Hungarian Deafblind Association
Siketvakok Országos Egyesülete
Since 1994, the Hungarian Deafblind Association has been working to increase the quality of life for deafblind people in Hungary by representing their interests through advocacy and other service provisions. We took many steps, large and small, in the last twenty years towards meeting these goals. We are pleased that new services have been founded and new ways of support have appeared. We are confident to say that the opportunities for the deafblind have improved significantly relative to the situation twenty years ago.
The Hungarian Deafblind Association is the only organization in our country that provides rehabilitation, communication support and advocacy for deafblind people.
The Association has three divisions of responsibility:
• An Advocacy and Information Office responsible for Advocacy.
• A Communication Support Service responsible for the Interpreter-guide service and the dissemination of special communication methods developed for deafblind people.
• An Elementary and Vocational Rehabilitation Service Division
At the moment, the association is in contact with approximately 400 people living with deafblindness.
The Hungarian Deafblind Association, along with other disability groups, started talks in 2009 with the (former) national government about the need to identify more precisely the number of people living with different types of disabilities. These successful talks led the Central Statistical Office which is responsible for the national census to include deafblindess on the list of distinct disabilities identified in the 2011 census.
The 2011 census data was summarized into the following two categories related to deafblindness:
1. People defining themselves as living with deafblindness: 3,262 persons
2. People who did not define themselves as living with deafblindness, but as living with both blindess/visual impairment and with hearing loss/deafness: 12,685 persons
The two diagrams below depict the distribution according to age. Please note that the small numbers in the lower age groups are probably due to the fact that one cannot be diagnosed with deafblindness but might receive early care according to major type of disability.
Report into Deafblindness published in Ireland
Until recently, no large- scale research had ever been conducted into Deafblindness in Ireland. Estimates of the number of people affected by the disability were not available and very little was known about the situation of people living with dual sensory loss in the Irish context. In October 2013, the Anne Sullivan Centre1, in association with Deafblind Ireland2, attempted to change this.
To begin with, statistical information from the 2011 National Census3 was reviewed. Question 16 of the Census was a seven-part question aimed at gathering information on the prevalence of disability in Ireland and proved an invaluable resource. The data collected indicated that there were 51,718 people with ‘Blindness or a serious vision impairment’ and 92,060 people with ‘Deafness or a serious hearing impairment’ living in Ireland.
In November 2013, a request was sent from the Anne Sullivan Centre to the Central Statistics Office (CSO), for a special cross-tabulation of these data to ascertain the number of people who had indicated they were both hearing and vision impaired. For the purpose of the analysis, Deafblind was defined by the CSO as, “a combination of Blindness or a serious vision Impairment and Deafness or a serious hearing Impairment”. Further correspondence with the CSO provided an additional breakdown of the number of people who were Deafblind in specific age categories in each county.
Summary of Results
The results of the Special cross tabulation indicated that, based on 2011 statistics:
1,749 people are Deafblind in Ireland (CSO, 2013).
1050 of these are over the age of 65 and 699 are under the age of 65.
518 of these lived in Dublin, our capital city.
This figure is equivalent to approximately 57 people in every 100,000
In an effort to discover more, a National Registry of people who are Deafblind was established. Information for the registry was gathered using short surveys mailed to people identified as having a combination of vision and hearing loss, by both the Anne Sullivan Centre and other cooperating organisations nationwide including the National Council for the Blind Ireland (NCBI)4, DeafHear5 and other intellectual disability services.
In total, 103 surveys were returned for analysis by April 2014. They indicated that:
• At least one third of the Deafblind population in Ireland are over the age of 65, representing the largest diagnostic group within the Deafblind population
• Age Related Deafblindness, Usher Syndrome, CHARGE Syndrome and Congenital Rubella Syndrome are the leading causes of Deafblindness in Ireland.
• Almost 20% of the Deafblind population have a diagnosis of Usher Syndrome. Of these less than one quarter are engaged with a service provider.
• 90% of Deafblind children and young adults have one or more additional disabilities.
• Almost two-thirds of people who are Deafblind live with family. Fewer than 15% live alone and almost 20% live in a residential care facility.
• 55% of people who are Deafblind are not in receipt of any services6.
While further consultation with people who are Deafblind and their families is needed to fully assess the situation, the following recommendations have been proposed to advance the rights of people who are Deafblind, based on the findings of this report.
• A campaign for Awareness and Enabling Legislation that includes, but is not limited to, lobbying for Official Recognition of Deafblindness as a separate and unique disability in the Irish context and the adoption of the European Union’s Written Declaration 1/2004.
• The establishment of a strong support network of people who are Deafblind, their families and the professionals working with them to advocate for the group at local and national level
• The development of Deafblind Specific Services that meet the individual needs of the diverse population of people who are Deafblind
• Further research into the area of Deafblindness which includes greater consultation with people who are Deafblind and their families to provide the information necessary to plan and develop appropriate services for the growing Deafblind population
The Anne Sullivan Centre is using the publication of the report to raise awareness of Deafblindness in Ireland and to campaign for the improvement of services. We hope that the National Registry will continue to grow in numbers and will provide the foundation for a strong Deafblind community in Ireland.
Finally, we would like to take this opportunity to thank all of the Deafblind International members who contributed to the research – either directly by responding to an email and offering advice or indirectly by being a guiding light for research into Deafblindness. We hope that you find the results both interesting and informative. If anyone would like a copy of the report or have any questions, you can contact the author of the report
Laura English (firstname.lastname@example.org)
1 www.annesullivan.ie. The Anne Sullivan Centre is a small corporate member of DbI.
2 www.deafblindireland.org. Deafblind Ireland is a small corporate member of DbI.
4 https://www.ncbi.ie. NCBI, the national sight loss agency, is a not for profit charitable organisation which provides
support and services nationwide to people experiencing sight loss.
5 https://wwwdeafhear.ie. DeafHear has a national network of resource centres providing a range of accessible services to Deaf and Hard of Hearing people and their families and is also actively involved in advocating and lobbying for improved services and new developments
6 People who participated in the research were asked if they had access to a) Residential Care, b) Respite Care, c) Day Service,
d) Visiting teacher for the Deaf/ HI or Blind VI, e) Personal Assistant, f) Special Education School , g) Other –
55% did not receive any of the above or indicate they received a service from ‘other’.