Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion

We have received apologies from Senators Higgins and Seery Kearney. The purpose of today's meeting is to discuss the alignment of disability services to the UN Convention on the Rights of Persons with Disabilities, UNCRPD, in respect of physical and sensory disabilities. On behalf of the committee, I welcome Mr. Damien O'Reilly, Ms Sarah Clarke and Ms Samantha Kenny.

I must remind members that they are only allowed to participate in the meeting when they are in the precincts of Leinster House. In this regard, members joining remotely cannot participate in the meeting. We are online so I ask everyone to bear with us if any unprecedented circumstances or technical issues arise, which can happen from time to time.

Before we begin I must bring the issue of parliamentary privilege to the attention of those in attendance and call on them to observe 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. I also point out to witnesses giving evidence outside of the precincts of Leinster House that we are not sure at this point the extent of the constitutional protections afforded to them. No clear guidance can be given. For members participating they have privilege. Anyone giving evidence from another jurisdiction should be mindful of the statutory regime there. In any evidence that is being given to the committee, if the person giving such evidence is directed by the committee to cease giving evidence, they should do so immediately.

I call now on Mr. Damien O'Reilly to make his opening remarks, please.

Mr. Damien O'Reilly

Good morning. My name is Damien O’Reilly from Cavan. Due to impaired speech and time constraints I am going to ask my personal assistant, Ms Sarah Clarke, to read out my opening statement, on my behalf.

I live a rural area in County Cavan. I have a physical disability, cerebral palsy and impaired speech, due to lack of oxygen at my birth. I attended both primary and secondary mainstream school. This was only possible due to my mother’s persistent fight for equality back in the early 1980s, long before the Education Acts. During my education, I relied on the goodwill of my friends and teachers for support during school hours and my Mam aided me in doing my homework.

It was not until half way through my third year in secondary school that I was granted a classroom assistant who acted as both scribe and interpreter. I completed my leaving certificate in 1999 and got accepted into DCU but due to lack of support, that is, the need of a personal assistant, PA, I was not in a position to enrol in the course. It was this lack of independence that motivated me to find out information about how I could obtain a PA service.

Over the next number of years, I became involved in many disability organisations and was a representative for the Disability Federation of Ireland on the Health Service Executive’s north-east co-ordinating committee for physical and sensory disability for over five years.

I completed a self-assessment and a brief outline of my daily routine and submitted it to my area manager in the HSE. Throughout this time, I was constantly discussing my situation with my peers such as the late Martin Naughton, who were involved in independent living. They had been managing their own personal assistance service via a service provider for at least 15 years and informed me that securing a direct payment and employing a personal assistant was the only way I would achieve independence in my life.

Eventually, after a long negotiation period, the HSE responded positively and I was offered 40 hours per week, which was less than half of what I needed to achieve total independence. I was given the choice of negotiating with service providers, including the HSE, to get best value for funding and to find a service that met my needs. As there was no service provider within the county providing a PA service, I contacted two not-for-profit organisations to see if they were in a position to administer my hours that had been allocated by the HSE. However, through discussions with both organisations it became obvious that it was not going to be economically viable for either organisation to administer my service. This is due to the fact that when the administration costs were taken from my budget, the remaining hours were insufficient for my needs.

I then undertook a certificate in training with the National University of Ireland, Maynooth, a business course with Cavan Partnership, and began drafting a work safety statement and researching sole trader and limited companies.

In 2008, I registered as a sole trader with the Companies Registration Office, CRO, and set up a separate bank account for the business Independent Living Options, ILO, and acquired a payroll service. The company also employs an accountant to audit the accounts every year. In order to comply with regulations from the HSE, I then had to create ILO invoices, time sheets, medical clearance forms and safety statements and, subsequently in 2014, I had to enter a service level agreement with the HSE for governance purposes of my direct payment. This entailed compiling numerous new documents such as risk assessments, complaints procedures and health and safety policies, to mention a few. All of this was necessary to ensure correct management of my direct payment and to ensure continuation of my service.

Upon completion of the establishment of the business and the necessary company documents, I sourced a local agency to provide support as an interim measure for the first few months. I soon learned how restrictive this service was due to the agency working specifically under the medical model of disability, that is, the lady could not accompany me outside the house, do certain tasks in the house, or could not give me my medication. Subsequently, in March 2009, I employed my PAs directly through the company.

The defining difference between a PA and a carer is that the PA works completely under the direction of the person with the disability or the leader. They assist the leader with everyday tasks such as personal care, social and domestic tasks that the leader needs to be completed but they do not “care for” the leader. Unlike a homecare service, there is no care plan. They work under the social model of disability. A PA is often described as an extension of the limbs of the leader.

I then trained my PA’s myself under the social model of disability and being mindful of the philosophy of the independent living movement. During the training, my mother interprets my speech at the start and assists with the health and safety aspects. My first priority when training a PA is to get him or her to the point where he or she understands my speech. This takes approximately three weeks. My PA’s role as an interrupter to me is vital to my independence and to my participation and interaction with other people who may not be familiar with my speech.

When the induction training is completed, the PA works solely under my direction at all times. This allows me to have control over my own life, make my own day-to-day decisions, as well as to attend meetings and social functions, complete daily living tasks and achieve independence in my life.

On a number of occasions over the past 13 years, I have used homecare agencies as a stop-gap measure in between recruiting new PAs. I found that the service they provide, in comparison to a self-directed personal assistance service, is totally inadequate. In addition to this, the associated costs of obtaining these agencies results in less than half the amount of hours I receive from employing my PA directly.

In my opinion, there seems to be absolutely no accountability for these care providing agencies unlike a personal assistance service where strict governance guidelines can be upheld by the person with the disability. This is due to the person with the disability being in control of his or her own decision-making, his or her own service and his or her own autonomy.

This social model of disability underpins the principles of the UNCRPD. Article 19 of the UNCRPD states:

... Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others ... have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

Providing people with disabilities with the opportunity to avail of a personal assistance service not only gives control back to the individual but also fulfils Ireland’s commitment to Article 19 of the UNCRPD. As there is no legal right to a personal assistance service in Ireland, people currently negotiate on a piecemeal basis directly with the HSE. The lack of legislation and clarity around personal assistance services diminishes the rights of people with disabilities. The challenges I faced with obtaining a personal assistance service are not unique to me. This is an obstacle many people with disabilities face throughout Ireland.

In 2019, as part of a national campaign, I lobbied Cavan County Council with a motion for the right to a personal assistance service. This was passed unanimously at local level. I hope this is one small step to enshrining the legal right to a personal assistance service for people with disabilities in Ireland.

It is important to create legislation underpinning the right to a personal assistance service and to promote independent living in Ireland, subsequently upholding the principals of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. I thank the committee for its time.

I thank Mr. O'Reilly for his opening remarks. It was a powerful statement for us to reflect on.

Ms Samantha Kenny

I am a mother to a six-year-old little girl who has various physical disabilities, an intellectual disability and medically complex needs due to a rare genetic condition; my boys, aged 14 and ten, are autistic; and a 16-year-old boy who has no diagnosis. I have spent the past eight years of my life interacting with various agencies across the disability sector, including child disability services and the medical system, as well as attempting to navigate and advocate for my children within the education sector and in life in general.

As a parent and full-time family carer, the past eight years have been extremely eye-opening. I have come across obstacles I never dreamed of and genuinely, the fight to not only obtain support but to also keep it has been absolutely exhausting. In my submission, I wrote about how becoming a parent to children with disabilities massively impacted every facet of my life. I knew from reading accounts from other parents of children with disabilities and adults with disabilities how lacking supports and services are, but it was not until I experienced them myself, that I truly realised how completely under-resourced and broken they are.

My daughter requires 24-hour care seven days a week. She literally relies on those around her to help her navigate life. I foolishly believed that because of the level of care she requires, we would not have to fight so hard and would receive better support than we did with her brothers, which was fairly sparse. In comparison to my daughter, they would be fairly independent within reason. Due to the lack of services and supports within society, we have had to rely on a family member to help us secure a suitable family home and save non-stop in order to make that family home suitable for her, the works for which have not been completed, because, quite frankly, the money it will take to do the adaptation and allow her some semblance of privacy in her home is just currently beyond our means.

As I sit here today in front of the committee, my child does not have access to her own bedroom or accessible bathroom and is relying on her family members to carry all 17 kg of her up and down the stairs multiple times a day to access what the average person takes for granted. My daughter is also ageing out of the charity support we need that provides the only small bit of respite we receive, which is nursing hours. Regardless of the chasing being done, we cannot get an answer on how or by whom this charity support will be replaced, which is terrifying, as it is the only form of respite we get.

My daughter is also a full-time wheelchair user which presents its own challenges, including transportation. We live rurally and have no public transport system that would be accessible to her. In order to transport her from her house - literally anywhere - we had to fundraise for a wheelchair accessible van. Fundraising was our only option. The chair my daughter needed meant the car we were driving was not suitable. There was an element of time constraints and we had no other means or options to fund the van.

Education is also an area many take for granted, but which presented us with many obstacles. This started at the preschool level when we had major issues securing funding to send our daughter over a county boundary to her special needs preschool which is ten minutes away, as it is the type of preschool needed for her, rather than sending her more than 30 minutes away to the special needs preschool in our county, because, that is how the protocols were set up. The transition from preschool to primary school again presented obstacles, not with my daughter, but rather the system and having to attempt to get the appropriate equipment from one building to a building ten minutes away. I never envisioned so much bureaucracy, red tape and delays with her getting and receiving the equipment she needs to access her daily school life.

We also experienced the education system from a different perspective with my two autistic sons who attend primary and secondary mainstream schools. As I am sure the committee knows and has heard from various sources within the media, support systems are varied depending on location, school type and even the principal, especially now that the distribution of support services is decided at the school level and can be dependent on the opinion of the principal of the needs of your child. In our case, it has meant at the primary school level, considerable advocating to ensure my children received not only support but the adequate type of support. The last part is key, because, so often the type of support is decided by someone who does not have the intimate knowledge of the support needed, as the person who needs it or his or her caregiver.

I wish to raise the financial implications of having a loved one with a disability. The lack of services and supports mean many times in the past we have had to privately access services, due to there not being therapists available or those therapists only being available to order and adjust equipment, rather than provide regular sessions to work on the issues my children face. A premium also seems to be placed on equipment once it is discovered to be needed for those with disabilities. This means car seats, seating systems and even occupational therapy items can become expensive and families end up with very long waiting periods to get equipment or if teams deem it as not essential, but rather a want, it is not funded at all.

In our life examples, this includes a chair my daughter relaxes in. The average person enjoys nothing more than coming home and sitting on a couch, but in my daughter's case, it was expected that she should use continually the chair that is very upright and used for activities and eating - akin to someone being expected to sit and watch TV on a dining chair instead of a sofa. We had to source the appropriate seat ourselves, which comes with the added stress.

It has, in my experience, been vastly different to what is so often portrayed in the political sphere when accessing services and supports in life. The funding is not there, the therapists are not available or hard to source or it is hard to fill any open positions; the services are extremely limited and most of them are Dublin-centric and provided by charity, including respite care services and nursing. I thank the committee for inviting me here today.

Hello to both Mr. O'Reilly and Ms Kenny, with a special hello to Mr. O'Reilly, as a fellow Cavan person. It is good to see him. They have raised many issues. What is common to what both of them have said and indeed what we have heard from other people, is the fight for everything. It is a constant battle to get services they require. Mr. O'Reilly mentioned he was involved in disability groups and represented the Disability Federation of Ireland, DFI, in consultation with the HSE. What sort of experience was that? Did he feel he was listened to or did he feel it was a box-ticking exercise and the HSE went ahead and did what it was going to do anyway? He also talked about a personal assistance, PA, service and the struggle he had to get one, which is outrageous. There is a need for a standardised and properly-funded PA service and personalised budgets for individuals that reflect their needs. How does Mr. O'Reilly envisage that? That will happen if we are to realise the implementation of the UNCRPD.

Ms Kenny talked about a number of issues. She referenced education and transport. As we know, disability is not just a health issue, it affects all Departments. I want to talk to her about disability awareness, which she has said is needed. That is very important in that the people who will be dealing with disabled people need to be aware of their needs. It is based almost on funding, which we know is insufficient or badly organised and spent and not always cost-effective. It is not cost-effective to delay interventions. We need to move away from the medical to the social model. Can Ms Kenny expand on the disability awareness training and a common-sense approach to disabled people?

There is too much bureaucracy and red tape, as Ms Kenny said, even for her to try to send her child to the nearest preschool that suits her needs. Just because it was across the border in a different county, there were issues. That demonstrates the lack of common sense and the amount of bureaucracy attached to such things. I thank the witnesses and look forward to their answers.

Which of the witnesses want to respond first to Deputy Tully's points?

Mr. Damien O'Reilly

Regarding the first question, I really enjoyed my time on the committees. I thought they were really worthwhile. I do a lot of voluntary work. It is hard to keep up with one's day-to-day activities as well as participate, but it was well worth it. I often think that the voices of people with disabilities are not heard. It is often the organisations that speak on behalf of the people. The people with disabilities do not get the opportunity. That is my experience and that is the experience of other people with disabilities too.

Regarding the question about the PA service, I feel like, maybe, there should be a section within disability services that can provide some sort of administrative support for personal assistant services such as organising payroll, sourcing insurance, support in recruitment, HR, etc. If this were to come to pass, it would be very important that the staff of such departments understand the principles of the personal assistant service and the philosophy of independent living. They would need to understand what a PA is and the differences between a PA and a carer. There are many differences. For example, a carer cannot go outside the house, but the individual and a PA can and that gives more independence to the person. I hope I have answered the question.

I thank Mr. O'Reilly for those powerful answers to the questions. I also thank Ms Clarke. Would Ms Kenny like to comment on Deputy O'Reilly's points?

Ms Samantha Kenny

Yes. One of the things that I find very hard is the number of hoops we have to jump through. We have to prove that the level of need is there and then we have to write all of that down. We have to fill out a massive amount of forms. I am speaking not of one or two pages but 18, 20 and 30 pages. You spend your entire life advocating for your child and then you have to strip that child down to his or her medical diagnosis, which is soul destroying. When you send the forms off, you are literally at the whim of somebody else deciding whether (a) what you said is true, (b) whether he or she is of the same opinion as you because they do not have as much interaction with your child and (c) even if you are grant aided you then have to go through the rigamarole of paying upfront and waiting for an inspector to come to the house to confirm that the work, in his or her opinion, is done and then you get the grant. That is what happens if the application is financial. If it is for equipment and other stuff, there is a constant proof of need. Therapists have their own opinions on what a child may need because they are not around the child 24-7. On top of that, they have to look at their funding. Sometimes funding wins out over need.

There is network of families behind the scenes, that I am sure politicians do not see, who are literally handing disability equipment to each other that they have had to fundraise for. It is soul destroying watching the family of a child who has passed on dismantle a room and hand over equipment to another family. I do not think people realise that happens, but it does. That is literally solely because other families cannot get funding or equipment. They also may not have access to a therapist at the time. During the pandemic, we lost our therapists. The most profoundly disabled child in my household had no therapist during the pandemic. We were reliant on a pool of therapists, if they could get to us. Our therapists were redeployed. The decision was taken that they were needed elsewhere and, again, we took the hit. I understand that was important in light of the pandemic, but my child's disability did not disappear just because a virus hit. My child grew and she needed access to therapists for equipment and for adjustments and they simply were not there. That happens time and again. We seem to always take the first hit. When there are budget cuts, we take the first hit and we are forgotten about most of the time when there is money available.

As for disability awareness, the medical model does not work. If you read the diagnosis of my child and then looked at my child, they are two completely separate things. My child does not fit into boxes. No matter how much you try to fit her into a box and check that down, it does not work like that. There is an element of nurture in every household and every disabled person is represented differently based on the environment he or she is in as well. There needs to be a look at each family. We need to look at the needs of the family, not just the person because the person is not separate to the family. The person is integrated into a unit. That is completely forgotten as well. They are important elements that people need to take home and look at. As I said in my submission and my opening statement, there is an element of "they can make do with what they've got". An average person would not be expected to "make do" yet my child is expected to do "make do". I find that disgusting, to be honest. I do not think it is fair that she has to "make do" because she has a disability. I hope that answers some of the questions.

Absolutely. I thank Ms Kenny. The next speaker is Senator O'Loughlin.

I confirm that I am in the Leinster House complex. I thank Mr. O'Reilly and Ms Kenny for their very powerful testimonies here this morning and for their written submissions. It is compelling and, to a certain extent, heartbreaking to listen to both of them describe what they have gone through and the barriers they face. I have had previous engagement with Ms Kenny, particularly around education for her daughter and the manner in which the pandemic impacted on her.

My initial questions are for Mr. O'Reilly. He and Ms Kenny spoke about the importance of mothers in terms of fighting for their children and the optimum they need and having to settle then for less than that. Mr. O'Reilly has inherited his mother's tenacity and persistence. I thank him for advocating for her peers as well as for himself. It is important that the committee has an opportunity to listen to lived experiences. Mr. O'Reilly made the point that much of the time it is organisations who speak for him and his peers and that his voice is more important than that of the organisations. It is incredibly important to us. I want to assure him of that.

In response to a question from Deputy Pauline O'Reilly about his role in terms of participating in meaningful consultation Mr. O'Reilly said that while he enjoyed it and found it worthwhile it was also difficult to do because he gets only half the number of PA hours he needs and he uses many of those hours to participate in the consultation. In terms of his personal life, he is lacking PA hours. I ask Mr. O'Reilly to comment on what difference the extra 40 hours would make to him, how important it is that other people with disabilities get involved in the consultation and what recommendations we can make that would help that process.

Mr. O'Reilly referred in his submission to getting control back and how important that is. He might tell us a little bit about the inaccessibility that he has experienced in public health. Following Mr. O'Reilly's responses, I will direct some questions to Ms Kenny.

Mr. Damien O'Reilly

Regarding the first question about the hours, I would have to rely on my mum for support during the evenings, at night-time, weekends and at other times when my PA is not there. I do not have sufficient hours to live a fully independent life. As I explained, I have to rely on my mother to fill in.

That is one of the problems with getting involved in organisations. It is great to be involved but you are losing hours spending time being involved. I have often travelled to Dublin for meetings and although they were really worthwhile attending, when I come home I have to ask my mum to give me dinner because all of my hours for the day will have been used travelling to the meeting. This is the problem. People want to be involved in organisations or consultations but they cannot sacrifice their hours and they cannot do it without the support. I hope that answers part of the Senator's question.

I thank Mr. O'Reilly.

Does Senator O'Loughlin want to put a few points to Ms Kenny?

Yes, please. I thank the Chairman. Samantha is an incredible woman, mother and advocate. I have often heard her speak on the radio about the challenges she is experiencing, particularly with regard to fighting for an educational place for her daughter. What she does out of pure love in terms of supporting her children every morning that she gets up is beyond any of us to try to even empathise and understand.

I have a few questions to follow up from her very powerful statement. A lot of focus in the last 12 months was put on getting assessments. There was a huge waiting list and 92% of that waiting list was cleared but now there is a problem in terms of accessing the interventions that were needed. Could Samantha tell us a little bit about the impact of that?

Unfortunately, I have a very short period in which to ask questions. Samantha was talking about the housing adaptation needs. Could she tell us a little bit about the blockages she received there? Our local authorities need to be far better in terms of cutting out, as Samantha said, the bureaucracy and red tape in terms of providing the needs.

To ask very simply, if there were three things she could change in the morning in terms of accessing what is needed for her children to live a fuller life to the best of their capabilities and capacities, what would those three things be?

Ms Samantha Kenny

I will start with the assessment of need. For starters, getting rid of the backlog of the assessment of need impacted those already in disability services. I do not think people realise that. Because they could not find therapists, we lost therapists to redeployment in order for them to tackle that backlog. I understand an allowance was given to disability services to backfill but they could not find therapists. There were no therapists available to backfill so, again, we lost therapists for that backlog to be tackled. I do not think people are aware of that and that needs to be raised.

As for accessing interventions, all they have done is tackle one waiting list that had legislation protecting the people on the waiting list and put them on a waiting list with no legislation. That is what they have done. That is my view of it. Now those children are going to be left waiting for services because even though we have had an announcement of all these extra therapists, we now have to find people to fill up those places with therapists.

My daughter is apparently currently supposed to have a physiotherapist, an occupational therapist, OT, a speech and language therapist and a social worker. We only regained an occupational therapist after joining the School Age Team back in July. We are using an out-of-area physiotherapist because we do not have a physiotherapist and we have no speech and language therapist. I have a social worker who is not easily contactable and that is for the child with profound needs. The children with autism are under physiotherapy care but their physiotherapy involves them having inner sole appointments and that is it. They are as and when needed, which normally results in an annual appointment. That is it. I end up taking them to private physiotherapy that we have to budget for because otherwise they do not get the care that they need. The model is literally like putting sticking plasters on gaping wounds. The physiotherapists have so many kids, so many hours and so many needs to take care of that they cannot adequately take care of all the needs they have, which means either that children are left waiting or the children accessing services are not given the adequate services they need.

On the interventions, my youngest daughter would do great if she had similar stuff that they have in the US but we cannot access that because we just do not have the funding or the therapists. The model seems broken. It would be great if she had access to regular physiotherapist and OT visits but instead we get equipment adjustments. My daughter has leg splints, therefore, it is leg splints, measurements and adjustments. That is what our visits are for. That is all we get because that is all that can be provided.

I will move on to the issue of housing adaptation, which is a rigamarole in itself. First, you must fill in the application form. Then the council OT comes through and decides what you need in your home. You do not decide what you need; the council OT decides what you need. Then you must attempt to find builders to try to get quotes for everything and quotes for equipment. Then, even when you send that off, in our case, our quote was for €30,000 for the amount of work that needs to be done. The council came back and gave us a grant quote of €15,000. We now have to find the extra €15,000 but in reality, we have to find €30,000 because we have to pay the builder upfront. The work has to be done. Then the council sends an inspector out to make sure the work is done as per the report and gives us the grant back retrospectively. For us to start work on an adaptation, therefore, I have to find €30,000, even though I am eligible for receipt of a grant for €15,000. That is a huge amount of money. I am not alone in this. There are people out there who need larger adaptations than we need. We are very fortunate that we have the capability to ask for help from other people because not many people have that. To date, we had a grant initially given to us back in 2018. It is three years on and I still do not have the adaptation done because I simply do not have the finances in place to do it.

The Senator asked what three things I would change. Adequate interventions would be great, as in if kids needed physiotherapy to have regular exercises, stretching out sessions and massaging or regular OT appointments in order that they could be continually assessed so that as their needs change, their plans of care could change. That would be great.

Some sort of financial support is needed. I know people say we have carer's allowance. Carer's allowance is a means test. Not everybody gets it. In fact, there are hundreds of thousands of carers out there who do not get carer's allowance. Then on top of that, not only are they incumbent to their husband or partner to be the sole financial earner and their value is placed on that financial earner, they may also have difficulties accessing loans. In our case, we have severe difficulties accessing loans because they looked at our financial circumstances, said we had three lifelong dependents and stated that we would not be able to pay back a loan because we have three lifelong dependents.

We were unable to access loans. We need some type of financial support. I am not saying we want money given to us, we would like options whereby we can look at loans that take account of our circumstances and that do not just exclude us because we have children with disabilities.

The final thing that would help is respite care. The only respite care I get is ten hours nursing care from the Jack and Jill Children's Foundation for my daughter and eight hours of home support help for one of my autistic children. They need a break away from me as much as I need some time to myself. During the pandemic, my daughter has spent the past 18 months staring at four walls and my face aside from going to school. Imagine if any other person had to do that. What kind of life is that for anybody? If she went away to respite care, she would be able to have her own holiday with her friends and support workers who would be able to take care of her in the way that she wanted it done, without having to do exactly what mammy tells her she has to do all the time. Respite care services are predominantly provided by charities. In many cases, especially in our area, they are not even open for applications because they are so under-resourced and demand is so high. Respite care is something we really need to examine. In the case of my family, I have not had a night away from my children since 2014, when I was married, and the last holiday I had was in 2002. This is 2021.

Thank you, Ms Kenny, for your honesty and for being so up front. I call Deputy Higgins.

I thank Ms Kenny and Mr. O'Reilly for sharing their stories and experiences with us. Two things struck home with me massively when they were talking. One is what Mr. O'Reilly said about the 40 hours of support that were offered to him, which was less than half of what he needed to achieve independence. That is very stark and, unfortunately, tallies with what Ms Kenny has just told us about potentially getting grant aid towards 50% of the housing adaptation requirement that would give her daughter greater independence. How Ms Kenny has spoken is a reminder to us all of the struggle and the fight for support that parents and families of children with additional needs have to go through. That is wrong. Every member of the committee believes that is wrong and we are here because we want to try to change that. People are already under so much pressure when they have to cope with additional needs in their family that the last thing they need is forms, which Ms Kenny described as soul destroying, being thrown at them repeatedly and having to fight for every little bit of support that comes their way. That is what we want to change.

I have a question for each of the witnesses. Mr. O'Reilly spoke about the process of sourcing his own PA service. It sounds cumbersome. It sounded like an unfair responsibility to put on people. I am interested to hear from him how he thinks it could be improved. I am not sure if I heard him correctly but I thought he said that administrative duties was an additional complication that had to be taken out of the budget or perhaps taken out of his hours. Perhaps he could explain that a little further, as well and give us some advice as to whether that is something in which we can make changes.

One of the many issues Ms Kenny highlighted as an advocate for her children is an issue I have encountered in Lucan in my constituency, which is close to the border with Kildare. It is that county borders are effectively becoming eligibility criteria for certain services. In Ms Kenny's case, it was for preschool. This is something we have discussed in the committee previously so I would be interested to hear Ms Kenny's views on how we could deal with that. I would love to remove that countywide barrier, as it were, and it has been a recommendation of this committee. If we inserted county and-or a 30 km radius, does she think that would be helpful or would it still be very restrictive? I want to hear her opinion on that because that is something very practical we could do quite quickly, and one would imagine it would have quite a big impact on a number of families.

Those are my two questions. I thank both of the witnesses for their contributions. They were very moving, unfortunately. I am very sorry that both of them are in this situation whereby barrier after barrier is put in their way when it comes to accessing services. That is not what any of us wants, and we genuinely want to change it.

Will Mr. O'Reilly reply first and then we can go to Ms Kenny?

Mr. Damien O'Reilly

Yes. Regarding the process of obtaining a PA service, there is no proper process in place. I know that sounds stupid but it really depends on where somebody lives in the country, which is wrong. It should not depend on where somebody is located in the country. Regarding the administration and my direct payments, I do all the administration with the support of my mum. Therefore, the money that would be spent through an agency paying the agency to administer it goes straight back to me in regards to hours, so I would end up with more hours when there is less time being spent on administration. That in turn gives me more independence because my hours are not taken up on administration costs. It is a lot of work complying with everything, with grant aid agreements and all the documentation. People with disabilities do not want to have to do this but they have to because there is no alternative.

I have a friend in Cavan and he is in the same boat as me. As there is no provider of a PA service in this region, where does he go? He cannot access a PA service. At present, he has home carers but he cannot leave his house. He lives in Cavan town and has all the amenities beside him but he cannot leave his home to avail of them, even just to go to the shop. His father, who would have assisted him, took ill a couple of months ago, so he does not know what to do now. He does not know where to go. This is the problem. There is no independence for people. A person is essentially a prisoner in the person's home. Then a person cannot become involved in organisations and have his or her voice heard. It is just wrong. I hope that answers the Deputy's question.

Ms Samantha Kenny

On county borders, I do not think people realise how much they impact on everything, including on funding and therapists. We live in south Kildare and in our case my daughter attends school in Carlow. The special needs preschools are not funded under the early childhood care and education model but by the HSE directly, and the HSE looks at county boundaries for funding.

We had to get a special allowance to go to a preschool ten minutes away rather than, for easiness and lack of bureaucracy, to a preschool 30 minutes away in the opposite direction, which would also be in the direction I take with my other children. If she takes sick, I have zero way of doing basic tasks such as collecting my other children from school and trying to collect her from preschool at the same time. That is why we opted for one ten minutes down the road. I had to go to the media to get funding for a preschool ten minutes across the boundary because there was so much bureaucracy and people were not signing paperwork. I literally had to go to the media to get funding for a preschool.

County boundaries also affect the therapists. Because my daughter lives in County Kildare and attends a school in County Carlow, any therapy work she needs doing in school has to be done by the Kildare therapists. Even though a visit might be happening in school by Carlow-based therapists, they cannot do anything with my child and I have to arrange an appointment from her therapy team in Kildare. This new model, which is removing therapists from school, is now going to happen nationwide. Therapists are being removed from schools. Her school does not have a therapist and only has nurses. Every time she needs a seat adjustment or a stander adjustment, which might only take 20 minutes, her therapist has to travel more than 40 minutes to do a 20-minute seat adjustment because no local therapist can do it and there are no therapists in the school anymore.

County boundaries are not just about funding. Imagine how much money we could save if we did not have therapists travelling for an hour at a time to do one single 20-minute visit and if we had a team of therapists who just went around the schools in the locality. They could take care of basic care, such as making sure standers were adjusted correctly or making sure the chairs the kids were using were okay. If there were issues in the school, they could ensure an OT session was put in place so a schedule could be changed. Instead, we have therapists travelling from 40 minutes to an hour to see one child for 20 minutes. That is the bureaucracy we are facing. It is ridiculous.

Even this 30 km radius would not work for my child because my therapist centre is 40 km away from her school. This needs looking at on a deeper level because the county boundary model is not working; it really is not working. Again, we are going to have kids waiting for seat and stander adjustments because therapists have to factor in 40 minutes of journey time to go and to do this one thing or to try to make sure that all the kids they have in the one school are in school on the exact day they happen to visit, which, as we know, cannot be done because if the child is sick, the child is sick. It is just not working. In my opinion, if we even had a local team of therapists who just did school visits, that would take a massive amount of work off therapists and they would be freed up to provide more care for people in an in-depth, more personal manner. If this happened, we would have kids not just accessing appointments for equipment assessments. They would be able to access therapists when parents are having issues or if the child is having issues, and they could have one-on-one sessions because we would not lose therapists who have to go and visit a school an hour away. If we had a therapist for the school side and therapists who did the day-to-day stuff, that would make a massive difference.

I extend my deep gratitude and respect to each of our witnesses. It can be daunting and even sometimes retraumatising to have to recount all of the ways in which the State is failing their children and their families. These are difficult matters to talk about, much the same as it is upsetting to even hear the difficulties and, as has been explained quite aptly, the lack of common sense in the approach. The lack of person-centredness is what stands out from what has been said so far. I want to say “hats off” to both of our witnesses. On behalf of the committee, I can say it is experiences like theirs that will make the difference to the work we do.

Only 9% of, or approximately 56,000, disabled people access specialist community-based disability services, which is a figure so low that I was genuinely shocked to learn it. I have become increasingly aware of how many gaps there are in disability service provision in this country but I did not imagine it to be that low. These specialist services are actually standard services if people are disabled, and include early intervention, personal assistant services and assistive technology. They are the baseline. If we truly want disabled people to be able to fully and meaningfully participate in society, it is very sad that only one in ten have access to these supports.

I will move to questions. Will Mr. O'Reilly comment on the tension between service providers and disabled people's organisations? What I mean by this is that we have seen the announcement of another budget for 2022 where an additional 120,000 personal assistant hours were granted, which is less than one hour per disabled person spread out over the entire year. I know that not every disabled person would benefit or like to avail of personal assistance but it is helpful to ground the proud announcements in what it will mean for people in concrete terms. Was Mr. O'Reilly involved in the personalised budget pilots and, if so, what where his takeaways from that experience? What does he think the barriers will be to expanding the personalised budgeting model moving forward? What does he think it will take for there to be a radical move away from funding service providers to actually funding more empowering supports, such as personal assistance?

I want to express to Ms Kenny how harrowed I was to hear of her situation, whereby her children were essentially being transferred from one waiting list to another based on their age group and not making it to the top of any of these lists in a sensible time. I know first-hand how frustrating it is when one of your children is not getting the supports they need. For Ms Kenny in particular, having more than one child in this challenging situation must have been even more difficult. My party has been advocating for integrated waiting lists across the board within the HSE to manage waiting times and stamp out some of the bureaucratic inefficiency that leave people in limbo for years. There needs to be joined-up thinking and we have known this for quite some time. I completely agree with Ms Kenny in that regard. I want to ask her about the additional challenges she faces, as a mother with children with additional needs, and the financial burden that puts on her. I also ask her to speak to the inadequacy of the means test for carers allowance in particular.

Mr. Damien O'Reilly

Regarding the first question on the relationship between the service provider and the users, many of the organisations administering the payment are not DPOs. They are running the services but they are not engaged with disabled people. There are able-bodied people running the service in the way they think they should, but they are not asking people with disabilities what they need or what they require, and they are not consulting disabled people.

The Deputy mentioned the budget regarding personal assistant hours. One of the problems with this is that a lot of that money will be spent on administration as opposed to going to straight into services to be used by the individual. This is the main problem in that the administration costs on the payment are very high.

Disabled people have to sacrifice hours of support just to manage the funding in the first place. The money equates to hours so the money being taken to pay for the administration costs means fewer hours for the individual. The Deputy also mentioned the personalised budgets pilot. I was not involved in this pilot project because my company had been set up when it came into effect. I know of other people who engaged in that pilot but they had the same problems. There was not that much support for the individual during the project. There was really nobody to answer questions or assist those involved in the pilot. I hope that answers the Deputy's questions.

Ms Samantha Kenny

I will come in on disability services. As a family, we have been accessing disability services for eight years. My oldest son received his diagnosis via the HSE after a lengthy wait for an assessment of need. He fell through the cracks because the services in our area were undergoing a transition to the pilot scheme that is now being rolled out nationwide. He did not receive any services for nearly three years. They did not know he existed. His case was only discovered because the school sought an in-school visit, following which I got a phone call from the disability services who literally said they did not know my child existed because he had fallen through the cracks during the transition. That was interesting. That was six years ago.

As we are six years on and have had six budgets and increases in funding and therapist numbers, I find it astonishing that, when my youngest daughter transitioned from the early intervention team, where she had some therapists, to the school-age team, she was given none because the team had none to give her. It was not even that she was on a waiting list. She was already in services but, because there were no therapists, she was not given one when she transitioned. It is not even that the disability services model needs funding, but that it needs to be looked at as a whole. They are struggling to get and retain therapists. They are struggling for funding. The lengthy waiting lists will not be resolved by just throwing money at the issue if we have no one to take up the roles. That was what happened in my daughter's case. The services had open positions they were struggling to fill and no therapists were available to her. She requires a physiotherapist, an occupational therapist, a speech and language therapist and we, as a family, require a social worker because I cannot manage it all by myself. The disability services model does not only have an issue in respect of waiting lists, but also in respect of those already in services.

As for the means test on carers, I will have to take a breath before answering. I understand that the threshold for the means test for the carer's allowance was increased in the budget. This was met with triumphant fanfare but I want to stop for a moment and try to let people understand that this is the first increase in 13 years. An average private sector employment contract will have a clause written into it to allow for a 2% incremental increase year-on-year to protect against inflation. That change to the means test will not cover anybody who was close to the threshold if their husband, rather than themselves, received a 2% pay increase year-on-year for the past 13 years. They will not have been snatched back into the net. All the increase has done is to bring back into the net those who lost carer's allowance over the past 13 years or those whose circumstances are now so dire that they fall under the minimum wage.

It has left hundreds and thousands of carers without any financial support. Their financial value is tied to the financial viability and potential to earn of their husband or partner. My value as a carer is seen by the State in terms of the potential earnings of my husband rather than in terms of the 24-hour care I provide to one child or the fact that I have three children with disabilities. On that note, carer's allowance is only paid in respect of one and a half of my children. Do I pick which child and a half I am to take care of, because that is all I am paid for? That is how it works. My value as a carer is not based on the fact that I take care of my daughter 24-7, that I spend my life advocating to try to make society better for her or that I help my two other children gain some form of independence so that they might, one day, be able to leave the family home in some semblance; rather it is based on how much my husband earns. Carers are given a certain amount based on how much their husbands earn. That leaves us wide open to abuse because when that allowance is taken away based on a means test, people are left without an income. This means that, if they are in an unhappy marriage or partnership, they are only given money at the whim of their partner. They are unable to work. I am unable to work. I have an agricultural degree I have never used because I am unable to work. It is insulting that this is how value is placed on me.

I actually sat down and worked out the figures. An incremental pay increase of 2%, which is what is included in an average private sector contract, would add €877.45 over that period. Even a non-incremental increase, adding 2% for every year of the past 13, which is what is included in the average contract to protect against inflation, would add €845. We are offered €750. That represents an annual income for two people of €38,900. That is not a lot of money to raise a family on at all. That is the starting cut-off point and you may still receive some carer's allowance if you go slightly over it, but that is the value being placed on me. I am very upset about the means test and the carer's allowance situation as a whole. I do not feel valued, seen, respected or recognised for the role I play in society. I am very sorry if I am coming across as very emotional but this is a very emotional issue for me. This is the life I am living.

Absolutely. It is powerful testimony. That is what we want here.

I thank Mr. O'Reilly and Ms Kenny. Their comments today have been powerful. I firmly believe that there should be special cases and allowances for particular situations which carers face and that there should not be a means test in these cases. Means testing carer's allowance is not right in general but, in Ms Kenny's case and other genuine cases, carer's allowance and more should be provided for the work being done. No money could equal the value of that work. In her case and others, such a great service is being provided for the State. All these cases genuinely need to be looked at. I am a proud Carlow woman. Ms Kenny spoke about the boundaries. I am very aware of the boundaries in Carlow. We have excellent schools in Carlow but the boundaries are unacceptable. A disability does not know any boundary. Despite this, there are guidelines on boundaries within the policies of the HSE and Departments. That is unacceptable. These are the issues we need to address. Boundaries are not acceptable. They should not prevent people from using the services they want just because they live in counties Kildare, Carlow or Laois. I see it all the time and it is unacceptable. That is something we need to fight on. I will bring up the issue with the Minister of State, Deputy Rabbitte, because it needs to be addressed.

I read in a report yesterday that people with disabilities were those hardest hit by the pandemic. In this report, the National Advocacy Service and the Patient Advocacy Service detailed how people with disabilities were among those hardest hit by the impact of Covid and the associated health measures. The study also outlined how people with disabilities felt marginalised when it came to decision-making. That is a real issue for us. We are not giving a chance to the people we need to have around the table making the decisions, such as Ms Kenny and Mr. O'Reilly.

We need to change policy and we need to make sure that the people affected are the ones who are sitting at the table. They need to have input because they are the ones whose lives are affected. It is not until your own life is affected that you can see these issues.

I welcome that Mr. O'Reilly mentioned Article 19 of the UNCRPD, which states that persons with disabilities should have the opportunity to choose their place of residence, including community services, facilities and so on. That is so important and it is a major issue we need to address. I also compliment Mr. O'Reilly on lobbying his local council to get a motion passed. It was so good to hear that he lobbied his local county council with a motion for the right to personal assistance services, which was passed unanimously at local level. I compliment him on that. We need to hear that he was doing so much great work. We need to look at legislating to underpin the right to a personal assistant.

Many of the questions I was going to ask have been asked. I will ask Ms Kenny, as someone who knows the services and where they are failing, when we speak about boundaries, the HSE or services, where does she think the joined-up thinking could come from?

Should Mr. O'Reilly look at submitting his motion to all 31 local authorities? It is important. I am passionate about this motion. Will he let it go to all 31 local authorities? Can we, as a committee, work with him to see what we could do to help with legislation?

I thank the witnesses very much for their stories today. It is not until you are in that position that you realise how affected families and children are by it. It has an impact on all the family, including a mother, father, aunt and uncle. Everyone is impacted when we have not got proper services.

Mr. Damien O'Reilly

On the reference to institutionalisation, I cannot understand this approach from the Government because by institutionalising people with disabilities, it is taking away their rights. On top of that, it costs far more to have a person with disabilities in residential care than to have them in the community with appropriate supports. That way they can live in the community with their rights respected and can participate as equals.

The Deputy mentioned the motion I submitted to Cavan County Council. I am a member of Independent Living Movement Ireland, ILMI. I lobbied and got that motion passed in Cavan as it was part of a national ILMI campaign throughout the country. People from different areas lobbied their councils and got the motion passed. Almost every county council in the country has passed it now, which is a great achievement. I hope that answers the Deputy's question.

Ms Samantha Kenny

I will answer the question about who committee members should talk to in order to get a proper overview of boundaries in disability services. It is front-line workers, but the problem is there needs to be a way for them to talk in an anonymous fashion as they will be afraid to speak up because of how it will impact them in their jobs, careers or lives. If you want to know how boundaries are affected and how disability services need to be fixed, talk to the people on the ground. I have not met a therapist yet who does not want what is best for anybody on his or her client list. Therapists want what is best. I have spoken to them and they have said their hands are tied by the number of people they have to see and the funding they have. They would do so much more if they could, but they cannot. This includes physiotherapists, occupational therapists, OTs, speech and language therapists, social workers and everybody at the lower level. I know this sounds ridiculous but cut out the management and go directly to the source to make sure it is done in a way that remains anonymous, so they speak freely knowing they do not have to worry about having some sort of hit-back at them. I hope that answers what the Deputy asked.

I thank Mr. O'Reilly and Ms Kenny for their powerful presentations. I am standing in for Senator Higgins today. I am heartbroken and shocked to hear what the witnesses had to go through to get basic and simple human rights. I want to talk a little about the current system and ask a couple of questions on it. I am hearing this morning that both Mr. O'Reilly and Ms Kenny have to constantly fight for supports within the current system. I do not know where they get their energy from. It must be so exhausting and, as Ms Kenny said, soul-destroying, to constantly advocate and fight for supports and that Mr. O'Reilly, his family or Ms Kenny constantly have to re-prove they need those supports.

Do they feel that having to do that infringes on their rights to family life and independence? What effect does the current absence of a statutory right to home care and personal assistance services have on their well-being and that of their families, their mental health and their ability to plan for the future? Will they say a little about that? It is no wonder Ms Kenny is getting emotional about this because I honestly do not know how she keeps going and where she gets her energy and power from. It is the same for Mr. O'Reilly. They have to constantly fight all the time for their basic needs. What effect does it all have on their well-being, ability to plan for the future and mental health?

Mr. Damien O'Reilly

People with disabilities always ask why they have to reinvent the wheel the whole time. Why do we always have to push and fight for our rights? It can be very tiring and hard because you just feel you are taking up time fighting and time, generally, that you could spend doing other things with your family and friends. It is just constant heartbreak and arguing for your rights. Ms Kenny talked about the struggle to get adaptation grants. I had to go through all that and it was another fight. I had no accessible bedroom in my family home. In order to work with a PA, I had to build on to my family home.

Again, because of a lack of appropriate grants I had to get a loan from the county council and I must repay that loan every month from my disability allowance. It just goes back to my point that it is a constant battle just to live and get on in life. I hope that answers the question.

Ms Samantha Kenny

On the question of well-being, as a parent, you spend your entire life empowering and building confidence in your child so that, we hope, the child will turn into an adult who will be empowered and confident in going out into the world and living his or her life. Now imagine being that parent, who has spent all that energy and put all that work in with a child, only to have to go to an agency and rip that child apart just to get a service. That is what we have to do. We spend all our time telling our children how they are able to do this and they just need to find a different way but to access a service, one has to list every single thing that society sees as wrong with one's child. That is a very hard task. The well-being of the family is massively affected.

There is the question of trying to future-proof. I have a 16-year-old who came to me at 14 years of age and told me not to worry about what will happen to his sister when I die because he will take care of her. He was 14 at the time he said that. That came from nowhere because he overheard a conversation where we were trying to work out guardianship should anything happen to me and my husband. We need to look at guardianship because we do not want our daughter to end up in residential care. We bought a house intended for her and it is the house she should live in. He overheard a conversation where we were trying to work out guardianship so at 14 years of age, he came in to me and stated "you do not need to worry about my sister because if anything happens to you and Dad, I will take care of her.". A 14-year-old should never have to utter those words.

This affects the whole family. He also told me not to worry about his two brothers because he will keep an eye on them as well, although they are fairly independent. I am very lucky to have the children I have. We do much work in our house on mental and emotional well-being because the system destroys us. We fill in reams of paperwork where we literally write down everything that is wrong with our child. We have to prove everything that has been written so we must take our child to these services and hope the child is having a bad day, because if she is not, we might not get the service. There is added stress involved in keeping the service and hoping the child does not improve too much, which could lead to a loss of the services. Imagine hoping your child does not improve too much so you can keep care services. It is a horrible position and no parent wants to be in it. No parent wants to be constantly thinking about every weak chink in the armour that is being built for a child but it is what we must do constantly, day after day.

What makes it even worse is there are no specialised mental health services for our family. Any therapist services or counselling I have done came through word of mouth from somebody who had experience with this and would have known how to handle my situation. This is so I do not find myself in a room with somebody who is so shocked by what I am saying they are unable to support me. There are no sibling counselling services so my oldest child has not availed of any mental health counselling services. There is none for him.

To get counselling services outside the private system, one must jump through the current hoops. A medical card holder gets six free sessions and must wait for them. It is a six-month wait to access those sessions. After those six free sessions, one must wait another year to access six free sessions. There are no dedicated mental health services for families like ours. I may sound ungrateful but in our position, six free sessions do not even scratch the surface. We cannot do enough work in six free sessions to ensure everything is okay. Mental health services must be looked at in conjunction with disability services.

Many reports have been published on this. Family carers, caregivers and people with disabilities all suffer with their mental health simply because they constantly have to fight to access services. Even if we fix the services, there is a group of people who have been traumatised by having to fight for those services and prove they are worthy of them. Imagine having to prove you are worthy enough to access basic care. It is what we have to do. We must prove we are worthy enough to access basic care.

That is my perspective on our well-being or how we are trying to manage our well-being. I hope it helps to answer the question.

I thank Mr. O'Reilly and Ms Kenny for their forthrightness this morning, which has been a revelation. Sadly, since I got into national politics, which is coming up to six years ago now, I have dealt with similar cases on a weekly basis in my constituency office. The first time I sat on this committee I said there are things going on that we should not be proud of as politicians and we must start putting them right.

I do not have too many questions because we have heard much from the witnesses. At this stage the housing adaptation grants from local authorities are not fit for purpose relative to the cost of doing work, taking into account the gap between getting the work done and getting paid. There is also a shortfall that puts a financial burden on families. The flat adaptation grant must be tailored specifically for the needs of the household at the time. That is instead of a block grant for doing something, with the threshold decided by the local authority and which has no real bearing on the overall cost.

Children need early intervention and assessments and the process is a struggle from start to finish. Once assessments are done, parents must continue to prove disabilities year on year or time and again if they are seeking additional service or when there is a review of services. I have told before of a case of a child who is blind since birth. The parents of that child must prove that blindness all the time and as Ms Kenny has said, they must bare their sole in laying everything out time and again to prove the child is worthy of the service. That is demoralising or even worse.

There were statements about the carer's allowance. I understand the point is that if wages or income in the family increase, the threshold for the allowance is not increasing in line with it. There are 13 years of a static carer's allowance threshold but with inflation or whatever, wages are going up, meaning people can find themselves out of the net fairly fast. It is something we must look at and I see it with medical cards. If a social welfare payment increases by a fiver per week, sometimes people can fall out of the net and lose that medical card because of that fiver of an increase in the old age pension or other social welfare payment.

There is much for us to consider. Ms Kenny mentioned counselling services for the wider family. On this committee we have an opportunity and responsibility to take what the witnesses have told us and to bring into effect the required changes. Those changes require funding and we cannot hedge around this just by preparing strategies. We must ensure we provide the necessary funding for consultants, psychologists and teams in place.

We must also ensure we have cover when people go on holidays or maternity leave so a gap is not left to be filled after somebody has left. It is criminal that we have a system like that and that we do not do a bit of pre-planning to make sure a seamless service is available through the year. That takes money, time, management and accountability.

I assure both witnesses we will work closely as a committee. What we have been told today has been of immense value to me and I thank the witnesses for that. We will try to help the Minister of State, Deputy Rabbitte, to extract more funding to ensure what we need to do will be done and properly funded. We have to legislate to make sure human rights are protected. That is what it is all about.

I thank both witnesses for taking the time to share their experiences with us. I cannot imagine how exhausting it must be to tell another group of people about them but the insight they give us is invaluable as we try to improve the State's adherence to the UN convention. I do not think there are any words to convey the fortitude the witnesses have had to show to access services that should be automatically provided as a bare minimum.

Many of the important questions have been asked but I have one question for each witness. Mr. O'Reilly's explanation of the difference between PA and carer was useful. The PA model, whereby the person with the disability is the leader, seems like one we should aspire to for as many people as possible, where appropriate. Is this the model Mr. O'Reilly thinks we should invest in more to ensure people become as independent as possible? Should it be the default model rather than the outlier?

Senator Black asked Ms Kenny the question I wanted to focus on but I will ask an additional one. As a rural Deputy, her description of the lack of accessible public transport is familiar. She discussed the fundraising she was forced to carry out to get a suitable vehicle for her daughter. It is disgraceful that she had to do that. It shows the generosity of communities and where the State fails. We always see communities, individuals and families filling the gaps where the State fails to provide services and infrastructure. Can Ms Kenny elaborate on the importance of the accessible car and the absence of funding to help?

Mr. Damien O'Reilly

I definitely think the PA service is the way to go. With a PA service, it is a completely different dynamic to a carer or home care service or support. You can attend appointments, get a job and go to college. Overall, there is more independence. The PA service will work better because it works under the social model as opposed to home care support, which works under the medical model and the service is restrictive. Every day I would have to bear in mind health and safety and what I can and cannot do but for everyday things the agencies are restrictive in the tasks they can perform. The administrative costs of obtaining an agency are also quite high. The PA service under the social model is the way forward. I hope that answers the questions.

Ms Samantha Kenny

I will give a quick overview of how transport is important to us. We live 6 km from our local town on a busy main road in rural Ireland. We are not far from the county. We are in south Kildare. It is not like living in Mayo; it is what people would still class as civilisation. To leave the house, Ava has to get in her van. That is the only way she can leave the house. We cannot go out for a walk because the road is too busy. The nearest bus stop is about 700 m away but we cannot walk to it and, if we do, she cannot get on the bus because it is a minibus with steps. If we want to access public transport, we have to drive 6 km for accessible public transport. When we drive those 6 km, we have an unmanned railway station so we have to give notice to Iarnród Éireann to make sure we can get on a train. If we want to go with the intercity coach, we cannot get on it because it is by steps. Ava's wheelchair does not fold and she cannot walk. The local town link bus is the only accessible form of public transport in our area that is manned.

We literally cannot survive without our accessible vehicle. The reason we had to raise funds for it was that Ava had to change wheelchair and the wheelchair she changed to could not be folded and was too heavy to lift in and out of a car. They withheld the wheelchair from me until I got accessible transport because it was a health and safety risk that I could not get it in and out of the car. They could not give it to me because I would hurt myself. We had to raise funds because we could not get a loan. We tried to get loans in the past and could not. We did not even raise funds for a new van - we got a second-hand one.

The scheme in place for wheelchair-accessible vehicles is not accessible for the average family. The scheme, to my understanding, is designed so you can change your vehicle every few years and not have to worry about breakdowns and things. The only way to do that without paying a substantial amount of money to upgrade the vehicle is to buy new.

We were recently quoted for a new van. We are looking at €32,000 for the van and €20,000 for adaptation. That is €52,000 for a wheelchair-accessible van, with VRT and VAT removed. That is after they have taken the scheme. If we went down that route, we have been told that in two years' time we can trade it in and might only have to pay a few thousand euro to upgrade to a new one. That is the scheme we have. It is not accessible so people are buying second-hand vehicles that they are keeping on the road as long as they can, getting loans they have to pay back or depending on family again.

Wheelchair-accessible vehicles are not optional extras for many families like ours. We rely on them to get around in our day-to-day life. Our daughter cannot leave the house without one. Most are diesel or petrol models. There is no electric alternative. With the new measures in place, in ten years' time we will struggle to find a van because there is no provision for us in the new green measures. We are trying to stop diesels being produced. Currently there is one electric model being provided by a single dealer. I do not have the heart even to ask how much it will cost. I know I will never be able to afford it. We have the worry hanging over our head that in eight years' time we may not be able to buy a new van if there are no second-hand vans around because they are not being produced anymore. On top of that, we are being hit with a carbon tax measure when it hits diesel because we all drive diesel and petrol vans. That goes to the end user again and that is our only form of transport for all our families, which was not taken into account.

Public transport does not exist for us. The accessible vehicle scheme is not working and is dependent on the dealer. It is a retrospective grant as well, so a person must have the money to pay up front and then claim back the tax. There is a waiting time to get the money back again. It does not feel like a great deal of thought was put into the scheme. It feels like a box-ticking exercise so that people can say they thought about us because they put this scheme in place.

I welcome Mr. O'Reilly and Ms Kenny. I cannot say I enjoyed their testimony because it was heartbreaking. Incredible and powerful advocates are again appearing before us, for which I thank them. They have laid the hard truths out in front of us. We all encounter these cases in our constituencies, with people coming to our offices and talking to us, but it was powerful to hear today's testimonies and important to have them on the record.

When I was a member of Louth County Council, I was glad to propose the PA services motion and get it passed. I worked with many Fianna Fáil colleagues from around the country on ensuring that the motion was passed in the final few counties. I believe that all county councils have now passed it, although we still need to hear back from a few on whether that is the case. It is important that they pass it.

I do not have questions, but I will make a few points following on from the testimonies and conversations. This is a struggle. People with disabilities are constantly fighting. It is soul destroying. That is what the services are doing to them and their families. I ask the Chairman for some action to come from today's meeting, particularly in respect of PA services. Could we get an official from the HSE to appear before us to discuss why PA services are not regulated, why there is a different system in each CHO area and why it is down to each disability manager to design a service? The service is not working efficiently or effectively for people. It would be important to have a HSE manager of whom we could ask these questions appear before us. I am glad to see that more money has been made available in this budget. We need to ensure that it is used for actual PA services and not, as Mr. O'Reilly mentioned, administration. The latter cannot be allowed to happen. The Minister of State with responsibility for disability fought hard to get extra money for PA services in her budget.

Turning to a second action, we might also have a HSE manager appear before us to discuss why the system is so inflexible. Ms Kenny referred to a ten-minute journey versus a 30-minute one for her children to go to school. That is ludicrous. There is an inflexible "computer says no" attitude, but we are not dealing with computers. We are dealing with humans, and our citizens who use and require these services deserve flexibility. This committee has heard testimony every week about our rigid system. We need to start questioning the people who deliver the services, namely, the HSE.

If Mr. O'Reilly or Ms Kenny have comments to make on my suggestions, I would appreciate hearing their thoughts. I have learned a great deal this morning and I thank them for their time.

We will go to Mr. O'Reilly and Ms Kenny for closing remarks and responses.

Mr. Damien O'Reilly

Thank you. I could not agree more with what Senator McGreehan said. I just got so angry when I was talking about funding. The funding may be budgeted for and provided, but much of it is going through organisations from which the end user does not benefit. Plus, it is being put through organisations in a system that is still under the medical model. It would be great if the first action was taken and the committee consulted the HSE. It would be absolutely brilliant.

Ms Samantha Kenny

I agree. The HSE needs to be asked. From our experience, there is a massive over-reliance on charities and NGOs to provide services that the HSE lacks. That is not right. We depend on a charity for nursing hours. Personally, we are ageing out of that charity. I have no idea who will provide my nursing care. I am not getting any feedback from anyone. It is "computer says no" or there is no one there from whom to get a response. I am not alone in this - it is a common issue for families in similar situations.

Something else I might ask to be raised is the loco parentis rule in terms of nursing care. Under it, nursing care is provided but there has to be another adult in the house with the child. This basically means that nursing care is provided but the parent is not given time away. What is the point in having the nursing care if the parent cannot leave to do what he or she needs to do and that cannot be done when the child is with the parent? This rule needs to be reviewed, although I know it was reviewed previously. Nursing care has been referred to as support rather than respite. Nursing care is support - it is not respite. It is not that we want time off. Rather, we need space to go to a bank. Otherwise, we have to drag our child with a wheelchair into and out of a car and through an inaccessible building just to lodge money. It is not that we want time off to go to the cinema and have a meal. Rather, we use those hours to do basic things like take a sibling to a swimming lesson. I cannot do that if I have to stay in the building with a nurse. If I do not stay, then other family members have to. What is the point in having a nurse if a family member has to stay with the nurse? This rule needs to be examined. It is not support if we have to stay there.

I thank the committee for giving me the time to have my say and put my point across on the issues we have raised today.

I thank Mr. O'Reilly and Ms Kenny for their contributions. I listened to their evidence and to members. This discussion is one of the most powerful to be held in the Houses today. At times, I challenge the media about the coverage it gives to heartfelt stories like the ones our witnesses have given us. They showed courage in putting their personal stories on the public record and did so with dignity, passion and succinctness. Their evidence this morning has been about their voices not being heard, there being hoops to jump through and boxes to tick, the advocate and the mother. We should never be afraid to thank the mothers in particular, but the parents of Ireland who are doing so much in terms of advocacy, dedication to their families and trying to advance their children's causes and make life better for those who follow. We should always acknowledge that.

We must bear in mind the motion that was tabled at Cavan County Council and across the country, the level of commitment and the need to see how we can address the various challenges.

Regarding the point made about the carer's allowance, I made the point last week in the Dáil that the means assessment should be replaced by a needs assessment if care is being given. That is the real challenge - making sure people are respected and acknowledged.

Regarding the points made about PA services and the HSE, we hope the HSE will appear before us at some stage in the near future so we can challenge it on the issues, the rigidity and the paralysing of the system for some small change - someone who is living 100 yards from one county being bounced to the other and travelling. We need a common-sense approach and someone needs the authority to make a common-sense decision.

We have an awful lot of work to do. We discuss the UNCRPD every week, which is a fine document, but the lived experiences of people with disabilities and their families in our country are what should drive us every day. As other members have said, this committee hopes to try to advance the witnesses' causes and the causes of people with disabilities and will continue to do so. I know all members have very busy schedules. They are running in and out of the Dáil to take questions or are going into the Seanad for quorums and Commencement matters. However, by and large, all of them stayed on the call this morning because of the powerful testimony given and I thank them for that. We have an awful lot of work to do. I thank Mr. O'Reilly and Ms Kenny for their powerful evidence this morning. I hope we get some coverage of what this committee is trying to do. I again thank the members for their dedication and passion for what we are trying to do. We will continue to do that. Our team will keep everything running.

The joint committee adjourned at 11.43 a.m. until 9 a.m. on Thursday, 4 November 2021.