THE IMPORTANCE OF CONNECTION IN DEAF-BLINDNESS

BY MEGAN COTE, PEGGY MALLOY AND ANN BISWAS

When my son was first diagnosed with deaf-blindness, it was difficult to find information to support his and our family's educational, medical, and emotional needs. We felt despair, desperation, alone, and unconnected. Once our family became involved in the deaf-blind network, we met families, interested friends, educators, and professionals—a community of trusting relationships and effective partnerships that will last a lifetime and allow us never to feel alone again." – Patti McGowan, President of the National Family Association for Deaf-Blind

WHAT IS DEAF-BLINDNESS?

Although the term deaf-blind implies a complete loss of vision and hearing, in reality, it refers to individuals with varying degrees of vision and hearing loss. The types and severity differ from individual to individual, but the key feature of deaf-blindness is that the combination of losses limits access to auditory and visual information.

Approximately 10,000 children and youth (birth through 21) have been identified as deaf-blind in the United States. Within this population there is great variability in terms of age, race/ethnicity, cause of deaf-blindness, severity and type of hearing and vision loss, and whether they have additional disabilities (e.g., physical, cognitive) or health challenges.

There are many causes of deaf-blindness. Those that are present or occur around the time of birth include prematurity, childbirth complications, and numerous congenital syndromes. Deaf-blindness may also occur later in childhood or during adulthood due to causes such as meningitis, brain injury, or inherited conditions.

Because deaf-blindness significantly impacts an individual's ability to access information and communicate with others, children who are deaf-blind have a unique experience of the world. Therefore, it is critical that both families and educators have access to training and support to know how to best support the growth and development of the child with deaf-blindness. Creating predictable routines in safe environments with trusted communication partners is critical for their development.

IMPORTANCE OF THE FAMILY

"I never really realized how alone I was until I found my tribe of people that understood me and my child." – Minnie Lambert, Board Member of the CHARGE Syndrome Foundation

Because deaf-blindness is a low-incidence disability, families usually carry the burden of educating others about the impact that their child's disability has on his or her unique learning needs. They often feel isolated because it is not typical to have others living nearby who also have children with this rare disability. As a result, families often find themselves in the dual role of care provider and educator. This not only creates exhaustion but also a sense of loneliness. Connecting families to high-quality resources and to other families of children with deaf-blindness is essential to fostering a sense of support and community.

RESOURCES FOR FAMILIES OF CHILDREN AND YOUTH WITH DEAF-BLINDNESS

"Providers who work with and for your child should be willing to explore additional options while keeping the health and development of your child and family a priority. We look for therapists and doctors who see us as valued partners and refer to others when needed." – Rita Fredericks, Mother to Liam and Miles and Advocate

Numerous agencies and organizations are available for families of children with deaf-blindness in the United States that provide a range of services and supports including information, referrals, services, and opportunities to interact with other families. Some are relevant to all families regardless of the cause of their child's deafblindness. Others focus on specific causes of deaf-blindness such as CHARGE syndrome, peroxisomal disorders, and Usher Syndrome. State Deaf-Blind Projects: The primary resource for most families of children age birth through 21 in the United States is their state deaf-blind project. There is one in every state, as well as Puerto Rico, the District of Columbia, the Pacific Basin, and the Virgin Islands. These projects are funded by the U.S. Department of Education's Office of Special Education Programs (OSEP). The types of services offered vary from state to state, but typically include resources, guidance, and annual workshops or other events. Most state deaf-blind projects include a staff member in the role of family engagement coordinator who works directly with families. To find your state deaf-blind project, visit the National Center on Deaf-Blindness website at nationaldb.org and click on "Contact Your State Deaf-Blind Project" in the upper right corner of any page.

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ONLY CONNECT: (Clockwise from top left) Aryan and Krishangi Shroff; Jackie Freeman; Parker Chen; and Miles (in chair) and Liam Fredericks. Connecting families to other families of children with deaf-blindness is essential to fostering a sense of support and National Center on Deaf-Blindness: The National Center on Deaf-Blindness (NCDB) works closely with state deaf-blind projects and other partners to improve educational results and quality of life for children who are deaf-blind and their families. Its primary mission is to support state deaf-blind projects as they work to increase the knowledge and skills of educators and families and promote sustainable services.

Most of NCDB's goals are aligned with four national initiatives designed to address key needs of children with deaf-blindness, their families, and service providers:

• Family Engagement – Increasing the quality of family support and helping families acquire knowledge and skills to help them partner with service providers and advocate for their children's needs

• Identification and Referral – Increasing the identification of children and youth who are deaf-blind so they can begin receiving appropriate services as early as possible

• Interveners and Qualified Personnel – Building the knowledge and skills of educators serving children who are deaf-blind through expansion of personnel development opportunities and adoption of interveners and teachers of the deaf-blind

• Transition – Improving transition outcomes so that students successfully move from high school to post-secondary education or employment and community life

Like the state deaf-blind projects, NCDB is funded by OSEP. In recognition of the complexity of the disability of deaf-blindness, the U.S. Congress has authorized programs for children who are deaf-blind as part of education legislation since the late 1960s. NCDB and state deaf-blind projects are the most current programs and are funded under the Individuals with Disabilities Education Act.

NCDB does not provide direct services to families, but it has an extensive website with an "Info Center" containing information about deaf-blindness, resources on educational practices, data on the population of children and youth who are deaf-blind, and resources in Spanish. The website also has a special "For Families" section with information to help families learn and connect to agencies and organizations. This section also includes "Key Topics for Families," with tips, strategies, and supports that families of children with deaf-blindness can use to help them navigate their child's services and their family's everyday life. The NCDB website is nationaldb.org National Family Association for Deaf-Blind: The National Family Association for Deaf-Blind (NFADB) is the largest national nonprofit organization empowering families with individuals who are deaf-blind. NFADB believes that people with deaf-blindness are valued members of their communities and should have the same opportunities and choices as others in the community. As such, they seek to empower the voices of families with individuals who are deaf-blind and advocate for their unique needs. NFADB's purposes include:

• Advocating for families with individuals who have deaf-blindness

• Fostering family-to-family relationships

• Promoting partnerships

• Providing information and resources

• Offering training opportunities

NFADB also has an Affiliate Network of family organizations with which it partners on activities that improve opportunities and services for individuals who are deaf-blind. The NFADB website is nfadb.org Helen Keller National Center for Deaf-Blind Youths and Adults: The Helen Keller National Center (HKNC) provides training and resources to people age 16 and older who have combined vision and hearing loss. Its headquarters is in Sands Point, New York, but it also has offices in ten regions across the United States. HKNC's services include:

• An on-campus comprehensive vocational rehabilitation program

• A virtual comprehensive vocational rehabilitation program. Consumers can take an individual class or a full program online.

• Peer-learning groups

• Virtual youth programs offered in the summer and during school vacation weeks as well as a group for teens 14 and 15 years old

• Regional services (e.g., consultation, advocacy, assessment, training, referrals). These services include ten regional representatives and eight deaf-blind specialists currently in eight states and growing. Deaf-blind specialists can assist with training needs and job development and training in these states. (For more information, visit helenkeller.org/hknc/deaf-blind-specialists.)

• Two comprehensive community services programs that provide services to individuals locally in New York City, Westchester, and Long Island as well as in California from Bakersfield to San Diego

• Online classes for consumers, families, and professionals who work with individuals who are deaf-blind and online learning tools and resources. Please visit their online courses and resources for additional information:

• Online classes: helenkeller.org/hknc/online-courses

• Learning tools: helenkeller.org/hknc/onlinelearningtools The HKNC website is helenkeller.org/hknc and HKNC Regional Services can be found at helenkeller.org/hknc/nationwide-services

The CHARGE Syndrome Foundation: The mission of the CHARGE Syndrome Foundation is to lead and partner to improve the lives of people with CHARGE syndrome locally, nationally, and internationally through outreach, education, and research. The primary goals of the Foundation include:

• Growing outreach and support programs

• Increasing the knowledge base

• Promoting awareness

• Building networks and partnerships

• Investing in leading edge research

Fundraising activities allow the CHARGE Syndrome Foundation to support families through conference and recreation assistance grants, a director of outreach, and a state family liaison program to keep families connected and informed. The Foundation also invests in research and spreads awareness through webinars, e-news, a newsletter, social media sites, and a biennial international conference. The CHARGE Syndrome Foundation website is chargesyndrome.org

Global Foundation for Peroxisomal Disorders: The mission of the Global Foundation for Peroxisomal Disorders (GFPD) is to improve the lives of individuals with these disorders by funding research, championing scientific collaboration, and empowering families and professionals through educational programs and support services. GFPD supports and connects families in 40 countries and 50 states through:

• Educational conferences

• Regional meetups

• Online support groups

• Webinars and virtual events

• Parent to parent mentoring programs

• Access to trained family support facilitators

• A medical equipment exchange program

• Bereavement support

• Advocacy training

• Medical research funding

The GFPD website is thegfpd.org

Usher Syndrome Coalition: The Usher Syndrome Coalition (USH) provides information and support to individuals and families affected by Usher syndrome worldwide. Their focus is to raise awareness of and accelerate research on the syndrome. USH's specific goals include:

• Hosting the annual USH Connections conference

• Maintaining an international registry to connect the Usher community

• Providing education via "USH Talks," a video podcast series on the latest research developments and community stories

• Networking through the USH Blue Book email forum

• Providing local information and support through USH ambassadors The USH website is usher-syndrome.org and USH's "Just for Parents" page is usher-syndrome.org/our-story/just-for-parents.html •

ABOUT THE AUTHORS:

In her more than 25 years in the field of deaf-blindness, Megan Cote has worked as a classroom teacher, coordinated multiple state-level grants, taught graduate coursework at the University of Kansas, and directed the Kansas DeafBlind Project. She has worked for NCDB since 2015 as the initiative lead for Family Engagement. Peggy Malloy is NCDB's Information Services and Technology Coordinator and has worked for technical assistance and dissemination projects on deaf-blindness since 1997. Her areas of expertise include product development, implementation science, and library research and management in the fields of deaf-blindness, disabilities, and health care. Ann Biswas is a Project Specialist - Writer for NCDB. Prior to joining NCDB, she was a principal lecturer at the University of Dayton, where she taught medical and professional writing. Over the years, she has written numerous publications and media programs for health organizations, medical schools, and health professionals from a variety of disciplines.