Ms Laura English:

I thank Deputies Ó Caoláin and Healy for their support on the issue both at the meeting and in advance of today in taking time to speak to us beforehand in order to get a good grasp of the issue.

I mentioned that a dramatic rise was expected in the number of deaf-blind people in Ireland and elsewhere. There is no Irish context-specific information on that. However, a UK study in 2010 used different data collection methods, including household budgets and some of the population census material to assess the number of people. It estimated that at present, 210 people per 100,000 are affected by deaf-blindness in the UK. With the ageing population the UK expects that number to rise to 343 per 100,000, which is quite significant.

On the other end of the spectrum, due to medical advances a greater number of children are surviving prematurity and from different complications, postnatal and prenatal, and are living but they are living with additional and severe disabilities. A number of the children who were involved in that research were from places that look after children with brain injuries and different multiple disabilities. Part of that multiple disability would be deaf-blindness.

On pathways to care, I mention again the lifecycle process we mentioned at the beginning. Pathways to care need to be accessible at all ages throughout the lifecycle. Dr. Cummings can elaborate on that based on her professional experience. Access to information is a huge issue for people who are deaf-blind. HSE leaflets in doctors' surgeries are not accessible to members of the deaf community who use sign language. Their first language is Irish sign language and to understand and really grasp all the services available to them in a second language is difficult. For people who are blind, material is often not available in Braille. The deaf-blind community in general have difficulty with access to information, which needs to be addressed to ensure they are aware of the different services available to them and the different pathways to care they can use and the routes they can access.

In terms of data collection, I have quoted figures from the national census from 2011. As Ms Brill has said, we would like to see a specific box to tick on the census that would indicate deaf-blind as opposed to ticking deafness and blindness. It should be clear that dual sensory loss is a distinct disability. We would also like to see that reflected in the national disability database, physical and sensory. There are issues on that. I have asked them to give us figures on how many people on the national physical sensory disability database at the moment experience a combination of vision and hearing loss. Even though it has been established since 2002, the numbers were below 500, which is quite stark considering that there are more than 10,000 people on the national census. The Health Research Board that runs it would advocate for people over the age of 65 to be included in that data collection which is not the case currently.

The register is done by voluntary participation. Perhaps if that were rolled out more through community voluntary organisations and the voluntary participation was stepped up a gear it might have the resources to collect more accurate information on the number of people who are deafblind in Ireland.

We were asked about what technology might be available. I attended the international Acquired deaf-blindness Network Conference held in Belfast last year. I saw there a number of deaf-blind people from across the world using different forms of communication which are not as readily accessible in Ireland. A number of people use tactile communication and sign language. If they had already acquired sign language earlier in life and then lost their sight they would use sign language into the hand. There are a number of different methods. Some would include each finger being a vowel, a, e, i, o and u, and the consonants would be in the palm. A speech could be spelled out to them in their hand. At the moment plenty of sign language classes are available in the country but not many people can help a deaf person to convert that conventional sign language into a tactile hands-on communications system. We would also like to work on that.

Last year one of our events was attended by the only deaf-blind priest in the world. He communicates through a Braille system that works through his iPhone. He will enter a message via Braille, send it off in an e-mail and will receive it back on his Braille machine. There is also a Lorm glove, which works on the concept of the manual alphabet on one's palm, but somebody can send one a text message and wearing the glove it will vibrate in certain parts of one's palm. Those kinds of technological devices are available and information on them can be found through Google. However, there is no information for deaf-blind people to find those kinds of devices in an Irish context.

I ask Dr. Cummings to elaborate on the pathways to care.