New England Consortium for Deafblindness
We’ve curated a list of useful resources for our families. Take a look at our directory of services for deafblindness, related conditions and general education material.
American Association of the Deaf-Blind (AADB)
AADB is a national consumer advocacy organization that promotes better opportunities and services for deaf-blind people.
The CHARGE Syndrome Foundation
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.
Cerebral Palsy Guide
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.
Center for Parent Informational and Resources
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.
Deafblind International (DbI)
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.
Financial Planning for those with Special Needs
In this Podcast, Affinia’s Cynthia Haddad, CFP®, ChSNC® talks with host Diana Clark about planning for people with disabilities. In the interview Cindy shares her personal motivation and role in helping establish the field of special needs planning. She shares stories, planning tips and tools and encouragement for parents and professionals to get started.
Literacy for Children with Combined Vision and Hearing Loss
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
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.
National Coalition on Deafblindness
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.
National Center on Deafblindness (NCDB)
“A national technical assistance center funded by the federal Department of Education, NCDB works to improve the quality of life for children who are deaf-blind and their families”
Helen Keller National Center for Deaf-Blind Youths and Adults (HKNC)
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.
National Deaf-Blind Child Count Maps
Maps showing national Deafblind demographics.
National Family Association for Deaf-Blind (NFADB)
The largest national network of families focusing on issues surrounding deaf blindness.
National Organization for Rare Disorders (NORD)
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.
Success for Kids with Hearing Loss
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.
Usher Syndrome Coalition
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.
An excellent site 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.
The Center for Accessible Technology in Sign
Educators, Learning ASL, Parents and Families
The Center for Accessible Technology in Sign is a joint project dedicated to providing accessibility to learning via sign language.
Educators, Learning ASL, Parents and Families
IDRT launches new program myASL Tech
Learning ASL, Parents and Families
Kiwa Digital has recently released a new app which includes American Sign language narration.
Educators, Learning ASL, Parents and Families, Visual Language
This is the second in a series of monthly emails with information sharing the research finding at VL2 center, activities to support your child’s development, links to other resources, and more.
Learning ASL, Parents and Families
ASL Nook is a fun website to help learn American Sign Language.
The Collaborative for Communication Access Via Captioning
Learning ASL, Parents and Families, Visual Language – Quality captioning universally is the CCAC mission. They invite you to join the online grass-roots project called the CCAC if you have interest in more captioning. Many people cannot comprehend speech well in group situations, even with other resources.
Baby Sign Language.com
Learning ASL www.babysignlanguage.com is a website that is available to help you and your children learn basic sign language. The Website is a collection of free resources created to teach baby sign language. The Website has a series of free tutorials, video dictionary, flash cards and wall charts.
Perkins Library has a plethora of materials for a range of accessibility needs and circulates more than half a million accessible books, newspapers and publications in braille, large print and digital audio formats annually to thousands of registered patrons with print disabilities in New England and beyond.
iPad Apps for Learners with Complex Additional Support Needs
The University of Edinburgh put together a list of helpful apps for people with complex needs. It has different categories, covering a range of topics from emotion regulation to choice making. This is a great resource for anyone trying to build their technology tools.
Connecticut Usher Syndrome Ambassador
Connecticut ambassador for the Usher Syndrome Coalition Mikaela Zito would love to serve as a resource for any new individuals that come to NEC from CT with a Usher Syndrome diagnosis. Please feel free to contact her using the link above or by emailing [email protected].
Our consultants cover all 5 states in our consortium (Connecticut, Maine, Massachusetts, New Hampshire, and Vermont). Here are a selection of resources local to our families.
Camp Sunshine, located on the shores of Sebago Lake in Maine, offers a retreat for families of children who have been impacted by cancer or other life-threatening illnesses. These week-long camps are provided at no cost to families and offer children a place to simply have fun while also offering parents and caregivers the opportunity to connect with others who have been through similar challenges. Each week is focused on a specific diagnosis, including Retinoblastoma, Brain Tumor, general Oncology, and even a week specifically for Spanish-speaking families of children with an Oncology diagnosis. Volunteers, many of whom have attended camp themselves in the past, serve as camp counselors and ensure that families are able to relax and have fun throughout the week. The camp is also staffed by a 24-hour on-site physician, allowing families to feel secure that any medical needs can be quickly addressed.
At Maine Parent Federation every staff member is either a parent or family member of persons with disabilities or special health care needs. They have a wealth of experience and knowledge about working with and navigating the service delivery systems of care in Maine.
Greater Massachusetts Special-Needs Events is one family’s mission to showcase all the accessible events of Massachusetts in a central website to make it easier for parents to find local services and events for their children.
Federation for Children with Special Needs provides information, support, and assistance to parents of children with disabilities. They work with families with children from birth to adulthood, providing individual assistance, training, and leadership development and support. They focus on education, early intervention, health care, transitions, children in foster care and group homes, and building strong family engagement to support all children, especially those children with disabilities, those at risk, and those with economic, cultural or linguistic barriers.
Family Ties of Massachusetts created their own guide of services after answering hundreds of calls a year from parents and professionals seeking information and services for children and youth with special needs. They aim to make information finding easier for families.
New Hampshire Family Voices began in 1994 as a grass roots network of families of children and youth with special health care needs for the purpose of sharing information, resources, health programs and policies. Now its is part of a network of families and friends of children and youth with special health care needs/disabilities around the nation. It lists a plethora of resources for New Hampshire Families.
Vermont Family Network seeks to empower and support all Vermont children, youth, and families, especially those with disabilities or special health needs. They are a great starting place for Vermont families looking for resources.