Tuesday, 2 February 2016
The Minister of State is very welcome. Last week, on the Order of Business, I raised the case of Carol Brill who has Usher syndrome. She has a devastating rare genetic disease that causes the gradual deterioration of hearing and sight for which there is no cure or treatment at present. The Leader proposed and suggested that it would be more appropriate for me to raise the matter as a Commencement matter this week.
Last year, at a meeting of the Oireachtas Joint Committee on Health and Children, Carol spoke and pleaded passionately for help for people who have the dual-sensory loss of sight and hearing. She spoke about the urgency of recognising deaf-blindness as a unique disability. In 2015, Carol was formally diagnosed with Usher syndrome type 2a. The diagnosis was only possible through the relationships that Carol had forged with many of the international researchers working in the field. She did all of this with drive and energy, despite being handicapped with deteriorating sight and hearing. She has to wear very high powered hearing aids but she is not entitled to get them on a medical card. She is 45 years of age and it is very difficult for her to get a job with her unique problem.
I wish to point out that there is no dedicated entry on the national physical and sensory disability database to record her needs and that of people like her. Such people should have their needs recorded on the database.There is not a single case worker to look after her needs and the needs of other people with her unique disability. I am pleading with the Minister of State in the dying days of this Government and, please God, when she goes forward again herself in the next Government, that this issue be dealt with and that there be compassion for the people who have this rare syndrome. The horror of going deaf and blind simultaneously just does not bear thinking about - everything going dark. Deafness and blindness, generally speaking, are unique to people as they get older but this affects young people. Carol herself is 45 years of age. What is keeping her spirits going is her daughter of eight, Sarah. She conquered depression when her marriage broke up and her baby son died. She has come through so much and is an inspiring person. I am here today pleading her case.
I thank the Senator both for her patience and for raising the issue. I did listen to the evidence given. One could not but be touched by what we heard. I would like to thank Senator White for raising the issue on the Commencement of the Seanad today.
In addressing the specifics of the question raised in the Commencement matter, the Minister for Health does not classify or recognise specific medical illnesses or conditions as a disability. There are a number of definitions of disability that are used for particular purposes, for example, the Disability Act, the Education for Persons with Special Needs Act, the Equal Status Act, the Employment Equality Acts and the census. In addition, there are definitions of disability in use for determining qualifying criteria for income supports such as domiciliary care allowance and disability allowance. These definitions describe disability in terms of an individual’s functional ability in his or her environment, rather than a medical diagnosis or condition. The Government currently provides funding of approximately €1.57 billion to the disability services programme as described in the HSE’s national plan for 2016.
Persons with disabilities, including those who are blind, those who are deaf, and those who are both deaf and blind can access the broad range of acute hospital, general practitioner, primary care and community-based services, as well as specialist disability services. I would like to outline for the Seanad the specialist disability services provided for people who are deaf or hard of hearing and for those who are blind or vision-impaired. Services for blind and vision-impaired people are provided as part of the HSE’s physical and sensory disability services and are delivered directly and in partnership with a number of voluntary service providers, including the National Council for the Blind of Ireland, the Irish Guide Dogs for the Blind, the National Association of Housing for the Visually Impaired, ChildVision and Fighting Blindness. The HSE community audiology services provide assessment and rehabilitation for medical card holders and, separately, for children. The audiology services provided include audiological assessment, hearing aid fitting and management advice, and advice on the use of assistive listening devices. In addition, the service provides onward referral to acute hospital specialist services, the cochlear implant programme, speech and language therapy or other services as appropriate.
There are a number of voluntary organisations providing specialist disability services to people who are deaf or hard of hearing including DeafHear, the Catholic Institute for Deaf People, the Irish Hard of Hearing Association and the Irish Deaf Society. DeafHear is the largest provider of such services and receives over €4 million in funding from the HSE. The services offered by these organisations include family support services, assistive technology and assistive listening devices, communication therapy and lip-reading classes, sign language classes, and a mental health and deafness service. These organisations receive funding from the HSE.
Along with the broad range of acute hospital services, general practitioner and community care services and the specialist services outlined above, the HSE also supports the Anne Sullivan Foundation for Deafblind. The foundation is funded by the HSE under section 39 of the Health Act 2004 and provides residential services for people who are deaf-blind. The foundation receives over €1.9 million from the HSE for the provision of specialist services to people who are deaf-blind.The foundation received over €1.9 million from the HSE for the provision of specialist services to people who are deaf-blind. People who are deaf-blind receive a wide range of health and professional social care services from the HSE. They attend general practitioners and specialists in acute hospitals to provide for their clinical needs. In addition, specialist services and supports are provided by the HSE and a range of agencies and organisations.
I know Senator White will understand this, because she has heard it before. Not a month goes by when we are not approached and asked to define a different area differently or in a specific way. Most of us would know off the top of our heads what these areas are. It is our intention to provide a service with a broad range. If Niall Keane from DeafHear were sitting in the Gallery today - I am sure he will be listening in another way - I imagine he would agree. I have always believed that deafness is different. It is isolating and it keeps people separate from the rest of the community. However, we must ensure that the services provided have a broad range and that people need not fit into a particular category to access a given service. That is important and it has always been my belief that this is the best approach when it comes to disability.
I am afraid the Minister of State and I misunderstand one another. Fewer than 50 people benefitted from the services of the Anne Sullivan Centre, which is a primary residential care centre. I am referring to people who are living in society. The 2011 census gave us a figure of 10,365 for people who indicated that they have a combination of the disabilities. The key is the combination of one or more of the disabilities of hearing difficulty and sight loss. It is a question of suffering from the conditions simultaneously. It is not a question of hearing loss or blindness, it is a matter of when a person has both. That is the key and that is what we are discussing today.
There is no register for deaf-blind people, yet there is a register for blind people and for deaf people. That is the issue. There is no register for people who are deaf-blind or who have Usher syndrome. This issue has fallen through the cracks. Please God, this is my second last day in the Seanad and I will not be back here again, but I will fight my cause in the outside world on this matter. It is a serious matter that deaf-blindness is not recognised on the database.
There is a register of disabilities, as the Senator has rightly pointed out. It may simply be a question of altering how the question is answered or indicating that there might be a position to indicate that both conditions exist simultaneously. However, I had thought that was not the central point.
It is part of what we need to know, because information is key in respect of how we do this exactly. However, I would have thought that it is about recognition in terms of a particular disability being treated in a different way. I may misunderstand the point and, if I do, then I apologise, but most definitely my understanding was that it was about ensuring that it be recognised as a separate and distinct disability.