FAQ
Arizona DeafBlind Community (ADBC) Phoenix group meets every second Saturday. Contact ADBC Secretary for more information at secretaryadbc@gmail.com
The exact number is not known. However, the estimates are approximately 1.2 million people that are DeafBlind or have Combined Vision and Hearing Loss.
According to the 2016 report by National Center on DeafBlindness, there are a total of 9,635 children and youth counted as DeafBlind in the United States.
According to the 2015 census for Arizona, there are 23,625 potential individuals who are DeafBlind or have Combined Hearing and Vision Loss.
HKNC National Registry in Arizona have 250 DeafBlind/CVHL on their database.
To register with the HKNC Registry of Persons Who are DeafBlind, please use the link below:
No. It is common for people who are DeafBlind to have some residual hearing or vision. They may considered themselves DeafBlind or have Combined Hearing and Vision Loss (CVHL).
DeafBlindness is a combination of vision and hearing loss that prevents access to communication, the environment and people.
https://nationaldb.org/library/page/1934
Other terms for deafblindness include dual sensory impairment, combined vision and hearing loss, dual sensory loss, and dual sensory disability. Some people spell the word deafblind with a hyphen, or a slash between “deaf” and “blind.” When the word DeafBlind is capitalized, it connotes cultural identification.
Many people who are Deaf or DeafBlind consider themselves to be part of a distinct cultural group. A group is considered a cultural group when it has its own language, norms, traditions and values. For example, most people in the USA who identify as members of Deaf or DeafBlind Culture use American Sign Language (ASL) as their first language and typically do not view their inability to hear as a deficit or disability. According to the norms and values of their cultural group, they have normal, fulfilling, interactive lives without depending on sounds or spoken language to communicate.
When the words “Deaf” and “DeafBlind” begin with a capital letter, these terms refer to a person’s cultural identification as a member of a language community.
By contrast, when we refer to the medical condition of not being able to hear well, we write “deaf” with a lowercase “d.” Similarly, “deafblindness” refers to the medical view of a DeafBlind person as someone who has impaired hearing and sight, but it makes no reference to the person’s language and cultural affiliation.
DeafBlind people can get training to learn to become independent. One example is training in orientation and mobility so they can learn to travel independently. Contact your local or state rehabilitation agency, or an organization such as Helen Keller National Center (HKNC), a national rehabilitation center for DeafBlind youth and adults. You can also contact Arizona Blind for the Center and Visually Impaired (ACBVI).
Refer to an article below that deals with practical considerations and awareness of DeafBlind cultural norms.
About 50 percent of people in the DeafBlind Community have Usher Syndrome. This is a genetic condition where a person is born deaf or hard of hearing, or with normal hearing, and loses his or her vision later on in life from retinitis pigmentosa (RP).There are three kinds of Usher Syndrome. If a person has Usher 1, s/he is born deaf, and starts to lose h/his vision later on. If a person has Usher Syndrome 2, s/he is born hard of hearing and starts to lose h/his vision later on. With Usher 3, a person is usually born with normal vision and hearing, or with a mild hearing loss, and start to lose both senses later in life.
Other common causes of deafblindness include birth trauma, optic nerve atrophy, cataracts, glaucoma, macular degeneration, or diabetic retinopathy. Some people may be born with hearing and visual impairments through birth trauma or rare causes such as CHARGE sunroom or cortical visual impairment. Others may become DeafBlind through accidents or illnesses.
DeafBlind people can often travel independently, and/or with family, friends or Support Service Providers (SSPs). Many uses public transportation-buses, light rail, Dial-A-Ride, Paratransit, or Taxis.
DeafBlind people use many types of technology and equipment in their daily lives. Examples includes mobility canes, closed circuit television (CCTV), Braille, and large print watches or clocks, to name only a few.
Some websites are:
DeafBlind people use many different ways to communicate. They use sign language that is adapted to fit their visual field such as tactile sign language, high visual communication skills such as tracking. Communication methods vary with each person, depending on the causes of their combined vision and hearing loss.
Qualifications to become an SSP:
- High School/GED.
- At least 18 years of age.
- Have basic computer and typing skills.
- Be comfortable with physical touching and limited personal space.
- Ability to travel independently.
- Ability to communicate through various modes such as emails, texting, videophone, and/or video relay service.
- Successfully pass all background checks including fingerprint clearance.
- Successfully complete ACDHH SSP training program or similar approved training.
- Effectively use communication systems preferred by individuals who are DeafBlind and/or CVHL (i.e. ASL, Tactile, Spoken English, or using High Visual Communication Skills, i.e. tracking)
- Agree to follow ACDHH SSP Program Guidelines and Professional Code of Conduct.
If interested or to get more information, contact Julie Stylinski @ j.stylinski@acdhh.az.gov