Oireachtas Joint and Select Committees
Wednesday, 22 April 2026
Joint Oireachtas Committee on Disability Matters
Living Arrangements for Persons with Disabilities: Discussion (Resumed)
2:00 am
Maurice Quinlivan (Limerick City, Sinn Fein)
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Apologies have been received from Senator Bradley. The purpose of today's meeting is to discuss living arrangements for persons with disabilities. I will invite the witnesses to make opening statements that will be limited to a maximum of five minutes each. Once opening statements have been delivered, I will call on members in the order they indicate. I will use ask a number of questions. I propose that we schedule a short break to be taken at 10.50 a.m.
From Home and Community Care Ireland, I welcome Mr. Joseph Musgrave, chief executive officer and Ms. Leanne Matthews, service user. From Remember Us, I welcome Ms. Nora Roban, founder and Mr. John Atkinson, member. From Respite and Services Kerry for Children and Adults Group, I welcome Ms. Jacqueline Riordan and Ms. Josephine Keane. From Before We Die, I welcome Mr. Tony Murray, founder, and Ms. Sarah Roarty, member.
Before we begin, I will read the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory in relation to the identifiable person or entity, they will be directed to discontinue their remarks by me. It is important that they comply with any such direction I may make. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege.
I remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex. Members of the committee attending remotely must do so from within the precincts of Leinster House. I remind all those in attendance to make sure their mobiles phones are switched off or on silent mode.
I call the witnesses to make their opening statements.
Mr. Joseph Musgrave:
I thank the committee for providing Ms Matthews and myself the opportunity to address it today. Across Ireland, just over 7,000 disabled people receive home care and 3,000 are in receipt of personal assistance service. Home care provides help with fundamental functions like taking a shower and going to the toilet, right the way through to peg feeding and stoma bag care. For many, home care helps them to maintain their dignity and independence.
Home and Community Care Ireland, HCCI, the organisation I have led for almost eight years, is the national representative body and leading voice for independent home care providers in Ireland. We have 46 member companies, employing over 20,000 home care workers. Ms Matthews and I believe that home care for disabled people needs reform and requires significant new investment if we are to do justice to the people who need this service. Since 2018, the budget for older persons home care has increased at twice the rate as that for disabled people. Over 7% of people over the age of 65 receive home care; just 1% of disabled people do. Around 1,200 people, which is 1,200 people too many, remain in nursing homes when they could, and should, be cared for at home.
Ms Leanne Matthews:
I am from Castleblayney in County Monaghan. Before I had a brain haemorrhage, I led a very normal life. I have two children who are now young adults. I worked full time and was very much an active part of my local community, even giving myself over to dancing in public. I had a brain haemorrhage and afterwards I needed support for everyday activities. I wear a leg brace, so I needed support to use it. I would not have been able to put on my footwear without my home care package. I would have been bedridden. I suffered mental health issues prior to the brain haemorrhage. I can quite honestly say that I do not know if I would be here as good as I am without my home care package. I was left in the nursing home for two years. My independence was totally severed. It did not just affect me, it also affected my family and their lives. I was admitted to a nursing home while waiting for a home care package. It did everything it could to accommodate me but as the days slipped into weeks I wondered whether that was going to be it and a matter of me being okay where I was. I was not okay. I am very good at putting on a brave face. I am back home with my family now, and my friends visit very regularly. They did not like visiting me in a nursing home.
Mr. Joseph Musgrave:
Leanne’s story, which I first heard three years ago, remains as powerful today as when I first heard it. I will close with some policy proposals. We need a national home care scheme for disabled people, which has now been delayed over two years. It needs to be put in place as a matter of urgency. Home care for disabled people will be regulated as part of the Home Support Regulations Bill working its way through the Oireachtas. Serious consideration needs to be given to us regulating personal assistance services also. Dedicated work needs to take place between HCCI, the HSE and other bodies to significantly reduce the number of people aged under 65 in nursing homes.
I thank the committee for allowing Ms Matthews and I the time to explain how home care for disabled people works in this country. We look forward to answering questions.
Ms Nora Roban:
I thank the committee for the invitation to speak and for its focus on such an important issue, the future living arrangements of people with disabilities in Ireland. We are here on behalf of Homes for Us, a not-for-profit company being created by me and a group of concerned sons, daughters and parents and carers. I am the founder of Remember Us, a parent-led social club based in Balbriggan, supporting children, teens and adults with all types of special needs and support for their families. We currently have 400 families registered from all over north County Dublin and surrounding areas, and we have been in operation since 1998. Homes for Us grew from Remember Us to address the hugely important issue of where people's sons or daughters will live when they are gone.
Today, we are speaking not just as an organisation, but as parents of our sons and daughters. We are parents who lie awake at night asking this very simple but deeply frightening question: where will they live? As parents, we live in constant fear of what will happen to our children when we die. We are proposing a pilot housing project in north County Dublin known as Homes for Us, a new model of homes for people with disabilities. In developing this proposed pilot project, we have consulted those who it impacts most - our sons and daughters - and have taken on board their views on how they would like to live in the future. A central goal of Homes for Us is to ensure that our sons and daughters continue to live in the community that they were brought up in. This is a key anchor point to ensuring the success of the goals of the pilot.
This project would consist of approximately 15 homes, located within an ordinary community setting - not an institution, not a campus, but a neighbourhood. Each individual would have their own front door, their own private space and their own life, but crucially there would also be on-site, shared support services. This model offers something that is currently missing, which is stability for residents, peace of mind for families, efficient delivery of supports, and, most importantly, a genuine move towards supported independent living choices. It is not congregated care and it is not isolation. Homes for Us offers a supported home in the community, not simply a residential setting.
Homes for Us represents a strategic alternative to the limitations of isolated housing, specifically designed to solve the crisis of social invisibility. By fostering a peer-integrated community, we create a social anchor that builds the confidence and relational health necessary for residents to interact meaningfully with the wider social structure. For many families, this model provides the essential balance of safety, peer support and community inclusion they have long advocated. We believe this approach is fully aligned with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, particularly when it is based on individual choice, person-centred planning and integration into the wider community.
We are not asking for a national overhaul overnight. We are asking for a pilot and a chance to demonstrate what works, to gather evidence, to give families hope and to give policymakers a real, Irish example of a model that bridges the current gap because ultimately, this is not about buildings or policy frameworks. It is about people. It is about sons and daughters. It is about dignity, safety and belonging. It is about ensuring that when us parents are no longer there, our sons and daughters are not left behind.
The main goal of the Homes for Us pilot is that our sons and daughters have safe, secure and supported community-based homes, where they can be happy and live fulfilling lives, before we die, before the crisis. We would welcome the opportunity to work with the Government, the HSE and all stakeholders to develop this pilot project. Ireland has made important commitments under the UNCRPD. We strongly support those principles, particularly the right to independence, dignity and inclusion in the community. However, we are concerned that current policy has become too narrowly focused on one aspect of that commitment, which is the move away from congregated settings. While that goal is important, it cannot become the only solution because for many families, including ours, the current system does not yet offer realistic, safe or sustainable alternatives, and planning at a time of crisis when the person with a disability is already suffering a monumental loss is unjust and undignified for our sons and daughters. It is a double-whammy for them.
There is a gap between policy and lived reality and it is in that gap that families are being left behind. What we are calling for today is not a step backwards but a step forward and a more complete, practical implementation of UNCRPD-aligned accommodation principles. Current national policy very clearly and correctly is aligned to de-institutionalisation. However, the policy in place needs to go further. With this in mind, we present the following three main proposals. First, we are looking for the fullest cross-party and HSE backing, support and funding for the proposed Homes for Us pilot project. We believe that the new Homes for Us housing model will best allow for our sons and daughters to live in their own community and be settled in their home in a safe and supported own-community living environment before we, as parents, get seriously ill or die. Just as important, this is also the clearly stated wish of our sons and daughters themselves. Second, we are looking for amendments to any associated or necessary legislation to allow policy changes. Third, we are looking for policy change at Government and HSE level to allow full realisation of the UNCRPD, one that recognises that choice must include a range of living options, not just one model. We respectfully ask the committee to support a broader, more flexible interpretation of UNCRPD-aligned accommodation. I thank the committee for taking the time and giving us the opportunity to be here today.
Mrs. Josephine Keane:
I thank the committee for the opportunity to speak with it about respite services for adults with disabilities in County Kerry. My name is Josephine Keane. I represent a group of parents from south Kerry whose sons and daughters have either left, or will shortly leave, St. Francis Special School in Beaufort. I am a registered nurse in intellectual disability and have spent over 35 years working with and advocating for people with intellectual disabilities and their families. I am joined today by Jacqueline Riordan, a parent of an adult son with complex needs, who will share personal experience after me.
Our key message today is simple and urgent. There is a severe lack of appropriate respite services for adults with disabilities living at home under full-time parental care. Across all of Kerry, there are only eight HSE-provided respite beds and a very small number provided by the Kerry Parents and Friends Association. This is wholly inadequate. It is vital to recognise that adults with disabilities do not have a one-size-fits-all set of needs. Many of the young men and women we represent have significant and complex care requirements, often medical in nature. Their parents provide care 24 hours a day, seven days a week, with no breaks. The physical, emotional and psychological strain on families is immense, and many are nearing breaking point. Properly designed respite services would allow parents much-needed time to rest, to care for their own health and to support other family members. At the same time, respite gives adults with disabilities the opportunity to socialise, gain independence and participate in age-appropriate activities outside the family home, experiences that are vital to quality of life. We urgently need more respite beds designed specifically for complex needs and delivered through a co-ordinated, specialist model. In this context, we, the parents' groups, strongly support the development of a centre of excellence for respite care at St. Mary of the Angels in Beaufort, as part of future planning for that site, while fully respecting current residents and national policy commitments. Without meaningful respite provision, families will no longer be able to sustain home-based care. This will inevitably lead to increased demand for full-time residential placements, an outcome which many families wish to avoid and one that could be prevented with timely action. I thank the committee for its time and consideration.
Mrs. Jacqueline Riordan:
Under Article 19 of the UNCRPD, people with disabilities have the right to live in their communities with the supports necessary to do so. Right now, parents in Kerry feel that right is not being upheld. Currently, overnight respite provision is extremely limited. There are four houses in Kerry for respite, one each for children and adults in north Kerry and south Kerry. However, the overnight respite house in south Kerry for adults only opens at half capacity on weekends for nine months of the year, due to bank holidays.
This means that some families may access only one to two weekends of respite in the entire year - if they are lucky. This is due to lack of funding, not staffing. This level of support is not sustainable. For example, some families are caring for individuals with high complex needs who may have autism, non-verbal communication, epilepsy, chronic insomnia, significant behavioural challenges and even high medical needs. The level of care is constant, often 24 hours a day. Without adequate respite, parents are pushed to physical exhaustion, emotional burnout and crisis. When crisis happens there is nowhere to turn. Emergency residential placements are not available. Families can be left with no option but to present at acute services like accident and emergency, an outcome that is distressing, inappropriate and avoidable.
Article 19 is clear: people have the right to remain at home, within their communities, with proper supports. Yet, home care packages and shared care supports are extremely difficult to access. A few hours a week of in-home support is not enough when what families need is overnight care.
Families are not asking for more than their rights. They are asking for the basic supports that allow them to continue caring safely and sustainably. We need increased funding for overnight respite services, expansion to full-time provision in south Kerry and the development of additional respite houses to meet demand. We also need a clearer pathway to emergency care, for example, an emergency respite bed and a reduction in waiting lists for residential care in Kerry. Above all, however, families need clarity. What is the plan to deliver on Article 19 in Kerry? When will these gaps be addressed? Without real action, the right to live in the community is not a reality; it is just words on paper.
Mr. Tony Murray:
I thank the committee for the invitation. Our campaign started with a simple question, which the committee has heard already this morning: "Who will provide care for my daughter when my wife and I are no longer able to do so?" Unfortunately, many parents like me and all those here often hope our children will go before us. That is how bad the situation is.
Over 2,000 adults with an intellectual disability live with parents aged 70 or older. Five hundred of those parents are over 80, with some providing full-time care into their 90s. That is the world we live in. Some 98% of families we surveyed - and we surveyed 1,000 - had no formal, written transition plan for their son or daughter for future housing. Only 19% of adults with intellectual disability are currently registered with a local authority, so we can see that the Government, the State, has no idea who is out there. While the Government's disability action plan 2024-26 targeted 900 new places, only 389 have been funded, leaving a deficit of over 500 places. In the current budget, 178 of the 250 funded places were for emergency cases, meaning a residential place is typically provided only when parents die. The emergency model is described as "cruel and heartless" and is "the most expensive way of providing ... care". It involves putting a care package out to tender to private, for-profit companies. When a crisis occurs the adult with ID is often moved to an isolated house in a rural area. This can cause them to lose contact with their mother or father, their family, social circle and community and, most importantly, their day service. This could create conditions for neglect, and we know from our history what neglect can lead to.
Section 38 and section 39 service providers are unable to compete with private companies because they lack multi-annual funding, and the capital assistance scheme, CAS, funding model is not suitable to meet their needs. The social housing application process is not fit for purpose and does not address the needs of most people with intellectual disability. There is no single point of information for parents. There is also no standardised workflow for the application process. For example, when an application is made through a local authority there is no system to link that application to an appropriate service or to the HSE so it sits in the local authority forever. The HSE has no information on the identity or the level of support of those who have applied. The Department of housing, the Department of disability and the HSE do not take responsibility for funding and planning. That is why we have parents in their 80s providing full-time care.
We are calling for a new agency or authority, a "one-stop shop", which will be mandated to process and manage applications, linking with the Departments of housing and disability, local authorities, the HSE, section 38 and section 39 service providers and, most importantly, families. Together with a new application agency, the Government must commit to increasing and ring-fencing funding to address this crisis. Ring-fencing is very important. An emergency funded plan must be put in place in the next budget to address the needs of parents in their 70s and 80s who cannot wait for systemic change.
I will highlight a legal contradiction between the capacity Act, which presumes all people have full capacity, and a letter recently sent by the HSE to a mother of an adult with ID. This letter asserted that she had a legal obligation to financially support and provide accommodation for her child indefinitely. Only parents of people with an intellectual disability get that letter. No other parent in the country would get it. The HSE has not withdrawn the letter. Representatives of the HSE were before this committee. They would not withdraw the letter and they have not clarified what law they are citing. That letter still stands. It appears that parents have a legal responsibility but, under the terms of the capacity Act, we have absolutely no role in advocating for our adult children with ID. The Act is unworkable for the thousands of adults with moderate to severe ID. It is causing untold problems and stress for many parents and, as members can imagine, we have enough stress in our lives without dealing with that. We ask the committee to provide leadership and courage to address this issue. I urge members to respect the rights and dignity of my daughter, our daughters, our sons and the thousands like her. Housing for adults with ID can no longer be left as an afterthought.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Thanks to everybody who presented. They were powerful presentations.
I now invite the members to speak. There is a rota in place. When I call members to speak I ask them to adhere to the agenda items. Each has seven minutes. I ask them to indicate. If there is enough time, we will have a second round. We have a number of non-members here as well so we will facilitate them as best we can.
Tom Clonan (Independent)
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I thank the witnesses for being here and for all the work they do. I apologise to Ms Matthews. I was called into the health committee for a quorum. That is why I was coming in and out. I did not mean to be rude and interrupt her contribution.
There are a couple of levels here. Apologies, Chair, but I have to make a couple of observations as well as ask a question. Mr. Murray and I, and we all, as parents and carers, have to come to terms with catastrophic diagnoses for our children. You go through a period of grieving and shock and then you have to deal with the implications of that throughout your life. My son is 23. In 23 years we have never had one day of respite. In the past 23 years, my wife and I have never been away together on our own. One of us always has to be in the home with my son. He does not have an intellectual disability per se; he has a physical disability. Here, then, is the social contract. When he went from paediatric to adult when he was 18, I rang the HSE disability manager in my community healthcare organisation, CHO, and asked what the plan was for my son.
The manager said, "Well he lives with you, doesn't he? That's the plan." I asked about what would happen when I die and they said they would put me on to the social worker. The social worker asked whether he had a sister. I answered yes, he does and was told, "What are you worried about? She'll look after him when you die." That is the view of disability services in the HSE because it is not a fundamental rights issue. I lie awake at night, as I am sure all the witnesses do, worrying about what will happen. My son's needs are simple but they are profound. When I die, who will dress him? Who will look after his intimate care needs? Who will hold, dress and shower him? Instead of thinking about the future and enjoying the milestones experienced by my other children - a 25-year-old son, who has started his first new job; my 21-year-old daughter and my 18-year-old son - I am terrified. There are two former Senators who are now TDs and have experience of this and they are not happy with that social contract and a remote, paternalistic and patronising leadership style that says, "You can't just rock up on O'Connell Street and expect to meet me when you park a lorry there." We cannot rock up on O'Connell Street because we are housebound and because in the community, nobody can hear you scream. Nobody can hear the moral distress and moral injury we experience.
Mr. Murray said that he often thinks about his child predeceasing him. As my son has gone to adult services, he now has a new diagnosis, the prognosis has changed and it could be life-limiting. I had that thought - "Well maybe that's not such a bad thing." What kind of a sick society do we live in?
Regarding the political contract, when the crash came, we had a new Taoiseach who promised new politics and a society for people who got up early in the morning. I happened to be at a lunch where he was the after-dinner speaker and I told him that I get up early in the morning to give my son DIY physiotherapy because he cannot get it. My son has never had any meaningful therapeutic occupational therapy, physiotherapy or speech and language therapy. He is losing his voice. We are voice banking for him. I asked that Taoiseach whether he would give a commitment not to cut any further for our community of carers and disabled citizens. His answer was, "What you do for your son is because you love him and I commend you for that but make no mistake, the State can have no role in matters of the family." That is the political, intellectual and philosophical ideology of Fine Gael and, I hope not, Fianna Fáil. That is the philosophy. It is our problem. They know that the witnesses and I will not leave our children at the emergency department. Regarding the lady who did so in extremis, the regional executive officer said at this committee said that it is not a great idea to do that. She was told that we are responsible for our children until they are 18 or 23 if they are in full-time education but if your child has a disability, it is indefinite. That is reprehensible. They come in here and say that on the record. We have not chosen to be in this space. We are here by force of circumstance. These are people who have chosen to be in this space and this is the contempt in which they hold us. The reason for that is because we do not have the right spaces. We are the only country in the EU that does not have the right spaces.
I managed to get legislation all the way through and have written to the Minister and Minister of State to ask whether they would introduce my legislation in the Lower House as a courtesy but I did not even get an acknowledgement. They were not interested. If we look at the actions of this Government since the election, we can see that it played the disability card during the election campaign but when it got in, it introduced a budget that has left us worse off. Our objective circumstances of living are deteriorating. The proposed changes to the Disability Act 2005 will further dilute the only right we have.
As a community, we should be the most powerful lobby group in the State and yet we are fragmented over intellectual disability, physical disability and older people. All of us in this room will be disabled at some point. Some NGOs and carers' representatives campaigned for a referendum wording on care that would be inimical to our interests while other heavily funded NGOs did nothing but just stood on the sideline. This softly softly, gently incremental search for change is not working. It is getting worse. Do we need a nationwide radical, unified and disruptive campaign to vindicate our rights?
Mr. Tony Murray:
All of us were struck last week by the fact that we could not bring our adult children in wheelchairs to O'Connell Street and block it so we are suffering in silence and as the Senator noted, nobody is really taking us seriously. We were shocked when the HSE came in and was asked to clarify what it meant when it said that we had a legal responsibility. The usual answer was given - "We can't discuss individual cases" - but we are looking for a simple clarification of what law it is citing. If the Senator could not get an answer, what is it like to be a parent? The Senator can get a simple answer here. What is it like to be a parent?
Mr. John Atkinson:
The answer in one word is "Yes". That is exactly what is needed. We need to come together and coalesce into a single force within this space for our sons and daughters. We all have the same goal, namely, for our sons and daughters to realise their hopes and dreams because they are the same as us. They are human beings and they have aspirations. We go to bed at night and wake up in the morning. Between those two times, we face the terror of what happens when we are gone. I work as a bus escort at Hedgestown National School in north County Dublin. My son is 15 years of age. He has an intellectual disability with autism. Like the Senator, in his entire life, we have not had one night of respite. We wake up every morning fighting. We do not want to fight. We want to do this together and we have asked for cross-party support.
Tom Clonan (Independent)
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The trauma that is being inflicted on our community goes unrecognised and it is unaccountable. I saw something disgraceful on "Prime Time" last night where they tried to make the story of disability about the bricks and mortar of the new hospital when it is actually about the spines and the little organs of our children. People are being allowed to die on waiting lists.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I am trying to ensure other speakers get in.
Tom Clonan (Independent)
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It would happen to no other category of citizen.
Maria Byrne (Fine Gael)
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I work alongside a number of disability groups in Limerick, where I am based. There is a disparity when it comes to the supply of services around the country. Is there a difference in rural areas compared to urban areas even on a countywide basis? Sometimes people receive better services in one area. I know there is a shortage of housing for people with disabilities. Local authorities are now trying to be more inclusive and include more housing units for people with disabilities but is it working?
Ms Sarah Roarty:
There is a systemic issue regarding funding around that really needs to be addressed. Approved housing bodies have access to two funding streams, namely, the capital advance leasing facility and the capital assistance scheme. One of those covers construction but does not cover maintenance and costs. The capital assistance scheme has a more onerous application and approval process. Those approved housing bodies that do provide housing for tenants with specific needs such as disabilities are now excluded from the capital advance leasing facility funding, which continues to be available for approved housing bodies for general housing.
Our question is why housing for people with disabilities is dependent on philanthropy while general housing is fully funded. In addition, the Department of housing has informed the approved housing bodies that funding for the existing acquisition and refurbishment of houses is no longer available. My father died three years ago. He had a bungalow in a really supportive community in the town centre of Tuam, County Galway, where my daughter gets all her services. His dying wish that the house could be given to the State or an approved housing provider for Clara and her friends, but it is not possible. The money is not there to refurbish and maintain that house. That needs to be addressed. Why is that funding being withdrawn?
Mr. Joseph Musgrave:
I thank the Senator for the question. To answer her first question on home care and personal assistants directly, there is quite a large variation. In Dublin north east, if you need a personal assistant, you will on average get 24.5 hours per week. If you are in the south west, you will get 5.5 hours per week. When it comes to home care, if you are in Dublin you are going to get 12 hours on average per week and in the south west, you will get eight hours per week. One of the structural problems we have when comparing home support for older people versus that for disabilities is there is an actual nationwide framework. We can talk about how good or not it is, but there is a nationwide framework for the care of older persons in this country. There is not one for people with disabilities. That is partly the reason 1,200 people are in nursing homes. There is no scheme that gets them quickly onto a home care package.
Maria Byrne (Fine Gael)
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Is there a shortage in the workforce? Are people not putting themselves forward for these positions? I know Mr. Musgrave highlighted the shortage of funding.
Mr. Joseph Musgrave:
It is not simply a question of a lack of workers. As the home care scheme for disabled people has been delayed for over two years, what we have seen is the workforce migrate to do more older persons work. Older persons home support has grown by 1 million hours per year for six years. That means more people are being recruited and more investment is being put into it. Looking at it for disabilities, the number of disability home support clients has grown by 0% over the past five years. It just goes to show that the provision is not increasing in that area, which migrates the workforce.
Mrs. Josephine Keane:
To answer the Senator's first question about better services in different areas, from a rural point of view, it is obvious as well. I come from Kerry and worked across Kerry and Cork in my years of work. There is a situation at the moment within children's services in Kerry where if somebody is allocated home support of four hours, then two of those hours go into travelling for the care person to get to a very rural area. That needs to change. The four hours should be for the care. For example, if the same hours were allocated to somebody in Killarney town or Tralee town, they get their full hours in care, whereas if somebody has to travel down to Cahersiveen or Kenmare, the travel time comes off. That is not sufficient. There is a discrepancy.
To get back to the point made earlier, from my point of view and my experience as somebody who is not a parent but has worked in the area for so long, I have seen changes in 35 years. The one thing that has never changed, however, is the fight parents have from the day their child with special needs is diagnosed right through to the day either the parent or child passes away. They are fighting for every service. In Ireland in 2026, we need to look at this differently. They should not have to fight. I have an 18-year-old daughter at home. I do not have to fight for every step she takes along the way, so why do other parents have to do it? There is a fundamental problem there. When we talk about rights, it is a fundamental right. It needs to be looked at.
Maria Byrne (Fine Gael)
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I will ask one other question. In my experience, and the witnesses might agree, individuals who are living with carers or family or whatever are not seen as having a housing need by local authorities. Is that the case in the witnesses' experience?
Mr. John Atkinson:
It is very clear that the policy of local authorities and the Government is that it is the family's obligation to care for the son or daughter with an intellectual disability or any disability. That is the exact reason they appear invisible to the local authorities. They are just not on any list. They are not there. They do not exist. They are not part of the housing need.
Ms Sarah Roarty:
We ran a survey of 1,000 families. In the comments that came back, many parents said exactly that. They had put in a housing application and were told the application was not being accepted as they were already housed and their loved one, their son or daughter, has a house.
I will come back to the Senator's last point on carers and the availability of staff. There is an issue around pay parity that needs to be addressed. That is between section 38 and section 39 and those of the HSE. It is difficult to get people into this sector. It is a job that is absolutely essential but if you ask any of the service providers, the issue of pay parity needs to be urgently addressed.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
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I welcome the witnesses. On Ms Roarty's last point on pay parity, it is something I fully support. I work closely with St. Christopher's services in Longford. It has been there for over 50 years supporting children and families, and people with intellectual disabilities and autism. They do a fantastic job on behalf of our community. It is something I have worked closely with them on. We put it into the programme for Government and there is commitment that over the term of this Government, in conjunction with the WRC, we will get to a point of pay parity.
I am the parent of an autistic son. I do not accept what Senator Clonan said that it is not a policy for Fine Gael to look after disabled people. I do not accept that. I think he knows the reason why. When he brought forward that legislation in the Seanad, a number of my colleagues and I did not support the stance that it was taking. I have supported him since then and will continue to do that. As he knows, I chaired the Joint Committee on Autism. We issued a report three and a half years ago. I am committed in my role as a public representative, along with colleagues of all parties, to implement that. This committee did a review of that report last year. I will be asking the committee to review it again over the summer period to traffic light those recommendations and make sure we keep working on them. The autism innovation strategy was introduced a year and a half ago. It has been extended by 12 months. It is in the programme for Government that we legislate for that, and that is something I am going to make sure happens. I am also the chairperson of the Fine Gael party. In my role, my colleagues and I are committed to legislating and putting supports in place.
The Government launched the national human rights strategy for disabled people in September 2025. There is a commitment for that to be implemented, and rightly so. The Minister of State, Deputy Higgins, and Department officials are working with the DPOs to make sure that happens. I have every confidence that it will because the commitment is there from me, in my role as a public representative, as a parent and as a politician, that it is the right thing to do and it has to be done. As long as I am in the House, I will work with everybody, including Senator Clonan and others here, to make sure we implement that strategy and give every child or young person the same opportunity in life to allows them to achieve their potential and live like the rest of us. That is a commitment I will say publicly here as a public representative. I will not be blinded by anything else until we get that done and work together collectively cross-party to do the right thing. I have every confidence that we will. People are working on it currently, including the Minister of State, Deputy Higgins. I know the commitment she has and she has gone into that Department to make sure we do that.
I am also the chairperson of the joint Oireachtas committee on housing. We had discussions a couple of months ago with regard to housing for persons with disabilities. Are we doing enough across our local authority sector? No, we are not. Following on from it being discussed today, I intend to have another meeting of our housing committee. I will invite in the witnesses and the CCMA again and we will identify the issues with the local authorities that the witnesses want to highlight.
As a housing committee, we can do a report and put recommendations to the Department on the changes that need to happen, and continue to follow up on that report every 12 months to see about the implementation of those recommendations.
It was mentioned that there is a fragmentation between housing and its supply. Should a separate section be set up in the Department to work on this with every local authority on a national basis? It would be a specific section in the Department for the provision of housing for people with disabilities that would work with every local authority on a national programme, rather than having 30-odd individual programmes.
Mr. Tony Murray:
That would be most useful. One of the issues that was alluded to - it was not mentioned specifically - is the congregated setting, which I assume nobody in this room would want to go back to. It was high walls and locked gates. However, what is happening is that the system and the HSE are weaponising that decision. They are not coming up with a plan for housing like Ms Roban's plan. They are not embracing innovation or creativity. They are saying "dispersed housing" and using such phrases as "live the life they choose". Give me a break. That is just patronising nonsense. When I hear it, it triggers me. What do they mean by "live the life we want or choose"? Our adult children need housing and support. They do not have the same choices as the Deputy and I. That is just the reality and codding ourselves that they can live the life they want or choose is patronising nonsense. Politicians need to get those phrases out of their vocabulary.
We suggest a one stop shop and different solutions for different people. There is no one-size-fits-all. That is important. People ask what I would like. I would love what Ms Roban is doing. It is almost the equivalent to make it easy for people. It is like a retirement village. It has a cluster of houses in a community. There is one such unit in the estate where I live in Fairview. It is only 100 m from our house. The HSE is opposed to it now and says it will not build one like that again because it has a gate. It is bonkers. They are living on this high moral ground while there is a housing crisis and people in their 80s are providing full-time care. Solve the problem by being innovative and supporting the kinds of projects that Ms Roban and Mr. Atkinson are doing. That is what we need.
Ms Nora Roban:
Yes, absolutely. That is what is needed. It is our sons and daughters - my son, Paul, is in the Gallery - living with their friends in their own community. It does not matter how many houses there are. It is not a congregated setting. They have front doors and back gardens and when they come out the door, they know the people. I think the Government sometimes has an idealistic idea that by putting sporadic houses in, our sons and daughters will get to know their neighbours, their neighbours will interact with them and so on. Hello - this is 2026. In most new housing estates, the neighbours do not know one another. They are in and out, are all different nationalities and so on.
We need this pilot project to be pushed through. I can guarantee, 1000%, that this will be successful. It is what our sons and daughters want. It is where they will be happy, in the community where they were brought up, where they know everybody and they know the shops, cafés and pubs. They can continue in their day services, those who work can continue in their jobs and they can continue with their social outlets. It is a no-brainer. The current situation is absolutely cruel. It is wait until there is a crisis and then dump our sons or daughters wherever a bed is available, be it a respite bed in a nursing home - which takes a respite bed away from others who really need it - or a house down the country somewhere. I can tell the committee one thing and I know I speak for many parents. Our son would regress and all the hard work and effort we have put into Paul, and all the other parents have put into their sons and daughters, would be just gone out the door.
Unless people have a son or daughter with a disability, they have not got a clue. We have lived this life for 38 years. For 38 years, we have fought. Mr. Murray and other parents have done it a lot longer. We have fought from the day they were born. This has to stop. These are humans beings. They are entitled to this, so please support the pilot project, homes for us, and listen to Mr. Murray and his colleagues because we support what they are saying as well. You have to get out of your bubble and realise what exactly is going on out there. You have no idea.
Maurice Quinlivan (Limerick City, Sinn Fein)
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We are out of time on this question. We can come back to it. Sorry about that. We will move on to the next speaker.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Cuirim fáilte roimh na finnéithe. This is absolutely frightening. It is expected, but sometimes it has to be placed clearly in front of people for them to see the reality. We all understand that how this works best is with home care packages to facilitate those who can still live in their homes in any way, shape, or form, and we need to ensure we have the appropriate housing for those who need it. I do not know how many people have come to me in my constituency office and said all they need is some sort of assisted housing, and I say they are looking for a unicorn because there is not a huge amount of it available.
My son, Toirleach, is 17. He is autistic. He is getting on very well and this is probably an issue I leave out of my head. Like most other issues, I leave it to my wife. I am not putting them in the same bracket as the issues some of the witnesses, such as Mr. Murray, are dealing with, but I do not know what the long-term trajectory is.
We have had the HSE before the committee and we have all decried the fact that for years there has been absolutely no plan for long-term residential care for those with disabilities. Someone dies or someone loses the will to go on and their child is left in an accident and emergency department. The State then has to kick in; it has no choice. The problem with that is it means the only people who are able to react to it are the for-profit operators. We have now been told by the HSE that it is dealing with service providers that have a history, it is putting plans together and it is getting its numbers together. The committee has requested that information, even the differential between the cost of the for-profit and the not-for-profit providers. The witnesses will be able to guess about the information we have received back, which is something we need to follow up on.
People are told to make contact with their local authorities. I have seen scenarios where Louth County Council has been very good and has used an element of flexibility, but the system is far from perfect. Bernard Gloster says the perfect situation he espouses is that the local authority would build houses that are appropriate for whatever needs and a service provider would then provide the required assistance, but I have yet to see it. The whole idea is that when people are known to a service and are on its books, for want of a better term, the lessons can be learned there and then about what a child will need into the future.
Mr. Murray did a good interview earlier. Am I correct that he talked about one mother who is 97?
Ruairí Ó Murchú (Louth, Sinn Fein)
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She is 97 and still looking after-----
Ruairí Ó Murchú (Louth, Sinn Fein)
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That tells us the system is not working.
We are told that people should make themselves known and register with the local authority, so they are known to the HSE and therefore the profiling is done. It is now saying it is entering the phase of preparation. I am shocked Mr. Murray is shaking is head. Will the witnesses go through their experience and the grim reality?
Ruairí Ó Murchú (Louth, Sinn Fein)
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When was it done?
Ruairí Ó Murchú (Louth, Sinn Fein)
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It is absolutely fresh.
Ms Sarah Roarty:
It is fresh. Only 2% have a written plan. When we talk about further planning, what we need is a statutory register of needs.
It has been known since the day and hour my daughter was born that she has an intellectual disability. Every person in this country with an intellectual disability who requires supported housing needs to be identified, recorded and planned for and in addition, have a personal transition plan by the age of 18. At 16, when they get their disability allowance, that needs to kick in. That plan needs to be started and they need to have that transition and future-looking plan by the time they are 18 and they leave the education system.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Combined with all the worthwhile day and respite services, which provide something beneficial to the children and parents and facilitates them in the heavy lifting that will always fall on families.
Ruairí Ó Murchú (Louth, Sinn Fein)
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They already know. It will tell you we need to deal with around 250 a year or whatever but it is not delivering on that.
Mr. Tony Murray:
It is a complete underestimation. There is nobody counting. The Health Research Board produced figures in 2024, which one can assume were done in 2023. It gave the figure of around 2,000 people needing residential housing. Who did it ask? I was not asked. Did it do it by age? Does it think somebody needs residential care because their parents are 50, 70 or 80? There is no system.
Ruairí Ó Murchú (Louth, Sinn Fein)
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Mr. Murray's family is absolutely known to it.
Mr. Tony Murray:
Yes. You could not make it up. On the application process, all members will know about local authorities - I know Dublin very well. There are pockets of land that Dublin City Council owns but that often are sitting unused. They would not be ideal for apartments or to sell off because they are too small but they would be ideal to build the kind of units proposed but the HSE is standing in the way because it says it is a congregated setting and that is policy. I have said to the HSE I wished it would enforce other policies as well as it is enforcing this one.
Ruairí Ó Murchú (Louth, Sinn Fein)
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The obvious thing would be for the HSE to return to the Government and say this is not working for certain settings; we need to change the rules, adapt and be flexible like any plan in a sensible system.
Mr. Tony Murray:
Apologies to members of Fianna Fáil - well, not apologies but I never thought I would be quoting Deputy Willie O'Dea. It is really interesting, he said last week on the radio, "The Government has become beholden to process and allergic to humanity." Well done, Willie. That is exactly what we live every single day. Humanity is out the door. I do not even know if it does process very well.
Ruairí Ó Murchú (Louth, Sinn Fein)
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What does the plan that would work look like? I think it is very simple.
Ms Sarah Roarty:
Going back to what we were talking about earlier about the one-stop shop, there needs to be a mandated agency that links everybody together. What is happening right now is there are pockets of information and none of it is joined up. We need a mandated authority that includes the HSE, the Department of housing disability service, service providers, local authorities, families and the individuals themselves so that there is joined-up thinking and people can come together to make and formalise the plan. Realistically that is what needs to happen.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Very briefly, Mr. Murray.
Mr. Tony Murray:
I have a slight stammer. One could call it a disability - it has not really disabled me but it could. I have a friend who is blind, married and works as a civil servant in the Garda - he has a disability, as has Aoife. To think disability is one umbrella is a nonsense. The Minister, Deputy Foley, said one size does not fit all but there is a one-size-fits all going to private for-profit companies. That is the one size that fits all.
Ruairí Ó Murchú (Louth, Sinn Fein)
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We have questions for the HSE and the Minister, that is all I am saying.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Mrs. Riordan wants to comment.
Mrs. Jacqueline Riordan:
When my son at the age of three started at the Brothers of Charity in County Kerry data was collected on what he would need. When my son left St. Francis' Special School at 18, a HSE profiler came in and she took data. Where is all this data? They have the information. Why are they not acting on that data? To turn to another question, a parent at home in their 60s with a son or daughter in their 20s may want to look at a model of a granny flat at home for their son or daughter to live in the community so they could be there to supervise and get a home care package. The problem is we cannot get those home care packages. We were basically told by the HSE it does not do shared care. We are trying to put in interventions to delay the idea that you would like a plan set up for residential care for your son or daughter before you die. When you ask for help, that help is not there. That really needs to be addressed.
Ruairí Ó Murchú (Louth, Sinn Fein)
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It is very obvious we have a number of questions we need to put the HSE and the Minister in particular in relation to how they formulate their data and there is an absolute need for a plan that works.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I call Deputy Martin Daly. He has seven minutes.
Martin Daly (Roscommon-Galway, Fianna Fail)
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I apologise for being late; I am on the health committee as well and we were discussing vaccinations for older people, which is an important topic as well. I thank all of the witnesses for coming here today. We have been at this previously. My experience is there needs to be a cultural shift in how we deal with the transition for people living with disability who require full-time care from their families into independent living or into supervised independent living. It is clear to me as a GP on the ground that nothing has changed. It is not like it is not costing us an awful lot of money. I am not going to get into figures but some of the finance going to private care institutions is eye-watering. It is not beyond the imagination to allow parents to be involved in packages that would cost substantially less. I am aware of one particular example where someone has a son in his 20s who is very difficult, has non-verbal autism and has gone into one of these private institutions and there have been a number of HIQA reports into his care in that institution. The budget for his care was enormous. I do not want to go into material figures but his mother decided to give up work and they are building an extension onto their house. They were prepared to take on his care with a budget exactly 50% less than what the State is paying to some of these private providers. This is not a diatribe against private providers; there is a place for them but it appears to me from reading through that case that the lack of connection with the young man the difficulties he suffers, the things that trigger him; none of that is dealt with in this care model. Will the witnesses comment on that if it that has been their experience as well?
Ms Sarah Roarty:
Deputy Daly said he did not want to get into material figures but I do. I would love to see an analysis by each CHO region as to how much is being spent on private versus section 38s, section 39s and the HSE. It would be quite stark for members to see those figures.
Martin Daly (Roscommon-Galway, Fianna Fail)
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I said this on the floor of the Dáil - it was €750,000 for care to a private institution and the parents were prepared to provide a package for exactly half that figure. That is a substantial amount of money. It has to be spent but it must be spent not just in a cost-effective way but in a humane way that supports families to care in the most appropriate way for their loved ones.
Ms Sarah Roarty:
It is really important that we bring up the issue of multi-annual funding. The likes of section 38 and section 39 bodies are working just with individual year-on-year budgets so they cannot forward plan. When a person's care package comes up, it is seen as a profitable commodity to a private company. The section 38s and section 39s cannot compete.
Martin Daly (Roscommon-Galway, Fianna Fail)
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It is a highly profitable commodity.
Mr. John Atkinson:
On providing services that plug in within that setting, Ms Roban said if our sons or daughters are removed from their community, the life skills they have learned through us as parents completely fade within months. It has been seen many times. I do not know whether members of the committee had the privilege of seeing the "Prime Time" episode a few weeks ago in which one of our members, Antoinette Curtis, spoke. I will repeat what she said because she said it very eloquently: "I'm not going anywhere else. I'll be terrified anywhere else." Those words hit hard. That is self-determination.
What we are all proposing is a change in the model. Implement Article 19 in full rather than, as Mr. Murray referred to, weaponising one part of it, the de-institutionalisation. We all support that but it is about bringing everything, including cross-community support and inclusion. Nora's son Paul works in the community. You see him in the community and going into Tesco. They are familiar surroundings to him. My son is the same. He knows his own setting. I am from Lusk, north County Dublin, and my son thrives in his community.
We use the word "bed". As I said to Emer Higgins, "Please provide us with the housing, we'll go to Bargaintown and look after the beds".
Mr. Joseph Musgrave:
Cost is an important thing to look at. The HSE is building a nursing home at €800,000 per bed. The question of where the value for money is, whether private or public, is a germane one. The cost of putting someone in a nursing home, which is mostly why we are here today, is €366,000 per year, versus €92,000 to give them 56 hours of home care per week.
Martin Daly (Roscommon-Galway, Fianna Fail)
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I agree.
Ms Leanne Matthews:
In the latter stages of my recovery with regard to getting home, it was almost assumed my community and my family would be responsible for my care. Family dynamics have changed and families are not as big. Most family members work because they have to. I do not understand why the importance of what carers do is not acknowledged, even to the family members, not just to the person. Carers out there are passionate about their job and have made a difference to me; no doubt, they are making a difference to a lot of other people. The HSE needs to look at carers' wages, fuel allowance and packages. Many companies are now setting up in the private sector. People who go into caring do it because they want to; it is not for the money or whatever. It is because they want to and are that type of individual. They should be acknowledged for that. Do not let this slip away into a profit-making entity. You have amazing carers in communities. Invest in what you have. Keep those people who you have.
Martin Daly (Roscommon-Galway, Fianna Fail)
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Thank you, Leanne.
Liam Quaide (Cork East, Social Democrats)
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I commend our witnesses on being here today and on their poignant testimony. The Before We Die campaign in particular has given a national political focus to adults with an intellectual disability that did not previously exist. The suffering of the families the witnesses represent has been entirely in the shadows until recent months.
Mr. Murray has spoken in the public domain about how he and his wife Susan have cared for his daughter Aoife throughout her life and the abyss they face into with regard to where she will live in the future and what level of support she will have. What was it like in his 40s, 50s and 60s coping with these challenges and with the lack of support and uncertainty about the future? What lit the spark of the campaign at this stage of his life? How connected was he with other families in similar situations through those years? Did he have any idea of the scale of the crisis nationally?
Mr. Tony Murray:
One of the things that happens when you get older is you do not talk about if you get sick or die - you talk about when. When I turned 70, I suddenly realised I was older than my grandfather when he died. I am lucky I come from a family who have lived long on the other side, so hopefully I will still be here. There is that fear and the realisation there is nothing in place.
There is a thing that happens parents as well. When my daughter Aoife was at school, I often met parents at the school gate. There are parties and things going on so you are more integrated. Since she has got older and has gone to the training centre and now the day centre, I do not meet parents. Unfortunately, the service providers, using the capacity Act, will not talk to us. They know where we are when Aoife has a little accident - they definitely know where we are then - but they will not talk to parents. Very few of the service providers have forums for parents, yet the parents do all the heavy lifting. There is neither a statutory nor a voluntary space.
I will quote my wife Susan, who is in the Gallery. Somebody said it must be like a dark cloud. It is not a dark cloud; it is a black hole. As we know from the recent weather, dark clouds move away and we have a beautiful morning this morning. We, however, do not have that beautiful morning where we think, "God, isn't the weather great". It is a black hole and a black hole does not emit light - it sucks it in. We live in a black hole of nothingness. It is hard to explain to people what nothingness feels like. When I retired, many of my colleagues - and I was a colleague of Senator Clonan - asked if I was going to go on a world trip. I have been walking the Camino for years and do a week or so at a time. Susan loves me but not enough to give me five weeks. It is just not possible. People in work thought I would go on the five-week Camino. No, that is not possible.
The other words parents use quite a lot is "lucky". We are lucky we have transport. Not every parent in Aoife's centre has transport. We are unlucky today because Aoife's service is closed, so Susan had to bring Aoife up to my son's house and then get into town. I would have liked Susan to come in with me, to be here and to support me, but she was driving because we were unlucky there was no service today. It is a postal lottery, as we heard from Kerry. It is a rural-urban lottery and then it is lucky if the HSE will support a particular service.
Before the crash, our service provider, St. Michael's House, had five respite houses for adults. How many do members think it has now? One. That tells members how important we are. I am always saying it is the HSE. It is not entirely the HSE, but the HSE will not fund respite. Susan and I consider ourselves really lucky - not just lucky - that we got respite on a bank holiday weekend. Happy days. That is how desperate we are. It depends on luck and whim.
There is another thing that is important for the for-profit companies. We are not saying they are not good but one characteristic is a very transient staff because the pay is better in the section 38s and section 39s. One company brings a lot from Spain. They are trained but they are not here to stay, whereas we often find in the service my daughter is in that the staff are there for life or for a long time. They move around but are committed to the service. If you have a transient staff, that becomes a real issue.
Mr. John Atkinson:
In relation to respite, the model of how respite is delivered has a huge implication. For example, my son was offered one hour’s respite six months ago. It was the first ever respite he was offered, but it was almost 15 km away. My son's mother was bringing him to the respite, dropping him off and going back and collecting him again, and sitting in the car having a coffee. That is not respite. The respite is not for my son. The respite is for my son's mother or myself. That whole model of what respite looks like needs to facilitate the parents or the caregivers for the time that it is given, and it is broken.
Liam Quaide (Cork East, Social Democrats)
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If a person has a mild intellectual disability, he or she is not eligible, certainly in Cork-Kerry. That just excludes people even though they may have very significant needs.
Mr. Tony Murray:
To concur with that, the mother who left her child with the emergency care was offered respite. It was announced that she has been offered respite - happy days. No. This is hard to believe, but the respite offered by the HSE was a two-and-a-half-hour journey. She had to drop her off at 5.30 p.m. and pick her up the next morning at 9.30 a.m. That is the equivalent of driving from here to Waterford.
Ms Nora Roban:
In relation to what we were thinking, it was always there in the back of my head from the time Paul was born. I said it is years down the line and everything will be sorted, etc., but here I am 38 years down the line and, in fact, I think everything has gone backwards. We are still here now at this stage of our lives having to worry every day about what is going to happen. As Mr. Murray said, I am one of those parents who say - close your ears, Paul - that I hope he goes before me or before me and my husband or that he goes with us. The way it is at the moment and with the width of this crisis, the thought of that is eating me up inside. Thousands of parents are the same. It is absolutely cruel. People just do not have any idea. That has always been there, however. There is no doubt about that. Wondering what will happen is always in the back of your head.
Mrs. Josephine Keane:
On the point about respite, I agree with the earlier speaker. We have to think of it more creatively. We have to think of it in terms that, absolutely, it is a break for parents and for the young people themselves and a chance for them to meet their friends, but it is crucial for parents to be able to continue to do what they are doing. One night or two nights per year is not enough. All of us would not be expected to survive on two nights or two days per year off from our jobs but this is what it is for these parents. It is 24 hours per day, seven days per week. It is a job because it is constantly in your mind - the care of your child, again, depending on the circumstances. As we said earlier, it is not a one-size-fits-all approach. We have young adults living with parents who have huge complex needs and who need full care, medical care and everything. Parents are doing that at home, so respite has to be something that is available. We need to broaden out the thinking.
I mentioned in my opening statement Saint Mary of the Angels in Beaufort, which was a residential centre for people with intellectual disabilities. The numbers have gone way down there because people have moved out with the decongregating or people have passed away, etc. That is one example. If you or I go on holidays tomorrow, we can book somewhere like a well-known holiday resort in Ireland that has opened up or we can go abroad. Why can we not have centres like this that are a holiday setting for our people with special needs? It is not congregated settings. I do not book into a campsite in France for two weeks and think I am in a congregated setting. I am on holidays with like-minded people. Why can our children not have exactly the same access? Why not have that? I am sure there are other centres. I know there are other centres around the country which, because of decongregating, are now vacant and could be used. We have to consider outside the box and a broader picture.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms Keane. We have run out of time on that slot. Despite what I said earlier, I am going to take one extra person before we have the break. I call Senator Harmon.
Laura Harmon (Labour)
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I thank the Cathaoirleach very much. I welcome everyone here this morning. I thank them so much for all their valuable contributions. It has been a really informative session. I and Deputy Sherlock, our health spokesperson in the Labour Party who is here as well, have met some of the witnesses previously. It is very clear what they have outlined in terms of the situation in Ireland at the minute. We talked about humanity. It is absolutely inhumane that this is being allowed to continue and that it is happening at the minute. That is very clear. It is very worrying as well to hear that they feel things are going backwards. I want to thank them because they have really outlined the situation on behalf of organisations but also personally. I welcome Paul and those in the Gallery here today also.
Mr. Murray spoke about the one stop shop. I will delve into that approach a little bit more. He also talked about how he feels he is in a black hole and it is darkness. I will ask this question: how many Government Ministers, Departments and agencies does it take to turn the lights on or change the light bulb? It seems that he is going around from pillar to post. What is that experience like? How many different agencies and Departments do people have to go through in order to get the home care and housing supports that are needed? What is that journey like?
Mr. Tony Murray:
All of us would attest that when you have a child with special needs, nobody knocks on the door and asks what we need when they turn 18 or whatever. Nobody knocks on the door, so we have to ask and fight and, in a lot of cases, we do not know where to ask. A lot of people who are in the service have no idea who their social worker is. Who the social worker is often becomes like the fifth secret of Fatima. People just do not know. There is not this feed of information. On the idea of having a single point, whether it is an agency or whatever it is, it needs to be a single point that co-ordinates the information coming from the service providers, which will show the types of needs as they know our children, the HSE, which will have to fund the service, and the Department of housing, which I assume will have to build the housing. However, when we talk to Dublin City Council, as we have done, and the council in Cork, when we mention disability, they think of wheelchairs. That is the problem. It is something other than that. Again, it is not working because there is not, unfortunately, a forum. We are all saying the same thing. We are now beginning to meet, but there is not a forum for parents to meet, so it is good for us as well that we are here in the one room and we get to know each other. There is not that parent voice. Going back to the capacity Act, that has locked the parents' voice out of it because of the HSE element. A ridiculous situation is how it has been weaponised and this gap in information.
My wife went with Aoife to meet a dietitian and the dietitian would not look at or talk to Susan. She spoke to Aoife about her diet. She said Aoife should eat protein. I am sorry; could someone say to any adult of any age that they need to eat more protein? We have this ridiculous situation, which has been weaponised, with the absence of information. Then, as I said, when we apply to Dublin City Council, in our case, it goes into a void and goes nowhere. My son works with Focus Ireland. He asked what happens when somebody applies and he was told, "I do not know". There is no section in the local authorities to deal with disability, so it just sits there as another housing application.
Mr. Joseph Musgrave:
It does not just stop there, unfortunately. In Leanne's case, she gets assessed as needing home care then gets sent to someone else to say it is unavailable and that she has to go to a nursing home. People then get told it is going to be a wait of two years and then they can go home. If people want to go to the local rehab or physio and they need to use a wheelchair or walking aid, the bus stop is not level access, so they cannot actually get off at that stop in Blaney because of it. Then, things happen by happenstance. Leanne might talk about what happened during Storm Éowyn because she was sat in the cold.
Ms Leanne Matthews:
During Storm Éowyn, I was sleeping on an air mattress. I was left without electricity and as a result, the mattress deflated, the heating would not run and, to add insult to injury, my water went off. I was like that for two weeks.
My carers still made the effort to come in. It was on foot of the initiative of one of the carers that this came about. She told me that she thought I should be entitled to emergency respite care. I did not know, nor did around else around me. My young adults did not know there was such a thing, nor did I. That carer then spoke to her supervisor and, by the end of that working day, I had received an offer for a place in County Cavan, which I was delighted to accept.
While I was in the nursing home, I was taking up a bed that an elderly person was waiting on. The whole system is bonkers.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I was waiting for that word.
Laura Harmon (Labour)
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I completely agree with Ms Matthews; it is bonkers. It is infuriating to hear the hoops people have to go through and the lack of clear information for people and families. I have one follow-up question. We spoke about competing between private and public care, the under-funding of section 38 and 39 organisations and the need for an emergency fund in the budget. Those are all very much noted. One thing that strikes me is the disparity across the country between different counties and areas. Mr. Musgrave mentioned the south west and used personal assistance hours as an example. The average in the south west was 5.5 hours versus 12.5-----
Laura Harmon (Labour)
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Okay. The average home care support is 12 hours.
Laura Harmon (Labour)
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Why is that? Is that due to staffing levels and funding?
Mr. Joseph Musgrave:
It is a mixture. There is both a lack of funding and a lack of a policy framework that allows us to see who is availing of the national scheme. The budget for older persons has grown by 110% over the past six years, while the budget for disability home care has grown by 49%. As the need is being identified in disabilities, the funding is not keeping pace with the number of people who need it. That is why so many go to nursing homes.
Mrs. Jacqueline Riordan:
While parents of a young adult with special needs have a CDNT team before he or she is 18, they have no liaison officer they can contact if they have a problem after the age of 18. In adult services, there are no multidisciplinary teams. They do not have a speech and language therapist, physiotherapist, psychologist or even a social worker. If parents have an issue, who do they turn to?
For example, take a family who are up all night with their son or daughter who has chronic insomnia. They have been doing this seven days per week for seven years. I know of such a case. They want help but they cannot get it. What do we say to that family? How long are they going to continue on that journey? When is burnout going to happen? When will there be a crisis?
Where is all this money going for disability because, on the ground, parents are not seeing it? We are not getting the help. We are trying to prevent our children and young adults going into residential care. Even if they have to, that care is not available. There has to be some intervention and common sense. We have to go back to what is real and what parents are experiencing. We need the help. We need to see this disability money that they are on about investing. We are not seeing it on the ground. Parents are absolutely burnt out. They are exhausted and need help. They are asking for the basic rights. They are not asking for a miracle but, rather, the basic rights. We are not seeing it in Kerry. I cannot speak for any other county, but we are definitely not seeing it in Kerry.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I suggest we have that five-minute suspension we spoke about. We will come back after that. The first person to speak when we return will be Deputy Keogh.
Keira Keogh (Mayo, Fine Gael)
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Gabhaim buíochas to all our witnesses this morning. This is probably the busiest session we have had in this committee, which shows the level of importance not only members of the committee but also Members right across the Houses treat this subject. It has been a lively discussion this morning, which shows that we are not all on the same page about how we get to the end destination, but we all want to improve things for people with disabilities and their families.
What has struck me as I have been listening is that we all understand there is no one-size-fits-all solution. Ms Roban spoke passionately about Homes For Us and I would love to talk to her more about it. I can see how such a model would work in cities like Dublin, Galway and Cork. In Mayo, however, it would probably be a step backwards and create almost congregated settings. I acknowledge some of the witnesses are shaking their heads at that, but I am not sure how many people in Mayo we could house in a village while allowing them all still to be in their own communities. For example, I know of two boys on Achill Island who wish to live together in a shared apartment. There is another boy in Westport who wants the local authority to build him an apartment beside his parents’ house some 5 km outside of the town. I might then have another three individuals wishing to live within Westport. Homes For Us is a fantastic pilot and I would love to see it rolled out in a number of cities and big towns, but we still need other models that will look different in different places.
Recently, Horizons Cork was before this committee, and it provided a good example in this regard. Mr. Murray talked about a one-size-fits-all system. I spoke to the Minister of State, Deputy Higgins, after Horizons Cork’s appearance at the committee because its example stood out to me. It has a housing person from the local authority, a social worker and the disability services all on board. Working collectively, Horizons Cork is starting to make movement. I am not sure whether we need a national one-stop shop or a system and process rolled out to each local authority. I ask for the witnesses’ thoughts in that regard.
I am thinking of a fantastic girl in Castlebar who had a catastrophic injury that left her paralysed but cognitively unimpaired. It was a fight for her to get a personalised budget so that she can live the way she wants. There is definitely not a one-size-fits-all approach.
I wish to hear more from Ms Roban about how Homes for Us will guarantee community engagement. The reason I am thinking about that is because I am also thinking of the autism classes, which were designed to provide integration within schools. There has definitely been improvement in that regard. I worked in disability services for 20 years and there has definitely been improvement because kids go down for a snack or do PE or art. For the first decade of autism classes, they were plonked beside a school without any integration. Those children were not seen in the Christmas play or, as Mr. Murray said, they were not invited to birthday parties, etc. We are now starting to see that integration. How will Homes For Us support that integration piece within the community? I also ask Mr. Murray to elaborate more on the systems and processes.
Ms Nora Roban:
The integration is natural because they are already in the community and availing of the day services.
The people in the Balbriggan pilot are already in day services there. They are already in the community and they are already going to day services and using the shops, supermarkets and coffee shops. They are happier doing this with their own peers. Paul is a different person at home. If he was sitting here, he would probably not speak, but when he is out with his peers, he is a totally different person. I ask myself, "Is that Paul?" He is much happier. They are all much happier and they support one another.
We were geared towards integration in school years ago when Paul was younger. I remember sitting on a committee with Finian McGrath and people like him. We were led up a garden path and it was a complete and utter disaster. They had nothing in common. The schools are probably much better now with SNAs. To me, integration is Paul going in and out of the shops and people saying "hello" and asking him how he is, having a social side with his peers in the evenings and, when he goes out the door in the morning, saying "hello" to his friend Stephen on one side and Mary and Johnny on the other side. It makes common sense to us parents and to most of our sons and daughters. Paul thinks we are going to live forever so he does not get the other side of it.
Keira Keogh (Mayo, Fine Gael)
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Does Ms Roban see the 15 houses in an estate of 30, 50 or 70 houses?
Ms Nora Roban:
It could probably be a bigger estate. We have seen the models for the old age pensioners. One of our members, Stephen, asked why they cannot have something like what the old age pensioners have. That is what they want. They want to live together. They would not all be in one house. We are looking at two or three people in a house, and they would choose who they want to live with, being supported. Some of the houses may not need staff but they may need someone on site. We are looking at staff housing on site also. There are members who will need full-time care in the house when they are there. There must always be staff on call. We are on call 24-7. If Paul is in a day service, we are on call, and if he is respite, we are on call.
Keira Keogh (Mayo, Fine Gael)
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There is something like this in Bailis in Meath, with a staff house. In the time left I ask Mr. Murray to speak.
Mr. Tony Murray:
We are doing a survey as we speak and we have received nearly 800 answers from parents. Of those who have responded, 84% favour a cluster-type situation. This is what parents want. We can say we must also consult the people who have an intellectual disability and physical disability, but in a lot of cases there is no way we could consult them. We could not consult my daughter as she does not have the intellectual capacity, so it is the parents who have to do it.
It is a bit like the parable in the Bible. I never thought I would be quoting Deputy Willie O'Dea and the Bible but here we go. Who is minding the baby Jesus? There is a huge element of who is minding the baby Jesus and nobody is. Effectively, the Department of housing has no history of engaging with the disability sector. It does not have a section. The HSE does not have a section on housing. The service providers have been squeezed out of it and demoralised so they have given up the ghost. We could say that in Maslow's hierarchy of needs, housing is at the top, but if people have a disability, it is at the bottom.
I am not being selfish but pragmatic when I say we need an immediate emergency response for the people who are in their 70s and 80s. It is more than what the Government has said in its figures; it is much more than this. I did a very simple survey in my daughter's centre in Santry.
Maurice Quinlivan (Limerick City, Sinn Fein)
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We are going to run out of time.
Mr. Tony Murray:
There are 47 people in it and ten are in residential care. The average age is 38. We can extrapolate the average age of the parents from this. The people in the centre all have significant care needs. They would all need to be in highly supported housing. This is just in one centre. The HSE cannot seem to get its act together, and not only the HSE, to get these figures. The agencies and the service providers have the figures but they have been excluded. It goes on and on.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I have to be very strict on time because other members will not get in if I am not. It is not fair to the people who have come to the meeting.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank all of the witnesses for being here. This is my first day on the disability committee.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I should have welcomed Deputy Dempsey; she is very welcome.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank the Cathaoirleach. It is probably a baptism of fire given what we are discussing, which is a very difficult issue, but it is a great privilege for me that the witnesses are the first I have met at the committee. I previously met Mr. Musgrave from HCCI at a facility in my constituency in Navan. I met clients like Ms Matthews there. I met Hilary and I met Bridget, who is a carer. As Ms Matthews said, the service that carers provide is a vocation and they should be minded and cherished, as I know everyone in the room believes.
We could probably learn a bit from Mr Musgrave's communication skills during the recent blockades and the advocacy he did for the sector during that very difficult time for them as they tried to get out and provide care. I thank him for it.
I have several questions. Will Mr. Musgrave expand a bit more on the delays to the national home care scheme? What engagement has been going on? What does he need? I also want to ask Ms Matthews about her time in the nursing home. I am sure she was provided with a good service and, again, I believe the staff there have a vocation. Does Ms Matthews think it slowed down her recovery? Does she think it had adverse effects?
Ms Leanne Matthews:
Absolutely, yes. When I came home I was encouraged by my young adults to do more walking and they escorted me outside. The nursing home chipped away at me mentally. Due to a duty of care, they were not necessarily happy with me getting up and mobilising by myself. I was escorted to and from the bathroom. People become really reliant on this level of care and then they go home and do not have it. Going home was great and it was what I wanted. I apologise; I am wandering. I hope this answers Deputy Dempsey's question.
Aisling Dempsey (Meath West, Fianna Fail)
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Yes, it does, and I thank Ms Matthews.
Mr. Joseph Musgrave:
I thank Deputy Dempsey for her support for home care. On the national disability scheme for home care, we started discussions three years ago and it seemed to advance. Home care is technically known as home support and it offers the supports I outlined earlier. The plan was to put in place a national scheme and align the rates paid for this work with that for older persons so that there would be parity and we could start to set up a workforce strategy. We have never had a social care workforce strategy in this country to chart pay rates, a pathway towards pay increases and funding for mileage. Then discussions got bogged down. When I last met with the Minister of State, Deputy Higgins, several months ago I got the somewhat disappointing response that it is with the HSE to operationalise, that dreaded word and phrase that many on this side of the room are familiar with.
We understand that funding has been provided to stand up the scheme. We understand that procurement in the HSE is ready to launch the scheme. We are unclear exactly what the final blockage is because neither the HSE nor the Department of disability has told us what the final blockage is. It has been in this limbo purgatory state for 18 months, which is somewhat disappointing. We cannot get a clear answer as to why it is so delayed. Some support from committee members to get the answer and put pressure to stand up the scheme would be very welcome.
Aisling Dempsey (Meath West, Fianna Fail)
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I thank Mr. Musgrave. My next question is for Ms Roban. We are probably all agreed that her proposal and plan for the Balbriggan area is what is needed. We cannot help but wander past the pilot and wonder, as Deputy Keogh asked, how it will work elsewhere. How will it be rolled out? I do not want to talk about cost because it is very necessary but can we determine how much it does cost? What are the basic services? Ms Roban spoke earlier about staff being on site and having staff accommodation.
What are the very basics that would be needed in a setting of 15 houses?
Ms Nora Roban:
We are at the early stages of this. Staffing-wise I do not know because I would have to look at all the members, that is, our sons and daughters who we know are interested in it. It would be a hell of a lot cheaper than it currently is because everything that the not-for-profit sector does is a hell of a lot cheaper than it is for the for-profit sector.
Mr. John Atkinson:
We are very much hoping with the Homes for Us pilot that we are not in a situation where this becomes a stand-alone monument to something that did not happen. Policy needs to change, most specifically in relation to the full roll-out of Article 19. I am not going to list them all, but there is independence, control and non-isolation and this ensures continuity when the parents are gone. We need policy change and legislative change in conjunction with this. We do not see the Homes for Us model as being one-size-fits-all. Each individual project would take on board the members - in our case in our charity or our club - to canvass them about what their needs are so that is done on a case-by-case basis. There will be costs but nowhere near the costs of the private providers at the moment, which are astronomical and in some cases immeasurable. What is key here is that while we have this pilot and it is vitally important, it must be done in conjunction with overall policy change to allow this. As I said, in my area of Lusk we have an age-friendly community set up at Kilhedge Lane and it is exactly the model. There are 15 houses which are all ground floor and accessible to people with physical disabilities and there are services plugged in for those with elderly needs. It would be the same for those with intellectual disabilities. My son is in second year at Gormanston College. It is a fantastic school. With his service, he gets collected there every morning so it is not as if he is sitting there from when he is that age. When they become adults they will go to their services, which could be Prosper Fingal, and they will get taken to and from there, so it is not just the case they are going to be sitting there. It is that the services are there and available for what they need and that they are bespoke to their needs, because that is key.
Ms Nora Roban:
It will be different in every area. The problem with decongregation is that the HSE will not fund staffing for more than two houses side by side. I think I have identified 20 young people in Balbriggan who are ready to move into their own homes within the next two to three years. That is long before we go, I hope. That is so they will be in and settled and so the staff know their ways and that we as parents can still tell the staff what works and what does not, etc. Most importantly, it is about being in their community with their peers.
Aisling Dempsey (Meath West, Fianna Fail)
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I have yes-no question.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Okay, just be very quick.
Aisling Dempsey (Meath West, Fianna Fail)
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Thank you. Earlier Mrs. Riordan mentioned profiling and said that at three years and 18 years data was collected from her and she wondered where that data had gone, which seems a very logical thing to do. Has that profiling been everyone else's experience?
Séamus Healy (Tipperary South, Independent)
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I thank everyone for the detailed presentations. There is a social contract between the public and the State and that contract, if it is not broken, is at least at breaking point. One of the areas where we see that is disability services from early childhood right to the end of life. It appears from what we have heard this morning, and what we as Oireachtas Members hear from parents in situations like this, that the State has to a large extent abdicated responsibility for the whole area.
South Tipperary seems very similar to Kerry in that there is little or no respite. You can be approved for home care but you might not get it for a month, six months or even a year or you might only get part of what you are entitled to. As for residential care, there is little or nothing. Then there is the way services are being provided - that is, private for-profit versus the public service - and the cost of that. I come across parents who are absolutely frustrated daily. They feel they have to fight for everything. They are stressed by this whole area. One of the most glaring and frightening statistics we heard this morning was from Mr. Murray, who referred to 500 families where parents in their eighties are looking after a disabled child. It even frustrates public representatives because daily we are being asked to make representations to do our best in relation to individual cases and, to be perfectly honest, there appears to be little or nothing our interventions can do, which is absolutely frustrating.
Are both the Balbriggan group and Mr. Murray's group looking for the same thing? How does that pilot look with regard to the range of services that might be provided in that little community? Are the witnesses talking about providing a whole range of services there or will they be provided in other areas of the community? I imagine very many families would like to look after their child while they are in good health themselves and of an age. I am just wondering - this is probably for Mr. Murray - at what stage one needs to start the planning for later residential care.
Mr. John Atkinson:
I thank the Deputy for his question. I can speak about my situation. I have been receiving dialysis treatment for 11 years. That question is there with me every day and it was there before I became sick, when my son was diagnosed with his additional needs. It is with us at all times. The Deputy asked at what stage. It is their whole lives, from the day they get their diagnosis and the day you know they are not meeting their milestones. That is when it happens. As for the question about the services, many of the services they plug into are day services and again they come to and from the setting, so it is not as if we are talking about all the services being provided within the homes for them. This is their home and their community and they will go to their day services, and in many cases our members work in their community. That is how it would work.
Ms Nora Roban:
It is basically a home-from-home setting so when we get sick or we pass away they are in and settled before anything happens to us. That is the key because we do not want a double whammy for our sons and daughters. The way it currently is means that there is a double whammy when the parents pass away and their children are taken and put wherever there is a bed. They have to deal with mam or dad, or both, being gone and then with being in an environment they do not know. The whole idea of Homes for Us is that everyone should be back in their community in a housing setting with support, where they know where everything is and where they go to their day services, etc., as Mr. Atkinson said.
Ms Sarah Roarty:
What is really important, as we have articulated today, is the personal transition. Of course we love our sons and daughters but we need to see they are safely and appropriately housed before we get sick. We see crisis situations. I know of one lad who had Down's syndrome and was in his community, was able to motor around himself and verbalise, but he completely regressed and he never spoke another word again because overnight he was plucked from his home, community and day service and put into a crisis situation. The lad never spoke a word again in his life. We need a transition plan from the age of 16 in order that by the time they are 18, we know what is going to happen to our child and can support them in moving through that process and into a safe and supported environment.
Gillian Toole (Meath East, Independent)
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I thank the witnesses for meeting us and making the Trojan effort to be here with everything they have to put in place at home to be here. It is great to see Paul again. He is the audiovisual room celebrity. I thank the groups for the presentations. Three of the groups presented to us previously in the audiovisual room. I thank HCCI for the survey results and Mr. Musgrave for the policy proposal.
Many of the questions have been asked already, so I will try to confine myself. I would like to mention one group from County Meath, Special Hands, and the journey we went on, which is by no means finished in the quest for more respite places. This may be helpful information. Meath County Council, in conjunction with Enable Ireland and Cheshire Homes, has some apartments in Bailis in Navan. It is not quite a defined model but it is a limited example of the local authority engaging with disability services and service providers in Meath. It is by no means enough. We need way more. Next week, by way of interest, we have the City and County Managers Association in with us. I think we may have the Department in as well. The timing of this meeting and the witnesses providing such valuable information will inform us for the next meeting. I think it is fair to say that on this committee, from the other areas that we have worked on such as inclusion in education, the review of Part 2 of the Disability Act and the assessment of need, there is a commitment across the board to do better and to try in this term - please God we get to full term - to actually produce results. It is the least the witnesses deserve and it is a long time coming. I am not making any promises, but from how we have collaborated thus far I am hopeful that we can try to achieve meaningful results for the witnesses' families.
Will Mrs. Riordan and Mrs. Keane elaborate on what they consider the best forms of respite, whether it is the timing or the content of the respite? Shared support was mentioned. When we get to the setting, whether it is like the age-friendly model or not, what are the best forms of shared supports? The witnesses can divide the time left among themselves through the Chair.
Mrs. Jacqueline Riordan:
To answer the Deputy's question on respite, I will give an example. In south Kerry, we have a respite house called Cúnamh Iveragh. It is open from Friday to Sunday. It is running at half capacity. It is closed for the ten bank holiday weekends in the year. There are 35 families on the list to use this facility. If we have 35 families and only 36 weekends in a year they are only offered one weekend a year. Do the maths. I would like it to be open on the bank holiday weekends because it would give an extra ten weekends that could be used. At present, it only opens from Friday to Sunday so increase that and open it seven days a week, if possible. I asked whether it was a staffing issue or a funding issue and I was told it is a funding issue. The staff are available for it to be open seven days a week. Also, we need more respite houses in Kerry to meet the demand. As my colleague said a feasibility study is now being done on St. Mary of the Angels in Beaufort. There are five vacant houses there that could be utilised to open respite in Kerry. It is a safe setting in the community. It has a lot to offer. It has a hydrotherapy pool. It has access to Killarney. There is also access to day services which are in Killarney. There so much out there and it is safe. There could be an organic garden and market to bring the community in. We are talking about inclusion so we must look at different models. A model in a city might involve ten or 15 houses. That would work in the city but in the country it is totally different. We have to deal with complex needs and we have to deal with skilled staff. As parents we are not asking for a lot but we would love to see change and a dent being made in the system because we do not see change at the moment.
Mrs. Josephine Keane:
In relation to respite, we have to look at it in the bigger picture. Some people with fewer needs are going to need respite and then people with much more complex needs will also need it. Respite has to be individualised, with different settings for different people. That is really important. As Mrs. Riordan said, what we have is not sufficient. We need to increase that, at the very least to start with, to keep people going. As I said earlier, we think outside the box and have different ways of providing respite for families. Again, one weekend a year is not going to sustain anybody, with the level of work support they have to provide. Also, for the young people themselves, is once a year enough to be going away with their friends and doing something outside of home? Of course it is not. It is nowhere near enough. A number of years ago, I was involved in setting up children's respite in north Kerry, where it had never been before. It was overwhelming to see the need that was there when we set it up.
Mr. Joseph Musgrave:
There is a phrase in politics that the first rule of politics is learning how to count. We seem unable, in this sector, to learn how to count. We do not know how many people are waiting or how long they are waiting for. We barely know where they are waiting and how many need respite. That failure to be able to count means we cannot articulate to our own people what it is they can avail of, where they can avail of it, and when they can avail of it. When I ask the HSE and Government Departments this question, I am told that data is being gathered. It is somewhat astonishing that we still cannot learn how to count in this sector.
Mr. Tony Murray:
When my daughter goes into respite, she is required to sign a contract. HSE rules say she has to sign a contract. She has the intellectual capacity of a four-year-old.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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I welcome everyone and I thank them for the evidence they have given. I especially welcome the people from my constituency, Ms Roban and Mr. Atkinson, and, indeed, Paul, Paula and Fran in the Gallery.
If a report is being produced I want to offer my assistance to the Chair in that regard. The housing committee should be heavily involved in the production of any such report. I note the Chair is nodding his agreement to this. At this meeting, hearing from the witnesses is really important but we must also come up with focused policy solutions. That is what Ms Roban has brought to the committee in terms of Homes for Us. Ms Roban is a constituent of mine and I have seen at first hand what she has built with the Remember Us social club. She has not done this on her own but she is certainly the driving force behind it. It is a fantastic facility but this next step will require more than one driving force. This will require a willingness on the part of the State, a willingness that this Government and previous ones have not shown. I hope the Government will show it because what I am hearing from Before We Die is that the alternative to action now is very expensive and also traumatic for the individuals involved.
In terms of the congregated settings, we have had that discussion. I represented psychiatric nurses for years. I know what those congregated settings were. Nobody wants to go back there. I also know, from speaking to Ms Roban, Mr. Murray and others that that is not what people are proposing. I am a parent and, the same as every parent in this room, I want nothing more than for my daughter to be able to live her best life. That is all anybody wants. There is nothing complicated about that. There is nothing groundbreaking about that. That is simply what people want, and to have the supports that are necessary to be able to do that.
My questions are mostly for Ms Roban and Mr. Murray. There is a resistance to the congregated setting model, which we get, but have they given any thought to the hub and spoke model that is used in Scotland? There is precedence out there we will be able to build on. Will Ms Roban and then Mr. Murray elaborate on that for me please?
Ms Nora Roban:
I did not know about the model in Scotland so that is something I have to start investigating when I go home. I do not know what to say. Homes for us is a no brainer to me. I have seen the success at Remember Us and how the adult members interact with, support and help one another and how happy they are to be in their own communities again, I have to keep emphasising that, and with their own peers. That is the absolute way forward. We do not want to be left again in ten years - the Minister of State, Deputy Emer Higgins, probably will not be here anyway - with somebody coming back and saying we are still at the same stage, nothing has moved on and it is still crisis, crisis, crisis and wait until there is a crisis.
Mr. John Atkinson:
That hub and spoke model is very much an assisted living community hub. The living part is there and everything else feeds out to that so that the needs are provided for now and into the future allowing us to go back and be what they are which is their parents, not their carers day in and day out. That is what it is. It is a full-time job and as has been said at many committees and in the Chambers, my God if we were paid for what we do the costs of that for the State would be astronomical.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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It would be into the billions of euro. I am a huge supporter of homes for us and I really hope there will be funding in the budget for it. I hope funding goes to the local authorities to enable this project to happen.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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It was.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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I know; my uncle is the caretaker there.
Mr. Tony Murray:
It is closing down to become a residence for old folks. I am elderly and the elderly can be congregated with people. There is this madness of a centre that was built, let run down and is effectively being sold off, I do not know to whom, but it was built by the State. I the area where I live, in Griffith Court, there is a unit for adults with autism which is that "spoke" and it is there. What Ms Roban is proposing is not new.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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The model exists but the alternative is what is so hard for people to-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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Sorry, the time is up, Deputy. I have to be strict on this. Deputy Cahill is next and he will have five minutes.
Louise O'Reilly (Dublin Fingal West, Sinn Fein)
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I thank Mr. Murray.
Michael Cahill (Kerry, Fianna Fail)
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I thank the Chair and welcome all of our guests and thank them for their statements and responses up until now. I extend a céad míle fáilte to the Kerry guests here today, Ms Josephine Keane and Ms Jacqueline Riordan. I thank Senator Margaret Murphy O'Mahony for organising that for me or helping me out with it. There is a chronic shortage of respite beds and services in my county and throughout the country. It is important to say that while we all are familiar with the parents and advocates, as public representatives, the general public that would not be so familiar would be absolutely shocked by the shortcomings in the services. I have met many of the parents in County Kerry and am acutely aware of the pressures they are under, particularly in regard to respite. It has been outlined by the HSE, St.. John of God and a number of others that there are eight beds. If there is a family event such as a wedding, holy communion of confirmation, or a family death, it is almost impossible to get some bit of relief, cover or respite. That is not good enough in this day and age.
I want to say as well that Ms Keane raised the matter of a centre of excellence in St. Mary of the Angels. I raised that in the Dail. It is a fabulous site. It wa donated by the Doyle family many years ago for children with disabilities. The residents there today are all adults. It is a case that either they move out of they pass. They are not being replaced. It is a fabulous centre in the heart of County Kerry, in mid Kerry. There is already excellent services there. There is Saint Francis Special School, a hydrotherapy pool as Ms Riordan mentioned, and there are speech and language therapy, adult day services, physiotherapy and sensory rooms, etc. We should push for there to be centre of excellence there.
I am conscious of my time. We have been campaigning, including the parents and advocates, for as long as I can remember. I have been in politics since January 1990 and there has been no improvement whatsoever. We are still asking and campaigning for the same services, be it home care or be it respite. Will Ms Riordan elaborate on the homecare package she referenced. I know she has said a bit on it already but maybe elaborate on shortcomings there a bit more. She mentioned as well, and I am getting that also particularly since I became a TD, the gap between going from childhood to adulthood; the 18-year-olds. There are huge issues there. The Taoiseach and Tánaiste have already said that the two biggest priorities of this Government will be housing and disability. Ms Riordan mentioned funding and staffing. I am not sure which it is, but it is supposed to be the biggest ever budget for disability. Now is our time for action. If is it in order, and maybe it is not, can we invite-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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The Deputy has one minute one minute left for answers.
Michael Cahill (Kerry, Fianna Fail)
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-----the committee to come to Kerry at some stage. We need to do a lot more. A year and a half of this Government's term has gone. The very last question I want to ask and, it can be left go to the very end----
Maurice Quinlivan (Limerick City, Sinn Fein)
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Deputy, in fairness you have 50 seconds left and I will be strict on this.
Michael Cahill (Kerry, Fianna Fail)
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What has happens after this meeting? Does it go to the Minister or the senior officials?
Maurice Quinlivan (Limerick City, Sinn Fein)
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We will do a report on a number of the submissions. Ms Riordan has 40 seconds if she wants to come in there.
Mrs. Jacqueline Riordan:
On the home care package, if you have a parent who is trying to meet a disability manager, you are on the phone and ringing them five days per week and not getting an answer as no one is answering the phone. You have parents who are not sleeping, are up all night, and might be looking for say three nights of overnight care and they cannot get it. They cannot access it. They do not know who to go to. There is no social worker, maybe, involved in the adult service in Kerry. There is no liaison officer. There is no information and parents are just left to their own devices and it is inhumane.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms Riordan and we have just run out of time. We will move on to Senator Clifford-Lee.
Lorraine Clifford-Lee (Fianna Fail)
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I am conscious that we have very little time. It has been an absolutely eye-opening and fantastic discussion but I would be very eager it does not fall to the wayside and that some results come from it. There is lot of energy and passion in the room and I really feel we need to co-operate with the housing committee in order to move this forward.
There is a clear housing need. I know Ms Roban and Mr. Atkinson from Balbriggan and the work they do in Remember Us is just fantastic. They have built it from the ground up and what they are suggesting is the next stage, the next logical step, for the families involved. I can hear the distress of all of the witnesses, and it is an appalling vista. I am a parent and to hear Ms Roban say that a lot of parents hope their child goes before them. It is such an unnatural thing for anybody to say and just shows how difficult things are.
I think it was Ms Keane who said that we do not have a clue. Those of us who are not in this situation do not have a clue, really, of the realities and the things the witnesses have to think about.
They have articulated that really strongly here today.
Ms Matthews referenced the fact that family make-up today is much different from what it was 30 or 40 years ago. The model of care we have is outdated and patriarchal. We need a cultural shift on that. I have spoken to my colleague Senator Clonan previously about the care options that were presented to him and his family. They were told that his son has a sister to mind him. It is always the assumption that there will be a sister or some woman there or some random person in the family to take over the responsibility and that should be good enough. It is not good enough. It was never good enough. It is not about the person with the disability, who should be at the centre of this. That kind of response is not filled with dignity. We need a cultural shift. I can guarantee the witnesses my support and that of my Fianna Fáil colleagues Deputies Martin Daly, Dempsey and Deputy Michael Cahill to move this forward. I am particularly supportive of the homes for us model that the witnesses are proposing. It might not be a model that will suit every area but it could work very well in urban areas, and we need to explore that and get funding for the pilot.
Ms Roban has given a very good explanation of their vision, which is about keeping young people in their own community with their peers, living the life that they have lived with their families but moving on. She said that there are a number of families in Balbriggan would be ready to take up places. The proposal or model that she has put forward comprises 15 houses in a community. I am sure there will be demand for much more than 15. How does she propose that those houses would be allocated? At a later stage, if a space in one of the houses becomes available, how would it be allocated? She has spoken about particular people wanting to share a house with their friends. If a space emerged at a later point within a particular house, how would that space be reallocated? I invite her to give us her ideas on that.
Ms Nora Roban:
We have 400 families in Remember Us who will all be coming up the line. There are around 150 adult members in Remember Us. The first lot would choose who they would live with. That is the plan. As I said, we are at the early stages on this. On another estate we would probably need another pocket of houses and then another because there are so many people coming down the line. I am only speaking here about the members of Remember Us and we are probably only the tip of the iceberg in terms of the people in north County Dublin with disabilities or special needs. The initial pilot would be for the 15 who are looking now to go in and to be in and settled before their parents-----
Mr. John Atkinson:
Hopefully, then, that would take off, from a local authority point of view where a needs-driven approach would be needed. Effectively, this needs to be a needs-led proposal whereby there is a register of people who require this accommodation before they turn 18, so that these things can be put into place in advance. We need a strategy so that this does not happen in a crisis situation.
Lorraine Clifford-Lee (Fianna Fail)
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Does Mr. Atkinson envisage the allocation of places being done in conjunction with the HSE?
Maurice Quinlivan (Limerick City, Sinn Fein)
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I am sorry, but the time is up. We have actually run out of time but I will allow Deputy Danny Healy-Rae and Senator Kennelly to come in for one minute each. And just to clarify, I would go on for several more hours if I was allowed but another committee is due to meet here now.
Danny Healy-Rae (Kerry, Independent)
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I appreciate the opportunity to speak. I welcome the witnesses and all of the visitors in the Public Gallery. I thank them for the great work they have been doing all of their lives and for highlighting so many issues here today. One of the biggest worries that I have for families and that the families themselves have is who will look after their child when they pass on. I know very elderly couples in Kerry who have been on to me and that is their worry. We have a great facility in Kerry, St. Mary of the Angels, but it is being closed down by stealth. I had a couple-----
Maurice Quinlivan (Limerick City, Sinn Fein)
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Deputy, your time is up.
Danny Healy-Rae (Kerry, Independent)
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Just one second. The husband died. They had a 33-year-old girl who was very hard to manage. Do you know where they were sending her, rather than leaving her into St. Mary of the Angels? They were sending her up to County Meath. That is how bad we are in Kerry.
Maurice Quinlivan (Limerick City, Sinn Fein)
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Thanks very much, Deputy.
Danny Healy-Rae (Kerry, Independent)
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We hear now that the Government is exploding with money. Now is the time to do something with it rather than giving it away to other countries. We should see after our own first.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the Deputy. Senator Kennelly, I apologise but you have only one minute.
Mike Kennelly (Fine Gael)
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I welcome all of the witnesses, especially Ms Keane and Ms Riordan. As a Kerry Senator, I have been an advocate for people with disabilities since I became a Senator. The argument that a complex is needed down in St. Mary of the Angels and for people leaving St. Francis school right now is compelling. We have an area that is central. It is ideally located in the centre of the county and supports people with disabilities who need respite in the whole of Kerry.
Ms Jean O'Sullivan Casey, the wife of Councillor Teddy O'Sullivan Casey, is leaving hospital today with her son Michael, who is a service user at St. Francis school. I wish them all of the best. The boy has been in hospital for three weeks and is going back down to Kerry by Bumbleance today. I wish them a safe journey. The Minister for education, Deputy Naughton, visited this location along with myself and Deputy Michael Cahill. I am very adamant on the programme for Government. It is for people with disabilities, to improve their lives. Money is one thing but delivering the services is another thing. The Tánaiste has agreed to meet with Councillor Teddy O'Sullivan Casey and all of the stakeholders on 5 June in the area of St. Mary of the Angels and St. Francis school. I will not stop until that is delivered under the programme for Government. I wish the witnesses a safe journey home. I know how far it is but I assure them that we are here to support them.
Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the Senator and, again, I apologise to all of the people who wanted to contribute but we have run out of time. I thank all of the witnesses. Everyone will agree that they gave powerful presentations. As Deputy Toole said, their presentations will inform our next session without a doubt. They will also inform the report that we will prepare. I assure them that they have not wasted their time coming here. Nobody in this committee will let this sit. We will do our best to move it on. Again, I thank everyone who presented and all of the Oireachtas Members who attended, including those who are not members of this committee. Unfortunately, we were not able to give everyone the time they would have liked but we facilitated everyone as best we could. It is proposed to publish all of the opening statements on the committee's web page. Is that agreed? Agreed.
Gillian Toole (Meath East, Independent)
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Could I also ask, in relation to the survey that was mentioned earlier, that the findings be provided to the committee?
Maurice Quinlivan (Limerick City, Sinn Fein)
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Yes, I was going to request that it be sent on to us.