Michael Moynihan (Cork North West, Fianna Fail)
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The purpose of today's meeting is to discuss raising awareness of Article 23, which relates to respect for home and family life. From Disabled Women Ireland, we have Nem Kearns, Amy Hassett and Louise Milicevic, member and parent advocate. From the centre for disability law and policy, CDLP, at the University of Galway, we have Professor Eilionóir Flynn, director, and Emma Burns, researcher. All of the witnesses are joining us remotely and are very welcome to the committee. Because the Finance Bill is going through the Dáil and we are likely to be disturbed for votes and because the witnesses are joining us remotely, it will be best for everybody to take the opening statements the organisations have provided as read and to go straight into questions from the committee. It would be nearly impossible to adjourn as we normally do if we were required for votes. I make that suggestion out of respect for everybody.

I remind members of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside of the Houses in such a way as to make him or her identifiable. Members participating remotely are reminded that they can only join from within the confines of Leinster House.

Without further ado, I ask Deputy Ellis to put his questions to our witnesses.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank everyone for their input. I have read the different reports and the first thing that occurs to me is that many people who have disabilities are unaware of their rights, which is a big problem. Disabled parents are more at risk of losing custody of their children than anyone else, with removal rates as high as 80% in some cases. What barriers do people with disabilities who are seeking to adopt a child face? Are they prohibited from doing so? Is there legislation to ensure there is no discrimination against them? Perhaps the witnesses could give us an idea of the situation.

Disabled people are labelled as very high-risk when it comes to pregnancy. Will the witnesses discuss the move away from residential units for children with disabilities towards early-intervention family supports to keep children with disabilities in the family home that is required under Article 23? It is very important that the family is the focus. The people who have the disabilities are the prime focus but the family around them and the supports they receive are very important.

I note what was said about there having been a practice of sterilising people with intellectual disabilities. There was some mention of that still going on. Will the witnesses elaborate on that because it seems hard to understand how that could happen without people's consent or without those people having proper rights?

On the education process, is there a programme in all educational facilities that specifically targets people with intellectual disabilities and physical disabilities and that educates them on their rights?

Disabled Women Ireland has said that one in three victims of domestic abuse is a disabled woman. Is the figure as high as that? I am curious because it seems extremely high. People fear that, if they complain about domestic abuse, their children will be taken away from then and they will be victimised or reported. Does DWI come across that often?

With regard to people's rights in accessing abortion, contraceptives and so on, what obstacles do people with disabilities face?

Nem Kearns:

I thank the Deputy so much for his questions. There is quite a bit to cover so I might not be able to answer all of them in depth but I am happy to follow up so the Deputy should feel free to contact us if he would like more detail on any of those areas. I have made a few notes.

There is certainly less awareness of sexuality and relationships. Sex education is offered to disabled people at a far reduced rate. That has improved drastically and dramatically in recent years but there are generations, particularly of those living in institutional care, who have never been offered robust information on those areas of life. Traditionally, most institutions and charities have had a religious ethos and been tied to religious bodies. That can influence the information that is available to disabled people who are accessing information through those services. It is certainly something to look at. It has also led to an inequality of access to information regarding LGBTQ+ identities and sexuality. While it is great to see the updated sex education curriculum, it must be ensured that it is not delivered only in schools because not all disabled young people are in school settings. That is a big concern of ours.

It must be ensured that reaches everybody and that it includes robust information on relationships and consent rather than just sexuality because the Deputy is correct in saying that disabled people are targeted for abuse at far higher rates. The National Disability Authority, NDA, report in Ireland said disabled people are three times as likely to be targeted. We feel the international benchmark of four to five times as likely is probably a closer reflection of reality. That is for a number of reasons, many of them relating to social stigma and attitudes, the perception of disabled people as vulnerable, disbelief and barriers to reporting. Disabled people's bodily autonomy is also often completely denied and infringed upon from a very young age. They are not given adequate ways to express what is happening to them and are not even told what rights they have as regards people touching their bodies or infringing on their bodily autonomy. Disabled people definitely need to be brought into the delivery and development of anything like that. Sex education also rarely reflects disabled people's reality or contains any mention of disability and sexuality or how those two things can interact. Mainstream sex education is sometimes not all too relevant to people with specific impairments.

I am sorry; as I said, there is a lot here. I will try to do a whistle-stop tour through the questions so my colleagues can come in more robustly. On the Deputy's question on surviving abuse, I have personally spoken to dozens of women who have told us straight out that they are in abusive relationships and that they will stay in them because the alternative is having their children taken away from them, just because they are disabled. It is not because they are unfit parents or anything else but because of the perception, which is still very much embedded in society and therefore in the people who work in our systems, that disabled people are less able to parent.

So many disabled parents in this country live in fear of the State. Instead of feeling like the State has their backs and will support them, they are afraid of coming to the attention of any State service or agency. That is not how it should be and sadly it is common. I have not been able to find information on this in Ireland. I believe we cited an Australian report in our opening statement which shows approximately half of disabled women who reported domestic abuse had their children removed from their custody. This removal was not always permanent but it shows it is a very real and valid fear. I have spoken to women who have had their children taken away from them. I have even spoken to women whose partner has been found guilty in a court of law of abuse and the children have been placed in his care solely because he is not disabled and they are. It is a very real issue that I cannot stress enough. I really welcome this conversation and I hope it can lift the lid on the silence there has been on this issue to date.

Professor Eilion?ir Flynn:

I completely support the points made by Nem and they are very valid. I want to touch on some of the other topics about which there were questions. With regard to legal or legislative barriers to disabled people adopting or fostering, in our view we did not come across any strictly formal legislative barrier in our research on reproductive justice and disability in Ireland. However, in the oral histories that we did with disabled people themselves we did not meet anyone who had successfully adopted. We did meet a number of people who had fostered, including some deaf parents who had fostered deaf children. This was a great placement because the children they were fostering came from an environment where Irish Sign Language was not being used. This was an opportunity for them to live not only in a family setting but with a family that had as its primary language those children's first language also. This was positive to see.

We also met a gay disabled man who had fostered and had experiences of being asked a lot of what he felt were very intrusive questions by social workers during the process to be approved to foster. This included being asked questions about what he would do if the children ran away and he had to chase them in his wheelchair. He was asked how this would work. These are not questions we ask non-disabled prospective foster parents. Assumptions are made that a disability would be a barrier to fostering boys who are very sporty. This is a misunderstanding of the value of disabled people as prospective foster and adoptive parents.

We agree there is a need for parents and children to remain together. If disabled parents need support in their parenting, it should be provided to them in their own homes, their own environment and their own social safety net. We have concerns coming from the many people in our research who had experience of being placed in a parent and child residential placement or an assessment unit. Most of the parents we spoke to who had been in these settings ended up having their children removed from their care subsequently. They definitely felt surveilled in these settings. Given everything that we know and understand now about the experiences in mother and baby homes, I suggest we need to be very careful about how we support disabled parents to ensure we do not re-enter an era of removing people from their natural home environments in supporting their parenting.

Deputy Ellis asked about forced sterilisation. This is something that we did not find any recent evidence of in our research but there were certainly people who were encouraged to be on long-term contraception who, perhaps, did not have adequate access to information about the type of contraception they were taking and what exactly it was for. They really did not feel they had much of a choice in the matter. We certainly had staff members working in various branches of health and social care tell us about historical experiences they had working in services where people were covertly administered what one staff member described as the pill in the porridge. We hope these practices are not ongoing today. We did not have recent examples in the research we conducted but that does not mean these things do not happen in family homes or in other settings.

Deputy Ellis asked about the obstacles to abortion access and reproductive healthcare in general. The obstacles that have been documented for all pregnant people acutely apply to disabled people. The three-day wait is significant, particularly if someone is living in residential care and may not have support from that service, depending on its religious ethos, to access abortion or other kinds of reproductive healthcare. Being able to leave twice and attend two appointments three days apart to access the service could be a real barrier for many people.

Some of the issues have been addressed. We know that since the beginning of the roll-out of abortion access the My Options service has had a phone number to call which is not accessible for members of the deaf community. A webchat function is now up and running. It works well but the problem is that information about individual providers is not available through the webchat function. This is creating a hierarchy of access and who gets what type of information. It is something we would like to see addressed in a different way than how it is being done at present.

This is the tip of the iceberg of some of the issues that people described to us in the research we conducted, to address some of the questions Deputy Ellis has asked. I am happy to follow up and provide more detailed information on any of the points.

Nem Kearns:

We have written submissions on this and we can send them to the committee afterwards.

Michael Moynihan (Cork North West, Fianna Fail)
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We would very much appreciate it.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I welcome the witnesses. I read the statements with interest and I thank the witnesses for taking the time today to come online. It is very important. I have a number of questions that I want to ask. In the 2016 census more than 209,000 women with disabilities stated they had children and 63% of disabled women are mothers compared with 46.9% of non-disabled women. As the committee has heard, there is a lack of support in the national maternity strategy and linkage between maternity community services and disability service providers. I ask the witnesses to discuss this a bit further.

Will the witnesses discuss the impact of the under-reporting of data in Ireland on reproductive rights? Will they also discuss the policy response in Ireland on Article 23, particularly the national disability inclusion strategy?

Professor Eilion?ir Flynn:

The lack of linkages between maternity services and disability services was a very clear finding of our research. We have one very clear example, which we included in our opening statement, of a woman with a physical disability living in a residential service who is a single parent. When she became pregnant and disclosed this to the service she discovered it would not be possible for her to remain living there once the child was born. A litany of problems occurred between the housing side, the disability support side and the parenting support side and made things very difficult for her. She was required to go on the homeless housing list once her child was born. As a result of having to go on the homeless housing list, she had to put her child into voluntary foster care shortly after she was born. Then she had to enter a mother and baby residential placement and undergo a parental capacity assessment. This was done solely for the purpose of guaranteeing her access to housing. She then moved to a family hub before she got suitable accommodation from the local authority, where she is still living today.

Imagine going through all of these hoops simply to find a place to live with your child as a disabled person. None of the systems intersect or speak to each other. The disability support services were trying to support her to get access to the housing list. Even though each organisation or system was doing what it could within its remit, there was no joined-up thinking in how they were able to address the situation. She had to become homeless and go through all of these intensive processes of having her parenting questioned before she was eventually provided with the only thing she actually really needed, which was housing to be sorted.

As Nem alluded to earlier, this indicates the extent to which disabled parents are afraid to ask for the support they may need due to the risk of having children removed from their care. That is clearly a significant issue.

Article 23 can definitely have a more prominent role in the next iteration of the national disability inclusion strategy. I look forward to seeing it and assessing to what extent these things have now been addressed. This will be a key area on which Ireland will be questioned by the UN Committee on the Rights of Persons with Disabilities. Trying to address the issues in the maternity strategy and in Tusla's strategic approach will be key. For example, the child protection and welfare practice handbook from 2018 maintains that parental mental health and parental disability diagnoses are key risk factors. These things are not necessarily key risk factors. If people receive the support they need in their parenting goal, why do we describe these factors as inevitably being a risk that needs to be assessed? We can certainly have more joined-up thinking in service delivery, but it might need to start with strategies. If we can start to develop a more disability-inclusive approach in our maternity strategy, parenting strategies and child protection and support work, we will have a better chance of ensuring disabled parents' rights are respected throughout the process.

Ms Louise Milicevic:

I concur with what Professor Flynn has just said. Certainly, what I discovered from my personal experience is that if you are not in a system and availing of supports, it is almost impossible to get those supports when you embark on pregnancy and parenthood. For example, if you do not have a personal assistant - I did not when I had my first child and still do not - trying to access that support is almost impossible, to the point that I was ultimately told it could not be provided as it did not exist to support disabled parents. It is different if people are already in the system and perhaps have a personal assistant who may be able to support them in their parenting journey, but those who are not in the system will not get the support. Similarly, as time elapses and people and their children get older, if they feel they may need support or could benefit from it and their family life could benefit from it, people are reluctant to seek it because, unfortunately, the call for support seems to be interpreted by services as parents being unable to cope. As we alluded to in our response to the earlier question, people will generally opt not to ask for help. They will struggle along because the fear is that asking for help may result in their children being taken into care.

Nem Kearns:

I agree. I would like to send some information after the meeting as I know the committee is on a tight deadline today.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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It is good to see the witnesses again. I thank them for their submissions, which I read last night and earlier today. To be honest, I found the information in them disturbing. Some of it is horrifying. We definitely need to broaden the conversation about violence against women and we need a much greater emphasis on violence against disabled women. There is not enough knowledge about it. A lot more needs to be done in general and specifically for disabled women. Many of my questions have been answered already in the things the witnesses talked about.

Professor Flynn mentioned a parent in a residential setting who had to move into a residential parenting unit because she became pregnant. What is the difference between this and the mother and baby homes? I am concerned about those kinds of setups and that proper supports were not put in place for this woman to be able to live with her child when it was born. Our family resource centres do wonderful work in our communities supporting vulnerable families, but, like everything, they do it on a shoestring and are not properly resourced. They need to be and, if they were, many more people, such as vulnerable people and single parents, could live in our communities and look after their children and we would not have the imposed removal of children that is happening. I found a lot of things in the reports disturbing. I am glad we are talking about it. It needs to be talked about a lot more and measures need to be taken to address the issues.

One of the matters that has not yet been referred to was highlighted by Disabled Women Ireland in particular, namely, the genuine concern that disabled people in Ireland may face significantly increased rates of obstetric and gynaecological violence. A huge number of disabled women lost their lives giving birth. Has this been incorporated into the maternity strategies? Is it being looked at? Were the witnesses consulted in any detailed way around the national maternity strategy? Is it inclusive of women with disabilities and their needs?

Another issue is that disabled people find it difficult to foster or adopt children. We hear from Tusla all the time that it cannot get people or families to foster children. Adoption is a long, drawn-out and expensive process. I know of people it has taken years to adopt children and they almost gave up. Some issues raised are ridiculous. One man was told he was too heavy and needed to lose weight. If his wife had had the child naturally, there would not have been any restriction on weight. It is silly. The same silly restrictions are being applied in disability which have no bearing on what kind of parent they would be for the child.

Will the witnesses answer the questions on the national maternity strategy and violence against women in maternity settings?

Nem Kearns:

There was an NDA report a few years ago on experiences of maternity services, which was great to see. It looked at choice in maternity and postnatal support and found that disabled women were far less likely to be offered choice and that they did not feel they were treated with equal respect or given equal access to information about their pregnancy and options within it.

I am not aware of any examination or tracking of obstetric violence. I have heard personal anecdotal accounts of it. I am not aware of there being any official monitoring or reporting of it. That does not mean it does not exist, just that I am not aware of it. If it exists, it would be great if that information were available to organisations such as Disabled Women Ireland.

We were not consulted on the national maternity strategy and, to be honest, I have not had a chance to read it in depth. In my scan reading, I did not see a strong focus on the specific needs of disabled people - the fact that there is a significantly higher maternal mortality rate among disabled women and those with pre-existing conditions - or on the other issues identified in the NDA report.

We would very much like to see that being a focus under any national maternity strategy and in the provision of services. We should not just look at the hospital setting but look at the ongoing care for that family in the community.

Another about which my colleagues in the CDLP spoke very eloquently concerns institutionalisation, a mother and baby home-type situation and the dangers of that in an institutional setting. We need to place everything in the broader social context. I know a number of families that were able to cope with the lack of accessible accommodation before having children. However, after having children, they were unable to raise a family in a house or apartment that was completely inaccessible to them. This pressure is forcing people into inappropriate accommodation or potentially more institutionalised or congregated settings when they do not need to be there. There is simply not enough accessible accommodation. We always need to try to avoid siloing and really push on all avenues. We need a higher percentage of accessible housing in all new builds, be that through social housing or in the private market.

Family resource centres do a fantastic job. We had what felt like a very productive conversation with the parenting support unit in the Department in 2021. That could be a very useful avenue to continue exploration with where disabled parents and those with lived experiences are able to come together and have conversations on supports that helped, supports that would have helped had they existed and how those can best be delivered and targeted at families that need them.

Professor Eilion?ir Flynn:

Thinking about the question about why we still have these residential units, as Nem Kearns already covered, too often, disabled parents do not have any suitable accommodation to return to after the birth of their child so they might simply need accommodation and that is why people end there. There are also people, not just disabled people but maybe young parents and other people, who might need more support in terms of their parenting, particularly with a newborn child than they can get wherever they are living. The idea is that you do not just have to leave hospital and be completely on your own. You can have support by being in this setting where staff are on hand to help and support you in learning things as a new parent. Ideally this would not be the case. Ideally people would have a safe and secure home to go to and support would be provided to them in their home. Otherwise you are learning skills in a very artificial setting and are then expected to apply them in a different setting and for some people, that is not a very effective way to learn those new parenting skills. We agree that this is a practice that ideally should not exist and instead we should provide people with the support they need in their natural home environment and make sure they have a safe and secure home in which to parent. Sadly, this is not the case for everyone.

Regarding the barriers in fostering and how this lines up with the challenges that are expressed in finding suitable foster placements or prospective foster parents, Ireland is not unique in facing this dilemma. One of our international colleagues in Iceland had to take a case to its supreme court as a disabled person who wanted to foster and was prevented from taking a mandatory training course for all prospective foster parents. This person is now successfully fostering but one of the things that was said to her during this process was that because she had such a complex physical disability and had personal assistants coming in and out of her home and life, it would be too confusing for a child to understand who is the parent and who is the personal assistant. Freyja Haraldsdóttir is the name of this activist. She has described how her foster son knows very well the difference between her as a parent and her personal assistants because when he is cross with her, he will be rude to her and polite to her personal assistants. Again, children and young people are well able to understand these differences and it is perhaps our prejudices and presumption about what people think about disability that maybe prevents us from having a more open and inclusive attitude to how many amazing foster parents there are, particularly foster parents of disabled children. Disabled foster parents could make amazing foster placements for disabled children. An example is the deaf family that fostered. It was a really positive experience for that family. The mother in that family had grown up in a family where there was no sign language so she really relished the idea of being able to give a child a family home in which their natural language was spoken. It would be amazing to see more of that and I think more people would be willing to do it if they did not experience the pushback in the early stages of the system, which does tend to discourage people from going into these roles.

Ms Emma Burns:

I will add something about the facilitators who have helped people with parenting and their journey through their reproductive lives. Some of what is missing there is the practical skills and information among the people who are supporting disabled people through their journeys. A number of respondents spoke to us about the things that completely changed their lives. It could be as simple as a public health nurse who comes in and is innovative and open-minded and will try to find ways to facilitate that person's needs in early parenthood. It is a lack of knowledge that goes through the healthcare system. Regarding the surprise when a disabled person presents in pregnancy or looking for reproductive assistance in some way, how do we get over that and ensure that disabled people are seen as reproductive citizens the same as everyone else and are extended the same supports or at least to get to the same place? How do we get to this place - by not just creating strategies but embedding skills and knowledge? It is not all down to resources. Much of it is but some of it is also around building in knowledge and strategies in the existing resources.

Eileen Flynn (Independent)
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I am involved in women's rights, including the rights of Traveller women, and women from other ethnic minorities. You see very few women with disabilities involved in the women's movement in Ireland. We want a women's movement and gender equality for women but for which women? Having listened to the witnesses the lack of engagement was really driven home to me. It is not the fault of women with disabilities but that of society, which does not engage with women with disabilities. Many Traveller women are fearful of the likes of Tusla. We fear our children being taken from us. I am a public representative and even I fear Tusla because I was reared that way when it comes to children being put into care. Do women with disabilities get treated with dignity and respect by Tusla?

I do not have questions here in front of me. This is from listening to some of the questions and from listening to our guests speak. Post-natal depression is something that women can experience after they have a child. I want to know whether there should be special supports, not special treatment, put in place for disabled women when it comes to post-natal depression.

On the PA, I have been working with Independent Living Movement Ireland around ensuring every person in the country who needs a PA should have a PA. How do we make that happen for disabled people who want to have children? How do we give that full support for disabled women?

As for refuges for keeping women safe, a lot of the women's refuges are not fit for purpose. This is no fault of the workers in the refuges. I refer to that wraparound support for women, and especially women from the Traveller community. For a woman with a disability who is with a violent domestic partner, does she have equal access to a safe refuge? If not, why not? Are refuges wheelchair accessible? Do they have people in the refuges who are trained to work with people with a disability?

In general, I believe that women with a disability are at the margins of society when it comes to the women's movement in this country. I would like to hear our guests thoughts on that in general.

On maternity hospitals, there are very similar inequalities that should not be accepted today in this country for any woman, no matter her background, ability, disability, etc. It is as if you do not have the brain or the capacity to make your own choices through maternity services. Even two years ago, when I had my daughter, Lacey, and was in here serving, the doctors felt they knew what was best for me. It was a stroke of luck that I stayed in the hospital, because I had her all hours at night and not feeling well. I was told that I was going home the next day, there was nothing wrong with me and that everything was fine with the baby but, because I was a member of the Traveller community, even though I am sitting in here, they did not give - you know - about me. They just saw the Traveller. This is what happens with disabled women as well. How can we change that? How can we change that for women's voices and, while I do not like using the phrase "vulnerable women", especially for women who have less opportunity because of their disability or because of the background they are from?

I thank our guests so much for coming before the committee virtually today to give their opinions.

Ms Louise Milicevic:

I want to touch on Senator Flynn's last point. In terms of the maternity services for disabled women, it very much depends. I am touching on what Ms Burns said as well. One can meet wonderful individuals within the maternity services who will go above and beyond. That was an experience that I had in my first pregnancy, where we had a wonderful physiotherapist who, on her own admission, did not really know how to work with myself and my husband, because we are both disabled, in terms of developing strategies but was willing to work with us so that by the time my daughter was born, we had developed techniques to be able to lift and change, etc.

My experience of maternity services in general was that from the moment you present yourself as a disabled pregnant woman, there is an automatic assumption of incapacity, that you will not be able to manage no matter how much you assure them that you can, and that if you cannot, that you will find the necessary supports. They cannot seem to get pass the fact that you have a physical disability and maybe the use of one limb, you are a wheelchair user, or you are deaf or whatever the case may be. You are starting from the back foot from the get-go and you spend most of your pregnancy nearly trying to convince the maternity service that you will be able to cope. Ironically, what happens then, certainly, with my subsequent pregnancies, is you learn to become a little bit more selective in the information you give because you know that if you are open and honest about the level of support you may need, you will face that attitude of you both being disabled, how you will not be able to manage and how you will need to have full support. Education is key for people who work within maternity services around disability but there is also a need to look at strategies, such as the national maternity strategy. The structures need to change to enable people who provide services and professionals in this area to support parents with disabilities as much as they can.

Michael Moynihan (Cork North West, Fianna Fail)
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I am really sorry but a vote has been called in the Dáil Chamber.

To my mind, this is one of the most important issues because this is really challenging. We all have experience of women and people with disabilities and the real challenges that are here. I ask that one or all of our guests respond to Senator Flynn's questions and we will put it into the public record as well because it is important that we have it.

The vote is going to go on. I think there are three votes now in the Chamber. It is unfortunate and we cannot do anything about it. If that is okay with Senator Flynn, we will get the answers from the witnesses.

Eileen Flynn (Independent)
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I work closely with Nem. It would be brilliant if I could get those answers because it is about having them in the report as recommendations. I thank each and every one of our guests for coming in. This is what is remarkable about this committee. It shows that Traveller women and disabled women, when it comes to inequalities, would have so much in common.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Senator Flynn. My apologies to the witnesses. I thank them very much. I thank the members.

I will adjourn until the private meeting, which we may have a half an hour earlier on Wednesday next. I thank our team for the effort that they put in to try and keep us all on the straight and narrow.

I sincerely thank the witnesses. I will adjourn the meeting. I apologise for it being so hurried but this evening we are a little under pressure. I appreciate their understanding. If anything has not been answered fully, I would appreciate it if the guests could bring them on to us and we will place them on the public record of the meeting. I thank the witnesses and the members.