The National Coalition on Deafblindness was formed in 1987 in response to a need to provide feedback to legislators and policy makers regarding the ongoing needs of children who are deafblind and the reauthorization of Individuals with Disabilities Education Act (IDEA). Founding members of the coalition include

• American Association of the Deaf-Blind
• American Foundation for the Blind
• Association for the Education and Rehabilitation of the Blind and Visually Impaired
• CHARGE Syndrome Foundation, Inc.
• Council of Schools for the Blind
• Helen Keller National Center
• National Association for Parents of the Visually Impaired
• National Family Association for the Deaf-Blind
• Perkins School for the Blind
• The Teaching Research Institute

Since that time, the National Coalition has maintained an active role on the Consortium for Citizens with Disabilities Education Task Force. Advocacy efforts on the part of the coalition have focused on legislation in education and rehabilitation, helping legislators to understand deafblindness as a unique and complex disability, and to appreciate the important role the federal government plays through of its discretionary programs with regard to this low incidence disability.

Today, the National Coalition on Deafblindness is 2,000 member organization of parents, professionals, deafblind people and agencies serving the population who are deafblind. There have been many successes since the coalition began but in 2005 we find ourselves with a growing population and diminishing resources. Since the mid 1980s the number of children who are deafblind needing services has nearly tripled - increasing from roughly 4,000 to more than 10,000 today. At the same time the amount of federal funding for this group has remained level funded at $12.8 million.

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In response to this crisis the National Coalition on Deafblindness has decided to launch an advocacy campaign. The Coalition has embarked on an authorization strategy continuing with FY2009 to strengthen support for children who are deafblind and their families. If the appropriation strategy is successful, appropriators may be able to help fill the gap between the needs of the growing population of children who are deafblind and the federal funding available to assist them.