Joint Committee on Disability Matters debate -
Thursday, 13 Oct 2022

Considering a Rights-Based Approach to Disability in Mental Health: Discussion (Resumed)

Vice Chairman

Apologies have been received from Deputy Moynihan, our Chairperson, and from Senator Seery Kearney. The purpose of the meeting is to resume the committee's discussion about considering a rights-based approach to disability in mental health. On behalf of the committee, I extend a warm welcome to Ms Louise Loughlin, executive director, and Mr. Luke Meany from the National Advocacy Service; to Mr. Joe McGrath, vice chairperson, Munster, from the National Platform of Self Advocates; and to Ms Bernadette Grogan, policy and research manager, and Ms Suzanna Weedle, policy and advocacy co-ordinator, from Mental Health Reform.

Before we begin, I will refer to the note on privilege and some housekeeping matters. Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in respect of identifiable persons or entities, witnesses will be directed to discontinue their remarks. It is imperative they comply with any such direction. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that members must be physically present within the confines of the Leinster House complex to participate in public meetings. In this regard, I ask any members participating through Microsoft Teams that, prior to making their contribution, they confirm they are within the grounds of the Leinster House campus.

I call Ms Loughlin.

Ms Louise Loughlin

I thank the Chair and members of the committee for inviting us here today. I am the national manager of the National Advocacy Service, NAS, for people with disabilities. We provide independent, professional and free advocacy services to adults with disabilities. We ensure their will and preferences are heard in decisions that affect their lives. Last year, we provided more than 3,800 advocacy interventions. Demand for our services has grown dramatically in the past year. Our waiting list figures have increased from 161 people in January to 251 people currently. This increase can be attributed to being under-resourced to manage the increased demand brought onto our service due to Covid-19 related issues and, in more recent times, the impact of the cost-of-living crisis on the people we support. In particular, almost 40% of cases this year have been related to housing issues. We also host the patient advocacy service, which was commissioned by the Department of Health. It provides free, independent and confidential advocacy for people who wish to make complaints about patient safety incidents in HSE-funded public acute hospitals or nursing homes.

Advocacy is vital to disability service provision. Advocacy ensures a person’s will and preferences are heard. It acknowledges the lived experiences of people with disabilities and upholds people’s rights. Mental health is a constant factor in our work. A total of 25% of our cases involved some form of mental health issue in 2021. We project that this will be sustained in 2022. We welcome the reforms to the Mental Health Act , but we would like to underline the importance of completing and implementing those reforms as soon as possible to ensure it fully protects people with mental health issues. We work with many people who have both intellectual disabilities and-or autism, who are inappropriately placed in acute mental health facilities and have no agreed arrangement for support in the community. In these cases, there is often disagreement between HSE mental health services and HSE disability services about whose responsibility it is to provide these supports. We also meet people living in acute units despite being medically fit for discharge because they have nowhere to go. I will give the committee some examples.

Anne - not her real name - was involuntarily detained in an acute mental health unit. She had received treatment and was assessed by her psychiatrist as being able to leave the unit, but she had nowhere to go. She presented at her local authority as homeless. The local authority had no available hostel accommodation or social housing available, so it could only offer vouchers for Anne to access bed and breakfast accommodation. The voucher value was €65 per night but the cheapest accommodation was €85 per night, so therefore, in those circumstances, Anne remained in the acute unit. This is not an unusual example from our casework. We also regularly experience cases where the interaction between community healthcare organisations, CHOs, and mental health services can impact the quality of life and increase rights restrictions placed on people in the community.

Another is example is Bill - again, not his real name. Bill was living at home with his family while waiting for a funded residential placement. Bill has a moderate intellectual disability and mental health issues. He was previously discharged from an acute mental health hospital and was supported by a community mental health team pending other arrangements, including his own residential placement. There was a long history of discussions for residential support but no agreement had been reached between the CHO and mental health community services for funding. The CHO disability side argued he was not disabled enough for its criteria, but the mental health team reassessed him as having a moderate intellectual disability. Bill was unable to cope living at home and his family eventually had to obtain a safety order due to difficulties in supporting him. Unfortunately, Bill breached the order and was arrested and spent time in prison as a result. If Bill had had appropriate support, this situation may not have occurred.

We also work with many people with dual diagnoses who face other issues like addiction or homelessness. Many of these people require additional support to move on from emergency accommodation, yet there is no specific agreement to fund these supports. Many disability service providers state that people in these situations are outside their remit. The criteria for accessing disability services should be expanded, as currently they are frequently cited as a reason not to provide support. We welcomed this committee’s 2023 pre-budget submission on aligning disability funding with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, budget.

We were empowered by the call for adequate funding for our service so we can fulfil our role under the Assisted Decision Making (Capacity) Act 2015 when it comes into force. We welcome the Government's recent amendments to the Act but we believe it can still be strengthened further.

The Act is part of Ireland’s response to meet its obligations on legal capacity within the UNCRPD. Article 12 of the convention states that some people will need support to fully avail of their right to legal capacity. One such support is advocacy. The Decision Support Service, DSS, demand forecast predicts 22,000 people will require some level of decisionmaking support. Some of these people will require independent advocacy. As the Act has not yet commenced, we still do not know what the impact on our service will be, but we know there will be a further increase in demand.

Despite the clear role of advocates in the implementation of this Act, the Assisted Decision Making (Capacity) Act lacks any reference to the role of independent advocacy. We believe the Act should place the provision of advocacy on a statutory footing. The Act should contain a definition of an independent advocate. Without this, other stakeholders who might have a conflict of interest may take on the role of advocate. The definition should focus on the advocate being independent, professional and attached to an organisation. The DSS draft code of conduct for advocates contains a strong definition that could be replicated in the Act. “Independent advocate” should be inserted into the list of recognised interveners under the Act and “independent advocate attached to an organisation” should be included as a person in the list of persons whose views are to be considered by interveners when they are intervening. These additions to the Act should ensure advocates are protected in situations where a decisionmaking representative objects to the involvement of advocacy as no avenue for the advocate to pursue this currently exists other than a complaint to the DSS. Advocates should be given the right to attend court and to access documents, data and other information regarding people they support. This would ensure the voice of the person is central to the process, especially the voice of people with nobody to speak up for them and those with psychosocial and dual diagnoses. These issues are all hugely important to our work and to the people we work with. I thank the members of the committee for their continued commitment to support the work of the committee on psychosocial disabilities.

Mr. Joe McGrath

I am a committee member of the National Platform of Self Advocates, NPSA. The platform is an organisation for people with intellectual disabilities run by people with intellectual disabilities. We work to make sure the rights of people with intellectual disabilities are respected. I thank the committee for inviting me to speak about a rights-based approach to disability in mental health.

People with intellectual disabilities are more likely to experience difficulties with our mental health because of the discrimination we face so this issue is very important to us. The UN Convention on the Rights of Persons with Disabilities, UNCRPD, sets out how to take a rights-based approach to mental health. I will give a few examples of how the Government can do this for people with intellectual disabilities.

We should have the same choice as everyone else about where and with whom we live. The UNCRPD states that we have the right to live independently and be included in our community. The State should support us to do this. Even though the Government promised over ten years ago that it would make this happen, people with intellectual disabilities are still living in group homes where their choices are limited. People might think these smaller homes do not impact on our mental health because they seem a bit better than the big institutions we had before, but simply using a different name for an institution does not change how it feels to live there.

People with intellectual disabilities should have the same access to jobs and training as everyone else. My job helped me with my mental health during the pandemic.

The HSE is developing mental health and intellectual disability teams and it is important these teams be based and offer care in the community. Information about the mental healthcare these teams offer should be available in accessible formats like "easy to read" so people with intellectual disabilities can make choices about what treatment they want and do not want. Teams should talk to people with intellectual disabilities so they can tell them what services they want and need for their mental health.

The Mental Health Act 2001 states that a "mental disorder" includes a "significant intellectual disability". I feel strongly that having an intellectual disability should never be a reason for me or anyone else to be detained and treated against our will. The Committee on the Rights of Persons with Disabilities has said the same thing.

I ask the members of the committee who are working on changing the Mental Health Act to ensure it does not treat people with intellectual disabilities unequally. It also should not allow anyone with a disability to be treated differently for their mental health than they would be for their physical health. If the Government keeps the promises it made when it signed up to the UNCRPD, many issues which impact on the mental health of people with intellectual disabilities will be improved. It will also mean mental health services will be accessible to us. The Government needs to talk to us and take on board what we tell them. A rights-based approach to disability in mental health means respecting and listening to what people with intellectual disabilities have to say and what we need to support and improve our mental health.

Ms Ber Grogan

I would like to say good morning to Mr. McGrath. We missed him in the committee room this morning.

I thank the Chair for inviting Mental Health Reform to the committee today. I am the policy and research manager and I am joined by my colleague, Suzanna Weedle, our policy and advocacy co-ordinator.

At the outset I would like to highlight that online and phone supports are available to anyone who is listening or watching this morning. Sometimes these conversations can be upsetting for people so please reach out for support if needed. A list of supports is available at hse.ie/mentalhealth and information on our member organisations is available on our website mentalhealthreform.ie.

Mental Health Reform, MHR, is Ireland’s leading national coalition on mental health.

With 81 member organisations, we work together for progressive reform of mental health services and supports in Ireland. We do this through research, innovation, policy, advocacy and listening to the experiences of our member organisations who work directly with people with lived experience of psychosocial disabilities, their families, friends, carers and supporters. Mental Health Reform is also a funded member of the Disability Participation and Consultation Network, DPCN. We are delighted to discuss considering a rights-based approach to disability in mental health with the committee. I will use the term "psychosocial disabilities" throughout my opening statement but note that the phrase used in the national mental health policy, Sharing the Vision: A Mental Health Policy for Everyone, is "mental health difficulties". I will highlight three key issues in my opening statement.

I will discuss the rights of people with mental health difficulties first. People who have long-term mental health difficulties have rights under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. The term used by the UN to describe people living with enduring mental health difficulties is “psychosocial disabilities”. This is not a medical diagnosis. It is about the interaction between people with mental health difficulties and their social environment. Psychosocial disability refers to the functional impact or barriers that those living with enduring mental health difficulties experience every day. For example, under the convention people living with psychosocial disabilities should not be discriminated against based on their mental health experiences. This is true also of Ireland’s equality legislation. People may choose not to identify as disabled or with a diagnosis but the fact remains that they have rights.

People with psychosocial disabilities face high levels of stigma and discrimination, have higher costs of living and are at risk of living in consistent poverty. In fact, the Cost of Disability in Ireland report shows that the average cost of having a mental health difficulty amounts to €13,251 per year, which is a significant financial burden to bear.

People with psychosocial disabilities are not a homogenous group and we must always keep individuality and intersectionality in mind. It is important to note that a person with psychosocial disabilities may also be a Traveller, a person with intellectual disability or an LGBTQI+ person. These groups of people already experience marginalisation and stigma and, therefore, the stigma of having a mental health difficulty can be compounded in these instances. That is the reason these groups are listed as priority groups in Sharing the Vision: A Mental Health Policy for Everyone. Priority groups also include people experiencing homelessness, people in prison, ethnic minorities and others. This priority focus must extend beyond policy into tangible action.

As the committee will be well aware, the UNCRPD sets out a series of obligations on states to ensure that persons with psychosocial disabilities have full protection of human rights. Article 4.3 states that disabled people and disabled persons' organisations, DPOs, should be consulted in legal and policy developments relating to their rights. Psychosocial disabilities can be invisible disabilities and, therefore, it is important to inform people they have rights under the UNCRPD, equality legislation and other human rights instruments. It is very welcome that the committee is examining this matter today and raising awareness of this. All of the articles of the UNCRPD extend rights to people with enduring mental health difficulties.

As the committee will be aware, Ireland is one of only three EU member states that has not ratified the optional protocol to the UNCRPD. This is the mechanism that allows disabled people to take complaints to the UN. We respectfully request the committee urgently progress this matter. The State must ratify the optional protocol without delay. The State must also remove its reservations on Articles 12 and 14. This leads me to my final point, the relevant legislative changes in mental health.

The Assisted Decision-Making (Capacity) Act 2015 is finally set to be commenced and implemented from 21 November 2022. This historic and long-awaited legislation is interlinked with the reform of the Mental Health Act 2001. Article 12 of the UNCRPD states that state parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. Article 14.1(b) states that people should not be deprived of their liberty unlawfully or arbitrarily and that the existence of a disability shall in no case justify a deprivation of liberty. Regrettably, Ireland has reservations on both of these articles which means it will not fully realise these rights for people with psychosocial disabilities. People with psychosocial disabilities are the only group of people who are excluded from their rights in this way. We urge the committee to address this discrimination with the Government.

We acknowledge the significant work done by the Minister, Deputy O’Gorman, the Ministers of State, Deputies Butler and Rabbitte, their officials and others on bringing forward the Assisted Decision Making (Capacity) (Amendment) Bill 2022 on involuntary detention but more must be done for full equality to be enshrined in this legislation. The Bill to reform the Mental Health Act must be brought to the Houses by January 2023 at the latest.

In conclusion, Ms Weedle and I look forward to discussing these matters with the committee. The committee is in a unique position to hold the Government to account on its obligations under the UNCRPD. We ask members to ensure that people with psychosocial disabilities are not forgotten in this important task.

Chairman

Before I invite members to put their questions, I ask them when called to identify the person or persons they wish to answer your question. Members should ask questions one at a time, allow sufficient time for individuals to answer and when putting questions adhere to the agenda items scheduled for discussion. The first person on the speaking rota is Senator Seery Kearney for whom I already gave apologies, but I am delighted that she could actually join the committee. She is welcome.

Senator Mary Seery Kearney

I apologise for my change of plans. I felt that this was too important to miss and because I was scheduled to speak first, I decided that I could put aside my personal matter.

My points are mainly for MHR because I want to focus on the Assisted Decision Making (Capacity) (Amendment) Bill 2022, which is currently on Committee Stage in the Seanad. In the context of preparing for Committee Stage, I have had numerous conversations with people with psychosocial disabilities, whether or not they accept that, and I am disturbed by their life experiences. Consequently, I am anxious about the fact that the Bill will further perpetuate the suspension of the advance healthcare directive, AHD, for people who come within that category of disability. When queried, the Minister aligns it to a necessity for reform of the Mental Health Act with it. While that is laudable and much-needed, MHR mentioned a deadline of 2023 and that is the first I have heard of a date being given. Can I clarify in the first instance whether that is the date that MHR is proposing or has it some reason to believe that otherwise? I have not been given any sort of a deadline when I have inquired about it. That is an important feature.

I am aware of the experiences of people with psychosocial disabilities finding themselves in a situation of either voluntary or involuntary detention and suggestions are made to them that in any other context I would consider coercive control where women are reminded of their duties to their children and the potential for a medical practitioner to contact Tusla and raise child protection issues. No matter how harmlessly that is being said, there is no way to experience that other than as a dangerous threat. Such issues are within this sphere and do not get enough attention. I am mindful of the audience listening to this and feel a huge responsibility to be as careful as I can in my choice of words, but we need to expose what is potentially happening.

A number of weeks ago a "Panorama" programme was aired that featured secret filming in the UK. Coincidentally, in the same week the Mental Health Commission issued a statement about restrictive practices that included disturbing figures for the time people spent in isolation with one instance of more than a year. We are not exploring or exposing issues like that. We are not speaking enough about the fact that a psychosocial disability does not remove a person's human rights.

When the Act is commencement, it would be a real risk we have. As it is not stitched in and not embriodered fully into the Act, that could happen. We have been looking for that legislative amendment but unfortunately it has not yet been incorporated. psychosocial disability does not remove one's human rights so I applaud the work, especially by Mental Health Reform, in speaking up. What more can politicians do? I am aware of the time so I will stop speaking there, apologies.

Ms Ber Grogan

We watched Senator Seery Kearney debating with the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, on Committee Stage amendments and I sent an email afterwards to thank her for how strongly she spoke on human rights and about people with psychosocial disabilities. It was very welcome and people with lived experience who we link in with watch these debates and listen in and pay attention to legislation that makes a difference to their lives. It is really appreciated to hear the Senator make those arguments on the floor of the Seanad.

First, regarding January 2023 - that is me throwing out my wishful thinking - we have been waiting for a long time for reform of the Mental Health Act, 2001. The expert group on the review of the Mental Health Act 2001 reported back in 2016 but yesterday the Sub-committee on Mental Health published the pre-legislative scrutiny report into the heads of Bill with 19 recommendations. One of those recommendations is on the Assisted Decision Making (Capacity) Act 2015 and the alignment and linkages between the two. That is really welcome and is something we know the Attorney General is working on at the moment; we also know it is a priority piece for the Minister of State in the Department of Health with responsibility for mental health and older people, Deputy Butler. We are asking really nicely that while this side of Christmas is probably not realistic, the final Bill would be drafted by the Attorney General by January. We could all put that date out there for when priority legislation would be decided on next year.

On the Assisted Decision-Making (Capacity) Act 2015, the Senator is absolutely right. For years since the 2015 Act was enacted Mental Health Reform has been highlighting the discriminatory exclusion of people involuntarily detained under Part 4 of the Mental Health Act and under the Criminal Law (Insanity) Act 2010. We did a human rights analysis on the heads of Bill to reform the Mental Health Act last year. That highlighted again the need for the linkages between the two so that is when we started to write to all of the relevant Ministers. The advanced health care directive is an amendment that relates to health, the assisted decision-making relates to the Department of Children, Equality, Disability, Integration and Youth, and the Mental Health Act was being looked at by the Sub-committee on Mental Health. This is something that we have been asking about and bringing up in different committees; there are a lot of moving parts and we want you guys to talk to each other as we have been asking for the same things from everyone.

The Irish Human Rights and Equality Commission, IHREC, were mentioned in the Senator's speech and it agrees that the exclusion is discriminatory, as do the Mental Health Commission and the decision support service. The Taoiseach, Deputy Micheál Martin, and everyone we have spoken to about it this year agrees the Assisted Decision-Making (Capacity) (Amendment) Bill 2022 is discriminatory. If the only solution is that we have to wait for reform of the Mental Health Act, that is why that needs to happen right now. The longer the delay, the longer the omission so anything that we can do to support your calls we will absolutely do.

On coercive practices, the Mental Health Commission publishes an annual report on the number of restrictive practices. In Sharing the Vision, our national mental health policy, we have an aim to work towards a zero-seclusion, zero-restraint method of practice. It is something that is being looked at more internationally around coercive control and restrictive practices. The exclusion and prohibition of certain practices, particularly for under-18s, is something we would advocate for. Again that is linked to what is happening with the reform of the Mental Health Act so it is really about fitting the jigsaw pieces together and we are really glad the Senator has mentioned them here.

Senator Mary Seery Kearney

In summary, I support the point that reform of the Mental Health Act is beyond urgent.

Ms Ber Grogan

Yes.

Senator Mary Seery Kearney

As a committee and as individual Members of the Oireachtas we need to keep raising this and pressing the point home. I thank Ms Grogan for all of her work. It is fantastic.

Vice Chairman

I thank Senator Seery Kearney.

Deputy Holly Cairns

I thank the witnesses for coming to the committee today, and joining us remotely. The overlaps and intersectionalities of disability and mental health are really complex and impact each individual differently . The insights from the sector and the issues that it and those they represent encounter are really important to help us understand the larger context and its impact on people.

My first questions are for Mr. McGrath. He pointed out that it is important that the HSE's mental health and intellectual disability teams talk to people with intellectual disabilities themselves so they can tell them what services they want for their mental health. Could he tell us more about how the HSE can work with him on this?

Mr. McGrath said the Assisted Decision-Making (Capacity) Act does not do everything that the UN Convention on Rights of Persons with Disabilities, UNCRPD, says it should about recognising the right to make decisions. Could he tell us a bit more about that also?

Mr. Joe McGrath

One needs to be able to link in all of the supports from assisted decision-making to mental health as well because if all of these things are linked up through different Ministers and they are not talking to each other, when we campaign for rights for people with intellectual disabilities we have to go to two or three different Ministers to get our point of view across.

Deputy Holly Cairns

That is ridiculous. My next questions are for the National Advocacy Service. It discussed how the interaction between community health organisations, CHOs, and mental health services increases rights restrictions placed on disabled people in the community and cited the case of 'Bill'. Could they elaborate on that point? We often encounter this issue whereby poor communication and engagements between State services, in this case with the HSE itself, have really negative impacts on individuals and families.

The National Advocacy Service also articulated the importance of giving statutory recognition to the role of independent advocacy in the Assisted Decision-Making (Capacity) Act, to enable such advocates to participate in decision-making and to have the right to access information and ensure the voice of the person affected is protected. To my reading of their statement there is a very real danger that the service it provides could easily be disregarded under the Act.

Ms Louise Loughlin

I will take Deputy Cairns's second question first. The Assisted Decision-Making (Capacity) Act, even with the amending legislation, still does not make any specific legislative provision for advocacy. There is no definition of advocacy in the Act. As I mentioned in my opening statement there is one in the draft code of practice. In effect all the other players involved, individuals themselves as relevant persons, the different tiers of decision-making supporters, as well as recognition of other State players, are all defined and all have clear functions and responsibilities under the Act. There is no reference to advocacy. However when one reads the code of practice and looks at the at the decision support service's, DSS's, own prediction in terms of demand it is quite clear there will be a substantial increase in demand for advocacy services. The specific point we made was that because the only recourse we would then have, should there be an issue about access to advocacy, would be to make a complaint to the DSS, say about the activities of a decision-making representative. They could disregard advocacy services. We have had the experience over a long number of years that many actors who have statutory or regulatory functions can disregard what an advocate is saying because of our non-statutory basis. The importance of that is not about the advocacy service per se. It is important because the advocate is the only independent person providing that support to the individual. The individual may have very strong family support but that does not mean family members are not without their own interests. They may have strong informal advocacy from their service provider, such as the HSE, but there can be a perception of, or a real conflict of interest there. The advocate is the only one, by the nature of how the organisation is established, funded and how the service is provided, that is a truly independent service.

It is a real risk we would have when the Act is commenced. As it is not stitched in and embroidered fully into the Act, that could happen. We have been looking for that legislative amendment but unfortunately it has not yet been incorporated.

On Deputy Cairn's first question about the interaction between State services, it is absolutely true and it has long been our experience of people who have both mental health issues or psychosocial disabilities and another disability type falling between the stools and not being able to access appropriate supports. It is particularly the case for people with intellectual disabilities and mental health issues that there is often a disinterest by the HSE to provide those services. It often comes down to how the HSE's funding is structured. It will have a mental health budget and a disability budget. It is trying to contain that budget and if it sees that another side of the HSE, another division, could provide that funding, that will be the position it would take. It is part of the bigger picture discussed by Ms Grogan in the earlier questions and in her responses to Senator Seery Kearney's questions about the overarching structure and how it is all integrated but also in a very practical way in how services are delivered and how they are operated. It is really critical that we try to get out of those silos and say that one has to look at individuals and packaging for them as opposed to packages out of budgets.

Deputy Holly Cairns

Could I ask one quick question to Mental Health Reform, Chair?

Chairman

Go ahead.

Deputy Holly Cairns

I thank the Chair. It is also on the amendment to the Assisted Decision-Making (Capacity) Act. Ms Grogan mentioned that it will not fully realise the rights of people with psychosocial disabilities in relation to depriving them of their liberty and it is one of the issues we discussed in relation to the amendment Bill this year. She elaborated a bit in response to Senator Seery Kearney. Could she outline Mental Health Reform's key concerns with the Act as it stands?

Ms Ber Grogan

With advanced healthcare directives, one can plan for future healthcare issues, whether physical or mental healthcare. One of the things the Assisted Decision-Making (Capacity) Act will do is make advanced healthcare directives legally binding for everyone whether in terms of physical health or if one is receiving voluntary mental healthcare treatment. People will have sat down with their supports or advocates and made a plan for the type of treatment they want or do not want. For example, people might say electroconvulsive therapy is not something they want or that certain medications do not work for them. Everybody will have their rights and their will and preferences respected unless they are detained under Part 4 of the Mental Health Act or the Criminal Law (Insanity) Act 2010. Every other person will have the right to have their advanced healthcare directives followed in healthcare settings, except people who are involuntarily detained. In the work we have done around it, people are more likely to make advanced planning for their care if they have been through a mental health crisis before. People do not necessarily sit around on a Saturday night thinking what they will do in case something happens next year. People are making informed choices about their treatment and body when they are well. A lot of mental health admissions are readmissions. If we are to be trauma-informed and recovery-oriented in our approach to mental healthcare and to people with intellectual disabilities and psychosocial disabilities, then, as Ms Loughlin said, it is about listening to them and to their voices. At the moment, there is going to be a cohort of people excluded from that right.

Deputy Holly Cairns

I have a final comment. When we were going through the process of the assisted decision-making stuff, it was unacceptable in many ways and it was very rushed. It is very complex legislation that I found difficult to get my head around in such a short period of time. There was no plain English version of the legislation which people could understand more easily. It turned out that all of that rush was for nothing, so it is good to have a further discussion about it. Ms Grogan explained things like the advanced healthcare directive really well. People often make them during times where they might have early symptoms of Alzheimer's disease or dementia and their decisions are respected. In considering that somebody's decisions would not be respected, that example made it easier for me to understand, not to mention the issues around the codes of practice and absence of engagement with disabled persons organisations, DPOs. In terms of all of those things, it is good to have them discussed further today. I thank the Chair.

Deputy Dessie Ellis

I thank everyone for their contributions. My first question is for the National Advocacy Service. It mentioned housing and that something like 40% of the cases it deals with are to do with housing. People living with intellectual disabilities are still living in group homes and so on. They do not have many choices. How does the National Advocacy Service see that rolling out over the next number of years to try to change that, so that people are able to live independently and are included in the community? Article 19 of the UNCRPD outlines that.

In some cases people with intellectual disabilities get jobs but they are not greatly paid, so we need to address that. The committee issued a report, Enhancing Participation of People with Disabilities, recently and a lot of this was included in the report.

Ms Louise Loughlin

Deputy Ellis is correct on housing. Some 40% of our casework involves housing in some shape or fashion. When we talk about housing, we include people living community group homes or who are quite often stuck in group settings, whether mental health settings or a more general hospital ward; people living with family members, even though they want to live independently; and people who are waiting allocation of housing because they may have acquired a disability, so it might be very difficult for them to find appropriate housing, and that can extend to younger people under 65 living in nursing homes, of whom we have a large cohort in Ireland.

An issue that come up for us is that people may be offered social housing but it often does not meet their needs in terms of accessibility in that it has not actually been designed properly. It might be standard local authority-type housing. The cost and the necessity of making it fit for their needs is not always met. With the huge pressure on housing at the moment, that is exacerbated further.

The other piece Deputy Ellis mentioned was the number of people still living in group homes and that is absolutely true. We have a very good Government policy, Transforming Lives, which I think must be ten years old and yet the delivery of that is still very slow. There are still several thousand people living in community group homes and, as the Deputy said, they were not given an option or were not involved in the decision-making as to how they ended up living there in the first instance or whether or not they wish to continue living there. There are huge issues around Ireland's compliance with the UNCRPD around autonomy and decision-making. Even when we have the commencement of the Assisted Decision-Making (Capacity) Act and when we have the reform of the Mental Health Act, it is unlikely that will be addressed because it is about the delivery rather than the legislation itself.

Deputy Ellis also mentioned employment. To secure a job and feel good about getting up and going to work in the morning, one has to feel safe, secure and happy in one's environment. It is very difficult to do that. When one joins the dots between people living in the types of settings we just described or still living in homelessness, being able to secure employment is really challenging. The other thing to note is the levels of discrimination that people still face. A lot of surveys have been done on people's attitudes towards disability and about having someone with a mental health working alongside them. There is still a lot of stigma associated with it.

We have more to do. We have a lot of talk about mental health but it can be a bit fluffy at times in society at large. We talk about mental health but when one really gets down to people with enduring psychosocial mental health conditions and the supports they need, that is where I would like to see the focus. If we really put the structures in place both in terms of policy and legislation but also in how we design services, we would see more people able to take up employment.

Another point is that many people with multiple diagnoses can also end up in addiction because they are not getting the requisite supports. They can often also fall into homelessness. Particularly in Dublin, we know our homelessness services are not designed to support people with those additional issues. They are just not set up for the complexity of having, for example, an intellectual disability, an enduring mental health condition and an addiction issue. They are under too much pressure. There is a lot of work to do.

Deputy Dessie Ellis

I have a question for Mr. McGrath. Article 14 of the CRPD says people should not be detained somewhere like a psychiatric hospital. We have seen it in the past where people have been admitted by their families and otherwise. That is obviously opposed by us all. The Mental Health Act 2001 allows people to be deprived of their liberty and treated without their consent. Does Mr. McGrath think that needs to be reformed? That does not reflect how a rights-based approach should be adopted. Will Mr. McGrath comment on that?

Mr. Joe McGrath

You have to have your mental health under the rights-based approach, because if you are able to work you will not have any problems securing a job, if your mind is working properly. For those who have those issues, they need help so they can get back and contribute to society because they have talents to offer their communities and society as a whole. If everyone else in the able-bodied community can go out and get a job, there are organisations like Enable Ireland and EmployAbility Clare out there to help people; they help not just people with disabilities but people with other difficulties as well. There are organisations out there that can help people to get jobs and get things working right for them and their mental health. It is very important that all of the Departments involved in this legislation and the UNCRPD start talking to each other or European authorities will start fining the Government for not implementing provisions of the capacity legislation. I have been a co-trainer on that capacity legislation for nearly four years now. I am disappointed that very little has moved on since I did it and it is only now that it has gone through the Seanad. We are still debating about people with disabilities. At the end of the day, the Government needs to be more proactive. If something needs fixing it should be fixed. If it is working well, it can be left alone.

Deputy Dessie Ellis

One of the big issues with mental health reform is the whole issue of dual diagnosis. It is something that we are all pushing to see if we can get answers and resources. Does Mental Health Reform see any major changes in this? I have dealt with people who have, for example, Schizoaffective disorder and other people who had serious intellectual disabilities. Is there anything in the pipeline in regard to looking at this? We do not have dedicated people when it comes to dealing with dual diagnosis. We do not have the proper people, psychiatric or otherwise. Does Mental Health Reform see any hope in the future on that?

Ms Ber Grogan

I love the talk of the pipeline. Something we are really good at in Ireland is developing a theoretical pipeline, but we are less good at following through on the plans. Sharing the Vision as a national mental health policy is really good. What we are doing differently this time, to give credit where credit is due, is that there is a national implementation monitoring committee. There are action plans and deadlines. The first implementation plan for 2022-2024 has been published with specific short-term, medium-term and long-term goals. If you were to look at all of the plans, you would say it is absolutely brilliant and that it is going to work really well. Specifically on Sharing the Vision, recommendation Nos. 48, 50, 51 and 57 all relate to mental health and intellectual disability, dual diagnosis and speech and language therapists. The commitments are there, but it is the follow-up that is the issue.

Dual diagnosis is interesting. We did a piece earlier this year around mental health and addiction, such as alcohol and substance addiction. Dual diagnosis is also used if people have a mental health issue and an intellectual disability or a number of different disabilities or health issues affecting them. It comes back to that piece about looking at the person and their scenario, such as whether they are in insecure housing; have grown up in poverty; have an intellectual disability; and are living in poverty. It is similar to what was said about the funding streams - people will not fit nicely and neatly into these boxes. If we start to look at people in terms of the whole person - I see Mr. McGrath smiling, I hope that is a good smile - and all of the social aspects that affect their lives, that will make a difference. There is the national clinical programme around dual diagnosis as well. Anita White in the HSE is doing great work on a model of care for dual diagnosis. There are a lot of good national clinical programmes around early intervention in psychosis, eating disorders and ADHD. There are lots of good things happening in different community health organisation areas and different silos. That is one of the reasons we have been calling for the reappointment of the national lead in mental health in the HSE, so that you have someone who has strategic oversight pulling all of those pieces together.

If I may, Chair, on Article 14, to answer Deputy Ellis, when Ireland ratified the UNCRPD in 2018, we said we would do all of these things, except maybe not Articles 12 or 14 and only relating to people with mental health difficulties. We are either ratifying and implementing the UNCRPD or we are not. It is like Mr. McGrath's point about consulting with people with disabilities, we are either listening to disabled people and their organisations or we are not. It also highlights the importance and need for the fully-funded independent advocacy service. If people do not have anyone or if they are coming up against the notion that, "You have rights, but there is a reservation on that article, so you might not have those rights", where can they go? As was said, people are trying to get by with housing or work and if you have a fully-funded independent advocacy service that is fully resourced, they have somewhere they can go.

Vice Chairman

I call Deputy Canney.

Deputy Seán Canney

Thank you Chair. I thank Senator McGreehan for letting me in. I have tabled a question on the optional protocol ratification, which is due to be taken in five minutes in the Dáil. I do not need any responses back at this stage, but I thank the witnesses.

I have been listening to them all morning. What keeps coming up is that it is about rights. What has also come up is that we have a lot of rules and regulations, but the implementation or the pipeline gets clogged or someone sends it down a different avenue. It all comes down to different sections within the Department of Health, whether mental health, disabilities or others, competing for funding. That is why my colleague, Deputy Verona Murphy, tabled a question in the Dáil. I will be taking that question for her later today. We are asking for a procedure for people who are not receiving services or whose rights are not being vindicated by means of which they can challenge the State to ensure that there is delivery in this regard. I will work with the witnesses to ensure we have a system whereby people are treated equally and their rights are upheld.

I saw the examples Mr. McGrath or someone else gave someone being in a bed and breakfast and another person who could not live at home or whatever. Sadly, until we get the accommodation right, we will still have people in congregated settings and long-term homes where they should not be. At the moment ,1,300 people under 65 years of age are in homes. A major body of work needs to be done, and money will be required to do it. Mental health and disabilities should be removed from the Department of Health and the funding relating to them should also be removed in order that we know exactly what is being allocated. Someone described the current situation as a percentage of the overall budget being allocated. That is all they are, a percentage. We do not know what is in them. The committee has work to do to highlight that issue.

Senator Erin McGreehan

I thank our witnesses for attending. This is a important meeting. Every week, we hold important meetings. However, it is important to discuss this issue and learn about it. I have been learning this morning from listening to the witnesses. Much of this has been misunderstood or permitted to be misunderstood and ignored. People will be prescribed too much medication, sent off in a box or told they are not fit. It is a circle, and people do not get out of it because we are failing to understand or being allowed to pretend that we do not see what is happening. We see constantly that people with disabilities are not given the space to be heard or, exactly as was stated a moment ago, to have what is suitable to them. We are failing to support them across the board. We look at healthcare, housing, education and employment, and then we go back into that circle again whereby we fail to provide support services. People have mental health issues, and how could they not? I am surprised that the figure is only four in ten people who have been sidelined and have mental health issues.

I have a question for MHR. Thankfully, a lot of community and voluntary services are available to support people in the context of mental health services and moving to a social prescribing model. I am a big advocate of social prescribing. It is a fantastic model when it is best suited to the person involved. We are funding many of these groups. MHR provided massive grants last year, which was extremely important. Where is the oversight in respect of these organisations? They are delivering an important service to people who are either vulnerable or potentially vulnerable. Are their results being audited? Are they delivering mental health services? They are calling them mental health services, but are they delivering them in a way that is suitable for the people to whom they are delivering? We need to ensure they are able to signpost, because, as we all know, the social prescribing model is part of a package. It might not be the entire package. Where is the oversight and potential auditing in this regard? The State is spending a lot of money and we need to ensure it is being used properly. That is not to belittle any of the organisations involved. I just want to ensure that they have the arm around their shoulders in order to bring them to where they want to be.

I also have a question for the National Advocacy Service. Local government is a centre point for many things. It is a major cog in the wheel of creating safe and supportive communities. Are local government staff trained, equipped or in any way effectively supported to help individuals with disabilities who come to their offices? Are they equipped to direct people to where they need to go? Is a social worker who might be in a local government office able to do this? Is the separation between the HSE and local government so big that we are losing a lot of people from the system? The HSE delivers housing in some cases, or not as the stories we have heard quite rightly indicate. Local government also provides housing. There is a gap in the middle. Are a lot of people being lost between those two stools?

Ms Ber Grogan

On the governance piece relating to organisations providing services in the community and voluntary sector, if they in receipt of any State funding, whether from the HSE or the Pobal scheme to support national organisations, - many, though not enough, funding streams are available to the community and voluntary sector - strict reporting guidelines must be adhered to. The Charities Act 2009 must also be adhered to. There is a great deal of oversight and governance of any organisation in receipt of State funding.

MHR distributed the smaller grants. We had a robust process in that regard. Our 81 member organisations include large entities such as the Samaritans, the Irish Society for the Prevention of Cruelty to Children, Barnardos and Pieta House, as well as smaller local organisations such as the Finglas Addiction Support Team. All of these organisations have their own boards and governance structures. That is not a concern.

The community and voluntary sector fills many of the spaces in which the State does not or cannot provide direct services. A report was done by our innovation team called Brave New Connections, which I can send to the Senator later if she likes. It showed how overnight, when the Covid happened, many groups like Jigsaw and My Mind had to switch to an online service delivery model and that the demand for helplines in particular increased dramatically. Both what we have seen and what we have heard from our members is that there is demand for services. Some of their services have had to be redirected to the crisis front-line helplines.

I understand what the Senator says about funding. The recommended amount internationally is that approximately 10% to 12% of the overall health budget should be spent on mental health. Even though the Minister of State with responsibility for mental health and older people, Deputy Butler, managed to secure an additional €72.8 million this year, which is a record amount of investment and which brought us up to an investment of more than €1.2 billion in mental health, it still only equates to 5.1% of the overall health budget. We are far behind when we look at specific mental health budgets.

On the other community supports, some of the things we mentioned that are positive are initiative such as that relating to the community cafés. There have also been pilots of well-being cafés and recovery colleges.

I am conscious that I have been speaking a lot. I will hand over to my colleague, Ms Weedle.

Ms Suzanna Weedle

On the point about four in ten people, that particular study was done by Maynooth University. It was a nationally representative study. It is important to bear in mind that it only monitored 12 conditions, to use the term that was used in the study. That is 12 particular conditions. It is very likely that it is a much wider. One has to bear in mind that in any study, it is about the people who cannot participate in the study. Who is not being reached? I refer to the digital divide and those who cannot access these kinds of things. It is possible that the rates are much higher but that is the most recent nationally representative study that is available.

Regarding delivering the correct supports to the cohort that is appropriate, I know a lot of our members have particular thresholds for what is appropriate for their service and when they need to refer on. For example, Jigsaw operates a referral pathway where it will support people if they need to go on to access child and adolescent mental health services, CAMHS. If they need to go back to their GP, they will support them in writing a referral letter. The Jigsaw offices are much more approachable, friendly and warm environments that are far less daunting than going directly to clinical environments. It would support them in that way. People will not be turned away. Even if Jigsaw cannot meet their needs, it will support them through a referral pathway. The issue that some people face is that sometimes they are not necessarily being given that direct access to CAMHS and it is piecemeal. That is a challenge in that area.

It is really important to recognise the lack of employment supports for mental health difficulties. If we consider the reasonable accommodation fund, which is designed specifically to support people with disabilities in a work environment, there are zero provisions in that for mental health. We have flagged that. We did a submission back in May 2019, which is on our website, on the lack of supports for mental health in the workplace and what can be put in place. Some €1 million is being allocated to reasonable accommodation fund in this year's budget and we would hope that some of that is directed towards mental health supports in the workplace.

On the individual placement and support, IPS, model and service, we have 40 IPS workers who support people with psychosocial disabilities to secure and, very importantly, sustain work. They do not simply withdraw supports once the person is in place. They are integrated into clinical teams. We have received fantastic feedback on how successful this programme has been. The concern is that it is not nationally available. It is a postcode lottery. You might have an IPS worker on your mental health team and have that support with work but it is geographically based. We have 40 IPS workers but nationally we have 112 general adult mental health teams, to put that into perspective. We do not know yet whether there will be any funding allocated to that from the mental health budget but we would hope that will be progressed as well.

The term "dual diagnosis" can be confusing because it can be used in two ways - one with mental health and intellectual disability and one with addiction and mental health. On the mental health and disability teams, back in 2002, the National Disability Authority flagged what Ms Loughlin talked about, that is, this difficulty of access as to whether you belong with disability services or with mental health services. What is happening is that people are being thrown back and forward.

The other thing that is quite difficult with intellectual disability is that there is a lot of overshadowing, of attributing distress to somebody's disability when it is mental health related and they are not getting the adequate supports for that. In order to address that, chapter 14 of A Vision for Change in 2006 referred to mental health intellectual disability teams. What was advised and recommended was to have two teams per 300,000 of the population. At the time, that would have equated to 29 teams. If you look at our population now, we should have 32 teams nationally. We have 12 partial teams. There is a model of care for this. The HSE released a model of care in 2020 around these teams. We made a submission to the review of a Vision for Change, which we sent to this committee, with a specific section on intellectual disability and mental health and the needs around these teams. Sharing the Vision carries forward the recognition of that gap and the fact this needs to be addressed. There are 12 partial teams and what we have heard in our engagements with people who work directly with people with intellectual disability and mental health or their families and supporters is that a place could be deemed to have a team, which might be not fully staffed. There might be one psychiatrist, which is not, by any stretch of the imagination, a multidisciplinary team or there might be a team in place but it is inaccessible. We would like to see more clarity around the mental health and intellectual disability teams, where we are at with the staffing of them and where we are at with progressing that to become nationally available.

One other point was around the seclusion and restraint issue. There are huge concerns in mental health services around seclusion and restraint and we are grateful to the Mental Health Commission for having such fantastic oversight of that. However, it is important to recognise that there is no guidance on seclusion and restraint in education settings. They are currently working on guidelines. The process beginning in 2019. We still do not have guidelines formalised.

It is also important to look at what is going on in Northern Ireland around this at the moment in a campaign called Harry's Law. This is a campaign run by a mother from County Tyrone as a result of her experiences of having her son restrained in school. What they are trying to do in Northern Ireland is to have this legislation enshrined in law. What we are working on are guidelines, which are really important and should be progressed, but these are not enshrined in law. There is currently no requirement to report and from what we have heard this disproportionately affects people with disabilities in schools.

Ms Louise Loughlin

To go back to the question on local government and, in particular, whether local authority staff are equipped, trained and supported to provide the requisite services to people with disabilities, I cannot really answer that. They would really need to be asked. We would know of pockets of good practice but our experience would be that it depends on individuals. That is something that local authorities themselves would need to answer. They are under so much pressure in terms of the demand for housing at the moment and our experience would be that the issues around the accessibility of housing that is appropriate for people with disabilities is really problematic. That is an issue of supply. Obviously, I know the whole policy around housing is to increase supply both in the private sector and in the public and social housing sector. I know the Minister has made a number of commitments around universal design of new homes. This is really fantastic and should have been done a long time ago. However, that is going to take time to come on stream. It is this coming on stream of the housing which is the major issue. It is exacerbated if you are living in housing where you cannot get upstairs to your bathroom. The conditions some people are living in are absolutely appalling. That can lead to spirals of further decline in terms of your disability and your mental health.

I cannot answer the question about whether those staff are equipped. More could be done but I would say they are probably under huge pressure with regard to that.

On the separation between the HSE and local authorities, I know from my experience in Scotland that they have moved over to social care partnerships, between health and social care partnerships, and there is a history there of combining those services. If you live in a local authority area, your occupational therapy and speech and language services are all delivered through the local authority. There is probably a question mark over how successful that is in terms of stitching that in with an overall package. It is a relatively new in that they have stitched it all together. I am speaking from my own experience here. There are models there that could be considered. There are definitely issues with the complete separation of health from housing. If you are not living in good quality accommodation, your health is going to suffer, whatever your personal circumstances are. There is definitely something to be done there.

On that overall piece about stitching it together, there is a national housing strategy there and it includes an increased role for tenancy sustainment officers. I am not sure about the implementation of that. Again, that would be something that would be really welcome. If there was a link between a tenancy sustainment officer and what was going on with someone's healthcare package or their disability support package in a proper multidisciplinary manner, which included the person at the centre of that and directing it, we probably would get a lot further, more quickly. Sometimes these things sound a bit highfalutin or things we will never be able to do but we must remember those types of services are actually a lot cheaper to deliver than it is to have people living in campus-style or congregated settings or stuck in an acute hospital or an acute mental health facility. Someone who is having an acute mental health crisis might really need access to that facility.

Someone may be well enough to go home but cannot do so because there is nothing there for them. We have to step back and look at it more coherently and structure it in a better way. There is a lot of good stuff there. The policies are there. In Ireland, it is always the implementation.

Senator Erin McGreehan

I thank Ms Loughlin.

Vice Chairman

I thank Senator McGreehan. If any members would like to come back in with a further comment or question they can indicate to me. I would like to ask Mr. McGrath a question. He mentioned that mental health can be supported besides the medical model that is being led by psychiatrists and that other supports are available. Can he discuss what other supports are available in the local community?

Mr. Joe McGrath

There are counselling services in communities that people could access if they know who in the community is providing counselling services. We could ask our GP if there is something in our community that we could access, because it is important not to be going to the GP and that if we need a counselling service, we could go directly to the counselling service. A lot of people would not go to the GP clogging up his or her surgery when there are counselling services in the community. There are lots of different counsellors one could go to. There are different organisations out there. There are lots of them in the community if they are identified for people with intellectual disabilities. If people in the community open their mouths, they might get something in the community rather than having to go onto the HSE website to look to see what is in our locality all the time. Some of us do not have Internet connections in our houses and some of my members might not even have telephones. They may not have been able to afford to put the Internet or technology into their houses in order that they can access stuff in the community. It is very hard to ask your neighbours all the time if there is anyone they could recommend to you to have a chat with if you needed to.

Vice Chairman

Therefore, communication is an issue. It is about making sure people are aware of what services are available and that they are free or affordable. That would also be important. I know Save Our Sons & Daughters, SOSAD, for example, does some brilliant work in my community offering counselling services to people. The family resource centres also offer counselling but they are inundated with people and the HSE refers people to them, which is ridiculous in this day and age.

Staying on the over-prescription model, it is something I hear a lot about. I hear it from parents of children who are attending child and adolescent mental health services, CAMHS, and there have been different scandals around CAMHS and what is happening in the different teams. It is continuing into adult treatment as well. There is also a huge issue with parents of autistic children who are with the children's disability network teams but have developed a mental health issue, often because of the lack of supports within the community. Then CAMHS is refusing to address their issue because they are autistic. When I say that to somebody in CAMHS, they say they are not getting support from the children's disability network teams, CDNTs, and the CDNTs say that CAMHS is refusing point blank to deal with the children. We need a lot more collaboration between different organisations. As was noted, many people are falling between two stools where they are supposed to be pigeon-boxed into one or the other and then they are saying that they do not fit the criteria for mental health or they do not fit the criteria for disability, where they actually have both issues.

I am concerned about the over-reliance on prescription, both in the community and in residential settings, and about the continued use of detention orders in certain cases and even wards of court. When we are coming up to the implementation of the Assisted Decision-Making (Capacity) Act that should not be continuing in this day and age. Witnesses talked about how investment is needed but we also need to look at an overhaul of services and how they are delivered because over the years, we have had an over-reliance on disabled people, especially those with intellectual disabilities or those with mental health issues being institutionalised, locked away and forgotten about and in many cases mistreated. Thankfully we are a long way from that but we still have an awfully long way to go. Do our guests have any comments to make on medication or the over-reliance on it?

Ms Louise Loughlin

I would see the medication piece as part of the overarching continued unregulated detention. That is how I think of it and those are my own words, not a recognised term. Whether it is a younger person under 65 living in a nursing home because he or she has an acquired disability or a person with an intellectual disability who was placed by his or her family in a large campus-style setting, maybe decades ago at this point, we still have an excessive number of people living like that. Even then, some people may have been supported to move to live more independently but that model is still not really there because it could actually just be another group home albeit in a slightly different setting. When we talk about that, to me they are all still variations of deprivation of liberty because the person has not really meaningfully consented to living there. I refer to someone who is under 65 and in a nursing home. We have many cases and we made a big contribution to the Ombudsman's report, Wasted Lives:Time for a better future for younger people in Nursing Homes. We had provided advocacy to many of the people featured in that report and we had to escalate them to the Office of the Ombudsman because we had no other avenue to support them. You are talking about people who were literally breaking down crying out for help and still could not get out. They are deprived of their liberty. They were not choosing to live there.

There is still an over-reliance on medication, pro re nata, PRN prescribing in residential settings. It still goes on and I know there has been some activity on it in recent years but it is still there and it still happens. Until we get to a point where people are actually living lives of their own choosing, that is something that will still happen because it is done in response to what is described as challenging behaviour. That is actually just a person in extreme distress who is not being listened to and whose rights are not being supported and they end up, like we would all do if in that situation, acting out their distress and that can be the response to that. It is not in all cases and there is movement on it and that is great. However it is important to call out bad practice as well. It still exists. We still come across those types of situations.

We have also had situations quite recently of younger people on the autism spectrum who are out of child and adolescent services and are now in adult services but cannot get the appropriate supports. They have ended up in an acute mental health setting and they cannot get out because they cannot access the supports. I am talking about people at the start of their lives who are having those experiences. There is not necessarily a mental health condition there at all but it is because they have autism and because of how it has manifested itself. We have supported them to get out and their families have had to be really active in supporting them to access supports. Where that often ends up is that the HSE would have an emergency placement fund at the start of the year which they have tried to cap in recent years. I have been involved in some work with the HSE to try to move away from that model but it is really slow work to get away from a dependence on emergency placements. When they use up those emergency placements, that money is taken away from the delivery of another service. The reason people end up in emergency placements, and it can often be autism-related, is because they have ended up in such a situation that they have had to be placed in really dire and very expensive emergency-type placements.

Vice Chairman

I thank Ms Loughlin.

Ms Suzanna Weedle

Mr. McGrath raised a really important point on equality of access to counselling and psychotherapy and more generally, there are difficulties with funding and access to talk therapies in mental health care. There is an organisation called Disability Psychotherapy Ireland which is a very small organisation, an interest group of psychotherapists who provide psychotherapy services to people with a disability. For anybody listening or counsellors or people providing those free services, if they are interested in supervision in that area they do provide those supports. That is important because as Mr. McGrath said one needs to know that a service is accessible and that they are able to provide the accommodations one might need to access therapy and that it will be a welcoming and safe environment to go into. I wanted to say that organisation is there. In terms of autism and CAMHS what we have heard is that because CAMHS is so under-resourced, it has massive waiting lists and that there can be, understandably, a defence of the resources it does have because it is trying to meet the need. That comes back to the drastic underfunding of services, particularly in CAMHS.

There is a defence of expanding the remit when they cannot meet needs at the moment based on the resources they have been given, for the waiting lists they have.

Deputy Dessie Ellis

I want to ask the advocacy groups what their view is on supported housing. For example, we have Housing Association for Integrated Living, HAIL, housing, for people with mental health issues, etc. Do the groups feed into that? Do they have an input? Have we got the right approach? There are very few housing bodies, in fact, I think HAIL is about the only one in this country doing it, and it is very limited. What is the opinion on that? How do the groups deal with and engage with people in prison? Is there an arrangement with the Prison Service? Is there an open door to go in there and deal directly with people, if you need to? I am curious about that.

Ms Louise Loughlin

On the approved housing bodies, there are a small number that provide those specific services and we work well with them. It is not without issues but it is a far more successful model than the traditional one-size-fits-all local authority-type housing. In Ireland we also have quite a bit of practice of disability service providers still being actively involved in the provision of housing. There was an example in the news last week of a mother who ended up transferring the title of her house over to a disability service provider in order to secure the provision of that home for her adult son with an intellectual disability following her own passing. They were happy that was the right solution for them as a family, which is fantastic, but it also speaks to the issues we have in that it was a family home and somehow or other it has ended up being transferred to a disability service provider. That might be okay in a one-off situation but it probably points to a bigger issue about ensuring we have an adequate supply of housing for people with disabilities that meets their own needs. One thing we have also come across on the housing piece is that sometimes when people are offered either housing from the local authority or when they are stepping down, to use that term, from a large institution, it can be very far away from their home place. It could be an out-of-county placement. That is quite acute in County Dublin and it goes out beyond there, so people who might have a work placement or a whole community or a day service they attend, but what they are being offered is housing. It is unsustainable for them. We would not ask anyone else to live so far away from their home supports. That is part of the bigger picture of the housing crisis we are in. There is more to be done under the national housing strategy in terms of enhancing the role of those approved housing bodies with those specific remits. They can deliver more bespoke services for people with their own particular needs.

On prisons, there is no open door per se to advocacy. Our role with regard to prisons is more when people come out. Another perennial problem is prisoners leaving prisons and not being able to access the appropriate supports, particularly around housing. We often see people going through the criminal justice process and support them to help them understand the advocacy process. That can be a person appearing as a witness or an accused person, particularly in the complex situation of someone with multiple health disability-type issues as it can be really challenging for them to understand what is going on. The legal profession and the courts are not necessarily equipped to provide those supports so that is another area we provide.

Another area of our work is with parents with disabilities, particularly intellectual disabilities, and their interactions with the State in terms of housing. I think Senator Seery-Kearney mentioned this morning, for example, when they are in acute mental health settings and perhaps having interactions with TUSLA. About 15% of our work is supporting parents with disabilities who are going through childcare processes under the Child Care Act 1991. This can often involve care orders brought by TUSLA seeking to bring a child into care. That is a whole other session that I would urge the committee to have a look at. It is an area of massive complexity. These things are all interlinked. If you do not have the right housing or supports around you, you are more likely to struggle with your parenting. Many of the people who come into that system are people who might have gone to mainstream school or people with quite a mild intellectual disability who have been quite successful in their own terms. They have gone to mainstream school and may have secured employment and housing but when they become parents, that is when they start to struggle with their parenting skills perhaps because they have not been adequately supported. Everything then starts to crumble around them. I know that is not exactly on-topic this morning, but these matters are interconnected. There is more work to be done on prisoners and there is definitely a role for advocacy for prisoners in terms of getting ready for life outside of prison, how they are accessing supports, their interactions, maintaining family relationships and all of those things..

Ms Ber Grogan

HAIL housing is one of our members. They do great work. Before our pre-budget submission launch we had a public survey and we also went out to our member organisations to get feedback from them. Martine Ferland, the CEO of HAIL, said to us that a challenge HAIL encounters is the ongoing under-funding of tenancy sustainment support services for people with mental health difficulties. Government funding has not increased in over seven years for tenancy support services and the funding currently does not match the full staff and management costs. The discussion around tenancy sustainment and approved housing bodies links in with what we are talking about. Some people have families, supporters, carers and communities around them, but what about people who do not? A person's network could be the tenancy sustainment officer or supported housing like in HAIL; the people who are going to link you up with other advocacy services or talk to you about the decision support service and your rights. We always have to come back and remember the voices that are not at the table as well, who are not getting the information and do not have those wider support networks around them.

The prison piece we are working on was given ethical approval in 2019 and then this little thing called Covid-19 happened. It put a bit of a stop to things. It is a mapping of the mental health services in prisons across the country for which we already have the HSE funding. Recently, we were waiting for the justice report from the high level task force, which looked at mental health and addiction in prisons. We have restarted those conversations with the Prison Service. Everyone agrees it is something that needs to be looked at in more detail. If you have a quick glance at the literature, you know that people with mental health difficulties and intellectual disabilities - those marginalised groups - are overrepresented in prison populations. It is something we are looking at and we are glad to see that there is an appetite to find out what the research is behind it and to try to get some evidence-based pieces. That is coming down the line. We have found with the director of the Prison Service that there is definitely an appetite for the research to take place, so I hope that goes ahead unhindered.

Vice Chairman

I think that is all of our speakers for today. I thank everyone for coming in. The committee's job and responsibility are to oversee the implementation of the UNCRPD across all Departments and we continue to do that and try to hold the Government and Ministers to account. It is an ongoing battle but we will continue to do it. We would not be able to do it without insight from disabled people, the DPO Network and representative organisations like yourselves coming in and informing us and giving your insights. The witnesses spoke about people in prison. Many people in prison have either intellectual disabilities or mental health issues. That was brought to our attention before. I always make the argument that if resources were put into vulnerable families and into supporting children in the community from day one - these families can be easily be identified because there is often generational poverty - it would be much more beneficial, even from a cost-effective point of view. It would have a huge societal benefit as well, rather than people ending up in prison. The same point stands for people not getting the support they need if they have a disability or a mental health issue.

I want to commend the amount of work that is being done in advocating for people and supporting people with mental health issues and disabilities. I thank all the witnesses for coming here today, including Mr. McGrath, Ms Grogan, Ms Weedle, Ms Loughlin and Mr. Meany.

Ms Suzanna Weedle

Could I make one more small point?

Vice Chairman

Yes, absolutely.

Ms Suzanna Weedle

We are on the disability participation and consultation network and we are in the different disability forums. Obviously, we are not a disabled person's organisation. As far as we know, there is no disabled person's organisation, DPO, specifically around mental health difficulties. We know there are people with lived experience and living experience and who are experts by experience. I mention that link in with the HSE's mental health engagement and recovery office. It is a space where we are very conscious of the idea of nothing about us without us. We do not want to be seen to be speaking on behalf of anyone. We want to find that balance of how we amplify voices. The website, mentalhealthreform.ie, is there for people to contact us.

The work of this committee is so important and so integral to the implementation of the UN Convention on the Rights of People with Disabilities, UNCRPD. It is amazing that we ask DPOs and disabled people to take part in consultations but we also need to be cognisant that many of them are working so they might be volunteering in their DPOs. It is about how we make things more accessible, for example, by having evening consultations. With the disability participation and consultation network, we have meetings monthly on a Thursday from 5.30 p.m. to 7 p.m., so that people in DPOs can attend. This is my job and I am paid to be there, but we always have to be cognisant that if a person is already working or volunteering, we have to make things accessible because we want to hear from disabled people.

As part of our work with the disability participation and consultation network, we are doing a consultation piece on how best to engage with people with psychosocial disabilities. I refer to things like being online and not wanting your camera on or not wanting to share your full name. We are hoping that by the end of this year, we will have this piece completed which we will happily send it to the committee to inform its work.

In the meantime, we will mention the UNCRPD and the optional protocol to all the other committees as well as ask them to please talk to the DPOs and to the Joint Committee on Disability Matters. We try to send them the committee's way, so I thank it for all its work.

Chairman

I thank the witnesses for their engagement. It has been very informative.

The joint committee adjourned at 11.13 a.m. until 9.30 a.m. on Thursday, 20 October 2022.