Dáil debates

Tuesday, 11 October 2022

Disability Services: Motion [Private Members]

 

8:15 pm

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I move:

That Dáil Éireann:

acknowledges that: — Budget 2023 has failed to resource and fund disability support services and infrastructure that the Government itself has identified as essential to meet current and future unmet need for children and adults;

— the Government's additional Budget 2023 allocation of €29.3 million to build capacity in disability services falls woefully below the recommendations of the Disability Capacity Review to 2032 - A Review of Social Care Demand and Capacity Requirements to 2032 - published last year;

— the transfer of specialist disability services from the Department of Health to the new Department of Children, Equality, Disability, Integration and Youth has still not taken place, over two years since the formation of the Government;

— the Government has not published the disability capacity review action plan to 2025, or set out how the inadequate 2023 Budget allocation aligns with the reviews' recommendations;

— the Independent Living Movement Ireland completed a review of the Disability Capacity Review to 2032, and made a series of enhanced recommendations for the implementation of rights-based services;

— the Ombudsman for Children raised again their concern with the United Nations Committee of the Rights of the Child that the Disability Act 2005 is insufficiently child-focused and rights-based;

— the employment vacancy rate across the Children's Disability Network Teams (CDNTs) is over 28 per cent;

— there are 17,000 children waiting for "initial contact" with a CDNTs and 2,500 children whose Assessment of Needs are already overdue; and

— Sinn Féin have outlined a fully costed 10-year strategy to implement the disability capacity review, which would have started with an additional €153 million investment over and above existing levels of service requirements in independent living, decongregation, respite services, CDNTs, day services, residential care, home support and personal assistance packages, as well as investment in clinical rehabilitation teams and training and development funding for Disabled Persons Organisations (DPOs); commends the work of DPOs, advocate organisations and all those providing care and support to children and adults with disabilities;

cautiously notes the indication by the Tánaiste and Minister for Enterprise, Trade and Employment speaking in the Dáil on 29th September that there will be a new policy approach to the provision of Assessments of Needs and access to therapies and other supports; and

calls on the Government and Minister for Health, Stephen Donnelly TD, to: — publish the plan for the delivery of a new approach to assessing and meeting the needs of children with disabilities and neurodiverse children alluded to by the Tánaiste and Minister for Enterprise, Trade and Employment, including the funding that is being allocated to it and the timelines for delivery of same;

— ensure that any new policy approach or any review of the Disability Act 2005 will not be used to undermine the current rights of people with disabilities;

— immediately publish the disability capacity review action plan to 2025;

— ensure that the action plan adopts a rights-based approach which is in accordance with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD);

— increase the Budget 2023 additional allocation to disability services to meet the investment targets set out in the Disability Capacity Review to 2032;

— establish a high-level group, to include the Taoiseach and the Minister for Health and Minister for Further and Higher Education, Research, Innovation and Science to implement a 10-year health workforce strategy;

— progress delivery of the terms and conditions for Section 39 workers equal to their public service comparators; and

— ratify the Optional Protocol to the UNCRPD.

The current and previous Governments have continually under-invested in disability services. This is evidenced by the level of unmet need across disability services which was highlighted in the disability capacity review published in July 2021. The purpose of that review was to estimate the scale of current outstanding need for specialist disability services and how the scale and shape of need is likely to evolve over the years up to 2032. The review was a sensible and prudent undertaking as we need to know the challenges that are in front of us if we are to have a disability service that can deliver the social supports needed to enable people with disabilities live truly independent lives.

The review's findings are stark. It says that to address unmet need, alongside demographic change, would require current disability spending in 2032 to rise by €550 million to €1 billion above its 2018 level to deliver the capacity required. As well as that, additional capital spending for housing to complete the closure of residential institutions would cost in the region of €500 million to €800 million over the period to 2032.

With these figures in black and white the Government in budget 2023 has once again failed to resource and fund disability support services appropriately. This is the second budget since the capacity review was published so two opportunities have been missed.

The Government has not even published a plan to implement the recommendations of the capacity review although it initially committed to doing so by December 2021. This implementation plan must be published without delay. The Minister of State recently said it was already completed. Why was it not published before the budget so its recommendations could have been acted on? Sinn Féin has outlined a funded strategy to meet the needs of people with disabilities out to 2032 in our alternative budget this year. We would have invested an additional €153 million in disability services compared with the Government's dismal €29 million.

Regarding CDNTs, my constituency office is contacted every week by parents whose children have been on a waiting list for an assessment of need for between two and four years. Approximately 17,000 children are awaiting initial contact with a disability network team and assessments of needs for 2,500 children are overdue. The total extent of waiting lists for disability services is currently unknown due to poor data systems. Underinvestment in IT infrastructure is holding back the entire health service, including the disability services.

The staff working in CDNTs are under immense pressure to deliver interventions and assessments while there is a vacancy rate of approximately 28% across these teams. That is almost one third of its workforce not in place. How are they expected to deliver interventions and assessments in this situation? The backfilling of therapists who are on maternity or paternity leave is not funded and this makes up a significant portion of the vacancy rates. Why has this not been addressed? The Government simply does not have a plan to deal with this. It has not dealt with the problem of professional progression within CDNTs and the staff are leaving to go to primary care or the private sector. There is a disparity between HSE and non-HSE workers who are working together and carrying out the exact same jobs. The Government needs to publish a costed multi-annual plan to deal with waiting lists and staffing problems in disability services without further delay.

In response to a parliamentary question I submitted regarding the number of additional therapy courses being introduced for this academic year where the HSE has identified a significant skills shortage such as speech and language therapy, occupational therapy and physiotherapy, I was informed that an additional 15 physiotherapy places were to be made available, nine at level 7 and six at level 6. There was no indication in response that any additional places were made available for speech and language therapy or occupational therapy even though the Minister in response said that "the matter of health workforce planning and ensuring an appropriate pipeline of qualified healthcare workers within Ireland is a major priority for my Department." Is that really true? Are 15 additional posts the extent of what the Government considers a priority? I am hoping the information in the parliamentary question is somehow incorrect.

The Government urgently needs to address workforce challenges with a serious workforce planning group led by the Taoiseach, to include health and higher education. While I cautiously welcome the indication from the Tánaiste that there will be a new policy approach, it cannot be used to dilute the rights of people with disabilities in the Disability Act. We have already seen the Government try this approach and make the situation even worse. The Government must adopt a rights-based approach to disability services in line with the UN Convention on the Rights of Persons with Disabilities. It needs to publish a costed multi-annual plan to deal with waiting lists and staffing problems in disability services. Crucially it needs to ratify the optional protocol to the United Nations Convention on the Rights of Persons with Disabilities.

8:25 pm

Photo of David CullinaneDavid Cullinane (Waterford, Sinn Fein)
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We have had several debates on disability services in this House in recent years and especially over the last 12 months. These have been particularly on the children's disability network teams but go across a whole range of areas impacting children and adults. We certainly have introduced a number of Private Members' motions and there has been very significant debate. The Minister of State, Deputy Rabbitte, visited many counties and spoke to parents of children with disabilities. I am sure she heard the same stories that we did of parents who simply cannot get access to services for their children. It is really frustrating for them when they see a review that was carried out, a ten-year plan that is not being resourced. There is no implementation plan and no annual budgeting. Based on the capacity review that was set up, the cost is between €600 million and €750 million over ten years. However, the recently announced budget contains just €29 million of new funding for measures across all the services for people with disabilities which is a drop in the ocean compared with what is needed. We proposed a package of measures costing €153 million because that is the scale of the investment which I believe is necessary.

Some 1,800 individuals are living in congregated settings and 1,300 individuals under 65 are inappropriately placed in nursing homes. There is no clarity on when they will be moved out. I do not see any multi-annual plan. Some 7,000 people are in need of personal assistance with no support for independent living in the coming years. This was also part of the capacity review but again I do not see any multi-annual plan. It certainly fails to give a break to parents and carers in need of respite services with at least 20,000 additional respite hours and 7,400 day-service places needed over the next ten years.

The capacity review was done to identify needs and it is up to politicians and a political system to provide the funding for it. I would imagine the Minister of State looked for more money. Ministers do that and there are tensions within governments. The Minister of State needs to fight her corner. We have met all the advocate groups in recent weeks. They have told us very clearly they are disappointed in the extreme. I am sure all the parents who are battling to get services for their children are equally disappointed. Organisations, including Independent Living Movement Ireland and many others, are concerned that even the figures in the capacity review are not accurate when demographic changes are considered. They would argue that there is even greater need in some areas.

I finish by raising the issue of the children's disability network teams. I know we have raised this time and again. The Minister of State has come back to us and asked what solutions we have and we have talked about solutions. We need once and for all to put in place a workforce planning strategy that addresses the core problems in this sector. We know we need to train more graduates and obviously that needs to be done across the board in healthcare. We need at least double the number of graduate and undergraduate training places. We also need to deal with a range of retention and recruitment issues. Time and again we have raised this with the Minister of State. Deputy Tully and I visited a number of network teams that are providing these services. There are section 38 section and 39 workers who are on lower rates of pay and do not have pension entitlements doing exactly the same work in the same team as a HSE employee. How in God's name is that sustainable? How can it be right? That is causing some problems.

We looked for a sponsorship programme to be rolled out. We looked for therapy assistant grade positions to be made available. We looked for an international recruitment campaign. I am pleased that some of these grades are now on the critical skills list which is important. However, not enough is being done. I am not confident that there is a plan in place. The bottom line is that the people who are failing are those children.

Almost a year ago, Deputy Tully arranged a briefing in the audiovisual room with parents of children with disabilities. As I have said to the Minister of State before, it was heartbreaking to hear their stories. I have travelled the length and breadth of the State and attended public meetings. Parents are sick and tired of hearing about plans, strategies and reviews. All they want are services for their children and some sense that we will get a grip on the waiting lists.

The State was taken to court because it was taking shortcuts with assessments of need and they are now on hold. While that is an issue, the biggest issue is to have the capacity and the staff to provide services to those children, irrespective of whether they have an assessment. The short answer is that for far too many of those young people we do not. It is heartbreaking to look at a child or talk to the parent of a young adult where early intervention has passed them by. We know it will happen again, which is shameful.

Photo of Kathleen FunchionKathleen Funchion (Carlow-Kilkenny, Sinn Fein)
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I commend my colleague Deputy Tully on all her work not only in introducing this motion but in general. She is our representative on disability matters and also sits on the Joint Committee on Autism.

In my two and a half minutes, I want to raise the issue of day services in the south east, particularly in Carlow-Kilkenny. I was recently contacted by parents who have been given notice that their day service now needs to start charging for some additional activities. There has also been an increase in transport costs. I see both sides of this argument. I have also met with management in some of the day services, which are struggling. It is like the voluntary contributions in schools; they do not want to have to charge for it. The parents of people in a day service are unsure when this will end.

The reason I take the opportunity to raise it because a number of parents were hoping to meet with the Minister of State, Deputy Rabbitte. We had a very successful meeting, possibly two years ago, about another issue in the south east that got resolved. I take the opportunity to ask the Minister of State, Deputy Rabbitte, if she would be open to that. It would be a constructive meeting to try to find a resolution to the issue.

Sometimes I am not sure what more we can say about the lack of services for children with additional needs, whether it is the case that they are waiting on an assessment or a therapy. I also wish to briefly mention housing as that part of it sometimes falls through the cracks. People with disabilities have difficulty getting housing. Recently, I met two people who must carry their severely disabled 15-year old son up the stairs and they cannot seem to get allocated a bungalow.

Another issue I wish to briefly raise relates to a woman who was recently told by the HSE to go to Argos to buy a particular stroller for her son who needs a wheelchair. That is not acceptable. I am pleased to have an opportunity to raise some of these issues. The clock is ticking, and I want to give my colleagues time. I commend the motion.

8:35 pm

Photo of Pa DalyPa Daly (Kerry, Sinn Fein)
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I also congratulate Deputy Tully on all her work in bringing this motion forward. I want to raise two issues. The first is an urgent matter regarding the lump-sum payments arising out of the budget. It is my understanding that those in receipt of the partial capacity benefit will not receive the lump sum of €500, which has been announced for carers, those with invalidity pensions and disability allowances. This is very unfair, given that the people in receipt of this benefit are in many cases, by definition, moderately, severely or profoundly restricted. It makes no sense given that people in receipt of carer's support grant or disability allowance are able to work and will get the lump sum, as will families on the working family payment, but it appears that those on partial capacity benefit will not be able to claim the working family payment. This is a very vulnerable cohort, and, according to contacts within the Department, they seem to be losing out. This matter must be resolved as soon as possible.

The other issue I would like to raise is the case of Alexis O'Mahony from Killarney. I have raised it here previously. This is my third or fourth time raising it. Alexis O'Mahony is a six-year old girl who lives in Killarney. She has a number of conditions and injuries. She needs constant care from her family, which includes constant turning and daily washing to avoid bed sores. This takes a tremendous physical toll on her family. A ceiling hoist would be of great assistance to the family. They applied for the grant from the local authority. However, nothing has happened, other than the Department's fiddling. The Government's policy changed and while the structural works needed for the hoist are covered by the local authority, the equipment for the ceiling track hoist is not covered. It is a matter of dispute as to who exactly is responsible for the funding and providing the equipment between the Department of Health and the Department of Housing, Local Government and Heritage. I do not care whose responsibility it is, but someone must sort this out as soon as possible. The budget has been given to those who need it the most, but it is not happening with Alexis O'Mahony. The family has been repeatedly in contact with the Department, yet no resolution is forthcoming. I have raised the matter four times. I ask the Minister to intervene and sort the matter out.

Photo of Mark WardMark Ward (Dublin Mid West, Sinn Fein)
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I want to start by talking about the cost of disability. Enormous extra expenses are faced by people with disabilities that are not covered by social welfare payments. Not all people with disabilities are on social welfare. Many people with disabilities work. People with disabilities are often at a higher risk of poverty.

I can testify, as a person and a worker with a disability who has lived experience, that many of the barriers one faces as a person with a disability are really challenging. The marginal increases for disabled people introduced in budget 2022 were wiped out this year by inflation. Additional expenses for living with a disability are not recognised by the State, which means that people with disabilities are often caught in a poverty trap.

The lack of public services for children with disabilities also pushes people into poverty. In my area in Dublin Mid-West, there are significant waiting lists for children trying to get occupational therapy, speech and language therapy, psychology and dietetics. We heard from the Quarryvale Family Resource Centre at the Joint Committee on Children, Equality, Disability, Integration and Youth, which operates a food bank in my area. We were told about parents accessing the food bank because they are paying privately for services that the State should be providing for their children. That is not acceptable.

Budget 2023 failed to resource and fund disability support services. Sinn Féin outlined a funding strategy to meet the needs of people with disabilities in our alternative budget, not just for next year but right up to 2032. This would allow disability groups to plan ahead strategically and people with disabilities could feel assured of the services. We cannot put a price on that. Sinn Féin would have invested an additional €153 million in disability services compared with the Government's paltry €29 million. Early intervention is key. We have an unacceptable situation in Dublin Mid-West whereby there are not any public health nurses to carry out developmental checks on infants. We will see more children falling through the cracks if issues are not spotted earlier.

In the brief time remaining I also wish to mention the Clondalkin Autism Parents Support Network, which is campaigning and fighting for basic school supports for their children. These parents are exhausted from fighting a system that is betraying their children and preventing them reaching their full potential. They should not have to fight but fight they must. They must fight until there is a complete overhaul of the system and also of the current Government.

Photo of Sorca ClarkeSorca Clarke (Longford-Westmeath, Sinn Fein)
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Along with my colleagues, I welcome the opportunity to speak on this motion this evening. I too congratulate and praise Deputy Tully on her tireless work in the area of disability services. The statistics and the lives behind the figures for disability services are truly stark. Some 17,000 children are waiting on initial contact with a children's disability network team. Some 2,500 are overdue for an assessment of needs. Accompanying that is an archaic IT system, which means none of us knows the true extent of the issue. When the parents, who are desperate, reach out, they are met with an endlessly ringing phone, one that is never answered. There is no engagement. There is not even any response to written correspondence. When the travel arrangements for adults with disabilities are simply no longer available, families and service users are left distraught.

Budget 2023 was the opportunity for the Government to prove that not only had it heard what those with disabilities and their supporters had said but that it had truly listened and taken it on board. That is a lost opportunity for which I fear those with disabilities will ultimately pay the price.

I will not go back over what my colleagues have said about the lack of investment, the failure to plan or the lack of multi-annual budgets, but I will make one ask of the Minister of State, Deputy Rabbitte, this evening. She previously engaged with a group called Lough Ree Access for All. It is a very good group and the Minister of State knows what it is capable of. It is a truly inspiring group. Deputy Kerrane and I visited it recently, along with others, and we saw the amazing work the group has done to ensure that those with disabilities have access to the waterway. The changing room is now open. However, I will ask the Minister of State to engage with the group again because Pobal has set the bar so high for one of its grant applications that it simply does not make sense. The group is also seeking additional funding in order to safely get wheelchair users onto the remarkable boat it has sourced. It is vital that this equipment is provided, as it opens up opportunities to people, many of whom have no day-to-day interaction with people outside of their family and carers. It is a unique opportunity. I urge the Minister of State to make contact with them, reach out to them and offer them support, as she has done previously. I give credit to her for that. The group is incredibly grateful for it, but it is in a very difficult position, in particular with the rising cost of energy and fuel.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Deputies for tabling this important motion this evening. I thank the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, for being present to receive it with me.

The motion before the House tonight addresses many issues regarding people with disabilities. However, I want to be clear from the outset, as Minister of State with responsibility for disability, I am completely dedicated to improving the lives of people with disabilities in Ireland, and to strengthening vital specialist disability services, from the very young to the very old, regardless of location or disability, visible or invisible. I have had the privilege of being in this role for two years. I do not for a moment underestimate the challenges faced by people with disabilities in Ireland, or the pressures that our services can face. It is in recognition of these challenges that just two weeks ago the Government announced the largest ever budget allocation to specialist disability services of more than €2.4 billion. The increase in the disability budget for 2023 follows significant additional funding for disability services in 2021 and 2022.

It marks a real consolidation in the investment in the sector and is testament to the Government's commitment to boosting and sustaining funding to disability services.

I will now share details of a combined package of €177 million in additional funding to specialist disability services for 2023. A total of €109 million is being provided to support existing levels of service, ELS, which takes into account demographics, changing need and pay awards, as well as some funding towards non-pay inflation factors, with additionalities for funding new developments including a progressing disability services, PDS, programme team for ChildVision, a new acute neurology unit, a community neurology unit, social farming and the Cappagh specialist children's team. Once-off funding is being provided for costs associated with activity earlier during Covid amounting to €39 million, of which €11.5 million will be spent specifically on assessments of needs.

As part of budget 2023, an inflation support fund of €100 million will be made available to support community-based voluntary organisations, including those providing disability services, an essential pillar in the provision of health services that will receive €65 million. This fund is being made available in recognition of the challenges faced by the sector in delivering and maintaining key health and social care services against a backdrop of increased inflationary pressures affecting energy, heating and related costs. The fund will be administered by the HSE and the details of this will be finalised in the coming weeks.

To respond to Deputy Funchion in regard to transport, there are 39 section 39 providers in community healthcare organisation, CHO, 5, where transport costs constitute a huge issue for it. They will receive a portion of their block grant, which they can dedicate directly to supporting transport. The cost is something in the region of €230,000 for the various organisations.

Many of those in the disability sector will be aware the disability capacity review has identified a significant level of under-provision of residential care places, with changing demographics adding to the numbers requiring residential care. As of August, there were 8,192 residential places for people with a disability, with approximately 90 service providers nationwide. To the end of August 2022, 60 new emergency residential places had been developed together, with 17 new intensive support packages.

The Government recognises how important respite can be for relieving pressure and improving quality of life for families. In 2020, the funding allocated amounted to approximately €70 million, representing around 3% of the total budget. In 2021, I secured €5 million and we built in an additional 10,400 respite nights. In 2022, in the three specialist centres, we have built in 4,032 nights, while for the nine remaining houses, there have been 9,408 nights.

The Government is committed to supporting people with disabilities to maximise their capacity to live independent lives. To that end, the HSE provides a range of assisted living services including personal assistant, PA, and home support services, with funding in place to enable the delivery of high-quality PA and home support services to circa 10,000 people with disabilities, including 1.7 million PA hours and more than 3.12 million home support hours.

As was mentioned by other Deputies in regard to the children’s disability network teams, over recent years 475 new posts have been added, along with the 133 that will be added this year, to address the return of therapists to special schools. To respond to Deputy Cullinane, I reiterate that the comprehensive PDS national team development programme has been provided to the CDNTs and has cascaded to all team members. This programme was designed to support the establishment of the new CDNTs and to support the implementation of the new model of service, which will support staff retention. Options regarding the recruitment of staff such as speech and language therapists, occupational therapists, OTs, and physiotherapists include targeted national recruitment for the CDNTs, high-profile international campaigns, targeted international recruitment for the CDNTs with the possibility of a relocation allowance, a sponsorship programme, an apprenticeship programme for therapy grades, the employment of graduates as therapy assistants as they await their CORU registration and an expansion of therapy assistance in the system with the HSE supporting individuals to return to education to qualify as therapists. The HSE has approved an attractive and competitive relocation package for the international recruitment of all therapies. The relocation package includes allowances payable to candidates to meet the initial costs of relocating, such as accommodation and flight allowances for all EU and UK candidates and non-EU candidates.

It is important for anyone listening to this debate to understand what is happening with therapists going back into schools. The reassigning of existing HSE staff to fill one third of posts happened in September, while a further one third is to happen by the end of October. In parallel with the first two phases, a number of initiatives will be commenced immediately, including a high-profile international recruitment campaign, as I outlined. The implementation is being monitored, with regular communication between the relevant stakeholders at a local and national level. Regrettably, the Fórsa trade union, which represents personnel involved, has issued an instruction of non-co-operation to its members regarding the reinstatement process. In that regard, the union has advised its members not to co-operate with the reassignment of staff to provide on-site health and social care supports to special schools. This instruction has impacted significantly on the HSE's capacity to progress the phase as it intends. Representatives of the HSE met Fórsa on 23 September to discuss this matter, and during the meeting the Fórsa representatives raised a number of issues and concerns with regard to the programme and the impact it has having. What I do not understand is that last year, I was able to reinstate 65 therapists to special schools and Fórsa had no issue; now I am reinstating 133 and it has a huge issue.

Ireland ratified the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, on 20 March 2018 and this marked an important milestone in a process to strengthen the rights of people with disabilities. The Government remains wholeheartedly committed to continually advancing the rights and obligations it has recognised and agreed to be bound by in ratifying the UNCRPD. My colleague the Minister, Deputy O'Gorman, will be further in addressing this issue later in the debate.

I believe I have addressed Deputy Funchion's questions. In regard to aids and appliances, which one of her party colleagues raised, if anybody is using an aid or appliance that is sitting on the resource allocation group, RAG, system, they should let me know. I should not know what a RAG system is, but it is where the aid or appliance has not been approved locally by the HSE. Deputy Cullinane will know what I am talking about. I say this to all my colleagues throughout the area. No child's aids or appliances should sit unapproved on a RAG system. If that is any Deputy's experience, I ask him or her to let me know. We just recently had the case of Eva in Cork and a car seat, which has now been approved. There was also the case of a child's bath. Those types of equipment should be approved. Let us be clear about this. These are aids and appliances needed by children and that support needs to happen.

I will take up the case of Alexis O'Mahony. In regard to Lough Ree Access for All, I was successful in funding the group €60,000 already but I will engage with it to ensure everyone will have the same access to leisure opportunities as the rest of us in being able to get into the water. I would be delighted to engage in that regard.

Not a month goes by in which I am not held to account in either House regarding the progress made, and not a day goes by in which I do not engage with all elements of the Opposition to ensure they are totally aware of where the funding is being spent and how it is being directed. I recognise the significant challenges, the stress and the strain and the frustration that parents and families are under but, as Minister of State within the Department, I am trying to be ambitious and think outside the box, looking at ChildVision, the neurology units and what we can do in Cappagh to ensure we have specialist teams to support families regardless of where they live.

8:45 pm

Photo of Claire KerraneClaire Kerrane (Roscommon-Galway, Sinn Fein)
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I am sharing time with my party colleagues.

One of the greatest challenges we face, as I am sure we would all agree, relates to the fact that children who need additional support are being neglected in the current system. Far too many of them are not getting the support they need when they need it and they are instead being passed from one waiting list to another. They wait for an assessment, for initial therapy and then for further therapy, and months and months pass by. It is those children and their parents who suffer. It is particularly heartbreaking for parents and we have all dealt with those who are affected. A child being left to wait on any list impacts on every part of their life, including their mental health, their well-being, their life at home and at school, their development at school, their education and their own friend groups.

The reconfiguration that has taken place in recent months has been really difficult for parents. I spoke to certain parents who were getting some therapy for their children. In County Roscommon, for example, they would have been getting it through the Brothers of Charity and now, since the reconfiguration, they are getting none at all. Just like anyone on a waiting list when it comes to health, the longer a person waits, the more he or she regresses and the greater impact it has on development, particularly when it is a child.

As has been said this evening, vacancies remain in children's disability network teams across the State, including in counties Roscommon and Galway, meaning children will continue to wait. We know that across CHO 2, which includes counties Mayo, Roscommon and Galway, 1,675 children are waiting for initial contact from the disability network team. The majority of these children have been waiting between four and 12 months. As has been said, we have no data regarding the breakdown on the support these children are waiting for because the computer system in place is not fit for purpose. When we speak about the waiting lists for children with disabilities with regard to the new network teams, we must also remember that these are on top of huge waiting lists and long waiting times under primary care. To name a few, 715 children are waiting for psychology treatment in counties Roscommon and Galway, 507 are waiting for occupational therapy, 758 are waiting for assessment for physical therapy and 1,341 are waiting for an initial assessment for speech and language therapy. We have so much to do with regard to disability services. No-one is taking away from the work that is being done but we have a massive challenge to overcome with regard to children and their services.

8:55 pm

Photo of Patricia RyanPatricia Ryan (Kildare South, Sinn Fein)
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The Government continues to fail people with different abilities. The recent budget is the latest step along that road. The lack of respect shown for people seeking to access services or any kind of supports is very poor. I often say in this Chamber that some Deputies must have nobody belonging to them seeking to access services or get help for loved ones with different abilities because if they did, the system would have been fixed years ago. Instead, we have a regime of red tape and silly rules to make things more difficult for them and their families.

The mother of a young chap came to my office last week. Her child has a rare genetic condition that requires around-the-clock care. It took months to transition the child from a buggy to a wheelchair due to the backlogs and bureaucracy. The child's condition has now evolved in the months since to include seizures, which means that the wheelchair is no longer ideal for this child. However, because the child is now over six years old, they have been told he cannot return to the buggy, which would obviously allow him to lie down, if necessary, when he has the seizures. Because of this rule in a book somewhere, the child is not receiving the right equipment. I have written to the Minister of State about this. I ask her now to commit to helping this child and his family. All they are looking for are fewer rigid rules and more of a caring attitude. This family has faced a constant battle since their child was born to get a diagnosis, assistance with his care, a school place and transport to that school, respite care and access to basic supports. I commend the family and thousands of others like them on the fight they endured to make the lives of their children better, which is all any of us want. I know the Minister of State is doing her best on that but it should not have to be this way. Can we please do something to help this family? Implementing the recommendations of the Disability Capacity Review to 2032 report would make a huge difference and show the families that we care. I commend Deputy Tully on all her hard work.

Photo of Dessie EllisDessie Ellis (Dublin North West, Sinn Fein)
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One of the most prevailing issues regarding the provision of disability services is the extraordinarily long waiting lists for such services. In my constituency of Dublin North-West, a high number of children and young people with autism and other special needs and disabilities are on lengthy waiting lists for assessment and support services.

I recently had a constituent in my clinic who was waiting to get a child assessed for disability. This person was told that the child will have to wait for another three years for assessment. Figures issued in August of this year also show that children are waiting for primary care psychology. CHO 9, which also includes my constituency of Dublin North-West, had a maximum wait of more than four years for such services. It is critical that children get the supports they need at an early age as this is the time that such supports will make the biggest difference for the child as he or she gets older

These long delays in assessment are not acceptable. They are frustrating for parents trying to access services. Parents are despairing and feel that they and their children are being neglected. Their despair is not helped by the fact that a huge number of staff positions remain unfilled. Many families also complain of a lack of clarity with regard to plans and timeframes for progressing disability services for children and the processes to access such services are often over-complex. Parents of children with disabilities must become advocates to secure the supports they need for their children in a system that is, at best, difficult to navigate. Many of these children have complex needs that require specialised and intensive supports. They are struggling to access them now.

I am a member of the Joint Committee on Disability Matters, which today launched a report on the participation of people with disabilities in political, cultural, community and public life. Ireland signed up to the United Convention on the Rights of Persons with Disabilities and it is time we implemented it. That requires real investment and a will to follow through on commitments. I hope the Minister of State will be able to see the shortfalls in the services that have been identified in this report. All the different advocates were there and I think it has been a very good exercise,

Photo of Thomas GouldThomas Gould (Cork North Central, Sinn Fein)
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In County Cork, 2,000 children are waiting for a first appointment with a CDNT. Children and adults with disabilities deserve better. Parents are being offered online courses and videos. These are not therapies nor are they a substitute for therapy. They can be important for parents when the therapies are given as a support, but not instead of them.

CDNTs have a huge amount of staff shortages including nurses, occupational therapists, psychologists, physiotherapists, speech and language therapists, social workers and others. The shortage of professional staff is unbelievable. CDNTs are supposed to provide help and support for children with complex needs and their families. Children are struggling. I know the Minister of State knows this and I know she is trying. However, the problem is that we have had 11 years of underfunding and under-resourcing and now the Minister of State is trying to fix a decade of abandonment. It needs to be fixed, however. We have 1,584 children in County Cork waiting for more than a year. How can the Government think this is okay? How can it think this is acceptable?

The Government talks about timely access. We hear phrases like "early intervention". However, if children do not get the early intervention, parents know their children are regressing and will not have the quality of life they could and should have because the State is failing them. I talk to parents who are heartbroken and who then get frustrated and angry. Why must parents fight for services for their children that every child should have access to? The Minister of State will be aware of Families Unite for Services and Support, FUSS. I have heard parents tell stories of waiting years for services or supports. I listened to children speak at these rallies and protests about how they are being failed. Some parents and people are lucky enough to have the resources to go for these therapies privately. How heartbreaking it is if a parent cannot access these services because the State is failing his or her child and he or she does not have the money to get them. I implore the Minister of State. I know her heart is in the right place but we must deliver now.

Photo of Duncan SmithDuncan Smith (Dublin Fingal, Labour)
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I thank Deputy Tully and Sinn Féin for bringing this motion forward this evening. I will probably jump around a bit based on the Minister of State's statement. One thing that leaped out for me, which I did not see early enough but I am glad to see now, is her ongoing negotiations with the Minister, Deputy Harris, about the training and long-term supply of staff for whatever grades are needed.

For a long time I have been asking that this should be one of the primary focuses of the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris, not just in disability services but across the health service in planning the training and delivery of all the staff and grades we need for the services we need. I could spend time saying it should have happened a year ago and all the rest, which I am doing, but I commend the fact that this is up and running. Hopefully that will start to bear real fruit and we can be communicated with on it.

There are gaps in our knowledge as to where the recruitment and retention crisis is failing. We are hearing that workers in certain grades are departing our shores to go for higher paid jobs and we are hearing that they are moving out of the cities, including Dublin, to go down the country because they cannot afford to live in Dublin and there are varying degrees of truth in all of that. However, we do not know how many people we are training and then retaining in our services one, three, five or ten years later. That is vitally important because the CDNT issue is so big. The 28% figure we have for vacancies not filled feels like it is higher in respect of service delivery and in the lack of service delivery. In my experience, service users have been devolved from existing services - which may not have been amazing or all they needed - out to a community service that is non-existent. That is a reality and that is where the CDNT system is failing those families.

I have had one family from the south of the country onto me who have a young boy with Down’s syndrome and who is non-verbal. They are looking for speech and language therapy and the child is on the cusp of having an autism diagnosis as well. To compound this, as he has a younger sibling who also has been diagnosed with autism, there are complex and multiple challenges in that family. The services that they are being offered are once-off, over the phone or online and then that is it. My concern is how is that being fed upward? Is it being fed upward in the system as if they have received the service and that family has had its box ticked? It probably has but we know they have not received a service and those parents are trying to hold down full-time jobs, run a household, pay for private care and be full-time activists on behalf of their children and that is just not good enough. That is the CDNT system failing. I have other similar examples, including in my constituency but we are talking about families with more than one child with complex needs that need the services and that are being let down, which is just not good enough.

Where is the action plan for the disability capacity review? The Minister of State looked at me there but we need to know where it is and when it will be delivered. The last time we debated this in the House was during another Private Members' motion from the Social Democrats on 6 July. We were hoping against hope that the action plan would be published before the recess. We then hoped that when we came back after the recess it would be published before the budget and it was not. We are into October now and things have gone unerringly quiet on that front. Will we see it before Christmas? Will we see it at all? Will we see the detail of it? That is what we need to be able to mark the Government's progress and to mark whether we will be able to tackle the need in the disability service. I have spoken about that at length before and I do not need to remake that case but we are 15 months on from the disability capacity review. The Government's disability capacity review was published and we still do not have the action plan for it. We have action plans for other things, including the climate action plan, and people and families with disabilities feel that in the overall scheme of things it is a modest thing to ask for an action plan for the disability capacity review.

On the cost of living, while there were some one-off payments announced in the budget, the cost-of-living crisis that we have all been discussing for a year has been discussed as a new phenomenon in Ireland. There has been a permanent cost-of-living crisis for people with disabilities. Again, that is not just me or anyone else saying that; that is the independent cost of disability in Ireland report, which was published last year. It shows that on average there is an extra cost of €9,500 to €11,500 per year for people with disabilities. That extra cost goes on food, heat, transport and all the things we all need. This was proven before this cost-of-living crisis became a mainstream debate and before the war on Ukraine happened. This was already a chronic issue for people with disabilities at that time.

What that report highlights is that even in benign times, the cost-of-living crisis is real for people with disabilities. When it exists as it does now it becomes manifestly worse for people with disabilities. We are trying to manage our budgets to be able to afford a weekly shop for families or households that do not have complex nutritional needs, do not have to buy vitamins or medications, do not have extra transport needs in order to get to hospital or medical appointment or therapies if they have them and need not keep machinery or aids on 24-7 or for many hours during the day. The louder we talk about a cost-of-living crisis in the mainstream debate the more diminished the cost-of-living crisis for people with disabilities becomes because it gets pushed further down in the debate. It is always the Cinderella, not only of the health service, but of political debate. That is why I welcome this motion and the opportunity to debate it.

I have asked about the disability capacity plan. The Minister of State mentioned Fórsa in her contribution and what it has asked its members to do. That was not in the Minister of State's written statement or at least I could not see it. I will go back and check what was said but I would appreciate it if the Minister of State's office could circulate something on that so I could have a better understanding in order to be able to respond appropriately to it. As I was speaking I was trying to find reference to it in the copy of her speech and I could not find it. What the Minister of State was saying seemed serious and worthy of more investigation and study.

I will leave it at that. I have made my points clearly. The motion is strong and it is another motion on this issue. The Opposition is building on previous motions and the calls are consistent and clear. We become more and more disappointed as we reach Dáil recesses and budgets and we are not seeing what we need to see in the provision of services for people with disabilities.

9:05 pm

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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I want to start by thanking Deputy Tully for enabling this important discussion. Disabled people and their families only ever want what they are entitled to. In briefings by disabled persons' organisations, in meetings with distressed and frustrated parents and in all the reports from organisations, they say they just need proper services. They are not looking for anything exorbitant of for special treatment; they are just looking for what they deserve and are fighting for their rights.

Disabled people have the right to live as independent a life as possible, to suitable housing, to accessible public transport and to employment. Children have the right to be seen by medical professionals and therapists in a timely manner and they have the right to education. These are all rights; the fundamental services people are entitled to. However, we all know that every day, these rights are breached. Obstacles to access work, delays in seeing a clinical therapist and inaccessible public transport are breaches. These breaches are so commonplace and everyday that they are not even noted.

It is only after repeated failures and frustrations that individuals and families contact their public representatives and it is only egregious cases that make it into the newspapers. This is wrong on every level and people should not have to go these lengths. Disabled people and their families should not have to share intimate details to get services. Unfortunately the media has a particular role to play here as stories around disability services only make it to the headlines when someone is willing to, or is convinced, to tell their personal story. Recently, Catherine Gallagher shared her details nationally to retain and access supports for studying her PhD. She spoke at the Committee on Disability Matters about disabled people often not having the privilege of living with privacy, dignity and discretion. Until our systems are designed and operate off a rights-based approach, people like Catherine will continue to have to jump through hoops and go to the newspapers. The failure to provide people with services has knock-on effects impacting on: their quality of life; their potential throughout life; their family; and how society understands disability.

The key point underlying this motion is that disability services are a right. They are not optional services or some kind of charity; they are the basic support the State is obliged to provide to individuals.

The progressing disability services, PDS, programme is one of the key examples of this larger issue. It is currently a failure, with overwhelming evidence it is failing children and families, breaching their rights and not providing therapies when they are most needed and most effective. We are all aware of individual cases that represent the severe lack of services. Down Syndrome Ireland, AsIAm, Inclusion Ireland and others have produced comprehensive reports showing the overall situation, from glaring regional variations to no therapists for more than a year and a complete absence of any communication. Families Unite for Services and Support, FUSS, Ireland is doing incredible work highlighting how children and young adults with disabilities in Ireland face long waiting lists and, in many cases, a lack of supports. It holds regular protests and is active on social media, which it should not have to be. Each of its protests and meetings symbolises the failure of our current system.

The lack of communication and accountability is a major concern. Family forums were supposed to be an important pillar of the PDS programme. As families wait for many of the forums to be established, they have formed their own networks and have tried to engage proactively with disability services management in community healthcare organisations, CHOs. They have had very little engagement. It is, in essence, impossible to meet with management in CHO 4.

Children's disability network teams are not fully staffed. This is a self-perpetuating issue as under-resourced teams lead to overstretched staff who feel they are not providing the care they want to and are being ethically compromised by the limited time they can give children. They then migrate to other countries or go into private practice just to be able to do the jobs they are supposed to do. Related to this is how student therapists are treated, with many receiving no remuneration for their internship or placement work. If we want to retain these professionals as graduates, they must be respected from day one.

Another group that demonstrates the desperate state of disability services is the more than 1,300 people aged under 65 forced into nursing homes because the State cannot support them in community settings. These are individuals with certain clinical needs who are capable, if supported, of living independently. Instead, they are being institutionalised in nursing homes, spending their days with people 30 or 40 years older and knowing that under current rates of decongregation, they will never leave those homes. The Ombudsman's report last year, entitled Wasted Lives: Time for a better future for younger people in nursing homes, charts the scale and impact of this issue. In his foreword, the then Ombudsman, Peter Tyndall, wrote:

Once you start unpicking the issues, it is clear that the systems are not in place to support people with disabilities. There is no system to ensure that every person has a key worker to enable them to access services. There is no consistent process for establishing people's needs and preferences. As a consequence, there is no way of identifying overall requirements, and no planning to address them.

Clinical evidence and findings from HIQA show life is better for people not living in larger settings. We need clear plans to move these 1,300-plus people out of nursing homes.

Another vital service is personal assistance. Along with supported independent living, it is a major tool in helping individuals to realise their rights. There is a significant gap in demand versus supply in personal assistance services. This has knock-on effects as a lack of access is a barrier to independent living, education and employment. Independent Living Movement Ireland, ILMI, describes how the process to apply for personal assistance can be daunting and complicated and many disabled people are told they cannot get the hours they need. Increased funding for personal assistance would be transformative for individuals and their families but it also would be an economic and social investment as it would enable whole cohorts of people to enter education and employment and live in their community. I recently attended the awards ceremony of the National Learning Network in Bantry, which demonstrated that providing the right supports, such as training, transport and work placements, results in incredible success. Last year, 92% of its students progressed either to part-time or full-time employment or further education and training. That is a remarkable rate that rivals those of our best universities.

The Convention on the Rights of Persons with Disabilities, CRPD, clearly outlines the importance of mechanisms for disabled people to shape policy that impacts on their lives. Our legislative and consultative processes are hostile to participation by the larger public, never mind individuals with additional needs or overstretched families. Improvements in services must be guided by the people directly affected. There is a glaring need for more investment in disabled people's organisations, DPOs, and advocacy services. We have a small network of DPOs that are helping to transform how we understand disability and policy. However, they have limited capacities and require proper funding streams from the Government that guarantee their operations and independence. The national advocacy service, NAS, for people with disabilities, funded through the citizens information network, is a vital service for helping to represent the rights and preferences of disabled people. It is vastly oversubscribed, however, which needs to be recognised by both the Government and the Citizens Information Board. We are obliged to provide individuals and groups with the tools to advocate for themselves and influence decision-making.

The motion rightly highlights the continued failure of the Government to publish the disability capacity review action plan. My motion on the cost of disability back in early July included a call for the publishing of that report. The Minister of State, Deputy Rabbitte, informed the Dáil at the time that she had signed off on the report and it was with the Minister, Deputy Stephen Donnelly. She assured us we were "within weeks of having it published". Months later, after the budget, disabled people are still waiting for the action plan. The disability capacity review was published in July 2021. Now, in October 2022, there is still no sign of the action plan. How many more motions will it take for it to be published?

9:15 pm

Photo of Bríd SmithBríd Smith (Dublin South Central, People Before Profit Alliance)
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I move amendment No. 1:

A.

To insert the following after "training and development funding for Disabled Persons Organisations (DPOs)": "- people with disabilities have faced a cost-of-living crisis for decades, and the 2021 Central Statistics Office Survey on Income and Living Conditions data shows increases in disability poverty across all indicators, at a time when the national averages decreased; and

- people with disabilities face poverty rates three to five times higher than the national average, and the at-risk of poverty rate for those not at work due to a long-standing health condition (disability) for 2021 was 39.1 per cent;" B.

To insert the following after "ratify the Optional Protocol to the UNCRPD": "- increase the Disability Allowance, the Blind Pension and the Invalidity Pension to €350 per week;

- increase the Domiciliary Care Allowance to €350 per month; and

- increase the Carer's Support Grant (formerly Respite Care Grant) from €1,850 to €2,500".

I am supposed to be sharing time with Deputy Barry but he is not in the Chamber.

I thank Deputy Tully for putting this motion before the House and giving us a chance to speak up yet again for people with disabilities. In the past few years, it has been the people living with disabilities who have been the most vocal and visible on these issues, much more so than politicians and others who claim to advocate for them. I watch with huge joy, interest and hope for the future as young people like Sophia Mulvany take control of their lives and advocate strongly for what needs to be done for people with disabilities.

I refer to the press release issued last May by FUSS Ireland before a huge protest it held. It stated:

Every day, we watch our children regress. We watch them miss out on school places. They sit in pain in equipment that is too small or unsuitable. We watch them disappear from their communities and their families waiting for a lifeline that they are constantly told is coming.

Some people might think that is too stark but it is not. It certainly is not too stark for those who live with this reality. As FUSS Ireland noted, more than 100,000 children can languish on waiting lists across the country. Inclusion Ireland's report, Progressing Disability Services for Children and Young People, found 85% waited a year or more to access disability services.

This was echoed by Down Syndrome Ireland, in a report on the lack of services published in 2022, which found an average of 44% of children in all community healthcare organisations had no therapy of any kind in the previous 12 months. That figure rose to a staggering 95% when it came to psychological support services. I acknowledge that we were coming out of Covid in 2021 but, nevertheless, the statistics are staggering and will have a real impact on the lives of those people.

The Sinn Féin motion is not just about children. Hopefully, all going well and with a bit more input from the State and improvement to these services, these children will live long enough to become adults and enjoy an independent life. That is why, in its motion, Sinn Féin has rightly tried to address how the budget has failed to resource support services to meet not just the current needs of children, but also the current and future needs of adults. I think a lot might go under the radar here. My local community care centre in Cherry Orchard, which is a fine centre that is well-resourced, gets referrals from the National Rehabilitation Hospital in Dún Laoghaire. For example, one man that I am representing was referred for an electric wheelchair to be made available and the centre was to look after it. He was told last May that he would be waiting at least until next May to access that wheelchair because of a lack of staff. There is a serious lack of staffing across these services. It impacts not just children, but also adults who are trying to navigate life as they do their best to live with what can be terrible injuries and disabilities.

I note the Minister of State spoke about the day services that are a vital support for adults to help them participate in life in their communities. I have been in touch with the Minister of State about a particular case, and the situation has not changed. I refer to the case of a severely autistic young man, who needs support to be able to travel to a very good day centre that he attends. He gets no support from the State because he is over 18. He is unable to navigate public transport because of his epilepsy and the severity of his autism, so his mam, who is a fully trained nurse and a special needs assistant, cannot work because she drives him to access the services. She is isolated. She wants to participate fully in society, and we need her. We are short of workers like her, but she cannot work because the State will not provide any support - not a penny - to transport her son to the training services he needs daily. That is one example. What that tells me is that our services are too structured. When I tried to get to the bottom of the issue it was sent from the Department of Transport to the Department of Children, Equality, Disability, Integration and Youth and the Department of Health. It went all over the houses before someone finally came back and said "No can do". Why are we saying that to people, when it is not rocket science to give them a small bit of support to help them live a decent, full life and to use their talents in the health and education sectors where we need them?

I want to briefly talk about the optional protocol to the UNCRPD. I must ask why the UN made this protocol optional in the first place. However, it is optional. When UN representatives speak to it, as Mr. Markus Schefer did at a the meeting of the Joint Oireachtas Committee on Disability Matters held to discuss the rights of persons with disabilities in May 2021, they are quite hard on countries that have not signed up to the optional protocol. Mr. Schefer said:

The optional protocol and the convention together are one whole. That is why the [UN] committee continuously urges and recommends member states to ratify the optional protocol... It is important that, even from the international level, we give people who think their rights have been violated under the convention a recourse outside of their country...

According to Mr. Schefer, not ratifying the protocol has "legal and political" impacts for those countries that take that decision. He stated: "If you do not ratify the optional protocol, you will leave out the Judiciary and, as in all areas of law, if you leave out the Judiciary something is lacking and implementation will suffer." He went on to talk about the symbolic consequence of not ratifying the protocol, which "tells the world community" that we, in this country, are "not comfortable enough" with what weare doing "to have an external body in a court-like procedure examine whether ... internal actions, as they transform to individuals, are in conformity with the CRPD." There is a problem here. I am aware that the Minister for Children, Equality, Disability, Integration and Youth is going to address the optional protocol later on. The UN should never have made the protocol optional, but now that it is optional, it is a very bad optic for Ireland in front of the world community, never mind the citizens of its own country, that it is failing on a daily basis.

Lastly, I will speak about the People Before Profit-Solidarity amendment to the motion. We have tabled the amendment because the first paragraph of the Sinn Féin motion, which, as I said, we strongly welcome, states that "Budget 2023 has failed to resource and fund disability support services and infrastructure that the Government itself has identified as essential to meet current and future unmet need for children and adults". We have put in this amendment to try to address that. Most of us have only been facing the cost-of-living crisis recently, whereas people with disabilities have been facing it for years. We want to add to the motion the following:

— people with disabilities have faced a cost-of-living crisis for decades, and the 2021 Central Statistics Office Survey on Income and Living Conditions data shows increases in disability poverty across all indicators, at a time when the national averages decreased; and

— people with disabilities face poverty rates three to five times higher than the national average, and the at-risk of poverty rate for those not at work due to a long-standing health condition (disability) for 2021 was 39.1 per cent;

We also call on the Minister for Health to:

— increase the Disability Allowance, the Blind Pension and the Invalidity Pension to €350 per week;

— increase the Domiciliary Care Allowance to €350 per month; and

— increase the Carer's Support Grant (formerly Respite Care Grant) from €1,850 to €2,500.

This is not about point-scoring; it is to point out that there are realities of poverty in this country. There are cost-of-living struggles that we all recognise, but people with disabilities face them to a much greater extent. We need to address that. We recognised it during the Covid lockdowns, when everyone was put on a payment of €350 a week. Now, all of a sudden, how come they can live on much less, particularly when they have to meet the challenges of paying more for transport, clothing, supports and care? That cannot be ignored.

9:25 pm

Photo of Seán CanneySeán Canney (Galway East, Independent)
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I thank Deputy Tully for tabling this motion. It is important to state that the Joint Oireachtas Committee on Disability Matters has worked hard on many issues over the last two and a half years. Hopefully, we will bring forward some supports for people with disabilities, in conjunction with the Government, which is what it is all about.

When I meet parents in my constituency who have been told that their child has a disability, they end up trying to cope with that fact first of all, and then they try to come to terms with how they are going to get help for their child. One of the key elements that always seems to be missing is that they do not know where to start or how to progress from one place to another. There is no key worker assigned to them and no plan is set out detailing where the services are. There are gaps in the services and parents are left in a fog a lot of the time, when they are also trying to cope with the fact that they have a child with a disability. This can wear families down because they are fighting every inch of the way to try to get something which is a right for their child who has a disability. People often tell me they cannot access speech and language therapists. I do not know what has gone wrong there, but there is a huge void in that particular service.

The other issue I worry about, when we talk about services, is that we are relying on section 39 organisations, such as Ability West, to provide them. We also rely heavily on the Irish Wheelchair Association. Yet we do not pay the people working in these section 39 organisations the same as we pay people working for the HSE. If we are going to provide equal opportunities and supports for people with disabilities, we need to ensure the people who are trying to help them are also paid accordingly.

Another issue I often come across is the fact there are young people in nursing homes long term because there is no other place to put them. It is an indictment of our society that we continue to allow that to happen in 2022.

Another issues that comes up, as the Minister and the Minister of State know, is that we have a broken transport support service for people with disabilities. The criteria for primary medical certificates are unfit for purpose. The members of the appeal board have resigned and, a year later, we are still talking about considering how to put a new appeal board in place. That is another matter about which we should hang our heads in shame. It is not right.

The Indecon report that was conducted and published in 2021 was based on living costs in 2019. It set out that a person living with a disability had additional costs that must be met by the State. There was a glimmer of recognition of those additional costs in this year's budget, apart from the cost-of-living agenda, and €500 was allocated for people with disabilities. However, that is a once-off payment. We must start by making that an annual payment and increasing it incrementally until we get to a level at which people are being supported properly.

In the past three months, I have met a good number of parents who have struggled to get school transport for their children with disabilities. I know of one school where four children were left without a service for three weeks because of the mayhem around school services. The situation has been rectified in the past week but it has caused a considerable amount of stress to parents. It is stress they do not need and should not have. It is stress that should never have been there. One thing we can learn from what happened with the school transport service is that before we come up with a great public relations stunt in the future, we must ensure it can work. We must think it through before we announce it.

Many reports have been done, but at the end of the day, we must ensure we deal with people who have disabilities in a way that is fair and reasonable. We must give them every chance to live as normal a life as possible. We have many things to do yet. A parent of an autistic boy said that instead of assessing a child as having a disability, we should look at the child and say he or she has different abilities. If we think like that, we will be much better off.

9:35 pm

Photo of Peter FitzpatrickPeter Fitzpatrick (Louth, Independent)
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Many constituents who come to my office raise serious issues about their children who may be autistic or have a disability and need assistance. In fairness, the Government has done a good enough job, especially in introducing investment in special needs education in schools. I welcome the provision for the employment of additional special education teachers and special needs assistants, SNAs, with the number of SNAs to go above 20,000 for the first time. It will definitely help families.

However, I would like to address the inconsistency that exists throughout the State in respect of both the availability and type of services that are accessible to disabled children and adults. I must highlight that there are significant service delays in this area, especially in therapeutic intervention.

Families of children with a dual diagnosis of autism and a moderate learning disability are in crisis in Louth and east Meath. I am aware of 15 families who have adolescent children with autism and a moderate learning disability who urgently require a psychiatric review but have been told by the HSE the service is unavailable as there are no psychiatrists on the HSE team. In addition to no psychiatrists being available, the only paediatrician available in Louth and east Meath is Dr. Maeve McCormack. Dr. McCormack only deals with children who are 16 years old or younger and there is currently a four- to five-month waiting list. Child and adolescent mental health services, CAMHS, will not see teenagers who have a dual diagnosis, and these adolescent children cannot be seen by the mental health team until they are 18 years old.

A common trait for children with autism who are transitioning into adolescence is high anxiety levels and obsessive-compulsive disorder, OCD, behaviours. As many of these adolescents are non-verbal, they display their anxiety and OCD through self-injurious behaviour, including hitting themselves with force, property destruction, poor sleep patterns and assaulting others. Many of these families live in constant fear of attack from their adolescent child. They live in houses that have been significantly damaged by their adolescent child. I know of one situation where an adolescent child has flooded the house by pulling the radiators off the walls and architrave from around doors. The same family have no door on their bathroom due to this destruction. In addition, many of these adolescent children have younger siblings who are also in danger of being hurt. This situation cannot continue any longer.

There are not enough home and respite services. In fact, respite services nearly ground to a halt during the pandemic. The same people are being affected repeatedly, and we wonder why people are struggling with their mental health. We must do everything we can to support them and their carers.

A constituent recently visited in my office in Louth to complain that, in all of Dundalk, only one taxi is kitted out for wheelchair access. Are our disabled constituents to stay at home? Transport solutions and mobility supports for those with a disability must be targeted immediately.

Grants of a maximum of €30,000 are available to assist people with a disability in carrying out necessary work to make a house more suitable for their needs, but there is not enough money to go around for all the applicants. I welcome these schemes but people with disabilities are vulnerable and we need to ensure this work is carried out as quickly as possible, especially coming into the winter. The criteria for these schemes need to be reassessed with a view to getting it done quicker. The grant is means tested and an assessment needs to be carried out by an occupational therapist. The issue is value for money, but trying to get an occupational therapist to examine many of these houses in my local authority in County Louth is nearly impossible, highlighting again the shortage in accessible intervention.

There are some cases in my constituency where people have acquired injuries and are now confined to a wheelchair. They are trying to adapt their homes to make them fit for independent living, and €30,000 will not cut the mustard in that situation. The number of people over the age of 65 is expected to reach 1.4 million by 2040. These grants are going to be increasingly important for the ageing population but also for families and carers of those with disabilities. We need to keep the pressure off the hospitals.

This upper limit on the housing adaptation grant has remained the same for 13 years. It is important to say the upper limit certainly does not reflect the increases in the costs. The Government must allocate additional resources to local authorities to manage these schemes, to provide the investment required for local authority housing stock and to increase the budget allocation to the Department of Housing, Local Government and Heritage. The Government should also ensure the grant scheme can meet the demand and reflect the increase in construction costs. More must be done to ensure grants are linked to the costs of the specific works as a percentage of costs and to allow discretion for people with disabilities to ensure the grants meet the individual needs of the disabled person to live independently.

The odds are stacked against those with a disability and our ageing population. The Government needs to enable local authorities to meet the costs involved, address inflation and ensure measures can be provided in a timely manner.

Photo of Michael CollinsMichael Collins (Cork South West, Independent)
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The shortage of respite services for children and adults with disabilities in west Cork is having an impact on carers who have had no break in recent years since the onset of the pandemic. Carers go through hell a lot of the time. The budget has let carers down. In what world should it be acceptable that someone who works and cares for another person should be means tested? After all, these people are doing a job. Surely anyone who does a job should get paid for it.

Families are forced to watch key milestones in their children's development pass without appropriate interventions due to waiting lists. There is a lack of supports in the most distressing cases, including for children and young people moving into full-time care and on an unplanned basis. Older family members are trapped in unsustainable caring roles in the community due to the lack of investment in planned supports. Many parents are forced to provide significant support into their 70s, 80s and beyond, with no visibility or security in planning for the future of their loved ones.

In west Cork, there is a shortage of long-term residential care, especially for adults with disabilities but also in some cases for children. There are long waiting lists for children needing autism spectrum disorder, ASD, psychological services. Parents of children who have finally got into special needs schools and have finally been given funding for transport are now being told the Department cannot provide the services to take the children to school. The Department is asking the parents to take their children to school and will pay them to do so.

Ireland's disability service providers are not fully funded for the services they provide. They were not even funded for the full cost of the reversal of the pay cuts imposed under the financial emergency measures in the public interest. Those same organisations are not funded for the cost of meeting HIQA standards. They are being hit by massive increases in insurance costs. Some service providers have had to cut services or lay people off. Others have had to decide not to go ahead with new much-needed services. This means people with disabilities are forced to wait longer for basic needs.

Most of these same charitable organisations are struggling to retain staff because they cannot compete with what the HSE pays its staff to do the same work. All these organisations are funded under section 39 of the Health Act 2004 and this is at the heart of the challenge they are meeting each day. It means that even though these charities are providing the same services as the HSE, they are not funded on a level of parity.

9:45 pm

Photo of Carol NolanCarol Nolan (Laois-Offaly, Independent)
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The lack of access to basic services for children with a disability is shameful and inexcusable. I am particularly struck by a reference to the employment vacancy rate across the children's disability network teams, which now stands at more than 28%, as well as the fact there are more than 17,000 children waiting for initial contact with a children's disability network team and 2,500 children whose assessments of need are already overdue. HSE services that deliver high levels of complex care to children and young adults with a disability in Laois-Offaly are experiencing a significant staff vacancy crisis. In a reply I received from the HSE, it was pointed out that the children's disability network team at the Riverside Centre in Tullamore has four full-time vacancies, while the children's disability network team serving Edenderry and Mountmellick has seven full-time staff vacancies. The highest level, however, was found to be in the Spraoi Centre on St. Fintan's campus in Portlaoise.

Many parents with children who require rapid disability interventions are in effect witnessing a collapse in services. In Laois-Offaly, this is on top of a crisis we have in respect of access to speech and language therapy and occupational therapy. It is simply appalling. We need urgent action in Laois-Offaly, which is one of the worst-affected regions in the State. The HSE has advised that there is a prioritisation and caseload management system in place that includes assessment and intervention pathways but my experience, and certainly the experience of the families I hear from in my constituency offices every day, is that this is not translating into practice. It shows that this system is not working. We need a fit-for-purpose system. That is why it is vital that we have a new primary care centre in Birr and that it becomes operational with the various therapies to ensure community access for all people with a disability, particularly children, where it is vital they are assessed in time and prevention measures put in place.

Photo of Mattie McGrathMattie McGrath (Tipperary, Independent)
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I, too, thank Sinn Féin for tabling this motion. I will say my few words on it. Carers have been abandoned, especially during the Covid pandemic but also since then. They expected something meaningful this year in that they would be linked to other extra payments. They did not get that linkage. They got their once-off payment but that will not bring them very far. The Indecon report said enough. It stated that people with disabilities, as we all know and did not need an Indecon report to tell us, have many extra costs. That should be acknowledged.

I do not know how the Minister can stand over this situation. I do not know how he can stand over an apartheid system within the HSE where section 39 workers are regarded as a different type of worker who can be treated any which way, when there is such money flowing around the HSE. When we have a person with a disability, that individual's capability, ability and what he or she is able to do should be looked at. A number of managers and assessors will come to meet them at significant cost, but a lot of it is pen-pushing. The caring places are so good, such as Scoil Aonghusa and Scoil Chormaic in Cashel. I salute the many national schools and secondary schools that have special rooms for children with autism and everything else.

The CAMHS leave an awful lot to be desired. It is simply outrageous. I passed the Minister a letter this morning, through the usher, from Michael in Clonmel, whose 29-year-old daughter has profound disabilities, regarding the anguish he is going through and the caring he, his wife and their family are giving. There is no joined-up thinking within the services. His other daughter, Jenny, wants to get a housing transfer in order to be quite near him and to have a house in which she can accept and look after her sibling. Her present house has huge steps and is inaccessible. There must be joined-up thinking between the county council housing authority and families like this, who are saving the State an absolute fortune by keeping their loved one out of hospital. At 29 years of age, she is one of the oldest people living with the disability she has had since birth. I salute that family. I ask the Minister to act on it and try to get a sibling transferred to be near and to be able to help her father and mother who are getting old. It can be imagined that since their daughter with disabilities is 29, her father and mother are pushing on in years and have given work and dedication. There are many families like them throughout Tipperary and the country that save the HSE millions and are not treated with the respect they should be, let alone what the patient receives.

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
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I thank Deputy Tully for tabling this very important motion. Since I was elected in 2016, I believe that one cohort of people has been totally and utterly neglected; namely, elderly parents who are now in their 70s and 80s. They would be doing good enough to look after themselves without needing home helps and carers to do so, but they are also trying to mind older children who cannot mind themselves. These are strong boys and girls whose parents are not physically able to manage them anymore because they have to be lifted and may have to be restrained, etc. They are burdened with this and the biggest worry they have, when they go to their grave, is who will look after their son or daughter who is not well or has never been well since birth. These parents have gone through so much that you would think that when they reach 70 years of age the State and the HSE, which gets so much money to provide help to everyone, would look after them.

St. Mary of the Angels is a wonderful facility for these kinds of people. This place is being closed by stealth because it is deemed to be a congregated setting that the health service wants to close down. I will say to the Minister that there is a place for facilities like St. Mary of the Angels, where there are all types of services, including a swimming pool, that can manage a number of people. Some 70 or 80 people were looked after there for years. Now, when someone dies, that bed is closed down. That is wrong because this place was donated to the health service by the Doyle family. It includes a significant amount of land where all kinds could be built on it, instead of trying to close it. I will give one example. One elderly resident in St. Mary of the Angels, who is not able to look after herself, has a mother who is alone. That resident is now being told that she will have to leave and go to one of the most northern counties in the Twenty-six Counties, not 10 miles away from the Border.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
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Thank you, Deputy.

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
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This is very important. The mother is against this move because she has not got the facility or wherewithal to travel that distance or bring her daughter home. That is what is happening now to a family in south Kerry. This is the deal they are being offered by the HSE. I will give the Minister the details.

Photo of Bernard DurkanBernard Durkan (Kildare North, Fine Gael)
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We have to be fair to the other Deputies.

Photo of Catherine ConnollyCatherine Connolly (Galway West, Independent)
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I thank Deputy Tully for tabling this motion. I understand she is deputy Chair of the Joint Committee on Disability Matters, which made a pre-budget submission. I will draw all our attention to that because in its short introduction the committee calls for - this is a cross-party committee with everybody represented - the urgent ratification of the optional protocol as Ireland is one of the last countries to do so. We are an outlier. The Government likes to use the word "outlier" in relation to many things and we are clearly an outlier. This cross-party committee's submission goes on to say:

... the delay in ratifying the OP [optional protocol] represents an instance of structural violence where the lack of implementation of a complaint's mechanism and subsequent accountability, harms people with disabilities by preventing them from meeting their basic rights under the Convention.

This is a cross-party submission and includes 68 recommendations. It is about aligning the Government's programme with our obligations under that convention.

I call for the immediate publication of the disability action plan, as does this motion. I looked to see whether it had been published and I found another document. I am swimming in documentation and yet only have a small selection of what has been published on transforming the lives of people with disabilities. We are still waiting for that transformation but what has been transformed is language itself. We are no longer talking about the urgency of the provision of services but about gradually progressing. We are not talking about provision but about progression. We have certainly had a transformation but not in respect of services.

There is then insult upon insult. We have a report on the public consultation on the disability action plan. Can the Minister imagine more public consultation? This report mentions "a wide range of priorities" and "the need to root disability support services in the philosophy and rights set out in the" UN Convention on the Rights of Persons with Disabilities, which we keep failing to do. In my few minutes, I will just go back through report after report. I will go back ten years. Back in 2012, we had a report entitled Value for Money and Policy Review of Disability Services in Ireland. In 2014 we had the Transforming Lives programme, which is beautiful wording. This was described as "a national collaborative effort to build better services for people with disabilities". In the interest of not boring the Minister, I will skip a few and move to 2018 and a report on the future needs for disability services. In 2021, we had the Indecon review, which was absolutely damning in its findings, was it not? It was a disability capacity review. In the few minutes available, I will not go into everything but it states that the Health Service Executive "estimates there may be 600 people with no day service who need one" and that there is also "unmet need for those getting partial day services, which is estimated would be equivalent to an extra 600 full-time day places". There has been no action on that. It is another report.

To put this in context, people with a disability are more than twice as likely to experience poverty and deprivation, as has been said by everybody. One tires of saying this so I cannot imagine what it is like for people with disabilities who have been up in that Gallery listening to us talking about it. The Minister talked about us signing and ratifying the protocol. I will tell him how long that took. We signed it in 2007 but it took us to 2018 to ratify it. Unless the Minister is going to tell us tonight, God knows when we are going to sign the optional protocol so that it means something. In the meantime, we have failed to bring in a cost-of-living payment. Of course, I recognise there were good things in the budget including once-off payments but it gets to the point where that is insulting because it goes against the very core of what people are asking for.

There is a lot more I would like to say but I will finish, in my last 40 seconds, by mentioning someone who happens to be a neighbour of mine but who is also an author who has won many awards, Christian O'Reilly, author of No Magic Pill. At the centre of this play are people with disabilities. They are the main actors and actresses. They play to full houses and standing ovations in the Black Box Theatre in Galway and in the Civic Theatre in Tallaght. The play should be in the Abbey Theatre, our national theatre, because it puts people with disabilities exactly where they want to be. I recommend the play, No Magic Pill, in which people with disabilities are treated with respect and dignity. We should design our buildings to universal design standards.

9:55 pm

Photo of Marian HarkinMarian Harkin (Sligo-Leitrim, Independent)
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I am very happy to support this motion from Sinn Féin. It forensically looks at some of the major gaps in our system of supports for people with disabilities and it asks some of the hard questions. In many ways, the context is set by the failure to publish the capacity review action plan. It is already badly delayed. I listened to some of this debate in my office but I did not hear whether the Minister of State gave a commitment as to when this review will be published. If he did not, perhaps the Minister, Deputy O'Gorman, might be able to say something about it afterwards. Many might ask what good a plan is and say that we need action now. In a way, both of those are right. We do need action now but that action must be underpinned, informed and directed by the recommendations in the capacity review action plan. As Inclusion Ireland said in its pre-budget submission, there needs to be a proper plan in place for disabled people's lives because only when there is can we move from crisis to confidence.

The Minister of State spoke about the largest ever budgetary spend on disability. I have no doubt she and her colleagues played a significant role in ensuring that budget but surely any level of spending must be placed within a framework of action. I know her real commitment and her work. Crucially, I know individual needs and stories matter to her. In my view, empathy matters greatly in her work. However, the figures do not lie. More than 17,000 children are waiting for initial contact with the children's disability network teams. How is the Minister of State going to bring down those numbers when there is a 28% vacancy rate among posts in the network? Where is the workforce planning right now? Is there a high-level cross-departmental group addressing this issue? Are the colleges and technological universities on board? As we speak, can anybody tell me whether the intake of speech and language therapists has significantly increased this year or if there are 20% more health and social care professionals in our education system? Has the number of occupational therapists in training increased significantly? Unless this is happening now, that figure of 17,000 children will not fall. It certainly will not fall at the pace needed. What measures are being taken to retain staff or to attract staff from elsewhere? Are specific programmes under way to do this? If there are not, there will be another debate this time next year and we will be trotting out the same figures or similar. I know the Minister of State inherited an extremely difficult situation but none of us want to be here again next year or the year after and, unless we know that these plans are now in place, we know that is where will find ourselves.

I spoke earlier about the rights-based approach. In that context, I want to ask the Minister of State about the provision of personal assistance packages so that people with a disability can live independent lives. We know that is not possible for most people who have a disability unless they have personal assistance. It gives them dignity and a bit of choice as to how and where they live their lives and whether to go to work or social occasions. That is the only way to ensure an inclusive and accessible way of living for people with disabilities. However, that has to be supported financially. I may be wrong but I believe there are approximately 17,000 people who need personal assistance right now. Whatever the number is, can the Minister of State tell me it will decrease significantly at the end of this year?

I will echo the words of my colleague, Deputy Connolly, and ask for the ratification of the optional protocol to the UNCRPD. How soon can we expect that? The Minister and I know that this underpins what is in the UNCRPD. It gives confidence to people with a disability and tells them we are taking responsibility and that they can vindicate their rights. We all know that really matters.

Photo of Roderic O'GormanRoderic O'Gorman (Dublin West, Green Party)
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On behalf of the Minister for Health and the Minister of State with responsibility for disability, I thank all of the Deputies across the House for their contributions to this evening's debate. I also wish to acknowledge the points that have been raised about the significant and daily challenges faced by people with disabilities, their families and disability services. The Minister of State, Deputy Rabbitte, spoke about the significant funding provided by the Government for specialist disability services since 2020. As we know, budget 2023 had as its primary focus the urgent need to address the cost-of-living challenges currently facing the country.

It is important to note that the overall increase in specialist disability funding compares favourably to previous years. There is an allocation of €177 million in additional funding for the delivery of disability services in 2023. That reflects the Government's commitment to strengthening the funding provided for the disability sector. We made a commitment to work to improve the lives of persons with disabilities in the programme for Government. The increased funding in budget 2023 will give people with disabilities greater choice, independence and control to live their lives and to participate in a meaningful way within their local communities.

I am pleased that section 39 organisations in disability services, as well as nursing homes, hospices and other section 39 organisations, will be eligible to receive once-off additional support from within the overall health sector fund. The once-off additional fund of €100 million has been allocated by the Government in budget 2023 to support section 39 organisations that provide essential health services in the context of the significant challenges they are facing currently.

The additional year-on-year funding for disability services under this Government reflects a commitment to strengthening the funding provided for the disability sector and working to act to address the shortfalls identified in the disability capacity review. In July 2021, I was delighted to publish, alongside the Minister for Health and the Minister of State, Deputy Rabbitte, the disability capacity review to 2032. This report outlines how levels of service provision will have to increase to meet growing demand into the future, and the necessity of meeting levels of unmet demand. This reflects our obligations under the UNCRPD for progressive implementation of social, cultural and economic rights. This report contains invaluable data, which will allow us to plan to increase capacity in our services and ensure we meet the needs of those requiring specialist disability supports and services now and into the future. I was proud to have the report published as doing so shines a light on the level of need for disability services, which we as a country have a duty to address. I am totally committed to working towards the recommendations of the capacity review.

A working group was set up to develop an action plan for disability services, taking a cross-government approach, to drive the process of implementing the review's recommendations. The cross-government approach to this work is central. Ensuring appropriate supports and services for our citizens with disabilities is not simply a health matter but one that reaches across all of the Government and will ensure the totality of each individual with a disability is fully taken into account. The disability capacity review set out an estimate of future service requirements to 2032 and it is intended to address the capacity deficits in a phased approach over this period. The forthcoming disability services action plan will be an implementation plan for the first phase of this and is currently being finalised for approval.

The proposed transfer of specialist disability services functions from the Department of Health to my Department has been a complex process involving primary legislation, the development of administrative arrangements and a financial governance model. Officials in the Department of Health and my officials in the Department of Children, Equality, Disability, Integration and Youth have been working intensively to give effect to the transfer of responsibility for specialist disability services to my Department. This has been a complex process involving significant moving parts. I understand the frustration about the delay but we are dealing with a range and scale in the transfer of policy for the oversight of part of the HSE’s work. It is important that this be done right and that we have full accountability around those funding mechanisms to have accountability for the delivery of services.

The Government is committed to ensuring that the rights of people with disabilities are upheld and safeguarded and to ensuring they are supported to live the lives they want to and are provided equal opportunities to do so across the State. Ireland ratified the UNCRPD on 20 March 2018. This marked an important milestone in a process to strengthen the rights of people with disabilities in Ireland that has gathered momentum since Ireland became a signatory to the convention in 2007. Ireland submitted its first state report under the UNCRPD in November 2021 and we had expected to engage with the UN committee this year in reviewing our implementation of the convention since 2018. However, due to delays at UN level, we understand that Ireland's appearance before the committee may now be delayed for some time. In light of that delay, both the Minister of State, Deputy Rabbitte, and I have indicated that we are open to the earlier ratification of the optional protocol. Earlier ratification of the optional protocol is contingent on the State being in a position to meet its obligations under it. This is reflective of the State's long-standing approach to entering into binding international obligations in good faith and at a point where the State is in a position to meet its obligations.

As part of the development of a UNCRPD implementation plan, the requirements for ratification of the optional protocol are being scoped out and considered. My Department has engaged with its internal legal advisers, the Office of the Attorney General and the Department of Foreign Affairs in examining the requirements for ratification. One of those key points is the full commencement of the Assisted Decision-Making (Capacity) Act 2015. Its implementation will being us into full compliance on a range of UNCRPD measures. In order for that to happen, I am currently bringing legislation through both Houses. The Assisted Decision-making (Capacity) (Amendment) Bill 2022 has cleared the Dáil and is going through the Seanad at the moment. We recently finished Committee Stage and I look forward to completing Report Stage and bringing it back to the Dáil to approve the Seanad amendments in the near future.

A key commitment in the preamble of the UNCRPD commits state parties to recognise "the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support". Furthermore, this commitment is made through specific legislation, such as the Disability Act 2005, and through national disability policy frameworks of the national disability inclusion strategy and the comprehensive employment strategy for people with disabilities. Any review of the Disability Act and the development and review of policy will only be pursued with a view to ensuring the ongoing relevance of material on the Statute Book and in full cognisance of the constitutional and legislative rights of people with disabilities in Ireland, and of those rights and commitments set out in international law. The Government remains wholeheartedly committed to continually advancing the rights and obligations to which it has recognised and agreed to be bound by in ratifying the UNCRPD.

Many Deputies have voiced criticism of progressing disability services and have highlighted the significant gaps in the delivery of therapies for children. The Minister of State and myself are acutely aware of that, both from our roles as Ministers and as constituency Deputies. I recognise that many parents have lost confidence in this policy. That is why our Departments are working with the HSE to bring forward a clear roadmap for how we can get more therapists working on the front line in the CDNTs, train more therapists every year, and get the voices of parents into this system through operational and effective parental forums. We look forward to bringing forward this document soon to begin that process of trying to rebuild confidence in progressing disability services.

I again thank all Deputies for their contributions to the debate. I reiterate this Government's commitment to improving the lives of persons with disabilities. Deputies have raised real issues where the State must do better in meeting the rights of people with disabilities. The increased investment in budget 2023 allows us to do more but myself and the Minister of State are both acutely aware, as is the Government as a whole, of the need to do more.

10:05 pm

Photo of Martin BrowneMartin Browne (Tipperary, Sinn Fein)
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I commend Deputy Tully on bringing this motion forward. It is with a heavy heart that I have taken the opportunity to address the House on the motion. I will focus specifically on CDNTs and multidisciplinary teams, specifically in the area of autism and the eating disorder called avoidant restrictive food intake disorder, ARFID. This relates to a young boy called Riain in my town of Cashel, County Tipperary. People with autism spectrum conditions are much more likely to develop ARFID. As such, his anxiety towards food is having huge consequences on his health. He has lost weight to such an extent that his health is in severe decline, yet his family are unable to receive the treatment he needs. He ended up in South Tipperary General Hospital, which has been a godsend to the family. He was released with a feeding tube and was on compact protein administered by a food pump.

He has seen community dieticians over the years and attended weight checks, and various ways have been tried to encourage him to eat. Unfortunately, none has had any luck. In 2019, CAMHS diagnosed him as having ARFID. In early 2020, he became gravely ill and the feeding tube was inserted again. He was seen by CAMHS, which again confirmed that it was ARFID. It could not offer a service as it had no psychiatrist trained in the area of eating disorders yet it wanted to administer a drug for anxiety.

The family then turned to Éist Linn in Cork, which despite initially agreeing to take him on, subsequently refused him on the basis that it would be able to treat anorexia nervosa but because the linked condition of ASD is neither classed as a mental illness or a psychological disorder, ARFID must be managed differently and, therefore, does not fall under the remit of CAMHS. It also refused him on the basis that he is outside of its catchment area, which is incorrect. Instead, it threw the ball back into the court of the CDNT teams, which have already been shown to be unable to deal with it. Indeed, a recent letter to the local CDNT team in September from the medical social worker has gone unanswered. It will not take the lead. It is a vicious circle. CAMHS says the CDNT should deal with the case yet the CDNT does not have the experience to deal with ARFID. The boy's parents do not know where to go.

I have written to the Department of Health on this matter with little assistance forthcoming and that is why I am addressing the Minister regarding this matter today. The boy's parents are at their wits' end. If meaningful action to treat ARFID in this young boy is not taken soon, the family will have no choice but to go down a legal avenue. I appeal to the Minster here today to take this issue on board immediately, make contact with the family, whose name and address I have, and assist them in navigating the system to secure life-saving intervention. Every family has a different experience of services for their children with special or exceptional needs. I raised this case today as more than just an example but as an emergency case that needs to be dealt with.

10:15 pm

Photo of Ruairi Ó MurchúRuairi Ó Murchú (Louth, Sinn Fein)
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What we are talking about here are rights for citizens and be able to deliver a service. We are literally talking about a cradle-to-grave care. We all accept that this has been lacking. We could all reiterate some of the points made about psychology services, occupational therapy, speech and language therapy, and physiotherapy. We all know the waiting lists. Everyone has spoken about the 17,000 children waiting for initial contact with children's disability network teams. We all know this is not sustainable in the long term.

I welcome what has been said about dealing with the Minister for Further and Higher Education, Research, Innovation and Science regarding delivering workforce planning and the throughput that will fill these spaces but many have already spoken about the difficulties that exist regarding people who fall between services - when they may be engaged by the CDNT teams but need support from CAMHS. However, then it is a case of the child has a diagnosis of autism so CAMHS cannot deal with the case and vice versaand over and back. We have all come across these issues.

If we are talking about the ambit of disability services, it crosses too many Departments. We would nearly need every Minister in here. We have dealt with a number of issues relating to housing. Hopefully, I think we may have got across the line regarding some of them and got around some corners. We probably need a wider route map regarding how we can deliver. Many have spoken about the difficulties around adaptation grants. Even beyond that, there are people whose children face serious issues who may be able to avail of an adaptation grant but perhaps the house does not suit it. They cannot afford to move to a new house and are caught. Unfortunately, I will have more such cases to bring to the Minister of State in the near future. I dealt specifically with the issue of education in the Joint Committee on Autism. It could take about six hours to deal with the issues. We just need to deliver for people. It is as simple as that.

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank all the Deputies who contributed to this discussion of disability services and the Minister and Minister of State for remaining here for the two hours. That is appreciated. It is evident from the contributions that disability services are at an all-time low and there is need for immediate action to address the problems within the services and unmet need as outlined in the disability capacity review published last year. I again call for this disability capacity review action plan to be published without delay. We were told in here in July that it was within weeks of being published. It is now mid-October and we are more or less being told the same thing so it really needs to be published without delay.

Many contributors referred to children's disability services. I will address a few issues here. The problems identified within disability services involve the recruitment and retention of staff. The reason staff are leaving disability services are varied but some of them could and should be addressed without delay. The new Progressing Disability Services for Children and Young People does not seem to have a dedicated clinical lead. As far as I can see, it was established without proper planning or foresight and is basically rudderless. It needs leadership.

There needs to be pay parity for section 39 organisations. These organisations are haemorrhaging staff to the HSE because they are expected to deliver the same services for less money and that is not fair. The recruitment process is still very cumbersome, which has not been addressed. If any of these issues have been dealt with, I will welcome it but I believe the HSE has implemented the interim recommendations of the career pathway review in primary care only. Why has this not been extended to the CDNTs? Why are there no incentives to work in CDNTs - something similar to those offered to nurses working ICU?

I am led to believe that some teams do not have the adequate physical, clinical or office space they need; do not have access to some of the materials they require; and that access to HSE resources is limited to HSE employees and is not provided to section 39 organisations. If that is not true, that is great but that is what I am being told by some of the organisations. I also know administrative support is minimal or non-existent in some of the teams. That is something that could easily be addressed.

Health Services for Children in Ireland: A Guide to Workforce Planning set out the ratio of minimum staffing requirements for the different grades for CDNTs. The HSE is advising that this document is no longer applicable to the Progressing Disability Services for Children and Young People service. I do not know if this is true or not but it has not produced any replacement policy or methodology to determine how the CDNTs need to be staffed. There are also concerns about gaps emerging in the provision of clinical supervision that could lead to risks within the services.

Following the High Court decision in March 2022 regarding preliminary team assessments, I believe there was engagement around the development of a new standard operating procedure and that guidance was developed. I am not sure if that guidance has been delivered. I am led to believe that the process has been in limbo since March.

The Minister of State spoke about therapists going back into special school settings and that there was an issue with Fórsa in that regard. I am led to believe that the issue is that the therapists going back into the special school settings are being taken from the CDNTs. The Minister of State can clarify if this is the case. These teams are already savaged and under-resourced. They cannot afford to lose therapists. We need them in our special schools but we also need them in our disability network teams.

Regarding adult services, much more consideration needs to be given to personal budgets to give people more choice over decisions regarding their lives and to allow them to employ personal assistants or to meet more care needs. A number of speakers have mentioned ratifying the optional protocol. It is bad enough that it took us 11 years to ratify it after signing it but both should have been ratified together, which has not happened.

I commend DPOs and the many parents' groups, which are doing immense work in trying to get services for themselves and their children. They are constantly fighting a battle that they should not have to fight. I again thank all my colleagues for supporting the motion.

Amendment No. 1 put and declared carried.

Motion, as amended, agreed to.