Parents and Families

As part of NEC's mission to provide information dissemination and technical assistance to families, necdbp.org has resources available for parents and families. You may use the links below or on the navigation menu to the left to explore these resources.

Family Associations
Family Days/Weekends
Family Resources
Local and Regional Resources
Family Websites
Conditions Related to Deafblindness
Latest Research in Blindness/Hearing Loss

Family Associations

There are several family associations available for parents and families of children who are deafblind. Each association seeks to advocate for family members of children who are deafblind within that state. Currently, we have information available for family associations in Maine and Massachusetts, and we are planning to add information for associations in Connecticut and New Hampshire.

These family associations include:

Maine Parent Foundation

Massachusetts Deafblind Family Alliance [MADBFA]

Family Days/Weekends - The next Family Day will be at Honey-Pot Hill Orchards in Stow, MA. The address is 144 Sudbury Road, Stow. Call 978-562-5666 for directions to the orchard. On Saturday, September 26th with a Rain date of Sunday, September 27th. Go to there web site at www.honeypothill.com/ for additional information about the orchard. This is a NEC sponsored event and each NEC registered family gets a bag of apples and a packet of materials on deafblindness and how everything (including apple picking) is part of learning and can be included in a curriculum. To register send me an email at nec@perkins.org or call 617-972-7514. We will need to know the number of people attending in your family, number of adults, number of children and all the ages of the children up to age 21. We look forward to seeing you and your family!

Local and Regional Resources

Deafblind Resource Guide for Maine

Link Maine: Link Maine provides information regarding events and services related to disabilities in the State of Maine.

e-Advisor: If you are a parent or teacher of a visually impaired child, the e-ADVISOR is a web site designed for you. The e-Advisor is a collaborative project designed to facilitate communication between parents, teachers and doctors of visually impaired children. find information on eye disorders, take a virtual tour, find resources or join discussion boards.

Federation for Children with Special Needs: The Federation is a center for parents and parent organizations to work together on behalf of children with special needs and their families. Organized in 1975 as a coalition of parent groups representing children with a variety of disabilities, the Federation operates a Parent Center in Massachusetts that offers a variety of services to parents, parent groups, and others who are concerned with children with special needs. The Federation includes links to Parent Centers in other states.

Helen Keller National Center for Deaf-Blind Youths and Adults: Helen Keller is the only agency that provides vocational and rehabilitation services on a national basis exclusively to youths and adults who are deaf-blind. For more information on programs and services in New England contact Mary Ellen Barbiasz at (781)259-7100 or email her at HKNC1meb@comcast.net.

Maine Bureau of Rehabilitation Services

State Departments of Education: Connecticut, Maine, Massachusetts, and New Hampshire

Family Resources

Family & Advocates Partnership for Education: The Partnership is a new project which aims to inform and education families and advocates about the Individuals with Disabilities Education Act of 1997 and promising practices

Family Sign Language Program: The Family Sign Language Program for children ages of 0-3 who are enrolled in their area Early Intervention Center are eligible. This service is designed to offer families with deaf and hard of hearing children an opportunity to learn sign language and gain knowledge about issues concerning deaf and hard of hearing children and adults. Classes are free of charge to families and their childcare providers.

Maine Parent Federation: The Maine Parent Federation is a private non-profit organization that provides information, support and training to parents and professionals through numerous grant funded projects. Through its projects, individuals can receive information about: specific disabilities, parenting issues, education, services, support groups and other resources available to assist families and professionals within the home, school and community.

National Association for Parents of the Visually Impaired, Inc. (NAPVI): NAPVI promotes and provides information through workshops and publications that help parents meet the needs of their blind or visually impaired children. Other goals include promoting the development of state and local organizations of, by, and for parents of children with visual impairments; increasing public awareness about people with visual impairments so they are accepted by society; and foster communication and coordination of services among federal, state, and local agencies and organizations involved with people who have visual impairments.

National Family Association for Deafblind (NFADB): NFADB is a national network of families who focus on issues surrounding deafblindness. NFADB advocates for all persons who are deafblind, supports national policy to benefit people who are deafblind and encourages the founding and strengthening of family organizations in each state.

New England INDEX: Information for people with disabilities, a project of the University of Massachusetts Medical School at the Shriver Center - UMASS. INDEX is a free information and referral service for people with disabilities. INDEX is a collection of the largest, the most complete and the most up-to-date databases of disability services in Massachusetts. INDEX is the coordinator of the Massachusetts Network of Information Providers (MNIP), a collections of disability agencies that coordinate information and referral efforts. Information available includes a resource database of programs and agencies that provide services to individuals with disabilities and Consultant Registry, Physician Registry and a Dental Registry. Visit the web site for more information. www.disability info.org call 800-642-0249 or 781-642-0248 or email them at: info@disabilityinfo.org

Special Child: This online publication provides educational resources and support to parents and caregivers of children, adolescents, and young adults with disabilities. You can read and share stories with other parents and providers, as well as locate useful resources and products. Special Child is provided by The Resource Foundation for Children with Challenges (RFCC), a nonprofit charity organization.

Technical Assistance ALLIANCE for Parent Centers: Parent Centers - Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs) - in each state provide training and information to parents of infants, toddlers, children, and youth with disabilities and to professionals who work with them. This assistance helps parents to participate more effectively with professionals in meeting their children’s educational needs. The Parent Centers work to improve outcomes for children ages birth-26 years with all disabilities (emotional, learning, cognitive, and physical).

Staff members in these centers, as well as at the ALLIANCE offices, are likely to be parents of children with disabilities or have disabilities themselves. The common experience with the families they serve results in uncommon commitment to improving outcomes and results for children with disabilities. In Connecticut call: 860-739-3089, in Maine call: 207-623-2144, in Massachusetts call: 617-236-7210, in New Hampshire call: 603-224-7005 or call the main number at 888-248-0822.

Family Websites

Other helpful family sites you may find useful:

Project SPARKLE is a program of individualized learning that enhances the ability of parents of children who are deafblind to fulfill their roles in the development and education of their children.  Through Project SPARKLE, parents will have access to information, training, and resources in their homes via DVD technology and the Internet.

The SPARKLE training program is provided to parents utilizing DVD technology and supported with a Parent Guidebook and the SPARKLE web site. For additional information visit the web site.

Handouts for SPARKLE:
SPARKLE Flyer
SPARKLE Invite Packets (with parent releases) for Connecticut, Maine, Massachusetts and New Hampshire

Conditions Related to Deafblindness

These links have been reproduced from the DB-LINK Selected Topics page.

Charge Syndrome:

CHARGE Case Studies: An overview of CHARGE with case studies.

CHARGE Syndrome Foundation: International organization of parents and medical experts.

Minnows Place: A web site designed by a parent and contains CHARGE links as well as good general information for families, including links to the CHARGE Chat room and the CHARGE listserv.

New CD Rom on CHARGE Syndrome Dr. Jan van Dijk along with Dr. Catherine Nelson and Arno de Kort, MD, have produced a new CD-Rom that updates information from both the 2002 and 2005 editions. This newest version emphasizes the effect of intervention strategies specific to challenging behaviors, feeding problems, depression, cochlear implantation, communication and the development of literacy. Order info: www.aapnootmuis.com.

Usher Syndrome:

A-Z to Deafblindness: Usher Syndrome: British site providing an overview and information on how the condition can affect individuals with Usher's and their families.

Boys Town Research Registry for Hereditary Hearing Loss: A good overview of Usher's Syndrome with information on vision, hearing and balance problems.

National Institute on Deafness and Other Communication Disorders (NIDCD): Provides an overview of Usher Syndrome including a description of the three types of Usher's and links to additional resources.

Texas Association of Retinitis Pigmentosa: Provides large print page of Usher's Syndrome information.

Latest Research in Blindness/Hearing Loss:

Research advancement related to retinal degenerative diseases funded by the Foundation
Fighting Blindness. Check out the links below. Exciting information!

Visit http://www.blindness.org/research.asp?id=326 or view Good Morning America's coverage at www.blindness.org/audio/media/GoodMorningAmerica_08.wmv