Michael Moynihan (Cork North West, Fianna Fail)
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The purpose of this meeting is to discuss awareness raising in the context of the lived experience of congregated settings. On behalf of the committee, I welcome Ms Derval McDonagh, chief executive, and Mr. Paul Alford, advocacy project worker, Inclusion Ireland; Ms Emer Begley, director of advocacy, and Ms Ríona Morris, policy and research officer, Disability Federation of Ireland, DFI; Ms Joanne Condon, acting national manager, and Ms Suzy Byrne, greater Dublin regional manager, National Advocacy Service, NAS; and Ms Barbara O’Connell, co-founder and chief executive, and Dr. Karen Foley, head of service operations, Acquired Brain Injury, ABI, Ireland.

Before we begin, there are some housekeeping matters. All those present in the room are asked to respect the Covid-19 policies. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable or engage in any speech that may be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory, they may be directed to discontinue their remarks. It is imperative they comply with any such directions.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any persons outside the Houses or an official by name in such a way as to make him or her identifiable. Members can contribute online as long as they are within the precincts of the Leinster House complex. Prior to making any remarks, I ask members participating online to confirm whether they are within the precincts of Leinster House.

Without further ado, I call Ms McDonagh and Mr. Alford to make their opening statements.

Ms Derval McDonagh:

Good morning. I sincerely thank the committee for inviting us to this important session. I will hand over shortly to my colleague, Mr. Alford, advocate and spokesperson for our organisation, to share his thoughts on congregated settings and institutional living in a moment.

First, I will speak briefly about Inclusion Ireland. We are a national civil society organisation focused on the rights of people with intellectual disabilities. Our sole purpose is to work towards the full inclusion of people with intellectual disabilities by supporting them to have their voices heard and advocating for rights under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. "Inclusion" is a word which is overused and misunderstood. It is fundamentally about community, belonging and valuing people for who they are. It is about systematically dismantling the barriers that people face in having a good life. It is not about “fixing” people, it is about fixing systems. One of the most pervasive systems we have in Ireland today is that of institutionalisation and institutional thinking.

Ireland has a long and sad history of institutionalisation, from workhouses to Magdalen laundries and psychiatric institutions to direct provision centres and congregated settings for disabled people. We have closed many institutions in Ireland in recent years and yet the legacy of institutionalisation lives on for people with intellectual disabilities. More than 2,400 people still live in homes with more than ten people. We know of institutions where 30 or 40 people are living together in a campus-style setting. Institutional living, however, is about much more than numbers of people living together. Institutional thinking can exist in small houses as well as large. Fundamentally, where a person has no choice about where they live, who they live with or how they live, all the hallmarks of an institution are present.

Evidence suggests, however, that a person has much more of a chance of a good life in smaller, community-based homes. HIQA’s report in November 2021 stated: "Many residents living in campus-based or congregated settings experienced inequalities in the quality and safety of their services, control over their own lives and their ability to independently exercise their rights and choices." Institutionalisation is also a way of thinking and acting. It is a set of values and beliefs which allows us to treat one group of people differently to another. We would never conceive of a situation where a non-disabled person would have no choice but to live in a house with people they do not know, or maybe even do not like, for their entire lives. We would never consider that a non-disabled person would have fundamental choices about their lives decided by a committee. It is not only people who work in institutions, however, who think institutionally; governments and wider society can also behave in ways that enable institutional thinking, practices and beliefs. A prime example of this is the recent issue which came to light about the denial of disability payments. This would never happen to people who could express themselves verbally and who had access to advocacy and support.

Denial of rights is much more likely where information is not available to people, where people are removed from the natural rhythms of a good life, connection to community, to friends and to family. The quality of any of our lives is dependent on the quality of our relationships with people who are not paid to be there, with connection and belonging in communities and with being valued as a person. Institutional thinking allows us to shut one door and open another, repeating cycles of segregation. We close some group homes, but 1,300 people aged under 65 are now living in nursing homes. We must get to the root of institutionalisation and work towards a system of rights-based support and care for people. Thankfully, some people are beginning to really understand this in Ireland and to try and move towards this way of thinking and supporting people. When that kind of support is available to people, the results are truly transformative.

Thus, what needs to change? A clear, articulated vision for community living and a fully costed plan for the next ten years is one way we can stem the tide of institutionalisation and support people, in rights-based ways, to live a life of their choosing. This plan has to include people living at home with their families right now, who should have the right to move into a home of their own. Some 1,500 people with intellectual disabilities are living with primary carers who are over 70 years of age, approximately 485 of whom are over the age of 80. These figures are from the National Federation of Voluntary Bodies, August 2022.

Without a plan, we lurch from crisis to crisis. In some circumstances, a family carer dies, and an emergency response has to be put in place. The emergency was entirely predictable. The words, "emergency" and "homes for people with intellectual disabilities", should never be put in the same sentence. This type of response leads to further trauma inflicted on the person through needing to move home without any choice, control or transition plan at one of the most difficult times of their lives. It has to change. The disability capacity review implementation plan has to be published without further delay, otherwise, we will continue to see the same cycles repeated and the legacy of institutionalisation living on.

In all of this thinking, we must include every disabled person; from people who need intensive support to access their rights, for example, people with intellectual disabilities who need enduring and intensive care and support to eat, drink and stay healthy, to people who need a small amount of support to go to work and live their lives. Our colleague at Inclusion Ireland, Ms Angela Locke-Reilly, recently said, "Human rights are not transactional". One does not get rights because of what one contributes to society in economic terms. One is a rights holder because one is human and deserves respect, love and care. One deserves a world with equal opportunity to a good life, a home of one's own, one's own front door key and a life that is one's own. I will now hand over to my colleague, Paul Alford, who will introduce himself and talk about his experience.

Mr. Paul Alford:

Thank you, Chair, for having me here. I am an advocate working with Inclusion Ireland for the past 18 years. I will talk to the committee about my experience living in institutions and what my life is like now. Between 1983 and 1990, I lived in an institution where we lived in dormitories. I did not have any choice over what to eat and what time I went to bed or got up. In 1990, I moved to a group home where I shared a room with one other person. I had to get permission to go out and let staff know where I was going. I worked in workshops and a shop. The work was hard and the pay was very bad. Then, I worked in a nursing home and I was not happy. I was not properly paid for all the work I was doing.

I talked to FÁS about getting a new job and then I talked to a social worker. In 2003, the social worker helped me to get a job in Shadowbox theatre company in Bray. It was a FÁS job and it was the first time that I got proper wages. The hours were very long, but I really enjoyed the work. My first holiday that I went on my own was to Australia. The institution I was living in did not want me to go. On 16 August 2005, I started working with Inclusion Ireland. It was my first proper job.

One day, I went to a meeting with my CEO at the time. At the meeting, I said that the institution and my family did not want me to leave. We got some help from Possibilities Plus to find my own place. It took me three years to find a place with support. In 2008, I moved out to an independent living home. I had to learn how to cook my own meals, do my washing and other things. It was the first time that I had a room on my own. I got to choose my own supporter, when I moved out. This was so important to me because, until then, I never had a choice about who was working with me. I read all the CVs and then we had interviews. I picked the person who suited me and my life.

It is not what the staff want; it is what the person wants. Staff are not here to tell you what to do. I had to learn about that, because I was so used to being told what to do. I think I am still learning about this years later. Now I work with Inclusion Ireland. I do considerable work on easy-to-read information. I also give talks on my life story and I try to help other people. It is my life and my choice. I want everyone to have that chance. Thank you for having me and for listening to me.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank you, Mr. Alford.

Ms Joanne Condon:

I am the acting national manager of the National Advocacy Service for people with disabilities. I am joined by my colleague, Ms Suzy Byrne, Dublin regional manager. The NAS, which is funded by the Citizens Information Board, CIB, provides independent, professional and free one-to-one advocacy services to adults with disabilities. We ensure that their will and preferences are heard in decisions that affect their lives. Last year, we provided more than 3,600 advocacy interventions.

Demand for our services has grown dramatically in 2022. Our waiting list figures have increased from 161 people at the start of 2022, to 250 people by year-end. While such waiting lists look rather small when compared to waiting lists for other public services, behind these numbers lie individuals who are facing significant barriers and experiencing personal suffering. This increase can be attributed to being inadequately resourced to meet the growing demand for our service, which is linked to a wide range of issues. We anticipate that the Assisted Decision-Making (Capacity) (Amendment) Act 2022, due to commence this year, will also result in significant additional demand for our services.

We also host the patient advocacy service, which is commissioned by the Department of Health. It provides independent, free, and confidential advocacy for people who wish to make complaints about their care in public acute hospitals and HSE-operated and private nursing homes.

NAS welcomes the report, The Right Home: The Housing Needs of People with Disabilities, published by CIB and the DIF. It illustrates the urgent need to develop suitable housing solutions for people with disabilities. This research is part of a wider range of research in social service areas that CIB undertakes. NAS contributed to this report and we support its recommendations and findings. However, today we want to focus the committee’s attention on giving a voice to the lived experiences of the people we support.

NAS welcomes the committee’s commitment to highlighting the importance of hastening decongregation. This is key to achieving Article 19 of the UNCRPD. Almost 90% of people living in congregated settings have an intellectual disability. A large proportion of this group communicates differently, that is, other than with words, and people in this situation may struggle to have their lived experience and their will and preferences heard. NAS has a particular remit to work with people living in residential services, specifically with those who communicate differently. Advocates understand these people’s lived experiences through the use of four internationally recognised approaches to independent advocacy. By adopting a combination of these approaches, advocates can, for example, show how people have little stimulation or social interaction in their daily routines and how their quality of life is impacted negatively as a result. NAS casework in congregated disability and mental health services suggests that such settings are where people are far more likely to have a poor quality of life and experience human rights violations. Living in a congregated setting is not as simple as living in a space with ten or more people. It is about the restrictive management of every aspect of a person’s life, which results in minimal choice about everything from what and when to eat, how to spend one’s time and money, who to live with, what time to get up and what time to go to bed. The opportunity for these adults to live an ordinary life is rarely possible. Many people we have worked with have reported feelings of loneliness, frustration and exclusion.

This is seen in Kelly’s case. Kelly has an intellectual disability and lives in a shared house in a congregated campus setting. She is an older woman and has spent her life living there. Her housemates have always been chosen for her. Living with others who have different support needs is difficult. Kelly has had her right to dignity and privacy undermined and has been the target of abuse from her peers. She has adapted by withdrawing to her room and avoiding the common living areas of her own home. Kelly requires sustained staff support to have quality experiences. However, her opportunities are limited to the time staff can spare away from people who express their needs in more obvious ways. In her day service, Kelly completes the same one or two tasks every day, largely in isolation. She says she would love to have a new job. Kelly wants to return to her pre-Covid off-campus activities, which were community-based, but this has not happened due to staffing. She has been confined to on-campus living and her mobility and health have deteriorated. Kelly has become invisible to the outer community. Kelly wants a change. She talks about wanting to return home to where she grew up. She regularly says, "I have been here too long."

Experiences like Kelly’s continue to be reported across our national network of advocates. The experience of NAS advocates while working with people living in congregated settings has been stark and distressing. The following is a small sample of advocates’ observations from their work in congregated settings. One report states:

The environment is institutional with uniformed staff, regimented mealtimes and locked doors. Access to rights is not well established.

One person asks for calls at certain times as his medication has him "sleeping for large parts of the day". It has also been reported that "Residents are threatened with a move back to campus settings from community houses if their needs change". These endemic problems significantly impact the quality of life for people in congregated settings. People may also experience restrictive clothing, no access to kitchen facilities, no access to day services, limited access to transport and being under constant supervision. This is not an exhaustive list; there are many others issues. These are abuses of human rights and these should be intolerable for anyone gathered in this room today.

NAS also wants to highlight that the number of HSE-reported active congregated settings in Ireland does not accurately reflect the full extent of the issue. Other settings exist, such as nursing homes, where large numbers of people under 65 are living together, and intentional communities where the same issues observed in traditional congregated settings persist. These settings should also be counted as congregated settings and prioritised for decongregation.

The information and lived experiences that we have shared today underline the urgent need to accelerate decongregation. Everyone involved in the process must dedicate more focused resources and planning to change people’s lived experiences. We need to recognise that the provision of additional resources to organisations like NAS, which face intense demands for services without any additional resources being provided for many years, must be considered as part of any successful implementation of decongregation.

Ms Barbara O'Connell:

I am the chief executive and co-founder of Acquired Brain Injury Ireland. My colleague, Ms Karen Foley, is head of service operations. I thank the committee for inviting us to present at this meeting. ABI Ireland provides community neurorehabilitation services across Ireland. These include in-home, centre-based and assisted living, along with case management, vocational and family support services.

My brother, Peter Bradley, acquired two brain injuries as a result of a road traffic accident and a subsequent stroke by the time he was 42. While he was capable of managing his own self-care and many aspects of day-to-day living, the only place Peter could get support was in a nursing home. Nowhere could offer him the cognitive support he needed. He was a young man in his 40s who was sleeping through every day. That was 22 years ago. ABI Ireland was set up to provide specialist support to allow people like Peter to live a full life in their own community. Two decades on, we are still fighting that fight. The Ombudsman’s Wasted Lives report states that 1,300 people under 65 are living in nursing homes, many as the result of acquiring a brain injury, which includes stroke. Although slow progress is being made to move some of these individuals out, the beds are being refilled. Nothing has been done to stop the flow of people back in.

The problem as we see it is that the rehabilitation pathway in Ireland is unclear, under-resourced, and underfunded. I am here today to address these issues but I also want to speak about solutions. The national neurorehabilitation strategy, first published in 2011, sets out an "ideal pathway" for those impacted by brain injuries and other neurological conditions. It sees survivors moving efficiently from acute hospital care, through specialist inpatient rehabilitation if needed, and then onto services like ours in the community, as well as primary care. The ideal pathway is supported by a case manager, who is a highly skilled healthcare professional and a single point of contact who provides a personalised service to the person with brain injury, and support and education to their family. The actual pathway, I am afraid, is very different. If you have a brain injury in Ireland tomorrow, here is what you can expect: you will be rushed to hospital, they will save your life and after that, it is a lottery. It is completely dependent on where you live.

For example, John acquired a brain injury as the result of a stroke when he was 40. He was lucky enough to receive acute care, inpatient rehabilitation in the National Rehabilitation Hospital, NRH, and then community-based neurorehabilitation from ABI Ireland. He was supported to move back to his own home. He has recommenced work part time and now contributes actively to his community and the economy. If John lived elsewhere, he may have spent months in the same acute hospital bed. He might be lucky enough to be admitted to the NRH but might still be returned to a regional hospital following the rehab where he could spend many months or even the rest of his life. He could be transferred directly to a nursing home, even if he had no medical or nursing requirements, or in desperation his family might take him home, where they would have no support to understand or accommodate his needs. This is because there are large pockets of the country where no experts are in place to assess what John needs to regain his independence and respond accordingly. Many areas do not even have a case manager to provide one point of contact and specialised support. There may be grants available to adapt a house but no money to pay for a rehabilitation team to support a person to live there.

I said I was here today to talk about solutions.

At Acquired Brain Injury Ireland, we have a pathway in place that could resolve many of the issues raised in Wasted Lives, and we can demonstrate that it works. What we need is for it to be made available to every brain injury survivor, regardless of where he or she lives.

To begin, we need national assessment teams, first, to look at those currently placed in nursing homes or being discharged from hospital, to set out a road map for them to move back to community living. These teams would work with case managers to prevent more and more survivors moving back into nursing homes if they do not need to be there.

To cover the country, €4 million would fund three assessment teams and a further €500,000 would have a case manager in every community healthcare organisation, CHO, area, making up a total of €4.5 million, which is so little when one considers the immediate impact this would have for so many young people and their families. It would not be the full solution, but a good solid start to the long overdue implementation of the recommendations in the Wasted Lives report. This solution would not only support the HSE to reach its targets, but provide significant value for money. It would result in fewer prolonged stays in acute hospitals, freeing up essential beds, reduce the burden of care on families and significantly reduce costs to the State.

We want the committee to hear the lived experience of those who have been inappropriately placed in a nursing home. Our friend and brain injury survivor, Mr. Brian Hogan, was due to join us today but, unfortunately, was unable to be here. Let me tell you about him. In 2009, at the age of 32, Brian, a quantity surveyor, was the victim of an unprovoked one-punch assault. He spent many months in a unit for older people and he always said that none of them could ever remember his name. In an intervention with the HSE, Brian moved back to the community to one of our assisted living rehabilitation houses near Ennis in County Clare, where he is an active member of the community and on the board of Anvers Housing Association using his quantity surveying skills. He is on a journey that proves the power and potential of rehabilitation to rebuild lives.

I would like to share with the committee some of what Brian shared with us. He said that from a nursing home to a rehabilitation house, there is no comparison - the two are completely different things. He said that rehabilitation teaches you how to get your own independence back and you are not just withering away, wasting your life somewhere where you do not belong. Brian can now see a future for himself and that is what rehabilitation has done for him. It has opened the door to the future.

Today is a welcome opportunity for us to give voice to the all-too-often forgotten about young people living in nursing homes. What we need now is urgent action to address their rehabilitation needs and to put in place a comprehensive pathway to bring them back to communities and to offer them a fuller, more independent live. This will take commitment, leadership and resources. I ask those in the room today to work with services like ours to kickstart this change and make it a reality.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms O'Connell. I call on Dr. Emer Begley to give her presentation.

Dr. Emer Begley:

I am Emer Begley and I am the director of advocacy at the Disability Federation of Ireland, DFI. I am joined by my colleague, Ríona Morris. Ríona is a policy and research officer and specialises in housing policy.

We welcome the opportunity to talk to the committee about a social policy report we published jointly with the Citizens Information Board, CIB, in December. Our report, titled The Right Home: The Housing Needs of People with Disabilities, brings together evidence from people with disabilities, from DFI staff members working in communities across the country and our membership - DFI has over 100 member organisations. It also draws on evidence from the CIB and our colleagues in the National Advocacy Service - Ms Condon has already mentioned its input into the report.

Before I outline some of the findings of the report and recommendations, I want to frame this within the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, in particular, Article 19, which states that signatories "recognize the equal right of all persons with disabilities to live in the community, with choices equal to others", and to ensure that "persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement".

The findings of our joint policy report show that we are not delivering this fundamental right to independent living in Ireland, as outlined in the UNCRPD. This is evidenced in the figures related to homelessness which show that 27% of the homeless population have a disability. It is also evident in the long waiting lists for social housing for disabled people - more than ten years for some but significantly longer than for the general population. In 2020, for example, the number of disabled people on the housing list declined at half the rate of those without disabilities, at 5% compared to 10%. If this is not proactively addressed, there is a high risk that some people could end up inappropriately living in congregated setting, such as nursing homes, as Ms O'Connell outlined, and in other institutions. We have already heard of the 1,300 people with disabilities under the age of 65 inappropriately placed in nursing homes as well as the delay in decongregation.

There is evidence of the difficulty in people wishing to adapt their existing residence as they live in the community - people who acquire a disability, have a child with a disability or have a progressing disabling condition. The housing adaptation grant has not been revised in more than ten years, despite, as we all will be aware, the substantially increased building costs. The funding available under the grant is also limited, which means modifications to the residence are quite small. It also does not include assistive technologies. A review was started by the Department of Housing, Local Government and Heritage last year and DFI made a submission to this. We are looking forward to forthcoming outcomes of this review and we may see these move forward this year.

Colleagues on the panel have referred to the Ombudsman 2021 report, Wasted Lives, and the Time to Move on from Congregated Settings report, and challenges in the implementation and roll-out of solutions to address these two issues. Our policy report also highlights similar systemic difficulties experienced by disabled people who do not currently live in congregated settings, such as those who want to live independently who are currently living with family members or those forced to live in inaccessible housing due to a lack of options. The committee may wish to refer, in particular, to chapter five of the report, which documents the lived experience through 15 case studies. These outline the human impact of the lack of equal housing options for disabled people.

A key recommendation from out policy report is that crucially there needs to be integrated working across policy areas and departmental briefs. I am speaking specifically in relation to housing, health and social care support. Ms O'Connell, in Assisted Brain Injury Ireland, ABII, has outlined the importance of health and social care pathways for people. This committee could help to drive this change. For example, it could collaborate with the committees on housing and health to hold a joint hearing to consider disability housing in the round.

Alongside decongregation processes and moving people out of nursing homes, adequate funding is also required to deliver fully-accessible housing and support provision for disabled people who are currently living in the community or who wish to live independently. Mainstreaming disability in all housing policy, including future-proofing the new housing stock under Housing for All, should include building to Universal Design++ standards, making housing not only wheelchair visitable but wheelchair liveable. The right to independent living is one of the central rights in the UNCRPD. To deliver on this right, there is a need for co-ordinated housing and social care supports. This requires cross-departmental working at a national level as I have outlined, but also at a local level, between the HSE, local authorities, voluntary organisations, housing agencies and disability groups. We have heard how people are being held up in acute care when their home care package might be ready but their home is not accessible, or vice versa.

The new national housing strategy for disabled people was published in January 2022. It was roundly welcomed and is great progress in this fundamental area, but we are still waiting on the implementation plan, which was promised in June. Without this instrumental implementation structure and monitoring processes, progress will be slow, and it is crucial that this is forthcoming in a timely manner. There are solutions and ways to move forward, but it requires leadership, resourcing and collaboration. There are opportunities across the sector. The organisations here today all work collaboratively and collectively on many different issues and DFI would certainly be in a position to support any progress in this area.

I thank the Chairperson again for the opportunity to present today.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Begley. I call Senator McGreehan first and then Deputy Tully and Senator Clonan.

Erin McGreehan (Fianna Fail)
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I thank the panel for coming this morning. I am blown away by so many of the testimonies. I sit here week in week out and then some weeks people come in front of us and wind me, if they know what I mean.

I thank Mr. Alford for coming in here and telling us his entire life story in a nutshell, eloquently and passionately, and advocating for people and standing up and being a really valuable member of Inclusion Ireland. I have learnt so much. I was in tears listening to him. His testimony was incredibly powerful.

If we recorded Mr. Alford and put what he said out to every school in the country, we would be doing a service to all our young people. They would be able to hear the lived experience and it would make them think in a completely different way about the value and the contribution. They would see that it is all about the ability. It would be a complete education for our young people. I am going to play the recording of the meeting for my children later, because it is really important that they understand. I could never articulate it in that way, so I thank Mr. Alford for doing so.

Mr. Alford talked about moving from a congregated setting and his first real job, his first real home and his independence. What about the support we all need when we move into our first jobs and our first homes? I remember ringing my mother when I was at college in Galway to get her advice. None of us is an island. Some of us need a little more help than others. Whether people have disabilities or not, they all in lots of different ways. Where was the support for Mr. Alford and how can this committee advocate to help him and others so we can ensure those supports are in the community and people know where to go? The advocacy service is here as well but how can we support that? When someone wants to move on or is trying to do so, how can they be their best advocate? Nobody can advocate for someone better than they can themselves.

I have a question for DFI but I would like to hear from Mr. Alford first, if that is okay.

Mr. Paul Alford:

Interviewing your own supporter is very important, as is choosing who you want to support you. My supporter has been with me eight years - since I moved out of institutions. I found it hard moving out of institutions. Then it took three years for me to find a place that is suitable for me to live in at a reasonable rate. Later on, I got mortgage from the credit union to pay back that loan. After that, I was given seven years to pay the mortgage. Within four and a half years, I had it paid back. Now I own the one-bed apartment in Navan.

Brian is my support person. He comes in and helps me a lot. He got me going to the bank and training in banking online. I can do that on my own now. He got me going to bingo, to Irish music and to the Navan Arch Club to play table tennis. The other thing is the park runs on Saturdays. He got me to do all that. He helps me with cooking, baking and how to keep the house clean. If I need help booking holidays, he supports me as well. I would like more people with intellectual disabilities to get out of these institutions and live a life of their own. I would like them to be able to pick their own supporter, where they want to live and who they want to live with. Then they need proper transport. The only transport we have in Navan is the buses because there are no trains. It takes two hours to get into work every day and two hours home.

Erin McGreehan (Fianna Fail)
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I thank Mr. Alford.

My question for DFI is on housing policy. Each local authority has put out its plan for the next couple of years. I was looking through the service provision plans for housing for the elderly, for people with disabilities and for affordable housing that were drawn up for some of the counties I am familiar with. It was very obvious that everything is being siloed off. There is a development earmarked "elderly-disability" and another "affordable housing", and they miles apart. Has there been an examination of those plans? Have they been proofed and looked at? Have councils even got the ability to look at this? Do they see that putting everyone in one estate, that is, into single houses in one area, is not the same as putting them in among families, neighbours and their peers? We have all this money and these plans but we are still, in a smaller way, potentially siloing people off as different when they certainly are not. They just need different types of housing in the middle of everyone else.

Dr. Emer Begley:

I thank the Senator for her question. She is so right that there is siloing and a lack of joined-up thinking on this. One of the key inputs we wanted to make is that all housing should be future-proofed and built to a universally designed plus-plus standard in order that it will be accessible for everybody. That would avoid some of the development of housing that is congregating people into developments, which is not true integration into the community.

Erin McGreehan (Fianna Fail)
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Yes.

Dr. Emer Begley:

At a local level, there are housing and disability steering groups, which are a forum in which some of the issues the Senator raises could be addressed. One of the key things is the implementation plan relating to the National Housing Strategy for Disabled People 2022-2027. It should really inform both national and local approaches to housing for people with disabilities. I am not sure if Ms Morris wants to come in on anything there.

Ms R?ona Morris:

I completely agree on the importance of disability housing not being in one area and of it being integrated within communities. As Dr. Begley was saying, it is really important that the housing strategy is driving housing delivery. Without the publication of the implementation plan, which was due last June, the implementation and monitoring structures are not in place. The housing and disability steering groups are crucial. In the context of membership, in some cases there is a need to have sufficiently senior, empowered people from the Departments with responsibility for health and housing, the local authorities, the HSE, as well as people with disabilities and housing providers, working together. It is important that all of them in every local authority are properly equipped to monitor the local plans.

Erin McGreehan (Fianna Fail)
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Ms Morris is stating that local authorities are not currently getting the resources to upskill and train people in order that their understanding might improve. Everyone on the committee will agree that we learn so much every week about what integration and inclusion are, as well as the opposite and what we do that sometimes falls into that. We learn every day. Does DFI believe the local authorities are getting those resources or even getting poked with a stick to do that?

Ms R?ona Morris:

To go along with the strategy, it is about both the resources to enable local authorities to upskill in these areas, and then there are the monitoring structures. Both elements of that are crucial.

Dr. Emer Begley:

To follow up, the area of leadership is really important at a national level. One of the comments I made was that this committee might have a meeting with the relevant Departments in order that members can look at this issue in the round. This is a local authority issue, a health issue, a housing issue and a disability issue.

Michael Moynihan (Cork North West, Fianna Fail)
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Deputy Tully is under time pressure to get to the Dáil Chamber. I ask Dr. Foley to hold her comment and we will come back to it.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I apologise for being late. I read the witnesses' statements last night and I thank them for their presentations this morning, particularly Mr. Alford. It is the lived experience that brings home what is needed and that some people are restricted from living their lives. I am aware that a sizeable amount of the disability budget every year goes towards residential services. I presume these are the wrong type of residential services in that they are congregated settings or congregated-type settings. Even if there may not be more that ten residents, they are still congregated-type settings where the person does not get the choice of who they live with or why they want to live there. That money, I presume, could be better spent but there needs to be a proper plan for it.

I attended a conference recently where it was pointed out that the cost of designing a house to ensure it is universally designed to ++ standards is €13,000 on average, although it depends on the size of the house and so on, whereas it costs €50,000 to adapt a house. That brings home that we need to build a lot more houses, in the first instance, and a lot more with universal design. What percentage of new houses should be built to universal design? Ideally, it should be all houses because everybody gets older and people may develop mobility issues so it would make sense to do so. What would be a good starting point?

Independent living is not just about a person's house but also about all the other supports, transport and access to education and employment. Many people will say it is about access to supports, which, in many cases, is a personal assistant, PA. I find working with people who are applying for a PA that it is difficult to access. There are not enough hours in the first place, but if someone is assessed by the HSE and granted hours, to interview someone and be able to employ that person is complicated. That whole system needs to be streamlined. Will the witnesses comment on that? It is about getting as many people as possible into appropriate housing but with the proper supports.

The cost of keeping people in nursing homes or congregated settings has to be excessive. Is there an overall figure for that cost? It is disappointing that while people are being moved out of nursing homes, others are being moved into them. The figure is not going down. We have heard about these issues so many times but we cannot discuss them enough. The committee should be pushing for the implementation plan for the housing strategy for disabled people because we are already a year into that and the plan has not even been produced. I thank the witnesses again.

Dr. Karen Foley:

The point I will make may not fully relate to the Deputy's comments but adds to what Mr. Alford put so eloquently. When we talk about case management and support, it really is that wraparound support. Each person's support needs are going to be different. When the case management model is in place, not just for people with brain injury but for people with any support needs, the person is able to identify the needs for that individual and what is meaningful for them and consider what life looked like prior to living in that environment, what they want life to look like and how to get there. That should include formal, as in paid, supports if necessary and informal supports like family, friends and other informal supports the person will have in the community. It is important to acknowledge that for any individual to come out of any institutional setting where there is institutional thinking, he or she needs support to transition because the things we take for granted and do every day are now scary for that person. People have not used public transport or money, chosen their own clothes, taken their own medication or tried to shower, dress and be somewhere on time - all the things we do every day - for a long time. People need individualised support to try to navigate that journey. In the absence of that sort of support structure, we hear what happens from people like Mr. Alford, whose story echoes so many stories I have heard sitting in nursing homes over years. I had a tear in my eye listening to him, even though I have heard so many of them. It echoed the need for someone to understand him, what his life should look like and what he needed, including meaningful activity and support to link him in with all the services, supports and community activities, not just disability-focused ones but mainstream ones the Deputy and I would access.

The other important point to emphasise, which Deputy Tully touched on, is that accessible housing is not just about a structure. In conjunction with Anvers Housing Association, we recently linked in with many individuals with brain injury who access our housing or are supported by us and live in their own homes. We asked them to tell us what was important in terms of their housing needs. We heard strong responses around accessibility and so on as well as on access to community. Putting an accessible house in the middle of nowhere creates cut-off exclusion. People might have a better quality of life than they would in the bigger congregated settings but they do not have access to meaningful activities and opportunities in education and employment or to make friends, pursue hobbies and so on, in other words, all the normal activities we would all look for if we were looking for housing in the morning.

I personally and our organisation try to support people to access housing from councils and so on. Sometimes it can feel as if the priorities of the council are not aligned with the priorities of health. The councils are under significant pressure to house people. It feels like a conflict between those two pillars.

On the point around staffing, it is extremely difficult to get staffing at the moment. There is a pay parity issue between section 39 organisations and HSE section 38 organisations. It is difficult to recruit. The inability to recruit is made worse by the lack of pay parity between the organisations. There can be a significant difference in pay. Other issues with terms and conditions are also coming to the fore. If we look at that as a whole, it will enable the sector to support individuals who want individual packages to come out into the community. A whole-of-government response is needed to achieve all of those things.

Ms Derval McDonagh:

I echo what Dr. Foley said. If we are to move on fully from institutionalisation and institutional thinking, it is a move from a system to a person-led response. We are a long way off that, although there are pockets of it happening around the country and there are people who have personalised budgets and are in control of their own lives. Mr. Alford's story speaks of that. We are a long way off that but we have to edge further and further towards it. If we do not take that seriously and do that well, we will end up creating group responses to issues that are deeply personal and create more institutions. They might be smaller and look a bit nicer but there will still be the same kind of institutional thinking within them, where people do not have real choice or control over their lives. We have to push that boat and move towards more individualised responses to people, looking at what people want in their lives and trying to build the services around them. That includes everybody, from someone who needs a couple of hours of PA support every week to live a good life to those who need around-the-clock support to access their rights. That should include everybody. Sometimes people feel very left out of that picture. They see personalised budgets as only being for people who are going to go into paid employment or who might only need a certain amount of support. That has to include people with much higher support needs as well, if we are to really look at unpicking institutionalisation. There are a lot of disability activists around the country and there is a slogan about getting a life, not a service. Our supports should be enabling that for people and supporting them to have a good life. Dr. Foley mentioned access to family, friends and community in whatever way people choose to do that. That is how we unpick institutionalisation and institutional thinking. We have to have vision around that. Dr. Begley mentioned leadership as a core element of any plan. We need to see a vision and we need to see government, politicians and society pushing for that.

Ms Barbara O'Connell:

I would like to highlight the group of people who are acquiring a disability today, in other words, the person who is in a road traffic accident or who has a stroke, brain injury or neurological condition.

These are the future people with disabilities and we must put them front and centre as well. They need rehabilitation services so that they are not disabled and we are enabling them to become enabled to take control and power over their own lives. We have proven time and again that specialist intervention with a clinical background and an individualised approach can get someone from the point of a nursing home back to work. It is that stark. We have seen those changes, yet this cohort of new disabled people are actively being institutionalised. We should be looking at them from the acute hospital perspective all the way down.

I ask that rehabilitation be resourced. Rehabilitation is twofold - taking the people who need to be enabled and empowered while also taking the new cohort who are coming to us with new disabilities and ensuring they do not come back to us in ten years' time and we have to start enabling them again. Rehabilitation works. The sooner you get to someone and the more support you get that person, the more enabled he or she is. Many people return to work and live meaningful lives independently with supports. On a basic level, this is much more cost effective and prevents institutionalisation from happening time and again.

Dr. Emer Begley:

I will respond to the Deputy's question on percentage targets. The housing strategy has a target of 50% universally designed housing within local authority new builds, but there are three tiers of universal design and the strategy is at the first tier, not the plus plus tier. This would make the homes wheelchair visitable but not wheelchair livable. It does not include private accommodation either. In that regard, an issue I have not flagged yet is the need for incentives for private landlords. Many disabled people are accessing accommodation through private landlords, so incentives for landlords to make changes to their properties to make them accessible for people with disabilities are key.

The Deputy's remarks about retrofitting being far more expensive than future proofing resonated with me. Disability should be included in all future housing policy.

Ms Suzy Byrne:

It is important for the committee to be aware of how vast this issue is. There are 10,000 people living in designated settings that are registered with HIQA. Of those, a quarter are living in what are deemed to be large units with populations of between six and ten people. There are also people living in settings that are not inspected by HIQA and are not deemed congregated settings, including mental health community hostels for people leaving acute hospital settings. These are not regulated by HIQA or the Mental Health Commission.

Nursing homes have been mentioned. Advocates working with NAS have varied caseloads. They deal with people living in congregated settings whose rights are restricted. For some of those - unfortunately, it is a very small number - transition planning might be in place to move them into the community. I have been involved in advocacy since 2007. In 2011, the Time to Move on from Congregated Settings report was published. There was a plan to move people in congregated settings into their own homes. That plan has not been completed. There are still people living in campus-style settings or being admitted to nursing homes despite more recent recommendations in reports like that of the Ombudsman.

Due to their caseloads, advocates will see people in acute hospital settings for whom nursing home placements are still being proposed even though they do not have a nursing need. We will also see people with disabilities from congregated settings in acute hospitals because a congregated setting says it is no longer able to meet their needs even though they have only ever lived in a congregated setting. Such people are ending up in acute hospitals and looking for nursing home placements. We are not even future-proofing for the needs of people who are growing older in congregated settings in order for them to have appropriate supports, have their rights respected and have the hope of moving into their own homes with their own staff and with choices about what to do.

During Covid, people living in congregated settings had a different experience. Many do not want to return to how life was before Covid because they are now experiencing slightly more choice. That might sound strange, given the restricted pandemic situation, but some people got one-to-one staff support during Covid that they did not get beforehand. They do not want to return to having to go to a day centre and having no choice in their lives.

The issue is about much more than housing. It is about how money is spent, how plans are made and how those are followed up. There needs to be more co-ordination. Advocates spend a great deal of time speaking to people in service providers, health agencies and housing providers and trying to bring all of that information together in order to support people in making decisions. When someone comes to us and says he or she wants to move out over being unhappy with where he or she is living, it can take many years. This week, one of the people I have been working with is finally moving 12 years after first telling me that he did not want to live where he was anymore. He is now moving into his own home with his own staff and transport. That was a very long journey. Sadly, journeys are rare. There are still people entering congregated settings through emergency placements or because there is nowhere else for them.

We must also remember the large number of people living in their family homes. As Ms McDonagh mentioned, they have older parents. They are people who do not come into the discussion on where, how and with whom they will live and what choice they will have in that regard.

Emer Higgins (Dublin Mid West, Fine Gael)
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I apologise for being late, but I was at the housing committee next door. There is a great deal of synergy between it and this discussion.

I thank the witnesses for attending. It is people's lived experience and the experience of organisations working on the ground that inform this committee. I wish to put on the record my thanks for, and recognition of, the work of Peamount Healthcare and Stewarts Care in my constituency. They have helped many people to move into and live successfully in supported independent accommodation within communities. They have also used Government funding to invest in upgrading their living settings to make them fit for today's standards in terms of congregation.

I was struck by what Ms O'Connell said about people who acquired disabilities. A young man in my community acquired a life-changing injury after a mountain biking accident. He is one of many people who is unnecessarily still in hospital or rehab and going from one to the other without making progress in their recovery because councils do not have fully accessible accommodation for them to move into. They are taking up much-needed beds in hospital. More importantly, they are unnecessarily going backwards in their journeys and their lives are on pause for longer than they need to be. I thank Acquired Brain Injury Ireland for its work with people in this regard, but the Government and local authorities must face up to this reality and invest in providing accommodation to younger people in such situations as well as those who have had disabilities their whole lives and need to move into supported living.

I was at the Sallymills development in Clondalkin this week. It will open in the coming weeks and provide 85 apartments in the heart of Clondalkin. Through Clúid, these apartments will be step-down accommodation for over-55s. It is plus plus design and is fully accessible. It was incredible to see. The development primarily consists of fabulous one-bedroom apartments with beautiful views of the Clondalkin round tower and is in the centre of the village. There are also some two-bedroom apartments so that the carers of those who require 24-7 care can be accommodated on site. The development was fantastic to see. It is being built by the Europlan Group in collaboration with Clúid and South Dublin County Council. I understand the Europlan Group is looking to do something similar in Cork.

This is the way forward, but such developments should not be limited to over-55s. We need to provide that level of accommodation to younger people who want to have a life and not a service, to paraphrase Ms McDonagh. We need to invest in that.

I would be very much encouraged to hear our guests' views on that and how we make that a reality and future-proof both our planning system and the resources we are allocating. When one thinks of the hospital bed which is allocated to somebody who does not need it and we have a vacant property which is allocated to nobody, when people could be transforming their lives if they had an opportunity; how do we unlock that service? I am keen to hear our guests' expert advice on that?

Michael Moynihan (Cork North West, Fianna Fail)
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Who would like to take that question first? I call on Ms O'Connell.

Ms Barbara O'Connell:

I will give the Deputy an example of the model that Acquired Brain Injury Ireland have in partnership with the Anvers Housing Association. This is where people have moved from hospital to an assisted living setting of four people, where they have individualised rehabilitation plans. None of the four do the same thing every day, they do whatever it is they need to do. As their level of independence increases, they then move into another house which is either shared with another person or on their own. We have managed to put in a transitionary pathway if a person is not able to live on one’s own, which could be for social reasons and may not necessarily be because that the person cannot physically live on his or her own. The person may be aphasic or may be highly vulnerable on his or her own. The whole idea would be that one could learn, strategise and develop resources in order that one could then move in.

That is an example with models we could use. We do not need to reinvent the wheel, when one has organisations like Clúid Housing. We have pockets where we can see this succeed and the idea is to try to share this across the Departments, to say this is where it works and that here is an example of how we can get people like the manager, who has talked about having a transitionary, intermediate place where he could go and learn to be more independent and can then move on to a place he can be more independent. That is a model we have in place with the housing association.

Speaking on behalf of that housing association, we find that when we are going for money to the Department of the Environment, Climate and Communications, the priority is for families. The committee can see the competing elements. Unfortunately, people with disabilities fall to the bottom. That is our experience and we are having to re-advocate. I know that Anvers Housing Association is one of the housing associations which is responding, in that it is offering housing with support options so that when it builds the house, it comes with acquired brain injury specialist support. One is, therefore, getting both together which is quite unique. Sometimes one gets the building, with no support. That is an example of a model which could be rolled out and increased.

Dr. Emer Begley:

The Deputy has raised a very important point around the social housing waiting lists. I had highlighted in my statement that the waiting list for disabled people is moving at a slower rate than those of the non-disabled population. There are many reasons for that and one of them is the housing crisis and the prioritisation of others where people with disabilities are falling down. It is also about the accessibility of the accommodation which is being offered. We are hearing instances where people are taking accommodation because they do not feel that they have a choice. It is actually not accessible for them and they are then going back on the housing waiting list, having been given a place to live.

It is important to think of the additional needs people may have. The example of the two-bedroom accommodation is very important because people may not take a house that is offered to them because they need an additional accommodation space to facilitate the holistic support infrastructure they need. There is a housing crisis which we are aware of, but for people with disabilities, the issue is finding accommodation that is suitable, accessible and affordable.

Ms Joanne Condon:

I would like to draw the attention of the committee to a cohort of people. We can talk about making more housing, supports and healthcare available but it is important that we stop for a second and think about those who are most marginalised and who are currently in congregated settings. We have a particular remit to people who communicate in a different way and who live in some institutions where they will not get the support to access advocacy to enable them to exercise their rights or to even understand them in the first place, never mind being able to articulate what it is they need.

Therefore, besides talking about housing, healthcare and social care, which are all essential, if we do not offer the necessary supports such as advocacy and other types of support like that to people who have no natural supports and who are living in settings where many people are not going to offer them any level of support around realising their rights or accessing the type of life that Ms McDonagh and Mr. Alford have described, the question is how are we then going to connect one to the other. Waiting lists for advocacy is also a significant concern. We run the risk of those people being even more marginalised where their voices are lost. How will they be even recognised as people who have needs that should be met in these ways? They need somebody to do that for them.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Condon and call on Mr. Alford.

Mr. Paul Alford:

I want to say that because there is a housing crisis here in Ireland, people should therefore be told where they are on the list. They are never told the place they have on the list or how long it will take for them to get a house. We need more people to be taken out of these institutions in order to live a good life where they will have their own support and a choice of who they want to live with.

The Government said approximately 12 years ago that it was going to move people out of the congregated settings, the institutions and the nursing homes. We have not seen that. Why say you will do something and then not keep to your word and listen to the disabled people? We need more people to listen to disabled people and to take what they want on board. What is happening is not what they want. It is our choices and our voices at the end of the day.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Alford very much. I call our next speaker, Senator Clonan.

Tom Clonan (Independent)
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I thank our guests or coming in here today. At the outset, I wish to say I have only recently arrived here but I am also coming from a lived experience that is quite narrow. My understanding of our community and of our shared experience is predicated on just our own family experience. I have learned a great deal since I have come in here and through the committee. I very much appreciate and thank all of the organisations for all of the work they do because with regard to so many of the concerns that impact people like us, it is great to know that they are dealing with them in a very proactive way.

I apologise to Mr. Alford as I had to leave earlier to go to another meeting. I am very sorry that I missed his contribution but I will listen back to it.

I refer to some of the figures given by Ms McDonagh, where she began by talking about the number of people with intellectual disabilities, ID, living with parents over the age of 70, and to those then over 80 years of age. She mentioned a figure, I believe, of 1,365 of people living in nursing homes who are inappropriately accommodated in that setting.

I remember a couple of years ago, where the DFI had a public awareness campaign and the figure then was roughly similar. Is that a static figure or is that figure growing?

My second question about the people in the nursing home setting is to ask if they are migrating and, if so, what kind of settings are they migrating to? This could be people who find themselves in a nursing home setting subsequent to acquiring a brain injury or some other life event that puts them into that space or it could be people who were living with an elderly parent, who goes into crisis and suddenly finds him or herself being shunted into that situation.

When people were here and spoke about the time-to-move-on process; I asked them where people were migrating to, they said that they did not map that and did not know. I suspect that many are being returned to elderly parents, are becoming homeless or are being put into inappropriate settings. I would be interested to know the answer to that question.

On the question of having a life and not having service; I personally cannot get answers to those questions in respect of my own family situation. To put that in the context of what we are talking about today, I spoke to a senior social worker in the HSE who has responsibility for the disability services. She asked whether my son had siblings and I said he does. I was asked then did he have a sister to which I replied he did. I was asked then what I was worried about as she could look after him after I died. That engagement was just before Covid-19 struck in 2019. This did not happen in 1870. That was the thinking. I do not believe that that person was trying to be unkind or uncharitable but was genuinely trying to reassure me that that was probably what was going to happen. In that context, I have been receiving a tsunami of contacts from people who are in crisis.

In the past week alone, I have been contacted by about eight elderly parents of adult children with Down's syndrome for whom there is no respite or setting. There is nothing for them. They are at home, in absolute crisis. I have had representations from two young men with acquired brain injuries. One of them can no longer work as a result of his injury, and the family home is in danger. His relationship has broken down and he is homeless. The other is a younger guy who is effectively homeless and using the last of his savings. He is staying in Airbnb accommodation, he cannot get support and he is terrified he is going to end up on the streets. He takes a lot of medications and he is afraid that if he is put into a homelessness hostel, those medications will be stolen for sale.

On the one hand, quantitatively, there seems to have been an improvement in terms of policies, with great aspirational documents, but, qualitatively, in the lived experience, I get the sense things are getting worse. A demographic dynamic is at play. In 2004, the population of Ireland was 4 million, whereas it is now 5 million plus. Ms O’Connell talked about preparing for the inevitable numbers of people who will acquire injury, including everyone who is attending this meeting or watching it online. Is the situation, qualitatively on the ground, getting worse? Are we in crisis or is it getting better? Is there a jurisdiction, within the European Union or elsewhere, that is a reasonably good model for addressing all the complex issues we have identified here?

Ms Joanne Condon:

On whether things are getting worse, one figure we have seen in our casework is that up to 60% of the advocacy cases we are currently working on have between two and seven advocacy issues per case. That is quite a growth within the period during which we have worked over recent years, so "Yes" is the answer to the question from our perspective of what we are seeing in our casework. The complexity of the issues people are facing is multifaceted. For people to try to navigate the complexity of the system is one thing, but due to multiple issues in many types of services and many different interactions with various Departments, it is absolutely impossible for many of those we support to navigate that without adequate support. This goes back to the point about those who cannot access the support they need to navigate the system. That, in itself, is very disempowering for people.

Ms Derval McDonagh:

I might also speak to the question about whether things are getting worse. I certainly feel we have been going deeper into crisis in recent years. There is some evidence for that. According the figures from the National Federation of Voluntary Service Providers that I outlined earlier, there are now more people living with elderly carers than was the case two years ago. The numbers are increasing and we see the reasons for that. We love a strategy in Ireland and we are great at writing strategic plans, but we are not great at implementing any of them. We also love pilot projects that never get system-wide change going. The strategies we have are relatively good and the strategy for disabled people was broadly welcomed by the community when it was published, but we have not seen the implementation plan for it. What we need is a year-on-year, fully costed, proper plan whereby we can see progress.

Right now, we are lurching from crisis to crisis, and the HSE and other providers are dealing with an annual budget. We cannot support people with an annual budget. They have to be supported over time, in ways that are meaningful and rights-based, and that cannot be done in an emergency. We see all the time that those elderly carers are terrified about what will happen to their son or daughter, with the person themselves having no plan for their future. When I spoke about institutionalisation and institutional thinking, the Senator mentioned a conversation he had with a social worker. That is a prime example of institutional thinking. We would never say to any other family member, such as a non-disabled sibling, that we were sure they were going to continue living with their brother and sister for the rest of their life, with no plan for them, and that they will never get a house of their own. That would just never happen.

Tom Clonan (Independent)
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My daughter is 18 years old. She is a fun-loving criminal. There is so much anxiety, and I am just speaking from our experience. There is a constant failure of the home care package and my son has very few supports, so he has now internalised the fact he cannot expect independence. In his own expectations, he has internalised the idea he will always have to depend on a family member and that services do not work. It is so profound on so many levels. The anxiety it provokes is like a panic. The overwhelming levels of unmet need at every level, whether the child and adolescent mental health services, disability supports, the children’s disability network teams, CDNTs, or the progressing disability services programme. It is all failure. There is a universal failure, across the board. Is this unique to Ireland? Are we different from other jurisdictions in the way we relate to disability? I cannot get my head around it.

Ms Derval McDonagh:

Our legislation and policy do not help us, to call a spade a spade. Under the Disability Act, people have a right to an assessment of their needs but absolutely no right to services. That is a major issue in Ireland. Nevertheless, the plan is the big thing we need to see for people. The Senator mentioned the 1,300 people in nursing homes and asked whether that figure is static. It seems to have been around the same number in recent years but I do not know whether they are the same people. Some people leave and come back in through another door. A plan for that is in place and a group is looking to address it, but even if we look at what was budgeted for in budget 2022 for this considerable issue, it would take 30 years for 1,300 people to move out under that budget. That is 30 years of more wasted lives.

We need to take that seriously. A fully costed plan is needed, and it needs to be rights-compliant and focused on individuals and how they want to live their lives. Some people want to stay living at home with their families for the rest of their lives. That is absolutely fine as long as families get the support and the individuals get the support to do that and make that decision. Right now, the options are so limited and it all comes down to responding in a crisis, when it is too late and we are inflicting further trauma on people. People are waiting for that crisis. They are living their whole lives waiting for that crisis to happen. That is no way to live.

Dr. Karen Foley:

In the HSE's reports on how it has met the targets, whether that is 18 in the first year and up to 69, we can see that people are not moving out of nursing homes. The targets are not being met and people are not moving on. A small number may be able to move on, but anyone who is coming from that sort of a setting, where there is 24-7 support with people there for any length of time, is not going to be able to move to an unsupported environment because they will need that support to wane over time in order that they can be as independent as possible. They need to move on to something such as our services, which are assisted living, or back to family with significant support packages. Few people get to move on and, as members will have heard during this meeting, it takes a long time. I would hate to have an accident on my way home today and think that will be my reality for however long.

The system, by which I mean the way in which the HSE is able to plan ahead, does not enable the HSE not to be reactive. In the case of all the individuals who are at home being supported by ageing parents, who we know will at some point be unable to support those individuals anymore, we are not even offering them the opportunity to access rehabilitation in their homes in order to negate future need.

The vast majority of people only get access to a personal assistant-type support, which is a service where someone comes in provides supports. The person may, by accident, have an opportunity to practise skills and gain independence in areas. We do not, as a standard, systemic approach, offer the opportunity for enablement for any age group across the life span. The people who get access to rehabilitation in the community are in the vast minority. We will have those crisis situations because we are not re-enabling people. We are creating dependence, as opposed to creating independence. If we can change the system now, we can reduce what is going to come in the future but if we keep going as we are going, we have all this pent-up demand and created dependence, and will be in a situation where we can only react and not plan forward.

Dr. Emer Begley:

To follow up on Dr. Foley's point on nursing homes, work is under way in the HSE to address this. There is a national group and a reference group which Dr. Foley is on. The numbers are static but involve slightly different people. Small numbers of people are moving out of nursing homes but people continuously move into nursing homes. The reason for that is that they may be in an acute hospital, then when they try to move out of the acute hospital, they are presented with a nursing home place as a short-term option and end up there for longer because there is no place for them to move on to. The Disability Federation of Ireland is concerned about the slow progress of work on this. One key thing is getting accurate figures about the number of people under 65 in nursing homes. The figure of 1,300 is based on those signed up to the fair deal scheme but many people in nursing homes are not on the fair deal scheme. There is a national survey of nursing homes to get accurate figures but there are delays with it and progress is extremely slow. While attention has been given to this, progress is slow and people under 65 are still going into nursing homes, which is crucial.

The other issue the Senator raised was about the lack of integration across services. We have spoken at the committee about the lack of integration across housing, disability, health and advocacy in local authorities. There is an issue with integration across the different divisions in the health services. The Senator mentioned the progressing disability services, PDS, programme for children and the child and adolescent mental health services, CAMHS. We have seen in parts of the country that children can be on one care pathway, involving PDS, and may need CAMHS, but the services are not talking to each other. It depends on the pathway on which people end up but there is no integration across the different care divisions, which means that families and individuals have to navigate an extremely complex system. To echo what Ms Condon and Ms Byrne have said, advocacy and case management, which ABII has mentioned, support people to navigate a complex system. Without that, people can get lost.

Ms Barbara O'Connell:

The Senator asked if there is a European model. I would like to say that we have good models in Ireland that work but they are just not resourced and are underfunded. For example, going back to the nursing home issue, we have case managers in place. We have done a study in which we have saved €3.5 million for the HSE by keeping people out of nursing homes simply because a specialist case manager has met people coming from acute hospitals and has managed them all the way to the community. The case managers have realised that some of the reasons people are going into a nursing home could be accommodated in the community and have gone about resourcing those supports to help those people. Going back to the case management model where there is a resource specialist, not just for brain injury but for any disability, there would be just one point of contact with that level of expertise. I believe we have the models. They are just not resourced and they are not everywhere. We talked about John, who could get a full service wherever he lived. John is a real person. Other people just cannot get any service depending on where they live.

Tom Clonan (Independent)
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Where they live.

Ms Barbara O'Connell:

Yes.

Tom Clonan (Independent)
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I thank the witnesses.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank everyone for their contribution. Without people like them advocating as they do for people with disabilities, I shudder to think of where we would be. Article 19 of the UNCRPD gives equal rights for people with disabilities to live in communities with choice equal to others. That is a principle that we all stand by. The commitment in the programme for Government to eliminating the practice of placing people with disabilities in congregated settings was mentioned earlier. We need full implementation of that but we have not even signed up to the optional protocol. It has not been ratified, which is a big hindrance. I would love to hear what the witnesses think about that. We should be pushing the Government to sign up to that. It is an indicator of not being properly committed to people with disabilities.

The witnesses mentioned that one in four homeless people have a disability. I assume that when one looks at the housing waiting lists, the numbers would be comparable. I have experienced a lot with people on the housing waiting lists who have disabilities, whether intellectual or physical disabilities. Dealing with local authorities is appalling and the waiting lists and time taken are horrendous. I did not think about what was said earlier about private landlords. I do not know how that is engaged with. That is probably a difficult area. If someone with a disability has a private landlord, I think engagement would be difficult. I would love to hear people's thoughts on that.

There is an obvious issue with people getting adaptations from local authorities. With the cost of living, the prices for adaptations need to change dramatically. Apart from that, what people receiving disability allowance are getting needs to be looked at carefully. With the way the cost of living has gone, it is not possible to sustain that.

What Mr. Alford said was interesting. It upset me to listen to how long it took him to get from A to B. I found all the different obstacles he faced upsetting. I would love to hear more about how he got there. I have read what he has said but it is disturbing to see that people with disabilities are taking so long to get there.

On acquired brain injuries, I heard what the witnesses said about what funding would be required to cover assessment teams and a case manager in each CHO area. Some €4 million or €5 million seems like a small sum. I do not know what impact this is having on the Government. This committee should certainly be pushing for it. We probably will push and make an argument about that. I have experience of dealing with people with brain injuries. It is quite difficult for them to get supports, apply for housing or try to be independent. Will the witnesses elaborate further on how that can be done? The number of places across the country to help people like that is very limited and that needs to change.

We need a rights-based approach to support and care for people with disabilities. Is something missing in what we are all trying to do? Is there something further that we need to do in making an argument about different areas? Has anyone any ideas of how we can go further in making cases?

We spoke about nursing homes. We have different housing complexes like Housing Association for Integrated Living, HAIL, housing, which looks after people with mental health difficulties. What are the witnesses' thoughts about these type of complexes, which are dedicated and have supports on hand? Does that take a bit of individuality away from people? I do not know. Could the witnesses give us their thoughts on that?

Mr. Paul Alford:

Who do you go to when you have no family and cannot speak for yourself? Who will help you? Who do you go to for support and help when everyone in your family passes away and there is nobody left? These are the questions people with disabilities should ask themselves and the Government.

Ms Suzy Byrne:

NAS has a lot of experience in supporting people in the area of homelessness. There are people who acquire a disability and become homeless - possibly because of a brain injury or a mental health difficulty. From 2015 and 2016 onwards in particular, people with intellectual disabilities or autism in homeless services became known to us. This was new for homeless services. The numbers were definitely on the increase. One of the difficulties is the fact that the criteria for receiving support as a disabled person operated by the HSE state that somebody must have a moderate or profound intellectual disability before he or she can be supported through HSE-funded services, so people in homeless services who might be identified as having a mild intellectual disability are unable to get and sustain their own tenancies and as a result, are staying in quite acute homeless services with populations of people who might cause them great distress in terms of not having quiet spaces, staff who are skilled in how to support them and all the rights restrictions such as not having funds or access to appropriate therapeutic supports. All those things were coming to bear in respect of the inquiries received by NAS. Homeless agencies were saying they did not know what to do. Disability services are seeing people to whom they might traditionally have provided residential support but who are now in homeless agencies, living in emergency accommodation and less likely to get private or even public rented accommodation.

Regarding private landlords, this is not just about physical access in private tenancies, which is a significant issue involving as it does finding somewhere that is physically accessible. While many landlords might agree to adaptations being done temporarily, they are looking for money to put the property back to the way it was before the tenancy began.

We are also seeing congregated settings moving people into private tenancies because of the lack of public housing. In the Time to Move On from Congregated Settings reports and the plans concerning decongregation, the agencies in disability services were looking to private landlords to support people to move into properties but this offered no security of tenure. That involved year-to-year tenancies, the fact rents might increase and whether people were entitled to HAP and getting it and all that joined-up thinking. People were moving from what they or other people might have regarded as secure accommodation albeit that they had no choice, their rights were restricted and they were living in unsuitable and inappropriate places. They were moving to private tenancies where they may have had a notice to quit given to them. There was also the question of whether their supports would be able to find them somewhere else to move to. If they took a HAP tenancy, they might only be entitled to a transfer to public housing rather than remaining on the housing list for something that might be more suitable and of high quality and a long-term tenancy nature. All these issues were coming up.

Each year in its service plan, the HSE announces a number of people it thinks it will be able to support to move from congregated settings to the community. The target in 2021 was 144 but it was not reached. I think the number was 135. I do not have the figure to hand but based on those figures, people were more likely to die in congregated setting than to move out, which is quite stark. The numbers of people to move out of congregated settings being set are so low but they are not even being reached and many people are passing away without the opportunity to move on into their lives of their own choosing.

Ms Barbara O'Connell:

I will start with people in nursing homes. When you bring it down to an individual level, nursing homes are set up to care, so it is a case of them dressing you regardless of whether you can dress yourself or not. Even if I can pull on my own clothes, they will be put on for me. My tea will be put in front of me. I will not have the opportunity to boil a kettle and make my own cup of tea. There is a level of perpetual dependence in such a setting that must be undone when you take somebody out of it.

The reason people like being in a nursing home setting is often because they have medical and nursing needs. We assessed somebody in a nursing home who was being fed his dinner and was being dressed. We took him out and he went to the local pub for a pint and had no problem drinking the pint of Guinness. He had no problem putting it to his own mouth and drinking it. You realised that this man could drink himself. Why was this? It was because he was in a normal setting and did what he normally needed to do. That was the opening key for asking what else he could do. This particular gentleman moved out of that nursing home and started washing and dressing himself independently and going independently going into the community. He had no problem going to the pub for his pint. He needed the support of an assisted living residence in which he lived with three other people but he lived a completely full life. The key was the fact that somebody at some point said "lets see what you can do with that drink yourself". There is something about the environment in which you live that enables you to do more.

The example I have regarding housing is where the houses provided by Anvers Housing Association provides are in a normal residential community. There is one house where four of them lived and there are two houses scattered within the same locality where people moved to from that house. They are integrated into the community and are part of the residents' association. They are no different from anybody else and it is a model that really works. Going back to my point, it is just not replicated. You cannot get it everywhere. Obviously, the housing crisis is not necessarily helping that but we know what to do. We must look at the environment in which people live in order to enable them.

It goes back to the enablement model and not creating that dependency. It also involves not putting so many one-bedroom apartments together. They should be integrated as much as possible. If you have universal design, that happens automatically. If my rooms are big enough and accessible, I can buy a house anywhere, I can live anywhere and there is much more flexibility.

The committee spoke about implementation strategies. There is a brilliant neuro-rehabilitation strategy with a case management pathway so there is one point of contact that takes the person all the way along. It can be replicated in other areas for other types of people but if we could just get it funded and implemented, it would be significant. The strategies have been consultative and lay out really good pathways but they are not being implemented.

Ms R?ona Morris:

I want to back up the point everyone else has made. We were asked about the housing adaptation grants. The Deputy is right that the maximum grant amount is significantly below current building costs. It has not risen in about ten years, and the maximum grant is €30,000. With current building costs that really does not get people very far. We need to look at doubling that to at least €60,000. There is an ongoing review into the housing adaptation grants by the Department of housing. That started last year, and ourselves and a number of others made submissions into that. We have not seen the outcome of the review yet. We are waiting for that in either quarter 1 or quarter 2 this year. We understand the Department is considering the recommendations coming from that. I think it is important to increase the funding for the grants. Housing adaptation grants are a really important mechanism for keeping people in the their own homes following an acquired disability or a disability progressing. The maximum amount needs to be increased. The income thresholds can also be a real issue. We have the Indecon report on additional costs of disability, where there is evidence of additional costs of €270 per week. That needs to be reflected across the board. It needs to be reflected in housing policy and with the housing adaptation grants. That needs to be considered when the income threshold is looked at. Another issue is that we need to assess the income of the person with the disability only, and not that of a partner or a parent. A particular issue at the moment is that with the housing crisis there are often adult siblings living at home. Their income is assessed too. That can put a lot of people over the threshold.

Seán Canney (Galway East, Independent)
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I thank all of the witnesses. It has been enlightening. I was listening in the office to the presentations. I was struck by a few things that I have probably been saying myself, but not saying loud enough. A strategy is driven by an implementation plan, and if you do not have implementation plans you are in trouble because all you have is paper. I know the HSE is still putting young people into nursing homes because it does not have any other place to accommodate them. I know of a case where a young person was going to be located in a setting probably 90 minutes away from their parents, because there is nothing in Galway to help with accommodation. I know of another young man with an acquired brain injury and he is in a nursing home for the past six or seven years. Those are two examples.

Senator Clonan asked if things are getting better or worse. What is happening is that things are getting more complicated. There are more rules, regulations and policy documents to be fulfilled. Those who are genuinely trying to help people are finding there is a huge blockage of paperwork and bureaucracy. One quick example is where a house has to be adapted or a new house built to facilitate someone with a disability or an acquired injury. With the housing adaptation grant, the income of somebody else living in the house, like the parents, is taken into account. They may then not qualify for a grant. As Ms Morris has said, that is against what we are trying to do, which is adapt a house for the specific needs of a particular individual.

This also comes back to individualisation. I come across cases, and I know that no two cases are the same in terms of their needs. Where someone has an acquired injury, or if parents have a child with a disability, I find that the biggest problem is they do not know where to go. They are lost in a fog and do not know where to go, or how to try and find somebody who will help them. Oftentimes they arrive into our constituency office stressed out and emotional. They cannot even think straight because they are so tied up in all of this.

I know Mr. Alford has come out of the congregated setting. What are his priorities for other people coming out in terms of assistance they need? I would also like to know more about somebody with an acquired injury who gets rehab and is then sent home or somewhere else. There is no follow-up, as I have seen in the presentation. What can be done about that?

We also have to put pressure on to get the implementation plan in place for the national housing strategy for disabled people. Looking back at the past 20 years, what happens is that we are pushed into trying to do something for people. However, we start off with a working group, a steering group, a strategy and then it falls away. They are all delayed in their publication. It therefore seems as if they are trying to frustrate people and tell them to go away.

My final point is that I do not class people as having disabilities. They have different abilities. We need to get to a place where people can fulfil their ability. It is important that they are given the right to do that. I think about the young man drinking his pint of Guinness, or even Brian down in Ennis. That is a great story. The problem is that it should be normal. It should not be an exception. People should not have to come in to tell the committee about these exceptional things that have happened. We should be saying that this is happening every place. I thank the witnesses again.

Mr. Paul Alford:

Moving out needs plenty of support and help from other organisations. I got help from Possibilities Plus. They are brokers that help people to move out, live a life of their own, and choose their own support. A proper budget is needed to move out. If you are in an institution, independent living or a nursing home you bring that budget with you. People in these places do not want you moving out because they want to keep your budget. They want to support you. However, you might not be happy there. There is a lot of work in trying to get out of these places, fight for your rights and live your own life.

The other thing is that it takes a few years. It took me three years to find somewhere to live, and which was also reasonable to buy. There is also the matter of who is going to support you. In that case are you going to be part of that interview, or are you not going to be part of the interviews? When you are in these institutions they can tell you that Dick and Harry are going to be working with you, and you have no choice in it. You have to do what they want you to do. It is not what you want in life. They should do what you want and it is your choice at the end of the day as to what you want. You have to remind the staff they would not have a job but for the people living in these institutions, independent living and nursing homes. That is an important point to get through to them, but they do not like you saying that. They have to do what you want to do because you are paying them out of your budget. It could take a long time to move out and get the right person to work with you, live a good life and get out to that community, to mix in with other people and know your neighbours.

Dr. Karen Foley:

Deputy Canney mentioned acquired brain injury. I will take the example he gave of stressed parents coming into his office. That is a typical experience for any of the agencies here. We are harping on about case management but a case manager in that situation, whether the individual had acquired or been born with an injury, would be one point of contact who was informed about the condition and would be able to educate the family on the support structure, what to expect, what is normal and what to do about deficits and issues causing the family challenges. The case manager would support them on that journey in navigating housing issues, carer’s allowance and benefits and linking in with support the child might need around school and education. A case manager has the ability, skill set and expertise to support the family and the individual, a child in that instance but it could be an adult in another instance, in navigating their journey, rather than having to figure out the system and bring it all together. Someone traumatised by a life-changing event will feel distress and grief and there is an emotional journey that has to be gone on, as well as everything else. A case manager in that situation would take the stress out of it for them and help them know what is and is not normal, what to expect and what is potentially needed. It is the person’s choice about what he or she wants to link in to. The case manager is not making the choice for them but is taking the stress out of navigating the journey. That is what case management means for us in Acquired Brain Injury Ireland and it is true for any illness, disability or condition .

Seán Canney (Galway East, Independent)
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Case workers are a scare resource, I imagine, in the HSE or wherever the services are coming from. We do not have enough case managers because so many people need help. They are stretched and it is hard to access them and get time with them. Time is needed because everything is new to people with an acquired injury or disability. There is a learning curve for parents, family and the person involved. It is not a half-hour meeting, tick the box and let them off with a contact list. That is the problem.

Dr. Karen Foley:

Every organisation, whether disability or mainstream, has forms to fill in and lots of work to be done to bring it together. A case manager or person in the middle would be the one point of contact. The support would naturally wane as you go along that journey but, as life changes inevitably happen down the road, the person is potentially available to you to link back in with and re-access specialist support from somebody who knows what you are going through and what is to be expected. The case manager can link you in with peers who can also support the journey, have been there and would like to support others in that situation. It sounds like a simple solution but is extremely effective. The other elements of the pathway need to exist for the case manager to support the person and family to access what they need. It is a significant step in the journey if we are talking about solutions that help us remove some of the barriers people with disabilities face.

Ms Barbara O'Connell:

There is a misconception that people with brain injuries are physically affected. The majority are not. They are walking wounded. They look perfectly fine but have significant cognitive problems like memory, problem-solving, making proper decisions and dealing with frustrations. Often the support stops because someone is walking now and is physically okay. The case manager is the person they can link back in with to help the family establish a routine, help with compensatory strategies people need to remember, make good decisions and so on. It is a key person regarding the Deputy’s other question on what happens to people after they have been discharged from the service. It loops people back in successfully. That is why we seek one for every CHO area. It is not a big ask and would have a massive impact.

Dr. Karen Foley:

Many individuals under 65 end up in nursing homes because the funding available from fair deal sends them in that direction. It is the easiest option. That is a significant issue. There is no other funding scheme as easily available to send them to and support them in a more appropriate setting.

Michael Moynihan (Cork North West, Fianna Fail)
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If the same amount of money being spent on the fair deal scheme was being spent on others, it would have far greater impact.

Dr. Emer Begley:

Mr. Alford spoke about his relationship with his key worker and how that is fundamental. As has been raised already, it is near crisis in terms of workforce. There may be a budget for a home support package but finding staff who can deliver that is increasingly difficult. We see it among members in the service-providing space of DFI. There is supply across all areas of appropriately trained and skilled staff but voluntary organisations and section 39s are competing with statutory organisations. It is the same pool of people everybody is drawing from but those who cannot offer the same terms and conditions are at a major disadvantage. The relationship with the disabled person is important and we hear from disabled people of massive concerns about the sustainability of the supports they are getting. They also care about the people they work with and want to support them. That is an ongoing concern relevant to all of these conversations.

Ms Suzy Byrne:

I will respond to Deputy Canney on helping people make decisions. Emergency situations often lead to bad decisions being made. It is not the fault of the people making the decisions. They do not see or know the other options. The options presented to people are limited. People move to nursing homes because they do not see any other option. It might be where people are offered home help supports instead of PA or social care supports and those home help supports are limited to half an hour per day and involve limited things like helping people out of bed or preparing a meal, rather than things people really want to do like engage in their communities.

A difficulty organisations like the National Advocacy Service face is that we are not an emergency service and people find themselves in emergency situations. People do not have the information. They do not know their rights or what they can ask for. Advocates spend much of their time with people telling them they have a right to ask for something. They might not have a right to receive it, in that the Disability Act does not give people rights to receive services, but they have the right to ask for something and to say they do not want to move into a nursing home, but into the community or home to their family. People need to know they have a right to say those things and a lot of advocacy work is building people’s capacity to ask for these things and to know it is okay to ask. They get told by other people they cannot get something or something is not available, or they do not know what they could be asking for.

A difficulty with our waiting list is we are not able to meet those needs, which are complex. The inquiries we receive are growing in complexity. Our waiting lists are building. By the time we get to somebody, because we have few staff and have had no additional resources since our inception, people have often moved into a situation not of their choosing. It could be from a congregated setting into community house sharing with people they do not know or get on with, or it could be somebody from an acute hospital setting into a nursing home.

The fair deal scheme driving funding is one issue and the lack of co-ordination between hospitals and HSE disability services is another. There are two separate worlds under one organisation. Hospital settings have their own budgets, needs and understanding of how people should be supported, while the HSE, in terms of community healthcare and social care operations, is a completely different organisation.

There is little joined-up thinking between the two and decisions that are being made and how somebody is supported. All of those issues with making decisions in times of crisis and change are facing people and it is hard to find the resources to have somebody independent to provide support in doing that. It is also hard to provide those services through the advocacy service when we have growing complexity of need and urgency being placed on people to make a decision.

Holly Cairns (Cork South West, Social Democrats)
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I welcome the witnesses and thank them for being here. It is great to have such a wide range of views and so much information at the committee. I will start with Inclusion Ireland. It is over a decade since the report, Time to Move on from Congregated Settings, was published and there are still over 4,000 people in these settings according to the working group. A recent HIQA report established that "most residents who lived in congregated settings did not have the same supports in place to help them exercise and enjoy their human rights." Similarly, the Ombudsman's report into the 1,300 people under 65 years who are living in nursing homes identified systemic issues and negative impacts, including financial challenges, disregard of the will of patients and poor quality of life. Based on these and other contributions, this committee has called for the implementation of the Time to Move on from Congregated Settings recommendations and the introduction of a statutory right to independent living.

The case of 1,500 people with intellectual disabilities living with primary carers who themselves are over 70 years of age, approximately 485 of whom are aged over 80, was mentioned. Sometimes when a family carer dies these individuals are forced into a nursing home without any choice, control or transition plan at one of the most difficult times in their lives. Besides that clearly being wrong and inhumane, it is a clear breach of their rights. Could we hear more about that type of practice and its impacts?

Mr. Alford's story was interesting. I thank him for sharing it with us, which he should not have to do. He demonstrated how basic freedoms and dignities that we take for granted were denied to him in those settings. If he is comfortable with doing so, could he tell us more about he difference that independent living made to him? He mentioned that his family did not necessarily want that at the time. We hear from different families, parents and carers all the time. People often try to do the right thing but it is not necessarily the right thing for the individual who they are trying to help. That is a complex and layered issue we often deal with in this committee. I am interested in hearing Mr. Alford's insights into that and how he navigated it, or any advice he might have for somebody else.

I will ask questions of the National Advocacy Service and Acquired Brain Injury Ireland afterwards if there is time.

Mr. Paul Alford:

The thing about moving out is that I was not happy in the institutions. For example, if they found an unclean glass in the institutions, they would ring my job and tell me it was my job to clean it. Then if the bin was smelly, they would ring my job and tell me I had to clean that. If I did something, they would say I did not do it right. We used to have arguments in the institutions a lot. A person used to come and kick and bang my door sometimes and the staff did nothing about it. They just told us to get on together, that this person had bad health and I had to respect that. They did not do anything for us. It might stop for about six months and then it would start again.

I was not happy there. When I told families and staff they said I would not be able to live outside and that if I wanted to go outside, I would have to go back to Aylmer Road in Newcastle, where they could give me a place to rent. They told me that another option was to go to Saggart and live with someone I knew but had never lived with, which meant I would not know what they would be like. The other option they gave me was to go out renting and I said I would not be able to do that because it is too expensive. They told me that if I left, I would be doing so of my own accord and that they were only giving me three months in which to come back. I had to fight for half of my life to get out of these institutions and into independent living because I was not happy there. Family and staff did not want me to do all that but it was not their choice; it was my choice to do it at the end of the day. If you do not fight for your rights, you do not get anywhere. You have to fight all of your life but now I do not have to fight because I went and bought my own place. The best thing is having a key to your front door. That is important, as is being able to go in and out any time you like. Then you do not have to tell people where you are and what you are doing.

Ms Derval McDonagh:

That is a brilliant example. It is horrific that what Mr. Alford describes, with those false options being provided to him, was the reality. Mr. Alford and others were told they could either go and rent themselves or go and live with somebody they did not know and that they would be back in three months' time. That happens to people all of the time because they do not have the support to make decisions. Ms Byrne and Ms Condon have spoken about that. Deputy Cairns asked about real-world examples. This is happening all the time. I mentioned in the opening statement that the most fundamental things about people's lives, such as where they would live as human beings, are being decided by committees. There are committees meeting across the country looking at where people will move in emergencies. The disabled person is probably not in the room or involved in that conversation and his or her family may not be in the room either.

I had the experience of working with a family recently. The elderly mother was in her 80s and her son was in his 50s. She has Alzheimer's disease and a lot of issues and it was deemed that this was an emergency. She is from north Cork and had lived there for her entire life with her son. They were close to one another and had a fantastic relationship. However, she knew she was at a stage where she could not continue and because it was deemed an emergency, her son was offered a place in north Kerry. I had to show her where the town was on the map and she said she would never see him again if he moved there. That is happening all of the time. We are deciding on people's lives by committee and it is horrific. We really need to move on from that. That is just one example.

We have all spoken about leadership. We need vision and we need people to stand up, be courageous and say this is enough. Alongside that, we need a well thought-out and fully-costed plan for how we will do this incrementally in the coming years because people are suffering. Ms Condon mentioned it and all of the examples from the National Advocacy Service bore that out. People are waiting and have their lives on hold. That is not good enough in 2023.

Holly Cairns (Cork South West, Social Democrats)
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That brings me on to the National Advocacy Service. In its opening statement it made reference to the significant growth in its waiting lists. I know that each and every one of these cases represents an individual with complex needs and immediate concerns. The National Advocacy Service anticipated growth in its services due to the changes in the mental capacity law. Has the service's staff levels increased to meet demand? If not, is this a matter for the Citizens Information board or the Minister for Social Protection, or both? What would need to be done? Does the National Advocacy Service anticipate that the assisted decision-making legislation will lead to greater demand for its services? I ask Ms Condon to elaborate on that and on what the National Advocacy Service's role will be in that advocacy. I will move on to Acquired Brain Injury Ireland afterwards if I have time.

Ms Joanne Condon:

Needless to say, the increase in our waiting lists is not specifically or only for those living in congregated settings because we work across multifaceted advocacy issues.

However, in line with the numbers we have looked at today concerning congregated settings, a large cohort are in congregated settings and that cohort have their rights infringed possibly more than anyone else does, not least because of their inability, in many cases, to communicate their experiences verbally. Often, they are in environments where they do not have the support to access advocacy and other services such as the ones represented at this meeting, which could change their lives and make them better. Our concern about waiting lists is, as the Deputy pointed out, that they are people, not numbers. The experiences of the people on our waiting lists are horrific and the level of distress, arising from the quickness of the decision-making being forced on people without adequate supports to understand their rights and options and to know how to navigate very complex systems, is growing all the time. Deputy Canney referred to the complexity of the systems. It is increasing all the time, yet people’s ability to access the supports they need is not. That is a significant concern.

As for who is the decision-maker about that, we are supported by the CIB and the funding comes through the Department of Social Protection.

In respect of our role under the Assisted Decision Making (Capacity) (Amendment) Act, a large cohort of those whom the NAS supports comprises wards of court who will, inevitably, come in under the new Decision Support Service, DSS, and various tiers of support that will be available in that regard. Moreover, a growing number of people who contact us seek decision-making arrangements of different kinds. Again, they will need advocacy support to understand how that system will operate.

For those who may be under decision-making arrangements, if they are experiencing issues where, for example, the principles of the Act are not being adhered to, perhaps because their capacity is not being assumed within their situation and they are having their capacity questioned, or if they are having experiences with decision supporters that are not in keeping with the codes of practice, they may require support to make complaints to the DSS to have that investigated. It is quite significant. In the forecasting the DSS has conducted, the potential figures for those who will come in under decision support arrangements are enormous. While we cannot be exact about the specific impact it is likely to have on the demand for our service, we know it will cause further growth.

Holly Cairns (Cork South West, Social Democrats)
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Is there a need for an increase from the Department of Social Protection to help deal with that?

Ms Joanne Condon:

Yes. As my colleague Ms Byrne pointed out, we have never had an increase to our advocacy resources since the inception of the service, yet year on year, the number of inquiries to our service has continued to grow, as have the number of cases we have worked, despite the fact we have not had an increase in resources. I mentioned earlier that the complexity of the work has also grown, so the pressure on the service is immense. The level of distress we hear advocates talking about only touches the surface of the distress experienced by those we are working with.

Holly Cairns (Cork South West, Social Democrats)
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What kind of increase would be needed to meet even the existing demand, outside of meeting what we know will become future demand through the Assisted Decision Making (Capacity) (Amendment) Act?

Ms Joanne Condon:

With 250 on our waiting list, the average caseload for an advocate, given the complexity and the types of issues they deal with, is approximately 20. That will give a ballpark figure for what will be required to address the immediate waiting list that exists. There is also the growth in the complexity of the issues and their duration. As Ms Byrne stated in the context of the example of somebody she has supported, it has taken 12 years to move. We cannot walk away from people. Although ours is an issue-based service and the idea is we are there as a short-term support to help people address the barriers and overcome them, the reality is that is taking longer and longer and is more complex. It is difficult but the concern is that those who have the least voice are being further marginalised, with even fewer rights, by not being able to access advocacy.

Furthermore, we have a remit for those living in residential services who do not communicate verbally. If they live in a service that does not welcome advocacy - I am sad to say that is still the case in certain places where we do not have co-operation or inquiries coming into our service despite an absolute need for it in certain places - we would like to be able to get to those people by having boots on the ground and being able to identify where they require advocacy support, because they are not going to be able to pick up the phone to us or send a form to us. That is compromised as well by our waiting lists because we simply do not have the staff hours to be able to put boots on the ground to find those people. That is a considerable concern.

Holly Cairns (Cork South West, Social Democrats)
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I thank Acquired Brain Injury Ireland for its proactive approach in outlining solutions for the massive shortcomings in the national neurorehabilitation strategy. Its representatives emphasised the importance of national assessment teams in being able to help in nursing homes or hospitals to move back to the community. How would those teams operate on the ground in practice?

Dr. Karen Foley:

Our services engage with nursing homes where there are teams in place for case management. Given that level of experience and how effective it can be, with good outcomes that can be achieved, we put a proposal to the Government to put in sufficient assessment resource and capacity throughout the country to offer an assessment to every individual under 65 in a nursing home, regardless of his or her diagnosis, so not just people with a brain injury. The purpose of that is to allow equal access to that assessment to identify the support needs that would need to be met to bring that individual who wants to move closer to the community and to start that journey. Our experience on the ground is of a lottery approach. It is a lottery approach in each CHO area and how progressive it is being in trying to meet the yearly targets it has been given to move people on from nursing homes. Some organisations are more proactive and have actively sought assessments of the individuals in their nursing homes to identify them. Other areas, however, are not as proactive. Given our experience in this area, we could offer an equitable approach throughout the country to allow every individual under 65 access to an assessment and a recommendation for what they would need to live a life that is more of their choosing.

Fiona O'Loughlin (Fianna Fail)
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I apologise that, because of a conflicting schedule, I did not get to hear all the witnesses' presentations, but I felt a number of emotions during what I did listen to. I felt inspired by all the actions Mr. Alford has taken in his life to ensure he has control and that he finally managed to get to be in a position he wanted. I also felt encouraged by the professionals who are attending the meeting and by their care and concern for those they are supporting.

There was also some hopelessness, however, about where we are and where we are trying to get to. Someone commented on the fair deal scheme and I appreciate the point. I have a 58-year-old friend who lives in a nursing home because of multiple sclerosis, MS. He is the most wonderful person, and while he has been in the nursing home, he has completed a master's degree relating to climate change, which is fantastic. I have never heard him complain whatsoever. I am interested in following the thought that was expressed regarding another funding stream, separate to the fair deal scheme. What would it look like and what would the witnesses envisage for those under 65 who are in nursing home care?

Dr. Karen Foley:

In the experience of ABI Ireland, we have worked with many people who live in a nursing home. Individuals can have a range of needs, including very low support needs. It might just be that they need their house to be adapted and then, with a little transitionary support, they can live successfully in the community. By contrast, some individuals need 24-7 support on an ongoing basis for at least a number of years, but a more individualised support.

The support package around each individual will be different depending on how that individual chooses to live, their abilities, challenges and what is meaningful for that person, including the supports in place. No one's journey looks the same and that is how it should be. I am not sure what the mechanism would be if we were to move away from the fair deal scheme. The point is that the fair deal scheme does not give any access to people who are under 65 to any supported environment other than a nursing home. That is their only option if they cannot go home.

The reasons people cannot go home can vary. Some people might simply need their houses to be adapted. Some people may be the walking wounded, that is, they do not have any physical disability but they need what we call monitoring support. They need someone to be in their vicinity 24-7 for other reasons. For example, they might be vulnerable in how they make decisions or how they manage risk in their daily environment and it might not be available from their families. It is unreasonable to expect families to assume that responsibility, to give up their lives, their jobs and other roles in their lives to assume responsibility for a family member.

If a funding stream was enabled to allow individual support needs to be assessed, those assessments should account for support to come in and do for, as it were. There may be some elements of people's support needs where they need someone to come in and do something for them, but assessments should also account for the areas of their lives in which they would like to work towards being more independent. They should also enable that. There should be a dual focus at assessment level, not only a focus on needing someone to do something for the disabled people because they are in a certain position. We must allow people some choice around the kind of environment they would like to live in and what their support structure looks like. It is hard to be more specific because everyone's journey and support needs will be matched to needs.

Ms Barbara O'Connell:

On the example Dr. Foley gave, someone might have very high medical needs, but nursing homes were designed for older people. For people who are 58 or whatever age whose level of activity and social interaction is not being facilitated, that is a problem. People may need to live in a bigger group setting because of medical and other needs, but, going back to the issue of environment, it depends on how people are being facilitated. It is great that Mr. Alford is being facilitated to access education, but that is not typical.

Dr. Karen Foley:

I know. I am conscious. That is because of him.

Ms Barbara O'Connell:

He should get that, even in a nursing home type environment. In England they are called younger disabled units. Whatever it is called, it might be appropriate for support of the medical and nursing needs, but that does not mean people should have to listen to and interact with people who are older and confused, who might not remember their names, who cannot build relationships or socially interact, who are being fed and so on. There is no enablement potential for them and that is crucial. Some nursing homes do it and are good at it, but it is not their function.

The funding streams could be twofold. If people have medical and nursing needs in a bigger setting, they should be available, and if they can be accommodated in a community setting, that should be available. That money could be made available through the existing disability stream, but most of the money for disability is for intellectual disability at the moment and very little is allocated proportionally to physical and sensory. Many of our clients do not have a physical disability. There are existing channels it could be put into, but it is not. The fair deal scheme is locked to nursing homes so, as Dr. Foley stated, people do not have a choice and they cannot move because the fair deal scheme does not follow them.

Fiona O'Loughlin (Fianna Fail)
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I thank the witnesses for their response. I agree there should be a person-centred approach in how we best support people in their choices and in what suits them. Ms O'Connell mentioned enablement. I totally agree that it is about enabling, empowering and listening to voices such as Mr. Alford's about the lived experience of having to fight the system to get to where he is. It occurs to me that we do not have enough step-down facilities, which are between the private home and the nursing home, where people can live independently but support and monitoring is available at the same time. We do not do enough of it at all in Ireland. A gentleman called Pat O'Mahony wrote an excellent book, mainly geared towards older people, but the same principle could be used. When people need to move, for example, from a big house in the countryside, because driving is perhaps becoming a problem and they need to downsize, they should be able to go to a place where supports are available. They should have their independence but also have supports around them. We need to look at being able to use fair deal funding for that because that is the only mechanism that is available for supporting people. Perhaps the committee can consider that.

Michael Moynihan (Cork North West, Fianna Fail)
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Senator Seery Kearney is online but cannot participate in the meeting. She has been contacted by parents and people who are listening to the committee meeting this morning and are fearful of the journey. Is there any resistance in the advocacy the witnesses do with State organisations? Do they experience systemic resistance to advancing ideas? For example, the fair deal scheme funding is available to patients depending on their financial circumstances. The phrase "money follows the patient" used to be used. If that was a universal payment that was available to support people in their homes or communities -the fair deal scheme will cost the State a certain amount - and if the money from the fair deal scheme were to be used in a different way, we would have to change the legislation. Senator Seery Kearney's question is whether there is systemic resistance from the HSE and other organisations to change or to advancing new ideas. Her point is that many parents are watching this morning and wondering what their journey will be down the line. They are fearful about that journey. Will the witnesses comment on the perceived or actual resistance they experience?

Ms Joanne Condon:

I do not want to make general statements because pockets of people are absolutely supportive of everything we have discussed this morning. They recognise people's rights and want to uphold them. We do experience resistance in the system. We would love to do ourselves out of a job as an advocacy service and not be needed. Unfortunately, that will not happen because of the level of barriers people are facing. That is not to negate the resourcing difficulties, the challenges people face in staffing and resources at every level across the system. We are not naive to them and do not ignore them, but they all create a system that is self-propelling in the sense that it is very difficult to go against the grain. Mr. Alford has articulated the level of resistance he experienced to his wish to live independently. That is the classic experience we have in our casework: people coming up against barrier after barrier, attitudes that are not helpful, and paternalistic-type attitudes whereby people frame it as the need for care and services rather than, as Ms McDonagh has highlighted, the need to live an ordinary life and do all the things we all enjoy as part of life. The system is very complex to navigate. It does not afford people that individualised approach to be able to say what would work for them in their unique set of circumstances. Everyone is different.

We have been involved in some of the ongoing work on the implementation of the Ombudsman's report, Wasted Lives. Some of the project work in that regard is really good to see because the approach is to meet people one on one. Their unique sets of needs and wants are being understood and matched with what is realistically achievable within our budget. Even being listened to and being able to have an input and make decisions to guide the planning are huge for people. This does not often happen. Very often, people are just ignored. Our experience is that those with a disability at the centre of decision-making can often be the very last to find out what decisions have been made.

Ms Suzy Byrne:

I want to talk about families. We are often contacted by families who would like to support young adult family members at a very early stage in helping them to have lives of their choosing, but the pathways do not exist for that. I recognise, in particular, those families who want a sibling, son or daughter supported in achieving independence and choice and in obtaining the home and support needed, but options are presented only where there is nobody around to provide that support or there is an emergency. We are losing a lot of potential to support people in having a choice as to what to do when they have good support around them and to have agency in their lives. We need to address that. We are talking about assistants, schemes and the fair deal but also about family dynamics and how to support people in making choices within their families and recognising their status within their families. We need to think about this matter and how support can be offered by the agencies. We see the resources that agencies have. They are continually under pressure but it is so important to support people with disabilities on their journeys through life. At present, support is offered only when people are in crisis. Needs change and a little support now might mean less will be needed in the future.

Ms Barbara O'Connell:

I echo Ms Condon's point. In our work, we have met real champions within the HSE. However, one of the big challenges is that, although we are funded by the HSE, our staff are not paid the same as its staff to do the same work and, therefore, there is an element of not being valued and no recognition. Paying the same amount implies people do the same or similar work. They should be paid the same amount. That is a big issue.

The second issue is that while there are often great people working with us, access to decision-makers is very difficult. We find it is a real challenge to get to the person who can make the decision that will make the difference. It is often a very big challenge. We have had to engage political support to try to get to the decision-makers to make our easily implemented proposal that would save the HSE millions of euro. It is really difficult. It seems crazy and contradictory, but that is the reality of it.

Ms Derval McDonagh:

If someone was to design the whole system again and there was a clean slate relating to how to support people with intellectual disabilities or disabled people in general, the system would look absolutely nothing like it does today. We are dealing with substantial legacy issues concerning institutionalisation. In the past, things were set up through groups coming together where the State was not providing services. Group models of services, including day services, and group homes have been used. If we were to redesign the system now, we would start with affected persons early in life and figure out what they want and need, the kinds of lives they want and how their families can support them in getting there, as in every family. Unfortunately, however, that is not how the system is set up right now. There are systemic issues. The blocks would be released a little if we got more into planning mode and were less in crisis mode. The crisis is perpetuating the thinking because, if you are dealing only with people in trauma and in crisis, you are putting in emergency measures and taking out choice and control. If we put in place planned services for people over time, we would unpick some of this slowly but surely. There would be less resistance over time and more positive examples of people such as Paul and others moving out into community settings.

I agree that there are many working in the system who are hungry for this change and on board, but it is a mammoth task to make the ship turn around. I would like to see more sharing of stories of possibilities. We need to do a better job in organisations such as ours of painting a picture of what is possible. We need the systemic issues addressed, moving from crisis mode to planning. There are opportunities to do that. Report upon report has been written about what needs to happen over the next few years, and we just need to see the plans implemented.

Dr. Emer Begley:

I have a point on the fair deal, its funding and the associated model. I draw members' attention to the statutory home care scheme, which is ongoing in the HSE. DFI and others are members of the Home Care Coalition. Home care for disabled people is included within the statutory home care scheme, as are personal assistant services. However, the whole model is framed around care for older persons, so there is potential for us to head down the same path for home care as for the fair deal. There is ongoing work on this and a focus on the development of home care regulations. However, it would be interesting to see the HSE's plans for implementation and how things will look for disability services and disabled people, including in respect of the financing and funding model because there is talk of co-payment and paying out of pocket. There are considerations within that.

Michael Moynihan (Cork North West, Fianna Fail)
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We might look for the relevant documents from the HSE just to see what it is doing regarding the model.

I thank all the witnesses for their thought-provoking evidence. This was one of the first meetings in a long time at which nearly every member contributed. That testifies to the evidence the witnesses gave us. Lived experience is what we want to hear about. We have abstract ideas at every level on how disability services should work and what should be in place but lived experience is what we have been considering from the outset. I thank the witnesses sincerely, including for the work they continue to do in their various roles. To keep the information coming two ways, we must account for issues they believe we should raise. We are only as strong as the evidence and documentation they give us. We need to explore further the fair deal, including the money. It may be a route to help some families or individuals with disabilities. These are issues on which we need to expand.

I again thank the delegates for their evidence. This has been one of the longest meetings we have had, which is a testament to the value of what the witnesses have been saying to us. I thank the members, who have contributed enormously, have a great understanding and are working very hard to advance the cause of people with disabilities and their families. I thank our team here, which does extraordinary work in ensuring the smooth running of everything.