Oireachtas Joint and Select Committees
Friday, 17 July 2020
Special Committee on Covid-19 Response
Impact of Covid-19: People with Disabilities
I advise our guests that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. If they are directed by the committee to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.
I welcome our witnesses, who are in committee room 2. From the Irish Human Rights and Equality Commission, I welcome Dr. Frank Conaty, acting chief commissioner, and Professor Caroline Fennell, who taught me the law of evidence some time ago and who is a commission member. From the Disability Federation of Ireland, DFI, I welcome Mr. John Dolan, CEO, and Dr. Joanne McCarthy, head of policy, research and advocacy. From Inclusion Ireland, I welcome Mr. Enda Egan, CEO, and Mr. Mark O’Connor, community engagement manager. I invite Mr. Dolan to make his opening remarks and ask that he confine them to five minutes as his statement was circulated to members in advance. We want to leave as much time as possible for questions and answers.
Mr. John Dolan:
The DFI has made two submissions, which I note in my opening statement. DFI is about making Ireland a fairer place for people with disabilities. We work to create an Ireland where everyone can thrive and where everyone is equally valued. We do this by supporting people with disabilities and strengthening the disability movement. One key thing that we will always say is that disability is a societal issue. DFI works with Government across all social and economic strands and interests of society.
There are executive summaries of both submissions but I will highlight a couple of points. I refer to the unanimous ratification of the UN Convention on the Rights of Persons with Disabilities by the Dáil in early 2018, along with the commitment in this new programme for Government to establish a joint Oireachtas committee to assist in monitoring and implementing the provisions of the convention.
The first of these, the ratification, simply commits Ireland to getting on with the work of implementation. The second is critical and it is important for members to understand that it is a unique instrument. Maybe there is one somewhere, but I do not know of any other parliament, certainly in the EU, that has such an instrument available to it. The UN special rapporteur on the rights of persons with disabilities recently stated that every state's recovery plan must have improvement and protection of the lives of people with disabilities stitched into it and must ensure that people with disabilities can have a life, rather than just being cocooned or put in a parking space while we deal with Covid-19.
Services and supports for people with disabilities were in a bad state before Covid-19 struck. Despite the full recovery of the economy, the capacity to provide services and supports was going in the wrong direction before Covid-19. Poverty was decreasing generally but remained very high among people with disabilities. Services were already facing deficits of more than €40 million, and this year's HSE service plan included a 1% cut which was described as an efficiency measure. All of that was before Covid-19. The funding crisis has been exacerbated. Organisations have faced huge losses in fundraising and earned income due to Covid-19. Many organisations rely on fundraising. If the cost of delivering services, including additional costs caused by Covid-19, is not fully funded, people with disabilities and their families will continue to bear them as services will be unable to survive.
The demographic trend is going against us. The most potent example of that this week was the Irish Fiscal Advisory Council's findings on dependency ratios. People are living longer, including people with disabilities. Since Covid-19 there have been cuts to services such as personal assistants, schools, day programmes, etc. Therapies and procedures have been stopped. The supports and incomes of people with disabilities, which were always minimal and often precarious, have become intolerably so in the last four months. Families who were always under too much pressure, as members all know, cannot see how they can continue. As society reopens, we must consider a range of issues facing people with disabilities. Support is required to allow those who are medically vulnerable to continue to cocoon. This includes people with a range of conditions such as cystic fibrosis, muscular dystrophy and many others. As workplaces reopen, those individuals are no longer entitled to the Covid-19 pandemic unemployment payment. The advice of the Department of Employment Affairs and Social Protection is that they should access illness benefit but many will not qualify as they are able to work and were in work. People who are categorised as high-risk if they contract Covid-19 must be economically supported in continuing to follow the public health advice.
We also need to reflect on what we have learned so far and be prepared for a second wave of Covid-19. The lockdown took a heavy toll on the mental and physical health of people with disabilities and their family carers. Resilience will not be as high if services are withdrawn. We must also plan to ensure that essential services such as respite, home support and personal assistance are delivered safely. We cannot just cocoon and isolate people. They must be helped to get on with their lives. The fundamentals of the economy are strong. Our capacity to borrow is not in doubt. We must invest now to minimise the damage to the lives and prospects of people with disabilities or two things will happen - people's lives and life years will be diminished and any later investment will only show modest returns.
While health and social protection are critical areas, the same is true for the work of other Departments. The UN Convention on the Rights of Persons with Disabilities provides the agreed objectives. That was accepted unanimously by the Dáil and the Government in the previous term. Its implementation must be at the heart of Ireland's Covid-19 recovery plan.
In this regard it would be very useful for the committee to invite the Minister with responsibility for disability to appear before it to explain how the Government intends to stitch the lives and futures of people with disabilities and their families into Ireland's national recovery plan from Covid.
I offer my thanks and appreciation to my colleagues, Dr. Joanne McCarthy and Ms Riona Morris, who did all the legwork.
I call Mr. Egan to make his opening remarks and I ask him also to confine them to five minutes. I have just learned that the Seanad Chamber does not have clock whereas there is a clock in the committee room. I ask Mr. Egan to adhere to the five minutes.
Mr. Enda Egan:
I thank the Chairman and committee for giving us the invitation to attend this morning. Our submission is broadly based on a recent survey we carried out on the closure of day services and the impact on people with intellectual disabilities and their families. Before I get into that, I wish to point out that Inclusion Ireland is the national organisation representing 66,000 people in Ireland with an intellectual disability and their families. We work on the basis of a human rights platform and we use the UN Convention on the Rights of Persons with Disabilities as the axis on which we work.
A number of key points for consideration arise from our survey. Some 54% of respondents felt they had little or no contact from their service provider during the period of the Covid-19 pandemic. Regarding the direct impact on people, mental health was the key issue that emerged from the survey, with 38% of families saying they had seen a change in the behaviour of their loved one with an intellectual disability. This behaviour could manifest itself in many ways from an anger outburst to the person retracting. Some 33% of people felt that anxiety had become a major issue for them, and they were far more anxious. Unfortunately, and sadly, 56% of people with an intellectual disability felt that loneliness had become a significant issue for them and felt loneliness was impacting on how they felt and on their general health.
On mental health, it is very important that the new Government policy, Share the Vision, is fully implemented for people with disabilities across the disability spectrum and that they have equal access to such services in their community at their doorstep. This access also involves ensuring adequate communication protocols are in place for people with sight impairment, hearing impairment and speech impairment. It is important that, as stated in Share the Vision, speech and language therapists become a core part of the teams operating at local level. That is very important from an intellectual disability point of view.
In respect of the reopening of services, as the previous speaker pointed out, families at this point are at the absolute edge of their ability to cope with what has transpired during the Covid pandemic period thus far. People are emotionally, mentally and physically at the end of their capacity to cope. I feel another pandemic is about to hit us, which is family carer burnout. That will lead to a revolving door of emergency cases. From speaking to some people, there is evidence of this happening as we speak.
Last week, the HSE issued new guidelines in respect of the reopening of services. We have concerns about some of those guidelines. The key point here is that service providers must move as quickly as possible to reopen services. They must do their absolute utmost and not use the guidelines as a stumbling block for the reopening of services.
In the survey, families indicated that some service providers had done very well and some service providers could have done better with the level of resources they have. The reopening of day services is paramount.
Another issue directly related to the Covid-19 pandemic is congregated settings. Based on figures from the beginning of this year, 1,953 people living in congregated settings are not there by choice. It is extremely important that we learn from what has happened during the Covid pandemic. Observance of the rights of people with intellectual disabilities living in congregated settings leaves a lot to be desired. They do not witness the full implementation of human rights. As the previous speaker stated, members have an opportunity to bring the Minister before this committee. There are four Ministers with a brief in the area of disability issues. All four should be brought before the committee to give their views on how they will ensure disability issues do not fall off the radar across the programme for Government. While there are good elements in the programme for Government, we need to ensure they are front-loaded.
I invite Dr. Conaty, acting chief commissioner of the Irish Human Rights and Equality Commission, to make his introductory remarks. I ask him to confine his contribution to five minutes to allow time for questions and answers.
Dr. Frank Conaty:
I thank the Chairman and members of the committee for the invitation to appear with my colleague, Professor Caroline Fennell. The establishment of this committee was a specific recommendation of the Irish Human Rights and Equality Commission to ensure proper democratic oversight of decision-making during the pandemic. It is with particular respect to this work that we address the committee today.
The Irish Human Rights and Equality Commission is Ireland's independent, national human rights institution and national equality body. It was established as a statutory body in 2014 and is accountable directly to the Houses of the Oireachtas. The commission is also the independent monitoring mechanism designated for Ireland under the UN Convention on the Rights of Persons with Disabilities. We are supported in that work by a disability advisory committee composed of a diverse group of people with lived experience of disability.
In addressing the committee today the commission is conscious of our mandate to protect and promote human rights and equality in Ireland in what are truly exceptional times. We are also conscious of members' role as legislators and public representatives to do the same. The committee has heard and will hear from other witnesses today about the direct experiences of people with disabilities during the pandemic and the impact on services and the users of services. We will reiterate aspects that are highlighted by them.
The Irish Human Rights and Equality Commission emphasises for the committee that the impact of the Covid-19 pandemic on people with disabilities should be understood in the context of the rights of people with disabilities and the actions taken or not taken to protect and realise those rights. Under the UNCRPD, to which Ireland and the European Union are party, the State has an obligation to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to respect their inherent dignity. This legal obligation is in addition to the fundamental principle of non-discrimination, including on the basis of disability outlined in Article 21 of the EU Charter of Fundamental Rights and in the EU's equal treatment directives. Article 15 of the Council of Europe's European Social Charter, to which Ireland is a party, guarantees the right of persons with disabilities to independence, social integration and participation in the life of the community. The right to equality is also set out under Article 41 of the Constitution, as well as in statute under the Employment Equality Acts and the Equal Status Acts.
It is clear that Covid-19 has given rise to significant risks of discrimination and the undermining of rights of persons with disabilities, including the rights of older persons, many of whom have disabilities. While Covid-19 is a once in a generation public health crisis, its impact should be seen in the continuum of how people with disabilities continue to be treated in the design and delivery of public policy.
The Covid-19 response has exposed inadequacies of Ireland's public policy for people who live in congregated settings, including nursing homes. This includes disruption of supports in services for people with disabilities and for family carers; accessibility of information for people with disabilities; lack of appropriate data that would allow for more responsive decision-making; education and employment for persons with disabilities; and the noted absence of people with disabilities in decision-making that affects them. These issues are detailed in our written submission and we are happy to discuss them further and at length with the committee.
I will highlight one example where it is critical that the human rights and equality implications of public policy are given full consideration. In March, April and May of this year, the Department of Health published guidelines for decision makers in the health service and how access to critical care should be prioritised during the pandemic in the event that demand exceeds availability. The commission has reviewed this guidance and is concerned that there are potentially profound implications for the human rights and equality of people with disabilities, older people and other vulnerable people. We are concerned that those most likely to be impacted by this policy guidance have not been adequately consulted. A consultation process needs to meaningfully consider the human rights and equality obligations of the State and the individual and collective rights of all of our citizens. As a commission, we have communicated our concerns to the Minister for Health. It is our view that the current moment, when the threat of Covid-19 has thankfully receded, represents an opportunity to further consider and develop this important guidance for healthcare workers.
More generally, with regard to the lived experience of people with disabilities, it is important to recognise the progress that has been made. This progress has seen Ireland move from an old charitable medical model of support for people with disabilities towards a rights-based perspective, supporting people to live inclusive, independent lives. It is a fact that the significant gaps and vulnerabilities in existing policy and services have resulted in a disproportionate impact of Covid-19 on people with disabilities. This disproportionate impact is at odds with the sentiment and message of collective solidarity in the face of the pandemic. Unless the law, practice and policy which underpin the rights of people with disabilities are made more resilient, we will continue to see people with disabilities face the same vulnerabilities relating to their rights at times of crisis, including times of economic crisis.
The path to that greater resilience has already been mapped out, as noted by Mr. John Dolan and Mr. Enda Egan, and includes policy and legislation already identified as being needed to bring Ireland into compliance with the UN Convention on the Rights of Persons with Disabilities. To this end, the commission also would add that the implementation of the public sector human rights and equality duty by public bodies and the exercise of their functions would be a significant and positive step towards permanently embedding the rights of people with disabilities in service delivery. It is imperative that we learn the lessons of this crisis and that policy makers ensure that human rights and equality considerations are central in the review and development of policy, the impacts of which are deeply experienced by people with disabilities.
I thank Dr. Conaty. I am sorry, members, that it is difficult to hear our witnesses in the committee room. It is the first time that we have sat here in the Seanad Chamber. I ask that our witnesses speak a little louder than they normally would because we apparently cannot do anything to change the sound levels until after this session.
I welcome the disability organisations and the commission. I thank them for their opening remarks. All the members of the committee have been contacted by families and people with disabilities, especially during the pandemic and in this particular phase. Mr. Egan referred to carer and family burnout. Many of those people have experienced that or are experiencing it at present. Only last week, I raised the roadmap for reopening services with the Minister. I am glad that those guidelines have been published and we are looking at a date in August, which is welcome. However, serious issues still face those services.
I welcome Mr. Dolan back to these Houses. I commend him on the work he did on disability when he was a Member of the Seanad. He referred to the 1% efficiency measure in the HSE service plan. I understand that is due to be reversed but he might highlight that and come back with a bit more information. He thinks it will be reversed but he might elaborate on that.
Mr. Egan referred to the roadmap and the carer burnout. I also note from the opening statements that 75% of residential settings, where I commend the service providers, saw no outbreak at all during the height of the first phase of Covid-19.
However, Mr. Egan also stated that 54% of respondents to the Inclusion Ireland survey had little or no contact from service providers. That is worrying. Many members of the committee have been contacted by affected individuals and their families. Education and day services have been shut down for those vulnerable groups. Could our guests comment on those matters?
Mr. John Dolan:
I thank the Deputy for his kind remarks. At least he has the good grace not to be sitting in my old seat.
The Deputy asked about the 1% cut. A sum of €40 million in accumulated deficits across a number of disability organisations was reported to the Joint Committee on Health last year, prior to the crisis. At the start of this year, we were flabbergasted to find that another 1%, or €20 million, was to be taken out of the budget as an efficiency measure. Representatives of the DFI met the then Minister for Health on 20 May last and he indicated quite clearly that the cut was not going to be triggered or operated this year, that it would not be possible to do so. The then Minister asked us for a number of days' grace before we would say anything about it in public. We subsequently wrote to the then Minister on at least two occasions and have still not received a clear response, in black and white, to state simply that the Department is confirming that the proposed cut has been removed. That is where that matter stands and anything that members of the committee can do to get clarity on it would be a great support. That €20 million and other issues indicate that cuts were still being made to services at a time when Ireland was back at full employment and had a healthy economy, prior to Covid-19.
Mr. Enda Egan:
The residential services in congregated settings have done quite well during the crisis. I am sad to say that approximately 13 people have passed away in congregated settings across the period of the pandemic. In general, approximately 0.17% of the population in congregated settings contracted Covid-19. The service providers did very well in that respect. Where there were outbreaks, the average number of people involved in those outbreaks in disability services was six, in comparison to 20 in nursing homes.
That leads to the serious issue we cannot remain complacent about, namely, a second wave of Covid-19. The wider issue has already been debated here this morning. If one looks back to 2012, the Government introduced a policy and report, Time to Move on from Congregated Settings: A Strategy for Community Inclusion. At that point, approximately 3,900 people were living in congregated settings, according to figures from the HSE. The average number of people being decongregated since then has been approximately 135 per year. The Government stated in 2012 that all congregated settings were to be decongregated.
I must bring in the next speaker if we are to give everybody equal time. Perhaps Mr. Egan could continue his reply in writing. I am sorry but we have a two-hour session and I cannot add to it, unfortunately. I will move on to the next speaker. It is an important issue so I would appreciate it if Mr. Egan would continue his reply in writing. The next speaker is from Sinn Féin. Deputy Tully has ten minutes.
I thank the witnesses for coming and outlining their reports to us, which I have read in detail. Like many of my colleagues in Sinn Féin and Teachtaí Dála across the other political parties, I have been contacted by parents of children with intellectual disabilities. Some of these are adult children and day care services for them have been suspended since March. Many of them have not had any supports for four months, as our witnesses have outlined to us. They have informed us that there have been cases of anger outbursts, of people being withdrawn or frustrated and a lack of routine. An indication has been given that the services may return in August. That is very vague. Has the DFI or Inclusion Ireland been given a date for the return of full services and are they confident that a budget to meet the costs of providing the full services will be available? Costs should not compromise the service. A full service is required. Parents are very much in the dark about this, which is adding to their stress. Many of them have ended up being ill and under medication as well, which is not what we want to see. Many of the people we are talking about are high dependency and there are care packages in place for them but these are not being utilised at the moment. Has either organisation been given something more concrete than just a date in August?
Mr. Mark O'Connor:
We understand that the time frame has been left to individual providers. We know from parents contacting us that some service providers have said 7 September, which it will have been almost six months before people are back, which is quite an extended period but this is the timeframe that we have been given by certain providers. It must be noted that the HSE document states very clearly at the outset that there are going to be reduced to supports for people. This obviously has a knock-on effect on family members who may be trying to get back to work or whatever the case may be. The family member with a disability will not receive a full quantum of service. This is very clear in the HSE documentation. Inclusion Ireland has also requested from the Minister that he puts in place a temporary Covid-19 payment so that private providers can secure additional premises to allow for social distancing, and if there are staff required in the short to medium term, to ensure that as many people as possible receive a service.
To be very clear, there have been very some very good examples of new ways of working that are very much in line with the HSE person-focused policy, New Directions. For people with the highest support needs, traditionally folk with severe and profound intellectual disabilities, face-to-face supports from support staff is the only care that will work for then. We ask that the Minister make available additional funding to the HSE, and HSE-funded providers to ensure that as many people as possible can get as much access as possible in a timely manner.
I find it quite disturbing that September is the date and it is being pushed out further. Many restrictions were lifted and services returned on 29 June. Our most vulnerable citizens deserve better than this. This is something I will raise with the Minister.
Congregated settings were also mentioned. According to Inclusion Ireland’s report, 1,500 people are living in nursing homes, not even in residential care, who are aged under 65. My colleague Deputy Violet-Anne Wynne from Clare raise the case of Jennifer Hynes who is only 42 and is living in a nursing home in Ennis and has been quite vocal in highlighting her case. There are 1,500 other people also in unsuitable placements because of lack of housing, which is a significant issue. Have the organisations been given any commitment on moving this forward and providing more independent living for people with intellectual disabilities and disabilities in general?
Many older parents are taking care of their child with intellectual disabilities, where the child could be 30, 40, or 50 years of age. Are there any plans relating to independent living for those people, when unfortunately, the day will come when their parents will pass away?
Mr. Mark O'Connor:
On planning, we would have to say "No". When one looks at the HSE's annual service plan, it makes provision for 90 emergency cases this year, whereas in previous years that figure was as high as 180. No funding has been made available to the HSE to provide additional independent living supports for people with disabilities. The Health Research Board calculates the level of need. There are more than 700 people with intellectual disabilities aged over 55 living at home. If one does the maths, their parents have to be in their 80s at least. There are no plans in place to provide for those folks. Dr. McCarthy will give the committee a better insight into the nursing home issues.
Dr. Joanne McCarthy:
The issue of nursing homes is an ongoing concern for DFI. As the committee knows, we have been on this issue for almost a decade. We welcome the commitment made in this regard in the programme for Government. As a matter of urgency, we will look to establish real pathways so that people have other options besides needing to go into nursing homes. We had been looking for a specific measure to be put in place and we are awaiting an announcement from the Ombudsman, who is about to make a ruling on this issue. We are hoping that will provide further evidence of the need to put in place a package of payments and supports in order that people have other options.
All of this comes back to the fact that 80% of the money in disability services funds about 30,000 people with disabilities. We are not saying that is a problem but simply showing that this figure illustrates the lack of investment in community-based services, especially personal assistance and home supports. They are the vital services that are needed in the community to support people who are out of nursing homes. They are also the services that are needed to support the resilience of families.
This pandemic has shown that the HSE, like all of us, when faced with a crisis back in February, put in a place a plan that prioritised what services families or individuals needed and then directed those services to them. As we moved through the past six months of the pandemic, many families and individuals who were not at risk presented as not being able to sustain the level of care or supports that were required independent or outside of services. We are talking here about the personal assistance and home support services. When we made a plan for Covid-19, we planned for residential care settings. We did not plan for community-based services. The responsibility and onus then fell on individuals and families and we are feeling the impact of that now. Rare Diseases Ireland did a survey of its members, almost 70% of whom spoke of the mental health impact of Covid-19. The reason was the additional level of responsibility and stress, as well as the caring needs that have been required.
To support Mr. O'Connor's point, we also know of at least 400 families who provide full care to ageing people with intellectual disabilities. Those providing that care are aged over 80. There are real pressure points. We have a lull, as our colleagues from IHREC noted. This is a moment in which we need to reflect on where these pressure points are. We have residential supports in place and we can begin to strengthen them. However, we do not have as clear a pathway to providing community-based supports such as personal assistance home supports and the outreach supports for day services that will be required to sustain families and individuals if we have another surge of Covid-19. These are important questions that merit being put under the spotlight so that we feel confident and families and individuals can be confident that services will be there for them in the community should a second wave occur.
I come from an educational background. I was previously a teacher and a special educational needs co-ordinator for a number of years.
I know the importance of therapies for students with disabilities or educational needs and I know those students are also suffering as a result of school being closed and the services and therapies not being provided.
I thank the witnesses for coming in today and for all the work they have been doing during this period. The secretariat did an excellent report compiling the various written submissions. I thank them for that because it shows the complexity of what we are talking about and how many people with different issues in their lives are impacted. I made some notes as I went through it. When we think about the people we are talking about today and the impact on them, it is people who are deaf, blind, have intellectual disabilities or who require physical therapy or speech and language therapy. It is about the dignity of work and being able, or unable, to participate in work. There are many complexities to it and I know that all the organisations the witnesses represent have faced different challenges. Speaking with MS Ireland, for example, at once stage throughout it, it described the community impact, as the witnesses described, in terms of people not being able to get physical therapy. That is one small example.
If we put aside residential settings for a moment, we have seen the impact on people at home, and the witnesses spoke about the family care burden. From a practical perspective, will the witnesses talk about the sorts of services that have been lost because of the need to cocoon or the need to not have people coming into the house? They might list them out so that we can get a sense of it. It might be a question for the Disability Federation of Ireland, DFI.
Dr. Joanne McCarthy:
There is quite an array of service models within the community. There are home support services to help people get up out of bed, and the person goes back to do some light housework. There are also the PA services that support a person out into employment. There are then what we would call much softer community services, which are undervalued but if they are taken out of the system have a significant impact.
Dr. Joanne McCarthy:
Some of those would include peer support services. Many of the neurological organisations would provide peer and family support services. These are very skilled people who come in and out of families at the onset of the neurological condition and travel through that family's life to the pathway of the condition. They are able to provide expert knowledge and support. If we take, for example, motor neurone disease, they might have a family nurse who works with them. They know the trajectory of that condition from diagnosis to, unfortunately, the end point and then on to supporting families out the other side. It is those sort of services. I will use motor neurone disease as an example. We know there are approximately 400 families at any one time in Ireland who are affected by motor neurone disease. It is a ravaging condition that moves very fast. For most people, from diagnosis to end of life is about four years. That organisation works with that family to make sure they have access to the appropriate aids and appliances, information around self-help for the carer, and information around a good quality of life for the person at the different stages. They would have a nurse and also, if I remember rightly, a family support, and they would also provide peer support. All of those services went online very quickly as best they could but in many cases, and Inclusion Ireland will probably talk about this also, some services can only be delivered face-to-face. All those face-to-face or person-to-person services were withdrawn. While efforts were made to put online services in place, they could not fully replace face-to-face services at any one time. In the lockdown, we were unable to get aids and appliances out to families if a condition changed dramatically very quickly. I am sure they were not able to get aids and appliances to those families. It is that level of community infrastructure that is often not fully appreciated by those outside our sector. We do have day and residential services, and the core service programmes, but it is the softer community services that support the resilience of families and individuals to live with a level of independence in the community that are important. Many of those got lost or had to go online and therefore may not have had the same immediacy as might have been required.
That is exactly the reason I asked the question.
It can be very difficult for outsiders who are not living with a condition or going through that as a family to really understand the importance of the supports that are being provided. I thank Dr. McCarthy for taking the time to do that. With specific regard to motor neurone disease, as has been said, the condition progresses very quickly so six months is an extremely long period to be without services. There can be significant changes within such a period. It is difficult for families to cope with that and remain resilient.
I have a couple of questions on Dr. Conaty's submission. On the second page he states, "The COVID response has exposed inadequacies of Ireland’s public policy in relation to" a number of listed areas. On the point he made about "the lack of appropriate data that would allow for more responsive decision-making", will he give an example of what he is talking about?
Dr. Frank Conaty:
What we have heard up to this point has cast in poignant relief the fractured nature of policy on, and services provided for, people with disabilities during this crisis. There is a completely inadequate amount of data available on the manner in which the Covid-19 pandemic and the response to it has impacted on people in different groups with different disabilities across a wide spectrum. Without that disaggregated data, it is very difficult to direct appropriate policy responses. It is crucial that this deficit be addressed and that the information be provided. This would allow both the commission and the Oireachtas to do their jobs in respect of oversight. Without the data, difficulties arise.
Dr. Frank Conaty:
The impact on people with disabilities across the entire spectrum, including those with physical , sensory and intellectual disabilities, has not been the same. There are many differentiated needs. Therefore, the response to Covid-19 has impacted upon people very differently. We need to understand what those impacts have been. We need data in that regard.
People who had been attending the Trinity Centre for People with Intellectual Disabilities and who could not finish their courses or internships may have suffered a significant regression with regard to their development and ability to participate. Is that the sort of thing Dr. Conaty means?
Dr. Frank Conaty:
It is a good example. Another very good example is adults who have intellectual disabilities who have not had day services since 14 March. The impact on those adults will again be different for different individuals but we need to understand what those impacts have been. We mentioned regression a few times. That is quite evident. We do not have the data or information to inform a policy response that is directed appropriately.
In his statement, Dr. Conaty also states, "the Department of Health published guidance for decision-makers in the health service on how access to critical care should be prioritised during the pandemic" and "The Commission has reviewed this guidance, and is concerned that there are potentially profound implications for the human rights and equality of people with disabilities, older people, and other vulnerable people." Will he provide some detail in that regard? What precisely does he mean by it?
Dr. Frank Conaty:
The guidance was welcome but it must be recognised that it was brought in during a crisis. There has been no real ability to consult people who may be impacted upon in this regard. We are calling for the voices of people who could be directly affected by the decisions made under these guidelines to be heard and for them to be consulted. It is welcome that the guidelines indicate that decisions should not be made on grounds that discriminate against certain categories but that refers to individual decisions. What about decisions in general? Many aspects of the guidance are welcome but there is a lot of ambiguity and uncertainty with regard to some of it and how it might inform the environment in which decisions will be made. It is such a profound issue that it requires further consultation and development. We have the opportunity to consult and develop further before those guidelines are required. We hope they will not be required but they may be.
Dr. Frank Conaty:
In the context of how the guidelines refer to the decision environment, as I would term it, the factors that have to be taken into consideration in making decisions on access to critical care can be very wide. I emphasise that the commission is not indicating what the answer should be, but that consultation is required.
For example, the guidelines speak to aspects such as life years, quality of life and the application of frailty scores. The manner in which those may be brought into the frame in terms of decision-making meeds to be teased out properly and discussed. We need consultation across those who may be directly impacted. There is no particular guidance or clarity in the guidelines at the moment as to what we actually mean by life years. Are we suggesting that one person's life year is equivalent to another person's life year? None of these discussions are evident from the document. Crucially, we do not see evidence - it may have happened and we would like to see it - of discussing the guidelines in the context of human rights law, international and domestic. We should bring those principles to the fore in the discussion on where these guidelines should go.
I welcome all the people before the committee. I will put a few things on record first and ask one question afterwards.
The word people with disabilities and their families have used to me since the pandemic struck is that they feel abandoned by the services, particularly people who were using the day centres or adult services. Prior to the pandemic there was a huge crisis. That will be multiplied now in terms of accessing speech and language and other therapies and, indeed, trying to find out whether people want assessment of needs.
This morning's meeting is welcome and we need to have a serious discussion on how people with disabilities are affected by Covid-19. We have seen across all the sectors, quite rightly, initiatives such as the July stimulus, which is welcome, but we really need to look at how people are affected. Regarding the roadmap for reopening day services and residential services, and there is a sense that while there is a roadmap and there is talk about August, it now looks like it could be September, is there real engagement with the Government and the HSE with these service providers to give them guidance?
In respect of a service provider in my area, St. Joseph's Foundation in Charleville, and the transport issue there, some service users travel 30 to 40 miles from four counties to come to the services in Charleville. That provider has been looking at the transport issue, but what will be the resolution to that? Many families with adults with intellectual disabilities cannot or do not have the wherewithal to provide that transport because the parents are elderly or because they are otherwise not in a position to do so. What will be the solution to the transport issue? Some service users are looking at alternatives. What kind of funding is available for that?
Is there a real sense of urgency that families have been abandoned, especially as we move on in months in the pandemic? The carer support groups within those families are meeting and trying to help each other. I have heard stories from some service providers who have been giving hour-long respite for families so that parents can do simple things like take a shower and so forth, because there are people in their care with profound disabilities. They have been the unheard voice in the calamity that has followed the pandemic.
This morning's meeting is welcome and further engagement must take place. We need to get all the Departments and Ministers in before this committee to ensure all families get a sense that we as a Parliament and this Covid committee are taking on board their concerns and responsibilities as they go forward to make sure everything possible is done to alleviate the crisis for families.
The words "breaking point" have been used a number of times already this morning. Families are at breaking point and they are really looking for some sense of hope, some sense that we understand their plight and some hope and guidance about when the day, residential and shared care services will resume.
What is the guidance on the shared care services? When will they resume? There is a sense from the service providers that they are engaging somewhat slowly with the HSE, and the HSE is engaging with the Department, but there is no sense of urgency about it.
Could all Ministers involved come before the committee to deal with these urgent matters? My final question is for Ms McCarthy but all the witnesses might comment on it. Is there an urgency to the HSE's engagement with the service providers at the moment to try to make the best service available to service users and their families through the restoration of adult services, day services, respite services and residential units that have been closed due to the pandemic?
Mr. John Dolan:
I might make a few comments on that question, and others may want to come in as well.
The Deputy mentioned people feeling abandoned. Post-Covid was not the first time he or his colleagues heard people talk about feeling abandoned by the State and by public services. It has ratcheted up hugely since the pandemic but things have been in a difficult space for a long number of years and we have not figured out a way. It goes back to a point made by Mr. Conaty about getting the numbers. The numbers are going against us. Babies are being born today who would not have seen the light of day ten years ago. There are more complex needs. People are generally living longer. People with disabilities are, thankfully, living longer. Our demographic trends are going against us. That is the frustration that policymakers have sometimes when they think they are putting in more money, but they are not putting in enough of that additional money for the greater need that is there. The feeling of abandonment is certainly being very much heightened.
The other issue is about lack of ambition. It is not good enough that people with disabilities do not die from Covid. It is absolutely magnificent that there has not been the kind of attrition we have seen in other areas on that matter for people with disabilities. However, the ambition cannot be that people's lives go into a freezer during the Covid period and we think that is okay; it is not okay. The Deputy asked for a range of Ministers to be brought in and he is absolutely right. Without even mentioning the UNCRPD, that is what it is all about. It is every Minister's job; it is every part of the public service's job to do their part and to do it together. First among equals is Minister for Children and Youth Affairs, Deputy O'Gorman, who is now in a position to be at the core of that and to be the driver of that.
I would like to make one further point and then allow my colleagues to come in.
Mr. John Dolan:
When Deputy Moynihan referred to the local service provider he talked about one organisation. This is not a criticism of the Deputy, but a pile of invisible organisations are providing soft support to people in his community and every other community. They do not have vans and buses or campuses. That is part of the issue as well.
I thank Mr. Dolan. We are very severely constrained in the number of sessions we can have, especially given the broad remit of the committee and the duration of each of those sessions.
If anyone else wishes to respond very briefly to Deputy Moynihan's question I will allow it, but I ask that they speak for no more than half a minute.
Professor Caroline Fennell:
I will simply support the notion that the UN convention is at the heart of this. We have the roadmap and we know what needs to be done in legislative and policy terms. The State has that obligation. It is obliged to do so and that costs money. We know what has to be done. It was not done prior to the pandemic. All the pandemic has done is expose the difficulties that are there and the system and its failings as they were prior to that. It needs to be changed. We know how to change it and we need the money to be committed to change it.
I refer to Deputy Moynihan's suggestion that we bring in the Minister for Children and Youth Affairs.
We do not really know what we will be doing in September. Obviously, anything we propose is subject to the agreement of the Business Committee but it does make sense to bring in the Minister, Deputy O'Gorman, and the Minister for Health to deal with the broader issues of the response to Covid. Once the sectoral committees are up and running, they will be able to bring Ministers before them on specific issues.
I will now move on to the next speaker, Deputy Costello of the Green Party, who has five minutes.
As the witnesses probably know better than me, the at-risk-of-poverty rate among people with disabilities is approximately 46%. There are huge issues regarding a lack of supports for employment, flexible working conditions and cliff-edge social welfare entitlements. There was mention of a lack of preparedness regarding infection on return to work for people with disabilities already in employment and with health conditions that compromised them. Will the witnesses comment on what employment supports we can put in place in the short term? As a follow-up, are there particular aspects of home-working, which will obviously play a larger part in the lives of the future workforce, as it relates to disability that could be supported by the Government?
Dr. Joanne McCarthy:
This is an ongoing issue for us. The subgroup for vulnerable adults has a seat on NPHET and we represent the wider disability sector. Disability organisations have one seat. This is an issue we have been raising there because we need clarity. A number of people who have compromised health conditions, or members of their families who are carers, are seeking confirmation that the pandemic payment will be extended so they can continue to cocoon until such time as there is a vaccine or an alternative is put in place. This is essential because it will force individuals and families to make very difficult decisions as they will not be able to afford to continue to cocoon and will have to go back to work and place themselves and others at risk. For six to eight weeks, we have been looking for NPHET to give clearer guidance on this.
It was stated that people can apply for illness benefit but these people are not sick, they are trying to prevent themselves from being sick. It would also mean a drop of approximately €145 per week for that person. As we know, people with disabilities have the highest at risk of poverty rate within the population. They cannot really afford to take this risk. It is very important that the committee considers this in order to figure out what measures need to be put in place, starting with income and then supports. The other issue is extending the right to work from home where possible so employers are brought on board to support families in being able to make more appropriate decisions. These are two of the main issues on which we have been seeking clear guidance from NPHET on behalf of families and people who are medically vulnerable.
I will pick up on Deputy Carroll MacNeill's point regarding data because I was going to ask similar questions. Another issue in the context of the data, and I am speaking from experience as a social worker, is how practical is it to collect some of this data. I am concerned that it will place an administrative burden on already stretched services and increase the paperwork instead of direct time with people.
Mr. Mark O'Connor:
Quite a lot of the data has already been collected. We have been pressing the Department of Health to publish disaggregated figures on instances of Covid-19 in residential services for people with disabilities. It is already reportable to HIQA. The data is there but it is just not being shared.
Dr. Joanne McCarthy:
We have been asking through NPHET for data to be gathered on how many people who present at accident and emergency departments have underlying health conditions or disabilities. It is very important and there is a real misconception out there. Most people with disabilities do not live in residential services. They live either independently, with family members or, like the rest of us in our 20s, with their friends. Approximately 8,500 people are in residential services and we have 640,000 people with disabilities. Most of the people with disabilities will never be captured under the data paths set up through NPHET. It is very important that we find ways through which we are currently capturing data whereby we can disaggregate it and capture the impact it is having on those with disabilities.
The congregated settings came up a few times. The Irish Human Rights and Equality Commission makes reference to the HSE document "Time to Move On From Congregated Settings". That dates back to 2011. I am probably out of time, but can the witness speak briefly on what is needed? I am conscious of the comment that more money is needed but what have been the roadblocks to implementing this HSE policy?
We are out of time. Can the witness reply to that question in writing, as we are already over time? Thank you for the pertinent question, Deputy Costello, and I ask the witnesses to reply in writing. The next speaker is Deputy Duncan Smith, who has five minutes. There are no clocks for speakers in the Seanad Chamber so I will l tip the bell after four minutes.
I have lost ten seconds. I thank the witnesses for attending the meeting today and for their submissions and statements. My first question is for Mr. Dolan. His submission dated 29 June is very detailed and interesting and I thank him for it. He mentioned that a number of staff from the organisations were redeployed to other Covid-19 related services. How many staff were redeployed to tasks such as contact tracing? Furthermore, is there any indication of when they will return? What impact has their redeployment had on the delivery of front-line services by the organisations?
Dr. Joanne McCarthy:
Redeployment happened. In fact, there was an earlier question about the challenge of reopening services that we did not get a chance to discuss. When the onset happened initially there was a redeployment of staff from day services to residential services. I presume they were backfilling the 24-7 care that was required in residential services. There is a problem now because people in those residential services will not be resuming full day services. Those day service staff are still supporting the residential services so how does one release those redeployed people back into supporting the reopening of day services? There is an issue there because the same staff cannot be double jobbing. They cannot be bilocated.
There is also an ongoing issue that must be understood. We are moving away, and rightly so, from the concept of day services whereby one goes into a building, one stays there from 9 a.m. to 5 p.m. and then one is picked up and brought home. It is much more person centred. People have individual work plans. Some of them might be working two days a week in the local coffee shop or they might be going to an education and training board and doing some type of further education course. Day services are very different now from the traditional sense, and should increasingly become more different. However, none of those places is open now. People who would normally be using mainstream community-based services, which is the right answer, are now looking to come back into - it is almost a regression - old models of service. This is at a time when we must abide by NPHET guidelines regarding the number who can be in at a single time. How fit for purpose are these buildings which we are trying to empty and which now are filling back up again? It is a complex issue both for the services that are trying to reopen and the families and individuals who are really stretched and need an answer fast.
I know from our representatives and the representatives of other colleagues that these live debates are happening. They are taking place at micro or CHO level where each service provider is engaging, and should be in deep engagement, with its CHO to figure out how it will reopen the service and what level of service can be reopened. At national level there are efforts to try to give an overarching framework to support that delivery. They are live issues, but we are dealing with very specific challenges within the system.
Finally, and it is awful and vulgar, there is a cost implication. It is going to cost more to deliver the very same level of service, not to mind to expand or respond to the day services and the new additional services that will have to be introduced over the next year. We are told that the services have to deliver within budget.
There is additional pandemic-related support for PPE and services; there is not for the fact that it will cost more to deliver even the same level of service. I think there is a realisation that, as crude as the return to the concept of cost is, we have to take it seriously if we are really serious about resolving this issue.
I thank Dr. McCarthy for her comprehensive answer.
In the interest of time, I will finish on a comment. I was interested to see in the submission from DFI that there remains a vast difference between the rights of workers in section 38 agencies and those in section 39 agencies. The new Government will need to remedy this as a matter of urgency.
I thank the witnesses for their submissions and contributions.
The pandemic did not cause the impact of underinvestment in social and healthcare services by the State but it did expose it more. It also showed the incredible resolve and dedication of people with disabilities, their families and volunteers and workers in sports organisations. We know this is a particularly challenging time for people with disabilities and additional health complications. The absence of services for months, the erosion of independence and ongoing uncertainty all take their toll. One of the key lessons is that the State must do more to support our disability sector. It is clear to me from conversations with people who have contacted me and service providers in west Cork, such as Cope Foundation and CoAction, that each story underlines the essential work that is carried out by families, communities and organisations in the area. The State abdicates responsibility for this sector, relying on voluntary organisations and families to provide essential services, and I agree with all the witnesses that this has to change. Each of their submissions highlights the challenges for the sector and individuals concerned and provides guidance on disability inclusive recovery. I wish to focus my questions on this area.
Several of the statements refer to Article 19 of the Convention on the Rights of Persons with Disabilities, which guarantees the right to live independently in the community rather than in institutions. Mr. Egan and Mr. O'Connor rightly call on the Government to make funding available to the HSE to move the remaining people in congregated settings to homes in the community. Could they briefly outline what would be involved in achieving this?
Mr. Mark O'Connor:
It depends. We have spoken a little about data, but it depends what number one looks at. The HSE tells us there are approximately 2,000 people in congregated settings, but the folks in HIQA who go out and inspect these places tell us there are approximately 2,900, so there is a significant number of people in these settings. A policy has been in place for almost nine years to move people out. It saddens me to say that up to this point people in these settings have had as good a chance of passing away in a congregated setting as being moved out to a community setting. What we do know, however, and what comes up in HIQA's annual reports, and we have done some research ourselves, as has the National Disability Authority, is that people's lives improve significantly when they move to smaller, community-based settings in line with their own wishes and desires, living in their own homes, such as all of us here do, being supported to do the ordinary things one does in one's own home and accessing community services. Even HIQA's annual report from this year states that people lead lives that are not in line with human rights and that in larger residential settings there are issues in protecting people, safeguarding and human rights issues.
Dr. Frank Conaty:
I wish to emphasise and support what Mr. O'Connor said, but the issue of decongregation has been a persistent and ongoing difficulty for the State for decades, and we have not solved it. We have allowed it to continue through policy deficits. It is not the pandemic that has caused this, but the pandemic is giving rise to greater risks for people in these congregated settings. I will point out just one risk to human rights that will persist if we continue to have people in congregated settings. Since 11 March, people have been in residential settings that have been essentially shut down, and these people have been confined to home without access to family. We might say the position is similar for elderly people cocooning. Many of these people nevertheless need access to family as their immediate advocates. That access has not been available. The fractures in the policy architecture we now see this pandemic showing up have always been there but it is clearly within our gift to address and correct them.
The UNCRPD is the pathway to doing that and we need to be real about its application and implementation.
The witnesses have collectively highlighted the shocking estimate of 1,500 people under the age of 65 living in nursing homes. I have unsuccessfully tried to get figures from the HSE for Cork on this matter. All Deputies need to do whatever we can to end the practice of accommodating under-65s with disabilities in nursing homes.
There are multifaceted issues around students with disabilities, which the witnesses also raised in their statements. Families are concerned that any individual or collective progress may be lost when schools and colleges open in the autumn. What priorities should we as Deputies focus on in supporting young people and students with disabilities or additional needs if they return to education?
I thank all those who have given presentations. I will hone on the question of carers. I have been in touch with a number of different carers, including Faye Hayden and Linda Comerford, who are part of the Enough is Enough - Every Voice Counts group. I understand that group is organising a protest next Wednesday at 12.30 p.m. at the Convention Centre to demand the reopening of adult day services. At normal times, it would be accurate to say these people's work is significantly undervalued by the State and it saves the State an estimated €10 billion a year. At this point in time, the situation they face, like those for whom they care, is exacerbated by the absence of services and so on. One carer told me they are screaming and that they are physically and mentally exhausted but they feel nobody is listening. My question is for Mr. Egan but others may answer as well. I ask him to give us a picture of what the situation is like for carers right now and what needs to be done by the State to address it.
Mr. Enda Egan:
The report we just published shows very clearly that people are under immense pressure and that there have been unforeseen behavioural issues for some people with intellectual disabilities because of the Covid-19 shutdown. Some people with intellectual disabilities need consistency in their daily routine and their friends and support workers from within the day services have been taken away from them as a result of the closure of the services. That has brought about a range of different behaviours that families have not seen previously. That, in turn, has put huge pressure on families, many of whom are trying to work from home or provide care for other family members and other siblings in the home environment. This has brought about huge issues for people trying to home educate, as the environment within the home is completely different from that in the school. Many families are experiencing complete physical, mental and emotional burnout from trying to juggle all these issues that Covid has brought about. As Deputies have highlighted, the real concern for people is that they cannot see an end to this. There is no light at the end of the tunnel. For example, we dealt with somebody yesterday whose sibling was getting a service for one hour a week. They have been told that will go up to two hours a week from 8 August. There is no pathway for how that is going to increase, as has been said repeatedly this morning. The pathway document with guidelines on the resumption of day services issued by the HSE last week clearly states that while there is a Covid-19 emergency, services are not going to return to pre-Covid levels.
There is no indication as to what levels can be achieved. We all know that we will be living with this situation for some time. There will have to be a national movement of people with intellectual disabilities, everybody with a disability and family carers to ensure that the Government is aware of the pressures those people are under. The Covid-19 pandemic is obviously having an impact on the abilities and rights of people to go out and march and bring their views to the streets. I would not like to see that situation taken advantage of as a result of people not being able to do that.
What needs to happen is that services need to open up very quickly. As has been outlined, some organisations and service providers have done well. Others may have appeared to have used the pandemic as a reason to not provide a service and perhaps to take a very risk-averse view regarding Covid-19. From here on, however, the HSE at national level is adamant that services need to reopen quickly. At the local level of the CHOs, there needs to be clear engagement with service providers because these services have to be got up and running very quickly.
There are issues here, however, as has been stated, regarding providing some funding to maximise capacity and also to take advantage of the situation to put in place the kind of services and methodology in service provision that has been underpinned by the policy, New Directions, which was introduced in 2012 with a four-year plan. There are still major gaps regarding how that plan has been implemented, but there are opportunities now for service providers to implement that New Directions plan properly and to ensure that the person with the disability is right at the centre of the service being provided.
I thank our contributors this morning. Deputy Duncan Smith might have addressed aspects of this issue, but I will return to the topic of section 38 organisations versus section 39 organisations. I visited the Waterford disability services some months ago and there was active recruitment happening at that stage from section 39 organisations into the HSE. I would like to know from the witnesses if they think that recruitment has now stopped. The Minister or some of his representatives in this committee previously stated that a policy had been instituted that would not see that happen. However, is that recruitment still happening and what is the witnesses' latest understanding regarding the restoration of pay and services for section 39 organisations?
Dr. Joanne McCarthy:
There is still a lack of clarity around the restoration of pay. A package was put in place, I think in 2019 but I cannot be certain, where the top 50 funded organisations under section 39 would get a restoration of pay. That left a significant number of organisations that are delivering services that also had pay issues but that have not been addressed. We have asked and, as far as I know, there is still no plan to address the restoration of pay for that part of the section 39 organisations.
The Deputy is dead right. That means that often the organisations deliver very similar or matched or the same model of services through section 39, but those organisations are not able to match the pay of section 38 organisations, which are essentially funded through the public purse and are on the public sector payscales. The brain drain, therefore, continues to happen. A physiotherapist might be working in one organisation and then a vacancy comes up with a section 38 organisation. That person will apply for that post and then leave, because he or she will be doing the same job but for more money in the new job up the road. That whole level of inequity is one of the issues that we know exists.
These are the fundamental issues that are continuing to destabilise services in the disability area. Those issues are also one of the key things identified in the review undertaken by Catherine Day. The independent review group had been established, just before Covid-19 struck. We had our first meetings in October and November in the Department of Health. These are some of the key and tricky issues that have to be addressed. While we talk about this issue in respect of pay, we must not forget how the individual or family will experience the impact of that pay issue.
It is that destabilisation of the service. Can a person in a section 39 organisation be confident that the physiotherapist with whom he or she has built a relationship still be in place this time next year? Maybe the physiotherapist will get lured to a section 38 organisation that has the capacity to pay more money.
My thanks to Dr. McCarthy for that. This is ongoing but I hope it is an area the Government will address between July and September.
I commend the work of all the witnesses, especially the former Senator, Mr. Dolan. I wish to discuss access to disability services and give a shout out for Karl Cretzan in Waterford. He is a cerebral palsy sufferer and he is now over 18 years of age. Although he lives less than half a mile from the Central Remedial Clinic unit on the grounds of University Hospital Waterford, because he is over 18 years of age he can no longer access physiotherapy, occupational therapy or language and speech therapy. He is in the same boat as everyone else who is over 18 years of age. Can the witnesses give us any comfort that these people will be looked at when it comes to future provision of the general services, especially those available in the community but not accessible for these people?
Dr. Joanne McCarthy:
There is an ongoing issue with those arbitrary gaps that arise within disability and it happens with those just under 18 years and just over 18 years of age. We now have a comprehensive programme for children for physiotherapy, respite and occupational therapy. However as soon as the person reaches 18 years of age the same programme is not in place. The Disability Federation of Ireland along with colleagues, including Inclusion Ireland and other umbrella organisations, put in for more funding in the run-up to the last budget and during the election. We were looking for €211 million over five years to fund day adult services such as the services the Deputy is talking about. Again, what is needed is sustained investment and a plan that outlines what we want to achieve for these people with the investment.
It is also important to remember that most of the 640,000 people with a disability are not born with disabilities. They are people like all of us here and they acquire the disability after a brain haemorrhage or car crash. They cannot access these services.
In mid-March, disability day services, including the intellectual disability services, were closed with a small number of exceptions. In May and early June, Inclusion Ireland surveyed the people who use these services and their families to establish the impact of the closure of services. In total, 291 family members answered the survey, as did 55 people with intellectual disability. The impact of the closure of the day service on the mental health of these people cannot be underestimated. A significant number of respondents reported increased loneliness, anxiety, challenging behaviour or anger. One third of those with intellectual disabilities said they had little or no contact with the services.
I will read from some of the responses received. One person referred to an odd text message but nothing else for ten weeks. Another person said he was highly disappointed with the services and the HSE. He felt absolutely forgotten about. He said there was little to offer by way of support for the family who care for him 24-7. Another person said there was no service aside from a ticking telephone call for the relatives. All they got was a telephone call. Another person said he was sent out a pack with a magazine and activities etc., as well as a telephone call.
Prior to the lockdown a total of 123 respondents had access to respite and a further 40 had access to home-based support. Since the lockdown only 15 people have had some respite and 16 people got some home-based support.
Here are more responses from the survey. One person said he got absolutely no respite and no day care since the service closed in March. This has had a tremendous impact of all concerned. His parents are managing him 24-7. The care was given over to them and there was no respite or home support. The carers were totally exhausted with never a minute off. There was no time for other family members who also needed support. There was continuous striving to maintain calmness.
It is of vital importance that the Minister for Health makes temporary funding available to ensure that as many people get supported with the greatest amount of time possible upon reopening the services. When the lockdown came I saw that people who had carers coming to their houses had their hours reduced from eight to six, to four, to two. I have seen carers who wanted to go to work told by the caring services they only had a half an hour or an hour to provide the services. Why were carers who were willing to work not allowed to work?
Mr. Mark O'Connor:
In terms of carers not being allowed to work, it is difficult to know. It has varied quite a bit from organisation to organisation. Obviously, there are public health guidelines in place and that severely restricted people in going into other people's houses, especially where there might have been somebody with an underlying condition. That has come through quite a bit in some of the anecdotal evidence that we have not included in the report. We have what is sometimes referred to as the sandwiched care generation where there might be a younger person with a disability in the house, a family member who has an acquired disability through age in the house and somebody in the middle. We have also got paid carers who come into the family home who are also going home to families where there are underlying conditions. A significant number of staff were redeployed to contract tracing, Covid-19 testing and supporting residential services and that led to much of the deficit in supports going into family homes. I suppose that is guessing at what a lot of it is but that is certainly what has been reported to us.
We have homecare agencies that give support to the elderly and people with disabilities in their houses. They were offering to work and looking for more hours and they were not allowed to work. The people who wanted to work had their hours reduced but their hours were kept to a bare minimum to stop them getting the carer's Covid payment.
I am sorry I must ask the Deputy to conclude. If anybody wishes to reply to that point, I would ask him or her to do so in writing.
I will bring in the next Fianna Fáil speaker, Deputy Murnane-O'Connor. In order to get everybody in by 11.30 a.m., I regret I must reduce the remaining slots to four minutes from five.
First, I thank everyone here today. It is so important that all of us work together for people with disabilities. I particularly want to mention my good friend, John Dolan, who has been a huge advocate for the Disability Federation of Ireland. I sat with John in the Seanad for four years.
I want to talk about preschool children. They are not expected to social distance and I believe they can go in groups, like pods. I am concerned that the HSE has reduced disability funding to organisations by 1%, which on the scale of things is massive. Will there be funding for these preschools when they go back? Is that a concern?
The second matter on which I received several phone calls is that children have not been receiving any therapies - physiotherapy, occupational therapy, OT, speech, psychology - as the HSE is now only operating face-to-face with priority 1 cases. Already, we have had long waiting lists, particularly for network disability team, NDT, autism spectrum disorder, ASD, assessments, with no new appointments being given. This is worrying for the families.
The early intervention service is simply not happening for many as by the time their turn comes around for assessment, therapy or speech or OT, early years have passed. We need to look at significant investments. Maybe I can come back on that one.
I would like to support Enough Is Enough and Linda Comerford, who is a carer. In fairness, we need to know when all the services are opening. Given that Ms Comerford is from Kilkenny, I am sure Deputy Funchion will raise it too. We need a roadmap. When I spoke to the Minister of State, Deputy Rabbitte, the other day, I asked her when we could get official dates. We have heard a suggestion that it might happen in August or September. The Minister of State told me she had been speaking to the HSE. She has asked about a web page because she believes it might give more information about the over 1,000 services provided to adults. I feel from dealing with families and listening to their concerns that there is a lack of information. What do the witnesses feel about the new web page that is to be put up by the HSE? Can I have an answer on that?
The other thing I want to ask about is whether there will be enough funding. Is it possible that when we go back to adult services or preschool services, we will not get the funding that is there? Have any of the different bodies been speaking to the HSE? Can someone come back in on that? Is my time nearly up?
Mr. Mark O'Connor:
This is not a Covid-19 issue, but obviously it has been exacerbated by the pandemic. The HSE's performance report from September 2019 indicates that many people in services were waiting longer than 12 months. That is an extraordinarily long time if one needs therapeutic input. Some 2,830 people were waiting for physiotherapy, 9,296 were waiting for occupational therapy, 1,035 were waiting for speech therapy and 2,636 were waiting for psychology for more than 12 months. I would add on six months in each case since Covid-19 has started.
When one digs deeper into the HSE's performance report one sees that hundreds of people have been waiting more than two years. It is a particular issue in all of the Dublin CHO areas.
Finally, the HSE has to do an assessment of needs within a six-month timeframe. Nationally, 10% are done within six months.
Mr. John Dolan:
I will make a couple of comments. First, I thank Deputy Murnane O'Connor for her kind remarks. The Deputy talked about funding for preschool, early intervention and the HSE web page, etc. I will give a quick omnibus response. A lot of these questions-----
I will help the committee by not taking all eight minutes available to me. I know we are under time pressure. I thank the speakers and witnesses for coming in today. I have a number of questions and many of them will be more relevant to the Department this afternoon. I want to ask the witnesses specifically about the adult day services, which were mentioned by Deputy Murnane O'Connor. Do the witnesses have any understanding of when they will reopen and what the guidelines will be? They do not seem to have not received any information or guidelines and it is a huge concern in that sector. Does anybody on the witness list have any information on adult day services?
Mr. Mark O'Connor:
The guidelines that have been issued by the HSE do not contain dates on quantum of service within them. The only reference to quantum of service is to say it will be a reduced level. Anecdotally, we have heard back from some people that the service for their family member will begin to ramp up after the August holidays. We have had contact from a few folks saying 7 September seems to be a date a couple of services have given out. Worryingly, a few folks have indicated they are looking at December and January.
It is actually shocking to think that some people will have to wait that length of time. We seem to fail people with disabilities or additional needs continuously and consistently. We always seem to talk about the waiting lists, not even with regard to Covid-19 but in general. Everything is a battle. One always seems to have to accept a different standard. It is really frustrating and I cannot imagine what it must be like for people and their families.
That brings me to my next question. Is Dr. McCarthy aware if a specific person was ever appointed to NPHET or to tie in with NPHET in any way regarding people with disabilities? It seems to me they have been totally forgotten about. We cannot have absolutely everybody on a committee but it seems this was a very crucial category that was not provided for
Dr. Joanne McCarthy:
I apologise. Disability in the pandemic was not going to be resolved by health alone. The really good thing about the vulnerable subcommittee is that the community Covid response was also sitting and reporting in to that committee. Many people with disabilities and their families were really dependent on the local responses that were happening on an ad hoc basis through the community response. Within disability and within the HSE we committed to responding and putting in place as best we could an initial emergency response to the pandemic. Any issues that we as a sector felt we could not get resolved we had the capacity to escalate to NPHET. Having fewer than 16 people with disabilities in residential services pass away as a result of Covid - which was still 16 too many - does speak volumes when one looks at the difference between what happened with us and within nursing homes. It was partially because we had that link.
There are some outstanding issues, the decisions around the wearing of face masks is definitely a problem for the deaf and hard of hearing. That is an ongoing issue that we have with NPHET. Several members of the committee have raised the issue today of how to continue to support medically vulnerable people who are cocooning and that is another issue we have with NPHET. We are still waiting for them to give clearer guidance to our sector on those two outstanding issues.
With all due respect to Dr. McCarthy, there are a lot more issues outstanding than those two. I do not think I have spoken to anyone with a disability or their families who have found the response to date acceptable. People have been totally abandoned. PA hours were cut, home helps have not been coming in and, as was clarified earlier, there are no dates for the resumption of some services. It may not be until December or January. This was already a sector so overburdened with waiting lists. From the point of view of children who are dependent on various therapies, so many of them have regressed. That is why it is important that there would have been a link. It is not necessarily a decision for DFI and we can bring it up with the Department later, but this group has been abandoned.
On masks, a number of people have contacted me over the last few days since that announcement was made, particularly about people with autism or sensory issues. If that is not made clear for them and to the public there will be an issue with people asking them why they are not wearing masks. As such it is really important that that is made absolutely clear. Otherwise we are saying to people with disabilities that they must stay inside their houses and not bother ever interacting with anyone. It is really important that that not be the message that goes out.
I have one last point on the UN Convention on the Rights of Persons with Disabilities. We have not ratified the optional protocol, which we need to do. In the opinion of the witnesses, how would the situation have been different if we had? I think people would have had a bit more power because they would have known they have the right to potentially take a case to the UN.
Professor Caroline Fennell:
What often happens is that change comes about because one individual is able to very concretely demonstrate how the State has failed. As such, if the optional protocol had been acceded to by Ireland it might have made a difference in the sense of the ability to demonstrate concretely the impact on an individual. It is unfortunate that has to happen. It often happens in situations that change is brought about because of a very visible example of where the State has failed.
It is very clear that the State does not need the protocol to know what has to be done. We know what has to be done. It is really about the issue of delivering on the promise that the State has made with regard to human rights and equality. The equality element speaks to the fact that we really need to have participation by all the citizens. In order for certain people to be able to participate, they need the supports that have been spoken about today to allow them to participate and live a full life where their human rights are respected and they are equal to all citizens of the State. That is what it is about. The Deputy has a point with regard to the protocol and it is something the State should address.
Dr. Joanne McCarthy:
I refer to a very important point which I hope will resonate with the committee. The Deputy talked about the lack of clarity around community supports. One of the main messages we want to leave today is that while NPHET did provide a pathway to understanding and looking in at residential services and the challenges there, in this break before the next wave, if it should come, we really need to provide the same level of clarity on the community supports, personal assistance and in-the-home supports. There is an expectation that NPHET will give that guidance and will invest in those services so that families and individuals are not feeling left abandoned as they are right now. That is really important and I thank the Deputy for raising the point.
I support all the speakers I have heard. We agree absolutely that we are in an appalling and unacceptable situation, not just for the families and their support but also for the people who actually have the disabilities such as autism and all other diagnoses and multiple diagnoses. In many cases these disabilities leave them with a very poor quality of life and the families are also really suffering. A number of parents have been in touch with me. One has a 25 year old daughter who is severely disabled and completely dependent for everything. The mother writes that it is very hard on her body to look after her. Her back is in absolute agony from the physical demand. She is emotionally drained and down in herself at all times. Other parents have more than one child with a disability. They are absolutely frustrated and angry. They are spending all their energy trying to look after their loved ones and it is just not working for them. I refer to a parent of a teenage son who has multiple disabilities and is 15 years old. He is over 6 ft tall and the mother is not able physically to meet his needs but has been refused a residential place for him.
In view of all the points the witnesses have made and that we are making here, how do we ensure there is action? The situation may well be exacerbated by the flu that is on its way and perhaps by a return of the coronavirus. We need a plan. One of the witnesses referred earlier to everybody getting together. Is there a forum through which we can insist on this to the Minister, the HSE and everybody else, including the bodies and advocates for families? Where is our next step? We can talk here all day but what action are we going to take as a result?
Mr. John Dolan:
There is one absolute linchpin focal point that is now available to the Oireachtas, namely, the commitment to establish an Oireachtas joint committee on the implementation and monitoring of the UN convention. We have for the first time a full Minister with responsibility for disability. The Chairman has just picked up on the importance of having that Minister come to the committee and of making sure that the decision the Dáil made two years ago to ratify the convention is put front and centre in all of Ireland's plans. Deputy O'Dowd and I did a lot of work on the transport committee and that is one area. Other areas are housing, employment and education. There are a whole range of them. The Spanish Parliament may also have some kind of mechanism, but I think Ireland is the only Parliament in the EU that now has this opportunity agreed to in the programme for Government.
It is really important that it is taken and that this becomes a focal point for all Members of the Oireachtas, all the various interest groups, people with disabilities, their organisations and so on. They must drive it.
Members of the Oireachtas have spoken this morning about issues relating to different Departments. They will all sit on committees of one kind or another. I appeal to them to keep the flag flying in those committees for the inclusion of people with disabilities. The articles of the UN Convention on the Rights of Persons with Disabilities contain very plain language about what must be achieved. This must be kept front and centre in every Oireachtas committee.
I thank the speakers who are here this morning. We are in no doubt about the challenges facing the disability sector as it seeks to come to terms with the Covid-19 era. Many of the witnesses have eloquently emphasised that those challenges existed before Covid-19. I am particularly concerned about the funding challenge and the timeline for a return to full day care services. We got the roadmap last week and there was some indication of a possible return of services in August. I am concerned by the overtures from the witnesses today to the effect that it could be as late as December or possibly the new year before we see any real meaningful service in that area.
We have several service providers in Longford, including the Phoenix Centre, the National Learning Network and St. Christopher's Services, with which I know Mr. Dolan is very familiar. He came there and spoke at the annual general meeting several years ago. I note 12 of the St. Christopher's Services day care staff members were redeployed to provide cover at residential settings during the Covid-19 pandemic. In order for St. Christopher's Services to expand its day care service to families who are genuinely and badly in need of it, it will have to bring those 12 staff members back from deployment in residential service. The catch, unfortunately, is that those in residential care cannot be left alone.
This comes down to the sums. The annual cost of replacing those 12 staff members will be just under €580,000. If a day care service resumes without additional funding it will be patchy at best and certainly significantly inferior to the service available at St. Christopher's Services before the onset of Covid-19. We have seen €70 million ring-fenced for the childcare sector. It was much needed and it is very welcome. Are the witnesses satisfied with the level of engagement to date on the part of the Department and the HSE on the funding necessary for a resumption of a meaningful day care service as quickly as possible?
Mr. Mark O'Connor:
The Department of Health will probably be responsible for funding. The HSE carries out functions for the State but only goes as far as the funding can take it. As I understand it, the HSE has been told that no additional funding is available for additional staff. That is why at a quite early stage we called on the Minister to restore service to pre-existing levels. If that requires a temporary Covid-19 fund, so be it.
We have spoken about the UN Convention on the Rights of Persons with Disabilities. That envisages people being involved in their everyday communities. There is a HSE policy on this, New Directions. That should give people choice around education, employment and making progress in their lives. It has not been fully implemented. If any new funding is available it should be channelled in the ways called for by New Directions. That does not necessarily mean people having to go to a big centre somewhere. As Dr. McCarthy said earlier, a lot of people work a couple of days a week. They can be supported to go from their homes to their places of employment. If they are accessing an education course in the community, they can be helped to do that from their homes. This does not always have to involve travelling to a big centre. Additional funding is certainly needed to restore the previous levels of service.
I thank all the organisations for the work they have done in very challenging times. With more than 6,000 people in residential settings, it is significant that people were protected so well. I believe only 166 people were identified as having Covid. It is welcome that the number is so small in these very challenging settings. I compliment all the staff working in them.
I wish to focus on the long-term challenges we now have in the disability sector and also with the growing elderly population. I believe the Disability Federation of Ireland represents more than 120 different organisations. About 2,500 section 38 and 39 organisations provide essential services throughout the country in a range of areas. Covid has highlighted the challenges. Is it time for a joint approach and amalgamation of services rather than everyone working in a different pathway?
A number of years ago a multiplicity of unions represented workers. Over a period of time they came together and the unions achieved much more as a result. Should organisations in the disability sector come together rather than acting independently? In the past six years, the number of full-time staff in the HSE has gone from 103,000 to 123,000. That has not happened in the disability sector, meaning that it is getting squeezed in the process. Rather than having so many independent organisations, is it now time for organisations to consider amalgamating, allowing them to provide a far more comprehensive service?
Mr. John Dolan:
The Deputy mentioned the unions. I am not up to date with the numbers. At one stage we had as many trade unions as Germany had and that was after efforts in Ireland to get unions to amalgamate. The Deputy asked if that is the right way to go about it. Organisations working hand in glove is the key issue. We all now have something we did not have until recently. The United Nations Convention on the Rights of Persons with Disabilities is the glue that pulls us all together, particularly now that the Government has ratified the convention. Government agencies, Departments and bodies can now say that is the bible we all have to work towards and with which we wholeheartedly agree. That would have a major unifying effect.
Deputy Colm Burke and I both served on the Oireachtas health committee. He will be aware of the number of small, new support groups that emerge when the diagnosis for a condition, a spectrum or whatever becomes possible. Where will they fit in? The Irish Motor Neurone Disease Association was set up over 30 years ago. Those involved approached two existing organisations at the time and asked to work with them. That was not possible because it would have opened up a whole focus on other organisations doing the same thing.
One of the fundamental rights in Bunreacht na hÉireann is the right to form associations and unions.
The issue is how we can get them to work more cohesively together.
My point is that there is going be huge growth in the number of people over 65 in the next ten years. It is going to go from 640,000 up to 1 million. The big issue is the challenge about having the numbers of people to provide the support. In the past 12 months when we had full employment, there were great challenges for every organisation to get people to provide the services. That is going to come back. We have to take that into account. Therefore, the disability sector is going to have that challenge.
Mr. John Dolan:
It is not just the disability sector that has the challenge, it is the State that has the challenge. I am not being bullish. There have always been amalgamations of organisations over time and organisations have also gone out of operation. The issue is identifying the best way to ensure that the voices of people and families are heard and that they are able to be involved. In all fairness, from my almost 40 years of involvement, doing mergers and acquisitions as would be done in the private sector does not work in public benefit organisations. We went from having ten or 11 health boards to having one. That is the final thing I will say. I thank the Chair.
I thank Mr. Dolan and Deputy Colm Burke. I apologise to all of our witnesses for the fact that we had to rush through it. It has been the nature of this committee because we have health guidelines. We need to get our guests out of the committee room they are in now. I thank them very much for coming and answering all of our questions. I thank the Deputies who contributed.
I said we would return to the issue of our report and recommendations on the stimulus package at the end of this meeting. I do not know if we need to go into private session to do so. Do we need to discuss the amendments or are all of them agreed?
The other is removed. Other than that, are all the amendments that have been circulated agreed to? Agreed. Is the report, as amended, agreed? Agreed. I thank the staff of the secretariat for all the work that went into this. In particular, I thank Mr. Bryan Coughlan for his work into the early hours of this morning and then a little bit later.