Dáil debates

Wednesday, 24 May 2023

Access to Autism and Disability Assessments and Supports: Motion [Private Members]


9:52 am

Photo of Duncan SmithDuncan Smith (Dublin Fingal, Labour)
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I move:

That Dáil Éireann:

recognises that:

— the needs of children should be met by the State through the provision of well-resourced public health and education services, particularly for those with additional needs, and that early intervention is vital, but in far too many cases children are being failed by an under resourced, and over capacity system for assessment of needs and provision of essential supports and therapies once a diagnosis of autism or disability is secured;

— the 2020 Ombudsman for Children's Office report entitled "Unmet Needs: A Report on the Challenges Faced by Children in Ireland Who Require an Assessment of Their Needs" and the 2022 annual report entitled "Falling Behind", highlighted significant delays in the provision of assessment of needs (AON), while the Oireachtas Joint Committee on Children, Equality, Disability, Integration and Youth Report on Assessments of Need for Children, published in February, made 39 recommendations that need to be implemented; and

— the Health Service Executive (HSE) has a "Progressing Disability Services for Children and Young People" project, but enormous capacity constraints remain, and it is not working for far too many families;

notes that:

— assessment delays, multi-year waiting lists for therapies and lack of access to education supports and appropriate school places is profoundly impacting on thousands of children;

— as of March, 10,696 children have been waiting for over 12 months for initial contact with a Children's Disability Network Team (CDNT), an increase of 836 since December, and 17,157 were waiting in total;

— 4,613 children were waiting on an AON under the Disability Act 2005 at the end of 2022, 3,155 of those were waiting more than three months, and these figures are a significant underestimate of the actual number waiting;

— 102,581 children were waiting for a primary care disability intervention in March, and these figures don't include those on CDNT lists, with: — 14,891 children waiting for a psychology appointment;

— 15,305 children waiting for an occupational therapy first-time assessment;

— 8,054 children waiting for a physiotherapy assessment;

— 31,073 children in total waiting for speech and language therapy, with 14,927 awaiting initial assessment, 7,606 awaiting initial therapy, and 8,540 waiting on further therapy;

— 6,517 children waiting for a dietetics appointment;

— 15,985 children waiting for an ophthalmology appointment; and

— 10,756 children waiting for an audiology appointment; — the most recent HSE staff census in October 2022, showed that 34 per cent or 707 posts were vacant across CDNTs, and there is an urgent need for strategic work force planning;

— Individual Family Service Plans often limit access to waiting lists for direct clinical therapeutic supports, despite clear indication of need; and

— without early intervention, diagnosis and swift access to supports, a child is at risk of permanent developmental delays, leaving parents who can afford it with no choice but to resort to private healthcare;

further notes that:

— an important precedent was set by the HSE when it picked up the cost of a local private psychological assessment in 2023 for a specific child who had been waiting many years for re-assessment, therefore, delaying access to appropriate school supports;

— parents and caregivers are deeply frustrated with the lack of accountability and a fit for purpose external or independent complaints system in the HSE;

— 39 per cent of Child and Adolescent Mental Health Services referrals were not accepted in 2022, and in some cases, this is due to behaviours being interpreted as consistent with autism and related diagnoses, with children falling through the gap in services between mental health and disabilities;

— there is in practice no public diagnostic service for autistic adults in Ireland outside of in-patient mental health services, and there is a lack of financial support for autistic-led and parent-led community groups across the country;

— a 2021 study on the economic costs and unmet needs of autistic children found the annual cost per child for families amounted to over €28,000 as a result of paying for private autism services, lost income and informal care;

— the restrictive means test and low rate of Carer's Allowance payment and complex application for Domiciliary Care Allowance is not sufficient to meet the financial needs of those caring for dependents;

— ongoing problems with the provision of special classes and schools, delays in the annual allocation of Special Needs Assistants (SNAs), and the inadequacy of the Summer Programme is a further burden on parents and caregivers; and

— the work of the Oireachtas Joint Committee on Autism in considering matters relating to services and supports for autistic people is vital and the Committee is due to report in June, but this will not address, in the short-term, the current crisis in accessing assessment, therapies and supports;

recalls that:

— there have been multiple motions and bills proposed in the Oireachtas to address these issues, including Labour's National Autism Empowerment Strategy motion in April 2021, and the Autism Bill in June 2022; and

— workers in Section 39 organisations still do not have pay parity or comparable terms and conditions with their colleagues in the HSE; and

calls for:

— the immediate provision of financial relief for parents and caregivers forced to pay for local private assessments and therapies, by allowing the cost to be either reimbursed, or paid for through the National Treatment Purchase Fund or the joint Waiting List Initiative, if waiting more than six months, until such time as backlogs are cleared;

— increased accountability from the HSE in relation to child disability services, and the introduction of a fit for use, external and independent complaints process, along with funding for autistic-led, and parent-led community support groups;

— a full review of Carer's Allowance and other social protection income supports, to ensure it meets the needs of parents, guardians and next of kin caring for relatives, with the introduction of a cost of disability payment in the next budget;

— a workforce planning strategy to address staff shortages in disability services, alongside pay parity for those in Section 39 organisations;

— increased resources for the school Summer Programme, which should be offered in every special school, alongside improvements to the terms and conditions of SNAs; and

— a National Autism Strategy underpinned by legislation, and a review of the Disability Act 2005.

In 2021, the Labour Party brought a motion to the Dáil that was supported across the House calling for an overarching autism strategy. In spring 2022, we brought forward an autism Bill seeking to underpin our strategy that was accepted by the Government, but alas there has been no movement towards progressing our Bill. Today we move this motion on access to autism and disability assessments and supports, which calls for among other things, a clear and efficient pathway for accessing appropriate multidisciplinary assessment of needs. Following our continued work with disability groups, autism groups and many activists, many of whom are in the Public Gallery today, we believe this blockage of assessment of needs can be overcome for many with a clear reimbursement policy by the HSE for those families who cannot get assessments of needs within the three- to six-month timeframe as set out in the Disability Act.

On that note, I thank the Darmody family - Mark and Cara - whom we met as a party two weeks ago and who have been campaigning on behalf of Cara's brothers Neil and John. When the HSE agreed to pay for an assessment for Neil, we believe it set a precedent, and one we understand has been happening on a piecemeal and individual basis throughout the country. In discussion with the Darmodys, we believe through this motion, if accepted by the Government and, more importantly, acted upon, this should be offered to every family that is currently being let down by a public system that is creaking with capacity issues. We hope that at this third time of asking, we will see in the Government's reply at least one tangible commitment that will actually be delivered and will result in perhaps just one less battle for autistic people, people with disabilities and their families to have to fight.

Our motion recognises that the needs of children should be met by the State first through the provision of well-resourced public health and education services, particularly for those with additional needs, and that early intervention is vital. However, in far too many cases, young children are failed by an under-resourced and over-capacity system for assessment of needs and the provision of essential supports and therapies once a diagnosis of autism or disability is secured.

As we know with assessment of needs, there is a window of opportunity through which children must be assessed to get, it is hoped, the supports they need either therapeutically or educationally as they progress through childhood. The 2020 report from the Ombudsman for Children, entitled Unmet Needs: A report on the challenges faced by children in Ireland who require an assessment of their needs, and the 2022 annual report, entitled Falling Behind, highlighted significant delays in the provision of assessment of needs. The Oireachtas Joint Committee on Children, Equality, Disability, Integration and Youth report on assessment of needs for children published in February made 39 recommendations that need to be implemented.

We note that assessment delays, multi-year waiting lists for therapies and lack of access to educational supports and appropriate school places are profoundly affecting thousands of children throughout the country. Yes, there are some areas that perform better than others, but overall too many children and families are being left behind.

As of March, 10,696 children have been waiting more than 12 months for initial contact with a children’s disability network team, CDNT, which is an increase of 836 since December, and 17,157 were waiting in total. A total of 4,613 children were waiting on an assessment of needs under the Disability Act at the end of 2022 and 3,155 were waiting more than three months. We know these figures are a significant underestimate of the actual number waiting. A total of 102,581 children were waiting for primary care disability intervention in March - these figures do not include those on CDNT lists - with 14,891 children waiting for psychology appointment; 15,305 children were waiting for an occupational therapy first-time assessment; 8,054 children were waiting for a physiotherapy assessment; 31,073 children in total were waiting for speech and language therapy with 14,927 awaiting initial assessment, 7,606 awaiting initial therapy, and 8,540 waiting on further therapy; 6,517 children were waiting for a dietetics appointment; just under 16,000 children were waiting for an ophthalmology appointment; and just under 11,000 children were waiting for an audiology appointment.

The most recent HSE staff census in October 2022 showed 34% or 707 posts were vacant across CDNTs, highlighting the urgent need for strategic workforce planning. We know the CDNTs can be operated by the HSE or section 38 or section 39 voluntary organisations. The Labour Party has been leading the campaign in this House supporting the trade union movement to ensure there is pay justice and pay restoration for section 39 organisations to try to stem the outflow of staff from those organisations which are providing vital CDNT services. We know that underpinning a lot of this is the cost-of-living and housing crisis and we have debated that in many debates recently, but we cannot let this debate go without acknowledging that these crises need to be resolved as well and we need to see more from the Government.

Without early intervention, diagnosis and swift access to supports, a child is at risk of permanent developmental delays. I think what we will hear back from the Government is that children do not need assessment of needs to access CDNTs, but we know assessments of needs are vital in terms of accessing early years childcare interventions such as preschool, accessing proper school places, and informing appropriate therapeutic pathways through the health service. We note that an important precedent was set by the HSE when it picked up the cost of a local private psychological assessment in 2023 for Neil Darmody, who had waiting many years for reassessment. This is what we are asking for here. Everyone wants the State to be able to meet the needs of children who require assessments of needs. It is statutorily obliged to start an assessment of needs within three months of an application and to have it finished within six months. We know the State is failing. Until such time as those waiting lists are being met, those targets are being delivered by the State and where capacity has been found, if a family has the ability to get an assessment of needs in the private sector, the HSE should pick up that tab for that family. If families are struggling to find someone to perform that, the HSE should be able to assist them. This is what we are asking for and this is what we want to see in the reply.

The restrictive means test, low rate of carer’s allowance payment and the complex application for domiciliary care allowance cannot continue. This is feeding into the many battles autistic people and families have to face. The domiciliary care allowance is overly complex. Too many people fail the application form. All you need to do is check the DCA Warriors Facebook page where more than 35,000 members share their awful stories of trying to apply for this much-needed payment and having to jump through more hoops than for any other payment in our social protection system or any other service in our public system. Nothing compares to the hoops that have to be jumped through for the domiciliary care allowance. We need to see a full review of the domiciliary care allowance and the carer's allowance.

Regarding the ongoing problems we have with the annual allocation of special needs assistants, SNAs, this is all related. If we had earlier assessment of needs, we would know earlier within communities what the needs are within schools and be able to get the number of SNAs hired and delivered far earlier. Families are going into the summer break not knowing if their children will have an SNA.

We are calling for the immediate provision of financial relief for parents and caregivers forced to pay for local private assessments and therapies by allowing the cost to be either reimbursed or paid for through the National Treatment Purchase Fund or the joint waiting list initiative if waiting more than six months until such time as the backlogs are cleared and are in line with the statutory obligations.

We want increased accountability on the part of the HSE in respect of child disability services and the introduction of a fit for use, external and independent complaints process, along with funding for proper autism-led and parent-led community support groups. There will also be a full review of the domiciliary care allowance. There will be a workforce planning strategy to address staff shortages in disability services within the HSE and specifically within the voluntary sector. Increased resources will be provided for the school summer programme, which will be offered to every special school. A national autism strategy will also be put in place.

I have been asked to raise an issue by disability groups and people in my constituency. The Taoiseach made a comment last week while he was directing a political barb at another party. He used the term "slow learners" as an insult. I do not think this wounded the party it was aimed at as much as it cut people with intellectual disabilities, autistic people and their families to the bone. I have been asked to ask the Taoiseach, who is an experienced politician in his second term as leader of the country, to apologise for using those words and to apologise to the people who have been deeply hurt and wounded by his comment.

10:02 am

Photo of Ivana BacikIvana Bacik (Dublin Bay South, Labour)
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"Nobody is treating this like the house is on fire". Those are the words that 12-year-old Cara Darmody used to describe her frustration at the lack of supports for autistic people and children in Ireland. She used them when addressing the Joint Committee on Autism in November alongside her dad Mark, when they spoke about their experiences seeking services for her brothers. I welcome Cara, Mark and so many other parents and activists on autism to the Public Gallery.

As Deputy Duncan Smith said, since this Government took office, this is the third time that the Labour Party has introduced legislation or motions in the Dáil seeking to rectify the lack of services for autistic people in Ireland. Each time, when the slot in Private Members business comes to an end, the institutional hostility that is shown by the State to parents, their children and autistic adults remains and goes unaddressed. I do not think anyone in this House is comfortable to hear about autistic children being denied access to education or to vital supports. I do not think any of us is comfortable hearing the deep concern and despair from parents at the prospects for their children, if they autistic, as they move into young adulthood. There is a pronounced lack of supports and services for these children. It appears to us in the Labour Party that nobody is treating this like the house is on fire. Thee buck stops with the Government. I welcome the fact that the Government is not opposing our motion. That said, we need to see action in respect of this matter. We hear so many times from younger and older autistic adults of how they were failed as children and of their concerns that autistic children are still being failed by the education system.

I commend and thank the national organisations that are working to strengthen and improve services. I refer to groups like AsIAm and Families Unite for Services and Support, FUSS, Ireland. I also refer to groups in my own constituency, namely, Neurodiversity Irishtown, Ringsend and Pearse Street, NIRP, Involve Autism D6D6W & Surrounds and the brilliant Ranelagh Rockets that are part of Ranelagh Gaels GAA club. Thanks to their campaigning and the passion of so many parents and so many communities, we are starting to see progress in schooling. That is acknowledged. I see classes St. Saint Mary's National School, Belmont Avenue, Templeogue College and the new Libermann Spiritan School in Templeogue. These improvements will be a lifeline for children and parents, but we are coming from a very low base. From all around the country I hear stories and experiences from people like those involved in the brilliant Rainbow Club in Cork or the Special Needs Action Group I met in Athy in Kildare on Monday. These are groups of parents who have come together because they are in despair at the lack of services offered to them and their children.

We are seeing a real failure in the context of the section 37A process, which could and should be used to secure education places and additional special classes. Since 2020, we have not seen this process being used. Three years is a long time in the life of a child when there is an established need among so many children in so many areas.

To give another example of failure, more than one in three approved posts in the CDNTs is lying vacant. Children are languishing on waiting lists for assessments for years. That is one of the issues we focus on in our motion. We recognise that getting an assessment is not a panacea either, as parents will be well aware. Unspent budgets and a staffing crisis across CDNTs means that the only meaningful effect of being seen is that a child is no longer recorded as awaiting care in official figures. In reality, that child will continue to not receive any adequate service.

Yesterday, I hosted a group from Ukrainian Action Ireland and heard about the experience of Ukrainians here who inform us that parents of neurodiverse children in the Ukrainian community are dismayed at the lack of services for their children. We hear from staff who are experiencing burn out and leaving for better paid jobs. As Deputy Smith stated, the Labour Party sought to address this by looking to increase pay for section 39 workers and those in the community and voluntary sector. However, we are hearing about annual staff turnover rates of 80% across CDNTs and community and voluntary sector workers. There is such dismay and frustration at the lack of services and the lack of co-ordination of services.

It is good to see both Ministers here. We welcome the Government's approach to our motion, but that is simply not enough. It is nice to reconnect with the familiar faces of the parents and activists in the Gallery, but I am deeply sad that there is still the need for them to come out again on this issue. We hear from parents who are exhausted from fighting for services for their children and who despair about the lack of services for young autistic people and autistic adults. It is really shameful that we are again debating this issue and that, as Cara Darmody put it so eloquently, nobody is treating this issue like the house is on fire.

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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I wish to speak for those families who cannot get access to respite care particularly when their child attends a special school under the patronage of an education and training board, ETB. The case of Julie Anne Cunneen and her 16-year-old son Liam was highlighted on the "This Week" programme on Sunday. Liam attends Carrigaline Community Special School. He cannot get access to respite services and neither can other students of this school. Cork ETB has no direct access to overnight respite services and no direct access beds. Students who attend the school are locked out of respite services because they are not clients of traditional providers like the Brothers of Charity, the Cope Foundation or Enable Ireland. Julie Anne and Liam need access to respite care as a matter of great urgency. Mother and son are both profoundly deaf. Both suffer with chronic pain. Liam has severe dyslexia, dyspraxia, hypermobility and a mild learning disability. Julie Anne has never had access to overnight respite care. They both need a break.

The problem for Julie Anne and Liam and the families of Carrigaline Community Special School and other schools around the country is that they cannot even get on a list where the patron, namely, the ETB, is not a traditional disability services provider. We know that there is provision for 27 overnight respite beds for children under 18 years of age in Cork city and county. We also know that the HSE has suppressed or suspended ten of those beds because of staff shortages. There are only 17 respite beds available in Cork today.

I will outline what we want for these people. We want the Minister to end the discrimination and segregation that these families face on a daily basis. We also want people like Liam and Julie Anne not to be locked out of services anymore. We want organisations like Cork Parents Unite to be listened to. We want the Government to acknowledge the crisis and start providing beds to lessen the risk of a parent potentially incurring a catastrophic injury.

Julie Anne has given me permission to speak for her. She has told me that Liam can go into what she calls meltdowns very quickly. She has been injured when Liam loses the ability to maintain his composure when he becomes overwhelmed. He is going through a particularly difficult period at the moment.

A total of four risk assessments have been carried out by the HSE in respect of the Cunneen family. In one of those assessments, Julie Anne stated:

Liam’s behaviour is getting very out of control for the last number of weeks. He is getting more and more aggressive.

We were in Dublin on Friday to attend a hospital appointment.

On Saturday morning Liam gave me an almighty beating ... The guards had to be called ... I am still struggling to walk and am suffering from ongoing headaches and dizziness.

That mother loves her son. She loves him to bits. It is absolute desperation that forces her to take these steps to air what are very private family matters in the public domain. Such is the desperation these people feel. All I want is for the Ministers, who I know to be sympathetic and empathetic people, to intervene please on behalf of this family.

The language in the risk assessment I quoted represents only the tip of the iceberg concerning the number of incidents that have occurred within the household. How did we get to a stage where alarm bells did not go off in the HSE indicating an emergency intervention should be made for the family? People have to take desperate measures when seeking access to services. They have to share so much of what is very private information in the public domain. The Minister should please intervene on behalf of the family in question and the thousands of others who badly need emergency respite now.

10:12 am

Photo of Roderic O'GormanRoderic O'Gorman (Dublin West, Green Party)
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I thank Deputy Duncan Smith and his colleagues in the Labour Party for tabling the motion. I welcome the opportunity to restate the Government's commitment to children with disabilities and their families. We must face important and very real challenges if disability services are to meet the hopes, expectations and needs of those at their heart and enable them to optimise their potential in life.

It is absolutely accepted on this side of the House that the pace of improving disability services for children to ensure equal opportunities for all has been too slow. I hope the Minister of State, Deputy Rabbitte, and I can outline this morning the progress that has been made and also the important steps we are continuing to make.

The motion covers a number of cross-cutting areas and highlights the interrelated and cross-governmental nature of providing support to people with disabilities. In March of this year, the transfer of specialist disability functions from the Department of Health to my Department was completed. This transfer will provide new opportunities to continue work on improved cross-Government policy development, service provision and, in particular, the implementation of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. The transfer signals the Government's commitment to and recognition of the scale of the task of creating better integration and more opportunity for our citizens with a disability. This is aligned with a whole-of-government approach that sees a range of initiatives and efforts across Departments to advance services and supports for people with disabilities, their families and their carers and progress the cause of Ireland achieving better alignment with the principles set out in the UNCRPD.

It is worth noting that this commitment has been backed up by significant funding in recent budgets. This year's budget sees a record annual amount of €2.63 billion for community-based disability services to reinforce and support the sector and provide for new services and improved services. Despite these commitments, it is absolutely acknowledged that many challenges still pertain and that it is of the utmost importance that we fully apply ourselves to finding solutions. For this reason, the Government will not be opposing the motion. Across the House, our aims and objectives are very much aligned on these important issues.

The motion rightly notes the difficulty experienced by families in accessing the vital therapies and supports they need to help support their children. It would be disingenuous to ignore the fact that there have been genuine difficulties in parts of the country with the implementation by the HSE of the programme Progressing Disability Services for Children and Young People, PDS. This has resulted in delays, often extremely significant, for families in accessing much-needed services for their children. That position is not acceptable.

Every single Deputy in this House has been contacted by a family at some point in the recent past regarding delays in getting an assessment of need or access to therapy, be it speech and language therapy or occupational therapy, or other supports to help their child. The frustration and anger that come across in the letters, emails and phone calls to our offices are heart-breaking but also entirely understandable.

The motion rightly points out the capacity issues affecting access to vital therapy supports through CDNTs, with many families experiencing waiting times that are far too long. Funding has been provided in recent years for additional posts to enhance the capacity of CDNTs and shorten waiting times. One hundred and ninety posts were allocated to children's disability services in budget 2022. Budget 2023 provided for an additional 136 posts specifically to provide services in 104 special schools for children with complex needs. The overall funding in recent years provides for over 600 whole-time equivalent posts. However, the reality is that there are genuine recruitment challenges in the disability area. This is due to several factors, including workforce availability and the significant number of employment opportunities across the wider health sector. These opportunities provide personnel with options regarding the areas where they wish to work. Working with children with complex needs is very rewarding but also very demanding, and the recruitment and retention of staff are presenting very real challenges to the HSE. These challenges affect the capacity of the services provided. It is obvious that demand for therapeutic supports is outstripping supply and that more therapists are required to meet the demand. It is a recruitment issue as distinct from a funding issue.

To address the recruitment issue specifically, the HSE is progressing several initiatives to improve the supply of potential therapists to the disability services area. My colleague, the Minister of State, Deputy Rabbitte, has been deeply engaged in this work. The initiatives include: confined competitions to fill all vacant senior posts across all disciplines on CDNTs; targeted national recruitment for CDNTs; targeted international recruitment for CDNTs, including relocation allowances; and sponsorship programmes for therapy grades. In addition, the Department and HSE are exploring the following additional options: an apprentice programme for therapy grades; the employment of graduates as graduate therapists as they await CORU registration; the expansion of therapy assistants in the system, with the HSE supporting individuals to return to education to qualify as therapists; and an increase in the number of clinical placements on CDNTs.

Despite recruitment remaining a challenge, the HSE and my Department remain committed to progressing efforts to increase the workforce and deliver better services to children. I realise that listing a range of recruitment initiatives can seem somewhat removed from the very real pressures that parents and children are facing, but I cannot overstate the extent to which the challenges in our CDNTs are primarily driven by the shortage of staff. That is why recruitment and retention have been my core focus and that of the Minister of State, Deputy Rabbitte, since the transfer of functions. Indeed, it was also her focus while she was operating within the Department of Health.

We look forward to the HSE rapidly publishing its PDS roadmap, in which it will set out in detail the range of recruitment and retention measures as well as wider measures to improve engagement and communication with parents. Deputies have spoken about the anger and frustration of parents over the lack or poor quality of communication by the HSE. Even when bad news has to be delivered, it is better to deliver it up front rather than shroud it in jargon. This is something the Minister of State, Deputy Rabbitte, and I have highlighted.

The motion points out that the recent staff census of CDNTs highlighted an overall vacancy rate of 34% across the teams. That is too high. We will be working in conjunction with the HSE to reduce it. It is worth noting that there was an increase of 11% in approved posts between 2021 and 2022, as well as an increase of 2% in actual staffing levels. This was achieved in the context of an average turnover rate of 9.6% in health and social care professionals each year.

The issues affecting the assessment of need process have been very much the same, with demand significantly outstripping the capacity to deliver. To drive down waiting times for assessments of need, the HSE has been allocated funding in budget 2023 to facilitate additional assessments through a suite of measures. These include the establishment of dedicated assessment of need teams, private procurement and overtime initiatives for existing staff, and the recruitment of administrative resources to free up therapists so they can assist with the assessments. The implementation of these additional initiatives on the assessment of need side will be set out in the forthcoming PDS roadmap.

I hope I have been able to demonstrate that the Government very much understands the scale of the challenge in this area and that, working with the HSE, it is making concrete efforts to alleviate the problems and improve services and supports for children with disabilities and their families.

We are acutely aware of the impact of these delays on children and their parents and guardians. Within our Department, we have identified improving children’s disability services as our absolute priority. My colleague the Minister of State, Deputy Rabbitte, has been consistently proactive in her engagement throughout the country in respect of individual issues when they arise and of the wider reforms needed to improve services. No one, irrespective of their allegiance in this House, wants to see a child having to wait one day more than is necessary to receive therapy supports. I assure all Deputies that the Government and our Department will remain focused on providing the best possible services for children and adults with disabilities.

10:22 am

Photo of Gerald NashGerald Nash (Louth, Labour)
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I am sharing time with Deputy Ó Ríordáin.

I want to talk about a family in crisis, and what I am about to say will resonate with the Minister of State and builds on remarks made earlier by my party colleague, Deputy Sherlock. This week, I received an email from a struggling, loving and caring mum who had spent most of the past week sitting worriedly by her autistic son's hospital bed. She has every right to be beside herself with worry. Her son is in hospital because of what the woman who knows him best describes as "uncontrollable behaviours". He is an autistic person who has multiple other conditions and mental health problems too. He has been hospitalised on a number of occasions, with the Garda and other authorities often involved. He injured himself in school. He is, at the moment, a danger not just to himself but also, sadly, to family members and others. It is a huge statement that that family had to make to me this week. It was a statement about somebody they love dearly. The family are at breaking point - it is as simple as that - and they also fear for their loved one's safety.

Their son does not need to be in an acute hospital bed any longer. He needs permanent residential support, and in the meantime, he and the family urgently need appropriate respite care. The stress, the sleepless nights and the anxiety are simply unfathomable and intolerable, and I know the Minister of State will agree no family should have to go through this. We are trying to help, but the situation is completely unfathomable. I spoke last night to my good friend Jacinta Walsh, who will be known to many Ministers and others in this House as the mum of a young autistic person. She has been an incredible advocate for autistic people over many years. She tells me that at least three other teenagers bordering adulthood and occupying hospital beds in the north east and north County Dublin are in the same position as that which I described.

I do not want to identify the families. The truth of the matter is that even making the reference I made will not identify the families because this is an all-too-common state of affairs. It could be anybody. These are young people who will at some point soon leave the CDNT system only to arrive at the door of adult services and start an exhausting journey all over again. As it happens, the young person to whom I referred earlier is being supported for an application for a residential service in one county, but by the time that has been processed, there is a good chance he will be in adult services governed by a team in a different county by virtue of his address and the local service arrangements. This illustrates the lack of joined-up thinking, integration or a continuum of care and support for autistic people throughout their lives. This merry-go-round is intolerable. I know the Minister of State will agree it simply cannot go on. It is inhumane and it needs to change. The bureaucracy and the lack of effective responses from the HSE are, I am afraid to say, destroying families.

One long-time advocate told me yesterday that while there is evidence of some improvements in the education system, which can be patchy, the health system is just getting worse. I take no pleasure in saying that as an Opposition Deputy. Nobody in this House has a monopoly on humanity or compassion, and I know the Minister and the Minister of State to be people of sincerity, empathy and care. I am sick and tired and I think they are too. We all are. A family has been sitting around with HSE officials and others, having meetings with well-intentioned and caring staff, only for nothing to come out of that process at the end. There is no solution, no urgency. People have concluded that merely lip service has been paid to the challenges being faced by families and that simply is not good enough.

We need to reflect on what our party leader, Deputy Bacik, said earlier about institutional hostility. That is how it appears to me as a long-standing public representative and, more important, to the families who are caught in the middle of this completely intolerable situation. Something has to give. We need to focus collectively on solutions. I note that the Minister of State will not oppose the motion, but we need progress.

Photo of Aodhán Ó RíordáinAodhán Ó Ríordáin (Dublin Bay North, Labour)
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I thank all my party colleagues and especially Deputy Duncan Smith, who drafted the motion. The point of the Labour Party is to bring forward to this House the cases of those who are most disadvantaged in our society. We bring forward the cases of workers, people in disadvantaged areas, people who suffer injustice and people who are treated as second-class citizens.

This is the third time during this Oireachtas term, as my party colleague Deputy Smith said, that we have brought forward, in our Private Members' time, a motion on autism. That is because in our interactions with families who have autistic people within them, they know they are being treated as second-class citizens and they are exhausted. I feel as though I have made this contribution far too often, but it is heartbreaking to look at your child and, within your heart, to know they are being treated as a second-class citizen. These parents are completely exhausted from dealing with this diagnosis, learning about it and understanding all that is being said about it, yet when they get on the phone or send an email, as my party leader, Deputy Bacik, quite rightly said, there is institutional hostility.

Imagine that feeling, and then imagine the feeling parents should have, which is that in this country that proclaims itself as a Republic, the State would envelop them with a feeling of care and compassion and a sense that their child is not a second-class citizen but a valued member of this Republic. Why, then, do they have to go to war to get an assessment, a basic intervention or even a school place? Can we imagine how humiliating it must be to have to ring your local Deputy to try to access a school place for your child because your child is autistic? That child is a second-class citizen.

It should not take, as Deputy Sherlock said, a family to rip open their private matters in the public sphere to get the most basic provisions any other European country could take for granted. It should not take Cara Darmody, a child in primary school, to sit a leaving certificate maths exam just to focus attention on how the State has failed her two brothers. It should not take Alison Field to turn to politics and run in a local election next year to focus attention on how the State has failed her son James. We should not have a debate about autism and the lack of services for people with autism in the absence of the Minister of State with responsibility for special education, because that is a huge part of this debate and she is not here.

Again, there are issues with SNA allocations, while the disrespect shown to those people who work most intently with people with disabilities in our education system, by their not knowing whether they will have a job next September as late as May, and last year as late as June, is another part of the problem.

I do not know if this is a governmental ploy to not oppose these motions or if it is a statement of compassion, care and intent from the Government's side of things. I hope it is. However, this is the third time we have done this. From the Labour Party of view, the Ministers know we get these slots every six weeks. We get two hours every six weeks to raise something we feel is of passionate importance. If we come across a group in Irish society who we know are facing hostility or are being treated as second class citizens, as a party, we have to and are morally obliged to do something about it. It should not take Cara or Alison to do what they are doing. It should not take families to open up their private affairs to try to get some small changes. Let us please not have this debate again this time next year. Let us see real change.

10:32 am

Photo of Pauline TullyPauline Tully (Cavan-Monaghan, Sinn Fein)
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I welcome the opportunity to speak on the topic of autism and disability assessments and supports today. I thank the Labour Party for bringing this motion forward.

All 91 children's disability network teams, CDNTs, are up and running since 2021. The establishment of these teams was part of the reconfiguration of children's disability services and the aim was to ensure fairer access and clearer pathways to assessments and therapies for children and young people with autism or a disability. These aims are simply not being met. We are failing children and young people who need timely and appropriate assessments and therapies. The numbers waiting for an initial contact from their CDNT demonstrate this. More than 17,000 children and young people are waiting. Almost 11,000 of those are waiting more than 12 months.

The latest CDNT staff census and workforce review reveals that the staff vacancy rate has risen from an average of 28% in 2021 to 34% in 2022. There were 707 posts vacant across the 91 children's disability network teams. Some teams have vacancy rates of more than 60%; one team has a vacancy rate of 68%. In my county of Cavan, the vacancy rate is 41% and in County Monaghan it is 47%. In fact, Cavan has worsened since that census was done and we are about to lose our only speech and language therapist in the coming weeks.

In February this year, the Joint Committee on Autism engaged with some of the organisations representing therapists involved in the CDNT, namely, the Psychological Society of Ireland, the Irish Association of Speech and Language Therapists, and the Association of Occupational Therapists of Ireland. I was shocked to hear from these organisations that although they had requested meetings to discuss the best way forward in the implementation of the children's disability network teams, they were never, and still have not been to my knowledge, facilitated in this regard by the Department of Health or the HSE. Turning a deaf ear to those on the front line, who are delivering the assessments and the therapies, is most definitely not the way to ensure the CDNTs are fit for purpose and delivering for children and young people with autism or disabilities. Meaningful consultation should have taken place with these organisations well in advance of the reconfiguration. Consultation should now take place without further delay and should include representatives from the HSE's national clinical programme for people with disability, HSE operations and HSE resourcing.

Sinn Féin brought forward a number of motions in 2022 relating to children's disability services and each of these called on the Government to put in place a comprehensive workforce plan to train, recruit, and retain CDNT staff. This plan was to be completed at the end of quarter 1 of 2023. The Minister said his roadmap is imminent. Have the organisations representing therapists been consulted in this process? Does the roadmap progress delivery of the terms and conditions for section 39 workers? Has it looked at the issue of career pathways for staff?

The programme for Government has a commitment to extend the remit of the National Treatment Purchase Fund, NTPF, to secure timely assessment for both child and adult psychological services. This commitment has not been delivered. In a letter to me, the Minister said that the joint waiting list initiative has been used to source assessments. I welcome that but we need to use every possible avenue to ensure urgent access to assessment of need, AON, and to services. I am hearing from families who are receiving service plans outlining the services their child requires after the AON has been carried out, with no service date. It is that far ahead in the future that they cannot even be given a date.

We have a lot of people from other countries coming into this country, in particular from Ukraine. Has a skill set been established of those people? Have we found out what their skills are and how many might be qualified in the areas we need within the CNDTs? Maybe with a little bit of work, if their qualifications need a bit more to meet the qualifications required here, they could work in those CDNTs. I do not think that has been done.

The Disability Act 2005 was specifically designed to advance participation of disabled people in society, both by improving access to mainstream public services and supporting the provision of special service where required. Given the developments within the Irish landscape since its enactment, such as the adoption of the UN Convention on the Rights of Persons with Disabilities, a review of the Act should be undertaken to update it and to encompass a rights-based approach to disability. That view has been expressed by the National Disability Authority, many disability groups have made similar calls, and several committees including the Joint Committee on Children, Equality, Disability, Integration and Youth, the Joint Committee on Disability Matters, and the Joint Committee on Autism have all called for that Act to be reviewed. It could and should have taken place in tandem with a review of the Education for Persons with Special Educational Needs Act 2004. Those pieces of legislation were originally drafted to operate in a joined-up way and this needs to be reflected in any reviews.

Sinn Féin committed in its previous alternative budgets to develop and implement an autism plan and a new carers strategy as priorities and it will do that.

Photo of Mairead FarrellMairead Farrell (Galway West, Sinn Fein)
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Ba mhaith liom mo bhuíochas a ghabháil le Páirtí an Lucht Oibre as an rún seo a chur chun cinn inniu. I would like to raise a number of issues. First, Ability West which provides services for people with disabilities in Galway has had to temporarily close a respite centre due to staffing issues. We are now entering the third month that it has been unable to facilitate respite care for service users. This is, of course, a vital service for people with disabilities and their families. Currently, the HSE is advising that there is no timeline for the reopening of the service.

The second issue is in relation to support staff such as speech therapists, physiotherapists, and occupational therapists who work with children with disabilities. We hear all the time about the recruitment and retention issues that are at play across the health sector. We have been hearing about it for years but we also need to think about what we are actually doing about it. I am friends with a number of qualified healthcare workers who would love to be able to build a life in Ireland but they are finding that they cannot get stable, well-paid work at home. They can get that abroad but they just cannot get that full-time work here. Once we have these workers, we need to make sure there is that joined-up thinking around delivering their expertise where it is needed.

I met recently with a parent of an autistic child who is in an autistic spectrum disorder, ASD, class with four other children in Connemara. This child has had to reduce his hours in school because of the lack of available supports. The CDNT has vacancies for occupational therapists, speech therapists and a dietician. In terms of the situation on the ground with these services, a speech therapist travelled to work with one of the children in the class in the middle of Connemara in one day. They then returned a number of weeks later to work with a different child. A far more productive use of that therapist's time would be to accommodate multiple children in the one visit rather than spending that time in the car between Galway city and Connemara. Sometimes there is that lack of joined-up thinking. This class includes three non-verbal children so they really need that support. This would be a massive opportunity for the children to engage with the therapist and move forward in their speech development.

Photo of Louise O'ReillyLouise O'Reilly (Dublin Fingal, Sinn Fein)
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I want to say a brief word about the workers who are working in the area of children's disability. They trained to help kids. They trained to work with families. They spend their entire day firefighting and saying "No". They know the kids need the services and that, in many cases, they have the skills to deliver those services but their time is entirely taken up with saying "No", telling people they are on a different list, that they should move to a different area, or that maybe something will happen this time next year. As someone said to one parent in my area, "You can send in the assessment if you like and we will put it in a file". That is demoralising for everyone in that scenario; for the parent and for the worker.

I want to talk about a 16-year-old boy who lives in my constituency. He is autistic and suffers with crippling anxiety. This child has hurt himself and has smashed his head into walls. It recently took four men to restrain him and prevent him from hurting himself or others. Just for a moment, we should pause and imagine what it must have been like for his mam and dad to share that with their local Deputy. Nobody wants to do that.

Nobody wants to have to open their heart and lay their family life bare just to get a basic level of service. This child was taken to hospital in an ambulance. He was refused at Beaumont and sent to Crumlin. The family has tried to get a referral to Linn Dara, but it cannot take him. There is a place in Kildare, they understand, but there is an issue around funding. He has now been referred to St. Joseph's in St. Vincent's but the family has heard nothing back and does not know what is happening.

I am trying to be discreet and do not want to give too many details but, as has been outlined, there are so many families and kids in this situation you could not pick them out. That is how bad it is. It is nearly commonplace. This child is occupying a bed in an acute hospital. He does not need to be there. It is heightening his anxiety, making him upset and destroying his family. Please can we look at getting services into areas like mine? We have the youngest and fastest growing population, yet the CDNT service tells me there is a waiting list of 1,000 people.

10:42 am

Photo of Pat BuckleyPat Buckley (Cork East, Sinn Fein)
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I thank the Labour Party for tabling this motion. Going to the High Court to fight for assessments of need for your children in 2023 is not on. I recently heard from a family that had to go to the High Court. As many speakers said, it is embarrassing for families to give their personal details or their children’s details. I read those reports. It went to the High Court but the HSE decided if it changed the assessment of needs the process would start again. The case was dismissed and the family have gone back to stage one. A new assessment of needs will take four or five years. It is stalling.

While in the Chamber I received a phone call. I will check up on it after but it is bonkers. A family in Tipperary received a letter this morning for their one-year-old child on an assessment of need and is told the appointment will be in 2028. That is how bad the situation is.

We were at the autism committee yesterday and the Minister of State, Deputy Butler, said there were more than 700 vacancies within disability services. That is a major problem straightaway. People spoke of recruitment and retention in section 38s and 39s. The Government needs to start paying and valuing people in the service.

The programme for Government commits to extending the remit for the NTPF. I am not a lover of that because I cannot understand how we have to outsource it to other people when we should be bringing those in to cover those services. In 2017, I sat on the disability committee with Caoimhghín Ó Caoláin, who does savage work on this, listening to families of those in their early teens who have autism and who kick off in the family homes. I met with families in the committee rooms who said they had to put these people into what is basically an Alsatian cage for the child’s protection and that of the family. That is still happening today. That has to be addressed as soon as possible because we are failing people. It is causing savage stress on families and it has to move on.

Photo of Rose Conway-WalshRose Conway-Walsh (Mayo, Sinn Fein)
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I thank the Labour Party for tabling this motion but I really despair. I was in the Seanad for four years and I have been here for two years. Year after year we table motions and talk and talk about things. Like many families in this country, I have a relative and family member who is autistic. He is 23 and I cannot see the changes that are made. I talk daily to parents of autistic children, including adult children, and they experience the same thing we experienced 23 years ago. Things do not change. While there is lots of talk and it is said there is lots of money there, the system works against people all the time. Whether the assessment delays, the multi-year waiting lists for therapies, the lack of access to education supports and to appropriate school places, it is all the same and it is all impacting on families.

Either successive governments are not capable of providing supports and services for children and adults with autism, or they are. It seems they are not. There is no joined-up thinking. When it comes to, say, financial supports, crazy questions are asked. Applicants are asked if their son will still be autistic in 16 years' time. As late as yesterday, I saw a form the doctor had to fill out to predict whether the child would be autistic in 18 years' time. It is crazy. Do these people not know what parents have to go through? Getting the diagnosis is where the battle starts. There is a battle to get the diagnosis and then a battle all the way through.

It has to stop on our watch. It cannot go on any longer that parents and families are being put through what they are being put through just because their child is neurodiverse, has additional needs or has needs that need to be met. It is a shame on us that we have not done that and it is a shame on successive governments.

Photo of Donnchadh Ó LaoghaireDonnchadh Ó Laoghaire (Cork South Central, Sinn Fein)
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Ba mhaith liom tréaslú le baill Pháirtí an Lucht Oibre. Tá siad tar éis rún den saghas seo a chur chun cinn cúpla uair agus is luachmhar an rud atá ann. It is hard not to feel I am repeating what others have said. If you take the part of the motion on disabilities, you could speak for an hour. If you take the part about autism, you could speak for another hour. If you take all the parts of it together, you could easily speak for 20 hours about the stories we have heard and the experiences we have.

It has been said before but the fundamental truth is parents are exhausted from having to fight for every inch. Every service has to be fought for, followed up and chased. Nothing comes easy, even the most straightforward things. The way things are, particularly with some of the changes made, there is a feeling that no part of the system works properly, whether the CDNTs, school places, access to therapists or even necessary equipment, which you would imagine would be relatively straightforward but it is not.

A woman contacted my office recently about her son, who is five. She needs to get him into a special school. He is in a special class. The CDNTs have advised her that is not the best place for him but she cannot get him into a special school without a cognitive assessment. She has been trying to get one but to no avail and cannot be told the waiting time. She does not know when an assessment might happen.

Another mother was in contact about her son, who has had no key worker for the past year. He needs a specialised buggy, going back to the equipment issue. She talked to her occupational therapist about this. She had to request an appointment for this and has not heard anything since. Only recently, after a year of emails after emails and fighting for a fundamental requirement for the child, she was able to get a buggy.

I am also in contact with a family whose child has been refused a place in four special schools ahead of the upcoming academic year. This five-year-old is non-verbal and requires a walking frame as they cannot walk independently. Two of the four schools are oversubscribed. Another said the child’s diagnosis is not profound enough and another said the disability does not fit the criteria. It is a scandal that these keep arising.

Photo of Mark WardMark Ward (Dublin Mid West, Sinn Fein)
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I thank the Labour Party for allowing me the opportunity to speak on the challenges people with autism face. I did not get time to speak on this until this morning. I did my research this morning and could easily speak the same words I spoke this time last year because not much has changed.

I commend the parents and campaign groups on all the work they do and welcome the groups to the Gallery. I want to mention a group in my area, the Clondalkin autism parents support network. Groups and parents should not have to fight to meet their children’s basic needs. They should not have to fight for appropriate school places for their children in their own communities. They should not have to fight to make sure their children are part of the school community and not apart from it. They should not have to fight so their children can reach their full potential, but fight they must.

I welcome a positive initiative by the Houses of the Oireachtas in relation to Leinster House becoming an autism-friendly space by the end of this year. Deputy Buckley and I took part in the training recently.

I urge all Members to take part in it. It was really worthwhile.

I will go back to the subject I started on. The Government has failed children with disabilities in accessing timely services. In fact, despite warnings from the Opposition, and not just from Sinn Féin but right across the board, the Government broke the law by bypassing the comprehensive assessments of needs and replacing them with a preliminary team assessment. This is contrary to the Disability Act.

Parents are sick and tired of the response, that I send to them after I get it from the HSE, blaming the delay in their child getting a vital assessment of need on the backlog. This backlog has been created by the fact that the HSE and the Government broke the law. I and others stood in this Chamber last year and the year before when the HSE was introducing this preliminary team assessment to replace the comprehensive assessment of need and we warned that we would be in breach of the Disability Act. The Government ignored this and, to date, nobody has been held to account. We must get away from the scenario where children are being moved from list to list, without getting the necessary intervention at the end of it.

10:52 am

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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First, I thank the Labour Party and Deputy Duncan Smith for tabling this very important motion. I welcome the opportunity to speak about children’s autism and disability services. It is also a sign of a failed Government policy that we are having another motion on this topic. Opposition parties keep having to table motions on disability services and, in particular, on children’s services.

Parents of children and adults with disabilities are one of the groups I meet most frequently, and I think all Deputies will also say this. They are often the most at their wits’ end, beyond angry and frustrated and all they actually want is the basic services their child is entitled to. It is literally the bare minimum. Under the United Nations Convention on the Rights of Persons with Disabilities, each child has the right to appropriate healthcare, education and supports that will help them live independent lives in the community. Moreover, therapeutic interventions are crucial for children and they can be life-transforming. That is why this is such a significant and emotive issue. Parents and families know the difference timely therapies can make. We all know the importance of early intervention.

Another motion on this topic is necessary because this area is too important to let it slip. I accept that the Minister is pushing for change, but this needs to be a priority for all of the Government, the Department of Health, the Department of Children, Equality, Disability, Integration and Youth and the HSE. The recent report by Families Unite for Services and Support, FUSS, which Members will know, has key points that are extremely relevant to this discussion. Its survey of parents, carers, guardians, clinicians and therapists revealed that 97% identified staffing recruitment and retention as a vital threat to the success of service provision. Disability services have been described as disjointed, diluted and clinically unsafe for staff and users. These findings are stark, but they are also unsurprising. There has been report after report after report from disability organisations which have had similar results. For example, a survey by AsIAm from two years ago found that 54% of respondents felt very dissatisfied with the support services from the HSE for their autistic children, with as many as 65% going on to express dissatisfaction with the broader disability services.

The progressing disability services programme is currently not working and there is no other way of saying it. There are more than 4,600 children on waiting lists for assessments of need and over 10,000 waiting over 12 months for initial contact with a children's disability network team, CDNT. There is also the issue of geographic lotteries, with considerable variations in services, service qualities and waiting lists. To give one example, figures from December show that CHO 4, the Cork and Kerry region, has a list of 1,488 children who have been waiting over 12 months for initial contact, while in this category it was 186 for the northwest area and 80 for Mayo, Galway and Roscommon.

There are also the larger differences at a local level, with the CDNT for Carrigaline, Kinsale and Bandon having the largest waiting list in the Cork and Kerry region at 331 in total, with 316 children waiting more than a year. In contrast, the west Cork team had a waiting list of ten, all of whom were only waiting for under 3 months. None of this is the fault of individual teams. The clinicians, therapists and others on these teams are doing everything they can. Staffing is the issue that comes up every time. Teams are not fully staffed, and even if they were, the waiting lists are so bad in many areas you are going to have to hire more clinicians to clear the backlog. The last time we heard about this at the disability committee, not one of the 91 CDNTs in the country was fully staffed. I have consistently raised this matter with the Minister, at the Joint Committee on Children, Equality, Disability, Integration and Youth, at the Committee on Disability Matters and through parliamentary questions. I have encouraged the Minister and the HSE to look at different ways of recruiting staff.

Staff are also deeply frustrated and demoralised. One of the respondents to the FUSS survey explained:

Vacancies are too long empty and it's just a revolving door. In order to progress you've to leave your post. I'm just waiting for something to come up so I can leave.

Of course, therefore, frontline staff are burning out, transferring or going into private practice. As an example of how this could be addressed, there is persistent inequity of how the section 39 organisation staff are treated. How can anyone believe the attempt is meaningful enough to address staffing issues when they continue to be denied pay parity? They have exactly the same working conditions as other people, but they do not have parity with jobs in the HSE.

We have identified that the staffing issue is the main cause at the disability committee, the children's committee and at the AV Room events. This is always what it boils down to. There is a concrete action that can be taken that is a drop in the ocean of the Government's budget, but it is not being taken. The Social Democrats, in our alternative budget, proposed to increase the allocation for section 39 organisations, Tusla-funded section 56 organisations, and section 10 homeless services by a total of €80 million as a first step in addressing this disparity. These issues start even earlier in healthcare professionals’ careers. Nurses are paid shockingly little for their placements in hospitals, but the situation is even worse for therapists, psychologists and others. I have raised this point with the Minister, Deputy Donnelly, repeatedly. The Government has to understand that the key to ensuring young people want to work in the Irish healthcare system is in valuing them from day one.

I welcome the motion’s inclusion of the disability payment in the next budget. Last July, the Social Democrats had a motion calling for an increase of at least €20 per week as a very first step in addressing the costs of having a disability in Ireland and to increase the disability allowance by at least €15 per week. That is a total of €35. Instead, the Government gave €12 more on core welfare payments and several once-off payments. While these provided some help, they did little to address the long-term systemic issues faced by disabled people. A one-off payment for a disability is insulting, because, in the vast majority of cases, it is a matter of 365 days of the year. It is acknowledging it costs more, but only acknowledging it for a day.

The Government’s own report, The Cost of Disability in Ireland, revealed that people with disabilities face up to €12,300 extra costs annually on transport, fuel, equipment aids, medical expenses and much more. Additionally, this report was published before the current cost-of-living crisis. There is a substantial additional cost to living with a disability in Ireland. This impacts an individual’s and family’s quality of life and their future prospects. Most significantly, the social model of disability shows that this is a constructed barrier - Government policies and society make it more expensive to have a disability. It is up to the Government to adjust that by providing a comprehensive and long-lasting solution.

Government kite-flying about the budget has already begun. Before any tax cut is even considered, there should be a firm commitment to providing a permanent cost of disability payment and to funding the massive staff shortages in disability services and healthcare more broadly. Similarly, the motion mentions the need to review the carers' allowance and other income supports-----

Photo of Verona MurphyVerona Murphy (Wexford, Independent)
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I thank the Deputy. We move now-----

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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I could go on-----

Photo of Verona MurphyVerona Murphy (Wexford, Independent)
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No. Your time is up.

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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There are so many issues. This is even before children's schools places-----

Photo of Verona MurphyVerona Murphy (Wexford, Independent)
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I thank the Deputy. We are moving on to People Before Profit-Solidarity and Deputy Paul Murphy.

Photo of Holly CairnsHolly Cairns (Cork South West, Social Democrats)
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We do not get to any of the other things. We need an all-of-government approach to this.

Photo of Verona MurphyVerona Murphy (Wexford, Independent)
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Is Deputy Paul Murphy sharing his time with Deputy Gino Kenny?

Photo of Paul MurphyPaul Murphy (Dublin South West, RISE)
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If he arrives I will be. First, I thank the Labour Party for tabling this motion. It is an indication of the scale of the crisis that we have, that Opposition parties repeatedly have to table motions to address these issues.

Unfortunately, the statistics contained in the motions get worse rather than better as we have motion after motion. Rarely, thankfully, does the Government oppose a motion. Normally it accepts them, agrees with them and says it would like them to happen but then the situation continues to worsen. The bottom line is that it is a national scandal that more than 100,000 children are on waiting lists for some form of disability assistance, intervention or occupational therapy. That is an incredible number of people. That number of children means close to 100,000 families are impacted. They are set for multi-year waits in most cases. They are going to be on waiting lists, waiting for services their children desperately need and waiting for years before they get them.

What always gets me when discussing these issues is that the State pays lip service to the idea of early intervention. The science behind it is impeccable. Obviously it makes sense to intervene as soon as possible. That has real impacts on outcomes. However, the State pays lip service to early intervention and then allows children to languish on waiting lists for years, without getting the assistance and interventions they need, and their conditions may worsen as a consequence. That is a scandal anywhere but especially so in one of the richest countries in the world when today we have lawyers paid for by the public, by the same families who are on these waiting lists, fighting so that Ireland will not receive tax from one of the biggest corporations in the world. It speaks to the priorities of this State.

The report by FUSS Ireland to which Deputy Cairns referred is important. The work that FUSS has been doing is excellent. It was the disability rights movement that came up with the slogan “nothing about us without us”, fighting so that the voices of those affected are brought to the centre of any decision making. The work of organisations such as FUSS Ireland and other campaigners always impresses me. Those people have enough going on in their lives and have enough stresses in their personal and family lives in trying to get what their children need, yet some of them find the time and have no choice but to stand outside the Dáil and to produce comprehensive reports to try to get national policy changed in the direction we need. The report, Thoughts and Experiences of PDS, which is the new national programme, is striking. The bottom line is that 97% of respondents identified staffing, recruitment and retention as vital threats to the success of service provision. We can move around the pieces this way or that, but as long as there are not enough resources and as long as we do not employ enough staff to help children, we will have significant problems. That is the bottom line point. Furthermore, 45% of respondents agreed that staff pay and conditions play a major role in the inability of PDS to retain its current staff and entice more to join the workforce, while 80% of respondents believe the PDS model and subsequent reconfigurations failed and 16% remain unsure. A sentence in the foreword sums it up: "The lack of funding, the lack of political will to drive change and ultimately the absence of accountability for multiple generations of children who have been failed by their government." Those are the themes that echo throughout this report and throughout the experience of families who have to deal with this system.

Reading the quotes from children, families and workers affected it is striking. I will give a couple of examples to give a picture of it:

We are sitting languishing on a list - I have been able to access SLT and OT privately - I am paying €90 per week for SLT, OT assessment alone was €350. Awaiting private psychology assessment in June which will cost €1500. I have 4 children, Costs are high, I feel like we are absolutely killing ourselves to give our child the best chance in life. Barely contact from HSE, they don’t give me any confidence or hope for a service.

Another quote:

I feel we have been sold a total lie. The policies, procedures, and guidelines about how the services should be run on CDNTs is disingenuous, given that there isn't a team in the country that is anywhere near adequately staffed. I have been working as a clinician in Ireland and abroad for 15 years and have never encountered such a poor staff to child/young person ratio, and to think this is in a service for children with identified complex needs is outrageous. It is so disheartening as clinicians and CDNMs as we keep raising all the risks but seem to be getting no traction.

Another quote later is particularly telling in regard to the downward vicious cycle for the workers in these services. The point was made by many speakers that these workers got into this area to help children but they are faced with this nightmare situation. As one person said:

Workload insane. And no hope of any improvement. Can't interact with families as often as I'd like as its crisis management. Yes health negatively impacted suffering from burnout stress and recent onset of depression - myself and colleagues cry in work frequently as its all just negative experiences. The model works if there's resources to run it, I'd hate for it to be abandoned altogether without it having ever been given a chance but feel like families will never believe in it now.

There is quote after quote from both sides of the experience telling us what the reality is. That is the bottom line. What comes through is the whole question of resources.

I wish to deal with the question of education. I believe that is another aspect of this national scandal. The Ombudsman for Children highlighted a year ago what he described as the State failing children with special needs. This farcical but also outrageous situation persists. Every morning across Dublin city and throughout the State, children in one part of the city get into taxis to be driven to another part of the city or in some cases another county to access the educational services they need. It makes no sense whatsoever. It is not the best for children who deserve to be educated in their local communities and local schools. For example, in Tallaght we have 17 primary schools with special classes. However, in secondary schools we only have two. This leads to a situation where people graduate from primary school and literally have nowhere to go. They are forced to go outside their areas.

11:02 am

Photo of Seán CanneySeán Canney (Galway East, Independent)
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I welcome the opportunity to speak and compliment those who brought forward this motion. As a member of the Committee on Disability Matters, I have been listening for two and a half years to a litany of complaints from service users with the lived experience of disabilities. They bare their souls in public before the committee. It is not pretty. The courage and determination they show is great but all we are giving them is just platitudes, telling them they are great and brave to do what they are doing. What is wrong is we have such a complex problem and a variety of issues that it is hard to know where to start and how to start. When the elephant is so big, how do we eat it when it is only one piece at a time. I know the Minister is working on that. Some things touch my heart. When a parent contacts me to say his or her child received an assessment and is attending a speech and language therapist but that therapist is going on maternity leave so the child is going back on the waiting list. That has to stop. I do not who is responsible for it but we need to be able to backfill places when people go on maternity leave, which they are quite entitled to do.

There is also an issue whereby clinicians do the paperwork but do not have the backup of administrative people to enable a bigger throughput of people through the system. These are simple operational things that need to be done.

I listened to the radio programme “Liveline” yesterday on my way to Dublin. I do not know who hosted it. On air was a mother who said she is afraid of dying, not because she fears death but because she fears for what will happen with her child when she passes away.

She said she will feel she has failed her child if she passes away and the problem is unsolved and he does not have a care plan. It is damning that a mother is living like that and is afraid she has failed her child and he will not be taken care of when she passes away.

I received a phone call this morning from the elderly parents of a constituent who has Down's syndrome and several other issues. The parents are in their 70s. They are getting three hours a week home care for a 47-year-old man who has multiple problems, including sight issues, epilepsy and other matters. That is not right in this day and age.

The committee discussed previously the cost of a disability and the cost of living with a disability. Yesterday, the Taoiseach was talking about what he will put into the budget. My ask of the Minister of State, Deputy Rabbitte, and the Minister, Deputy O'Gorman, who are present, is for a disability allowance that will include additional moneys for people with a disability to meet the additional cost of living they have. I will bring pressure to bear in seeking that. This is not about the regular cost of living; it is about the cost of living with a disability. I hope that, through the Oireachtas Joint Committee on Disability Matters and the Department, we will be able to put in place a scheme that will start this year to get that budget going over a number of years. The Indecon report states that the additional cost of living with a disability is in excess of €9,000.

A few weeks ago, the Regional Group tabled a motion on transport costs and supports for people with disabilities. Work is being done on that issue but Peter Tyndall highlighted it as urgent in his report, Grounded - Unequal Access for People with Disabilities to Personal Transport Schemes, and that report was published three years ago. The State dispensed with transport schemes more than ten or 12 years ago and they have not been replaced. That is a shame on us all.

I refer to the report published by FUSS Ireland and based on surveys it carried out. It found that 80% of respondents believe the PDS model and reconfiguration of services has failed. These are people with lived experience. Of the respondents, 72% believed there was a lack of accountability on behalf of HSE management. Disability services were described as disjointed, diluted and clinically unsafe for staff and users. A call for specialists and cohesive interagency working echoes throughout the replies. The report contains direct quotes from staff and service users. I understand the Minister, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte, have met with FUSS Ireland to discuss the report. It is from people who have experience of this issue. It was not produced by analysts at computers or whatever. These are people who are living with this issue. One respondent stated, "Literally nobody tells me as the parent a thing I’m having to fish information out and mostly getting help from other parents." When parents find out their child has been assessed and has a condition, it takes them a lot of time to come to terms with that fact. They have to look after their other children, if they have any, and keep life normal at the same time as they face all of the anxiousness relating to trying to get services for their child. They do not know where to go or what to do. The penal thing is the time they are left waiting without a response. They are not told anything but, rather, are left in a haze. That is when people come to us, as public representatives. They are frustrated. They break down in the constituency offices of Deputies throughout the country. They are upset because there is no proper plan or pathway. People whose children go for an assessment should be assigned case workers whom they can contact if they have any queries, recognising that their children are the most important thing to them. That is lacking in the system. Children are precious and everything possible needs to be done to ensure they get the best possible treatment while they are under the care of the services. I encourage the Ministers to take that on board.

11:12 am

Photo of Mattie McGrathMattie McGrath (Tipperary, Independent)
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Ar an gcéad dul síos, I welcome Cara Darmody, who is such an advocate for her brothers and all children with autism and other disabilities. I also welcome her dad, Mark, as well as Catherine Cox of Family Carers Ireland.

I welcome the motion and thank the Labour Party for tabling it. The figures referenced in the motion are stark. I do not want to repeat figures that have already been read out but the numbers are enormous and a shame. Children are placed on never-ending waiting lists with no communication. They are left to the winds. It is not fair. There is a revolving door, with staff, including therapists and managers, leaving as quickly as they are recruited. There is no accountability or response from senior management, let alone from the Ministers or the Department of Health.

There are 1,100 children between the two teams in Cashel and Clonmel in south Tipperary. The CDNTs in south Tipperary are operating on a skeleton staff. It is shocking. My late brother, Eddie, was a paediatrician of some renown. He is dead 15 years now, God rest him. There were huge problems in the system when he was practising but it has deteriorated badly since then. Cara Darmody has come out of school and will sit a leaving certificate exam this year. Yvonne met her, as did all the groups and parties. Cara should not have to do that to raise awareness and funds for valuable resources for schools in Cashel and Ardfinnan, however.

When are we going to wake up? The waste in the HSE is exorbitant. Look at the amount paid to consultants at Cork University Hospital, for example. Money was fired around during Covid and can be found for refugees but there is no money to look after children with special needs. Families should not have to come to the constituency offices of Deputies to tell their life stories and share their emotions. It is nothing short of disgraceful but the Government does not seem to care.

Photo of Michael CollinsMichael Collins (Cork South West, Independent)
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Disability services for adults and children are severely lacking across the entire country, nowhere more so than in rural communities in my constituency of Cork West. A lack of psychological, occupational therapy, OT, speech and language, home support, respite and residential care services are some of the problems faced by my constituents year in, year out. The occupational therapist in the Bantry area only works three days a week and her enormous workload allows her to see only the most urgent cases, known as priority 1. In Skibbereen, children with disabilities have had no access to an OT service since October 2022. There are no OTs available on a private basis in the area, which compounds the issue even further.

Respite for carers is another significant issue in Cork West. One of my constituents, a single mother with a 14-year-old boy who has severe intellectual and physical disabilities, is wheelchair-bound and has to be lifted and carried everywhere and is totally dependent, told me she has not had a full day off in a year. She has been appealing for residential respite but she has not yet been able to avail of the service. An elderly couple on the Beara Peninsula whose son is profoundly intellectually and physically disabled have no home support at weekends. The 69-year-old mother told me she gets €137 a week carer's allowance for providing 24-7 care for her son. At weekends, she has to employ private help to lift him into and out of bed, change his clothes and so on, and that costs her €160 for eight hours of help. This is a disgrace. It is upsetting that elderly parents of adult children with disabilities for whom they can no longer care safely in their home cannot get them a place in long-term residential care. It is shocking that services have come to this.

Photo of Carol NolanCarol Nolan (Laois-Offaly, Independent)
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These are extremely important issues we are debating. All Members have heard from desperate parents and teachers throughout the country who are calling for access to basic services for children with disabilities and autism.

I want to highlight in particular the four-year delay to works for an approved autism unit at St. Brendan's Community School in Birr, County Offaly in my constituency. I have made representations to the Minister for Education, Deputy Foley, but I am aware there have been more delays and lack of engagement by the Department. The Department has not engaged fully with the school. In March the principal and the school had a productive meeting with Department officials. For once, they actually felt they were being listened to. However, there are still issues regarding budgetary confinements. The autism spectrum disorder, ASD, unit, was originally granted at €2 million, and the glazing project for the school was to be €2.5 million. Due to conservation and architecture requirements, inflation and delay costs, the overall cost of both projects is now around €12 million, which is not the fault of the school. Had the delays not occurred, the school would have had this work carried out long ago, which should have been the case.

Whatever happens with the ASD unit, there are still major health and safety concerns outstanding. There were minor works to be carried out. There is inadequate heating, poor ventilation, unsafe CO2 levels, inadequate existing ASD classes, and a leaking roof and glazing which allow almost all of the heating to leave the building. The current heating and electricity bills are totally unsustainable and the school's electricity costs for three months is almost €40,000. The school, which was awarded DEIS status last year, has seen its disadvantage continue in that school community and cannot even operate properly without a functioning heating system. The Minister will agree this is not acceptable and that it is totally outside the control of the school. I ask that the Minister would bring the case of St. Brendan's Community School in Birr to a speedy conclusion and I would be grateful for any help the Minister can give.

11:22 am

Photo of Danny Healy-RaeDanny Healy-Rae (Kerry, Independent)
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I thank the Labour Party for bringing this motion and giving us the opportunity to discuss this important matter here in the Chamber this morning.

There is nothing to top the joy of a newborn baby for a couple when they are lucky enough for that to happen. When something is wrong, however, and they discover that something is not right with the child, it can be a really big problem and, in some cases, it is a burden they must carry all of their lives until they depart from this life, and they must wonder what will happen to their son or their daughter. That is a big worry for those people.

The figures here are massive and it must be treated as an emergency. I am aware that some months ago I asked the Minister of State, Deputy Rabbitte, about this. We need to find out what is the cause of the increase in these levels of autism problems. We are not helping people. There are delays for assessments and for all of the therapies. We just do not have enough people. This is an important enough debate to have the senior Minister here, but he would rather be putting labels on bottles. That is his priority to write his name into history. Our priority is to deal with this issue. It is a serious matter. We must come to grips with it by providing enough help for those couples who have children with different developmental issues. We certainly need to get them assessed in time. It has been proven that those who are assessed and those who are helped may have a normal life. We need to do a lot of work in this regard and we need to get cracking.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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Just for the information of House, we do have the senior Minister present, together with the Minister of State. We are well served today.

Photo of Joan CollinsJoan Collins (Dublin South Central, Independents 4 Change)
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I welcome the debate on the issue of services in autism disabilities. I thank the Labour Party for bringing forward this motion today, giving us the opportunity to discuss it. I wish to read into the Official Report part of the contribution by Mr. Adam Harris from AsIAm to the Oireachtas Joint Committee on Autism on 16 May 2023. He encompasses a lot of the issues we have discussed:

Many members of our community can point to numerous policy initiatives over the years that were promising and that reflected community priorities but that sadly simply never became reality. They became reports gathering dust on shelves ... The strongest tool to at least monitor implementation would be the passage of legislation along the lines of Malta’s autism empowerment Act from 2016. To be clear, the latter is not designed to address every issue facing the autistic community, nor is it designed to create a new schedule of rights for autistic people over and above what exists for other disabled people.

This legislation would simply require the State to publish an autism strategy at regular intervals, to involve autistic people in the process of drafting and monitoring the implementation of the strategy and to require the relevant Minister of the day to report on progress annually. We know it is not uncommon for the State to have overarching strategies for broad policy areas, with specific strategies or focuses where they are clearly required. [For example, Sláintecare does not prevent the publication of a national cancer strategy.]

It is reassuring for us to see the broad political support at present for a national autism strategy, and the work of the Minister of State, Deputy Rabbitte, in the promised forthcoming autism innovation strategy ... [but] we know it has faced significant opposition from Government Departments in the past and we are concerned that a general election could see this go right back to day one unless it is protected by legislation. We also know there is strong support for this within the general public, with 75% of the Irish public answering "Yes" to the question “Ireland should have a law in place to ensure we have a National Autism Strategy”. Unsurprisingly, 96% of autistic people share these views.


We are conscious that several important pieces of work are taking place, including the Government’s forthcoming autism innovation strategy and the HSE's autism programme board, which is based on the HSE review of autism services in 2017. It is important that the committee consider these two pieces of work in any recommendations it might make so as to avoid conflicting plans or a watering down of any solutions.


[On human rights compliance] AsIAm welcomes the recommendation of the Oireachtas Committee on Disability Matters on behaviour-based approaches, which have caused much harm to many in our community. We would also point out the large number of so-called therapies and therapists that operate in the field of autism that are not regulated and which practices have no scientific basis. This poses a waste of resources for families at best and exposes autistic children and adults to significant risk of harm at worst.

Mr. Harris noted that the failure of the State to protect the term of "psychologist" and to provide formal guidelines for autism assessments continue to expose community members to inexcusable harm. AsIAm does not agree with educators filling out the education section of the assessment of needs and says it may face challenge in the courts in the future. It fears a conflict of interest among educators. Mr. Harris went on, "We ask that the committee's recommendations place a strong emphasis on all supports for autistic people funded by the State being evidence-based and human rights-compliant." AsIAm also asks that stringent regulation of therapies and practices in this sector are drafted and implemented.

Mr. Harris added:

To achieve an equitable Ireland for autistic people, two distinct ranges of actions are required. First, we need timely and effective autism-specific supports, such as access to assessment, therapies and educational services. Second, we need to autism-proof every aspect of Irish society, particularly all public services, to ensure autistic people have parity of access to supports such as healthcare, social protection, employment and housing.

Mr. Harris also spoke about the role of community, which is a very important point. I am involved with and in contact with parents’ organisations in our communities in Crumlin, Dublin 12, in Bluebell, in Ballyfermot, and all around the country. These groups should be recognised. They are the ones that have strengthened the autism community. Mr. Harris said:

Most of these groups operate on a shoestring or have little to no funding. We would like to see ... [this addressed] and support [for] the development of autistic-led groups across the country, while ensuring every area also has access to ... [a] parent support group.

It is important to bring that into the discussion and maybe get the Minister of State's response to it. We have a scandalous situation whereby children and parents who are entitled to assessments of need and education are not meeting their full potential. It is a Third-World service in a First-World country. We have to recognise that. Even yesterday, and was mentioned earlier, when the Minister of State was before the Joint Committee on Autism, it seemed there was no amount of money she does not have to create new jobs. She made the point that in HSE disability services, there was funding for 190 posts in budget 2022, while budget 2023 contains provision for a further 136 posts to provide services and 104 special schools. However, the Minister of State then went on to say that there was an average vacancy rate of 34% across CHOs, which equates to approximately 700 full-time jobs, although she also stated there were full-time equivalents. However, the fact is that the high vacancy rate means we cannot deliver services. That is the crux of the problem.

The point was made that there is a 40% vacancy rate for occupational therapists, in addition to vacancy rates of 39% for psychologists, 28% for social workers, and 29% in nursing. We cannot deliver the service these people need. A radical approach has to be taken to this. I will make a point about international recruitment. There is a conflict of interest in that regard as it takes professional staff away from countries that need them, such as India and Third World countries, and they are then not given proper wages for jobs in this country. Yesterday, we made the point that nurses and healthcare assistants are being brought over to work in private nursing homes at a rate of pay of €27,000. They cannot bring their families here. When we bring workers over, first, their conditions and pay have to be protected and, second, we now have to start giving scholarships across the board in certain areas, such as therapies and nursing, to bring people into training. We should then get them to pledge to stay in the country for a number of years to backfill the CDNTs and the areas where there are vacancies.

11:32 am

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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I thank the Labour Party for tabling the motion. I acknowledge Deputies' support of me in my role as Minister of State with responsibility for disability, and the Minister, Deputy O'Gorman, who has been present for the entire duration of this debate to support me.

On reflection, I went over my diary to see how I spent the past month to colour and put in context what I am doing behind the scenes. I met with FUSS Ireland, AsIAm, Mr. Bernard Gloster, nine disability managers - that was nine separate meetings - and all the leads of CHO 4. I met eight times with departmental officials, Mr. Bernard O'Regan and Ms Yvonne O'Neill, also in the past month, with the Taoiseach and the Minister, to set our priorities for the upcoming budget, and individually with numerous Deputies regarding the issues they bring before me. As they will now be aware, I have focused a lot of energy over recent months on increased investment into disability capital budgets which, outside de-congregation, have been lacking. Deputy Kelly was instrumental in ensuring that St. Otteran's Hospital was in the capital plan when he was on this side of the House. It remains there, believe it or not, but is still at appraisal stage and not moving.

We know many of our services are near capacity so increased investment in supports and services that will ease pressure on families is crucial. I have learned over recent years that the pace of development of such services has been frustratingly slow. Through my monthly meetings with the nine disability managers throughout the country, the areas in need of investment have become very clear. I have also met with wonderful organisations right around the country that have shown me how they can add capacity to the system to help deliver for families and ease the pressure the HSE is under. These are shovel-ready projects that can add capacity, but I find the current system too clunky to allow for fast delivery. I am working with Mr. Gloster and his team to help deliver on these as soon as possible. I remain optimistic that we will see delivery in this area under his leadership.

When I talk about shovel-ready projects, it is important that I share some of my ideas with Deputies. I mean equine therapy in Kanturk, Sensational Kids in County Kildare, Neurodiversity Ireland in Sandymount and Rainbow Club Cork. They are already supporting kids. Rainbow Club Cork is already supporting 1,150 kids through giving interventions on a weekly basis. It needs more support. I need the HSE to move away from its model of what it believes is working to a more inclusive model of participation in the community. As part of this work, I will hold round-table meetings with providers before the end of this Dáil term to discuss the issues of investment in respite and residential care and how we can deliver more capital projects to boost capacity, as well as what the providers see as the roadblocks to delivery.

Every one of the disability managers tells me that they need and have made applications to the national office for more respite and residential houses. They also talk about the impact of Covid. In CHO 2 alone, there is a need for six residential houses for children under 18 years of age. It is important to say that I make those comments in the context of three large budgets have provided funding for a major upscaling in respite nights available to children. In 2021, there was €5 million in funding for 10,400 additional respite nights either through new services coming on stream or expansion of current assets. In 2022, €9 million saw the establishment of three additional specialised centres, one for Prader-Willi respite care and two others to provide high-support respite for children and young adults with complex support needs. These are expected to provide 4,000 nights. The other seven services will provide 9,408 respite nights in a year. This year, five additional respite services will come on stream, while we will also increase one service from part time to full time to provide 7,800 nights. In all, in the past three budgets, I have delivered 31,000 nights that have been added to the system.

Needless to say, when I listened to Paschal Sheehy's report on RTÉ last Sunday, I was frustrated to hear that ten beds are not in operation. My understanding is there should be no idle bed when we have families in crisis. I have written to the HSE and made an interim suggestion to ensure that we can provide support. I talked to those in the Carrigaline space, in particular, where children do not fall under any particular patronage. I had this conversation with all the leads, to be fair, in CHO 4. I have suggested that CHO 4 needs to immediately stand up agency nursing to staff the ten beds until such time as the providers are allowed the funding to stand up those beds. Whatever rate needs to be paid, those nurses need to be stood up at that rate in order that no family is left in the situations presented here today. The lead agency stated to me that it needed 74 staff immediately. The HSE knows the ask and needs to deliver on that.

Deputy Duncan Smith referenced the list for assessments of need that I believed had been cleared. I did clear it, but it has grown back. The Minister and I have made a proposal to the HSE, where I want a minimum of six regional assessment units stood up. The reason for that is when every child is assessed, there will be round-table liaison that will work together, with somebody from child and adolescent mental health services, primary care and education. We will then be able to find the proper pathways back into where the child needs those services. Those regional assessments will be a combination of public-private to ensure we get a correct delivery of assessment, that the assessment will be liaised on correctly so that the child returns to the proper team, and that we allow the teams that are in place to build up the capacity to make a direct intervention.

If that is not done by 1 August, I will take to budget what the Labour Party has suggested today, that we will fund the families. I am giving the time to the HSE to act on the ask and I am supported by the senior Minister in that.

11:42 am

Photo of Alan KellyAlan Kelly (Tipperary, Labour)
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Well done Minister.

Photo of Seán SherlockSeán Sherlock (Cork East, Labour)
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Well done.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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For once and for all, we must put the parent and child first-----

A Deputy:

Hear, hear.

Photo of Anne RabbitteAnne Rabbitte (Galway East, Fianna Fail)
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-----and that is what I will be doing.

I will hand over to Deputy Moynihan.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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That was a remarkably frank contribution.

Photo of Michael MoynihanMichael Moynihan (Cork North West, Fianna Fail)
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I thank the Minister of State for sharing time and for her forthrightness, the way she has been dealing with the issues across the spectrum and the way she has tackled the system. The system needs to be tackled. There are a number of issues.

As was stated earlier, the capacity in the system needs to be increased. Many of the section 38 and 39 organisations and other voluntary organisations have advanced plans for projects. Funding should be allocated to ensure that shovel ready projects do not need to go through all the system. If projects are ready to go, we must ensure funding follows and that capacity is increased. The Minister of State knows what I am talking about. Many organisations have projects ready to go and they need to be funded. Dillydallying is not needed.

The assessment of needs is one aspect, but early intervention and therapies are needed. Many diagnoses have been made but no therapies are available in the public sector. Each of us as public representatives meet parents on a daily basis who are crying out for services that cannot be obtained. We are duty bound to ensure those services are available and that the teams and system that is being thought up have adequate resources. All available people should be recruited to the teams and be made available to families. The Minister of State's closing remark about putting families first is very welcome. I compliment her on saying it. We must follow through on it because, and I often say it and we keep saying it at our committee - the Vice-Chair of our committee, Deputy Tully, is here - there is an attitude in the system that needs to be changed and challenged in a major way.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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There is just eight minutes remaining.

Photo of Brendan HowlinBrendan Howlin (Wexford, Labour)
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I take it we have ten minutes.

Photo of Seán Ó FearghaílSeán Ó Fearghaíl (Ceann Comhairle; Kildare South, Ceann Comhairle)
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You do not, you have eight minutes.

Photo of Brendan HowlinBrendan Howlin (Wexford, Labour)
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I welcome the fact that the Government is not opposing this comprehensive motion that deals with one of the most pressing health and child development issues facing the country. I welcome the presence of the Minister and Minister of State for the duration of the debate and the frankness and directness of the Minister of State in responding. There is not a single Deputy in this House who has not struggled with the most difficult and harrowing cases of children whose life chances are ebbing away for want of a timely professional assessment of needs and, when that unbelievably high hurdle is finally overcome, adequate and appropriate therapies to allow them to learn and reach their full potential. Parents know the clock is ticking for their precious children. Each passing day and week compounds the children's difficulties and causes unbelievable stress and anguish for the parents. We all know that. We have seen it first hand, as the Minister of State correctly stated. We must solve at least the first part of that problem now. If the public system cannot cope - as is clearly the case - the motion calls for the immediate provision of financial support to parents and caregivers who have no option at present other than to resort to private assessment. As we stated, this can be done by direct reimbursement or through the national treatment purchase fund, NTPF. The Minister of State has made a high commitment, that if it is not done, she will bring it to budget. I hope that Ministers responsible for the budget hear that and that it is done. It absolutely has to be done.

I recognise the second hurdle is difficult to resolve. The establishment of children's disability network teams, CDNTs, has been a wonderful initiative. In each constituency, those teams dealing with children is a marvellous initiative or it would be if the teams existed. However, they do not. The problem is finding the specialised staff required. The list of children waiting for appointments for therapy is simply shocking. There is no other word for it. We are all in touch daily with the administrators of those teams trying to find therapists. Each of the local teams is desperately dealing with waiting lists and trying to recruit. In some instances, the pressure of work is driving out the specialists we have. The situation is actually getting worse because of the stress and pressure those who are working on the teams are under because of a lack of a comprehensive plan for a fully recruited team. We must resolve this recruitment issue and at the same time radically increase the training places and courses for the next generation of specialists.

Let us plan for that now by radically increasing the number of people we are training. We need to take a fundamental look at professional training and registration. We need to remarkably increase the numbers. That is a simple fact. We must remove the barriers to maximising training of those who are needed and to the recruitment of specialists abroad. I will give two brief examples. We have a chronic shortage of nurses and yet nurses who trained and qualified in Queen's University Belfast, no longer have an automatic entitlement to registration with the Nursing and Midwifery Board. I asked a parliamentary question about the issue and was told it is because of Brexit. Those who are trained must go through another series of hoops while Australia is knocking on their doors with all kinds of inducements. We must fix those problems.

I spoke to a dentist last week. We have a chronic shortage of dentists. On recruiting foreign EU dentists, he said that he as an Irish born dentist would not pass the language test to be a dentist in Ireland. Let us resolve those issues and get the specialists we need. I hope this motion will not be just another in the series of three we tabled. Legislation has also be referenced by others. I hope this will be a cathartic day. From what the Minister of State has said, I hope it will be and that there is real hope for those families in desperate need who right now feel that they are crying in the wilderness and are left to deal with their unimaginable burdens alone while they are unanswered by the State.

Photo of Alan KellyAlan Kelly (Tipperary, Labour)
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I thank the Minister and Minister of State for being here today. They are two of the more approachable Ministers. I have said so on the floor of the House before.

The Labour Party is passionate about this issue. We have raised it many times. I acknowledge the work of Deputy Duncan Smith and of our colleague Deputy Ward who is hugely involved. Today I am furious but I am also proud. I am proud to be a Deputy representing Tipperary and the young lady Cara Darmody. The reason we are able to put on so much pressure is the work done by Cara and her father and the wider family on this issue. I recently held a clinic of 16 appointments of which nine related to issues people had with autism services. I categorise the problems into six different areas including assessment of needs, access to therapy and education. A young man in my parish called Charlie Wilford is in Portroe National School and needs to go to another more suitable school in either Lisnagry or Roscrea. He was refused last year. He was told he would be refused this year and guess what? He has already been told he will not get to go next year either. What am I supposed to say to him? The fourth area is health which is ongoing in many cases. Fifth is societal issues which is why we are trying to turn Nenagh into an autism friendly town like Clonakilty. Sixth, an issue that is often forgotten about, is work. They are the six categories and we must deal with all of them because we are failing these people. We should specifically look at the case of Neil Darmody who was born on 29 October 2012 and has been failed by the State.

Only for the advocacy and work of Mark, his wife and Cara, he would continue to be failed by this State. To a certain point, his life has gone, as his father has acknowledged in many interviews. What we want to ensure from this debate, as one massive move, is that any child who does not get an assessment within three months will have it paid for by the State if they go private.

Mark Darmody received an email from an Anne Ennis of the HSE which states, "I can confirm that the psychology assessment conducted by Dr. O'Dwyer will be paid for by the HSE". However, this morning I got a reply to parliamentary question from Bernard O'Regan of the HSE which states:

The HSE does not fund or reimburse any fees paid to private practitioners in any of the health service areas where assessments have been commissioned by the service user or their family directly as this would undermine the principle of equity of access for all children based on individual need

That is completely contradictory. What happened with what Mark pursued and got in writing from the HSE is completely and utterly contradicted by that answer.

A precedent has been set, therefore, and what we really want is the following. I will stand behind any family with a child that cannot get an assessment of need within three months going out and getting it done by a recognised practitioner and giving the bill to the State. That is what the Darmodys did and the reason it was paid is that they ran a national campaign and created a precedent. As a Deputy for Tipperary, I am bloody well proud of them.

I have to acknowledge the Minister of State, Deputy Rabbitte, and the Minister, Deputy O'Gorman, putting on the record today that if six assessment units are not set up across the country by 1 August, this Minister will go to the budget and say that what the Labour Party has proposed has to be budgeted for. Every child who does not get an assessment of need within three months will be able to go privately and it will be paid for by the State, which in the case of the Darmodys was €1,700. I ask the Taoiseach to honour that commitment. I hope those units are set up. In light of the history of this matter, however, we have our doubts. The Labour Party will collectively acknowledge what the Minister of State, Deputy Rabbitte, has done on the floor of the Dáil with the Minister, Deputy O'Gorman, because I am sure they agreed it beforehand. That would be a step in the right direction and it would honour the work of Cara Darmody and her father to date.

Question put and agreed to.