Joint Oireachtas Committee on Health and Children
28/05/2015
Recognising Deafblindness as a Distinct Disability
Laura English, the Anne Sullivan Centre:
A dhaoine Uaisle, I am honoured to be given the opportunity to address you today on behalf of
people who are Deafblind in Ireland.
For the purpose of clarity please note that according to the widely accepted definition across
Europe, a person is regarded as Deafblind if their combination of vision and hearing loss causes
difficulty with access to information, communication and mobility. The disability is also referred to as
dual sensory impairment or dual sensory loss and these alternative terms may be used throughout
the course of this meeting.
Hearing and Vision impairments create barriers to communication that can isolate people and
jeopardise independence and well-being. When vision and hearing losses combine a person’s ability
to overcome these barriers becomes even further limited because one sense cannot adequately
compensate for the loss of the other.
Deafblindness is not therefore deafness plus blindness rather it is a separate and unique disability
that affects overall development, socialisation and communication. One plus one equals three.
The Anne Sullivan Centre was established in the late 1980s by a group of pioneering parents whose
children were born Deaf and Blind as a result of Congenital Rubella Syndrome. Thankfully, the State’s
commitment to ensuring the availability of the MMR vaccine has almost eliminated incidents of
Rubella Syndrome in Ireland.
Currently however, there are more than 80 different causes of Deafblindness, including hereditary
and chromosomal conditions, pre-natal congenital complications, post-natal non-congenital
complications and older age.
Deafblindness is a growing concern. Research has shown that the proportion of the population who
experience a combination of vision and hearing loss is expected to rise dramatically as a result of the
ageing demographic and increased survival rate for infants with severe disabilities.
In July of last year, I conducted research into Deafblindness in Ireland with the assistance of a
number of cooperating organisations.
As part of the investigation, I requested a cross-tabulation of data, from the Central Statistics Office.
It revealed that 1,749 people reported having a combination of Blindness or serious vision
impairment and Deafness or a serious hearing impairment in the 2011 Census. An additional 8,616
reported dual sensory impairment with one or more additional disabilities- bringing the total
number of those affected to 10,365.
In 2001, the UK introduced Care and Support for Deafblind Adults and Children- Policy Guidance for
all local authorities. It recognised Deafblindness as a distinct disability and required each local
authority to record all people who are Deafblind in their catchment area. It also instructed local
authorities to appoint a senior level member of staff to take overall responsibility for ensuring that
people who are Deafblind receive an assessment of need and have access to appropriate services.
Joint Oireachtas Committee on Health and Children
28/05/2015
Recognising Deafblindness as a Distinct Disability
Three years later, Irish MEP’s joined their European counterparts in signing Written Declaration
2004/1- urging all members to recognise Deafblindness as a distinct disability and acknowledge that
having a distinct disability, Deafblind people need specific support provided by people with specialist
knowledge.
This is a sentiment echoed by the UN Convention on the rights of Person’s with disabilities 2006,
which was adopted in full just last week by the European Parliament. It makes a clear distinction, in
Article 24 between people who are Deaf, people who are Blind and people who are Deafblind.
Towards 2016, outlines a new and innovative approach to social policy. It focuses on the adoption of
the life cycle approach which places the individual at the centre of policy development and delivery,
at key stages in their life.
The New Directions Policy and the Congregated Settings Bill also promote a person-centred
approach to disability services which emphasises the need to ensure people with disabilities are
supported to be active members of their communities.
Despite this, less than half of the 100 Deafblind people who participated in survey research,
reported that they were engaged with support services. Those who were receiving services were
predominately adults in full-time residential care, and children and young people in mainstream or
special education.
Working age and older age people living in the community or with the support of family were
undoubtedly underrepresented because of the difficulties associated with identification. Those that
did participate in the research or who have since contacted our Outreach service for advice, report
having limited, if any access to services.
Recognition of Deafblindness as a distinct disability is essential throughout the life cycle. Children
with a combination of vision and hearing loss require specialist education provided by people with
expert knowledge of the disability.
Opportunities for training, education and employment need to be made available to people who are
Deafblind- based on their unique dual sensory disability as opposed to the severity of a primary
disability as is currently the case.
People who acquire Deafblindness later in life need clearly defined Pathways to Care that allow
them to manage and adjust to their loss of vision and hearing and continue to actively participate in
society.
In the vast majority of cases the over 10,000 strong Deafblind population in Ireland, rely entirely on
services for the Deaf and the Blind.
In effect, this means that people who are Deafblind are divided into parts for support and assistance,
without a dedicated professional to coordinate the diverse range of services currently available.
Difficulties with access to information further limit a Deafblind person’s ability to access services. In
respect of this, I would like to commend and sincerely thank the Dáil Clerk, and his colleagues in the
Joint Oireachtas Committee on Health and Children
28/05/2015
Recognising Deafblindness as a Distinct Disability
broadcasting unit, who worked tirelessly in the last number of weeks to ensure that today’s
proceedings, were accessible to members of the Deafblind community.
Certainly, the lengths they were required to go to to ensure that people who are Deafblind were
afforded the same opportunity to access parliamentary proceedings as other citizens of the state,
who do not have a disability, are indicative of the challenges faced by the group.
It should not go unmentioned that you are all involved in making history today – as members of a
parliamentary committee whose questions and comments will be accessible to the Deaf community
through sign language for the first time in the history of the state.
As advocates for, and members of the Deafblind community we are urging you to recognise
Deafblindness as a distinct disability in Ireland.
In addition, we are asking Government to acknowledge the need for dedicated professionals to be
appointed to support those affected, to collect accurate data on the number of people who are
Deafblind and to coordinate the services that are currently available.
If a person is profoundly Deaf and totally blind, his or her experience of the world extends
only as far as the fingertips can reach. Such people are effectively alone if no one is touching
them. To them, you are invisible. A dhaoine Uaisle, we would like a commitment from you
today, that to you, these people are not invisible.
Míle buíochas díobh.