National Coalition on Deaf Blindness Legislative Overview (MSWord)

Find out how many children in your state are deaf-blind?

Families

There are about 10,000 children in the US who are deafblind. Behind every child is a family that striving to do the best they can for this child while meeting the many other obligations that families face in 2008. These families face enormous stress and can feel like they are alone in facing these challenges. One of the most important and most valued services that state deafblind projects provide is the ability to connect families with other families who have similar experiences.

Many projects sponsor family retreats, events where parents, siblings and children who are deafblind can gather together. Parents attend workshops and network with other parents; siblings can exchange ideas and experiences with other children who have a brother or sister who is deafblind; and all of the youngsters participate in recreational activities. Many families report that these events are one of the only times that they can "vacation" as a family.

These events always receive the highest ratings on consumer surveys. The impact that they have on families is significant and long lasting. But, state projects have been forced because of dwindling budgets, to either cut back on or even eliminate these family events. Additional funding will allow projects to restore these vital services to families.

Fortunately, the state deafblind project offers training and support to educational teams. Kara's team attended a training series and developed skills to adapt the curriculum so that Kara does not miss critical information in the classroom. A technical assistance provider from the project has also been able to visit the classroom and has identified simple modifications to improve Kara's learning experience.

Personnel Shortage

There is a significant shortage of teachers qualified to work with children with special needs. The shortage in the area of deafblindness is acute. In 1996, McLetchie reported that 960 new teachers trained in deaf-blindness would be needed by 2006 (Corn and Spungin, 2003). Unfortunately, between 1996 and 2005, fewer than 140 new teachers of students who are deaf-blind completed teacher preparation programs. (Ferrell, 2001) In 1994, ten federally funded higher education programs were preparing teachers specifically in the area of deaf-blindness (Corn & Spungin, 2003; Corn & Silberman, 1999). In 2006, only four programs receive federal funds.

Need for On-going Technical Assistance

Often the technical assistance (TA) provided by the state projects and the national technical assistance and dissemination program are the only way to provide support to teachers and related service personnel. Technical assistance is the glue that holds these classrooms together. It is estimated that almost half of the project directors in the state projects will retire in the next five years. There is a critical need to train new leaders to take over these projects so that they can continue to provide the TA.

Digital Divide

Information can make a huge difference in outcomes for children with deafblindness. Access to information about emerging educational practices, research and technology can help education teams make good decisions and help parents advocate for the services that will benefit their sons and daughters.

The national technical assistance and dissemination programs and the state projects strive to make information available to families and school personnel. However, as programs have lost purchasing power due to level funding and the impact of inflation, many have moved to a paperless information delivery system. This saves money on printing and mailing costs so that precious resources can go toward training and technical assistance. However, a paperless system runs a very high risk of leaving out that group that is already under-served. Families with low incomes are the least able to access materials electronically and even less able to download and print information to share with their child's teacher.

Additional funding will allow state and national projects to make information available in all formats, electronic, braille, print and other languages.