Ms Laura English:

A dhaoine uaisle, I am honoured to be given the opportunity to address the committee today on behalf of people who are deafblind in Ireland. For the purpose of clarity, according to the widely accepted definition across Europe, a person is regarded as deafblind if his or her 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. I am thankful that the State's commitment to ensuring the availability of the MMR vaccine has almost eliminated the incidence of rubella syndrome in Ireland. Currently, however, there are more than 80 different causes of deafblindness, including hereditary and chromosomal conditions, prenatal congenital complications, postnatal 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 co-operating organisations. As part of the investigation, I requested a cross-tabulation of data from the Central Statistics Office. The data 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 United Kingdom introduced for all local authorities Care and Support for Deafblind Adults and Children Policy Guidance. 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. Three years later, Irish MEPs 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 Persons 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 his or her life. The new directions policy and the congregated settings Bill also promote a person-centred approach to disability services that emphasises the need to ensure people with disabilities are supported to be active members of their communities. Despite this, fewer than half of the 100 deafblind people who participated in survey research with me reported they were engaged with support services. Those who were receiving services were predominately adults in full-time residential care who had additional disabilities, 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 under-represented because of the difficulties associated with identification. Those who did participate in the research or who have since contacted our outreach service for support 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 participate actively in society. The majority of 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 co-ordinate the diverse range of services currently available. Difficulties with access to information further limit a deafblind person's ability to access services.

In this regard, I commend and sincerely thank the Clerk Assistant of the Dáil and his colleagues in the broadcasting unit who worked tirelessly in recent weeks to ensure that today's proceedings were accessible to members of the deafblind community. The lengths to which they have been required to go to ensure that people who are deafblind are 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 that the community faces. It should not go unmentioned that the Members present are 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 and members of the deafblind community, we urge the committee to recognise deafblindness as a distinct disability in Ireland. We ask the 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 co-ordinate 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 fingertips can reach. Such people are effectively alone if no one is touching them. To them, the members are invisible. A dhaoine uaisle, we would like a commitment from members today that, to them, these people are not invisible. Míle buíochas díobh.