We will resume with the motion on sight loss disability services. I call on Senator Conway to move the motion.
Services for People with Disabilities: Motion
That Seanad Éireann:
-recognises the commitment of the Government to support citizens living with disabilities in our society;
-acknowledges that for the first time in the history of the State we now have a Minister with special responsibility for Disability Issues in Cabinet, ensuring that all Government decisions will have an input from a disability perspective;
-welcomes the decision by the Government to ratify the United Nations Convention on the Rights of Persons with Disabilities to escalate the creation of a fairer and more inclusive society;
-acknowledges the significant increase in spending on disability support services that has taken place in recent years and welcomes the commitment to further increase this in the coming years;
-commends the increase in support and awareness across all Government Departments in the critically important area of sight loss in recent years;
-notes the Government’s awareness of the importance of providing increased supports in the area of sight loss in light of an aging population who will be faced with sight loss difficulties;
-concurs with the Government on the critical importance of early referral to available support services following diagnosis of sight loss to ensure early intervention, which will facilitate as seamless a recalibration and adjustment as is possible, and will lead to early access to necessary supports including mobility training, peer counselling and independent living skills;
-welcomes the provision of funding by the Government through the Acute Hospitals Division to establish the first ever Eye Clinic Liaison Officer (ECLO) across the Ireland East Hospital Group which began in Spring 2019;
-notes that since the establishment of the ECLO support service, the non-governmental organisations working in the area of sight loss have reported a dramatic increase in referrals to the programmes they run in training and adjusting to sight loss in the Dublin region;
-further notes the positive reaction to the establishment of the ECLO service from Consultant Ophthalmologists working in hospitals such as the Mater and Temple Street, who have stated publicly the benefits already experienced by their clients who have been diagnosed with sight loss;
-welcomes the results of a quality assurance exercise carried out with patients who have availed of the services of the ECLO which showed that 78% stated that they were much better informed on how to adjust to their new life challenge;
-calls on the Government:
-to provide the necessary funding to place ECLOs in all Hospital Groups across the State as a top priority;
-to ensure all patients with a diagnosis of sight loss have the same awareness and access to information to avoid a situation where some have and others have not;
-to ensure all children who receive a sight loss diagnosis have equal and fast access to all after-care services, including mobility training and education which is best achieved by emulating what is being done in the Eastern Hospital Group across the country; and
-to indicate a timeline on when it will provide an ECLO in all Irish Hospital groups.
I welcome the Minister of State, Deputy Finian McGrath, to the Chamber. I am delighted taking he is taking this motion because, to be fair to the Government, it is the first time in the history of the State that we have a Minister sitting at the Cabinet table who has specific responsibility for matters to do with disability. Until the appointment of the Minister of State, responsibility for disability matters was all over the place. There was no coherent strategy, proper focus or person accountable for disability matters. The Minister for Health dealt with health matters, the Minister for Education and Skills with educational matters and so forth. Equality was dealt with by the Department of Justice and Equality.
I have been a spokesperson on disability since I was elected to the House in 2011. When motions on disability have been debated the House, they have been taken by a raft of Ministers. We now have a Minister with interdepartmental responsibility who is aligned to the Departments of Justice and Equality, Health, Employment Affairs and Social Protection and so forth. That joined-up thinking in government to give disability due recognition is very important.
Following on from that, the election of Deputy Leo Varadkar as leader of Fine Gael and Taoiseach of our country was another significant milestone. I, Senator John Dolan and others have spoken about the need for Ireland to ratify the UN Convention on the Rights of Persons with Disabilities. In his first news conference as leader of Fine Gael before he became Taoiseach, Deputy Varadkar outlined that that was an absolute priority of Government. Ratification took place within the year. He made it happen. That is key. Ministers who are held accountable, from the Taoiseach down, can make things happen.
We have a long way to go in terms of sight loss in this country. It is still the case that in Ireland four out of every five people who go blind or lose their sight do so unnecessarily. A total of 80% of those who lose their sight would not if there was proper dedicated early intervention. That is a shame on our society and country, and we should stop it.
A high percentage of those who are older have compromised sight. Before I deal with the substantive issue of the motion at hand, I want to say that everybody over the age of 40 needs to have their eyes checked every year or two. People would have a pain in their leg or back checked. If people feel their eyes are getting tired, they will say that they are working too hard and will just take it easy. It is often the rock that people perish on.
When people have their eyes checked and then get a diagnosis, they are left on a waiting list. The sad reality is that the fourth longest waiting list in the country is for ophthalmic matters, including glaucoma, diabetic retinopathy or cataracts. More than 43,000 of our citizens are waiting for treatment. That feeds back to what I said. When people get proper early intervention, their eyesight can be saved and degeneration can be prevented. Time is critical. We often talk about the golden hour for accident and emergency situations, but time is golden when it comes to preventing sight loss.
A further shame on us all is the fact that in excess of 7,000 children are waiting to have their eyes checked and procedures carried out. It is critical that young people are seen as a matter of urgency to prevent sight deterioration. That is something we are not proud of and we need to deal with it urgently.
I acknowledge the presence in the Gallery of Professor David Keegan from the Mater Private Hospital who has made so much happen for people with sight loss in this country. He is a specialist in diabetic retinopathy. Outside of that he is a true advocate for people with sight loss. I also acknowledge Chris White, Kevin Kelly, a former colleague, and others in the Gallery, including my assistant, Aoife Watson, who did a lot of work on the motion.
The purpose of the motion is to deal with what happens when someone is diagnosed with sight loss. The UK has a well-established, well-oiled, well-functioning and proven system where there are eye clinic liaison officers in all of the main hospital groups and facilities where people are diagnosed with sight loss. When a consultant diagnoses any type of eye condition, he or she immediately refers patients to an eye clinic liaison officer who has contacts with various NGOs, including guide dog organisations, the Royal National Institute of Blind People, ChildVision, in the case of a young person, and sports or peer counselling. They help to make it as seamless as possible for people to make the transition to not having full sight. This gives them a quality of life and equips them with the independence we all enjoy, aspire to and deserve as citizens.
We are living in a society that has ratified the UN Convention on the Rights of Persons with Disabilities and respects and espouses the equality of all citizens. When somebody is hit with a diagnosis of sight loss, his or her whole world comes crumbling down. Imagine what it is like for a person to lose all or a lot of his or her sight, having been able to drive, read and navigate the world seamlessly and then to find him or herself in a situation where he or she is no longer able to do that.
A raft of supports are available to help people. The National Council for the Blind is doing pioneering work in terms of creating equality, setting up transport training centres, peer counselling and so on. The number of people who lose their sight but do not realise this type of work is being done is frightening. That is because the link between the medical profession and NGOs is not there. As I said, the system in England works exceptionally well, and the facts and statistics are there to back that up.
I give full credit to people like Professor Keegan and his team and others who have promoted this and campaigned for it for a long time. A new scheme - it is not a pilot scheme - was set up about 12 months ago in Dublin. It involves an eye clinic liaison officer, and I believe the person in the Mater Private Hospital with responsibility for this is in Gallery. The scheme will serve the Royal Victoria Eye and Ear Hospital, Temple Street and a couple of other hospitals. The statistics for the scheme are phenomenal in terms of what the person has achieved. Referrals to NGOs have risen dramatically and the feedback from people who have used the service has been tremendous in terms of their mental health and immediate access to step down supports and services, retraining and so on.
It is shocking that people in Galway, Cork, Limerick and Waterford do not have this facility. The purpose of the motion is very simple. It acknowledges and supports what has been achieved in Dublin, and calls for it to be rolled out to the other hospital groups with eye clinics, such as Cork, where the Leader is from, Waterford, where the Acting Chairman is from, Galway and Limerick, where I am from. Thousands of our citizens are experiencing sight loss in regional areas and they do not have access to the eye clinic liaison officers that people in Dublin do.
I hope that following the debate, the Minister of State, the Department of Health and the Minister for Health, Deputy Harris, will direct all the hospital groups to make the funding available within their budget to appoint an eye clinic liaison officer. Not only is it an essential link between the services and supports provided by NGOs and the medical profession, but it also saves time. In view of the quality of consultants in the country, many of whom I know because I have advocated on the issue for a long time, they spend time advising clients where to go and whom to talk to. It is done on an ad hoc basis. Some do it more than others, while some do not do it at all. For those who do, it would save a great deal of time and expense. It would mean they could see more patients in the knowledge that the patients they have referred to the eye clinic liaison officer would be well cared for and would receive support. The feedback that has come from consultants in Dublin, including from people such as Professor Keegan and his colleagues at the Mater Hospital, is fantastic. People are happier and more confident, and they now see a much brighter future of integration.
I spoke earlier about the 7,000 young people, including children, who are on waiting lists. We are building a children's hospital and spending an awful lot of money on it. I hope there will be an eye clinic liaison officer as a matter of form in the children's hospital. In fact, there should be an eye clinic liaison officer department there. Now is the time to do it and to set it in place. I was tempted to table an amendment to the Children's Health Bill to ensure such a step was taken by enshrining it in legislation but decided I did not have to do so because I do not question the motivation of my colleagues in government, whose hearts are in the right place. By 2021, I would like there to be an eye clinic liaison officer in all the hospital groups where there are clinics for people with sight loss. It is a no-brainer. It works throughout the world and in Dublin, and we should make it work in the rest of Ireland.
I will support this excellent motion. My colleague spoke to the fact that this Government is the first to appoint a Minister of State with specific responsibility for people with disabilities. Although we are discussing eye clinic liaison officers and expanding the pilot scheme set up in the Ireland East hospital group, we must recognise the funding he has allocated for people with other disabilities and the advances made in recent years. I recall that when I was on Kildare County Council in the late 1990s and early 2000s, there was no such thing as dishes on footpaths. When one was crossing at a traffic light, there was no indication for someone who was hard of hearing or sight as to whether he or she could safely cross the road. The awareness that has been raised, and the investment made by this Government and previous Governments, have created a much-improved environment for people with disabilities across the board. It can also be seen in the House, given the number of people with learning and other disabilities who have been provided with employment in the facility, as has happened throughout the country, which must be welcomed.
In view of the fact that a pilot programme has been set up in the east, why can we not extend it to other hospital groups? We would love to have one in Naas hospital, which is associated with Tallaght Hospital and St. James's Hospital. As Senator Conway noted, as we get older we start to lose some of our faculties. I met my brother earlier and, as we passed an optometrist's on our way to a coffee shop, he said he would have to have his eyes checked. If he, in his full faculties, is thinking about that at his age, everyone should do it. I have worked with my colleague and others who have difficulty with eyesight, and my partner does yoga with a woman who has lost vision in one eye, which happened over a period. Our faculties are important and we must take care of them, while the hospital groups need to engage positively with those who are losing them.
I welcome the motion and the opportunity to debate not only the issues my colleague raised but also those related to other disabilities. The Minister of State has the strength to carry the motion through. He might seek to source the necessary funding from within the almost €18 billion budget of the HSE to provide liaison officers in all the hospital groups.
I welcome the Minister of State to the House. I am delighted to support the motion, on which there is much international research. A 2019 study on the impact of eye clinic liaison officers at various ophthalmology clinics in the UK found that eye clinic liaison officers who had a presence at hospital ophthalmology clinics were valuable for streamlining processes within the clinic, not least for providing continuity of care for patients when they are discharged after medical treatment. That is important, given that people are often lost once they are discharged from the clinic and they return home.
Eye clinic liaison officers have also saved staff time at the clinic because they are often responsible for providing emotional and practical support for patients living with sight loss. The study further found that the impact of eye clinic liaison officers may depend on efficient communication within the clinical team, being trusted by other staff and having good knowledge of local and national sight loss support services outside the hospital setting. Eye clinic liaison officers work directly with people with low vision, deteriorating vision, sight loss or impending sight loss and, most important, with their carers. The emotional and practical support is extended to carers and family members of all ages. They provide timely one-to-one support, high-quality information and advice, emotional support and access to other statutory and voluntary services. Eye clinic liaison officers connect people with the practical and emotional support they need to understand their diagnosis, deal with their sight loss and maintain their independence, which is of most importance. They have time to dedicate to people following their appointment in order that they can discuss the impact the condition will have on their life.
In July of this year, the National Council for the Blind Ireland, NCBI, highlighted the success of the eye clinic liaison officer service by celebrating the 100th patient referred to the service in a matter of weeks. Mr. Stephen Farrell, a consultant ophthalmologist at Temple Street hospital, stated:
[T]he ECLO service is a fantastic addition to our Ophthalmology Unit, it is a much needed resource to the children and their parents attending our service. For hospital staff being able to refer to the ECLO has been really reassuring.
The NCBI has stated:
ECLOs act as key point of contact, working closely with medical and nursing staff across Dublin eye clinics. ECLOs aim to bridge the gap between hospital and community based services and education providers like ChildVision ... The ECLO service across all three Dublin hospitals are staffed by two qualified NCBI personnel who have extensive knowledge in meeting and responding to the changing needs of ophthalmic patients.
The NCBI has stated it aims to have an eye clinic liaison officer embedded in all hospital clinics throughout the country by the end of 2021, with the goal of providing early intervention and support at the time of diagnosis. Ms Elaine Crossan, an eye clinic liaison officer at the Mater Hospital, has stated:
[A] diagnosis of a sight condition can be devastating, which can bring enormous practical and emotional consequences and challenges. Many patients report feelings of panic and anxiety. It is my job to act as a key contact point for patients by providing vital information on their eye condition, as well as offering practical and emotional support where and when they need it most. Most importantly, patients now receive the time and support that is essential to them and to their families.
Often as doctors we are very good at diagnosing things, but once there is a label put on it, and a treatment and a prescription handed out, we often forget about the patient and that is wrong. That is the vital role of the eye clinic liaison officer, ECLO, as a support not only to the patient but also to the family.
The ECLOs are helping prevent avoidable sight loss, which is done by talking patients through treatments and helping family members to understand the importance of compliance with their medication. It has to be said that more than 50% of medication prescribed in this country is not taken properly, so reassurance and embedding in people's minds the message with regard to compliance is of vital importance, and that is another role for the ECLO. This role effectively releases clinical staff to focus on more complex cases. Being co-located with the clinical team enables the ECLOs to receive referrals as soon as possible and to advise acute staff on the appropriateness of a referral to a community-based service. In other words, people and patients do not always have to be seen in the hospital sector. Many patients can be transferred to the community-based sector, thus shortening waiting times and preventing people with sight loss having to travel often on public transport or on poor road networks over long distances. The importance of the ECLO in transferring patients from the hospital sector to the community sector cannot be overemphasised.
Given the sharp increase in the number of children with serious visual impairment and blindness, the National Council for the Blind Ireland, NCBI, was keen to further partner with Children's Health Ireland at Temple Street Hospital to support the heightened demand on the system. However, as Senator Conway mentioned, we need to comment on the incredible waiting lists and waiting times for eye care currently. There are more than 60,000 people across the various ophthalmology waiting lists. The outpatient list, as Senator Conway mentioned, is 43,000. The inpatient day case list for ophthalmology procedures is more than 8,000, and the primary care list is more than 15,000. In 2018, the NCBI said that ophthalmology waiting lists had become unmanageable. It said also that more than 75% of sight loss is avoidable and that 40,000 people are missing out on vital, early intervention because waiting lists are out of control.
The Government has committed to eliminating avoidable sight loss, but we have seen absolutely no progress on waiting times in the last year. Delays in access to treatment for conditions like age-related macular degeneration, which is the biggest cause of sight loss in Ireland, can cause irreversible sight loss. We have much work to do with regard to the waiting times. I echo the support for this excellent motion. ECLOs are a vital cog in delivering a modern healthcare system and take many ophthalmology patients out of the hospital setting into the community setting, where most of these services can be provided.
I thank Senator Swanick. I call Senator Victor Boyhan who has eight minutes.
I welcome the Minister of State, Deputy Finian McGrath. He is always very welcome. I thank Senator Conway who has done much work in relation to this matter. I also know of Senator Conway's work with the National Council for the Blind Ireland and other organisations for the visually impaired. I want to start on a positive note. When I was preparing a few notes earlier today, I made contact with the National Treatment Purchase Fund. I was a director of the National Treatment Purchase Fund for two terms, so I understand how it manages its lists and how it prioritises its work and the difficulties around all those issues. I also contacted the National Council for the Blind Ireland and the Irish Guide Dogs for the Blind, of which I was a director for more than 20 years. I am very familiar with this particular niche area of disability. I did not want to come in here and empty out a wheelbarrow of statistics and be critical, because we are where we are. Let us put this in context.
This Government is in power for well over three years. This is not new. Senator Conway articulated very well the issues. As a member of the Government party, he shared with us the fact that there are 43,000 patients on our outpatient list. He then went on to tell the Seanad that there are more than 7,000 children on our waiting lists. That is a travesty and a disgrace. That is something that no Government and no politician can be proud of. It is exceptionally disappointing.
I acknowledge the glossy material on eye clinic liaison officer services, which was sent to a number of colleagues and which I received a few copies of. It is excellent. I am not here to knock Senator Conway, and I think it is good we are speaking about this today, but this has gone for years and it is unacceptable.
I am going to focus on the visually impaired area, because it is one I have a particular grá for and an interest in. The Government and the Senator did not have to bring forward this motion, although it is their prerogative. They could have talked to the Minister about it. However, it gives us an opportunity to talk about the issue.
It is every Member-----
I said it was their prerogative. I re-endorse that. The transcript will show that I said it was their prerogative.
Let us put this in context because that is really important. I want to take this opportunity to welcome the people in the Visitors Gallery, some of whom I know. I also want to welcome the people who are listening to the debate because they are particularly interested in this issue.
We see all the asks, and I agree with every single one of them. I am more interested to hear what the Minister of State has to say in response to the asks. Before I move on, I refer to a pilot scheme with the Irish Guide Dogs for the Blind. The Leader will be very familiar with its work as it is based in Cork on the Model Farm Road. A pilot scheme was initiated with the Department of Education and Skills for children in respect of home schooling and education. It was for children who had no eye sockets in their head and for children who had no eyes. The pilot scheme has been renewed every year. No one has ever appraised that pilot scheme properly. Every year the charity has to make a case for it. Parents have to make a case and lobby for it - parents who have children lying on the ground in their homes who need support and care. No one should have to beg and to agitate constantly for services for their children, not to mention adults who are suffering.
I am happy to share some of the detail with the Minister of State afterwards, or at some other point, to update him on the latest information I have on it. I put a request into the Irish Guide Dogs for the Blind today for the most up-to-date detail on it. It does enormous work.
Someone talked earlier about the emotional aspects of the disability of blindness. We had a great slogan in the Irish Guide Dogs for the Blind that we provide people with independent mobility but with dignity. The dignity is the really important thing. We all want to go about our business in our communities, to go to our church, to go to mass and to go to our doctor and to be active citizens in our community. A guide dog of course gives independence. A long cane also assists people with independence. We want to give people independent mobility and dignity and respect. We also want to put in place - I know the Minister of State is committed to all this - the necessary support services to allow people to get on in a meaningful way with as much independence as they can.
If one is blind, and in particular if one has had sight and has lost it, one needs additional supports. One needs people who can read one's personal mail. One needs people to guide one through various forms and to assist to have one's independence but also the dignity and respect that goes with independence, which is so critical for people who are blind. I am particularly focusing on that today, because Senator Conway has gone into greater detail about the particular issue of sight loss and visual impairment, which is really important.
Of course it makes sense to have eye clinic liaison officers across the health service and to have education about our eye care and our health care. More importantly, I am here today to look at two or three key issues, which are asked for in this motion, and I am going to single out a few asks. The motion calls on the Government to provide necessary funding for places for eye clinic liaison officers in all hospitals. I would like to hear the Minister of State's response to that.
The motion further calls on the Government to ensure all children who receive sight loss diagnosis have equal and fast access to care services, including mobility training and education. Of course the strand of education is so important for people with disabilities, as is access to employment and access to everywhere else.
The motion refers to the funding models and the support for them. There is also the issue of emotional support and support for carers, families and loved ones who are visually impaired or blind people living in their homes. They too need help, care and support. It is a big ask. I thank the Fine Gael Senators for the motion. I do not want to be critical but I would fail if I did not scrutinise and ask some key, hard questions on it. I know that Senator Martin Conway would do likewise. I thank Senator Conway and acknowledge his enormous work in this area. Clearly, he has personal experience of it. The Senator is a strong advocate for visually impaired and blind people. He has worked extensively on this issue. I am aware of the Senator's track record with the National Council for the Blind Ireland, NCBI, and other organisations that advocate for people who are visually impaired.
I support every aspect of the motion but I have a query around how we could reduce those lists fast. How can we comply or seek to comply with the objectives of the motion, which is to deal faster with children in particular, and what will the Minister of State, Deputy Finian McGrath, tell us on that? The issue overlaps education and health, and a whole lot of other community services also. More importantly, how will we get the funding in place to see a dramatic reduction in the number of people who are queuing up? There are 43,000 patients waiting for treatment. It is unacceptable that 7,000 of our children are on such lists. This is on the watch and on the clock of the Government that brought about and set out an honourable challenge to address these issues. It is disappointing that insufficient progress has been made in this regard. I would like to hear from the Minister of State today how he is going to give comfort to the proposers of this motion with regard to resources and the necessary supports to make this happen.
I thank the Minister of State for his personal commitment in the disability sector. It is a specialist area. We have never found the Minister of State wanting in coming to talk to Senators. Honest and straight as he is, the Minister of State has told us what he can and cannot do, and he has explained the limitation on his office. I respect that he is an Independent Minister in the Government and that the Minister of State cannot always get it all his own way, but I look forward to his response.
I welcome the Minister of State, Deputy Finian McGrath, to the House and I commend Senator Conway for the motion before us and for the work he is doing. The naked partisan speech we have just heard needs to be addressed also in the context of the amount of investment being made by the Government in the area of disability services, which is €1.9 billion for this year, notwithstanding some of the commentary and some of the comments. Senator Conway said that 80% of people who become blind, or four out of every five, do so unnecessarily. We need to address the whole issue of general eyesight. It is important that we see the motion proposed by Senator Conway as being about engaging and empowering. Let us have the debate in the context of Sláintecare, which is the policy around the transformation of our health service. We did not arrive just today at the figures for those waiting. I ask Members to cast their minds back to the previous period of ten years of inertia around our health system during which there was no direct investment in eye care. There was piecemeal investment, no strategic vision, no plan, and it was left to organisations such as Irish Guide Dogs for the Blind or the National Council for the Blind Ireland, NCBI. I particularly commend Kevin for being here today. Many of us grew up with the radio programme on a Sunday evening with Jim Sherwin, which shone a light on the huge deficits around visual impairment and the obstacles that had to be overcome, and in particular around the fact that we have in our health system a number of Cinderella areas, one of which is the area we are discussing today. We did not arrive at this point today; it has been arrived at after decades of mismanagement and bad investment.
I commend the Irish Guide Dogs for the Blind organisation in Cork for the work it does. I concur with Senator Boyhan that no organisation should be on a rolling pilot scheme. If that is the case it should not be that way. We need to see dedicated proper management and liaison between the HSE and the service level agreement provided for organisations. Part of the fundamental problem is that we have vested interests in our health service that lead to a malaise and chaos in our health system. As part of Sláintecare I would like to have an honest debate about our health system, which we did not have in this House because Members of this House were excluded from that Oireachtas committee. We need a debate about taking on the vested interests in our health system. Something is fundamentally wrong when the health budget is increased year on year and there are also supplementary budgets for health year on year, yet we have issues with the health system. It is fundamentally wrong. I will stand on that as a former chairman of the health committee. Having been involved with the COPE Foundation for almost 48 years of my life - and having had members of my family working there - I am fully aware of the whole issue of disability. It is not enough to have a Minister of State with responsibility for disability issues; it is about having a co-ordinated strategy where the HSE budget provision is not given at the back-end of the year but is given at the beginning of the year. Where money is being taken from A to plug a gap in B it is not good enough. It is time for honest debate in Ireland about health. This year €1.9 billion has been given for health. Having said that, Senator Conway's motion is particular to the issue of an eye clinic liaison officer service. I commend Professor David Keegan for his work. The points he makes in the booklet on early intervention are very pertinent as are the points about expanding the service.
What we are trying to do here, as referred to by Senators Conway and Boyhan, is about empowerment and engagement to allow people to live independent lives. We think of people like Jim Dennehy in Cork who are exponents of how one can do that, and who became role models for people with disabilities in the city of Cork and the country of Ireland. All of us who live in the community understand the importance of what we debate today because it is about intervention and ensuring that we allow for the conversation and the empowerment. Early intervention is critical. If we are serious about tackling the health needs of our nation in a generic way then - whether it comes under Healthy Ireland or debating it here today, or whatever - it is about early intervention. Senator Conway is asking for eye clinic liaison officers to be provided and rolled out. This is a measure we should all support.
There are deficits by Government, absolutely, but going back to the importance of what I am saying, we need to see an overarching plan that is achievable, accountable and which delivers. There is work being done by the NCBI, the Irish Guide Dogs for the Blind and the ophthalmologists in many parts of the city. We fully accept that the waiting lists are too high but we need to ensure there is early intervention. If Sláintecare or the health system is to work then we have to refocus our priorities, recalibrate our approach, admit that what we are doing is wrong if it is wrong, and restart the process again to change it.
I welcome the opportunity to speak on the motion before us today. I commend all involved and especially Senator Conway who, as Senator Boyhan has said, is a very strong advocate and a powerful role model in the House. However, there also needs to be a real conversation with the HSE about its approach from the ground up. We can blame the Government and Ministers for everything but the fundamentals remain, namely, that it is also about the application of the policy and the application of resourcing that is done at a local level. I would like to see that conversation happening.
I do not for one minute subscribe to the notion that everything is perfect. It is far from it and is anything but. There is, however, an opportunity now. It is part of what the motion is about and is central to the tenet of Sláintecare, which is the importance of the person. If we are serious about allowing people to live independent lives in their communities and providing the supports, which Senator Boyhan rightly pointed to, such as to the person who might need to have a letter read or who needs to have integration further expanded into the community and to be able to live an independent life, then we have an obligation to do that.
I commend Senator Conway for his work. Today's debate is another step on the journey. We also need further conversation and a recalibration of our approach to this issue.
I also commend and congratulate Senator Conway. I thank him for the booklet he has provided, which outlines in very readable terms the motion on the eye clinic liaison officer services to be rolled out across all Irish eye clinics. Senator Conway is a champion for those with disabilities and those who have lost their sight in particular. He made me much more aware of the difficulties involved when we dined together in the dark with a group of people in the Oireachtas. It is a great experience which gives one a different perspective from those with no vision problems.
I view eye clinic liaison officers in the same vein as dementia officers, for which the Oireachtas group on dementia fought and sought funding. We now have several dementia advisers, though we looked for more. Such officers will prevent the clogging up of clinicians', consultants' and medics' time and will allow them to deal with new and complex cases, as well as rapidly reduce the waiting list. This is about a living experience of independence within one's own community and providing those ever-important links to available resources and services. Many people remain ignorant of such resources because it is so difficult to disseminate the information. Liaison officers will make that task much easier, as the experiences in the UK have proven.
As a Member of the real Opposition - that is not a personal dig at Senator Swanick - it is my job to point out the paucity of disability services despite increased demand. The first issue is the withdrawal of the rehabilitative training allowance in the budget, which was quite mean and short-sighted. We discussed that here previously. It should have been paid to school leavers this September in order to enhance independent living. In the grand scheme of things, it would have cost €3.7 million to restore, but its value to the people who received it is priceless. There are also waiting lists for home support services. It cannot be said that the Government is seriously providing for citizens with a disability while many who have already been assessed and qualify are still waiting for services. The waiting list should be cleared.
The motion mentions the Government's ratification of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. While we all welcome this move, it was well known that ratifying the convention would mean actions and resourcing would be needed straight away. We have battled this out on this floor many times. That resourcing has not happened. The optional protocol to the convention should also be signed up to and all the necessary resources provided for its enactment.
We in Sinn Féin welcome this initiative and I again congratulate Senator Conway on bringing this motion forward. I hope this will be extended to all hospital groups. I am also aware that the huge delays in cataract procedures mean many people are needlessly suffering restricted sight. The figures given by my colleague, Senator Boyhan, show that there are currently 43,700 people on the outpatient eye care waiting list. That is an upward trend from the 38,000 who were on the list at the end of 2016. Some 18,700 of these people are waiting more than a year and 13,000 are waiting more than 18 months. Almost 8,700 people were awaiting inpatient eye procedures at the end of August. Much like the long waiting lists for assessments and therapies, the claim that things are improving is diluted for citizens left waiting for such long periods.
In November 2017, the Vincentian Partnership for Social Justice, VPSJ, issued a report showing the much higher cost of living for people with visual impairment and made recommendations for adjustments to be made in welfare receipts, in order to meet the universally accepted definition of an acceptable standard of living. That has been ignored. The blind person's pension is exactly equivalent to the jobseeker's allowance, and like the jobseeker's allowance, has not been increased this year. It has not even increased in line with inflation, which means blind people are even poorer now than they were this time last year. Figures from the 2016 census show that unemployment for people with severe visual impairment is above 75%, and is possibly closer to 86%. That is a disgrace. We need to get people employed and independent. Perhaps eye clinic liaison officers will have some input there, by keeping people in their communities and looking out for valuable and satisfying work.
I refer to the recent decision by the Irish Wheelchair Association to cease operating the Cuisle retreat in County Roscommon, which I also spoke about on the Order of Business. Many families are devastated that a service that means so much to them will potentially disappear, though I hope it will not. This issue also demonstrates how much the voluntary sector makes up for the Government's failure to provide health services. I ask the Minister of State to use his influence to ensure a 12-month stay for the Cuisle centre until a long-term solution can be found. It is ironic that while we are discussing a motion which praises the Government's record on disability rights, wheelchair-dependent citizens are outside the gates of this House asking the Government to step in and save vital services. I urge the Minister of State to ensure the reinstatement of basic rights for those with disabilities and aim for full implementation of the UNCRPD, as well as the optional protocol. I also wish for the advancement of the Disability (Miscellaneous Provisions) Bill 2016, which contains many good amendments addressing the need to make rights that are on paper real for those affected.
I again congratulate Senator Conway. He is to be commended on highlighting the positive impact eye clinic liaison officers have. I wholeheartedly support rolling them out across all Irish hospital eye clinics.
I thank Senators for raising this motion. I particularly thank Senators Conway and Lawlor for proposing and seconding it. I also thank Senators Swanick, Coffey, Boyhan, Buttimer, and Devine for their contributions. I welcome the opportunity to restate this Government's commitment to supporting people with disabilities and their families. I also welcome Professor David Keegan and Mr. Kevin Kelly, who I have known for many years and who has made a massive contribution to the disability sector, particularly to the issue of rights and inclusion for all people with disabilities.
As colleagues know, this Government is committed to providing services and supports for people with disabilities which will empower them to live independent lives, provide greater independence in accessing the services they choose, and enhance their ability to tailor the supports required to meet their needs and plan their lives. The overarching principle governing the planning and delivery of services and supports for adults and children with disabilities is that they should be integrated, as much as possible, with services and supports for the rest of the population.
Ireland has now ratified the United Nations Convention on the Rights of Persons with Disabilities which came into force for Ireland on 19 April 2018. The Government's approach to meeting the terms of the convention is one of sustained and ongoing improvement. Work is continuing on the reforms needed for an optimum level of compliance with the convention's requirements. The Department of Justice and Equality is the designated focal point as it has policy responsibility for the equality aspects of disability matters. The Government's approach to meeting the terms of the UN Convention on the Rights of Persons with Disabilities is one of sustained and ongoing improvement. Work is continuing on the reforms needed for an optimum level of compliance with the convention's requirements. The National Disability Inclusion Strategy, NDIS, 2017-2021 contains a wide range of practical commitments to improve the position of people with disabilities. I have just come from chairing the latest meeting of the steering group on the strategy, which was held in Croke Park this morning.
The strategy provides a mechanism for joined-up working to deliver on Ireland's commitments to implementing the UNCRPD. The NDIS steering group, which oversees and monitors the implementation of the strategy, has an important role in guiding progress in this area. As stated, all of the disability organisations attended this morning. We sat down and hammered out and identified the positives, what was being done and what needed to be done.
The group is committed to carrying out a mid-term review of the strategy by the end of this year. In the context of this review, it is expected that the group will examine how the strategy is aligned with the articles of the convention and how it could be revised and built upon in order to continue progressive realisation of the aims of the convention. The National Disability Authority will also play a critical part in the implementation of the convention. It will carry out a review of progress with respect to the strategy's key indicators in this regard.
Significant year-on-year budgetary increases in the disability sector have positively impacted upon the lived experience of people with disabilities in Ireland. However, I recognise, and I have listened to colleagues here in the Seanad, that daily challenges remain for many people with disabilities and their families. Addressing the needs and rights of people living with a disability and their families is a priority for me and this Government. It is my primary focus, as Minister of State for disability issues. The UNCRPD supports that priority in providing a comprehensive and robust framework for the realisation of rights.
The Department of Health and the HSE have responsibility for a significant number of actions under the strategy. The HSE national service plan is focused on providing supports to people with disabilities and enabling them to maximise their full potential as independently as possible. The plan also provides for a significant level of funding, some €1.9 billion, to deliver essential front-line services for people with a disability. As much as €1.9 billion is being spent, as I speak, on the provision of disability services in 2019. The funding will increase in 2020. These core services span a spectrum of essential interventions that range from clinical therapeutic supports, rehabilitative training and day services, home care supports as well as respite and residential provision.
All funded service providers, including non-clinical service delivery-focused organisations are required to deliver safe and effective services within a defined budget allocation. The HSE must also ensure that it prioritises available resources on the basis of meeting the health and social needs of people with a disability. Our current policy promotes a non-condition specific approach to disability service provision based on the needs of the individual rather than the provision of services based on a specific disability diagnosis. A Programme for a Partnership Government commits this Administration to improving services and increasing supports for people with disabilities. Significant resources have been invested by the health sector in services for people with disabilities over the past number of years.
In terms of health spending, substantial expenditure has been agreed in recent budgets to support increased provision to people with a disability and their families. I am pleased that we have been able to both build upon significant existing resources and obtain additional funding for disability services in 2020. As I speak, the service plan is being finalised. With these additional moneys, the overall budget for disability services in 2020 is in excess of €2 billion. Please note that we will be spending in excess of €2 billion on disability services in the HSE service plan for 2020.
Many colleagues have asked what we are doing with the money. The increased level of funding in 2020 will enable us to continue to provide residential services to over 8,600 people with disabilities at more than 1,240 locations. Upon taking office, one of my priorities was to ensure that all young adults leaving school or training would have access to supports and services that meet their needs at one of the most crucial transition points of their lives. Additional funding of €13 million will provide supports and day services to approximately 1,600 young people with disabilities who will leave school and training next year.
I recognise the critical importance of respite for the loved ones and families of those with a disability. I am pleased to confirm that an additional €5 million, on top of the money given last year to provide for the opening of 12 new respite houses, will be provided in 2020 to build the capacity of our respite services so that we can better respond to the changing needs of service users and their families. Significantly, this funding will provide intensive support packages for children and young people in response to the changing needs of service users and their families. This initiative will include intensive in-home visiting support, planned overnight, specialist behavioural support and extended day-weekend and day-based activities for families.
Sláintecare is centred around providing services and supports at the lowest level of complexity. Finally, an additional amount of funding will be provided in 2020 to support the implementation of the autism plan, which includes a range of measures to improve services for people with autism and their families. Disability services are provided through the HSE to enable each individual with a disability to achieve his or her full potential and maximise independence, including living as independently as possible.
In terms of this debate, persons with disabilities, blind and vision impaired and deaf-blind can access a broad range of acute, primary and community-based services as well as specialist disability services. These services are provided in a variety of community and residential settings in partnership with service users, their families and carers and a range of statutory and non-statutory voluntary and community groups.
Senators may be aware that the NCBI is a not-for-profit charitable organisation that provides support and services nationwide to people experiencing sight loss. The overall aim of NCBI services is to enable people to live an independent life of their choice. NCBI provides services to over 7,000 people every year. The HSE disability services fund, under section 39 of the Health Act, provides a range of centre, domiciliary and community-based services to people who are blind or vision impaired. The funding is governed by a service arrangement, which identifies service delivery provided by the agency in return for the money being provided to them. The service arrangement is reviewed on an annual basis. NCBI received funding of €6.55 million in 2018 from the HSE disability services and is scheduled to receive similar funding in 2019.
In late 2018, on the basis of a proposal by the NCBI, the HSE provided funding through the Ireland East hospital group for a pilot project with the NCBI to put sight loss advisers in place in the Mater Hospital, the Royal Victoria Eye and Ear Hospital, and the Children's Health Ireland at Temple Street University Hospital. Treating clinicians can refer patients to an adviser who can then assist them to access social and community care. The initiative allows the clinician to focus on the medical management while the eye clinic liaison officer can advise them on the practical questions they may have, and refer them to the NCBI for further support and access to additional services. Earlier this year, a pilot service was established. In October 2019, the NCBI and the hospital group prepared a formal evaluation of the project, which has now been submitted to the HSE. While the HSE will take the time to consider the report in all its detail, the high-level findings of the evaluation are very promising. As many as 46% of patients are new referrals to the NCBI services and 78% of all patients received a referral to community-based services.
The HSE primary care eye services review group report was published in June 2017. The report sets out the way forward for a significant number of eye services to be delivered in primary care settings. Supported by the clinical programme and its model of care, the report recommends integrated care provision with hospital ophthalmic services. This will ensure that hospital departments are focused on patients who require more specialist diagnostics or treatments.
Both the HSE primary care eye services review group report and the model of care developed recommend the integration of hospital and community eye care services through integrated eye care teams. The recommendations of the report are being implemented on a phased basis as resources allow. This includes primary care revenue funding and the Sláintecare integration funding 2019.
Before I run out of time, I shall mention a few points that were raised by my colleagues here during the debate. I hope that is okay with the Acting Chairman.
The Minister of State has plenty of time.
Senator Conway has highlighted a very important issue and I thank him for his work in respect of it. The fact is that four out of five people lose their sight and that should not happen. He also raised the issue of waiting lists and I agree with him that we must tackle them. The Senator mentioned the link between the medical profession and NGOs. I agree that we must develop the link.
From the children's hospital, I support the idea of having an eye clinic liaison officer in every hospital. That is something that we push. Not only can we push it among ourselves and at Cabinet level, as far as I am concerned, but I will also push that within the national disability inclusion strategy, which I chair and a meeting of which I just left this morning. We need to see that as well.
Senator Lawlor talked about recognising the improvements and investments. At the same time, of course, we have much work to do.
Senator Swanick also highlighted the great work of the NCBI but also the issues and the gaps in the services, and stated that we need to respond. I will be responding to the issues that the Senator raised in the debate. Senator Boyhan talked about the waiting list and the pilot schemes and made a valuable contribution. The Senator talked about the funding for the eye clinics and highlighted the importance, as Senator Conway did, of the issue of children on waiting lists. That is something we must tackle.
Senator Buttimer talked about the need for strategic planning and I absolutely agree. The Senator also questions the funding issue. This is the debate we have every day in my Department. In 2020, we will hit over €2 billion for disability services. People ask me how, with that level of funding, we do not have enough front-line services and why there are gaps in services. That is an important question that we must ask within the reformed system. When I took over as Minister of State, I set three objectives: to invest in the services; to reform the services; and, above all, to change the mindset to put the person with the disability at the centre of services. I am having difficulties. The process is slow. The system is slow to react. Senator Buttimer makes the point of the co-ordinated strategy and let us have an honest debate. That is important.
Senator Devine raised an important example of another issue, a dementia issue, regarding advisers. The Senator offered a positive and constructive solution. I can assure the Senator that I will ratify the protocol as soon as I have an opportunity.
An issue that came up today that the Senator mentioned was Cuisle and the Irish Wheelchair Association. I am not closing any services. The Irish Wheelchair Association is a section 39 organisation. It got €40 million off us in funding for 2019. I met the Irish Wheelchair Association and the HSE yesterday. They say that people want to go to more inclusive hotels for respite breaks. That is their position. My job is to reflect that view. Of course, I take the point regarding the staffing issue. However, there will be debates with the unions and there will be redeployment. There will be issues like that as well going on. The bottom line is - this is where the mindset comes in - that most of those with a disability using that service say that the new project of hotel respite breaks are popular among people with a disability. People are voting with their feet and they themselves want to go on these breaks. The hotels have been selected and are working closely with them. That is part of the debate. I accept that point.
I am pleased to see that the motion put down by Senators today acknowledges that for the first time in the history of the State, we have a Minister of State with responsibility for disability sitting at Cabinet thus ensuring that all Government decisions will have an input from a disability perspective. I am proud to be Minister of State with responsibility for disabilities. Every Tuesday, I raise disabilities issues all the time. It is not only that the onus and pressure is on me, as Minister of State with responsibility for disabilities, to do my job. My job is to ensure that every Minister around that table, including in this debate the Minister for Health, does something on disability issues. That is why I chair the national disability inclusion group. That gives me an opportunity to have every Department in every few months to ask what it has done on disabilities in the preceding few months. The next time we have a proper national disability inclusion strategy meeting I will raise the issue on behalf of Senator Conway and the Senators.
As Minister of State, I have been inspired by the goals and achievements of the people I have met since my appointment. There are many times when I want to drop that word "disability" because I see many people with ability and that is what the focus should be on. I am more determined than ever to realise the priorities agreed by the Government and continuing to make the changes that are needed.
I thank Senator Conway for bringing forward this motion. I will strongly support it. There are sensible proposals in it. We need to develop it but we need to also ensure when we talk about the United Nations Convention on the Rights of Persons with Disabilities that we make it a reality for all people with disabilities or, as I say, all people with a lot of ability who want to make a massive contribution to Irish society. The way we do it is by us all working together to see if we can get value for money in our €2 billion and can every hospital in this country have eye clinic liaison officers. I thank the Senators for their contributions to this debate.
I thank the cross-section of Members of the House who spoke today. I also thank the many Members who contacted me who could not be here for various reasons but who are very supportive of the motion. That is indicative of the fact that nobody tabled an amendment to this motion which is unusual because amendments are tabled to motions in here on a regular basis. It speaks volumes in terms of the specific issue and what we are trying to achieve here.
Of course, I take on board the criticisms. I articulated them myself but probably not as forcefully as my colleague, Senator Boyhan. It would be remiss of any of us not to acknowledge the challenges and the difficulties. As a matter of fact, every month 329 new people go on waiting lists for eye treatment in this country. The number is growing. While many advancements have been made in areas, particularly in cataracts, with the facility in Nenagh which made sense, I often say to people in Clare that we need to be using hospitals, such as Nenagh and Ennis, to deal with our waiting lists for elective care such as this.
As an aside, I note that there are people outside the gate who are upset about the closing of the facility in Roscommon. In the previous Seanad, in 2013, I had the honour to launch an interesting toolkit on behalf of the National Disability Authority, NDA. The authority produced this toolkit for the tourism sector which advised hotels on how to make their facilities user-friendly for those with a disability. What they needed to do in terms of such matters as wheelchair accessibility was obvious and formed part of the building regulations, but this referred to issues such as background music at a certain level for those who may have difficulty hearing, and lighting at reception areas in hotels that needed to be at a certain level to help the visually impaired. It was a brilliant document, which has informed much of the tourism sector on what it needs to do. These are little things that make a big difference that, unless brought to people's attention, they would not necessarily be aware of. I stated earlier on the Order of Business that many people with disabilities now want choice. They do not want to go back to the same place every year. They want to be able to go to different places and there is a duty on the private sector and the public sector to work together to provide equal access to facilities for everybody, irrespective of what their ability or disability is. It was brought up in the debate because it is a live current issue and I merely wanted to give that perspective.
Going back to the motion, the message that will be delivered from Seanad Éireann is clear. Seanad Éireann sees the benefit of the eye clinic liaison officers and the direct impact that they will have quickly on the lives of the ever-growing number of people who suffer sight loss. That is a powerful message because we are Seanad Éireann, the second House of Parliament in this country. What we say here is listened to and matters. The fact that all colleagues came on board to unanimously support this motion sends a clear message to the Minister of State.
The €70,000 made available through the HSE to provide eye clinic liaison officers in the Mater Hospital, the Eye and Ear Hospital and Temple Street Hospital is only the beginning. The service plan being drawn up at present for 2020 needs to have an immediate impact. We need to see at least two or three more eye clinic liaison officers funded from it, through the hospital groups, to make what will be the adopted policy of Seanad Éireann a reality. There are people who will assist the Minister of State, the Department, the HSE and others in informing how the structure can be put in place. The structures that will be required in Waterford and Cork will probably be choreographed in a different way from the systems and structures that might apply in Donegal and Sligo, but the fundamentals will be the same. It will just possibly have to be tweaked. A full-time officer may not be required in certain areas whereas 1.5 officers will be required in other areas. I welcome the fact the Minister of State will bring it to the stakeholders' meeting, which he chairs very eloquently. The reports I hear back tell me it is making a difference. What we want to do is create an equal society whereby when somebody discovers he or she has a sight loss, society will engage with him or her straight away to provide the necessary supports.
The Minister of State spoke about the Irish Wheelchair Association getting €40 million a year. The NCBI gets €6.5 million and it does massive work. It is the number one agency dealing with sight loss in the country. The Minister of State is getting exceptional value for money for that €6.5 million. This is something that needs to be addressed with regard to core funding for the organisation. In unison, all Members who spoke today, including the Minister of State, acknowledged the phenomenal work done by the organisation on what can be described as a shoestring budget, but that is for another day.
Today, Seanad Éireann is sending a clear message to the citizens of the country that if they suffer sight loss, the State has a responsibility to ensure there is a person or persons who will immediately engage with them to help them come to terms with the diagnosis and provide immediate and instant access to retraining, equipment, education, peer counselling and the suite of various supports that are necessary. This is a very clear message. The Government has done a lot but an enormous amount still needs to be done. On this particular issue the Parliament and the House have sent a message to the Minister of State and I sincerely hope we will see it delivered.
I produced a booklet. It does not happen very often with Private Members' motions in the House but it is good to try to synopsise what we are trying to achieve in an easily readable format. I thank Aoife in my office for the work she did on it and Professor David Keegan for his input. I thank the House for providing time to debate the motion because time in the House is precious and we do not have a lot of it. I thank the Minister of State for his time and presence, the Members and Fine Gael because there is significant demand within the party for Private Members' time. We do not get it very often, and when we do, there is quite a demand for it. I thank them.
I am reminded this is the Upper House and not the second House, so the Senator is putting himself down.
I thank the Acting Chairman for that correction.