or for free. The goal of getATstuff is to help get assistive technology devices that are no longer being used into the hands of people who need and can benefit from them. The participating programs are: Connecticut, Maine, Massachusetts, New Hampshire, Vermont & Rhode Island