Joint Committee on Gender Equality debate -
Thursday, 23 Jun 2022

Recommendations of the Report of the Citizens’ Assembly on Gender Equality: Discussion (Resumed)

Chairman

We have received apologies from Deputies Cannon, Carroll MacNeill and Smith and Senator Warfield. Other colleagues will join us remotely and some are coming in a little later.

Today we are continuing our meetings on the recommendations Nos. 4 to 19, inclusive, of the Citizens' Assembly on Gender Equality, which relate to care and social protection. We have representatives from the Disability Federation of Ireland, Disabled Women Ireland, and the Independent Living Movement Ireland.

I welcome our witnesses this morning. Ms Fleachta Phelan, senior policy advocate with the Disability Federation of Ireland is joining us here in person. She is very welcome. Joining us remotely are Ms Amy Hassett and Ms Maria Ní Fhlatharta, co-directors with Disabled Women Ireland. They are both very welcome. Ms Fiona Weldon and Ms Eileen Daly from Independent Living Movement Ireland are very welcome and join us remotely. Ms Weldon is the strategies for change co-ordinator and Ms Daly is a CREATE life coach. We are very accustomed now to having these hybrid meetings, which is great because it really maximises participation.

Our committee is charged with overseeing the implementation of the 45 recommendations of the Citizens' Assembly on Gender Equality, which we regard as a blueprint for achieving gender equality in Ireland. Our focus is very much on how to implement those recommendations. We will produce an action plan at the end of our term in December. We want to focus, therefore, on the practical implementation of the recommendations. We are conscious that many of today's witnesses, and our witnesses generally, have already participated in the citizens' assembly process. We do not want to duplicate that work. We want to build on the great work the citizens' assembly has done.

Witnesses are protected by absolute privilege in respect of the evidence they are to give to the committee. If, however, they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make them identifiable. Participants who are to give evidence from a location outside the parliamentary precincts are asked to note that the constitutional protections afforded to those who are participating from within the parliamentary precincts do not extend to them. No clear guidance can be given on whether, or the extent to which, the participation is covered by absolute privilege of a statutory nature.

I welcome all of our witnesses and thank them for being here to engage with us. We ask for a time limit of five minutes each on the opening statements. I thank the participants for providing the committee with some very detailed opening statements.

I call Ms Fleachta Phelan to make her opening statement on behalf of the Disability Federation of Ireland.

Ms Fleachta Phelan

Many thanks to the committee for inviting us to speak. The Disability Federation of Ireland, DFI, was delighted to contribute to the citizens' assembly deliberations last year and welcomed the thoughtful and strong recommendations that came through from the committee, which reflected many of the concerns that disability organisations, including all of us here, have been raising for many years.

While the focus of the assembly was on gender equality, and we know disabled women often face discrimination on multiple fronts, it is notable that many of the recommendations we are discussing today would actually benefit all people with disabilities. They would also help Ireland to meet its obligations under the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

It is important to note at the start that we could have a full session on any one of the recommendations we are discussing today, but nevertheless I am sure we will all do our best to give some thoughts to the committee for its own reflections.

As my opener, I want to pose a question to the committee. The most recently published 2021 Central Statistics Office survey on income and living conditions, SILC, poverty data shows that disabled people are now five times more likely to live in consistent poverty than the general population. The data shows that 19.2% of those unable to work due to long-standing conditions such as disability or health issues live in consistent poverty, while the national average is 4%. Also, the at risk of poverty rate for this cohort for 2021 was 39.1%. This rate increased by almost 6% last year, while the national average at risk of poverty rate declined to 11.6%. These statistics are very stark.

My question, for this committee, and for our country, is whether we believe it is acceptable that people in Ireland, by virtue of being disabled, should be locked into poverty, a significantly lower standard of living, and the extreme stress that goes with trying to live on an insufficient weekly amount. It was very heartening for many of us that the citizens who deliberated on this did not believe this should be the case and gave parliamentarians like the committee members a very strong mandate to take action to change this deeply unfair situation.

We have seen recently how powerful our social protection system can be in protecting our society from poverty. The pandemic unemployment payment was set at a much more adequate rate of €350 a week, and the 2021 poverty data show how effective that policy choice was, with the general at risk of poverty rate declining, even with the substantial amount of economic upheaval caused by the pandemic.

Disabled people have found this very difficult to watch because they continue to be expected to live for the rest of their lives on a much lower disability allowance rate. At that stage, it was €203 a week, now increased to €208. Two in five people who rely on this payment to live are at risk of poverty. This shows that our current social protection provision is completely inadequate. We know that last year's Indecon report on the cost of disability documented what many of us here have been highlighting for a very long time. It concluded that people with disabilities have annual extra costs ranging from €8,700 to €12,300, although that can reach up to €23,610 or more for those with multiple disabilities. The basic annual income provided by disability allowance is €10,816. It can be seen that those sums do not add up.

DFI is increasingly receiving alarming emails and phone calls from disabled individuals who are struggling to make ends meet due to the cost-of-living crisis. Even though the Government had the cost of disability report in hand for budget 2022, disability allowance was only increased by €5, the same as every other payment. This was an increase of 2.5%. As we know, inflation is now running at 7%.

I want to quote from one of the emails we received recently because it illustrates the problem with painful eloquence. Permission has been sought from the author to quote this email. It is a fairly long extract.

[Disability allowance] does not even cover essential outgoings, even when stripped back to the lowest amounts possible. I use as little fuel as possible, yet cannot pay my bills without going without food for days on end. The fuel allowance has been cut off since the second week of April, even though it is still cold at night. It seems inhuman that our government treats the most vulnerable in society this way. Such extreme poverty amounts to social exclusion, a large 'no entry' sign on every ordinary pleasure. A €5 cup of coffee with a friend is an unaffordable expense on an already overdrawn account. Regular and unexpected household costs set me back for months, particularly if I cannot repair things myself, like broken blinds, boiler or washing machine repairs. People need to have money in their pockets in order to get out of their homes and mix with the real world. Social isolation is not an acceptable solution to the misery of having no money to join the rest of humanity in ordinary, even inexpensive, pursuits. Even with the living alone allowance, fuel allowance and household benefit, I am constantly overdrawn due to the necessity to eat and keep warm, yet stay connected with friends, on such a miserable sum.

Acting on recommendation 14 to set social protection rates above the poverty line is thus extremely urgent for disabled people. It is also important to remember that the members of the citizens' assembly indicated they were willing to pay to support increased social welfare provision and a more equal Ireland. Some 95.6% of citizens indicated that, if necessary, they were also prepared to support and pay higher taxes based on the principle of ability to pay and to make the recommendations a reality.

I have concentrated mostly on the social protection recommendation as the committee has already heard a number of inputs on care and, as I believe, Independent Living Movement Ireland, ILMI, and Disabled Women Ireland, DWI, are likely to make strong and important contributions on this. However, I will add a couple of short lines on care before I conclude. People with disabilities are often forced to rely on others, including family members, for care and support. Many family carers step into the caring role because there are no, or completely insufficient, State supports available for their family member. If the State provided and properly resourced independent living options, this could remove the necessity for family carers to compensate for and mitigate a lack of state provision.

As a result, DFI considers recommendation 10 to be extremely important. It addresses one of the most important rights for people with disabilities, namely, the right to live independently. We and our members have been calling on the State to support and resource this right for decades. We were pleased that this right was so strongly supported by the citizens' assembly, with a unanimous vote to support it. Ensuring a person is resourced to live independently includes providing a whole range of services a person may require and that includes personal assistant support, assistive technology, accessible public housing and transport, and an income above the poverty line, all of which we have called for over many years. We have also long-supported the creation of a statutory right to home care and we are an active member of the Home Care Coalition, a group of civil society organisations advocating for this right.

I thank the committee members for listening and I look forward to the discussion.

Chairman

I thank Ms Phelan. I call on Ms Maria Ní Fhlatharta to make her opening statement on behalf of Disabled Women Ireland.

Ms Maria Ní Fhlatharta

I thank the Chair. Ms Hassett and I will be splitting the opening statement but I will start. Disabled Women Ireland is the national disabled person’s organisation, DPO, representing self-identified disabled women, girls, non-binary and gender non-conforming people in Ireland. Our members self-identify as disabled and we understand disability as a broad concept which includes physical, sensory, mental and intellectual impairments. DWI is an all-island organisation, with members located across 25 counties, living in both urban and rural areas. We welcome the opportunity to present today on the recommendations of the Citizens’ Assembly on Gender Equality.

We broadly support the recommendations of the citizens' assembly and seek to ensure that actions based on them are constructed in such a way as to not further disadvantage disabled women and to uphold the rights recognised in the UN Convention on the Rights of Persons with Disabilities, UNCRPD, which Ireland ratified a few years ago. While we use the word "women" throughout our opening statement and will do so during questions later, this is only because data on gendered experiences of disability is lacking and we do not have figures on the experiences of other gender minority groupings, but we strongly support the citizens' assembly’s statement in its open letter that trans and non-binary people suffer from particular facets of inequality. At a time when trans people’s rights are facing unprecedented pushback on this island, we want to reiterate that non-binary identities are valid, trans women are women, trans rights are human rights and any deviation from that position fails to acknowledge or understand our equal dignity as humans. Disabled Women Ireland is nothing without our trans members. We should not have to say this, but the current climate is such that we can not speak on a feminist, equal future for Ireland without doing so. In our experience, any issue which disproportionately impacts on disabled women also impacts on disabled gender minority people to at least the same degree, but often to a greater degree.

First, we will speak on care recommendations 4 to 12. Overall, we support the recommendations made by the citizens' assembly in relation to care but wish to highlight a number of points essential to their being implemented in a manner which recognises the significant proportion of disabled people who are carers and which ensures the rights and agency of all disabled people are respected. We agree with the citizens' assembly's statement that we need to transform our models of care to ensure that our society values every person, but caution that specific measures must be identified and incorporated into any implementation which respect disabled people’s autonomy and ensures they can access any supports needed to exercise that autonomy.

In Ireland, 67% of disabled women are parents and disabled people are almost three times more likely to be carers than non-disabled people. In fact, 45% of family carers in Ireland are themselves disabled. Disabled people, and in particular disabled women, are responsible for a huge portion of caring work in Ireland. We need to acknowledge this and ensure they are better supported in this vital work. It is also important to acknowledge and respect the interdependence of care. Care is rarely a one-way street, and the systems we create need to reflect this.

When non-disabled people speak about care, it can often be in a paternalistic way that fails to consider that they themselves receive care support from those around them or in a way that fails to recognise that disabled people are often givers, and not only recipients, of care. For those of us who have relied on care, or have provided care, we know that these depictions of a one-way model of care are inaccurate at best.

We support the citizens' assembly’s recommendation that respite provision for carers should be improved but it is essential that we do not frame disabled people as burdens, a framing that plays a significant role in our dehumanisation. Indeed, disabled people themselves may also need a break from their families or careers, as we all do, and should be afforded the opportunity to have alternative experiences, build their own social networks and spend time away from their home environments. We want to be really clear that we do not want to see an increase in respite provision which results in disabled people being placed in institutions, but instead the expansion of such services in ways that include alternatives for those who want them.

We need to be creative and flexible in creating models that work for people on an individual basis, and some alternatives to institutional respite have already been used in Ireland. Examples of this are family home-sharing or respite budgets being provided directly to families have, in the past, enabled disabled people and their families to create systems which work for them. Better provision of in-home supports will make flexible, individualised alternatives much more possible and allow more freedom of choice.

We also do not fully support the language of recommendation 10, which focuses on choice of care and support, rather than fully acknowledging disabled people's right to choose their care or support arrangements, with the will and preferences of an individual at the centre of all such arrangements. The language used in this recommendation undermines the idea of equality for disabled people.

To say that disabled people should be able to participate as fully as possible in decisions about their own lives reflects neither the spirit nor the letter of the UNCRPD - specifically Articles 12 and 19 which we focus on particularly. Article 12 requires that disabled people enjoy legal capacity on the same basis as others and that they can access the support they need in exercising this legal capacity. This means disabled people are entitled to make all decisions about their own lives, and should be provided with any support needed to make these decisions. Article 19 states that disabled people are entitled to choose their place of residence, and as such, should have access to a range of support services of their choosing so as to enable them to live independently and be included in their communities on an equal basis with others. As the Committee on the Rights of Persons with Disabilities describes in the general comment on independent living in Article 19 " living independently means that individuals with disabilities are provided with all necessary means enabling them to exercise choice and control over their lives and make all decisions concerning their lives. Personal autonomy and self-determination is fundamental to independent living ...".

We are clear that support or care without choice is neither support nor care. Support cannot be imposed upon a person. We are clear that institutionalisation can happen in the home or in the community when the autonomy, will, and preference of a person is not respected. We agree that all-----

Chairman

Apologies Maria, but I am just conscious of time. Ms Amy Hassett is also speaking so I want to make sure that everyone gets a fair share of time. I am sorry to interrupt you; please proceed but we have the written statement with the full text of the articles and so on. Thank you.

Ms Maria Ní Fhlatharta

Ms Hassett can proceed onto the provision around care and we can address some of those in our answers.

Chairman

Thank you. I did not want to interrupt but you have a long opening statement and I wanted to make sure that everyone gets a fair share.

I call Ms Hassett.

Ms Amy Hassett

I will continue on the issue of social protection. As Ms Phelan talked a lot about, for disabled people, particularly for disabled gender minority people, poverty is a major barrier to realising an independent and adequate standard of living. The costs of disability can be significant, and insufficient support is available to meet them while avenues to employment are restricted or closed off to disabled people. As a result, disabled and gender minority people living in Ireland are exposed to high levels of deprivation and social exclusion, as Ms Phelan spoke about. Indecon published a report last year which stated that the cost of disability can be up to €11,734 and this cost rises with the number of impairments or conditions an individual experiences. This indicates that the disability-related social welfare payments available are wholly insufficient to allow disabled people and their families to reach even a minimum standard of living. It is for these reasons that we have broadly supported the assembly's recommendations on social protection. We believe it is absolutely essential we adopt a fully individualised social protection system and that social protection payments and supports should be set at a level that lifts disabled people above the poverty line, prevents deprivation and supports an adequate standard of living. We also support the assembly’s recommendation on pensions and a universal basic income. We are disappointed the recommendations do not include a specific reference to the cost of disability or a reflection on how means testing of disability supports places recipients in a dependent position within families.

We also want to highlight the interaction between financial independence and gender-based violence for disabled women and gender minorities. As stated by the assembly in its open

letter, there is no place in our society for gender-based violence. According to an Irish report, disabled women are, on average, three times more likely to be subjected to intimate violence compared with non-disabled women. While there are many different reasons for this, as highlighted by our members' consultations and backed up by international research, disabled women's lack of financial independence plays a major role in this. Lack of financial independence has been found to be one of the most significant risk factors for being exposed to intimate partner violence and represents a major barrier to escaping an abusive relationship.

We are encouraged to see that within the recommendations produced by the citizens' assembly on care and social protection there is no suggestion of measures which disempower or deliberately uproot the lives of disabled women and gender minorities in the name of safety. When abuse is directed at disabled gender minority people, we are often met with safeguarding responses that remove disabled people from our communities, disempower them and ultimately fail to protect them. As calls for increased safeguarding powers grow louder, we want to be clear that we do not support this and they do not protect us. We need to examine both the causative and protective factors relating to the violence against disabled women and gender minorities, just as we do for their non-disabled peers, in order to substantially address and reduce this violence. Approaches which rely on a safeguarding approach fail to look past assumptions about our inherent vulnerability to the reality of our lives, and risk restricting or denying our human rights, including our equal right to autonomy, in the name of keeping us safe.

We are encouraged by the steps taken by the committee to prioritise the voices and views of disabled people and their representative disabled persons’ organisations or DPOs on all issues which

impact our lives, as required by the UNCRPD, and hope this marks the beginning of a fruitful and ongoing conversation between the committee members and DPOs which ensures no-one is left behind when implementing-----

Chairman

I think we lost you there Ms Hassett. The line went down but you were almost concluded. I thank you both and I apologise again for curtailing due to time limits.

I invite Ms Fiona Weldon to make an opening statement on behalf of the Independent Living Movement Ireland.

Ms Fiona Weldon

Good morning everybody. I thank the committee for the opportunity to come and share our experiences and observations regarding the citizens’ assembly recommendations on care and social protection in relation to disabled people. We speak to you today as disabled women and not women with a disability. This is a social and political rights stance. Our impairments do not disable society though and this understanding will underpin our contributions today.

We are acutely aware that disabled people live in a world that systematically excludes us from the ordinary rhythms of daily living. We welcome the recommendations the citizens' assembly has made to tackle this issue but disabled people as a whole experience inequalities that have a detrimental effect on both our life chances and quality of life. We feel very strongly that we cannot address gender equality unless we address the reality that disabled women need to be, and feel equal to, their non-disabled counterparts. Some 13.8% of women in Ireland are disabled - that’s a lot of us. Disabled people are not a homogenous group. We are all intersectional. We hold many identities such as gender, race, belonging to an ethnic group, social class, religion, sexual orientation and ability and these identities can overlap with each another. Understanding intersectionality with regard to disability is essential for the creation of appropriate laws and policies and the design and delivery of accessible, inclusive services. Each and every one of us has our own unique experiences of discrimination and we must consider everything and anything that can marginalise us. Article 6 of the UNCRPD states disabled women experience multiple instances of discrimination. Ireland, having ratified the UNCRPD, must take measures to ensure disabled women have their human rights and fundamental freedoms adhered to and our government must put in place empowerment measures to ensure full participation in everyday living including education, employment, and family living.

Disabled people experience the same inequalities as non-disabled people. However, their situations are exacerbated by social and cultural attitudes to disability as well as environmental barriers. Disabled people have a lower uptake of health screening, are more likely to experience sexual violence, experience barriers to parenting, and are disproportionately affected by the extra costs they face because they are deemed to be disabled.

It is our lived, learned and professional experience that disabled people do not want to be reliant on their family for support unless both parties agree. Disabled people do not want carers, caring, home support or support services that impede their life chances to live like everyone else. These services only allow disabled people to exist and not live. We want and need access to tailored, person-centred supports that promote choice, control and self-determination in the form of a personal assistance service. This provision must become a right and must not be subject to resource availability.

A personal assistant, PA, is an individual contracted by a disabled person to provide him or her with the support he or she needs in different aspects of daily living. This assistance can look different to all of us because we all have different needs. Some tasks a PA carries out include support with intimate care, being a homemaker, providing assistance at school, university and the workplace, and parental support. When out and about, some disabled people need assistance with money management, navigating their environment or support with directing their PAs. There is no cut-off age for the provision of this support. I hand over to Ms Daly.

Chairman

Again, I am conscious of time. We all have the opening statements. I thank Ms Weldon for that.

Ms Eileen Daly

It is our belief that parents of disabled children need support to understand the social model of disability and the systematic barriers disabled people face. As a disabled persons' organisation, DPO, Independent Living Movement Ireland recognises that many of the so-called supportive structures mostly promote exclusionary practices that separate disabled people from their non-disabled peers in the home, at school, at work and in their social life.

We believe that capacity building is paramount to support parents in demanding their right to quality support in ensuring their children grow up to live good lives, and this includes the provision of inclusive education. Parents should not be forced into battling with healthcare professionals to get the supports their children need. Disabled children have rights, just like every other child. Parents must have access to appropriate and tailored person-centred supports that assist them with their parental duties, if and when required, and this must become an automatic right. They must also be supported to work and have a career if they so wish. They must not be forced to give up work, reduce their working hours, or not advance their careers just because they are obliged to stay at home. It is also worth mentioning that there is an additional cost factor for families of disabled children and adults.

Disabled women need access to appropriate healthcare that meets their specific needs. Many healthcare services are inaccessible. Last year, ILMI hosted a consultation session with disabled women from across Ireland. We heard stories about going for a mammogram or a CervicalCheck screening or seeking gynaecology services were stark. Disabled women want a dignified experience. It is their belief that healthcare professionals require disability equality training to understand the inequalities disabled women face.

Disabled women are more at risk of sexual abuse and violence than their non-disabled counterparts. They need access to accessible information and awareness training about what constitutes sexual abuse and violence. We want all related healthcare services and support agencies or groups that work with survivors to be well informed and well equipped to support us, and these services must also be easily accessible. We want disabled women to be empowered, to speak up and have a no-tolerance view of sexual abuse and violence.

It is worth noting that 63.7% of disabled women are mothers and yet they are barely referenced in our current maternity strategy. Moreover, disabled people are often denied the right to make reproductive decisions, including decisions about fertility, contraception, pregnancy, childbirth and parenting. This is a human rights violation. As disabled women, we do not want the powers-that-be to assess our ability to have children nor question our ability or skills to look after them. As women, it is our human right to have children if we so wish. All disabled people, if required-----

Chairman

Apologies to cut across you, Ms Daly, but would you mind wrapping up as we need to move on to questions and answers with members?

Ms Eileen Daly

Okay. I will conclude with some statistics and things to be mindful of regarding work and social protection payments for disabled people. Data from the 2016 census showed that 30% of disabled people received a third level education compared with 47% of non-disabled people. Disabled girls and teenagers must have equal access to a broad range of subject choices that reflect their personal abilities and interests.

Professionals working with disabled people should ensure all their services are fully inclusive and have accessible funding streams. We should have access to accessible healthcare, employment and education - essentially, equal access to all areas of life so as to participate as equal citizens in the State.

Chairman

Apologies again for curtailing opening statements. I thank witnesses for the comprehensive information provided in each statement received and appreciate their engagement. I now turn to committee members to open the discussion. As we have always done, a time limit will be put on each exchange, so we may not get to each witness for each question.

Senator Alice-Mary Higgins

This session has focused on care and social protection. The points Ms Daly made are very relevant to the recommendations of the citizens' assembly on violence against women. We will incorporate those important points. I was struck by the request for ongoing training of persons working in the Department of Social Protection. It sounds like the same training is also needed in the health services in terms of engaging with women and gender minorities with a disability.

It was striking because when looking at gender equality, many organisations have experienced that intersectional layer of discrimination. It is good that this issue was highlighted.

I have a number of questions about social protection because that is the area we will drill in to. On means testing and the call for the requirement of individualised social protection, from what we have heard from other witnesses, it means that we should not be looking at means testing or a household income solely when there are individuals and adults in that household who do not have independent access to income. There is potential to interpret the reference to "individualised" in the recommendations as meaning there should be a move away from means testing. I seek further comment on the importance of independence of income.

The recommendations for a universal pension have been very good and strong. While we have the recommendation that every individual would receive a universal pension, how do we ensure that it reflects the cost of disability? At present, when disabled people get to a certain age, their disability needs are not adequately recognised.

I refer to choices relating to independent living. Some of what we are considering is how the statutory entitlement to home care is interpreted. In failing to deliver that entitlement, it seems the debate has moved on to include personal needs assistants as part of what the statutory entitlement should be, for those who chose that service. Will the witness comment on that?

Ms Ní Fhlatharta mentioned institutionalisation in the home or in residential facilities, about which I am concerned. The DFI, has done a lot of work in this area, on the routes out of institutionalisation for those in certain care situations. If we change things, we need to change them not just for the new people accessing care but those who are in residential care. How does one move out of that model or what of a person in family care who wanted to move towards independent living options as they become available? It is important to have routes of choice outward.

What was said about the pandemic unemployment payment, PUP, in terms of the effective rates of poverty going down was striking. We should look to that in general as it relates to the adequacy of social protection payments. Not only was taking people out of poverty mentioned but the deprivation index was also raised. The example of going for coffee was interesting. In our deprivation basket of goods, being able to host a friend should be included in the standard. Do we use the minimum essential standard of living that the Vincentians have been looking for? How do we measure whether people are actually living fully?

The question on respite was interesting. Perhaps it is not the right word but what was interesting about the recommendation was that it refers to the range of options. That may provide opportunities for those in residential care, as well as those with home care, to say that they want to go on holidays, take on a project, do a course, or whatever they want to do. What do the witnesses think about that?

I know I am out of time. I thank the witnesses for their strong presentations. They strengthen and give depth to the Citizens' Assembly recommendations and are true to their spirit. Lastly, the witnesses should comment on issues relating to people with a disability who are carers, parents and carers more generally and on what specific supports are available to them.

Chairman

There is no pressure there on all of those issues. Ms Hassett and Ms Ní Fhlatharta, both from Disabled Women Ireland, as well as Ms Weldon have indicated. I will take their responses and then move on to the next questioner, Deputy Clarke, when we will prioritise the responses of the other witnesses.

Senator Alice-Mary Higgins

Perhaps Ms Phelan could answer some of my questions on social protection when she is answering Deputy Clarke

Ms Amy Hassett

I will touch on a number of these questions. We have been advocating for quite a while, that is, for more than a year or a year and a half at least, for the removal of means testing of disability allowance and having the allowance regarded as a cost of disability payment. It will not solve all the problems but doing so would go a significant way. Individualised support is very important and would be a good starting point.

We have a major issue with pensions in that once someone reaches the age of 65 years, across the board in all disability supports, they are no longer considered disabled and are just considered to be old. This is creating major barriers, which Ms Ní Fhlatharta did not get to address. The transitioning of supports between childhood and adulthood is a challenge, but so is the transition from adult to old age, which may not be the most appropriate way of handling matters. It is consistently reported to us as being a significant barrier. As for how we do pensions, we also need to consider the cost of disability. It could be something different, like preventing a person from being aged out of the disability allowance, which might be the most direct way we deal with that. Again, this would not be the entire solution but most certainly would be part of it.

Moving towards personal assistance services, which are more tailored and afford disabled people a lot more control over the support they receive, is the way we need to be looking at it. Home care can be quite restricted and prescriptive in terms of the supports a person is provided with. We want something that is more flexible and puts disabled people at the centre so they can decide what they need help with. Home care does not necessarily meet those requirements but Ms Ní Fhlatharta will probably speak more to that.

Ms Maria Ní Fhlatharta

I will further add to what Ms Hassett has comprehensively dealt with regarding some of the economic issues. The root of a few of the Senator's questions comes down to the same issue, which is the agency and autonomy people have in deciding what their support looks like and what support they need to live what they consider to be a good life. This touches on choice in support and home care, routes out of institutionalisation, institutionalisation in the home, and the issues around respite.

A lot of the time, home care services are not delivered in a manner that is emancipatory or centres the person. People do not have control over who is entering their lives and what kind of supports they get. It should not be called support but they are grateful to have anything. This is not how we should model support for disabled people at any age. As Ms Hassett reiterated, this also applies to older people, particularly older disabled women who seem to be especially disadvantaged.

There are different forms of institutionalisation. In the home, if people do not have a choice about the care - "care" can be a fraught word in our community - or support they are receiving, it is not support. If they do not have control or agency over their lives, they can end up experiencing institutionalisation in their own home or even in a supported living arrangement that is supposed to be or nominally is community based. We need to interrogate that and ensure that people have choice and control over the care and support they receive.

Looking at routes out of institutionalisation, we are supposed to be decongregating and moving people out of institutionalised settings. A lot of the time this stuff is fraught and people can struggle when faced with de-institutionalisation or leaving an institution. That is because people's personal experience of institutionalisation is an absolute nightmare and they suffer significant trauma, which they need support in overcoming. At a point when we are closing down institutions in this country, however, we completely fail to support people in exercising control or choice. We move them out of communities that they might be familiar with and instead of something that should be an incredibly empowering experience, we approach it with such little regard to someone's autonomy that it is not seen or experienced as such.

Ms Hassett covered the range of institutions quite well. We want people to be able to have breaks from the people they live with in the same way that we all need breaks from the people we live with. We want people to experience different things but we cannot do that in a way that effectively means that first, disabled people are painted as burdens, which is such a danger and second, that people are placed in institutions because of that.

Ms Fiona Weldon

The other witnesses have covered what I was going to bring up. The lack of a personal assistant service is very stark in Ireland. If we had a rights-based approach to personal assistants some of the inequality that disabled people face would not be there with regard to access to education and living the normal rhythm of life. Many disabled people are forced to use supports they do not want to use. They do not have choice, autonomy or self-determination. Disabled people are less likely to have meaningful jobs than their non-disabled counterparts. The other witnesses have made the other points I was going to make.

Chairman

I thank Ms Weldon and I am sorry about the technical difficulty with the line.

Deputy Sorca Clarke

I thank our witnesses. Reading the citizens' assembly report the one thing that struck me was that citizens did not believe in the entrenched level of poverty that people with disabilities live with. If this is the case it cannot be justified by the State. This came across very loud and clear in the report. I want to touch on several areas. As it stands there is broad agreement among all political parties and Independent politicians that specific service supports and resources need to be put in place for people to be able to live independently. At the same time we see these chronic blockages to this happening. There appears to be an institutional inability to listen to those with a disability and to value the voices and words of those who live with disability and who love people with disabilities as to what it is their needs are. Independent Living Movement Ireland will come to the Oireachtas next week for an event on personal assistants. I hope it is well attended. It is critical that work on this is done.

Ms Ní Fhlatharta touched on the pathways for people to be able to live independently. At this point have we any pathway that works functionally? Has any pathway in existence, which has been designed with a disabled person in mind, delivered for somebody with a disability? The area of institutionalisation is a very important part, particularly with regard to people becoming institutionalised in their own homes. One of the opening statements mentioned a take-it-or-leave-it attitude that is sometimes seen by those with disabilities. I ask Ms Ní Fhlatharta to comment on this from the perspective of a younger person and as somebody who, as has been mentioned, ages out of the disability payment.

Domestic violence and abuse against people with disabilities have been referenced. We know the statistics of those with disabilities and their experience of domestic abuse, domestic violence and gender-based violence. What interaction have the groups had with the Minister and the Department on the upcoming strategy on domestic and gender-based abuse?

Chairman

Deputy Clarke is getting to the heart of things. I will go first to Ms Daly as I am conscious she did not speak on the previous question. One of Deputy Clarke's questions is directly about Independent Living Movement Ireland.

Ms Eileen Daly

I will address the issue of institutionalisation and the pathways out of it. To be honest, it is very challenging, as everyone has said. Institutionalisation is a complex issue. As we know, it is not just a matter of taking someone from the four walls they are familiar with. People need support. They need the people they want around them, including professionals in many areas who will advocate with them and for them and really get to know who they are as people and what they want. Many disabled women and men who live in institutional care have not been exposed or given the right to make basic decisions such as what they want to wear, what they want to eat for their dinner or who they want to hang out with. Expecting someone to suddenly be able to run a household and manage money is alien. However, it can be done and it has been done. It needs to be done in very creative ways where people's experiences and voices need to be heard. The HSE and other agencies need to work collaboratively with disabled persons organisations and other services that support a person's right to choice and control at whatever age.

With regard to young people I will refer specifically to my own experience. I am very thankful that as an 18 and 19 year old I was able to experience life on campus in UCD. I do not know whether that would happen today. It has really shaped who I am. It would not have happened had it not been for the Centre for Independent Living, which is now Independent Living Movement Ireland. Many young disabled men and women do not have this access at present. It is a rite of passage to assist a young person to get to know who they are.

I want to refer to the rights of older persons. Many older women with a disability want to continue to lead active and full lives. Just because someone is over 65 it does not mean they do not have the right to contribute to society. It is ageist and it is a form of discrimination. Ms Weldon would be more familiar with the policy issues that Independent Living Movement Ireland is working on with regard to gender-based violence.

Chairman

I thank Ms Daly. I will now go to Ms Phelan becomes she did not speak on the previous question either. I will then go to Ms Weldon and anyone else who wants to come in to respond to Deputy Clarke's questions.

Ms Fleachta Phelan

On the pathways out of institutionalisation, as members know it is about the services being connected and Departments speaking to each other and co-ordinating. An issue I work on is housing. We often have the experience of people getting an offer of a house from a local authority but the personal assistant hours or support package required is not available on the health side to enable people to move into the house. We have the crazy situation where people are unable to take up a housing offer because they cannot move forward. To come back to the question asked by Senator Higgins, one of the most dramatic examples of this is the more than 1,300 people who are inappropriately placed in nursing homes due to the lack of supports in the system.

On income adequacy and the PUP, I completely agree with the Deputy that it is very heartening to some extent to see how strongly the citizens took a line on this when they looked at it. It is striking and concerning because while there was significant political will in the country to provide an adequate income almost overnight when large swathes of the population suddenly lost their income, there seems to be an acceptance that it is okay for disabled individuals to live for the rest of their lives on a completely inadequate income. It is an entrenched institutionalised inequality.

Something we sometimes hear in the discussion is the need to incentivise disabled individuals into the workforce.

We know employment rates are substantially lower than EU averages. There is scope to address the structural barriers to employment and to increase employment rates, but I am extremely concerned about individuals who cannot work due to their disability. The idea that we could incentivise those individuals by keeping them on an income which is below the poverty line is completely inadequate. On the question of what is adequate, there is a broad societal commitment to the minimum essential standard of living among anti-poverty groups. Meitheal does not factor in the extra cost of disability. If one wishes for adequate provision, one one has to build in the substantial extra costs that we are aware of.

Chairman

A few more witnesses want to respond. Ms Weldon might come back in to follow up on Ms Daly. I will then call Deputy Hourigan and invite Ms Ní Fhlatharta and Ms Hassett to respond first.

Ms Fiona Weldon

I am worried that we are not addressing the issue that disability is a negative term. Being defined as disabled, whether by non-disabled people or disabled people, is very negative, which is not okay. Disabled people can disable their own self-belief. We grow up in Ireland with negative thinking about being different, not being the same and not being equal. We need to address that. We need to empower disabled people, including disabled women, because we are at the margins, being defined as disabled people.

The issue of sexual violence is stark. In my experience, many disabled women and some disabled men have experienced it, but it is not discussed or talked about. It is as if they say that they are disabled and this is part and parcel of life as a disabled person.

Some 80% of disabled people do not have any meaningful employment. Why is that okay? Why is it okay that they need to go to resource centres and day activation services? Why is it okay that they do not participate in the normal rhythms of life? That is not okay. We are talking about people without people.

Chairman

I thank Ms Weldon. That was powerful.

Deputy Neasa Hourigan

I might pick up on Ms Weldon's points about the negative connotations when we talk about disability. A number of opening statements today identified how rich and diverse the lives of women with disability are. Many are parents. Many are also carers. People who are not engaged with this discussion may not properly identify that many people in our society have a disability of one type or another, across a spectrum of disabilities, and they are living incredibly rich, diverse lives, which needs to be recognised by policy.

I want to use my time to focus on a particular part of that policy. I know Ms Ní Fhlatharta referred in her opening statement to how disabled women are often carers and sometimes work at the same time. One of the strongest recommendations of the citizens' assembly relates to the right to access flexible working. I have been on the Joint Committee on Disability Matters for some time. We have had many sessions on the incredibly low levels of employment among women with a disability. It strikes me that we are not doing enough to develop types of employment or access to employment that truly suits women who have caring responsibilities and-or disability to deal with. Could we talk a little about that? We have some legislation about working from home and we have work-life balance legislation. I notice that legislation is limited to carers and parents. That may be a missed opportunity and may pose a problem to parents who are looking for employment who would be eligible for that programme.

The EU structures for flexible working include things like job-sharing, the four-day week, working from home, remote working and flexible working. We have a four-day week pilot and yet not one Government Department or significant public body is participating in it. I would like to hand over to the witnesses and to hear about what would break down some barriers to employment. I know it is not just a matter of flexible working and that there are also issues relating to access to supports such as technology or personal assistance in the workplace. Should the pathways follow the person or the employment? How does one even navigate getting an interview? I would like to focus on that area if possible.

Chairman

I will call Ms Ní Fhlatharta and Ms Hassett first because they did not get in during the last round. If they would like to address any points raised in the previous round, that would be great.

Ms Maria Ní Fhlatharta

People might have been surprised at the emphasis on violence against disabled women in the submissions from us and from ILMI. The simple fact is that supporting care and social protection are key reasons we experience much higher rates of violence in our community. If we do not have the financial independence to leave certain situations or we have been forced into being financially dependent on an abuser, then we become vulnerable. If we have no choice and are forced into the take it or leave it mentality with regard to care, that also creates vulnerability. It is not our bodies or minds that are vulnerable but the structures in the State which actively disempower us. Ms Hassett will address a couple of matters related to that and consultation, because we have input on that.

To answer Deputy Hourigan's question directly, flexible working is one issue. Ultimately, all of this has to come together in order for us to live full lives where we can have everything, work, have families and be supported in doing so on our own terms. What we are seeing right now in the legislation tabled on flexible work conditions is significantly weaker than what we were already entitled to as disabled people, as a reasonable accommodation. The legal standard set out for me to request to work from home as a reasonable accommodation because of my disability is much higher. Now, we are seeing employers say that they may have to give a written refusal. A broader idea of flexible working has been presented which waters down something that was already a key right for disabled people. It was not necessarily honoured all the time, but it existed. We now see discussions about flexible working and working from home that ultimately create more rigid systems than we should have been entitled to already as disabled people.

We see, again and again, the idea that we have to fit these rigid definitions of what we need to look like as a worker or to be as a disabled person accessing work. When supported employment systems are implemented, they are often capped. People might have access to a certain level of work or a job.

However, it is never going to be meaningful if there is no access to progress up the ladder within that. These are significant issues that come up.

When it comes to having a whole-life picture, of which work is one part, flexibility is absolutely essential. If we continue to create systems that are fragmented and bitty and in which people have to fit into one box to have access, we will never be able to create a system that will really empower disabled people to engage meaningfully with the workplace if that is something they want to do. I am almost discouraged that having moved through the pandemic and towards more flexible working conditions over the past two years, there is now massive pressure to get people back into the office. We are even seeing organisations that supposedly have a disability rights focus being really resistant to creating those flexible working conditions. As we roll back on absolutely everything employers were happy to roll out for non-disabled people over the course of the pandemic, I am less hopeful than I previously was. We have shown we can do all of this remotely and flexibly over the past two years, which gave more of a balance than we ever had before. Right now, however, we are seeing a return to conferences not offering hybrid options, workplaces demanding that people go into the office and a return to nine-to-five working.

The important point was made that no Departments have offered a four-day work week arrangement. We have been told there will be an increased participation of people with disabilities within the Civil Service to 6% of the total workforce, but that is less then half of the representative number. Let us be very clear about that, taking into account that the incidence of disability is counted very narrowly in the census and very widely in terms of who is counted as a disabled employee in the Civil Service. I am not optimistic in this regard. I think the Civil Service is a particularly stark example of where action is just not being taken in this regard, and it is reflected in all kinds of employment all over the island.

My colleague, Ms Hassett, might comment quickly on the consultation.

Deputy Neasa Hourigan

If I may, I would like to interject on a point of information. We have moved to a target of 6% in the Civil Service in Ireland, whereas the target is 10% in the UK, which is what we should be aiming for.

Chairman

That is a very interesting and important point.

Ms Amy Hassett

Deputy Clarke asked about our engagement with the development of the new strategy for gender-based violence. We made a submission to the research team when it was holding consultations. In addition, we held a consultation with intellectually disabled women, in collaboration with another disabled people's organisation, DPO, the National Platform of Self Advocates. We were supported by Inclusion Ireland in doing that. We submitted the results of our consultation to the research term. We were not initially contacted directly or approached by those who were working on the strategy. We were quite disappointed by this given that, to my knowledge, we are the only national DPO representing disabled gender minorities. We highlighted that lack of consultation to the research team at the time.

An important point relates to how the parameters of the research were defined in that they did not cover some of the unique types of violence experienced by disabled women, including, for example, violence perpetrated by a caregiver. We had to argue for those points even to be considered. The team was a little more open after these initial conversations but it was something of a difficult road to get there. The reason I am being explicit about this relates to Deputy Hourigan's point. Disabled people live rich and diverse lives and this has always been the case. We may not always have been recognised as living rich and diverse lives but we have always done so. The question we really have to ask ourselves collectively, given this has always been the case, is why our policies do not reflect that reality.

Fundamentally, what it comes down to is that disabled people and DPOs are not involved in designing policies. We are consulted but whether our views are taken on board is an entirely different question. The reason the strategy did not necessarily include within its parameters issues relating to disabled women is that disabled people were not involved in the designing of those parameters. When we think about how to create policies that will suit disabled people and will be specifically flexible to encompass disability and all the different sorts of marginalisations people can experience, we need to think holistically. We need to start involving those people in designing the policies, the research and the systems we use to address the problems and reflect the kind of diverse and rich lives disables people lead. We have the experience, knowledge and expertise and we are happy to provide it if we are given appropriate supports to do so.

Ms Eileen Daly

I want to address the issues around employment. We need to go back a lot further to consider why disabled people, both women and men, do not see employment as a right for themselves. We need to look at how a disabled child is given a label or diagnosis. Whether or not we realise it, we all make assumptions. Our expectations for children with disabilities as they grow into teenagers and adults are different from those for their non-disabled counterparts. Fortunately, mainstream education is becoming more inclusive, but we still have a way to go. This is something about which I feel very strongly. We were getting there but there still is a way to go. As members will know, within the special education system, which is a term I like, there is currently no career guidance available to disabled students. I would argue that even in mainstream education, where people need bespoke information or services, teachers and other education professionals do not have adequate information or expertise to deal with specific issues students need to be addressed.

Difficulty in accessing education at third level is still a barrier for many people. This comes back to a lack of expectation in the first place and the lack of a flexible curriculum to accommodate diverse learning styles and abilities. How then can employment even be accessible to many disabled women? We know from the research and statistics that, generally for girls, there is a very low uptake of science, technology, engineering and mathematics, STEM, subjects, and this is even more the case for disabled girls. I work a lot with individual women and groups of women who want to challenge themselves and move into employment and meaningful careers of their choice. It is all about raising expectations, providing information and supporting people to get where they want to go.

The other side of that is supporting employers. We need to open a dialogue with them, answer their questions and help them to navigate the system and provide reasonable accommodations that will support disabled employees to be productive and to move up the employment ladder if they so wish. If part-time employment or volunteering is what somebody wants, it should not be frowned upon. We all have a right to contribute in whatever way we want in order to be our best selves. Paid employment is something to which many people aspire.

However, if it is something that a person is unable to participate in for whatever reason despite wanting to, we need to think outside the box and adapt policies to accommodate that.

Chairman

I thank Ms Daly. Ms Weldon has pointed out in the Teams chat that many disabled persons have a third level education yet cannot secure employment, which is an important observation.

As no other members are indicating, Ms Weldon wishes to contribute. I invite Ms Phelan to contribute, after which I will ask any of the other witnesses who would like to make a final set of points to contribute. I might ask them to focus particularly on recommendation No. 12 of the Citizens' Assembly, which was about lifelong care for persons with disabilities and stated that there should not be any break in the services provided, or any need to reapply for support, when a person turns 18 years of age. What specific measures should we be recommending as a way of implementing this recommendation? Interestingly, quite a number of the witnesses have focused on the other break point of 65 years and the sudden difference in measures when someone reaches that age. That is a valuable point that we have taken on board. Is there a practical response to recommendation No. 12?

I invite Ms Weldon, Ms Phelan and then any of the other witnesses who would like to make final observations on any of the points we have raised or anything they believe we should have considered but did not today.

Ms Fiona Weldon

As I said in my opening statement, disabled people do not want carers, caring, home support or support services that impede their chances to live like everyone else. We want support with the right to personal assistance services. This goes for all disabled people, not just physically disabled ones.

I am not 65 years of age yet, but I will be, and when I turn 65, it will be like I am no longer disabled. I will be an older person and I will only be able to fit into the older person's support services, which is ludicrous. ILMI is continually advocating and we have a campaign for rights-based support services in the form of personal assistance. We do not have that yet, with the current service being ad hoc and different in every county. I have vast experience of supporting disabled people of all walks of life to secure personal support services that help them to live the normal rhythms of life. It has taken up to three years to get agreement from the HSE to give some people those services. That has involved hard work on developing their support plans but we have also needed to work with other agencies, for example, local and national politicians. That is simply crazy. If we had the right to personal assistance, many barriers would disappear. We could do, we could live, we could be like a non-disabled person can.

Chairman

Deputy Clarke wishes to make a small observation before I invite Ms Phelan to contribute.

Deputy Sorca Clarke

Ms Phelan touched on the issue of housing. If there is to be a universal basic income for an individual, surely work must be done on the means test for adaptation grants, particularly where there is a high level of need.

There is an anomaly. I call it that because I do not believe that anyone set out to do this deliberately. That person just did not think. Modern families are not reflected in grant applications, particularly applications in respect of children whose parents are no longer married. That status does not diminish the needs of the child, but it has a profound impact on the child's ability to stay with a parent if the house does not have a level access toilet, bathroom or something specific to the child's needs.

Ms Daly touched on the important matter of education. Previously, this committee heard from those in education as well as education providers that there appeared to be a pigeonholing of women and girls in terms of the availability of subjects, even at secondary level. Are we saying that women with disabilities are further disenfranchised from third level or meaningful employment if they cannot access even the low level of education options that other women can? We are at real risk of creating an unequal education system for people with disabilities if this issue is not addressed.

My final point is for Ms Phelan. Reference was made to assistive technology. Good work was done on adapting homes with integrated assistive technology, for example, a wheelchair user being able to use a control panel to open windows behind counters. How much more of that has Ms Phelan seen? How prevalent are such houses? I can think of two in the entire country.

Chairman

Ms Phelan might address those questions and make any other point she wishes by way of conclusion. After that, I will move on to each of the other witnesses who have not yet spoken in this round.

Ms Fleachta Phelan

Transition points are always a key issue and are raised often. I am sure that the others will have something to say on this matter as well. The transition point is not just at 18 years of age. People can get disability allowance at 16 and, if they manage to attend further or higher education, there is another transition point at the end of that process. A classic issue that arises is of someone having a personal assistant to support him or her throughout university but, at exactly the time he or she needs the personal assistant for support in applying for employment, the person loses the assistance because its funding is attached to the education of which he or she had been in receipt. The person goes back to being on his or her own without the personal assistant's support. This often has to do with funding lines, consistency across Departments and where the breaks occur.

Another issue that arises where transition points occur or qualifications are received is that of the Department of Social Protection writing out to people checking to see whether they still have disabilities. People can make very dark responses to that. For example, they might say, "My limb has not grown back in the interim but thank you very much for checking."

I agree with the Deputy regarding housing and means testing. A key point that we would make, particularly now that we have the cost of disability report - we already knew, but it is there in black and white now - is that the means test does not in any way factor in the extra cost of disability. It should be included in the thresholds. The maximum allocation has not been increased in more than ten years. This week, the Department announced a review of the adaptation grants. Many of our organisations will be submitting strong consultations making recommendations in that regard.

I take the Deputy's point on modern families. We sometimes hear from separated parents. Often, the father has a disabled child staying with him on weekends and is struggling to find a housing situation that is suitable for the child because the mother, being the child's primary carer, has managed to stay in the home where there is already a system in place. There is not much support for the other parent.

The number of smart homes is increasing, but there are not many examples. The new housing strategy for disabled people is starting to be rolled out. As assistive technology reduces in cost, there will be many opportunities. It is also a question of having an approach of building universally designed homes in general.

I will make a few points about the issue of poverty, given that we are wrapping up.

We rank among the worst countries in the European Union for the poverty of disabled people. We are ranked among Latvia, Lithuania, Estonia, and Bulgaria - with no disrespect to those countries. As a rich European country that ranks mid-table to high-table on many social indicator tables at EU level, it is distinctly shocking. The roadmap for social inclusion includes the only specific poverty reduction targets that we have for disabled people. We are aiming to lower poverty rates for disabled people by 2030 to rates that are higher than our current levels for the general population. While it is extremely problematic to have an unequal set of goals, they are the only goals we have and we use them to argue to the Department. While we have those goals, there are no actions in the roadmap that indicate how we will get there. We will absolutely not get there by the Government giving €5 every year or second year. It is just not going to get us there. There is also very important work by the Society of St. Vincent de Paul that records and estimates the public service cost of poverty. The idea is that it is too costly to give people a decent income and yet we are not factoring in all the other systemic costs that poverty creates around health, our justice system, and all sorts of other costs that are there.

We have seen how our citizens' assemblies in this country have often been ahead of the system. The citizens have deliberated and made recommendations, while the system does not seem to be ready to be there with them. There is one source of hope for all of us. As Deputy Clarke said, the public is willing to pay extra to move towards a fairer system. The question is why the system is unwilling.

On the question as to why the system is unwilling, I mentioned the issue of incentivisation earlier. I find it concerning that in some discussions with the Department of Social Protection on a set of policy spaces, some officials have asked whether it is the job of the Department to provide an income above poverty level to individuals. We argue emphatically that it absolutely is. It is concerning to hear that response. We have to look at how on earth we move towards that goal.

I refer to two pieces of research that are relevant. We have not mentioned how there is a disability pay gap for disabled women in the workforce. The disability pay gap is higher for women than it is for men; surprise, surprise. That is another issue that needs to be considered. There is also an important piece of research by the Economic and Social Research Institute, ESRI, from last year that looks at children in poverty. It highlights the fact that children of disabled parents are substantially more likely to live in poverty and are more likely to live with difficult health conditions. This is particularly the case if the mother has a disability. It is an area that requires a lot of attention.

To conclude on a slightly broader point, I attended the National Economic Dialogue as part of my work on Monday this week and, yesterday, I took the train to Balbriggan to attend the Social Inclusion Forum. The forum is run by the Department of Social Protection and the National Economic Dialogue is run by the Department of Finance. I was struck by the gender make-up of the attendees at both events. It may not surprise committee members that at the National Economic Dialogue - it is a guesstimate - there was a 70% male participation and 30% female participation. At the Social Inclusion Forum, the balance was reversed. This was very striking. At the National Economic Dialogue, the Department of Social Protection ran a workshop, which many of us attended, and it was very focused on labour force participation. There is an increasing focus from the Department to bring disabled people back into the employment market. As we are at full employment levels, there is now an interest in those groups. However, the word "poverty" was not discussed in the workshop until many of us showed up and raised it.

The broader point is the question around gendered understandings of who speaks in which spaces and in which areas of expertise. It was very striking to see the gender balance being primarily male in the economic space and primarily female in the social inclusion space. The question I put to the Minister of State, Deputy Joe O'Brien, in our discussions at the Social Inclusion Forum yesterday was how we bring those two spaces together, because there are separate conversations on economics in one room and social inclusion in another and yet our economy should run to support our society, including all our disabled citizens.

Chairman

I am conscious we are on a closing round but I see Deputy Carroll MacNeill has joined us online. If the Deputy would like to make a point or ask a question, we will then go to Ms Ní Fhlatharta, Ms Hassett and Ms Daly.

Deputy Jennifer Carroll MacNeill

I am sorry for being so late. As the Chair will know, I was attending a meeting of the Committee of Public Accounts this morning. I have an observation to make on what Ms Phelan said about the two different rooms and the economy and social inclusion divide. I want to back up that point. I worked as a Government adviser for nearly ten years. Much of this was on the social side involving the Department with responsibility for children, the Department of Justice, and the State. On the economic side, it involved the Department with responsibility for housing, where decisions are made that have huge commercial effects and are broadly financial decisions. The same gender divide that Ms Phelan mentioned was replicated in that context. For example, I recall meetings on the establishment of the Land Development Agency, which is a huge multibillion euro project that is capable of providing significant financing. There were 25 to 30 representatives around the table and I recall being the only woman who spoke at those meetings. It stood out to me, having spent so much time on the social side of Government. It is about bringing it together and even calling out the fact that the rooms look are different. I do not know if everyone else is observing this. It is important that the people who make up the 70% on the economic side recognise that there is something wrong with the look of their room. I wanted to amplify the point that was made because it is an issue that cuts across the work we are doing more generally.

Chairman

That is absolutely right. I call Ms Ní Fhlatharta, Ms Hassett and then Ms Daly to respond to that point or others made by way of a closing round.

Ms Maria Ní Fhlatharta

I will touch briefly on the gender divide between economics and social inclusion. It is not a particularly difficult issue to understand. The economists are serving GDP. The social inclusion people are focused on people. The fact is that if we decide that economics is all about GDP, it will never service people, the citizens of our State, and because we have decided that is the way it is, we will never bridge that divide. It probably says something nice about our gender that we are not the ones dominating in the economic room.

This is also reflected in our housing strategy, where housing is seen as an asset and a commodity as opposed to a vital public service. We have seen that dichotomy throughout the history of the State. I want to point out that because of this decision, Ms Hassett and I are part of a generation that is locked out of the housing market. No amount of education will compensate for that. Finding rental properties that accepts a housing adaption grant is kind of impossible. This has also been made significantly difficult by the fact that the first Fine Gael-led coalition decided to row back on housing accessibility standards in a big way. Obviously, that was during a financial crash but it has made housing less accessible than it was when we were building crap houses during the boom. Again, it was an excellent economic decision that serviced GDP, as opposed to the people of this island.

We talked a little bit about transitions and I will finish on this point. The transition is not just to 18 years of age. The fact is that we decide to transition children out of systems with a valid onward trajectory after their education, such as at three years of age, when we decide to send them to segregated preschools; at five years of age, when we decide to send them to segregated schools; at 12 years of age, when secondary school fails; or at 15 years of age, when the leaving certificate is seen to be too much for disabled people.

The fact is that the transition at 18 is just about the continuation of services. If there is not a valid pathway, however, because we have already decided that disabled kids do not deserve to be on one, then it really is not all that relevant anymore. We need that transition of services, but we must ensure that we have not put disabled people on the wrong path long before that stage. The reason we are all talking about what happens at the age of 65, and I point out that Ms Hassett is in her mid-20s, at best, and I am in my 30s, is because we talk about nursing homes and what is going to happen to us when we are old at a shocking rate and have done so forever. Does the committee know why? It is because we see what is happening to our disabled elders, who have fought their entire lives to stay out of institutions and who have then been thrown into nursing homes. Think about that. People have spent their entire lives fighting not to be put in an institution, only to be then told that they are no longer disabled and put into a nursing home.

Of course we are freaking out about the transition at that age. It has been basically threatening us. Even though we have a pandemic that effectively eradicated a large portion of the people living in nursing homes, this seems to be the preferable model of care for older people. It is the preferred model because it is massively profitable. This is the only reason why it is the case. Nursing homes make fantastic money. They actually cost the State and people more than it would to provide support for older and disabled people in their own homes. We are still building nursing homes, however, and we have decided that they are the right approach, even though what has happened to people in nursing homes is disgusting.

Of course we are talking about what will happen when we reach the age of 65, because we are all terrified. I am looking particularly in this context at younger human rights advocates who think that disability is never going to happen to them, even though it is only a step away. It is a step off a kerb, a virus or just as far away as something like that happening in anyone's life. The fact is that we are all going to end up in nursing homes with brunch options because they do not see it as a bad idea to put disabled or older people in nursing homes. Until it is seen as a bad idea, and I will not use unparliamentary language, it will not be an issue. Therefore, we are really going to focus on the age of 65. Part of the reason the focus is on those aged 18 is because parents and disabled people shout loudly about this aspect. Trust me when I say that if the committee members were to talk to a large group of disabled people, they would discover that we are greatly freaked out about the age of 65. I will leave it at that.

Chairman

I thank Ms Ní Fhlatharta for her contribution and her strongly made point. Several people wish to come back in. Senator Doherty is indicating. She has been with us online. We are, allegedly, in the closing round, but I call her to make some brief points. I will then go to Ms Hassett and Ms Daly to conclude.

Senator Regina Doherty

I have been listening all morning, and it has been an honour. I have an observation and not a question. When "they" were mentioned by Ms Ní Fhlatharta, it is us being referred to. I am so privileged to have been able to listen to Ms Ní Fhlatharta's contribution this morning because it was so heartfelt. I acknowledge the advocacy work that all the witnesses and organisations do. If there was ever a moment in time when it has been incumbent on us to look at the Indecon report and not to just leave it on a shelf, and it cost €180,000 to get it researched, this is it. The reason we did it, or I did it, was so we would have a substantial body of facts to be able to change political minds and policy. We have had those facts now for three years. The time for talking is long over; the time for action is now. I acknowledge the passion of all the witnesses. We are very lucky to have such passionate and determined women in this sphere to look after and to advocate on behalf of the tens of thousands of people with disabilities. I thank them all.

Chairman

Hear, hear. I thank Senator Doherty. We all endorse what she said. I call Ms. Hassett.

Ms Amy Hassett

I will try to tie together a few different points. One little thing dawned on me. I had forgotten the cost of disability report. We all need to remember in respect of that collection of information, that we are still struggling to get the fine-grained, detailed data we need concerning gender minorities. We have that report, but it does not contain a great deal on gender. This is impairing us in terms of fully understanding the extent of these problems. When we are talking about the data we have available, it is important to remember when we are going through this reporting procedure to the UNCRPD committee that we must think about how we collect data better. This is going to be one of the things that will be extremely important in the years to come. The question is how we can get the fine-grained, detailed data required, specifically relating to gender, and not just to women but also to other gender minorities. We essentially have no data on these aspects now. We are flying blind and as best we can, using accounts of experiences based on individual conversations and those kinds of things.

Regarding means testing, we talked about the means testing of housing adaptation grants. Earlier, we also talked about means testing for disability allowances and other social protection measures. The point I wish to reiterate in this respect is that removing means testing is a way of keeping people out of poverty. Equally, though, we must bear in mind that even if people are not living in poverty, having to account for the cost of disability in their daily lives is impairing them from planning for their future and from putting systems in place in that regard. Taking the example of middle-class people who are disabled, they will still find it more difficult to plan for their future and to invest in the things they wish to relative to a non-disabled person. Therefore, when we talk about means testing, it is an important aspect right across society. It is simply not fair that people who have disabilities incur more costs than people who do not. Nobody should be living in poverty, but fundamentally as well nobody should have to cover the costs of their disabilities. Everyone should be supported in society to enable them to have the ability to do so.

To come back to the Chair's question on how we can implement recommendation 12 in respect of transitioning through life stages and ensuring continuity of support, we have talked a lot about age and how ages represent major barriers in respect of the continuity of support. Geographic location is another element in this regard. The support services available to people depend to an incredible extent on where they live. If people move from one region to another, it is a nightmare to try to re-establish all these supports. I can tell the committee this because I am doing it right now and it has been taking about ten hours a week to try to get the systems in place.

Why is that the case? How can we do something about it? We must examine how we can overhaul the system and create one that is much more focused on the individual, that is, a system that is much more person-focused. How do we ensure that support follows the person? We talk about reasonable accommodations in employment. We are having the same issues in that regard where the supports are tied to the workplace rather than to individuals. We must explore how we can create systems that follow disabled people themselves, irrespective of where they move in the country and of what age they are. If we can do that, if we can build those systems and involve disabled people and other marginalised groups in building them, then we will start to deal with these problems and we will start improving the situation.

Chairman

I thank Ms Hassett very much. Services needing to follow the person is a great line. It sums up much of what we are saying. I thank all the witnesses as well for the observations and comments they have made on the MS Teams chat function, which the secretariat officials are noting. I call Ms Daly.

Ms Eileen Daly

Following on from what Ms Hassett said, I agree that supports need to follow people throughout their life cycle. I know many young people who desperately want and who have had the opportunity for employment, but many of them have been unable to take up such offers of employment because they do not have the right to a personal assistant, PA, to support them if they need that support. Additionally, the major issue here is that employers do not understand the role of a PA in the workplace. This is another issue on which there needs to be a great deal of education and awareness.

To finish, I will focus on access to healthcare and some of the actions that must happen in this regard. Access to healthcare is a major challenge for many disabled women, particularly if they need the support of a PA and equipment to transfer from a wheelchair, for example, onto an examination table or something like that. Therefore, the first point is that the environment is not physically accessible enough to meet the needs of many people, including mine. Second, many healthcare professionals do not understand or have never been informed or educated about the role of a PA in healthcare settings. Many people, and I have personal experience of this, do not want their families involved in their healthcare provision.

Those people have been living independently in the community with the support of their PAs for all their adult life and they want to continue that. Many of us also want the support of family members and that should be a right. However, if someone chooses not to have a family member's support, that should also be a right. I feel strongly that we need to educate in universities such as the Royal College of Surgeons in Ireland, University College Dublin and everywhere that provides training. I would be more than happy to be involved in programmes to do that. This is urgent. Many men and women are excluded from basic healthcare services. They are terrified to access them.

Returning to a point made earlier, there is a lack of understanding around personal space and bodily integrity for many people. People become ill. Others invade one's space when one needs a specific service. One's voice is forgotten. One may be in a position where one is ill and at that moment unable to articulate what one wants and needs. All these things need to be addressed. Disabled people and their advocates need to be involved in the process. We must be aware that it may not always be someone's wish for a support person to be a family member. He or she might prefer someone independent. It should be that person's choice and within his or her control.

Chairman

I thank Ms Daly for her powerful comment about healthcare. That is important. I will go to Ms Weldon for the last word as we finalise the wrap-up.

Ms Fiona Weldon

I have a few points to make. Ms Daly, Ms Hassett and Ms Ní Fhlatharta and I live in a system that supports difference. We have felt different. We do not facilitate disabled people to live an ordinary, minimal life. We are guardians, mothers, fathers and parents, and hold many other roles. I am a disabled mother of an adult son but it is scary to think that the Irish support system would have the right to assess my parental capacity to look after my son. That is ridiculous. It is crazy that we have to endure that sort of systematic oppression.

It was mentioned earlier that the disability sector is very profitable. There are many millions of euro involved. The stark reality is that it employs mostly non-disabled people. We need the DPOs, such as ILMI, Disabled Women Ireland and others, to be nourishing and available to be called upon when a disabled person needs an answer. Unless we are talked to, nothing is going to change.

Chairman

I thank Ms Weldon for that. I appreciate the engagement with all our guests today. I see Ms Ní Fhlatharta has a hand up but I am not sure if that is an old hand.

Ms Maria Ní Fhlatharta

It is a residual hand.

Chairman

That is a new phrase.

Ms Maria Ní Fhlatharta

There are many issues that need to be addressed by this committee at a later date.

Chairman

I thanks Ms Ní Fhlatharta. Ms Phelan said earlier that we could have a whole session on each of the recommendations of the citizens' assembly. I am conscious that we have covered an extensive range of issues with our guests this morning. We, on the committee, are grateful for our guests' time and for the fact they have shared their experiences, some of which were very personal. They have shared their expertise and passion with us. They have articulated powerfully the views, positions and experiences of many persons with disabilities in the context of the recommendations of the citizens' assembly. They have particularly focused on the gendered dimension of disability, which, of course, is our focus as the Joint Committee on Gender Equality. We are conscious, as our guests have pointed out, of the intersectional nature of the work we are doing.

Our guests have also shared with us the richness and diversity of the lives of the disabled persons they represent. They have articulated powerfully for the rights-based approach and for the principles of independence and self-determination. They have also pointed out, critically and rightly, some of the areas in which the recommendations of the citizens' assembly require some adjustment, change or difference in language. It has been incredibly valuable for us to hear from them today and to have the opportunity to develop our thinking and understanding of how we can best move to implement those important recommendations of the assembly. I should that many assembly members follow our proceedings online and engage with us. We are grateful to them and to all our guests.

On behalf of the committee, I thank Ms Fleachta Phelan from the Disability Federation of Ireland, Ms Amy Hassett and Ms Maria Ní Fhlatharta from Disabled Woman Ireland, and Ms Fiona Weldon and Ms Eileen Daly from ILMI. I thank them for taking the time to share their experience and expertise with the committee.

The joint committee adjourned at 11.26 a.m. until 9 a.m. on Thursday, 30 June 2022.