I welcome everyone to our meeting this morning.

I have to read some formal notices first. I remind members of the constitutional requirement that they must be physically present within the confines of the place in which Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit a member to participate where they are not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting.

Having got the formalities out of the way, I welcome our witnesses this morning. This is an engagement in relation to petition No. P00017/26, to discuss the severe lack of services and facilities for people and families of those living with intellectual disabilities. I welcome Ms Sinéad McGrath, petitioner, and Mr. Tony Murray, founder of the Before We Die campaign.

Before we start, I have to explain some of the limitations to parliamentary privilege and the practice of the Houses with regards to references witnesses might make to another person in evidence. 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. Witnesses are reminded of the long-standing parliamentary practice 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 the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Before we hear from our witnesses, I propose that we publish their opening statements on the committee website. Is that agreed? Agreed.

On behalf of the committee, I welcome Ms Sinéad McGrath and Mr. Tony Murray. I invite them to read out their statements, and then we will have a chance for some questions and answers. I thank the witnesses for giving us their time.

I thank the committee members for inviting us. Parents of children with intellectual disabilities, or IDs, as we normally refer to them, have a simple question for the committee today. What will happen to my son or daughter when I am gone and no longer able to care for him or her? Who will look after my daughter, Aoife, or Sinéad's two sons, Lee and Alex?

These figures illustrate the scale of the problem. More than 2,000 adults with intellectual disability live with their parents over the age of 70. Just think about that for a moment. Sadly, 80 is becoming the new normal. Five hundred of these parents are over the age of 80. Indeed, we have come across parents in their 90s providing full-time care. That is the reality of our lives at the moment. A recent survey carried out by us showed that only 2% of people with an intellectual disability had a formal, written housing plan in place for their future. That survey had 1,000 housing participants. Some 48% of primary carers were over the age of 60, 14% are aged over 70, and 2% over 80. These are members of our campaign. Now the committee sees why we have sleepless nights.

We were recently invited to participate in the HSE's review of disability services. The HSE has commissioned Grant Thornton to carry out a review. At the workshop, Before We Die committee members were asked to sum up their experience in single-word expressions. The words which were common to many participants were "cruel," "heartless," "disjointed," and "bullying." The Minister's response to various parliamentary questions is to tell us how much the Department has spent. It will produce a word salad of figures and point to various reports and targets, but this is cold comfort to the mother of Jessica Hand, whose agreement I have to bring her case today, who was recently featured on the "RTÉ Investigates" programme. Jessica's situation is a result of a cruel and heartless system that has developed due to years of underfunding and lack of planning. As members listen to Jessica's story, keep in mind that the Government does not have a plan to have a plan.

The Cabinet committee on disability, announced by an Taoiseach, has not produced a single document to show that this situation is being acted on or taken seriously. In a reply to a parliamentary question from Deputy Cian O'Callaghan, the Taoiseach's office stated, "To date the Committee has considered issues including the new national human rights strategy for disabled people, the provision of therapists in special schools, improving the delivery of services, and reform of the Assessment of Need (AON) process." It is all very laudable, but there is nothing about housing. The impression given to us was that housing would be discussed at this committee. There is no mention of housing, which I think the committee would agree is the most basic of human rights.

Let us remind ourselves of the consequence of Government inaction. Jessica is a 45-year-old woman with Down's syndrome. She lives in Ballymun, at home, with her parents, Gladys, who is 70, and Michael, who is 77. Jessica has many life-altering health issues. She had a colostomy bag fitted many years ago. This needs daily management and care, which is provided by her mother. Jessica has a serious eye condition which has resulted in very poor vision. She has mobility issues and is a fall risk. Consequently, she does not go out much, and never on her own. Michael, her dad, is 77. He has been diagnosed with dementia. He is confined to a wheelchair and is now supported by a hospice nurse. He requires 24-hour, full-time care, as he can do nothing for himself. Due the cutback in funding, Jessica has not had respite in 28 years. Recently, her service provider told Gladys, her mother, that Jessica's transport to her day service was not guaranteed. Gladys is in a constant state of fear and worry, and asks what will happen when she is no longer able to care for her.

The social housing application process is disjointed and does not meet the needs of people with intellectual disabilities.

There is little or no co-ordination between the Department of housing, the Department of children and disability, the HSE and service providers. Parents are forced to fill out several forms, which require multiple signatures and supporting documentation, for housing that is unsuitable for their child with ID. There is absolutely no information or guidance for parents, or indeed staff. I met officials from the HSE last week and asked them whether they could produce a single, one-page sheet stating what needs to be done, as is done for passports. They cannot do that. When the application is made, there is no information loop involving the HSE, the service provider and the applicant. In other words, Dublin City Council does not contact the HSE, and it does not contact the service provider, so there is no system in place. The catch-22 that we talk about is that you cannot get a house without a service package and you cannot get a service package without a house. No single entity takes responsibility, which heaps more pressure on parents who are already struggling. We, and indeed the Minister, Deputy Foley, are proposing a one-stop shop application process. However, it requires an all-of-government commitment to implement this. We live in hope.

The disability action plan for the period 2024 to 2026 identified 900 additional places required to address unmet and demographic needs by 2026. However, since the report was published, only 389 places have been funded. That is a shortfall of around 500. That is 500 families living in a never-ending crisis. We contend there is more because there is no data collection covering who needs residential accommodation.

In this year's budget, 250 places were allocated. However, we contend that the funding is not ring-fenced. Of the 250 places, only 72 were for planned placements. That has to be divided by the number of CHOs, which means 12 places per CHO. The remaining 178 were for emergency cases. In other words, 178 parents have to become sick or die before a residential place is provided. Clearly, the HSE does not consider Jessica's case and similar ones to be emergencies.

Let me give an idea as to what a CHO is. I refer to 12 places for all of Cork and all of Kerry. That gives the scale of the unavailability of housing. When the inevitable crisis happens, usually when one or both parents die, only then does the HSE act. When the crisis happens in respect of Jessica, her care package will be put out to tender. Only then will the HSE act. Private, for-profit companies will bid for the business. A company will be selected and Jessica will be moved to wherever that company has a vacant house. Typically, these houses are in isolated and difficult to access locations in the middle of the country. Access for Gladys and Michael, who do not drive, is next to impossible.

Figures obtained from the HSE by Deputy Liam Quaide catalogue a cruel and heartless system. At least 193 people with intellectual disabilities are placed in residential care more than 100 km from their family home and community of origin. In total, approximately 606 individuals are placed in accommodation outside of their home county. Being placed hundreds of kilometres from familiar surroundings and family heavily impacts on the quality of life, community links, and family relationships of those affected. We argue that this isolation will lead to neglect, and neglect can lead to abuse. It appears the State has replaced the high walls of institutions with kilometres of distance. We have knocked down the walls and the gates are open, and now we put people from Dublin in the midlands, often in isolated areas where there is no public transport.

The disconnect between Government agencies has resulted in the State erecting many obstacles for the section 38 and 39 service providers to meet the needs of our children. Despite the commitment in the programme of Government to provide multi-annual funding, to date the Government has not honoured this commitment.

The service providers are operating year to year. They cannot plan for the future. Consequently, they are reluctant to provide respite or residential services without a guarantee of annual funding. It appears that capital advance leasing facility, CALF, and payment and availability, P and A, funding is not available to section 38 service providers, despite the fact the majority of them are approved housing bodies, AHBs. The capital assistance scheme, CAS, in which fund the Taoiseach told us there is lots of money, in inappropriate for the provision of housing for people with intellectual disability.

Another example of the State's disconnection from our lived reality is the application of the capacity Act. Together with the lack of residential places, parents have to live with the negative implications of the Act. The Act presumes everyone over the age of 18 has capacity - everyone. However, one short meeting with our children would clearly show they do not have the capacity to express their will and preference on complex matters such as housing and future planning. That is wide open to abuse by service providers and agencies. We contend the Act is not fit for purpose for adults with moderate or severe intellectual disability and demand the Act be reviewed and that we have representation on that review.

The last word was "bullying". This word was repeated several times during the Grant Thornton workshop. To give just one example, we need go no further than the letter that was sent to a mother of an adult woman with complex ID on 6 February this year by the HSE. The letter stated that there is a legal obligation on parents to support their children financially if the child is a dependent and that this applies to all children to the age of 18, or 23 if they are in education, but indefinitely if the child has a disability. The letter told the mother that, accordingly, she is legally obliged to support her daughter and that includes the provision of accommodation. One side of the State says the daughter has full capacity while the other side of the State - and we believe it is a letter to bully a parent - says we have a legal obligation to support our children indefinitely. No other group in the country has that obligation. There is a legal contradiction between the capacity Act and the HSE's assertion that parents have a responsibility to provide care and accommodation indefinitely if the child has a disability. This is a clear case of a disconnected, cruel, heartless and bullying culture towards parents and our children with intellectual disabilities.

To conclude, I return to my opening question. Who will look after my daughter, Aoife, or Ms McGrath's two sons, Alex and Lee, before we die? We cannot get an answer to that question.

I thank Mr. Murray. We hope the committee will be able to help the witnesses to get some of that answer because they made a compelling case. I do not think it was not lost on anyone here.

The first person to indicate was Deputy O'Connell. I will then call Deputy Buckley and Senator McCarthy.

I thank the witnesses for coming. I am familiar with the work they do. They have been incredible advocates for the families and individuals and it is very personal for them as well. They advocate for many families in my constituency of Dublin Rathdown. I have met several of them and their stories, like those of the witnesses, are compelling. I also find that each story and each individual is unique. They have unique requirements and needs and our processes at the moment do not reflect that.

I had a particularly memorable first meeting with a family during the last general election campaign. It was a cold, wet November night. It was my first time running. I knocked on a door and a wonderful woman opened it and insisted I come in to meet her son, Colm. He was a remarkable young man with an intellectual disability, but he was also unremarkable, in that what he really wanted was to no longer be living with his mother, but to live with his friends who he met in the community centre and for them to find their own path in life.

As the witnesses can tell, I have been in touch with that woman a couple of times. It is a significant and impactful story. When I looked into it afterwards, I uncovered all of the issues that Mr. Murray has raised. When I was elected, it was one of the first issues that I raised with Deputy Naughton, who was the relevant Minister of State at the time. I have raised it subsequently with the Minister of State, Deputy Higgins, and also with the Minister of State, Deputy O'Donnell, in terms of that capacity issue. I am doing what I can to advocate on behalf of them. I know that there was a Cabinet subcommittee meeting and that the Tánaiste spoke very positively afterwards.

In terms of needing to change that direction of travel to move to a more planned system, the issues and numbers are clear. I look forward to the next steps around that and to there also being more of a focus on the non-profits and local authorities to provide the housing, which is necessary. This was highlighted by Mr. Murray.

The Tánaiste highlighted the need for funding and targets. We know who the families are, so we have to work out how we are going to go about developing that planned process to provide for them down the road.

I applaud the witnesses for all the work they are doing. I know it is tireless. They have children who they have to support while also coming into us and advocating on their behalf and on behalf of all the other families. I thank them for doing that, and I will certainly do what I can do support their work.

With respect, what the Deputy is missing is that I have no choice. I do not want to be praised for advocating for my daughter - I really do not - and I am sure that Ms McGrath is the same. We have no choice because we are so frightened and so broken by the system. What else are we to do?

People say to us that they have heard our case, and I understand that from the Deputy's point of view, but this requires the Government to say that the system is broken. Fixing a bit here and there is not going to work.

What is interesting about the bullying is that when the official from the HSE area in Cork was at an Oireachtas committee in this very room, they would not say what law the letter referred to and would not withdraw the letter. The HSE effectively wrote a letter and quoted a law, but we still cannot find out what law it was referring to. It has also never said that it was wrong. If legislators like the committee members cannot get an answer from the HSE, which is an organ of the State, about what law it was referring to, that has a devastating effect. We brought it up with Minister after Minister, but the letter still stands. This gives members a microcosm of the disconnect.

Ms McGrath is in exactly the same situation. We do not have a choice. The system is so broken that we have to stand up and do this. What is really hurtful is that Ms McGrath and I have to expose our private lives on television and radio. I did not have to do that for my two other sons.

I did not have to do it for my older son either. I am at the other end of the scale from Mr. Murray’s age group. Not to be ageist, but the people we are trying to reach and are representing – I am happy to be their voice today and I hope I have a couple of years in me – include adults and elderly parents. I have met the 70- and 80-year-olds. I have spoken to them on the phone. For whatever reason – the bullying is probably part of it – they are absolutely terrified to open their mouths and tell their stories. They will confide in us. We hear the stories every day and one is worse than the next. We know of the 93-year-old father in Cork. I know of another lady in Cork who is nearly 80 years of age and needs a serious operation. She has no one to take care of her son for the six-to-eight-week recovery period. She cannot take that operation. Gladys’s story is heartbreaking, but there are hundreds of people like Gladys all over the country. We are a nationwide campaign. We are hearing these stories. People are reaching out to us, so I am happy to be a voice for those elderly parents and to advocate for them as well as our adult children.

Good morning and I thank everyone for coming in. I listened to the witnesses' frustration. It is like cancer, in that everybody knows somebody who has had cancer. It is the same with people with disabilities. We have the Before We Die group and the Bridging the Gap campaign. I listened to what Mr. Murray said about how there was no joined-up thinking between any of the Departments and the HSE. We are talking about the gap in services - sorry, there is no gap; I meant the non-existent services - for people who are heading into their elder life. The carers are extremely old and there is no care plan. If we go back to the start with kids in primary school, the Department of education is not even planning where these children with intellectual disabilities will go to secondary school. This is happening right now, which is what really frustrates me. It is another family of lived experiences, and the witnesses are the experts. No psychologist or "ologist" of any kind will tell them how to deal with this, as they live this every day.

Yes.

I hear the witnesses' pain. I have met some of them and have met a lot of people below. I remember raising a case out of frustration a number of years ago in the Dáil Chamber with one of the Ministers at the time. We as elected representatives should not have to take individual cases into the public domain in Leinster House live on television, regardless of whether it is at 9 p.m. or 10 p.m., and tell their life stories in order to get a response. This woman was in her late 50s and caring for a child in her late 30s. She never got as much as a carer's allowance. She had broken her hip. Her child had to be walked for 5 km in the morning and 5 km in the evening so the child would sleep. The woman had broken her hip and had to cycle a bike with one leg to exercise that child. She got no help. I know that woman personally. She asked me to read out her story today just so that the Departments here would actually sit down and come up with a plan. This situations is not going to go away when the next 500, 600, 700, 800, or 900 people die. This is a revolving door situation that will happen over and over again. It is the carers who are getting battered in this. The woman had no problem with me saying this. She explains her story here. I got permission to read it out, Chair, so bear with me. She says:

My name is Margaret Condon and I am the mother of Yvonne Condon. She is 40 in July, with Fraser syndrome; the only one with this syndrome in Ireland. She is registered blind, deaf, non-verbal and autistic. She has the mental age of a five-to-year old. She attends John Bermingham Centre in Glasheen, Cork and does avail of respite.

Caring for Yvonne has taken its toll on my physical and mental health. From the day Yvonne was born I have had to fight for the most basic services for her. I am now sixty six and worry every day about her future. My health as a result of looking after Yvonne has declined. I have bulging discs in my back and have had various surgeries on my shoulders. Yvonne is a big strong ten-stone plus girl whereas I am a slight six stone eleven. I have a simple question: "What will happen to Yvonne when I am no longer able to provide the care she needs?"

Due to the lack of planning by the HSE and years of underfunding by successive Governments no one can offer a residential housing plan for Yvonne. This is the bleak reality I and every parent providing full-time care for adults with intellectual disabilities live with every day.

My question is what are you doing to address this issue and how is the government planning to address the crisis?

As a matter of urgency, I would appreciate a meeting with you to discuss the above and ask you to lobby the Government to meet their commitments as published in the disability action plan (2024-2026).

Mr. Murray read out how we were short 500 places under the 2024-26 plan. We are in 2026, so that is two thirds of another plan gone up in smoke. I am being very polite and conscious of my words.

Finally, if the Chair will bear with me, I will discuss the Assisted Decision-Making (Capacity) (Amendment) Bill 2017. Mr. Murray is shaking his head. I will put my hand up, as that was one of my Bills to safeguard people with dementia, Alzheimer's or the early onset of them. The guardians of those people would be guaranteed the best quality of care, as every human being should get.

I am hearing what the witnesses are saying, which is that the Act is not working, and I will revisit the issue with them. The Bill was designed so that the State, and not the family, would be obliged. The State is obliged to give the person who needs the care the best quality of care. That is what the Bill was designed for. We are well able to take criticism as well as praise, and we get more criticism than praise.

The witnesses have requests. The funding is obviously going to be a problem. They mentioned private over public care. Private care is not about patient safety. It is about profit. That is a big problem. There is a need for a transition plan. Once you turn 18, you go out of the system. That is not working. There is more than one Minister involved here. We must be conscious that the Ministers do not have a magic wand, but we could at least get joined-up thinking. All of us, from all parties and none, are set on the Sláintecare report. It can be done without politics. This is not a political group here. It is about getting stuff done. I would be very interested in that.

The autism committee came out with a report with 109 recommendations. That committee shut down, but I recommend that the witnesses tie in with its report. We will do whatever we can here because this subject is never going to go away. I would love to be able to say that we will come up with a plan. It is grand coming up with a plan, but it has to be implemented.

I have one more question for the witnesses, after which I will stop. Could the witnesses pick a pilot project to get their eight demands in place and get the project to work? I know it could take a while, but if it works, and it should, we would be able to replicate it in all the CHO areas. Would that be a way to try to bridge the gap, get their feet in the door and ask for funding for one project? I know that others will lose out. It is an Irish thing. We in Ireland are not visionaries. We have to see something happening, instead of envisaging the plan, for it to work. What do the witnesses think of that?

There was a similar plan in the Galway region. It was a pilot that got funding. It has run into problems. There are so many different things wrong. I met the ex-CEO of an organisation called Gheel Autism Services. I met him in Croke Park and he was talking about the campaign. That organisation built a unit of parents like us. It is a community setting. It is like a cluster. When he built the unit 30-odd years ago, he said that the Department of Health insisted that there would be twin bedrooms and people with autism would share a bedroom. He said that was not going to work.

We lurch from one policy to another but nobody asks parents. People in the Department, or whoever, come up with another policy. At the moment, it is Government policy to decongregate to ensure there are no more than ten people in any kind of cluster. We now find, however, that with a dispersed model of housing, it is hard to find housing. It is also now hard to find staff because we need staff for dispersed housing. If you had a cluster, you would have a mutual support community of staff and would be more likely to retain staff because of the social aspect of work. We all go to work for social, as well as financial, reasons. If you are isolated in a house on your own, it is pretty grim. It is not a great career move.

The same unit, which was built approximately 40 years ago, is a cluster model. It works. It has a wonderful garden. It has its own transport. It works. It is in Fairview. However, the HSE now says "No" because of Government policy. There are more than ten in that unit. It is absolutely bonkers. Somebody came up with the policy to limit it to ten people. If you had a model that provided for three houses beside one another and put four people in each house, there would be 12 people in a congregated setting and we would be back to square one. I have said before that the policies land somewhere between Monty Python and Kafka.

They are not speaking to parents. The capacity Act is a classic case. The Deputy read out a letter about the girl who was blind and had no speech.

In law, she has full capacity. She does not, but she does in law. Ms McGrath has just gone through what it takes to get a decision-making agreement made.

I have a 50:50 capacity placement in place for my two sons. They still need a lot of supports, but they would manage public transport and they are verbal. It took me the best part a year to get all of the documentation together and uploaded, assisting my sons to do this, and we did it through the 50:50 capacity Act.

We wiped the brow down after working on it from July to April. A week later, though, we got a phone call saying that we had the authorisation but because we had to do it on an annual basis, I now needed to start reporting on everything I helped my sons make a decision on. I was only just over the barrier of getting it done, which it took me forever. That was for me, who had access to computers and a printer, who was able to scan and upload documents. It did not always work in the first instance. It was a very frustrating process. There were times I had to put it aside for weeks to actually be in the right frame of mind for us to face it again together. It took hours of phone calls from the Decision Support Service, DSS, with my sons on the phone answering questions. For example, they said that they would like support if they wished to live independently. Obviously, if they were going to live independently, something they would need help with would be setting up bills. So, we said they needed help with utilities. Actually, you cannot just say "utilities", so we had to say electricity, gas and the Internet. You have to go into that detail and everything that goes with it. You have to mention each one in terms of where they would live and stuff. It was bonkers.

We were on a phone call on speaker and there were about three follow-up phone calls of about an hour long each. It was just so frustrating. I cannot believe we now have to start reporting on it. I cannot face that. I will do it the night before it is due or something. It is crazy.

To add to what we were talking about with Mr. Murray, I am glad that Deputy Buckley brought attention to our eight demands. We have all that in place and we are making those eight demands very clear everywhere we go. Getting back to the very basics, the social housing application process is so difficult. We are finding that with parents, trying to explain to the older parents and every other age group that this is actually just a box-ticking exercise and an administration process. You need to get the reference number to be able to access supports in the event of emergency. The document is 24 pages long. It is not even fit for purpose. We do understand that it is it is a national form, but we are making a little bit of headway in Cork. We have another meeting tomorrow with Cork city and county councils and we have liaison people in place with both, which makes life a bit easier because we can direct them. We are not looking for any special attention or anything. We will go into the queue like everybody else. We are a nationwide campaign and we are getting feedback through all local authorities. An example of a reason for an application being refused is no proof of address. A lot of our young adults with intellectual disabilities will never travel because they cannot, yet the application will only take a passport or driver's licence. In some instances, we do not have those. That is one barrier. You need a utility bill in your name for a proof of address. We do not have that. You need to set up a MyGov.ie account and need an email address to do that, but we cannot do that because it is illegal to set up an email address for somebody else. Some local authorities are redirecting families and the person with the disability to the citizens advice bureau. It is nuts. This is happening around the country. We know that each local authority operates differently, yet all of the reasons for the rejections have been the same. I had to do it all twice with my sons because there are two of them. Even that process alone is so difficult. Even the bank statements are being rejected. You need a statement from their Revolut or bank account, if they have one. Some of our adults with intellectual disabilities would not have one, but even if they do, the statements are two weeks out of date because a person might take two weeks to get to the local post office in rural west Cork.

Bridging the Gap was mentioned. I am obviously familiar with that, being from east Cork. I remember fighting for special needs assistants, SNAs, in my sons' school when they were four and six years old, then fighting for transport, then for placement, and then for secondary school placement. It is endless. Thankfully, I have a bit of fight in me but I am speaking on behalf of the older generation and those parents who are absolutely on their knees and exhausted.

I am actually tired now. I have huge respect for those who are still doing this in their 70s. I genuinely do not know how in their 70s and 80s they can still provide care. They have done their best with respect and love for the people they have been supporting their whole lives. The reality is, because the parents are getting older, the son or daughter is now isolated at home because the parents can no longer drive. There is guilt for older parents because the person is way more isolated at home with the parents or in some cases one parent. They cannot get the day service because they are in a rural area or for whatever other reason, so they are way more isolated. In some instances, the adult with the intellectual disability is not only not making any progress, but regressing. They have no social outlet, even in the day service. The stories are harrowing to hear.

This really comes back to what we said about an all-of-government approach, where everybody sits in a room together like this and designs a system. What has happened instead is that people have designed a system that exploits the love that parents have for their children because, sure, they will do it until they are dead. We do not have the design, so it then becomes an emergency. How cruel is that? People who have a dog and love their dog probably check the kennel when leaving the dog before they go on holidays. I cannot do that for Aoife. I cannot even see where she might go if I drop dead today. I have no idea. A dog would be treated better. My wife is so broken by this, by the capacity Act and by what we are hearing about its weaponisation that she actually said to me at the weekend that if Aoife were offered a residential place, she would be afraid to take it because of the stories we had heard of abuse and neglect and because of the capacity Act. With somebody like Aoife, who is 42 but is like a three-year-old, somebody can just say that, because of her syndrome, she eats and does not know when she is full, and that is her will and preference. Then she gets obese and her teeth fall out. That is not her will and preference, but nobody is saying we need to deal with the fact that these people have disabilities and are vulnerable. The system is in some way pretending that they have all the choices and so on. They do not. They are vulnerable adults who need to be protected.

I will just say one more thing.

I need to bring in Senator McCarthy. We have plenty of time, but I think that the Senator might be under a bit of pressure for time, so-----

The European Parliament President is upstairs and I have to be up there in literally five minutes, but the witnesses are more important-----

I was just going to say that. I thank the Senator. I am glad he did.

-----and that is why I stay.

I was in Scotland yesterday. I returned last night. I was over visiting my sister. My sister's husband's sister has ID. She is non-verbal. Her mum was worried for 30 years about where her daughter would go. She always thought her daughter would pass away before her. Her mum has been dead 20 years now. Vanda is 74 and she is in a good, secure residential place.

The witnesses' submission is powerful. I had no idea that there were 2,314 people in the same position. One is too many. It seems to be a very current crisis. It is happening now. Of those people, 2% have written plans. What would happen to Aoife today if Mr. Murray were to pass away? Is there a system in place? Would everyone be forced into crisis mode? What happens?

What will happen is that it will be left to Susan, my wife, to care. When she goes, breaks down or whatever, Aoife's care package will go to tender and be tendered to private, for-profit companies. The section 38 organisations, because of a funding model that lacks multi-annual funding and guaranteed funding, will say that they cannot bid for that because they have no idea if they will have the staff.

The private, for-profit companies then bid and they are buying land. One is in Allenwood. To a Dub, that is like the Bog of Allen.

I live close to Allenwood.

The Senator knows it.

I live in Naas but I know it.

A company bought a house there. Seven people live in it, and there are seven cars - it has been applauded by HIQA - which are not bangers. They will have to be new cars. They are 18 km from Naas; I measured as much as I could. If there is an elderly parent who does not drive or is nervous about driving, how do they get to see their son or daughter?

That is the Gladys and Michael situation.

That is what will happen. It is not might happen; it will happen.

It is happening.

It is happening all the time.

I am involved in the addiction sector. I would have seen it in my own family and I realised the only way to do something about it is to do something yourself so we set up an organisation called Tiglin. However, a lot of private firms doing respite for people coming from the care system, etc., it is a cowboy system. We have to be careful when it is for profit because the person is put aside and the profit comes to the fore.

What they are doing - this is anecdotal what we are being told by service providers - is that they are poaching managers from the section 38 and section 39 organisations and paying them a lot of money while the care workers are paid much less than the HSE rate. There is huge turnover of staff. Most people who work in the big organisations like ourselves and St. John of God, etc., are lifers. There is a huge problem that the staff are quite transient. St. Michael's House in Dublin or Horizons in Cork always want to buy a house near their service so Aoife could go to her day service, but where are they going to buy a house close to Ballymun and she is in Santry? The houses are not there. They are effectively out of the game because of the funding model with CAS and they have been excluded from the other model, so it has left it wide open for private for-profit, which probably are not all bad but it is a very dangerous road. While everybody is saying we cannot go down this road, they continue to go down the road. If we say we cannot go down the road, stop. The way to stop it is multi-annual funding and allow the service providers to get the funding. If you want to stop it, you quantify the problem. At the moment there are no figures. Figures are pulled out of the sky.

That was my next question. Has Mr. Murray costed what a system in place would look like?

No, from the point of view, as Ms McGrath alluded to it, that we are parents. I have to be home for 3 p.m. because Aoife's bus is home so I cannot hang around town. I do not have the expertise. The interesting thing is this image on screen. We asked the HSE for the figure of how many people over the age of 70 were caring and we could not get an answer. We got an answer, and we did so because one of our members, Sarah, wrote to the CSO, asked if it could provide those figures and it said "Yes". It could not go over 80 because that might identify people and over 90 definitely would have identified people. There was a GDPR issue.

Did Mr. Murray say there are 500 over 80?

There are 500. We could get this figure as parents.

It sounds like "computer says no" in a lot of cases.

They do not want to know, I would argue.

I am terribly sorry; I have to go.

I thank the witnesses for coming in. No parent should have to lay bare the health or condition of a family member, child, brother or sister in public to advocate for services for them. It should not have happened in years gone by and definitely should not happen in a modern society.

The slide the witnesses have up indicates there are 2,314 adults. There are 86 in my constituency. It is not a massive never-ending number. When this was brought to us, I said that maybe we can put together a document. I do not know if we have done it, but that is what we need to do. Let us start and start working here. What we want to do is not insurmountable. It is just getting heads in a room and getting people to talk together. Deputy O’Connell and I will meet the Minister and our party people to impress upon them what the witnesses have said today. The committee will put together a document that we can bring up the line.

It is not going to happen overnight, but let us work at it and get to a point where we can get to the witnesses' eight demands. I do not see a demand there that is not achievable or is over the top. Sometimes, you look at the number of demands and say, "Yeah, yeah, yeah", then you see one and say, "No", but I cannot see one there that is not achievable in this day and age. I will fully support the witnesses in their eight demands to move forward. I will work with the committee. My colleague, Deputy O'Connell, and I will go to our line Minister and the Tánaiste to bring that case forward and then work with the committee in the whole of government. As the Government, but it is also the Opposition, we will hopefully all work together, come together with a set of proposals and get rid of the log-jams and roadblocks that are there for any person.

I have children. Thank God and touch wood, there is nothing wrong. For any parent with a child who needs help and the years go on, they are worrying. Mr. Murray said he has to be home at 3 p.m. today. I could not say to him to stay for lunch and let us go for walk. His life is that he has to be home at 3 p.m. and that is the same for a number of people. He is not the only one. It should not be that way. I will fully support the eight demands. We will work as a committee. I will work with Deputy O’Connell and we will bring it forward and do anything else that we can to help to try to get this onto a statutory footing and delivered.

We are meeting the Tánaiste, Deputy Harris, and the Minister of State, Deputy Higgins, next Tuesday. Will Deputy Maxwell meet them before?

We will meet them before and reinforce it.

What we are looking for are clearly our demands, but what we are really looking for is a meeting in September to ask what was done since we met in June.

Is Mr. Murray looking for a meeting with the committee in September?

No, with the Minister.

Sometimes, it is quite easy to get a meeting with a Minister because that is just a general "I am hearing and listening to you meeting", but it is the "Did you do your obair bhaile?" meeting a couple of months later that can be the tough one to secure. As a committee, we will support the witnesses in having that follow-up meeting. That is very important. As Deputy Maxwell outlined, it is our intention to pursue this matter, both with the HSE and in terms of any reports that we can provide as a committee. It has been pointed out that this a cross-party committee. We are interested in doing the thing that works. We are interested in hearing from people and then figuring out whether we can do something that is going to be useful. We will certainly do whatever we can to secure the follow-up meeting. As a former campaigner and advocate, I understand that the first meeting can be the easy one to get, the follow-up meeting-----

The tick box.

That is no disrespect to anyone at the meeting, who I know will attend in good faith and listen, but it is the follow-up meeting and the "Did you do your obair bhaile?" meeting that is always the hard one to get. We will definitely support that.

The key when the members are talking to their colleagues is, "Where is the plan? Where is the plan to even have a plan?" To have a plan, things are complicated. It is not as simple as we will just put more money in, or do this or do that. A plan to have a plan means, "Who do we need to talk to?" The planners need to talk to parents. They have to talk to parents. It is almost wargaming and if we do that, how will that work? If that had been done with the capacity Act, we could have told members that does not fit very well if somebody has a non-verbal severe disability. Ms McGrath mentioned the reporting. We were quoted €9,000 to €11,000 to get a decision-making agreement for our daughter.

As my wife would say, she pays that amount of money to get, in law, what she has to do and has been doing for the last 42 years. Will it make any difference? The answer is "No", but that is the kind of world we live in. I ask the members to ask their colleagues: where is the plan to have a plan and how are we going to solve it? Everybody is on the same side. We know the committee is on our side but nothing is happening.

I will ask that question.

The disingenuous thing is the Government saying 250 new places were provided. That is great but then we discover that 72 are planned and the other ones are for emergency. Of course places have to be provided because the parents have died. It is no great thing for the Government to clap itself on the back about. In one year, only seven new places were provided - I think in 2001. When the Minister talks about percentages, he is coming from a figure of 2% or 3%. Of course it is a big increase because previously there was no funding. The Government should not talk about percentages but about planned places because that is where it has to talk to service providers. The emergency will be taken up by the for-profit.

The key to a lot of what Mr. Murray is saying is around that planning. One way or another, the State will spend money. No one wants to think about this but the campaign group is called Before We Die. If nothing is done before a person dies, the State will spend money one way or another. The question is whether it is spent in the private sector in a haphazard way that does not suit the families or children, or it is spent in a more planned way where people can live with a bit of dignity.

It will spend double the money.

Triple it, in some cases.

Yes. Again, that is when dealing with a crisis. I am conscious I have another speaker. Deputy Hayes, le do thoil.

I thank both witnesses for coming in and giving their testimony, and those in the Gallery as well who have joined us and are part of the campaign. It is a real honour to have them here. I am so deeply sorry this is happening to them, to their families and to their children. What is happening is abhorrent. It is genuinely shameful how they and their children have been treated. We have a problem in this country of recognising where there is real need and addressing it urgently. I welcome the cross-party consensus we are getting here and I hope that the witnesses' ministerial engagement is good.

Some of the things that have been said really resonated with me. The witnesses should not have to expose their private lives like this; nobody should. There is an exploitation of well-meaning parents who are putting everything on the line to provide care for their children where the State is not playing its adequate role. It really should not have come to this. It should not have come to a committee in the Oireachtas. It should not have come to a ministerial meeting. It should not have come to parliamentary party meetings. My priority is that I am fully behind the witnesses.

To add to the testimony the witnesses have given, this does come up in my constituency quite a lot. Going door to door, I meet families with adult children with intellectual disabilities. I was talking to somebody yesterday who is in charge of the community arts centre in Rathgar, which does a great artistic programme for people with intellectual disabilities. She told me a story about how a 72-year-old man was dropping off his child to the arts centre once a week. These families are doing so much to give their kids and their adult children fantastic opportunities but it should not be completely the responsibility of the parent to take care of these things. People in their 70s are doing what are effectively after-school runs. That is a really difficult thing.

In that context, the witnesses talked about the 2,374 adults whose parents are over 70, but there is this other cohort that Ms McGrath talked about that is younger. When we talk about planning or planning for plans, it cannot just be the people who are towards the later stages of their lives. It would also have to be for people in middle age. It would be helpful to hear a bit more of Ms McGrath's story. I will ask her a few questions and then we will go through them. To answer her question on who should take care of her children, it should be the State.

I think we would all agree with that. One of the really disturbing things in the witnesses' testimony is the question of indefinite responsibility. I cannot wrap my head around it, frankly. The profit motive absolutely corrupts everything here.

I would also love to hear from the witnesses, on these eight demands, what has been the response so far from the various Departments when these demands were sent in? I am conscious that some of them are financial, some of them are local authorities and some of them are legislative. I would love to hear what has been the general response received across them up until now, specifically on one demand, of reforming the capacity Act. Given that we are legislators in this room and we have an opportunity to action legislate, notwithstanding the ministerial role in that, I would love to hear what specific reforms the witnesses would like to see from the capacity Act.

To take the HSE as an example, we have met the HSE on numerous occasions. As I said, last week I met an area manager with the CEO of St. Michael's House. I asked for a single sheet explaining how to apply for social housing and she could not do it. We know there is a single sheet to explain how to apply for a passport. That is all we are asking for. What is happening is, you fill out the form and then find you need, for example, proof of Aoife's address. We do not have proof of Aoife's address. We do not keep letters. She has not got a bank statement. How do we do that? We then had to write to somebody else and they have to write to the HSE. If only we had known all this. The shocking thing, which is not answering the question, is that a member of ours went through all of this on behalf of her daughter. She got the news from Dublin City Council to say she was number 1,600 on the list for a one-bedroom apartment in Coolock. The daughter is showing signs of dementia and has mobility problems. What a waste of money for somebody in Dublin City Council to go through the charade of giving her a house that is totally unsuitable, will never work and she will never get the house. It is madness and ignores the reality.

The HSE is so disjointed. An example is that letter that was sent and the HSE, the CEO or the person in the area in Cork who was at the meeting would not explain and pulled the number that they cannot talk about individual cases. We are not talking about an individual case. We are talking about what law is involved That is the culture of the HSE. In a sense, there is no Minister or group of Ministers or all of Government to say we need to solve it and to lock the door, take away the key and say to housing, local authorities, service providers and finance to solve it. That is not happening.

We have a meeting with the HSE. We are trying to get a meeting with housing. It is too complicated for parents. It is never-ending. This has effectively become for me, because I am retired, a full-time job. There are endless cases of "we need to do this" or "there is that meeting", and there is nobody in Government doing that, which is really shocking. There is no Minister saying this needs to be solved. It was really hurtful to find in the parliamentary question that the subcommittee has not discussed housing. The impression was certainly given that that was the reason the subcommittee was meeting. We then discovered it has not discussed it. Maybe it talked about housing last week. That is really hurtful. We feel we were fools and played for fools because we assumed that it would be discussed. It is really hurtful to find this when we are six months on the road. The other thing is, we are only six months on the road and look at the traction we have had. It shows the demand. It is not like we are some niche group. There is such a group out there, it is overwhelming. Everybody supports us but the Government effectively is not devising to have a plan. That is just the reality of it.

The crisis has always been there. We are just after bringing it to the fore, it is getting attention now and people are actually speaking out for the first time. To answer the question about the younger parents, there is a huge percentage of our survey who were over 60. The positive thing, besides the Government side, to families, is actually opening the conversation in the family home. I acknowledge the siblings who are in that caring role. We have a lot of siblings, including a sibling on our committee. It is always just the presumption of the HSE and everybody else that the sibling will take over the care. I have yet to meet a parent who wants that for their other children. Nobody in the world wants that for their older son or daughter, or younger son or daughter in some cases. We have one or two families who are going into a third generation of caring. It would be my nieces and nephews and I would absolutely not want that.

In terms of the younger families, besides opening up the conversation, we are starting with the social housing process. People with intellectual disabilities and their families are already at a disadvantage when it comes to getting on the social housing list. We are years behind. When the congregated settings policy changed in 2016 or 2017, nobody communicated to people with intellectual disabilities or their families that this was the route they needed to go, that they needed to get on the social housing. It is already flooded and full to capacity, no matter what the local authority, and we have looked at a few different local authorities around the country. We are at a disadvantage straight away to get on that list. Mr. Murray mentioned being number 1,600 on the list for a one-bedroom apartment that is not even fit for purpose. It is a box-ticking exercise, that whole thing. We really feel it is very unfair. I do not know whose responsibility it was to communicate with families, whether it was the HSE or the service provider. Of those in our survey, only 2% have a plan in place. Even the younger parents did not know that the social housing application form is a route that we have to go down. That knowledge is still not out there. We are sharing it; we are getting word out. It is being done by parents sharing with each other. That father who is 72 in the Deputy's constituency is not going to be able to do that forever. When he comes to an age when he can no longer drop his son or daughter to their art, which they love and which could be their only social outlet, what happens to that person with an intellectual disability? They are isolated at home. The father is riddled with guilt because he cannot bring them. He can see the isolation and the backwards steps after all the years he has put into loving and supporting his adult son or daughter to get those social interactions. Nobody has yet actually communicated through service providers, although some are getting better, to the families and the persons with intellectual disability that this is the route they need to go. It is not even clear about the route yet. We are putting it out there. We are trying our best to put it out there.

We are trying our best to be clear. We have a new document which we can share, showing the steps. The other answer to the question, and the Deputy will appreciate where this is coming from, is that I met a social worker who said to us that it was a pity we did not have another daughter. I have two sons. That is how bad it is. Gladys was told by a social worker to put her husband in a nursing home, because that would free her up to look after Jessica. Gladys said that Jessica would need so much counselling or support around that, because her dad used to do all the lifting and collect her, and suddenly her dad is gone - we are all only going one way, let us face it - and just nothing. That was the answer: why do you not put him a nursing home? She is not putting him in a nursing home because of Jessica, because he is Jessica's world, in a sense. The answer to me was that it was a pity we did not have another daughter. I do not necessarily blame the social worker because you could say, yes, that is actually the answer. It is so hard to explain.

One of the analogies I use is that somebody said to me or Susan, my wife, that it must be like a dark cloud. I said it was not like a dark cloud; we have a beautiful day-to-day. The clouds eventually go and you forget the wet winter. It is like a black hole where no light is actually emitted.

It is very hard to explain to people the nothingness of no hope and no plan. We plan for work and retirement and for a holiday.

I have said to many people that our children have a very limited horizon. They cannot think of finishing college and going to Australia or whatever. Aoife's world is Fairview, Omni in Santry and my sister in Bray. That is it. To take her out of that world and plonk her anywhere would be wrong. There are people from Cork who are in Meath and people from Meath who are placed in Cork because that is where the company has land. It is cruel.

On the other hand, Ministers and the Government will talk about human rights and all of that kind of soft talk. The reality is that when mammy and daddy are gone, families and siblings will be told it is a case of take it or leave it. If people do not want their daughter in the Bog of Allen, they have to take her. If a place is refused three times, the person is off the list. People have very good reasons for saying something is an inappropriate setting, but they are off the list. It is incredible how cruel, heartless, bullying and disjointed the system is. They are the words that came to mind from people using single word expressions of their experience. When the report is published, it will be really interesting to see how much it cost and what happens to it. We will see if it will wallpaper the bedrooms of many parents and be a report that gives hope but nothing happens.

For our part, as a committee we have an interest in doing what will work and making a contribution. I will open for another round of questions if members want. I have some questions.

I am very proud to represent a constituency in north County Dublin. I work with a woman called Nora Roban who runs Remember Us. The witnesses will know her well. She works with a small committee of dedicated people. They are very diligent about the work they do, but they should not have to do it. We are very grateful for Nora, her committee and all of the work Remember Us does. The group has formulated a proposal which it calls homes for us. If we want to be rigid about it, it will fall inside the definition of a congregated setting, but we all know that a congregated setting is not about what we are describing. Such settings put people in high-walled institutions, and nobody wants to go back to that. I have not met one person in the history of the world who wants to go backwards and reintroduce high-walled institutions.

Decongregation means having people out in the community. People out in the community in a small cluster with more than ten people is not a congregated setting. Remember Us keeps running into a brick wall. They are very organised and willing to present themselves as a pilot. Nora is a tireless fundraiser. There are people who are almost shovel ready to do this work. The pilot exists. There is no need for any reviews. A huge amount of work has been done by the witnesses and Remember Us.

We will discuss this as a committee. We are trying to understand what we can do to make the position visible and clear to the State. I understand the witnesses are here to talk about their loved ones. However, if we look clinically at this, we are paying for this service anyway. The question is whether we are paying for dignity and certainty or to put out fires and deal with emergencies. When the State is paying money, given by the taxpayer, it should listen to the people who are at the business end. They should spend that money in a way that gives dignity and certainty to people.

My upset is nothing; I am not asking anyone to get the violins out. It is upsetting to hear from the witnesses about the system being cruel and bullying and how people are made to feel for simply advocating for their children, which is what any parent does. Every parent wants the same thing. I have said this all my life.

All they want is for their kids to have a good life and thrive and live their best life.

And to be safe.

That is it. All parents are the same. Children are not the same. Some kids need support in one way and some in another, but that is all we want for our children.

On the legal obligation to support a child indefinitely, we will try to get an answer from the HSE. We and others are trying to get that answer. If you tell someone they have a legal obligation to do something, you do not need to be a genius to figure out the next question will be, "Under what law, precisely?" We are legislators so we understand how to make the law. The HSE should understand how to enforce it, but nobody should be trying to enforce a law that does not exist or to place an obligation on parents where it does not exist. We will try as a committee to get an answer on that. I am well aware of that letter, but hearing it again has the capacity to shock me one more time. I think we are all the same here. I will discuss this with committee members after the hearing. We will follow up with the HSE. We will do all we can to ensure the witnesses get the second meeting. We know the first meeting is easy and the second meeting is the hard one. We will do that collectively and individually. We will also keep the issue on the public agenda to the greatest extent possible.

I have a question on accessing the social housing waiting list. In my constituency, that waiting list is very long. I think it is long everywhere. There are an awful lot of people caught up in the housing crisis, disaster, whatever you want to call it. We work with many individuals with intellectual disabilities. We support their families in filling out forms and getting onto the housing lists. They are adding to the number in that they are not coming off the list. That woman is not getting the one-bed in Coolock. That is not her forever home. That is not the plan life has for her. The solution is not a separate housing list either. How would the witnesses envisage the collaboration between the HSE, local authorities and parents happening? Is it at local authority level? Someone has to drive this. The witnesses should not have to but they are doing the heavy lifting for the moment. Somebody has to take ownership of this. Is it within the HSE, where the focus is on the supports that are needed? Is it within the Department of housing, where the focus is on the bricks and mortar? For as long as everybody is in charge and everybody is responsible, nobody is in charge and nobody is responsible. There needs to be a primary driver for this.

The Department of housing stopped the CALF funding. It took that decision. You could say it was a Government decision as well. That immediately excludes the section 38 and section 39 organisations. They are gone out of the picture. That is a serious issue. They are approved housing bodies, so that would be one way.

The other thing is not in the committee's remit. Cheeverstown was a cluster. It is out near Tallaght. Clearly, I am a culchie who lives on the northside when I cannot name the area but it is out that way. It was built in the 1970s and 1980s as the model. It had a community, a pool and all of that. It has been shut down and sold off for an old folks village. The unit is there, it is built for purpose and it is being sold off. The HSE has bungalows in some of its older institutions - Portrane and all that - which would not be great but if it was run properly, it would be ideal.

The other thing we have been asking Dublin City Council about is the many parcels of land around the city owned by the HSE and Dublin City Council that would not be suitable for big housing estates but would be ideal for a cluster. It needs an all-government approach to asking Dublin City Council what kind of land it has around Fingal - the Cathaoirleach's area.

They said there are lots of pockets of land that would be ideal but they will never be developed for housing. We are told that the Department of housing is only interested in 600, 700 or 800 dwellings, such as what is being built behind me. It is not interested in intellectual disability and it is not going to spend time building a cluster for ten people. It will not do it unless it is told to do it.

Essentially, it will requires a partnership between the HSE and an approved housing body to achieve delivery.

Yes, that would work. Again, it needs an attitude of "Let us solve the problem". We discussed this when we were last here, to attend a meeting of the Joint Committee on Disability Matters. I saw Deputy O'Dea this morning. After the fuel protests, he said on radio that the Government seemed to be more interested in process than humanity, and that it was not listening to the stories. To some degree, the HSE silos all of those things. The Government and, in a broad sense, the State have forgotten the humanity. That is really a problem.

I mentioned that Cork City Council and Cork County Council came together. This has opened doors for us and we have represented Before We Die on the steering group committee in Cork city and county councils. That is a good starting point and perhaps we could get that into every all 32 local authorities. The HSE and some service providers are represented on the committee. I am not sure why all of them are not represented. I think the section 38 and section 39 organisations are also represented, as are the approved housing bodies and the Housing Agency. That forum is an ideal place to start with this planning and interpreting. The Living my Life project in Galway has also done a very successful pilot, Remember Us, so we are familiar with this.

We have another meeting tomorrow with Cork city and county councils. What we have achieved is to have the city and county councils come together, opening those doors. If we can see that it is working there, what is to stop it being implemented around the country in all the local authorities? We understand they all operate differently but they all have a steering group that meets every three months. Let us use that as a starting point to get the people talking about people with intellectual disability. We have been left off that pool for so long.

I note that we have been joined by some non-members. We are about to start the second round so I will take the non-members first. I call Deputy Collins, le do thoil.

I thank the Cathaoirleach. I am delighted to meet the witnesses again. They were down in Cork not so long ago and there was a massive attendance. They have huge support, and rightly so.

I will go back to my own time outside of politics when I was on the board of CoAction, as a voluntary member. I noticed that there was no connection between adults who could live on their own and the local authority. I followed that through with a 12-house development in my community in Schull. I am very proud of it and keep talking about it. It was a model that could be copied throughout the country. There were 12 beautiful new homes in the development and I felt that people with disabilities should be entitled to one of those houses. This was three or four years ago but we had a hell of a job getting it across the line. We now have two good friends living together, with the aid of supports from CoAction and with the support of their families. They are getting on brilliantly and they absolutely love their independence. They love their home and are very proud to show it to people.

It is an uphill battle to have that model applied everywhere else, but it can be done. Some believe that there should be specific housing set aside, and that is fine if they feel that, but in this case the two friends are living among neighbours and everybody is happy in that community together. The difficulty that I had to get across, and the point I was always trying to make, is that we were taking two people off the social housing list, which was brilliant in itself, and moving them into one home. That is a fantastic model that could be copied throughout the country. Cork city and county councils, the housing bodies and the whole lot should be promoting that type of model. It may be only in a very small community in west Cork but it should be copied throughout the country. I encouraged my brother to put forward a motion that a percentage of new houses being developed be for people with disabilities who could live independently. I think he has done that. People with disabilities should be respected for doing this. Parents should not be in the dreadful position of trying to get a home for their grown adult children.

I am 100% with the witnesses and any support I can give, I will. I am delighted this committee was able to bring the witnesses before us today because they have been very unfairly treated, as have parents throughout the country. It is great that there is now a national body that is highly respected, as I can prove following the meeting in County Cork. This is an education for all of us. The local authorities, Government officials and the Departments need to sit up, understand and move in the right direction. All the figures are there; I saw them during the meeting in County Cork. The figures are there from A to Z. It is just that people need to start thinking outside the box.

I wish to clarify that we are not talking about respite but housing for people with disabilities.

We have representatives from the Before We Die campaign here to discuss the long-term housing needs of people with disabilities. The discussion is specifically about the housing needs of their adult children with intellectual disabilities.

It is pretty much the same case in County Kerry. There are plenty of people and families who are on to my office on a regular basis. We would all obviously like to see more dedicated houses for people with disabilities. In our case the disabled person's grant is very popular and works well. Many families get extensions built, be they to private or local authority houses. It is the same scheme, but the difference is the local authority organises the work to be done itself.

We should certainly be doing a lot more. This is not an issue that is going to go away. It will unfortunately always be with us. More priority should definitely be given to that area. We have been pushing this in County Kerry for many years.

Funding for houses in general has been an issue, especially since the crash. At that time there was no building happening at all. We are building again, thankfully, but we need to accelerate it. I support the witnesses' case.

I am going to open the discussion for a second round of questions and then, before we come to a close, I will sum up what I think we can do to be useful. There are enough people in the witnesses' lives not being useful, so we will try to be useful as a committee. Ar aghaidh leis an Teachta Buckley.

I have three points and questions. I have correspondence regarding housing, which states that the HSE advises that it is important that the individual with disabilities or his or her advocate-carer make contact with the local HSE disability manager and local authority with a view to discussing housing or social housing supports required. Does that happen, yes or no?

Absolutely not.

Perfect. As per the HSE's 2026 national service plan, funding will support 199 new residential responses, including 152 newly developed places. The plan includes a move towards a more planned and responsive system of service provision to include the development of 72 new planned residential placements. The remaining 80 placements will be unplanned to support urgent need. If the HSE is coming up with its 2026 national service plan and cannot plan for all individuals, that plan is not working.

No, it is not.

Finally, I have here a reply which states:

The HSE advises that while every effort is made by the referring agency to ensure that provision of residential services is close to family and natural supports, taking will and preference into account, there are multiple important factors to be considered simultaneously in order to achieve a residential placement that will best meet the unique and assessed needs and requirements of each individual. Prior to placement, consultation with the individual and their family is undertaken and consent is documented as part of this decision-making process.

Does that happen?

That is so shockingly not true.

It is so far from reality.

It is absolutely disgusting because, in a sense, it gives members the impression that this is happening. None of that is happening. I cannot emphasise enough how absolutely disgraceful that is because it does not happen as a right. Now there is a line creeping into the answers more and more, and it is a kind of patronising nonsense, to the effect that "while we recognise the wonderful work that parents do, we have to acknowledge that the person with intellectual disability may choose to live at home". Of course our sons and daughters want to live at home. Aoife wants to live at home. She is frightened of the idea of moving out. The reality, however, is that I am going to die, so what are they going to do? Wait until we die and then move her anywhere? That "we have to recognise the rights of the person with ID who might choose to live at home" wording is slipping in, but the reality is that they will be in a residential unit. That is just a sad reality of Aoife's life. That kind of word salad is so hurtful to parents when they hear it. It just kicks us back. We have to come back to members and say that this does not happen and that does not happen. That kind of wording is absolutely disgusting.

I will be very brief on this. I read that reply into the record because these are the responses individual parents are getting from the Departments and offices. How are we going to get to the truth if we start with a lie?

My colleague Deputy O'Connell and I will talk to the Tánaiste and the Minister of State, Deputy Higgins, after the witnesses' meeting next week. I will do my best, as I am sure Deputy O'Connell will. The witnesses will get the follow-up meeting in September or October. I will not say a date. I will work within the committee. We have heard a lot here today. We will do up a report to bring forward from here.

Thank you, Deputy Maxwell. I know that is a very genuine offer made by two of the members of the committee.

On behalf of the committee, and as the Chair, I shall take massive liberties now to speak for everybody before we have had a chance to consult, but I absolutely know that we will follow up with the HSE. We are not Miss Marple but we will try to get to the bottom of what important law is being upheld. Let us try to find out what that is because you should not tell someone they have a legal obligation without being able to tell them what law provides for that. We will also engage with the HSE and maybe try to hear from some other groups as well. We have Living My Life and Homes for Us with Remember Us. There is a fair amount going on, if we could try to knit it up and highlight it and let people know what is happening. Everyone has said the same thing: this issue is not going away. It will not resolve itself. There is no lack of love or effort on the part of parents, but we have arrived at the point where we do not want to be patronised any more. We have a real need. We have identified it. The witnesses have done a chunk of work on this but cannot do all of it. They are not going to get out and build the houses. That is the job of the State. I think we are all agreed the State pays one way or another.

It does.

Off the back of Deputy Maxwell's comments, some of the questions the witnesses have put to us, to the Oireachtas, are of budgetary significance. It should be lost on none of us that we are in this kind of pre-budgetary world. The summer economic statement will come out in a few weeks. It would be helpful, as part of those conversations the witnesses might have internally but also to all of us and perhaps as part of that report, that we put forward some of these budgetary proposals. If we do not get certain traction within the budgetary process, the witnesses will be waiting another year. That has to be a core part of what we do.

May I make a suggestion?

Please do.

It might be useful to get in Remember Us and the project in Galway and ask them their timeline, what actually happened and what the inhibitors were. It is a very interesting story of a bureaucracy that is basically putting in place one roadblock after another. What keeps coming up - it is the HSE's golden ticket - is "It is too big and does not comply with Government policy, so we are not going to fund it" or, in this case, "Twelve houses is more than ten".

If it is appropriate - give me a break. There is a crisis. It would be really useful to have a step-by-step account of what happened, where it went, and what the inhibitors and roadblocks are. It seems to be getting over the line but they will believe it when they turn the key.

Nobody believes it until they open the door, absolutely. We will hear from those groups. Remember Us are in my own area and I work very closely with them and with Nora. That is our intention. The living my life project is one where a good bit of work has been done. Nora is at the start of the process but living my life is further on. Again, we will get a chance to hear from them. If there is something that works already, then there is absolutely no need for people to be lashing around reinventing wheels. Where we have something that works, the committee will do all we can to highlight that but also to try to get some answers.

This is not intended to be trite but we will try to keep the issue on the agenda because there is a lot going on. Your issue slips down the agenda sometimes. We will do all we can to keep it at the top of the agenda. This is not an issue that is going to resolve itself. You are parents the same as I am a parent. You want the exact same for your kids that I want for mine, that they will live their best life, that they will thrive and that they will have somewhere safe to be when you are no longer able to look after them. There is nothing revolutionary in that at all. That is what every parent wants.

It used to happen in the sixties and seventies. It has gone backwards.

I understand it did. We want to do all that we can to start moving forward. There is no one else indicating so I will suspend our meeting for a couple of minutes to allow our witnesses to leave. I thank them both most sincerely, not in the sense of "Thank you for all you do, you are living angels." I know that this is like a job, one for which they are not paid, along with the other jobs that they do. As Cathaoirleach of this committee and on behalf of the committee, we very sincerely thank them for the information and evidence they have brought to us. It will greatly assist us with our work. They have unanimous support from this committee. Individual members have indicated that they will also do pieces of work, which is welcome. We will work with the witnesses and we will do what we can to ensure that this issue does not slip off the agenda, which is part of the aim, and that we move forward. We recognise that some backwards movements have happened.