Joint Committee on Disability Matters díospóireacht -
Thursday, 11 May 2023

Disability Inclusive Social Protection: Discussion

An Cathaoirleach

Apologies have been received from Deputies Cairns and Leddin, and Senator Seery Kearney. Today's meeting concerns disability inclusion and social protection. I welcome, from Rehab, Ms Lucianne Bird, director of learning; Mr. Adrian Stewart, head of employability; and Mr. Michael Meere, a Rehab group advocate and student in the National Learning Network; and Ms Zoe Hughes, senior policy and research officer, Care Alliance Ireland. Joining us remotely are Professor Eilionóir Flynn, director of the Centre for Disability Law and Policy, and Mr. Alradi Abdalla, senior training officer at the International Disability Alliance. They are all very welcome and we look forward to the discussion.

I remind witnesses they should not comment on, criticise or make charges against any person or entity outside the House in such a way as to make him, her or it identifiable. Persons giving evidence from another jurisdiction should be mindful of the statutory regime they are in. If they are directed by the Chair to cease giving evidence, they should do so immediately.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person outside the House in such a way as to make him or her identifiable. Members joining us remotely can only contribute if they are within the confines of the Leinster House complex.

I invite Professor Flynn to make her opening statement.

Professor Eilionóir Flynn

I thank the Chair. It is my pleasure to make this statement on behalf of the Centre for Disability Law and Policy at the University of Galway on the subject of inclusive, human rights-based social protection for disabled people. In accordance with Article 28 of the UN Convention on the Rights of Persons with Disabilities, the purpose of social protection measures is to ensure an adequate standard of living for persons with disabilities. This component of the convention’s broader purpose is to ensure the rights and dignity of disabled people are fully respected in society. As such, social protection measures must ensure that disabled people do not fall below the minimum floor necessary to maintain a life of dignity. To achieve this, it is important to carry out a comprehensive review of existing social protection measures for disabled people in Ireland and consider how they can be reframed.

Many of the existing social welfare payments, such as disability allowance and blind pension, were first introduced on the assumption that disabled people could never work on the open labour market and needed financial compensation for their impairment. While we know such beliefs are outdated and clearly wrong, we still need to interrogate why paid employment is viewed as the main mechanism through which we, as a society, value human endeavour and determine who is deserving of social protection. For this reason, it is important to explore social protection mechanisms that are not based on a medical model of impairment, nor on a fixed notion of contribution to society, such as universal basic income schemes, and consider how these might apply or be adapted to ensure full equality for disabled people. At the same time, we must recognise the additional costs disabled people face, regardless of their employment status, including higher energy costs, transport, and specialised equipment, many of which are not currently met through existing social protection schemes. The notion of a cost-of-disability social protection payment has been recommended in Ireland as far back as the report of the Commission on the Status of People with Disabilities in 1996, yet that has still not been progressed, despite economic evidence of its necessity and utility.

It is important to acknowledge the need to radically overhaul systems of assessment for disability-based social protection payments. Such payments have been criticised in several countries by the UN Committee on the Rights of Persons with Disabilities for being overly medicalised.

Many of the measurements used for them are based on a static understanding of impairment, assuming that the person's experience is the same from day to day. For many disabled people, however, the tasks they are able to do vary dramatically from day to day due to a wide range of factors, including the environment and the supports available. Not everyone's impairment is the same each day. We need to recognise this in the measurements we use for social protection and in the supports we provide through our social protection system. The WHO has attempted to address these issues with medicalised assessment in its new Disability Assessment Schedule 2.0. While this is not a perfect system, it should be explored for adaptation in the Irish context. It focuses on the functionality of disabled people - what they can do and what they can get with assistance. For all these changes, it is important to engage directly with disabled people, through organisations led and governed by them, to ensure that changes to social protection schemes adhere to the principle of "nothing about us without us", which is a core part of the global disability movement and underpins the UN Convention on the Rights of Persons with Disabilities, which Ireland has committed to by ratifying.

I thank the committee for its attention. I will be happy to answer questions once we enter that part of the session.

Ms Lucianne Bird

Good morning. It is a privilege to address the committee, and I commend members on highlighting the many issues affecting people who are disabled. I am the director of training with the National Learning Network - Rehab Group. I am joined by my colleagues, Mr. Stewart, head of employment, and Mr. Meere, a member of Rehab's advocacy committee, a student in our National Learning Network, NLN, division and a person with lived experience.

The Rehab Group provides services to more than 10,000 people, championing diversity and inclusion in education, training, employment and communities. The NLN is our supported education division. We deliver inclusive education that is accessible to all students. We support almost 7,000 students each year, aged 16 years and upwards, across further education and training, FET, and higher education. RehabCare delivers health and social care services across Ireland, providing resource centres, respite, residential, supported accommodation, outreach and home-based services. Our social enterprise company provides employment opportunities and has recently developed an innovative model of supported employment called the transitional workforce, which will provide placement and support services, creating vibrant partnerships with the business community to provide sustainable employment opportunities for people with disabilities. This model will be developed further.

We are advocating on behalf of the 10,000 people who use our services, their families and carers concerning the various issues they have highlighted about surviving financially on current social protection payments and where they are struggling with the current cost-of-living increases, especially for those who are living independently.

One-size-fits-all eligibility thresholds and benefit levels can create significant barriers to accessing social protection supports. Conversely, an individualised approach that takes into account the unique circumstances of people with disabilities can promote increased participation in society. In 2021, research commissioned by the Department of Social Protection into the cost of disability estimated that the average annual costs of disability ranged from €9,500 to €11,700 per household. These averages do not account for geography and type or severity of disability and there was no differentiation between payments to recognise these variations.

Accessible training and education is a first key step towards economic inclusion for many. Conversion of social protection payments into training allowances can be a disincentive to engagement, as is a lack of adequate meal and clothing allowances.

Employment is another critical component in addressing the cost of disability. At 33%, Ireland has the lowest employment rate for people with disabilities. People with disabilities in Ireland experience barriers to accessing and sustaining employment, including infrastructural barriers, negative stereotypical perceptions and loss of secondary benefits.

Personal assistance supports are critical for independent living and can literally be life-changing. However, there are many inadequacies in this respect, including the amount of support being insufficient to cover actual needs, geographical disparities in the availability of personal assistance services, long waiting times, a lack of awareness regarding the availability of the support, and funding deficiencies for the type and level of support required.

Based on the feedback received from those who use our services, their families and carers, we recommend: a more individualised approach to eligibility thresholds and benefit levels that includes the introduction of a disability passport to access all benefits; moving away from an incapacity-to-work medical model that focuses solely on a person's diagnosis or impairment and instead considering strengths, skills and support needs; adopting a universal design approach in the design and delivery of social welfare programmes and services; the implementation of social protection schemes to cover the costs of disability using needs-based mechanisms that are not means-tested and not based on prior contributions to social insurance schemes; incentivising attendance in training and education courses; stopping the conversion of Department of Social Protection allowances into training allowances and instead providing cost-based additional allowances to cover the travel, meals and clothing associated with attending training and educational opportunities; allowing tax offsets for people with disabilities in employment or self-employment to cover the additional costs of disability; no reduction in secondary benefits while in employment regardless of duration of employment; a refocused attention on the role and responsibilities of employers and learning from good practice in other European countries, for example, the increased use of quotas in the private sector, social clauses for companies undertaking work for the public sector, and-or legal enforcement of Article 20 provisions; and revising the provision of income support based on contributory benefits to ensure that people with disabilities are not disadvantaged by having reduced PRSI contributions.

I thank the committee for its time. I ask Mr. Meere to make his opening remarks.

Mr. Michael Meere

Good morning. I am from County Clare and I am a student at the National Learning Network in Raheen in Limerick. I thank everyone here today for the opportunity to speak about issues affecting people with disabilities in Ireland. I will focus on two of these issues - the cost of living with a disability and employment for people with disabilities.

I was a mechanic before my bike accident. I have had bones broken and spinal injuries. I have traumatic brain injury, Cauda equina syndrome, fibromyalgia and epilepsy, all which are not apparent. Sometimes, though, I require help and patience. I do not have a wheelchair, but I sometimes use a walking stick when I need to. Pain is a feature of my everyday life, one I have to manage.

I struggle to pay for the extra costs associated with my disabilities and I need help most weeks from my family. This adds to the anxiousness that I already experience. My medication is not entirely covered by the medical card. This adds an additional expense monthly. I have additional travel expenses, as my mobility and exhaustion require careful planning of trips. I am sure committee members can empathise with not being able to buy clothing, food or heating, and this is before you consider the impact of a simple thing like not being able to go to the cinema or socialise with your partners or friends.

I went back to university following my accident. I needed to retrain and upskill. I did this with additional supports and accommodations. Without those supports and accommodations, I would not have been able to complete my course. When I finished college, I got an intern job. I was medically assessed and deemed eligible for the partial capacity scheme, retaining 75% of my original payment and my secondary benefits for up to three years, after which there would be another assessment and the possibility of then being exited from the scheme.

This is very discouraging for someone who will continue to deal with the pain and expense of having a disability for life. Without these supports and accommodations I could not live on my income. I have the option to reapply, but for someone like me it adds to the stress and torment having to go through this process again and again. You do not lose your disability, but you could lose your payments. Thanks for taking time to listen to me. I am open to all questions.

Mr. Alradi Abdalla

I am happy to get this opportunity to brief the committee on social protection. I am speaking on behalf of the International Disability Alliance, which is a global alliance of organisations of persons with disabilities, OPDs. OPDs are prioritising social protection as a component for achieving the sustainable development goals. Social protection is instrumental in mitigating poverty, vulnerability and social exclusion, and strengthening these systems is crucial for fulfilling the 2030 agenda. Persons with disabilities often encounter significant expenses with respect to money, time, and support due to the inaccessibility of infrastructure, communications, and decision-making. Many people with disabilities live on the brink of poverty because of the lack of economic safeguards provided by social protection. These can help to address this issue. However, existing mainstream social protection programmes often fail to include persons with disabilities in their design and the cash amounts provided are inadequate to cover the costs persons with disabilities and their families incur due to multiple barriers to participation. In some countries, policies disqualify persons with disabilities who work from receiving benefits, despite the allowance's potential to support more people to enter the workforce. Additionally, social protection programs often take a one-size-fits-all approach rather than being responsive to the diversity of the disability movement. This approach neglects the evolving requirements across the life cycle. Moreover, social protection is frequently inaccessible due to medicalised disability assessments that exclude those who may need it most. Countries should implement disability assessment systems that are easily accessible across borders and focus on functional challenges and participation support requirements.

To address disability-related extra costs and break the vicious cycle of disability and poverty, a disability-inclusive social protection system consistent with Article 28 of the Convention on the Rights of Persons with Disabilities should combine accessible mainstream services, cash transfers and various forms of concessions. These schemes should aim to maximize full and effective participation and enable persons with disabilities to thrive and not only survive. The implementation of a universal individual disability allowance which pays disability-related costs, consistent with work and other basic income security schemes, could be a significant step toward the system we are aiming at. It is essential to ensure social protection systems facilitate access to income security, health coverage, education, support services, are responsive to the local context, are built on a human rights-based approach and contribute to the inclusion and participation of persons with disabilities. Social protection should acknowledge the diverse needs of persons with disabilities throughout their life cycle. It should also be responsive to the extra disability-related costs as well as the support services required by persons with disabilities.

As social protection systems receive increasing investment, it is vital to ensure their sustainability, responsiveness and disability inclusivity. At the International Disability Alliance, we stress that it is crucial there is participation of persons with disabilities through their representative organisations in designing these programmes because those persons have the experience to evaluate and correct the national systems to be more inclusive for persons with disabilities. They will also reflect the diversity within the movement with regard to gender, ethnicity and different intersectionalities. I thank the committee. It is a great pleasure to be given this opportunity.

Ms Zoe Hughes

I wish members of the committee a good morning. I am pleased to be here to represent Care Alliance Ireland and make this statement and I thank the committee for the invitation. For those who may be unaware of the work of Care Alliance Ireland, we are an umbrella organisation and our 95 member organisations are drawn from across the caring, disability, addiction, mental health and chronic illness sectors. We provide research, policy and governance supports to our membership as well as providing online supports to a growing number of family carers across the country.

As an organisation, our vision is that the role of family carers is fully recognised and valued by society in Ireland. While our focus is on the family members who support and care for their friends and loved ones, we understand that in improving access to appropriate services and supports for disabled people, the lives of family carers and the family system as a whole is improved. I am not here to speak on behalf of disabled people. Caring and disability can be seen as two sides of the same coin and are closely related, but each have their own particular challenges. The challenges faced by disabled people are not the same as those faced by family carers, although they often overlap.

In simple number terms, we have seen research published recently which highlights the significant economic impact that disability and caring has on a family. From the Department of Social Protection’s own research carried out by Indecon in 2021, we see this figure estimated as being up to just under €12,000 per year in additional costs, as was already referenced. Similar figures come from research undertaken and published by Family Carers Ireland in 2022. In this brief opening statement, I have two points I would like to make in answer to some of the questions and proposed topics posed by the committee in its recent communications to us. I am of course happy to discuss other matters as they come up during the morning.

We were very interested to see a proposal for moving away from an incapacity-to-work approach to supports to incentivise work. For the purposes of social protection, family carer and disability payments are considered together, which creates an interesting case for discussion.

As the committee will know, carers allowance and carers benefit are payments made to family carers providing significant levels of care, which can limit their ability to work in the traditional paid workforce. The Department of Social Protection positions these payments as an anti-poverty measure rather than as a payment for work undertaken. However, family carers are the only group in receipt of a social protection payment who are required to work significant hours each week to receive a payment and yet are not acknowledged as working. If a household has another source of income, due to the means test, they may not even be eligible for carers allowance, leaving some family carers increasingly economically dependent on their partners or other members of their family. This is the case when many family carers report that they are providing significant levels of care 24 hours a day, seven days a week. Incentivising work is not an issue here. However, recognising the economic value of that work, which saves the Government up to €20 billion per year, is. Many family carers are frustrated that they are seen as not working because they are in receipt of carers allowance or benefit.

We believe that the current system of means testing carers allowance, which has not changed significantly in its organisation or execution in many decades, is not fit for purpose. We welcomed the increase in income disregards for the means test in budget 2023, for which we and others have been advocating for a number of years. However, the time has come for a radical rethink of how family carers, many of whom who have given up paid employment entirely, can be protected from poverty and acknowledged as making a significant contribution to society. The concept of a universal basic income or participation income for family carers must be seriously considered. We have seen how this can be managed for artists, which is to be welcomed. I am not here to pit groups against each other, but simply to highlight how sectors can learn from each other to create appropriate responses.

There are many other points to make which I do not have time to fully discuss in this opening statement. Key among these is the intersectional nature of caring, in particular as it relates to disability. There are many family carers who are disabled, who have long-term mental and physical health conditions, and who are doubly impacted by the siloing of care and disability.

I acknowledge that many family carers are no doubt listening to this conversation live, or perhaps finally getting around to doing so after a long day providing care for their loved ones. It is important that their contribution to ensuring that the mental, physical and emotional health needs of their family members is acknowledged and valued, over and above platitudes and written statements. Many family carers are struggling economically at present. We acknowledge the efforts of this committee to find new ways of supporting them.

Deputy Jennifer Murnane O'Connor

I thank the witnesses for their very powerful statements. What collaboration is needed across sectors under the UN Convention on the Rights of Persons with Disabilities implementation to realise an effective disability-inclusion social protection model? What changes need to be made in the linkages between social protection schemes and the provision of the relevant services such as education, early childhood development and the economic empowerment?

The witnesses spoke about the need for the introduction of a disability passport in Ireland to access all benefits. What measures are needed to introduce this? While I would welcome it, how would we go about it? How do we start the process?

Mr. Meere noted that a person does not lose their disability, but they could lose their payments. I ask him to discuss this further in terms of the incentives, given that he lost his secondary benefits when he accessed employment. I regard that as unacceptable. As he said, he has worked for a few years and now the system requires him to be assessed again. There is no need for that and it should not happen.

We spoke about the need to individualise an assessment tool for the care of older people. How can this be developed for people with disabilities? While we welcome that people are living longer, that brings significant challenges for the system. We really need to have something in place for that.

I and others have stated previously that it is unacceptable for carer's allowance to be means tested. Carer's allowance should not be means tested. There is considerable goodwill out there. Many families are doing this 24-hour-a-day job and because two incomes are coming into the house, the person is not getting the carer's allowance, which is unacceptable. The care that carers are giving to a family member or a friend is saving the country millions of euro and yet we do not appreciate the work they do. That is a huge bugbear of mine.

I was working with a lovely man recently. His son had several underlying issues. Because of his illness, he needed to go abroad to get the sun. When he came back, he received a bill to say he owed thousands of euro. He had to go away because his sickness was so bad that the only cure he could get was from being away and being in the sun. However, we do not allow that. For medical reasons, he had to leave the country. I have been fighting with the system to point out that he was abroad for medical reasons. He is getting a disability payment, cannot work and is genuinely sick.

As previous speakers stated, nearly everything in the system is now challenged. We need to stand up for our carers and stand up for the payment of a disability allowance or whatever payment. They all need to be looked at. We are in a cost-of-living crisis. Many families coming to my clinics are not making the payments they need to make because they cannot afford it. It is a major issue for us. I know we speak about it here all the time.

I again thank the witnesses. I am very proud of the rehab centre on the Killeshin Road in Carlow. I know all the staff and all people who attend it. The students get great service. I go to see their play every year and there are great singers and everything in it. The way they all mix and the way they are a community in themselves are so important. I see it there because I visit it regularly. I again congratulate all involved. There are major challenges. We all need to ensure we fight these challenges. No one should be living below the poverty line. Through no fault of their own they are on a payment and we need to ensure they have the proper payment.

Ms Lucianne Bird

I will respond to some of those. I thank the Deputy for her questions and for her positive comments, which are very much appreciated. Our organisation works with many people with disabilities across the broadest plethora of services, including respite care for children and residential care. We offer a range of supports on the care side, including education, training, bridging and transitional programmes from school to vocational training. We provide supports in higher education for students, who have health challenges and are struggling, to keep them engaged in their higher education. We also have supports into employment, an area we are working on. We are involved in a very broad range of services.

We recognise the diversity and that each person has a different set of needs and challenges. There are differing demands on each of them and their families. Every day we hear the comments the Deputy made about the difficulties in the system. The people, families and students coming to access our services are exhausted from trying to work through the system. They are really challenged by having to go through the same process repeatedly to access basic services. I suppose that answers both questions to a degree.

A joined-up approach is needed. Most of the students attending educational settings who come to us need some level of support funded through the HSE. It is critical to get the Departments of Education and Health to speak to each other. The Department of Education cannot provide all the funding. Some funding needs to come from other Departments. We need cross-sectoral government interaction and intervention across Departments, recognising what is creating barriers for people to move on from their second level education to the next stage of their education and then into employment, and the kinds of supports that need to continue with them throughout their lives. No single Department can provide everything. We are clear on that and we constantly advocate for that.

Mr. Meere can speak eloquently about the disability passport.

I have a sister with a physical disability. She has worked all her life but she has had to repeatedly be approved for benefits on an ongoing basis. As Mr. Meere said, people do not lose the disability but they are constantly at risk of losing the benefits. If people have a disability passport, that says they have a disability and it should enable them to access a range of services without having to constantly reapply and make submissions for every small social protection accommodation or support that is available. Those are the key points. I hope that is starting to answer the Deputy's question. Maybe Mr. Meere would like to add to that.

Mr. Michael Meere

I thank Deputy Murnane O'Connor for all her kind words. I am passionate about this because I have had a disability since 2007. Initially, I was put on disability allowance and then I had to fight to get the invalidity pension. When I got the invalidity pension, I re-entered college. After that, I was greatly supported through college with all the accommodations and supports which I mentioned. Within the National Learning Network, NLN, which I am in now, I am greatly supported too. However, when I went to re-enter the workforce, I was reassessed for partial capacity. That is either assessed at mild, moderate, severe or profound. One is assessed at whichever level and re-enters the workforce for three years, then gets secondary benefits, which is fantastic. However, after the three years, one is then reassessed, which straightaway brings about anxiousness. People get worried and frustrated at the whole system because, as Ms Bird just said, without the presence of a passport for disability, people have to go through all the channels again, meet all the consultants again and meet all the doctors again. People could be waiting for two months to get an appointment with a consultant. This puts people through further stress. They are already anxious because of their conditions but this compounds it.

It is all fine and well for people to work for three years, have secondary benefits, and then be reassessed. If people are in the workforce with an employer and everything is going okay, the probability is quite high that they will lose their secondary benefits and 75% of their invalidity pension. This then leads them to live life with a wage which is probably minimum wage. On top of that are the figures Ms Bird just mentioned, of €9,500 and €11,700 in household expenditure every year on top of just getting a minimum wage. It is just not good enough and it is really hard to survive. As Deputy Murnane O'Connor mentioned, with the current cost-of-living crisis, costs are through the roof. Nothing is moving. We are still getting what we get. We get the likes of the €200 benefit but that is spent when we go to do our weekly shopping.

Everybody receiving disability allowance was granted €500. As I said earlier, I am a student at the National Learning Network. There were many people in my centre who were informed that morning that they were not getting their €500 because they were on training allowances. We had to do a massive push to email and lobby Deputies. In the afternoon, it was changed. Some of the parents and some of my fellow student colleagues and friends were affected. Deputy Murnane O'Connor explained about rehab in Carlow a while ago. There is a sense of community within that. We were all shocked and frightened. Whether you believe it or not, €500 is a lot of money to us. Even our weekly allowance does not spread across everything. Outside of everyday life, we have expenditures such as extra medical costs since we have to go to consultants. One consultant appointment costs €250 or more and it might only take two minutes. It is quite hard.

Deputy Jennifer Murnane O'Connor

The other thing the witnesses addressed is that all their medication is not covered on their medical card. I have huge issues with that. I think all their medication should be covered by the medical card. We as a committee need to fight for that. They should not have to pay for any medication. It is unacceptable.

Mr. Michael Meere

Yes, 100%. I have a word on that topic and then I will let everything move on. I get pain injections. They cost €350 per injection. I was getting them privately because I could not get them on my medical card. I spent a full year fighting with a HSE management person to allow me to get my injections on the medical card. I am getting my first next month, after three years and many trips to the pain specialist to pay €350 per injection. I can verbalise what I have to say and I can write emails but many of my friends cannot do that. Many of their families and carers cannot do that. I am blessed in that I can do that but it should not have to be done. It is a basic, fundamental right under various conventions.

Deputy Jennifer Murnane O'Connor

Well done.

Ms Zoe Hughes

I thank Deputy Murnane O'Connor. I wanted to say one thing. She asked about the care assessment for older people with disabilities. Can I clarify if that is the carer's assessment?

Deputy Jennifer Murnane O'Connor

Yes.

Ms Zoe Hughes

The carer's assessment for older people is part of that. I believe it is still at the pilot stage. I started in Care Alliance Ireland in 2015, so I have been in it for eight years, and that system had started before I came into the post and is still in the pilot stage. I am not certain of where it is. I have not had an update in a while. It is slow-moving. If people are caring for somebody over the age of 65, they should be eligible for that regardless of whether the person they are caring for has a disability and is ageing into being over 65.

Anybody who knows me knows that intersectionality is a bugbear of mine. It seems the systems do not know how to account for it. As I said in my opening statement, many family carers are themselves disabled. There are also many disabled people who have mental health conditions separate from that who then develop dementia. I have seen that in my own family. For example, my mother-in-law cares for her sister who has complex disabilities and has developed dementia in recent times. It is almost as if there is a lack of understanding that people can have multiple things going on at the same time. The system seems to struggle with that. I am not entirely sure how that can be fixed because I have been trying to do it for a long time. That is my answer to that. I do not know where it is. I do not know exactly how it could be operationalised but I know there is much siloing within the systems. To be fair to the Department of Social Protection, it is probably one of the best Departments to work with in that way, and certainly with regard to carers' issues. We found it very helpful. That is not to say other Departments are not but it is worth noting. That is really the only thing I can think of in response.

Deputy Jennifer Murnane O'Connor

We need to highlight and work on it as a committee. As Ms Hughes said, it has gone on for too long now. Many people have been asking me about it. I am trying to get information on it myself. We need to address it.

Deputy Pauline Tully

Good morning. I thank everyone for coming in and sharing their experience with us. I would like to ask Mr. Meere the first question. I was recently talking to a young man who had a stroke about a year ago. He received wonderful supports when in hospital, especially in the National Rehabilitation Hospital, but when he was discharged and went home, the support system disappeared. From the witnesses' experience, what are the supports like? He was getting intensive physio and other supports. Now he has had two sessions of physio and he had to fight for those. Were supports available for Mr. Meere to get back into the workforce? How difficult was that? Did he, as we hear all the time, have to fight for everything that he needs?

Mr. Michael Meere

That is a very good question. I have been in the National Rehabilitation Hospital in Dún Laoghaire on two occasions. It is a wonderful place.

Every intervention one could need and ask for is inside under one roof. Sometimes, when a person has a stroke or heart attack or anything like that and needs interventions, there is a timeframe for them to get those interventions. If they do not get them within that timeframe, there are very poor timeframe issues. Dún Laoghaire was great, but when I came home, I experienced the exact same thing. I had to fight to get physiotherapy. Psychology was basically important, but I could not get it where I live. I could not get it, plain and simple. It was not provided for. Occupational therapy, OT, was a non-runner for me. They came once and that was it. I had to fight for everything. I attended Acquired Brain Injury Ireland but that is not the same level of intensive intervention one needs. That timeframe is vital. We will take head injury as an example. Let us say a head injury happens this year. Recovery is not over in one year. It is not over in two or three years. From my own experience, it is not over in ten years. People need the interventions all along that path. The way it works in this country is that once a person has received them on a couple of occasions, he or she is kind of considered grand and they say, "Off you go". That is wrong.

Another point I need to make is that when I was in college, I had all of my accommodations and supports. When I was with the National Learning Network, I had them plus I had psychology, physiotherapy and all that. When I went from that to partial capacity, I was let into the workplace with not one support whatsoever. Not one person from social welfare or any other agency rang me and asked if I was okay or whether there was anything they could help with or any course I could do to make it a bit easier for me. It would have been great if they had contacted the employer too and asked the employer whether there was anything they could do to help this person to stay in employment in a longer timeframe. There is a total lack of supports in this country.

Ms Lucianne Bird

I will make a very quick comment. We have developed Quest Brain Injury Services in County Galway, which is funded through HSE community healthcare organisation, CHO, 2. It offers a tremendous step-down facility for people with acquired brain injury, stroke, accident trauma or whatever. We offer a service to 67 people for less than €300,000 per year. That model could be replicated across the different CHO areas, although it is underfunded at that level, quite frankly. It could be replicated, however. It offers a range of multidisciplinary supports to which we have access. It is not huge access but there is access to speech and language therapy. We have psychology and occupational therapy built into the model. We have employment access and people who work as job coaches with people. People have access then to the opportunity to acquire qualifications. We support people to attend the University of Galway, Atlantic Technological University and all the third level facilities. It is, therefore, a very innovative, effective and cost-effective model. That could be rolled out across every CHO to provide the kinds of supports about which the Deputy asked. It would ensure that people coming from the National Rehabilitation Hospital have a step-down facility and model that would cushion the move from that intensive therapeutic to tertiary therapeutic intervention in the community. That is something that could be considered as a very cost-effective and immediate response to that question.

Deputy Pauline Tully

That would be really important because it would help people to recover and get back into the workforce or education or whatever it is. Ms Bird spoke about a disability passport. That would be a very good idea. We hear from students in primary schools who say the supports they get there follow them into secondary school but after that, they do not. Third level colleges and institutions are usually fairly good at providing supports as well, as Ms Bird said. Then, however, people have to go and look for something again if they go into the workforce or change workplace. They have to go looking for the supports again whereas the supports really should go with the person.

Professor Flynn and Mr. Abdalla mentioned the disability assessment system and accessibility across national borders. The WHO has a disability assessment schedule. I want to expand on that. We need to evaluate the whole way that social protection is allocated here. We need to re-evaluate it and ask what the purpose of social protection is. It is almost as if no matter what payment a person is receiving, there is a punishment element to it. If a person does not attend a meeting with the job coach or whoever, he or she could lose a payment or have a payment reduced. That is just for jobseekers; we are not even talking about disability.

Professor Bird spoke about having a payment that addresses the cost of disability before a person can go to work. People are almost disincentivised to go to work because of the possibility of losing that payment and the secondary benefits, of which the medical card is a huge one. The whole thing needs to be re-evaluated. That applies to carers as well. On that point, are there good examples in other countries of a system that works for people that could be replicated? There is no point in reinventing the wheel. It might be something that could be rolled out across Europe or whatever.

Ms Lucianne Bird

Much research has been done at European level that would indicate this. Scandinavian systems are far more progressive. Equally, we must recognise that Ireland has a small population with limited resources and lots of need. We recognise that. When we see people are not taking the option of employment, or not even taking the option of education initially because of the fear of losing social protection measures or that disincentive in terms of secondary benefit, that really indicates a system that has to be reviewed and reformed.

An Cathaoirleach

We will go to Mr. Abdalla for comment.

Mr. Alradi Abdalla

I will start around this point of employment and the disability-related cost. There is the whole idea in the International Disability Alliance that we are not only advocating for disability-inclusive social protection. We also advocate for disability-inclusive social protection that contributes to the inclusion of persons with disabilities. We look at having persons with disabilities as part of the system but who also come out of the system and contribute to the inclusion. I will explain what I mean by this and draw on my personal experience as a person with a disability.

If I stay home and do not go to work, I will spend less. For example, let us say I am receiving €200 per month. I will stay home and just consume my basic income needs. If I decided to go out to work, I will spend by far more than that because I will need a personal assistant to guide me. I will need assisted devices to help me and assistance with transportation to go to my place of work. Therefore, actually having disability allowance conditioned by working status will contribute to the exclusion of persons with disabilities. It will encourage me to stay home because I will minimise my expenditure. That means that if the Government guarantees that if I go to work, I will still receive my disability allowance, I will be encouraged and incentivised to do so because what I would receive from work will still be of value as I will receive additional support to cover the disability-related costs. In summary, persons with disabilities would be in a position to go to work more than stay at home. We need social protection to contribute to this to encourage persons with disabilities to engage in the workforce.

With regard to the disability assessment, the Committee on the Rights of Persons with Disabilities has provided many recommendations about how the assessment should move away from a purely medical assessment to one that recognises the needs and requirements of persons with disabilities and the functional limitations. In this regard, the committee is in the process of devolving the tools that do not fully focus on the medical approach but rather start with social workers who could do the initial phase with some tools.

In certain cases they could not go further by providing the certificate. They could go for medical practitioner. At present, they only rely on social workers who could carry out the test and apply the tools. I can share details of this and share channels for the communication of this experience after this meeting.

Professor Eilionóir Flynn

There are a number of things we can do almost immediately. Keeping in mind what the other speakers have shared, we do not need more research, pilots or processes around this because we have had those for decades and we know the evidence base is there for change. We have seen the way that social protection payments were able to quickly adapt in response to the Covid-19 pandemic so there is no reason they could not quickly adapt. It is not even quick, because as others have said, we have been talking about these problems for a long time.

One key area where we could immediately see change is in the likes of the income disregards that have been mentioned by Ms Hughes already in the context of carers but that could also apply in the context of disability allowance. We could also start to work on decoupling some of those secondary benefits and ensure that if the person has a need for those, they are provided regardless of their employment status. That would be important and it would give people the reassurance that basic needs related to their disabilities will be met. It might be easier for people to seek employment or to participate in different ways if those basic needs are being met. Those are simple things that can be done initially.

On what we can do to look to other countries and their good practice, apart from what Mr. Abdalla has already shared about the International Disability Alliance's work, it is interesting to look at other countries that have implemented universal basic income pilots. There is a lot we can learn from those in terms of the ways in which disabled people were included in those pilots or sometimes disadvantaged in those pilots that we can learn from and think about in our context. In Ontario, Canada, for example, there are a lot of lessons from the pilot project on universal basic income, which included disabled people but they lost a lot of their secondary benefits. For some people, that was okay because the amount of the basic income they were receiving was enough to compensate for that but others did not opt into the scheme because it would not have been financially viable for them to do so. We need to consider that.

Simon Duffy and Jim Elder-Woodward have a useful paper on what they call universal basic income plus, which looks at how you could compensate for some of those extra costs related to disability, caring obligations or other criteria, in addition to basic income, and develop a model along those lines, while learning from the experience of the independent living movement in the UK. There is also a lot to be learned from the national disability insurance scheme in Australia, which has had significant problems in its implementation due to the bureaucratic complexity of the model but the intention of the model is a positive one and one that Ireland has a lot of potential to learn from. That is especially so in learning from disabled people who have experience of that model, rather than the bureaucrats simply operating the model. There is a lot of valuable evidence being gathered by activists on the ground that shows some of the limitations of the way that model has been rolled out that we could learn from in making progress here. Those are my interim and short-term suggestions. If we want to learn from other jurisdictions, rather than repeating the same mistakes, those are the areas we could learn from.

Mr. Alradi Abdalla

I would like to add to that. On the basic income security, we need to recognise that all the time the basic income security is paid to cover the basic needs of human beings, regardless of their disabilities. We need to always have these things together, including disability allowance that could care for disability-related costs. In many cases, disabled people have to access one or another so they cannot access either. In simple words, they have to only care about their basic needs or their disability requirement needs. We have to have both schemes; a basic income security scheme and a disability scheme going together to share both care needs.

Senator Tom Clonan

I thank the witnesses for coming in. One of my sons is a wheelchair user and some of his services are provided by the Rehab Group. The people who come to us from the Rehab Group, without exception, are all wonderful. They are from Ghana, Nigeria, the Philippines, Korea and all over the world. They are all the most amazing people and the guy who organises for us is called Fauzi. Every time I ring the Rehab Group and talk to Fauzi he asks me how I am, so he recognises the caring dynamic.

I have a few observations. I thank Mr. Meere for his evidence, for coming here and for taking the time. I mention the business of having to prove over and over again that you have a disability. You never lose your disability but you might lose your benefits. We have had this experience in every aspect of life, for example, when we go on holidays every year. Imagine that; it is such a novel idea. Every year I have to write to the airline and every year the questions are different. They ask what the weight of the wheelchair is and what the dimensions are. They ask how old the dog is and say that if it is over ten it cannot go on an aircraft. Every year they come up with a different question to the extent that I wonder what they will ask us this year. I remember there was no assistance at the door of the aircraft so I lifted Eoghan off the wheelchair and put him in the front row of seats. I went back to get his wheelchair and the cabin crew said that once I was on the aircraft I could not get off it. I asked them what we would do about his wheelchair and they asked if he would need it. I said that unless Jesus Christ was on board and we had a miracle at 38,000 ft, he would absolutely need it. You constantly face this.

When you eventually get a medical card - I do not know if Mr. Meere has had this experience - you get a letter from the HSE saying that your medical card has been reviewed and you have to reapply for it. There is a link in the letter that you follow and you discover that there is no option on the link so you have to ring them up in the medical card services and they say there is no link and you have to start again as if you are applying for the first time. I ask them why the letter does not say that.

When the public services card as a companion for travel arrives, you jump through all the hoops and then you get a letter saying it has been reviewed and you have to reapply for it and prove all over again that you need all this assistance. I would be interested in what Professor Flynn has to say about this. Every agency I deal with, with few exceptions, consists of people who have chosen to work in those areas and every time you engage with them they come up with obstacles.

I mention the effort of getting your socks on in the morning. The dog helps my son Eoghan get dressed and it is like the Olympics trying to get your clothes on. Last week he went past a coffee chain that had street furniture out and he went a bit too close to the kerb and the big power wheelchair fell off the kerb and flicked over onto its side. There was a concrete bollard next to the kerb that he hit his head off. It was a miracle he did not fracture his skull or break his neck and it took several people to get the wheelchair upright again and it knocked him off his perch. Yesterday he told me he will go back to that coffee shop. He worked up the courage to go back to that coffee shop and go past it, to overcome his fear. To put obstacles in the paths of people like us; I do not have any words for it. I mention the passage from the Bible about putting a millstone around people's necks and throwing them in the ocean. These people should be ashamed of themselves.

In addition to a passport for disability, should there be a charter in every workplace that when you encounter a disabled citizen you must do one thing to help them? There should be a rights-based approach. Should that be legally obligatory? In the absence of a culture that supports, scaffolds and empowers our disabled citizens, do we need that? Should we have a charter that is legally binding? Our culture does not have that good will. There are exceptions but you should not be relying on those exceptions. You come across the odd exceptional person who wants to help but everybody should be like that.

On disability allowance and carer’s allowance, when Ms Hughes was talking about the Indecon and Family Carers research, it struck me that it showed that additional expenses every year are about €12,000, and I know in some cases it is much greater than that. I did a quick calculation. The disability allowance comes to something like €11,500 a year. The disability allowance should be raised at least to the level of the Covid payment because that was calculated on the basis of a person living with dignity. It should be, at a minimum, increased to that. Would the witnesses agree that disability allowance should be a universal, global payment, irrespective of one’s employment status? Once a person has a disability passport, he or she should have a global, universal payment without any means-testing, and the same for the carer’s allowance.

In respect of unemployment levels among disabled citizens, is there a regional variation in that regard? Is a person better off if he or she lives in a city? Is there data available to tell us the best and worst parts of the Republic to be in for employment? I know there are good and parts of the Republic to be in with regard to services and supports, which are largely absent, but such as they are.

Given that the situation is so poor, should we have compulsory quotas to get the critical mass? Should there be compulsory quotas for employing disabled citizens? It would be a radical approach but in the absence of progress and us having the worst track record in that regard, should we introduce that?

Finally, I thank everyone for coming in. I thank Mr. Meere particularly. I cannot express how much respect I have for the journey he has undertaken. I know we are not supposed to use the word “inspiration” or anything like that but I wish him continued success and continued good health.

Professor Eilionóir Flynn

In response to Senator Clonan’s question on the need for a legal charter, we already have the employment equality legislation, which prohibits discrimination on the basis of disability. The challenge of that, of course, is that the individuals who experience the discrimination are the ones who have to bring a claim forward under that legislation. There are certainly grounds for thinking about a new way to understand equality legislation and different mechanisms by which people could pursue a claim rather than having to wait for individuals to identify what they have experienced as discrimination and have the courage, means and resources to go through a discrimination legal challenge, especially since this something for which a person does not have an entitlement to civil legal aid. Legal remedies can be useful but we need to carefully consider how we frame them. In addition, we need to make better use of the existing legal instruments in this respect.

One thing we could think about introducing in the employment context on a legal basis is something like the access to work legislation that exists in England, where an individual with a disability has an entitlement to support to enable him or her to stay in the workforce. Such people are entitled to that individually and carry that with them. For example, if they change jobs, become self-employed or want to pursue a different kind of career, they do not lose that eligibility and have to start all over again, proving their disability and the supports that they need. Something like an access to work to payment, which is controlled by and belongs to the individual and where the money follows him or her through his or her employment career would be beneficial to think about putting on a legal footing in the Irish context. Those are some recommendations we could pursue.

Ms Zoe Hughes

I thank the Senator for his questions. On the first point on needing to repeatedly prove that a disability exists or whatever it might be, the same applies to reviews of means-testing for carer’s allowance, which is what I am familiar with. It is a source of incredible stress for family carers who are in receipt of the allowance. Only very recently, we heard a couple of reports of family carers who received a letter that was dated probably a week before it was sent out by the Department, which meant that carers themselves only had about four days to get all of the documentation together for their review before it was cut off. If you ring thing the Department and the system, they will say that it is fine and they just need it back in the next ten days or whatever it might be. However, family carers often just do not have the time to chase bank statements, proofs of disability for the person they care for and proofs of need. It is an incredibly stressful time and caring is stressful enough as it is.

On whether disability or carer’s allowance could be a global, universal payment that a person keeps regardless of entry into the workforce, I would like to go back to a point I was going to make in response to Deputy Tully around what the social protection system is for and what it is designed to do. It is a good opportunity to see how we view individuals within society. Are they tiny economic units of production or are they members of a community who are working together to create a community and a good place live and grow in Ireland? That is probably bringing my own viewpoint into it, as opposed to my organisational viewpoint. It is important that family carers contribute a huge amount to society but are often not viewed as that. If they do not get payments or do not see that, they are kind of in limbo in some ways. Are they working or not? They are not working but not getting a payment. It is not necessarily recognised terribly well in those grey areas, which is why the idea of something such as universal basic income or a participation income is a helpful tool to think about when we think about these issues. The carer’s support grant, in some ways, is a payment that is available to family carers regardless of their work status. It is not a means-tested payment; a person providing full-time care can be in receipt of that. That is a once-off payment in June of €1,800 at the moment, I believe.

It comes back to how individuals with disabilities and family carers are viewed. Do we have to compel people to work or can we perceive what they are contributing in other ways to be just as valuable as being part of a paid workforce? That is not to say that being part of a paid workforce does not have massive benefits socially, mentally and economically – of course it does.

I do not know if I answered the Senator’s question, but those are some of the thoughts I wrote down when he was speaking.

Mr. Adrian Stewart

I wish to come back to the Senator’s question on the quota scheme for people with disabilities. Whether we should or should not introduce it in Ireland has been knocked around in discussions over the past 20 years. It is a reality in many countries in Europe. It is a reality in Ireland in the public sector, where we have a 3% quota that will go up to 6% in 2025. It has had some, albeit limited, success.

I was at the launch of a document last week. It was nearly embarrassing to be at it from Ireland because we ranked lowest in the percentage of people unemployed and highest in having the largest gap between employment of people with or without disabilities. We need to have a discussion around the quota scheme and we definitely need to include and involve people with disabilities in that discussion. It is not something that we should look at on a long-term basis but it is certainly something that will take us out of where we are now.

On the other side, we need look at incentivising people with disabilities, and not putting obstacles in the way, so that they go into employment. However, there is much work to be done on the demand side and bringing employers on board. A quota scheme would focus the mind.

Mr. Michael Meere

I have a few things to say. First, on the disability passport, I can empathise with and relate to the Senator’s son’s experience on this. I have got letters from my consultant, printed them off and put them in the front pocket of my bag to solve the following kind of problem.

I went to the train station in Limerick one day. I needed to use the toilet because I have urinary urgency. I asked the security guard if I could use the toilet. He looked me up and down and said "No". I asked why I could not use the toilet and he said it was because I do not have a disability. I had to take out my letters from the consultant and show them to him. He questioned me on their validity. He did let me use the toilet and when I was in there, I felt the door handle rattle. I came back out and was walking away and whatever is inside me from having a disability, my mind would not let me walk away. I went back to him and very politely and respectfully told him that while I appreciated what he was doing, he had to take into account that you cannot always see a disability. I told him that just because I did not have a wheelchair with me or just because I did not have my crutch with me on the day did not mean that I did not have a disability. When I explained it to him in a respectful way, he actually fully understood, which leads me to my next point.

It is about bringing about public awareness. I find most people, once they are made aware that I have or somebody has a disability, they will accommodate it. They will facilitate it and they will even go over and beyond. If they are not aware, they think you are up to something wrong or are trying to cod them or whatever. Bringing about public awareness is very important. We also need to look at the Scottish healthcare model where they state it is societal barriers that make people disabled, not their disability or their illness. It is the barriers that are placed on them without people even being aware of it. People are placing barriers in front of people with disabilities. They are not doing it intentionally; they are just not aware so they cannot accommodate disabilities when they are not aware of them.

My third point was around the legal framework that was mentioned. When one is hiring a person with a disability, a simple thing like an ergonomics assessment in the workplace should be mandatory across the board. It should not even be questioned. Once someone is hiring someone with a disability, the employer should be made aware also and brought in and empowered in this. There should be liaison between the Department with responsibility for social welfare, the employer, and of course the person with the disability.

Finally, Senator Clonan spoke about quotas, which we discussed this previously. I have various friends who have disabilities but they work in the Department of Social Protection and in Revenue. They tell me they have friends working there who also have disabilities, which I am delighted to hear and am really grateful for. I know the percentage is quite small and we are building on that. I am no expert on this but in the private sector, perhaps there should be something like a social clause whereby each private company has to hire a certain percentage of people with disabilities. People with disabilities really want to work and in my own experience, they go over and beyond their capacity when they do attain a job because they are trying to prove to everyone that they are as good as everyone else. If a clause was put in across the board that everyone had to have a percentage, it would be really beneficial to be honest.

Ms Lucianne Bird

I will be quick as the committee wishes to move on. Yes, there are geographical disparities. I do not have statistics close to hand but we are aware that, for instance, travel costs for somebody with a disability in a rural area are probably higher and more difficult to access than perhaps in an urban area. The more rural one is, the more disadvantaged one is in many respects, such as waiting times for services and availability of services. We deal with that a lot and because we are spread across every pocket of every county, we see people in the more rural areas are probably the most disadvantaged in many ways. There is no additional funding to pay for the €40 taxi fare every day needed to get to the bus to take someone to the service, those kinds of things. There are endless examples of that. I do not have statistics but anecdotally, we know there is geographical disparity. There are obviously huge pockets of deprivation in urban areas that also experience disparity of provision.

Mr. Adrian Stewart

To add to that, the unemployment rate is something we are not particularly good at measuring. If someone is on a disability allowance, he or she is not on the unemployment register and consequently does not even register as being unemployed.

Senator Tom Clonan

That is extraordinary.

Mr. Adrian Stewart

If something is not measured, it is very difficult to take action on it. That is problematic as well. When we do measure it; it is through the census. That is when we get an in-depth look at it.

Senator Tom Clonan

I thank the witnesses.

Deputy Frankie Feighan

I thank the witnesses and they are very welcome. I apologise, as I had to leave to do an interview. I was following the meeting on the screen upstairs but as I probably have missed one or two things, if I repeat some of the questions please forgive me. I am delighted to see Mr. Meere and he said he had some journey and I really admire anyone who goes back to university. In the job here, we have an interview every four or five years with 50,000 people and I often wonder if I could go back to third level education, so well done. Mr. Meere retrained and upskilled and the supports he was given were helpful but the fact he has to retain 75% of the original payment and will be reassessed after three years does not give any certainty and there needs to be a better system in place. As Mr. Meere said, it is discouraging.

On the disability passport, my colleague outlined it quite clearly. Is there something we can do to ensure that? There was talk about the Scottish healthcare model and I suggest to the Chair that perhaps we could bring them in to talk about that, because it seems to be the way forward? Perhaps there are aspects of that Scottish model we could look at.

I am delighted to see Ms Bird and the Rehab Group appear before us. We had the Rehab Group in many years ago and they were very badly treated. I have said it before that this committee is very measured and open and as everyone deserves due process, it is great to see. I want to speak about the great work the Rehab Group does with 10,000 people, championing diversity for people with disabilities all across Ireland. I am very aware of the Rehab Group's National Learning Network and note that each year, there are 7,000 students from 16 years of age to 65 years of age. I see it myself when I visit Atlantic Technological University, ATU, in Sligo and it is wonderful to think we have made such progress in the last number of decades. We can do more but it is wonderful to think of.

One thing I noticed when I was at the Department of Health about section 39 agencies or organisations like the Rehab Group is that Departments love good governance and good data. Once organisations have those relationships with principal officers, and I am sure the Rehab Group has those relationships, they put the question forward for more money and budgets and so on Again, it is great to have the Rehab Group because as I try to tell people, the State or Government cannot do everything and does not do everything. It needs people like the Rehab Group to provide the services and we have to provide the supports and funding for that.

Regarding the traditional workforce model, could the witnesses elaborate a bit more on that?

This will provide for places and supporting services. I thank the witnesses for advocating on behalf of all their service users.

The approach to eligibility thresholds and benefit levels that include the introduction of a disability passport have been mentioned. I am not certain what is meant by this. Perhaps the witnesses will elaborate on this. The system probably needs a lot of overhaul. It needs to ensure that it engages with service users. I thought this was happening already. Perhaps the committee can push-start it or give the impetus it needs. The Chair and the committee are very aware of the difficulties with simple things. The Chair is certainly pushing to make sure there is a voice not only in government but in all sectors of society. I thank the witnesses for coming before the committee and giving us valuable reassurance and information on what we can do.

Ms Lucianne Bird

I thank the Deputy for his kind comments. Throughout every episode in our history we have always stayed focused on the end user. We have always set out to ensure quality-assured services that at their heart seek to include people in their community, employment, work and whatever the person chooses. We are always focused on the end user of our services. We work our way through other things that happen.

The Deputy's comments on funding are welcome. There is always a gap between the cost of service provision and the funding available. We work with various Departments, particularly the Department of Health which, in fairness, has provided some funding towards the inflationary costs for 2022. It is one-off funding and the cost of inflation has not gone away. This needs to be discussed.

I want to highlight that the National Learning Network has not had a funding increase since 2011. We are paid on a utilisation basis and a capitation per student attending. We have not had an increase since 2011. We have been absorbing pay restoration and all the costs, including inflationary costs and cost-of-living increases, during this time. People are presenting with higher level of needs. The National Learning Network is financially struggling and we have raised this with SOLAS and the Department of Further and Higher Education, Research, Innovation and Science. We are seeking to address it. There is always a struggle for funding in every section 39 body and the Deputy's comments are welcome in this respect. It needs to be addressed. No more than the persons asking for the services, the providers should not have to beg constantly for adequate funding. I will leave this comment there.

Mr. Adrian Stewart

The Deputy asked for more information on the transitional workforce. We have long identified a gap whereby employers are keen to do something to employ people with disabilities but have fears and uncertainties about doing so. They have their own fears and concerns, as well as concerns for their workforce. We looked at this and saw a gap where employers needed to have face-to-face experience of working alongside people with disabilities in a low-risk environment. We have developed a transitional workforce model. We have done proof of concept and it works. We have marketed it to employers and there seems to be a great appetite for it. The way it will work is that somebody with a disability will be employed initially by Rehab but will physically work with an employer as if he or she had a job there. After a period, the person would move on and take up employment with that particular employer. We are delighted with the feedback from companies. They state that in a time of labour shortages and great difficulties in trying to find staff, this is an opportunity for them to do something that makes their workforce more diverse and inclusive.

Senator Erin McGreehan

I apologise as I had to go to the Seanad and missed the previous question-and-answer session. Every week we are very clear here that the entire system needs a dramatic shake-up and great change. We are stuck in the medical model of benefit and allowance and people always having to convince someone that they need something. It is deplorable. We hear it week in, week out and we constantly push for change. It is clear to me that benefits and allowances should be changed to a social activation fund or an economic activation fund. Each individual is an entity in him or herself and has an ability to spend money and make money. Such a fund would allow this to happen. The committee is very clear that the restrictive nature of the benefit allowance, and how it is made and set up, puts people at a disadvantage constantly. It is a State-sanctioned poverty cycle. People are damned if they do and damned if they do not so they stay at the status quo.

Many of my questions have been covered. The personal toll on Mr. Meere must be great. Unfortunately this is not unusual. I hear it constantly. People are prohibited from doing the best they can do or from doing what they want to do. We do not all have to do our best, we just all have to do what we want to do. We are here because of the person, as opposed to the big institutions.

How does the current set-up restrict Rehab in providing a leg-up and support to get people into gainful employment or proper employment? How does Rehab see the move towards individualised budgets? How would this support people? People could choose to do something with their own authority and in their own way. They could push from there.

Professor Eilionóir Flynn

These very important questions on how we can reimagine the system. While social activation or economic activation could be useful ways to reframe it there is a risk of just renaming existing practices without changing the underlying processes unless we are committed to a broader imagining. Deputy Tully spoke earlier about going back to the roots of what social protection is for. It is to enable people to live a life of dignity regardless of what their employment status might be and to recognise a broad range of contributions that people can make that might not be in the form of paid employment.

They could have caring responsibilities or might be volunteering in their local communities. They might be a great friend and supporter to people in their networks, and we need to understand and value that as well. People need to live a life of dignity, regardless of what their economic or potential economic contribution might be. We all acknowledge that economic contribution is not a good way to measure human life and human endeavour. I encourage everyone to think more deeply about the purpose of social protection and to ask if we can get away from measuring people in terms of their potential economic contribution, while at the same time acknowledging that many people are unemployed as a result of disability-based discrimination and that we need to address the root causes of that as well. That would be my suggestion on that front.

Mr. Michael Meere

In answer to the question, it does have a dramatic effect. I would experience a lot of psycho-social, emotional and psychological issues which lead on to physiological problems. It is a vicious cycle because one experiences things psychologically and then it starts to interfere with parts of one's body, often parts of one's body that are already experiencing the effects of an accident or trauma. It has a major effect. I find that my depression fluctuates with it, to be honest, and I find myself going to the doctor to increase or decrease medication as needs be. It is these external forces that are at play; it is not me, in my mind, saying that I want to feel upset today. It is actually external forces that can make me feel upset, ostracised or segregated.

There are lots of systematic studies out there which prove that psychological issues lead to physiological effects and some kind of intervention, in some shape or form, is needed. Basically, what is required is a plan. Reference was made earlier to the Scottish healthcare model and it was suggested that this committee may need to invite representatives from Scotland to appear before it. In Scotland, there are disabled people on the committees that formulate policy. That is why they have such an integrated system.

Mr. Adrian Stewart

Senator McGreehan asked what the State could do to support us and I would like to talk about employment in particular. As Ms Bird mentioned earlier, we have Rehab Enterprises, which is a social enterprise for people with disabilities. Obviously, there is a role for the State to play in terms of tendering. There is a process within the EU that is governed by Article 20. Under this, procurement agencies can procure from organisations where 30% of the people involved either have a disability or are disadvantaged. This has not really been used at all in Ireland and it is something that we urge the Office of Government Procurement to engage with. The other issue with regard to contracts is the need for some sort of social contract under which suppliers to State agencies would employ or engage the services of people with disabilities. Senator McGreehan may have missed it, but we spoke earlier about a quota scheme for the private sector. The State should at least start a discussion on that. Maybe it is something that we could implement down the road.

In terms of employment, a supported-employment service is essential. While we do have a national supported-employment service, it is limited in terms of its reach for people with disabilities. I would like to see something put in place that would support people with more significant disabilities into employment.

Ms Lucianne Bird

In terms of the end user, across all of our services there is huge frustration that we are not able to provide exactly what people need or to provide the best because we do not have access to a funding pot. Access to more multidisciplinary team funding would make a huge difference to the quality of the service we can provide. We do not have access to adequate levels of funding. The other issue is flexibility in funding. We should be able to go to the funder if the needs of the people we are working with have changed and get agreement to move or shift funding in a different direction. I am thinking of things like transitional support services for people moving from school to further education or from education to employment. People have very different transitioning-support needs but there is very little funding available there. There is a lot of funding in the pot and there are many supports available, but the issue is how we, as a society and a country, use those to the best possible benefit of the end users. More flexibility is needed. Just because we are providing X, Y and Z now does not mean that is what we should be providing in three year's time. We need to work out what the needs are now, what they likely to be in the future and what types of services need to be developed to meet those needs. That needs to be a dynamic, ongoing and constant cycle. As providers, we are limited in what we can do in that regard. We do a great deal, but we could do a better job if there was more flexibility and we were able to make more proposals around the transitioning and funding of services. That would be important.

Mr. Stewart has covered the employment issue already so I will not go into that. In terms of personalised budgets, we have participated in the various pilot programmes and would be supportive of the principle. It is very important to give people ownership of their budgets and to give them the opportunity to make the choices that they want to make but it is necessary to have the infrastructure in place within which they can make those choices. Again, there is a transitioning piece there; it involves moving from one to the other. That needs to be carefully thought out because there is a danger that people will have a budget but no place from which to buy their service. That needs careful consideration and management but we would be very supportive of people having access to their own budgets. Hopefully, that answers the Senator's questions.

Senator Erin McGreehan

Hopefully, the Government will listen to us when we submit our report.

Deputy Dessie Ellis

I thank our guests for their contributions. I thank Michael in particular for sharing the lived experience he has had with us. He has shown us all of the obstacles that people with disabilities have to face and how he has overcome them, although, obviously, he still has more obstacles to overcome.

My experience is that I deal with a lot of issues related to carers. As everyone knows, the situation varies from area to area. I am based in CHO 9 and every so often we get quotas for care hours and so on and we find it very frustrating. We still do not have enough care hours and that really annoys me. Some families need three or four carers to deal with issues. I am sure our guests have experienced that. It is very challenging when people have several different disabilities, when they are visually impaired and have Alzheimer's disease, for example.

I ask our guests to outline how they think we could better use the personal assistance service. There are many families and individuals who need someone with them to assist. The most important consideration is the person with the disability. In terms of carers and personal assistants, it is not clear whether a personal assistant is present when a carer is visiting a person with a disability. What is our guests experience in this regard?

What happens when a person with a disability is not happy with the service he or she is getting? Communications can be a bit of a problem. Some people are non-verbal and are not able to communicate properly, while others may have visual impairments. I am interested to hear about our guests' experience in that regard.

People with disabilities, especially women, are more at risk of poverty.

Usually women are on the front line. There are exceptions, but usually they are the ones who have to pay the bills, heat the house and look after the home. They are acting as carers and, in many cases, they are penalised when they are means-tested. I am curious about the witnesses' thoughts on that.

For people who have disabilities, it is quite annoying and wrong that it must be certified that they are unable to work for them to even access contributory or non-contributory social protection schemes. That contravenes Article 27 of the UNCRPD. I am curious about the witnesses' thoughts on that.

They mentioned the possibility of the current welfare system being replaced by a universal basic income. Would that take into account all the different necessary extras? At present there are many extras, whether it is free travel or funding for taxis and so on. Are they talking about a system that would deliver a basic income? How will that be set? During the pandemic, the Government set it at €350 per week, which is way below what carers get. I am curious about how that would be measured.

Ms Zoe Hughes

I can comment on the carer piece. The Deputy mentioned the gender component of caring. The breakdown in the census is that approximately 60% of carers are women and 40% are men. However, when we dig into the levels, intensity and long hours of care, it tends to skew more towards women providing that level of care. They tend to be most impacted by issues around the means test and can often end up reliant on their partners for additional income. Then if there are difficulties in the relationship - which no one likes to talk about, but it happens - women who are acting as carers where a partner is involved can be left at a worrying disadvantage. I am not sure how to get past that. We appeared before the Joint Committee on Gender Equality a few months ago to discuss care issues. The referendum is coming up so I am sure the debates around that will come out in due course. It is a good opportunity to have a conversation about that as a society and about how gender and care intersectionality - that is my favourite buzz word - impacts on family carers.

I have not done a huge amount of nitty-gritty costings of universal basic income and participation income as it relates to family carers. I am sure everyone is familiar with Family Carers Ireland. The organisation is working on the matter at the moment so that might be the best place to go for that information. It has specific expertise on the issue.

I hope that answered the Deputy's questions.

Professor Eilionóir Flynn

I will add on the universal basic income that the research I mentioned by Simon Duffy and others in the UK advocated a model of what they call universal income plus, which recognises that disabled people and others would require a top-up to address the additional costs that relate to disability or additional supports people need as a result of a disability in addition to the standard universal basic income. That could work. It certainly could not be a one-size-fits-all approach. The additional costs non-disabled people do not face would need to be recognised. That would need to be factored into any universal basic income, as Mr. Abdalla also stated, to ensure it meets the obligations under the UNCRPD.

Ms Lucianne Bird

The Deputy asked about when people are not happy with a service. Generally, service providers working in the area have strong complaints procedures in place. We follow the HSE Your Voice Your Say complaint procedures. We are mandated to report complaints to the HSE about the part of our business it funds on an ongoing basis. Our approach is to have strong advocacy and supports in place for people we work with and provide services to. All our services have representative committees. Mr. Meere is an example. There is a strong advocacy voice across Rehab Group as a whole. Our approach is that we try to be the microphone but not the voice. We are the means by which someone such as Mr. Meere or others who use our services speak and tell us what they want, and we set out to be responsive. People are not always happy. They have the right to complain and should do so. We view complaints positively in the sense that they give us an opportunity for improvement and for doing things differently. We have a strong ethos in the organisation to resolve complaints and work with the people who use our services.

With respect to communication, all National Learning Network training builds in advocacy for every person who participates in the programme. Many people who use our service are not able to communicate openly, as the Deputy stated, or are not yet verbal. We have different tools. We use assistive technology and various means to ascertain whether something is a person's choice or preference. Assisted decision-making, which passed into law recently, puts huge emphasis on that. A lot of staff training and a programme of work is under way in Rehab Group to implement the Assisted Decision-Making (Capacity) (Amendment) Act. We will set out to review and improve and ensure that the voice, preference and wishes of the service user are paramount in everything we do. I hope that answers the Deputy's question.

Deputy Dessie Ellis

I am curious about personal assistants.

Ms Lucianne Bird

In National Learning Network we are kind of the end users. People who come to us have PAs. We do not provide the service. Our sister company, Rehab Care, provides home care and I think we employ personal assistants in one location. We also provide PAs in a few of the higher education organisations, but they are more academic personal assistants to enable people to access education. I highlighted the inadequacies in the system, including long waiting lists and the hours not being long enough. For many people, their PA is their voice, their arms and legs and their means of coming out of their house and being part of society in so many ways. It is a vital service. As I said, there are many inadequacies in the system currently. When we are providing educational training, we can use one PA effectively to perhaps meet the needs of more than one person with a disability. Synergies can be achieved in the use of resources. We are constantly trying to use resources well on behalf of the State. We do not necessarily want a classroom where every person has a PA. We look at the needs in that classroom and how they can best be met through the use of a personal assistant system as opposed to individual PAs. There are different ways of maximising the available resources.

An Cathaoirleach

There are the disability allowance, the invalidity pension and all the various schemes. How should we devise a new scheme or how do we underpin a scheme that will allow people to work, have their benefit and hold on to their secondary payments? A few people have mentioned the rural social scheme to me, which was devised approximately 20 years ago for low-income farmers and fishermen.

Under the terms of the statutory instrument under which it was set up, there was a large disregard for various incomes through environmental schemes and so forth. Recently, I completed a course on social farming in UCC, where we debated this matter at various points along the way. The witnesses mentioned labour activation and other employment matters, but there seems to be a great need for some underpinning of the secondary benefits to encourage more people with disabilities into therapeutic work, for want of a better phrase, or into employment. Have the witnesses given any thought to such a scheme? Someone on the rural social scheme can, for example, receive the half-rate carer's allowance and the scheme has a number of income disregards. Could the witnesses examine this matter and report back to us? From the evidence and experiences we are hearing, we are trying to determine whether something similar could work. Has Rehab or any of the other groups examined the models employed by Social Farming Ireland and Kerry Social Farming or engaged with those organisations in any way?

We will go around the houses and given everyone a chance to wrap up. We will start with Ms Hughes before moving on to our two online guests and finally the others, if that is okay.

Ms Zoe Hughes

I will consider that. We have no contact with Social Farming Ireland or the like as regards caring. However, there are many carers in that space in rural Ireland, so I will look into it and see if there is anything on which I can report back to the committee.

A number of issues arise for family carers who wish to re-enter the workforce or enter it for the first time and work while also caring. Sometimes, caring is seen as all they can do, but carers often want to work or volunteer at the same time. If they are in receipt of carer's allowance in particular, though, they can be stymied in doing so. They can only work 18.5 hours without their eligibility for the allowance being affected. Education is also affected. For example, if someone is retraining, it is not just all of his or her contact hours in college that are considered, but assignments and travel to and from college as well. This can be disincentivising. It is also insulting to think that family carers, who balance so many things, do not know how best to balance their education or work with ensuring that the persons they care for, love and want to ensure are safe, happy and healthy are cared for while they are at work or training.

Care Alliance Ireland runs online courses with family carers to enable them to return to the workforce, particularly where they know their caring roles are coming to an end and they are planning for that. Confidence is one of the greatest barriers people face – when they have been out of work for so long, their confidence can take a knock. It is too simplistic to say that if we allow people to train or go back to work while keeping their benefits, they will return to work. More needs to be done to achieve that, and perhaps there needs to be awareness of that. This is the only matter I did not get to cover earlier.

I thank the committee for the opportunity to contribute.

Professor Eilionóir Flynn

A number of steps could be taken quickly if there was the political will to do so, for example, further progress on income disregards and ways of decoupling secondary benefits from other social protection payments so that, if people have a medical need for a medical card, that card is provided regardless of their income levels. We have acknowledged that there is a major disincentive for people to consider other opportunities if their medical cards are potentially in the balance.

We have shown that decoupling is already a possibility for certain groups. That number could be expanded considerably, which would have a significant short-term benefit on people's daily lives by addressing some of the cost-of-living challenges we have discussed.

More work needs to be done on a universal basic income, and additional costs of disability will need to be factored in. For a long time, there have been research and policy recommendations on introducing a cost-of-disability payment. It is a question of having the political will to achieve that. We do not need to look far to find examples of good practice. We could learn from the lessons of comparative jurisdictions by reducing the bureaucratic complexity of systems of entitlement that people have to navigate so that they can easily access flexible supports that are necessary for them to have lives of dignity.

Ms Lucianne Bird

Professor Flynn has covered many of the issues around a future system and we concur with everything she said. Moving away from the medical model of incapacity to work would be important. The coupling of secondary benefits presents people with a significant barrier. Covering the cost of disability has to be treated as a universal payment or, if people are working, as a tax offset. Regarding durations, someone's disability does not disappear just because he or she has worked for three years, as Mr. Meere said. Looking at the matter in this way is important. Attendance on the first steps should not be incentivised. We should not make it prohibitive for people to attend training or development courses. To build on Ms Hughes's point, our training is more than just the course. It is about building back the person. It is an holistic approach. It is not training in the vein of a mainstream or FET programme. Rather, it is training plus, and the "plus" is very much concerned with the person and what he or she needs in order to be confident, ready and resilient enough to go into the workplace or enter his or her community. This is an important consideration.

We have some experience of social farming and have done some development work on training schemes that would be more appropriate to rural areas. We run very well-subscribed and powerful horticultural programmes in our centres, including our rural centres. There is a fabulous such programme in Park House in Dublin. People find the combination of the programmes' therapeutic effects, the fresh air, working on practical things, learning skills and being able to translate those into their own lives powerfully. This is an area for further exploration and development, particularly in rural communities, and we would be happy to look into that. We are also happy to take away the Cathaoirleach's request to consider what changes could be made to the system. We will revert with succinct proposals in that regard.

Mr. Alradi Abdalla

This has been a great discussion. I wish to reiterate the importance of consulting persons with disabilities through their representative organisations when designing forms so that they can be better positioned to benefit from disability programmes. This is necessary.

We need to move beyond cash transfers and have concession and service provision as a part of social protection. From a political view, it can sometimes be challenging to pass laws or regulations to have a large amount of cash transfers. In that case, it could be good to have some concessions, discounts or reliefs or services provided directly, for example, assistive devices and rehabilitation services, or consider those services as a part of universal health coverage. This could be a path towards a more comprehensive social protection coverage for people with disabilities.

We need to consider the new track approach of having specific disability schemes and increasing the level of accessibility in social protection schemes. People with disabilities could benefit greatly in this regard.

Following the UN Convention on the Rights of Persons with Disabilities recommendations with regard to disability assessment and looking at the experience of other countries would be my key recommendation. Thank you.

An Cathaoirleach

We will hear Mr. Stewart followed by Mr. Meere.

Mr. Adrian Stewart

We have had a good discussion today about social protection. One thing we need to look at is the crossover between social protection and employment. We need to try to improve the employment prospects of people with disabilities, and move them away so they become as independent as they want to be. There is huge scope with the current schemes. They need to be more individualised. As Ms Bird stated, the incapacity-to-work medical model is definitely broken. We need to provide encouragement. We spoke today about the quota scheme, and different things the State can apply to improve the lot of people with disabilities. There is a lot of work to be done and we have identified a lot of the issues today.

Mr. Michael Meere

From what I have heard,we are still a bit in the dark ages when it comes to disability and employment. That is not good. We need to create awareness and empathy, not sympathy. We lived in a period when people felt sympathy. Of course one should feel sympathy for a person with a disability. However, it is more important to empathise with them and stand in their shoes to know what it is like. That would be huge in terms of bringing about change. More than that, we need implementation of the various strands mentioned today. There were lots of important strands mentioned, which would be very beneficial. More so than speaking about them, implementation is needed. Time is of the essence. We advocate for people with disabilities. I have a disability. We have NLN, which facilitates, empowers, encourages and guides us to the reach our destination. The interventions are there for any help we need on that journey. If we could have more interventions like that it would be a huge help when it comes to living with a disability and affording a disability. Multi-agency and multidisciplinary approaches have been mentioned. They are great in theory and the words are great, but if we had them that would be a huge help to us. I thank everyone for taking the time and for their patience listening to me today. I really appreciate it.

An Cathaoirleach

The thanks is on our side because we appreciate the commitment of the witnesses, and the evidence they have given. By their evidence, the committee is strengthened in trying to do its work to improve the lives of people with disabilities, their families and their communities. I thank them sincerely. If there is any further information the witnesses think we should be made aware of, they should send it to us and we will try to put it to good use. We are currently in the process of putting forward the committee's prebudget submission. Any thoughts they have on that would be much welcomed.

I also thank our members for their attendance, and their commitment to our work. I thank the team here, which does excellent work at all times in preparing things. It does great work, and that is appreciated.

The joint committee adjourned at 11.44 a.m until 3.15 p.m. on Wednesday, 17 May 2023.