Disability Funding Report: Motion

The next item of business is the motion regarding the report of the Joint Committee on Disability Matters. I understand the committee Chairman, Deputy Michael Moynihan, is indisposed and unable to be here so I invite Deputy Tully to move the motion.

I move:

That Dáil Éireann shall take note of the Report of the Joint Committee on Disability Matters entitled ‘Aligning Disability Funding with the United Nations Convention on the Rights of Persons with Disabilities, Budget 2022 Pre-Budget Submission’ on 7th July, 2021 and, in particular, note the recommendations in relation to urgent publication of key reports commissioned and concluded but not yet published.

The Oireachtas Joint Committee on Disability Matters prepared a report entitled Aligning Disability Funding with the United Nations Convention on the Rights of Persons with Disabilities: Budget 2022 Pre-Budget Submission, which was laid before the Houses in July 2021. The committee did this because its members had come to realise that disabled people continue to be institutionalised, segregated and left behind in society across all sectors. The situation in Ireland is stark. Data on poverty and employment rates identify Ireland as the worst country in western Europe in which to be a disabled person. Currently, the rate of poverty and social exclusion for disabled persons in Ireland is one of the highest in the EU at 38.1% and EU figures show Ireland to be the country with the lowest employment rate of disabled persons, at 32.3%. The poverty rate for disabled persons was exacerbated by the 2008 financial and economic crisis and the subsequent response of austerity, as the consistent poverty rate for disabled persons increased from 9% in 2009 to 24% in 2017. The United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, is a landmark convention which seeks to reverse these trends and ensure that disabled persons can enjoy the same human rights as everyone else by integrating disabled persons back into our societies, communities and economies.

The Oireachtas Joint Committee on Disability Matters, which was set up to consider all disability matters, including monitoring the implementation by Ireland of the UNCRPD, uses the UN convention as a benchmark and works to integrate disabled persons into our society, community and economy. The committee believes that the voice that disabled persons have actively taken under the UNCRPD must continue to influence and inform policy and be heard by all sectors of society. This is crucial in a society that has marginalised and excluded disabled people throughout time and history. The committee's report, Aligning Disability Funding with the United Nations Convention on the Rights of Persons with Disabilities: Budget 2022 Pre-Budget Submission, is informed by the lived experience and analysis of those who made submissions to the committee and those from whom members hear daily and directly in their constituencies. It sought to align disability funding with the objectives of the UNCRPD.

In terms of equality budgeting and the well-being framework in budget 2022, the committee believes that universal design thinking as an approach for economic recovery has greater potential benefits given that it benefits a range of groups including disability groups. This will be especially important in the context of the growth in our ageing population and the longer-term challenges for that group. The committee is very concerned by the level of unmet need in the disability sector, which has not been addressed in budgetary allocations. It is also concerned by the delay in publishing the disability capacity review and by the fact that the Indecon cost of disability report, which examines the cost of disability in Ireland, has not yet been published and therefore did not inform the budget 2022 process. The committee is also concerned that the lack of data across all disability groups further ensures that the level of unmet need cannot be addressed effectively in budgetary allocations. I refer here to the lack of data on personal assistant needs, wheelchair users requiring fully accessible houses, the uptake of health screening among women with disabilities, and on stroke survivors living in Ireland, to name but a few. To improve this, as highlighted in the committee's pre-budget submission, an immediate allocation of funding for improved data collection and disaggregation is required.

In its pre-budget submission, the committee also recommends that additional funding is made available for additional respite facilities and respite nights to meet the demand and growing waiting lists for respite services. The committee recognises that respite services are crucial in addressing the impact of the loss of services during the Covid-19 pandemic and in providing a quality of life for disabled persons and their carers. The committee notes the confirmation from the Minister of State, Deputy Rabbitte, that an additional €9 million will be provided in 2021 to further build the capacity of our respite services in each community healthcare organisation, CHO, for children and adults, as well as providing alternative models of respite care. I ask the Minister of State to outline how many new respite facilities have opened so far and to provide an update on the situation.

The committee recommended that additional funding for housing adaptation be provided and notes that funding for housing adaptation grants rose to €60 million, an increase of €5 million on last year's allocation. However, the committee is concerned that this additional funding may not reflect current increases in building costs. This is a short-term solution but the long-term solution is to ensure a sufficient supply of adaptable or fully accessible houses in Ireland, as this would eliminate the need for so many people to apply for adaptation grants. In this regard, the committee recommended in its pre-budget submission the introduction of national targets to ensure that new housing is increasingly accessible or adaptable for disabled persons along with the specification of a minimum requirement for the provision of universally designed housing units and additional funding for housing adaptation grants.

The committee notes the Minister of State's announcement regarding increases in personal assistance hours. An additional 100,000 personal assistance hours will be provided next year, as well as an additional 30,000 home support hours to support people to live self-directed lives. However, the committee believes that more is needed because, as highlighted in the disability capacity review, the need for personal assistance services has not been quantified. In this regard, the committee believes that devolved budgets for personal assistance is a transformative intervention to align disability services with the UNCRPD. It recommends that the personalised budgets demonstration project is funded to ensure the timely development of a national service framework for personalised budgets, along with appropriate funding of a standardised nationalised personal assistance system in keeping with Article 19 of the UNCRPD.

The committee recommends that the progressing disability services model is fully funded and that dedicated funding streams are introduced to quickly build the capacity of the new children's disability network teams on time and on target. The committee notes the provision of €8.2 million for the recruitment of therapists and administrative support to the newly established 91 children's disability network teams announced in budget 2022.

The investment in delivering Progressing Disability Services for children and young people, which will increase therapeutic staff under the newly established children's disability network team model will, I hope, reduce waiting lists for access to assessment of need and increase access to timely, early intervention services. We did, however, listen with alarm to the Minister's recent statement acknowledging that a backlog of approximately 4,000 has now developed for the assessment of need waiting list, which not long ago was reported to have been dramatically reduced.

The committee also believes that ratification of the optional protocol to the UNCRPD must be urgently undertaken to ensure that the voice that disabled people have actively taken under the convention, which all sectors of society need to hear, is not be silenced by Ireland not ratifying it. The mechanisms for delivery of the optional protocol must also be funded under budgetary allocations.

I understand the Minister of State wishes to share time with Deputy Leddin and possibly Deputy Hourigan. Is that agreed? Agreed.

I thank Deputies for their contributions and for the opportunity to address this motion. I also thank the joint committee both for its invaluable work in seeking to improve services and promote the rights of people with disabilities and for producing the report. Having published Ireland's first State report on the United Nations Convention on the Rights of Persons with Disabilities last Thursday, it is timely that we are having the discussion here today.

I wish to start by talking about the new Department, which will help ensure that health-funded disability services are progressing to meet our obligations under the convention. The Government has acted to bring the different branches of disability together. The disability unit that was previously contained in the Department of Justice has moved to the Department of Children, Equality, Disability, Integration and Youth. Early next year, the disability policy functions currently in the Department of Health will also transfer. I believe this will allow me to have the strands of disability policy under my remit in one Department. Bringing all areas of disability under one roof will facilitate easier collaboration and innovation in the delivery of services to persons with a disability.

As I am sure Members are all aware, Ireland ratified the UNCRPD in 2018 and continues to progressively realise its obligations under the convention. Having submitted our initial State report last week, I look forward to engaging fully with the committee's review of our implementation of the convention. I have been asked a number of times about the status of the optional protocol, so it is important to address it here today. The optional protocol establishes two procedures aimed at strengthening the implementation and monitoring of the convention. The first is a communications procedure allowing individuals to bring petitions to the committee claiming breaches of their rights. The second is an inquiry procedure giving the committee authority to undertake inquiries of grave or systematic violations of the convention.

Although it was anticipated that ratification of the optional protocol would take place after the conclusion of the review of Ireland's initial State report, due to backlogs at the committee our review date may not occur for some time. I am pleased to confirm to the House that both the Minister, Deputy O'Gorman, who is joining me here this evening, and I are open to an earlier ratification, provided the State is in a position to meet its obligations.

A significant review of domestic procedures and complaints mechanisms must be conducted to determine what legislative or procedural steps might be required to ensure that Ireland is compliant with the optional protocol upon ratification. This process has already begun within my Department and will be progressed in parallel with the development of the UNCRPD implementation plan next year. We will then have a clearer sense of what further steps are required at the domestic level.

Regarding the roll-out of specific health-funded services more aligned to the UNCRPD, Members will be aware that I recently published a report, A Review of Disability Social Care Demand and Capacity Requirements up to 2032. This report quantifies and costs future need for health-funded disability support services. It is important to note that the report quantifies and costs future need for disability support services from a 2018 baseline not a 2021 baseline. That is, the funding requirements as set out in the report are relative to 2018 expenditure, not 2021. An interdepartmental working group is now preparing the action plan for consideration of the Cabinet social policy sub-committee as soon as possible. This work was enhanced by the views of service users and representative organisations who were consulted in September of this year, in line with Article 4 of the UNCRPD. This work will put a significant focus, direction and shape on how services align with the UNCRPD.

Regarding specific services and funding, budget 2022 builds on €100 million of new development funding allocated in 2021 to enhance specialist disability services. The 2022 budget allocation totals an additional €115 million for the disability services budget. The HSE, in preparing its national service plan, is examining how each key priority can be progressed in 2022 within the overall increased envelope of funding for disability services.

I will move to adult day services, which I am pleased to say were allowed reopen to full capacity on 22 October. Given the evolving challenges the pandemic has created for us all, I recognise and value the work of service providers and their dedicated staff to deliver this important service. In addition to day services, it is important to remember the importance of respite care and care in the home. This time last year I was very fortunate to get recognition that disability was an essential service. I thank all the staff for the support that they have given us since then. The increase in day-service capacity was supported by additional funding of €30 million provided in budget 2021 to increase capacity in buildings and provide extra staff. It is also important to highlight how important the vaccination programme is for people with disabilities, including those attending day services. More than 90% of staff and service users have had two doses of vaccine and plans for the administration of boosters were announced by my colleague, the Minister for Health, Deputy Stephen Donnelly, earlier this week.

I wish to move now to children's disability services. In August 2020, as the Deputy correctly stated, the Government allocated extra funding of €7.8 million to clear a backlog that I had inherited under the old assessment of needs system which had more than 6,500 young people on it. By August of this year, 92% of that was cleared, but 552 young people were still waiting for an assessment. We all know that the standard operating procedure, SOP, model came into operation as well in January 2020. Some of the CHOs were managing to do both and applied a parallel project in looking after the SOP and the assessment of needs. The €7.8 million was used to clear the backlog so that we could have a clear platform to get to the intervention space. We should move away from the assessment model so that the first time a child meets a person for assessment or therapy, it is an intervention. There should be a clear pathway. The outreach I referred to recently was in relation to the October report from the HSE. I will stop at this point and come back in later on.

I commend the Minister of State on her very thoughtful words, as ever, and I thank her for sharing her time. I also commend the committee on publishing this very important and thorough report.

Some years ago, I travelled with my partner to the Netherlands. In the historic city of Nijmegen, we stayed in the home of a Dutch man who kindly rented us the spare room in his apartment. The man was quadriplegic and the apartment had been carefully designed to meet his needs. In the developed world we recognise the importance of universal access, underpinned by the United Nations Convention on the Rights of Persons with Disabilities, by having building design standards that ensure that people with disabilities can live their lives freely and independently. It is a fundamental right, and in our building design codes we have acted to ensure that this right is protected.

After leaving Nijmegen, we cycled from city to city and across beautiful countryside. Sometimes we took trains, but mostly we cycled. We were young and fit, but we were also able bodied, and I was more aware than ever in my life how much of a privilege that is. As we travelled, newly appreciative of the challenges of people with disabilities, I noticed on the streets of Dutch towns and cities more and more people who, whether through illness, age or other reasons, did not have the same privilege that myself and my partner had. These were people of all ages and genders with all kinds of mobility aids - trikes, wheelchairs, adapted bikes and so on.

With its excellent infrastructure, the Netherlands is a good country for cycling, but after a few days there it became clear that it is wrong to characterise the Dutch approach as simply to prioritise cycling. The truth is that they have designed and built mobility networks for everybody, for people of all ages, genders and, critically, abilities.

On returning to Ireland, I did not see so many people with disabilities and I wondered why that was the case. Is there a lower incidence of people with disabilities in Ireland? No, that is not true. What is true, sadly, is that by not designing and building safe and coherent mobility networks, we have locked people in their homes. As a State, historically, we have been neglectful of the needs of so many of our citizens because, while we may have designed universal access into our building codes, we have simply not done so with respect to our roads and streets. We have prioritised the needs of the wealthy and the able-bodied over everyone else. It is not an exaggeration to say that we have treated a cohort of our population as second-class citizens and we should be utterly ashamed.

The design manual for roads and streets is an important guide; indeed, it is mandatory guidance. However, many of our local authorities wilfully ignore it when carrying out physical interventions in respect of our streets. This is unacceptable and I call on the Ministers, Deputies Eamon Ryan and Darragh O’Brien, to restate to local authorities that compliance is not a choice. I would welcome further regulation to ensure that local authorities, in all of their functions, are required to adhere to this manual.

The Government is stepping up and providing unprecedented funding for active travel infrastructure, more than almost any other country in the world. We need our institutions of State to spend this money properly and to ensure, as quickly as possible, that we develop the mobility networks that are so critical to the well-being and independence of so many of our people.

Many Members are offering. The next three speakers have ten minutes available to them. If Deputies Cairns, Murnane O'Connor and Canney take their ten minutes, Deputy Bacik will not get any time. I ask them maybe to relinquish two minutes each so Deputy Bacik can be accommodated. I take it Deputy Tully is sharing time in her wrap-up with Deputy Wynne. Everyone is happy. Good. I call Deputy Cairns.

The stand-in chairperson’s forward to our pre-budget submission notes that a key measure to aid translation of the UNCRPD into law is ensuring that adequate funding is allocated in the national budget, while the UN human rights document, Realizing the Rights of Persons with Disabilities, a handbook for parliamentarians, identifies budgetary measures as being central to realising the rights of people with disabilities. The Oireachtas has an obligation to ensure that appropriate funding is assigned to the different sectors that provide services and supports, and this point cannot be overstated. Proper funding is necessary for individuals to realise their rights under the UNCRPD. Without this, the State is knowingly failing people, families and entire communities.

Despite signing up to the convention, we have a considerable way to go for it to be a reality in the lives of people with disabilities. If we accept the testimony from witnesses to the committee, we have to conclude that Ireland has a budget-based approach to disabilities, not a rights-based approach. One of the clearest examples of this is special needs education. We have many children and young people who are entitled to SNA resource hours but do not get them because they are not available. This is a budgetary decision, not a rights-based one. Over the past two months, I have been working with national schools across Cork South-West and I am sure all Deputies have done the same in their constituencies. In Schull, Ballydehob, Dreeny and Rosscarbery, which are entitled to SNAs and resource hours, they have not been allocated. If an individual meets the criteria, they should automatically get the support they are entitled to; that is the measure of a rights-based approach.

Perhaps I am being naive but it is the system that we need to change. In the meantime, we should have the decency to admit that, despite what Departments and even Ministers say, we do not have a rights-based approach, and that is just the reality at the moment. The first step in solving any problem is recognising that there is one.

At the committee's meetings each week we hear examples of State failures, apathy and even hostility towards people with disabilities and their families, who have to fight and fight for access to home care, equipment, transport, housing, education and the chance to live independently - you name it. Recently, Samantha Kenny, a family carer and parent to a six-year-old girl with a rare genetic disorder, two boys, aged 10 and 14, who are autistic, and a 15-year-old boy who has no diagnosis, described to us the struggle to access services. She said:

As a parent and full-time family carer, the past eight years have been extremely eye-opening. I have come across obstacles I never dreamed of and genuinely, the fight to not only obtain support but to also keep it has been absolutely exhausting.

She explained how they had to rely on family for a suitable home, having to constantly save to adapt their home, and fundraising for a wheelchair-accessible van.

Also appearing that day was Damien O’Reilly, who has a physical disability, cerebral palsy, due to a lack of oxygen at birth. He provided an account of having to argue and work tirelessly to access supports for independent living. He could not go to college initially because of lack of support. He had to negotiate with the HSE just to get half the hours of personal assistance he required and, now, he trains his own personal assistants, PAs.

There are over 1,000 people under 65 years of age who are forced into nursing homes because we do not have the supported living settings for them to live with their peers in the community. In response to the Ombudsman’s report, Wasted Lives - Time for a better future for younger people in nursing homes, the HSE committed to transitioning 18 people under 65 from nursing homes. That is 18 out of at least 1,300, which is less than 2%.

I know it is really complex area, spread across different Departments and agencies but, ultimately, money is such a major factor. The convention is the standard we have signed up to and that is the standard we need to reach. Furthermore, this need is understood and has been qualified. The Department of Health's report on unmet needs identified the funding required, €350 million. Despite increases this year, there is still a deficit of €300 million that is required for next year. That is the report we have access to, which is thanks to the work of advocates and, I suspect, thanks to the work of the Minister of State, Deputy Rabbitte. The Department of Social Protection’s cost of disability report has been with that Department for months and remains unpublished, despite requests from campaigners, NGOs Deputies and, I presume, all parties. However, what we know is that, on average, EU countries spend 2% of their GDP on social protection expenditure for disability. Ireland's expenditure is just 0.8%, the second lowest in the EU. No wonder the consistent poverty rate for people with disabilities has risen from 9% in 2009 to 24% in 2017.

The committee submission also notes that the optional protocol to the UNCRPD must be ratified urgently to ensure complaints can be submitted directly to the UN committee by individuals if they feel their rights have been violated under the UNCRPD. The optional protocol is a vital tool to enable people to enforce the rights acknowledged in the convention. I firmly believe it will make a significant difference in holding the State accountable for the deficiencies in services and the barriers individuals face. We have heard from different experts, including the Irish Human Rights and Equality Commission, which clearly stated the optional protocol can be ratified at any point - they said it could be ratified tomorrow - and that the timing is entirely at the discretion of the Government. The UN special rapporteur on disabilities said the same. However, the Government, following the lead of the Department of Children, Equality, Disability, Integration and Youth, argues that we must review current mechanisms and fully commence the Assisted Decision-Making (Capacity) Act 2015. This is despite the fact many other states have ratified the optional protocol first and then put in place the infrastructure. It is an important step to increase awareness of disability rights that will hasten the necessary changes.

I am going to continue to push for this. Unfortunately, to date, all I have been met with is brick walls. I hope the rest of the committee will continue to push in the same way. Disgracefully, it took Ireland more than ten years to ratify the UNCRPD. We cannot wait that long again for people to be able to guarantee their rights. Ensuring the rights of people with disabilities are fully realised is a matter of resolve; it is about matching policy and rhetoric. At the end of the day, it is about Government priorities.

I have to point out my disappointment that neither the Minister for Finance nor the Minister for Public Expenditure and Reform are present. Until those Ministers and respective Departments understand and take these issues with the seriousness they deserve, individuals, families and whole communities will continue to face the barriers which we hear about every single week in our committee. None of us can doubt the commitment of the Minister of State, Deputy Rabbitte, to disability matters, but she can only work with what she is given. Unfortunately, this relates to a larger trend where Cabinet Ministers have not appeared before the committee, despite our requests. The Minister for Housing, Local Government and Heritage and the Minister for Health could not make time to attend. The Ministers of State in those Departments, including Deputy Rabbitte, and the Minister for Children, Equality, Disability, Integration and Youth, have appeared and engaged genuinely with us, and they are both here today.

The scale of failures and barriers we hear about and the suffering the State imposes on these individuals and their families deserve proper attention.

If carers and people with disabilities are willing to give up their valuable time to appear before us in committee meetings, the least they should expect from the relevant Cabinet Ministers is for them to attend the same meetings and the likes of this sitting. For this document or for the committee to mean anything, we need a seismic shift in the budgetary response to disability. It is as much an issue for the Department of Housing, Local Government and Heritage and the Department of Public Expenditure and Reform as it is for the Department of Health and the Department of Children, Equality, Disability, Integration and Youth. Unless we push for this with all of our individual and collective capacity for change, we are failing the people who appear before us every week. They put significant effort and emotion into telling their stories to officials again and again and we are obliged to ensure this is not done in vain.

I thank the Minister of State. It is great to see her here. I am also a member of the Joint Committee on Disability Matters and I know how hard everyone works there. It is time for action and this is a call for action. Action is highlighted in the committee's pre-budget submission for budget 2022. The submission calls for the programme for Government commitments that oblige action for inclusion to be fulfilled such that the concerns and needs of people are addressed in a meaningful way and for disability funding to be aligned with the UNCRPD.

We all know this is about people with disability and they have to be living their best lives. This is about inclusion for people with disabilities, which can only be truly achieved through adequate funding being allocated in the national budget for the various sectors relevant to the realisation of the rights of people with disabilities under the UNCRPD. This is crucial because for centuries people with disabilities, particularly those with intellectual disabilities and those with mental health problems, have been institutionalised and segregated from mainstream society. In Ireland the rate of poverty and social exclusion for people with disabilities is one of the highest in the EU at more than 38%. We also have one of the lowest employment rates of people with disabilities in Europe. I know that is a concern for the Minister of State and that is worrying. We must meaningfully address the realisation of the rights of people with disabilities under the UNCRPD, as committed to in the programme for Government.

When I take clinics in my office in County Carlow, I am reminded of the barriers before people living with disabilities. Those with disabilities who are incontinent face staggering charges for their bins. A lady rang me about this recently and it is a huge issue because these people are in poverty. That is something we need to address. In the committee this morning we heard witnesses discuss the limitation of disability service to provide for chronic illnesses. An example that was highlighted is the lack of public toilets. These are barriers to people that seem to be simple to fix so we need to fix them.

The motion calls for a step change across all sectors of society, from a medical model of disability to a social and rights-based model of care, which ensures the inclusion of all groups of people with disabilities across our communities. My biggest concern, which is shared by all members of the committee, is the rate of poverty and social exclusion for people with disabilities in Ireland, which is one of the highest in the EU. The level of unmet need in the disability sector must be addressed and the disability capacity review must be published.

I want to talk about some other issues. I have the following concerns arising from both my work in the committee and my work in Carlow-Kilkenny. I want to thank the Minister of State, Deputy Butler, as we will hopefully get our building for the Holy Angels day care centre. I have been at meetings about the design of that recently but there are issues with it. Even though we have the site and it is in the capital plan, we are going on plans from 2017. My concern, which I have highlighted to the Minister of State, is that it is nearly six years later. I am concerned that we are not taking into account the expansion of services that is occurring in Carlow and in other counties such as Kilkenny. From speaking with those in the different services I know that resources are needed. Children are still facing huge barriers in accessing treatments and support and I ask the Minister of State to look at that. I know about the funding that is being put in and I understand that but there are a still a lot of concerns among parents who I am working with.

Another barrier is housing. I have constantly said that we need to talk about what is being built in Ireland and that we need to address the issue that we are building units that only serve one type of family. Allowing those with disabilities to live independently must be a core priority. I was delighted to attend the opening of the Kilkenny County Council housing project in Castlecomer last month with the Minister for Housing, Local Government and Heritage, Deputy Darragh O’Brien. This is a development in rural Kilkenny that has one-bedroom units. This is unusual for county towns and it is a sign of how we need to build more diverse units for all of us. That has to be contained in Housing for All. We need to build homes that are adapted to people with disabilities. For example, wet rooms are so important, as are downstairs bathrooms. In the long term we will save the Government money by doing that because these units will have to be built anyway. I would also like to see more priority given to families with children and adults with disabilities on the housing lists in local authorities.

Carlow has a population of 56,932, of 14% is living with at least one disability. That is why I have been working with Carlow County Council to ensure that we provide more purpose-built housing for those with disability and to ensure that we make the public aware of the disability grants available to them to remodel their existing homes. That is hugely important information. We have to get the information out to people and families. If we have more campaigns like that then people will learn from them. People with disabilities are more than twice as likely to report discrimination in housing and are over 1.6 times more likely to live in poor conditions. These are important considerations when we look at providing good homes.

Respite is another huge issue for me and I know the Minister of State is doing her best. We need to be positive on this because we need to make change. Another person who contacted me recently said she was entitled to free travel, which she said was great except that there is no public transport link around County Carlow. She said that there are public buses and trains to major cities but nothing internal. We received the great news that Carlow is getting its own town bus service and that is so important but we need to make sure there is other transport in place. When you are in rural Ireland you have to have a car to get around the county and reach services so we need to look at that. I want to highlight these issues because I know we will work on them together. I mention medical cards, which are a nightmare for me. People with disabilities and people who need medical cards should automatically get them. I ask that we would set up a team or a committee to address these issues.

I want to mention a sad case which a lady in Carlow contacted me about. There was an horrific accident about a year and a half ago and this lady’s daughter was left paralysed from the chest down and so she is now in a wheelchair. She told me that when she goes to bring her daughter out for a walk, particularly around her housing estate, she is afraid that her daughter will fall out of the wheelchair because of the condition of the footpath. We cannot allow this to happen anymore. We have to make sure that our footpaths and roads are safe for our wheelchair users and for those who are vision impaired. That was her biggest concern. There is one thing about this case that I am annoyed and tormented over and I have made an appeal on it twice. The mother has applied for carer’s allowance for her daughter twice and has been refused twice. Her daughter needs 24-hour care. She is a great mother and she has a beautiful daughter and yet she has been refused carer’s allowance. You could not make it up. I am going to appeal it again because I cannot believe it. It is so hard to sort out nursing and all the issues. We need to get all these issues sorted because we need to give the most vulnerable people in our society more support. We need to try to be there for them more. I have gone to the Minister of State, Deputy Rabbitte, about the above case and I know she will come back to me because she always does so. I have to give her credit where it is deserved.

Another case I am working on involves children with epilepsy, including students sitting their leaving certificate who have seizures and who cannot properly sit the exams. They are essentially excluded from the CAO process. These seizures can be triggered by stress, tiredness and irregular eating patterns, all of which go hand-in-hand with the leaving certificate as we know. There was a mechanism for students who contracted Covid to resit their exams but there is no such mechanism for students with epilepsy. These are simple barriers but when we have these policies in place all we need to do is change them. I ask that we change these policies.

Another issue I want to talk about is carers. I am working on a case today in which a chap has to come home from hospital and we cannot get a home care package in place for him because we do not have enough carers. I know that funding is there but that we are finding it hard to get staff. However, my understanding is that the recruitment process is beginning to bear fruit, which I am delighted with. However, the decision of the Department of Enterprise, Trade and Employment to exclude home carers from the critical skills exemption to the non-EEA employment permit system was not helpful. It means that we are struggling to get these staff so I would like to ask that this be looked at.

There are so many things I need to highlight because I work on them every day, as all of us Deputies and Senators do. I work with the Minister, Deputy O’Gorman, and the Minister of State, Deputy Rabbitte, on all of these matters.

Another issue that have I been working with many people on is personal assistance and individual choice about which aspect of social, economic and political life to participate in. This is something that has been raised with me recently. We need to make sure that we give people that choice. I see how important personal assistants are for disabled people and how this has to be valued. On personal assistant services, Article 19 would ratify the right of disabled people to live in the community and have a right to access the services that would allow them.

It is so important that we make sure that we do what we can to work with all the different disability services because it is about communication. It is about everybody working together because sometimes that does not happen. Since both Deputies Rabbitte and O'Gorman have become Ministers, they have worked hard. I thank them for that. However, we have a lot more work to do.

I suspect in light of what Deputy Murnane O'Connor said that wee Anne will probably be acknowledged among the holy angels in the new building in Carlow.

I welcome the opportunity to contribute. I acknowledge the presence of both my colleagues from Galway, the Minister of State, Deputy Anne Rabbitte, and the Minister, Deputy O'Gorman.

When this committee was set up, I volunteered for it for the simple reason that I spent five years representing a constituency and have been experiencing and seeing all through my life the lived experience of people with disabilities. I thought it was an ideal opportunity, but what really engaged me was the fact that everybody on the committee worked so hard together. I want to thank everybody, led by our Chair, Deputy Michael Moynihan, who is not here. So far, it has been a great experience.

For me, it has been a listening experience. I have spent most of my time listening to people with their expert advice from the lived experience of people with disabilities. To recap, there are the persons with the disability who, when they get married, are penalised because their income is assessed jointly with their wife's and they lose their disability allowance or disability benefit, and they becomes demoralised. They still cannot work. It is a great story until they get married. There are also the amputees who have an income and are not automatically entitled to a medical card. We saw this eloquently being discussed by Councillor Gabe Cronnelly, from the Minister of State's and my constituency, who is an amputee. To replace his prosthesis will cost €20,000. That is his money. Because he is a county councillor and he is getting an income from it, and his wife works as a nurse, he is being penalised.

Councillor Cronnelly spoke also about the fact that he is a public representative, and we need to have more public representatives from among those with disabilities. There are 643,000 people in this country who have a disability and, therefore, we should have more people on local authorities or in this House telling us what it is all about and how they are living.

Another issue that is close to my heart is the housing adaptation grant. When people are being assessed for the grant, the income of the entire household is taken into account. It is wrong because the person then probably will not get the grant. The entire family are there and they are blaming themselves for the fact that they are living in the house. Maybe they are siblings or maybe it is a husband or wife who is working. All of that is wrong.

That leads to the other issue of children who are blind since birth and who have been refused the primary medical certificate. Every time their parents go to look for something, they have to go back and prove, with a consultant's report, that the child is blind. The child is blind since birth. He or she then goes to secondary school, and that is it. It is the same with Councillor Gabe Cronnelly. He said that every time he looks for something, he has to tell people and get updated reports stating that he is still an amputee. As he stated quite candidly to us, his leg is not going to grow back. Members can also imagine the frustration for parents.

The other issue I have come across is where someone has a child who went for an operation last week. The operation was to be cancelled at the last minute because there were no paediatric nurses available to care for him in the hospital afterwards. Luckily, we got the operation back on stream but then there were not enough paediatric nurses to care for him at home for four nights. This type of thing has got to stop. When I say it has got to stop, we have to make it stop. I am not saying the Minister has to make it stop. We have to make this stop because we are the legislators. This is what we come back to - the UNCRPD. It is a landmark convention but it simply states that we seek to ensure that people with disabilities can enjoy the same human rights as everyone else. If we are true to that, we will initiate the implementation of the protocol.

I note, from the Minister of State, Deputy Rabbitte's remarks, that she is pleased to confirm that the Minister, Deputy O’Gorman, and herself are open to an earlier ratification, but then she stated, "provided the State is in a position to meet its obligations". We should not have to say that. We should meet our obligations. We should invoke the protocol. We should say, once and for all, that this is it and we will make sure that people with disabilities have a right to take us to court if we do not do what is a human right for them.

There are two other issues. The Indecon cost of disability report has not been published and that needs to be published immediately. I do not know why it has not been published and it needs to be published as a matter of urgency.

The final issue is that we need to see the plan for the €105 million, which I welcome, in the budget this year. I am concerned that it remains unclear where and how this money will be spent.

the Department is drafting a strategy on autism, which is another issue that is close to my heart. We introduced a Bill on autism but what we need to do, rather than having the strategy and leaving it there then, is have the implementation plan for that strategy published with the plan. That is where most strategies fall down when they come from Departments.

We have to work together on this. We have a significant number of challenges. We need to be able to make sure that the money is available, but it is not only one Department that has to make this happen. People were talking about housing. They were talking about roads. They were talking about other issues that are along the way. There has to be an interdepartmental approach to this and we have to make sure that, once and for all, we start making progress on a step-by-step basis. I welcome the opportunity, as a member of the committee, to work with Government to make sure we do this. I will pass over to Deputy Bacik.

I thank Deputies Cairns and Canney for giving up their time. I acknowledge the presence of the Minister, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte.

As a former member of the committee in my role as a Senator, I was glad to take part in some of the hearings that led to the production of this report, albeit I had to leave the committee on my election to this House before the report was completed.

It was, as Deputy Canney has said, a powerful experience to hear the testimonies of persons with disabilities, to hear representatives from disabled people's organisation and to hear renowned experts, such as Professor Gerard Quinn, speak about the importance of the UNCRPD and of implementing a truly rights-based approach for persons with disabilities. We all learned a great deal - I know I did - from the experience of being on the committee and I want to acknowledge that.

I also commend my former colleagues on the committee, including Deputies Tully and Michael Moynihan, whom we all wish a speedy recovery, for the immense work that went into the report and for the strong recommendations in it. The voices of the individuals who we heard and their experiences are reflected in these recommendations. That is really important too.

It is disappointing to learn, despite that key recommendation that the optional protocol would be urgently ratified, that it will be delayed. The Minister frankly acknowledged difficulties with it. I wonder will we see ratification in 2022, as is hoped for in the committee's report or is it likely to be delayed further. That is a key question.

It is also disappointing to hear of the delay in the transfer of functions between Departments. There is an ambitious programme of transfer of functions. The disability unit that was within the Department of Justice has now moved to the new Department, the Department of Children, Equality, Disability, Integration and Youth, but I understand the disability functions in the Department of Health have yet to transfer.

I recall raising this issue at committee hearings with the Minister of State. At that point, it seemed that those functions would transfer sooner. I know there have been difficulties with individual hard cases, for example, falling between Departments. I hope we will see a very speedy and efficient roll-out of that transfer.

I will refer to a number of key recommendations, in particular on education and recommendations Nos. 23 to 26, inclusive, on the need to see a roll-out of ASD units and of SNAs to children with particular needs. In my own constituency in Dublin Bay South, I met with quite a number of parents on Monday night about their immense distress and frustration and not being able to access places for their children. We have a real shortage of ASD units in Dublin 2, 4 and 6. It is something that I have raised, as have others, in both Houses. We really need to see this addressed urgently so I am really glad the committee is highlighting that issue.

The report acknowledges rightly that transport and housing are key factors to enable people with disabilities to live independently. On travel, I am really glad to see universal design thinking emphasised. There are two issues that disabled constituents have raised with me consistently. One is the need to regulate e-scooters. I was sorry I did not get a chance to speak on the Road Traffic Bill earlier. We ran out of time. It is vitally important that we regulate the use of e-scooters. These really cause people with disabilities and mobility issues a great deal of concern due to unregulated usage and the danger that presents to all of us on roads and footpaths.

There is the issue of free travel. Epilepsy Ireland, in particular, has been campaigning for change to ensure that individuals will have greater access to free travel passes where people with epilepsy may feel it is not safe to use private cars.

I am really glad that housing and care is really emphasised in this report. Something that came up at many of our hearings was the need to ensure and facilitate and move away from congregation settings for persons with disabilities. However, as the report acknowledges, there are still significant numbers of persons under 65 years of age still housed in nursing homes and people in congregated settings where they should be facilitated with a move to community-based and smaller settings.

This is an issue that I think we really need, again to focus on with much greater urgency. I raised it just this evening in a Topical Issue debate. There is a crisis in terms of recruitment of home carers. There is such a shortage. All of us are hearing it in every constituency. We are hearing it from those who require care themselves, either due to age or disability, from their carers within families and, indeed, from the carers themselves who have come to so many of us looking for greater certainty and better conditions. We have also heard from the providers of care services who tell us that they cannot recruit staff. In order to move to the decongregation which the committee heard so much about, we need to address this crisis so that people will be supported in living independently in their own homes through the provision of home-based care. That is an essential part of the new fair deal as well for those persons with needs that have in the past meant they were institutionalised but who happily, now, in a more enlightened time we hope we can support at home. However, I learned earlier that nearly 5,000 people, as of September, who have been assessed for home support hours were still awaiting allocation for a home carer. That is a shocking figure in 2021. I think that illustrates the difficulty with achieving that rights-based approach that this report so rightly demands.

If everyone is happy, I suggest that we hear the proposer, Deputy Tully, and Deputy Wynne, who is sharing time with her, and then the Minister can wrap up at the end.

I thank my colleague Deputy Tully for sharing her time. We talk about disability services all the time. The budget is about all about services with day services and respite services. I wish we could talk more about rights and the human rights of human people.

I could raise a number of issues tonight but I will focus on the transfer of the disability portfolio. It seemed very exciting and progressive for disability to be named as part of a Department’s functions when this Dáil was formed in 2020. It should have been a step in the right direction to move away from the medical model which views and treats people with disabilities as sick people towards a more social or human rights based model. The transfer has been as clear as mud in many respects, especially in relation to the Department of Health, which is disappointing.

Since this was announced, I have sought timelines and details about the functions that will be transferred and what services will remain in the Department of Health. I asked the Taoiseach if his oversight is required considering how aimless the transfer has been over the last two years. It would be quite a big undertaking to oversee. The Minister responded that it is the intention that responsibility for the provision of the services will remain within the HSE following the transfer. He said that his Department will continue to deliver mainstream services for people with disabilities. Retaining the services within the HSE mitigates the risk of disruption to service delivery for service users and maintains current pathways to provide mainstream community health services and primary care therapies to all disability service users.

I wish that the Minister was present here and I hope he hears what has been said week-in, week-out by the witnesses who attended the disability matters committee because that would rip that statement to shreds. I am confused by his remark that he is trying to mitigate disruption to services by retaining the services in the HSE. For the overwhelming majority of disabled people these services are already very much disrupted, inconsistent and out of reach and are often at the end of a three-year waiting list. If the €2.2 billion disability budget is in effect going to stay in the Department of Health it is confusing what exactly is being transferred. Take the personal assistance hours, which is a social model version of home help, which is far more empowering, progressive and aligned with the UNCRPD. If the Department of Health is going to retain the funding for these services, which, again, are not health services, how is the paternalistic charity approach to disabled people’s rights and quality of life ever going to change?

The Minister of State announced recently that the numbers of children waiting on assessment of needs had dropped from 6,000 to 600. However, last week, we heard that they were back up to 4,000. There is some confusion on how that backlog accumulated in such a short time.

The committee made many recommendations in its report, all of which align with the UNCRPD. One was to implement the recommendations of the Ombudsman’s report after it found that 1,300 young people are living in nursing homes involuntarily. I received a very alarming response to a parliamentary question today that brought up a lot of emotions when I realised how little of the 2021 budget allocation had been spent on goals such as decongregation. Of the €4.1 million allocated in 2020 with the objective of decongregating disabled people from living in residential settings when they want to live in the community or independently, less than 25% has been invested. Of the €3 million allocated in 2020 to free young people from nursing homes in 2021, it seems like not 1 cent has been spent. This leads us to wonder what is the point of these announcements of additional spending come October. How can the Government continue to publicise policies that say they will change these injustices yet never put the money where it is supposed to go? It is embarrassing that in Ireland’s initial report under the UNCRPD we list the ratification of the convention as an important milestone as if we did not drag our heels for 12 years and were the last country in Europe to ratify, and that we did not sign the optional protocol at the same time. It does not offer a true picture of the political will that exists to truly and really empower disabled people. As Mr. Gerard Quinn, the UN special rapporteur, told the committee, the delay has been completely unnecessary. The optional protocol should have been ratified at the same time as the convention.

I want to acknowledge the many issues raised by Members. Many were raised at the committee and were reflected well here. One issue which was common to many of those who appeared at the committee is the cost of disability. I acknowledge there have been some increases in the budget for 2022 in some social welfare payments such as carer's allowance, carer's benefit etc.

However, the committee does not think this is enough to address specifically and systematically the cost of disability in line with the objective of achieving an adequate standard of living and social protection, as outlined in the UNCRPD. The committee recommends the introduction of a cost of disability payment to ensure disabled people have the same standard of living as non-disabled people and to ensure alignment with Article 8 of the UNCRPD. The pandemic unemployment payment has set a benchmark of €350 for the cost of living, but disabled people are expected to live on €205 or €208, as it may now be. That is not sufficient. There are many extra expenses for people with disabilities which need to be recognised.

Since its establishment, the committee has been focused on ensuring its work is informed by the lived experience and analysis of people with disabilities, their carers and disabled persons' organisations. This is important to the committee because we believe the voice that disabled persons have actively taken under the UNCRPD must continue to influence and inform policy and be heard by all sectors of society. It is crucial to the work of the committee, in a society which has marginalised and excluded disabled persons throughout time and history. This is the transformative power behind the motto: "Nothing about us without us", which the committee takes to heart.

I acknowledge that the Minister of State and the Minister, Deputy O'Gorman, have been here for the full debate.

It is refreshing to see two Ministers or Ministers of State stay for a debate. It does not often happen. I acknowledge also Deputy Michael Moynihan, in his absence. He plays an excellent role as Chairman of the committee. He is very inclusive and ensures equality among all our members, which we appreciate. We work really well together. I would say we are all proud of the committee to date. It has been a privilege to work with everyone on the committee to build a consensus, to deliver for disabled people, to meet all the disabled people we have met and to hear their stories. They have come in and given up their time to share with us what their lives are like. I hope this committee, working with the Minister and the Minister of State, can make a real difference to their lives.

Let us hope that sensibility might be a bit contagious as well. I call the Minister of State.

I thank the Ceann Comhairle for giving the go-ahead to the Joint Committee on Disability Matters. It was a new venture and one appreciated for allowing that voice into these Houses. I thank committee members for giving me the opportunity to come before them tonight and engage with them.

I am aware that not all senior Ministers might come before the committee. One of the privileges I have is that I can knock on their doors to see how we are working for persons with disabilities. While I was sitting there I was thinking about that. One of the first people I managed to shake down for money in relation to disability was the Minister for Transport, Deputy Eamon Ryan. There was a fantastic inclusion project that involved trikes. I was short €74,000 and the project was €150,000. I asked him if we could split it 50:50 and there was not a second thought about it. I got the €74,000 and now 56 trikes have gone out around the country. That was my engagement with the Department of Transport.

With the Department of Housing, Local Government and Heritage, I looked for inclusion to ensure the voices of persons with disabilities were seen and recognised within the Housing for All strategy. To be fair, it is absolutely there and I thank the three Ministers involved. We decided not to put a percentage on it because we wanted to be ambitious that every housing estate which is built will have universal design within it, as Deputy Leddin said. We will ask and work with the county councils for that to happen.

I met with the Tánaiste on jobs and employment and he has put his whole team there to ensure the comprehensive employment strategies include people with disabilities. Not only that, but he has also put people there who can help me as I try to open new doors to increase employment opportunities. We need to embrace what the pandemic has brought in creating opportunities to work remotely. When he is designing the strategy around his digital hubs, we need to ensure we look at the spaces from a sensory needs perspective so people can work close to home to continue that opportunity. The Tánaiste was totally open to that.

I can only thank the Minister for Public Expenditure and Reform, Deputy Michael McGrath, for the funding he is giving me.

The Minister for Agriculture, Food and the Marine, Deputy McConalogue, gave me my first-ever applied green cert for a young person who wanted to go and do agriculture. He needed a PA, and also needed to take the course over an extra year. The green cert is over two years and he needed it to be over three years. The Minister and Teagasc approved that.

On education, transition planning is where the conversation is at on the Cabinet subcommittee with the Minister of State, Deputy Madigan, the Minister, Deputy Foley and the Minister for Further and Higher Education, Research, Innovation and Science, Deputy Harris. By starting this conversation with young people, we can ensure that when we talk about planning for young people who are in special schools, special classes and special rooms, they have a career pathway and we can meet their needs. The Taoiseach organised the Cabinet subcommittee on education. Now we are starting to plan the transition earlier, as opposed to waiting which leaves the only solution or light for these young people being day services. We are looking at the education and training boards, ETBs, and having further courses in numeracy and literacy. I acknowledge the work of the Minister of State, Deputy Niall Collins, in securing funding for Down Syndrome Ireland of €140,000 so it provide services through six other ETBs, with more to come on stream this year. That is really welcome.

On the higher education piece, young people need support. That is where I see the whole value around PA support. In this year's budget, €3 million was put into these services because we need to give people support. It is about the right to choose where to go to get education, the right to choose where to work., the right to know where they have the support and the right to engage in the community. The only way we can empower people is through that PA support. I acknowledge yet again the role of the Independent Living Movement Ireland, and particularly Mr. James Cawley, who continuously educates me and supports me on that. That is where that funding is going.

I must acknowledge my colleague the Minister, Deputy O'Gorman. He has been absolutely fantastic and supportive all the way through because I straddle two Departments. I am not really in the Minister's Department yet. At the same time, I am two doors away from him. He has so been supportive on it. Deputy Wynne raised this, and the reason I have not moved is I am not prepared to go unless I have all the money coming with me. The transfer of functions is being written up at this moment. The legislation is being crafted on it. I could have gone 18 months ago. I must acknowledge the Taoiseach's vision for seeing why we need to move away from the medical model to the equality and inclusion piece. That was the Taoiseach's design. His only ask of me is to move it from one Department to another, and that is happening, but I am not going without the money. I am not going without the right understanding and the memorandums of understanding with the HSE as to how we work in relation to primary care, what the access programme is and what my aids and appliances budget is. There is €540 million in that, so I am not walking away from it unless I know I can get proper access to the proper beds, supports and wheelchairs people need.

Similarly, we talk about multidisciplinary supports. When that is achieved, if a child is coming through as part of the community disability network teams when he or she has hit his or her goal or got his or her delivery of service, it is about how he or she is integrated back into primary care again. Primary care is so important but it does not rest with me, so I need to know there is a proper understanding of it and a proper agreement. I am very fortunate that the Minister, Deputy Stephen Donnelly, has given me really valuable funding for assessment of needs in the most recent two budgets. However, if there were two Ministers who could not get along, I need to know there is a memorandum of understanding on how that gets sorted out because we are still answering to a single HSE. It is not as simple as just lifting it and bringing it.

The energy is within me to work within the two Departments, but that is coming to an end now because the legislation is going to come before us along with the memorandum of understanding. It will go before the Joint Committee on Children, Equality, Disability, Integration and Youth for eventual sign-off to get the job done. When we move, we will move in our entirety. We will move with parents knowing exactly where the signposting is and where their services are so they are not left in a vacuum. Part of my frustration in the Seanad a week ago related to the fact that I am being told community Progressing Disability Services teams are being set up and I do not want to be told the files are not going with them. That is the piece I am trying to gel together at the moment.

A good piece of work I am doing, which the Minister, Deputy O'Gorman, has supported with funding, is on mapping disability services. Members should imagine a map of Ireland. It is like the ESB one with all the lights on around it. I want to map where my respite is, where my day services are, where the ASD classes are and where our special schools are. Deputies can imagine it overlaid on a map. Then it is about where we can bring in the connectivity so people, most importantly parents, can log on and see where their services are. Where are the 91 Progressing Disability Services teams all around the country? Which is the closest to my school? Which is the closest to the family home? It is that connectivity work which is going on. That is going out to tender before the end of the year.

I turn finally to my constituency colleague Deputy Canney and the autism innovation strategy.

I thank the Deputy again for bringing the Bill before us and allowing 12 months for me to demonstrate the strategy. He is correct that this strategy is no good unless it has a proper action plan that can be demonstrated and measured and we can hold the various Departments to account. The strategy will sit on a minimum of four pillars - housing, health, employment and education - and Deputies will see how I have engaged with the relevant Departments to date. We want to see where the roadblocks experienced by parents are, an issue raised by Deputy Wynne. We need to unlock all those roadblocks, which were in place long before any of us came into this House.

What my colleague, Deputy Leddin, described in his trip to the Netherlands should be our vision and ambition for Ireland. That should be so normal that we do not see the difference. We need to unlock people so they can access that. Transition planning is a key unlocking factor. The personal assistance, PA, support is part of it, as is active travel. We need to ensure county councils have a clear understanding of what active travel is. It is not just for people who are able-bodied and can access it; it is active, inclusive and universal for everybody in the community. We are very fortunate with the funding that is in place for active travel. It needs to be better accessed and councils need to move away from the idea that the definition of inclusivity is putting another bit of blue paint on wheelchair parking spaces. That is not inclusivity but it is their train of thought.

A few weeks ago, I put funding in place for my disability participation and awareness fund, DPAF. Deputies should see what has come to me from the county councils regarding it. It is about creating training and awareness in the councils. Their staff should know about that already, in addition to knowing a lot about disability. I should not have to use my funding, which is about inclusion, to repaint blue boxes. I want ambitious plans coming to us and to complement other funding that is already in place. I want to see that ambitious piece in disability, but I can only do that with the good work Members are doing on the Joint Committee on Disability Matters. Every week, they bring in a cross-section of voices from the disability sector, including advocates and representatives of disabled persons' organisations, DPOs, and various organisations. That feeds back to me because I watch the proceedings every single week. I compliment and thank committee members for their work. Finally, I wish Deputy Moynihan a speedy recovery.

The Minister of State has an infectious enthusiasm for her job. I am afraid we do not often come across that.

Question put and agreed to.