Last Modified: 01/27/2016
Links to Family Support Resources
Below, NCHAM has catalogued links to websites pertaining to family support under the following topics:
General Information for Families
The Center facilitates cooperation among researchers, educators and clinicians whose efforts are directed toward a common goal: improving the future prospects of children having hearing loss, from mild to profound.
As part of Gallaudet University, the Laurent Clerc Deaf Education Center is dedicated to improving the quality of education afforded to deaf and hard-of-hearing students from birth to age 21 throughout the United States of America.
NICHCY is the national information and referral center that provides information on disabilities and disability-related issues for families, educators, and other professionals.
Information about Communication & Education
The National Institute on Deafness and Other Communication Disorders (NIDCD) (part of the National Institutes of Health [NIH]) conducts and supports research and research training related to disease prevention and health promotion, addressing special biomedical and behavioral problems associated with people who have communication impairments or disorders.
Gallaudet University's Technology Assessment Program (TAP) is a research group focusing on technologies and services that eliminate communication barriers traditionally faced by deaf and hard of hearing people.
Gallaudet University is a comprehensive, multipurpose institution of higher education for deaf and hard of hearing citizens of the United States and of the world. Beyond its undergraduate and graduate academic programs, the University also offers national demonstration elementary and secondary education programs.
The SKI-HI Institute goal is to enhance the lives of young children with special needs and their families. Many programs have been developed at the SKI-HI Institute for children who are deaf/ hard of hearing, blind/visually impaired, deafblind, multi-disabled, or who have any special needs.
This site contains advocacy and legislative information for parents and professionals including information on state and federal special education laws, to assist parents in the planning, decision-making, and monitoring of their child's IEP.
Supports the healthy development of infants, toddlers, families and pregnant women. Ensures availability of information and training on best practices regarding leadership, technical assistance and partnership/linkages.
Information about Health & Development
In addition to supporting the implementation of state-based tracking and surveillance systems, CDC EHDI actively supports research efforts to: Use information gained through EHDI programs to identify causes of hearing loss; determine long-term outcomes of early identification and related family issues; asses the effectiveness and cost of EHDI programs; collect information on referral rates from EHDI programs; and increase physician awareness and involvement.
Visit the Health Care Financing Administration's (HCFA) State Children's Health Insurance Program (SCHIP) website for materials of interest to various audiences regarding the passage of SCHIP, also known as Title XXI, as part of the Balanced Budget Act of 1997.
A bipartisan national organization, the NGA serves to identify priority issues and deal collectively with issues of public policy and governance at both the national and state levels.
(See above for description)
The goal of Bright Futures is to respond to current and emerging preventive and health promotion needs of infants, children, adolescents, families, and communities.
Zero to Three is national non-profit charitable organization whose mission is to strengthen and support families, practitioners and communities to promote the healthy development of babies and toddlers.
Family Support Organizations
Advice for parents trying to locate parent support groups from Laurent Clerc National Deaf Education Center
AG Bell serves as an information and support center for hearing impaired children who use auditory approaches to communicate.
ASDC is an organization of parents and families that advocates for deaf or hard of hearing children's total quality participation in education, the family and the community.
Beginnings is a Non-Profit Agency Providing an Objective Approach to Meeting the Diverse Needs of Families with Children Who are Deaf or Hard of Hearing and the Professionals Who Serve Them
Hands & Voices is a parent driven, non-profit organization dedicated to providing unbiased support to families with children who are deaf or hard of hearing.
Family Voices is a network of families from throughout the United States who have children with special health needs that speak on behalf of children with special needs.
Family-to-Family Health Information Centers (F2F HICs) are non-profit, family-staffed organizations that help families of children and youth with special health care needs (CYSHCN) and the professionals who serve them. Staff at F2F HICs understand the issues that families face, provide advice, offer a multitude of resources, and tap into a network of other families and professionals for support and information.
Parent Centers, comprised of Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs), provide training and assistance to the families of children of all ages (birth to 26) and with all disabilities (physical, cognitive, behavioral, and emotional). These are funded through the U.S. Department of Education's Office of Special Education Programs (OSEP) under the Individuals with Disabilities Education Act (IDEA).Every state has at least one PTI, and those with larger populations may have more. The CPRCs provide services to underserved families in smaller geographic areas.
For over 36 years Parent to Parent programs across the country have been providing emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained 'Support Parent'. Parent to Parent affiliates are present in most states; use their website's program finder to locate a program near you.