• What does deafblind mean?
• Who is deafblind and why?
• How many people in New Zealand are deafblind?
• How do deafblind people communicate?
• What services and support are available for deafblind people?
• How do I get in touch with RNZFB deafblind services?
• Is there anyone else I can contact for support?

What does deafblind mean?

People who are deafblind have a combination of sight and hearing impairments that have a major impact on their lives. Most deafblind people have some useful sight and/or hearing, although there are some who are totally deaf and blind. Not everyone who is deafblind will use this word to describe themselves - they may prefer to call themselves vision and hearing impaired, deaf and vision-impaired, or something similar.

Deafblindness is a unique impairment which differs significantly from deafness or blindness alone. Deafblind people are likely to find that deafblindness has an impact on many parts of their life, especially:

• How they communicate, and how others communicate with them.
• Getting around the community.
• Accessing information.

Who is deafblind and why?

Deafblind people are a very diverse group. Some may be born deafblind, others will have been born deaf or blind/vision-impaired and become deafblind later on. Some deafblind people have multiple disabilities. Still others are born without a hearing or vision impairment and lose their hearing or sight later in life through accidents or illnesses. The biggest group of deafblind people are older people who were born sighted and hearing.

Some of the more common causes of deafblindness include:

• Rubella - if a pregnant woman becomes infected with rubella (German measles), her unborn baby can become deafblind.
• CHARGE - this is a syndrome that causes very complex disabilities, including vision and hearing impairments.
• Usher syndrome - people with Usher are generally born deaf or hard of hearing and then start to lose their sight as a result of Retinitis Pigmentosa (RP).
• Causes related to the ageing process.

How many people in New Zealand are deafblind?

There are thought to be more than 1,500 people in New Zealand whose deafblindness has a significant impact on their lives. There are also a larger number of people with some lesser degree of combined vision and hearing loss.

How do deafblind people communicate?

Deafblind people communicate in many different ways. It will depend on such things as when they became deafblind, what sight and hearing they have (if any), whether they have any other disabilities and who it is they are communicating with. Some of the many ways include:

• Speech. Many deafblind people speak and many have enough sight and/or hearing to understand speech, sometimes by lip-reading.
• Sign (such as New Zealand sign language). Some deafblind people will learn different ways to sign, such as touching the other person's hands to follow their signs.
• Reading and writing. Some deafblind people can read large print. Others may use faxes, emails and computer equipment to help them use communicate in writing.
• Braille. This is a system of writing using raised dots that can be read by touch.
• Deafblind manual alphabet. This is a way of making shapes for different letters on to the deafblind person’s palm.
• Print on palm (also called Block). This involves writing letters with your finger onto the deafblind person’s palm.
• Pictures, photographs and symbols. These are often used by people who were born deafblind or who have other disabilities.
• Objects. Objects can be used to tell people what is happening next or for people to make choices. Again, they are often used by people who were born deafblind or who have other disabilities.

What services and support are available for deafblind people?

The RNZFB provides a range of services for people who are deafblind and for the other people in their lives. Some of these are provided by its Deafblind Services, and some by other RNZFB staff with input from Deafblind Services. Services include:

• Information and advice.
• Support to develop ways to communicate.
• Practical support with tasks and teaching new skills.
• Support to learn new ways of getting around safely.
• Social and leisure activities.
• Emotional support.
• Support to access other services, employment, equipment and funding.
• Training for others who are involved with deafblind people.

How do I get in touch with RNZFB deafblind services?

The RNZFB has coordinators based in Auckland, Wellington and Christchurch who provide services for people throughout New Zealand. To ask about services please either call 0800 24 33 33 and press option 1 for general enquiries or contact:

Gloria Campbell ph: (09) 355 6907 or fax: (09) 355 6919.

Is there anyone else I can contact for support?

There is also a consumer/advocacy group, made up of deafblind people and others involved in the lives of deafblind people. This group is:

Deafblind New Zealand (Inc.)
PO Box 109485, Newmarket, Auckland
ph: (09) 524 2940
fax: (09) 524 2941
email: dbnz@ihug.co.nz.