Oireachtas Joint and Select Committees
Wednesday, 15 July 2026
Joint Oireachtas Committee on Disability Matters
Ageing Complexity and Health Needs of People with Intellectual Disabilities: Discussion
2:00 am
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Apologies have been received from Senator Bradley.
The purpose of today's meeting is to discuss ageing complexity and the health needs of people with intellectual disabilities. On behalf of the committee, I extend a warm welcome to Professor Mary McCarron, professor of ageing and intellectual disability and director of the Trinity Centre for Ageing and the Life Course in Intellectual Disability, and Dr. Martin McMahon, associate professor in intellectual disability nursing and the centre's associate director.
Before we begin, I will read a note on privilege and housekeeping matters, as I always do. 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 her, him or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of that person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction. The evidence of witnesses who are physically present or give evidence from within the parliamentary precincts is protected, pursuant to both the Constitution and statute, by absolute privilege.
I remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex.
I call Dr. McMahon to make the opening statement. He has five minutes.
Dr. Martin McMahon:
I thank members for the invitation to attend today’s meeting of the Oireachtas Joint Committee on Disability Matters to discuss ageing complexity and the health needs of people with intellectual disabilities. I am pleased to speak to the committee about evidence from the intellectual disability supplement to the Irish longitudinal study on ageing, IDS-TILDA. IDS-TILDA examines ageing among adults with an intellectual disability aged 40 years and above in Ireland. Since 2008, it has provided a unique national evidence base on how people with intellectual disabilities age, how their lives are changing and where health and social care systems need to respond more effectively.
The key message I wish to bring to the committee is that people with intellectual disabilities are living longer and, often, are enjoying aspects of their older years. However, many are also experiencing ageing, frailty, exclusion and complex health needs much earlier than the general population. These difficulties are not inevitable consequences of disability. Many reflect barriers in access, prevention, early diagnosis, treatment, rehabilitation, community participation and long-term planning.
IDS-TILDA shows progress. Many older adults with intellectual disabilities are socially connected, have close relationships with family and friends and are active in their communities. However, the evidence from five waves of IDS-TILDA also shows that many remain at risk of exclusion from the ordinary things in life that matter the most and people expect, such as education, employment, transport, technology, social participation and meaningful community involvement. Addressing this will require education and incentives for ageing-focused and other community resources to better include people with intellectual disabilities as they age.
Community living matters. Evidence from IDS-TILDA shows that people living in community settings have better outcomes than those in non-community settings, even when comparing people with similar levels of support need. Community living must be more than a change of address, however. It must be supported by increases in the availability of accessible housing, more available and reliable transport, more ageing-prepared staffing and skill mix, collaborations between intellectual disability and ageing service providers to ensure health and community services are inclusive, and opportunities to take part in life beyond Monday-to-Friday service hours.
Family care is increasing as we divert individuals from formal care. It is also becoming increasingly complex. In the IDS-TILDA family carers study, just over one half of respondents were parent carers, all of whom were aged over 66. Some were over 86 years of age. As parents age or die, care often transfers to siblings, many of whom are themselves older adults. Approximately one third of carers reported financial struggles. Carers were predominantly women, and many had limited help and low satisfaction with access to respite. Family care is, therefore, a long-term and, often, unsupported part of the system requiring greater State planning and support. As we depend more on families and encourage independent living in current and upcoming generations of people with intellectual disabilities, there is a need for sustained and dedicated supports for people continuing to live where they have always lived and to sustain family caring, where desired.
Additionally, there is a need to develop innovative models of care that support people to age and live with dignity where existing care settings are no longer able to provide safe, appropriate and comfortable care.
The healthcare evidence is equally clear. Adults with intellectual disabilities experience frailty at much younger ages. IDS-TILDA data shows that adults aged between 50 and 64 can have frailty levels comparable to people aged over 75 in the general population. They are also eight times more likely to transition from a non-frail to a frail state. Musculoskeletal health is another major concern. IDS-TILDA shows that more than 32% of adults with intellectual disabilities were objectively identified within the osteoporotic range and a further 29% within the osteopenic range, yet only 19% reported a formal doctor’s diagnosis. Over 60% had not received a dual-energy X-ray absorptiometry, DEXA, screening. This under-recognition has important consequences. Adults with intellectual disabilities experience substantially higher rates of falls and fractures than the general population, with around one in seven reporting a fragility fracture and falls occurring at rates typically seen decades later in the general population.
Mobility is central to independence and inclusion. IDS-TILDA evidence shows that over 45% of participants reported difficulty walking 100 yd and nearly 32% had difficulty walking across a room.
Approximately 80% did not meet WHO-recommended activity levels. Public education, accessible activity sites and exercise programs adapted for people with intellectual disabilities are all needed.
Medication use also requires urgent attention. IDS-TILDA has identified continuing high use of psychotropic medication, including anti-psychotic medication. There have been some positive trends, including lower use among younger adults recruited in 2020 compared with those of the same age recruited in 2010. However, current policy focuses too much on medicines management and not enough on medicines optimisation. People need regular comprehensive medication reviews, appropriate de-prescribing where safe, and greater access to non-pharmacological supports, such as psychology, occupational therapy, social work, speech and language therapy and behavioural supports.
Dementia represents one of the greatest health challenges for an ageing population of people with intellectual disabilities. People with Down's syndrome are at particularly high risk of developing Alzheimer's disease decades earlier than the general population. Research from IDS-TILDA has directly informed the development of Ireland's national intellectual disability memory service, ensuring that people with intellectual disabilities have access to equitable, evidence-based dementia diagnosis and post-diagnostic support. There must be investment in making such access available across the country as well as in brain health initiatives, person-centred post-diagnostic care, necessary environmental modifications and care packages.
Oral health is one of the clearest examples of health inequity. IDS-TILDA shows higher rates of tooth loss and untreated dental disease among people with intellectual disabilities. People are more likely to lose all their teeth, and tooth loss is associated with wider health risks, including nutrition, communication, dignity and infection risk. Specialist care and incentives for inclusion in the widest therapeutic options are necessary.
Women with intellectual disabilities also need much stronger policy attention. IDS-TILDA data has shown they experience poorer health across physical, behavioural, mental, sexual and reproductive health domains. Menopause may occur earlier, yet many women receive little accessible information and may be unprepared for this transition. More specific attention to their health needs and the needs of the health sector is needed, along with specialist support from and training for health professionals.
Cancer is another significant area of concern. Across IDS-TILDA, cancer is not frequently diagnosed, yet it is one of the leading causes of death recorded on death certificates. This raises serious questions about under-recognition, late diagnosis, barriers to screening, unequal access to cancer services and limited survivorship supports. Targeted programmes for cancer prevention, identification and treatment are needed.
Despite, or perhaps because of, the challenges, this is a timely moment, as Ireland holds the Presidency of the Council of the European Union, to place the ageing, health and inclusion of people with intellectual disabilities firmly within national and European policy priorities. First, we need disability-appropriate prevention, screening and early intervention across the life course. Second, mainstream health services must become genuinely accessible. Third, family carers need planned, reliable and funded in-home supports, including respite and future care planning, before crisis occurs. Fourth, community living must be backed by inclusive services that promote and maintain health, housing, transport, staffing, digital inclusion, education, employment and social participation.
To achieve Ireland's goals for improvement and to measure progress effectively, continued investment in IDS-TILDA is essential. This should include enrolling participants from a much younger age and developing inclusive data systems that capture experiences across the life course. Without data, people with intellectual disabilities remain invisible in policy and in the delivery of interventions designed to improve health, quality of life and participation. With data, we can identify inequities, track whether policy is working and design services that support people to age with dignity, safety, health and full participation in their communities. I thank the committee and look forward to members' questions.
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I thank Dr. McMahon. We will publish the opening statement to the committee's website. Is that agreed? Agreed. We will move to questions from committee members. All members will have seven minutes and, as they know, this includes their questions and the answers. There is a rota in place.
Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source
Professor McCarron and Dr. McMahon are very welcome. I thank them for their opening statement and the overall work that IDS-TILDA does and has done over the past 20 or more years. It is invaluable to the healthcare sector. I also thank the secretariat for the briefing notes.
I have quite a few questions. Perhaps I will list them off. I am looking for an expansion of what was covered in the opening statement. Dr. McMahon mentioned incentives for ageing-focused and community resources. Perhaps he would expand on that.
How frequently do State agencies, for example but not limited to the HSE and the County and City Management Association, CCMA, seek information from IDS-TILDA for forward planning?
Dr. McMahon also mentioned the need to develop innovative models of care to support people to age and live with dignity. What are the innovative models of care and how might they differ from others?
On medication and medicines optimisation, the new community pharmacy agreement has a particular focus on medicines optimisation. Is IDS-TILDA linked in with the Irish Pharmacy Union from a continuing professional development, CPD, and research provision perspective?
Also in the area of healthcare, needle aversion and needle resistance are prevalent among people with various intellectual disabilities. Is capillary blood-testing something that IDS-TILDA would look at or be familiar with? Is there provision of information in that regard to the HSE?
This is more of an opinion. There is a recurring theme at the committee that there is an absence of data and its use for forward planning. That seems to be the biggest impediment to meeting our obligations under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. You cannot manage what you cannot measure. The witnesses may have opinions. I realise there may not be enough time for all of that. Perhaps they would take note of the questions I have asked in case we have a second round.
Professor Mary McCarron:
I will take the question about innovative models of care. I thank the Deputy for her questions.
There is no denying that the move from congregated settings to community settings has been warmly welcomed. We never want to go back to an institutional model. However, we have people who are ageing in communities and are struggling to do so, perhaps in a house with five other people. The level of activity is often defined by the person at the lowest level of need. If Mary does not go to the cinema today, nobody goes. This is increasingly challenging.
Oftentimes, the only option or the response to those people is that they need to transfer to a long-stay nursing home, which is often bigger than the institution they left in the first place. We know from people with intellectual disabilities and the work we have been doing across the sector that this is not a model we are looking for. We need to look at what ageing village-type communities might look like and what a retirement model might look like for people so that they can age within their communities but at a smaller scale where they can get intensive supports.
There are perhaps other people with very complex needs. They may have severe mental health concerns and behaviours of concern that may need additional specialist-type supports. We need something in the middle. Many parents are struggling because they are unable to get the support they require. Oftentimes, care is only addressed when there is a crisis. When that crisis happens and a family member dies, not only does the person with an intellectual disability lose a parent, he or she also often loses the family and the whole community structure. We need much more planning and places for people to go. We all know there is a considerable lack of residential placements or housing for everybody. People with intellectual disabilities are very often much further down the pecking order when it comes to housing. We have a different type of homelessness for this population.
Dr. Martin McMahon:
One of the greatest challenges, and I think it speaks to many of the Deputy's questions, is data and how frequently organisations, such as the HSE, come looking for data. We work closely with the Department in identifying the ageing and changing needs to people with intellectual disabilities to help them forward plan. We cannot escape the fact that those who are known to services and are visible are the minority of people with intellectual disabilities who live within society. There is a cohort of people who we do not know about. There is a cohort who are unrepresented. The challenge with disability data in Ireland is that it is very hard to identify people with intellectual disabilities and to be able to link that to other different datasets and be able to look at the trend of needs and changes there.
That is a real challenge to the data infrastructure in Ireland. That speaks to a number of questions.
Regarding medication, which was another question that was asked, what we see with people with intellectual disabilities is that they experience high levels of polypharmacy - hyper-polypharmacy. Some of that is appropriate to their needs. As we highlighted in our opening statement, some of it is inappropriate, particularly the high use of psychotropic drugs and anti-psychotic medication. Regarding the policy landscape for the provision of medicines usage or optimisation in Ireland, it very much focuses on safe prescribing, storage and management. However, we need to start looking at optimisation. Are the drugs being prescribed appropriate? If they are appropriate, should we start looking at de-prescribing where appropriate? We take a fuller view of side effects and so on. Policy does not reflect that at the moment. It focuses very much on the process of medication management rather than the person centredness of medicines optimisation for people with intellectual disabilities.
That is a very valuable point that the Deputy raised on the community pharmacists. There is a role for that to support people with an intellectual disability as they are supported to manage their medicines. At the moment, what we are seeing is a different trend in medicine usage. We are starting to see the trends. The community pharmacies can be appropriate. There were questions regarding incentives. As people with an intellectual disability represent 1% to 3% of the population, they are a very small and typically invisible population. When there are public policies and strategies, there needs to be visibility and that they are not just captured in terms of a potentially vulnerable population but are also called out and recognised in policy. They need a framework to support their needs. That is the probably greatest incentive that is needed there.
Professor Mary McCarron:
To follow up on what Dr. McMahon said, health screening for this population needs to start at an earlier date than we see, perhaps, with the general population because we are seeing complex health concerns. That is why we are looking to have a much more life course approach. We need to recognise that Ireland now has the best data in the world, through IDS-TILDA, on the ageing of people with intellectual disabilities. People are looking to Ireland because we have that data. We need to enrol people at a much earlier age because many of the issues we are seeing are a reflection of earlier lifestyle and life opportunities. That is an issue. Our move is that we have a research and policy steering committee with the disability consultative committee, DCC. That has been very positive. We work very closely with the HSE. We have a lot of shared sessions. That is very valuable in terms of the relevance of this data and what it means for policy. We can monitor. That is something positive that we also need to recognise.
Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source
I welcome Professor McCarron and Dr. McMahon. I thank them for giving up their time to come into us, for their opening statement, and for the work that they do.
Ageing is a privilege denied to many. Along with ageing, it brings its own needs. For anyone with an intellectual disability, ageing is harder than it is for somebody who has not. I am very conscious of the carers who are ageing as well. I acknowledge the Before We Die organisation and the work it does. In an ideal world, where someone with an intellectual disability is ageing and their parents and carers are ageing, it would be great if there was a plan in place early for parents either getting unwell or passing on. The witnesses' evidence suggests that family carers are ageing, are often undersupported and are experiencing financial strain. What additional supports should be put in place to help families plan for the future and avoid a care crisis when parents can no longer provide the care and avoid a cliff edge when something happens?
Professor Mary McCarron:
The Senator raises a very important question. I thank her for that. As I mentioned earlier, it is often a crisis. That is dreadful for everybody. There needs to be future planning. It needs to be embedded within the system. It is quite ad hoc at the moment. We need to look at future planning. We have developed a future planning toolkit to assist family carers to engage in planning. We need to roll that out nationally and assist families.
Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source
Is that used?
Professor Mary McCarron:
It is used, but not enough. It is not widespread. It is there and developed. It can be and should be helpful to people. We need options for families. Very often, there are no options. It is only when there is a crisis and people relinquish care, often in a way that they do not want, that they can get support. There needs to be respite and types of respite that suit the family. That may be in home or out of home, but it needs to be regular and available. There also needs to be residential type options should families wish that to be the case and if the person with a disability wishes to move out of home. It is no more than we wish for any of our children. There are times in our children's or adults' lives that is a transition. We should also aspire to and hope for that for people with an intellectual disability. It is future planning, respite and having more long-term care options and out-of-home options should people want that.
Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source
The witnesses highlighted significant health inequalities, especially in osteoporosis, dementia, cancer and oral health. What is the area of most urgency or are they all of equal urgency? If the Government were to intervene, what would the witnesses see that looking like? How would they see the success of Government intervention?
Dr. Martin McMahon:
There are a number of areas of health that are important. I will touch on one of the answers we did not get to with Deputy Toole, which was the concept of reasonable adjustments. A lot of the time people with intellectual disabilities experience inequalities and inequities in the provision of healthcare because they are expected to conform to systems and processes for the general population. That can be a struggle. For example, cancer is a topic of research I am focused on in the area of intellectual disability. Internationally, it is consistent that people with intellectual disabilities develop cancer at earlier ages, have fewer treatment options or are afforded less treatment options, and die earlier in comparison with the general population. Cancer is a consistent area where people with intellectual disabilities experience significant inequities. If we take a look at the detection of cancer and how people are identified and look at the IDS-TILDA data, we see one of the main causes of death for people with an intellectual disability is cancer. Yet people could have been enrolled in IDS-TILDA over five waves and they may never have told us they had a diagnosis of cancer. That is not to say that, after they were enrolled in our study, they were diagnosed with cancer and died. It shows us that the timeframe from diagnosis to death is very short. That is consistent.
How can we make improvements? Screening is one option. Regarding improving the uptake of cancer screening, we have a successful national cancer screening programme in Ireland. Cervical screening uptake in Ireland is one of the highest in the OECD. There are lots of explainable reasons that is the case. For people with an intellectual disability, it is significantly lower. Typically, what we see is that people with an intellectual disability are not afforded the same opportunities for health surveillance and ongoing health management. There are a lot of reasons for that. Historically, it is about the way services were provided. We have an unusual delivery of disability services across Ireland. That is a legacy of how religious organisations provided care for people with an intellectual disability and how the State provided care for people with an intellectual disability.
Historically, people who lived in larger settings had access to doctors weekly, and to psychiatry, psychology, occupational therapy and all the other therapies. People with intellectual disabilities are now expected to be supported to access general health services, which is right, but they do not have the reasonable adjustments to support them to do that. If somebody with an intellectual disability needs support to access cancer screening but cannot do that, it may lead to a later diagnosis. If the person has difficulty self-reporting a complaint, be it pain or something else, it may take longer to access the GP, and so on.
Much of the time, the services are available but the adjustments to support people to access those services are not. Since they comprise a small proportion of the population, at 1% to 3%, they are frequently invisible to mainstream services. Cancer is one example. Tooth loss, which we talked about, is another. This involves a clear inequality. If we look at IDS-TILDA data for people with intellectual disabilities, we note that the level of inequity they experience by comparison with the general population is evident.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
Good morning and welcome to my colleagues from Trinity and, probably, my constituents.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Canvassing.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
I apologise because I am going to have to leave after this to attend a meeting of the health committee.
The key to all of this is being able to quantify the issues. I thank the witnesses for the extraordinary work they have done. I have attended many events, seminars and presentations in Trinity, so I am very much aware of the invaluable work they do.
To echo some of the comments my colleagues made, Before We Die tells us there are 55,000 adults with intellectual disabilities over the age of 25 living at home with parents who are in their 60s. They have been cared for by their parents. Although it involves a physical disability, I will join that cohort in August. I care for a son who will be over 25 at that point while I will be over 60. According to Before We Die, there are 2,000 adults with intellectual disabilities living with parents over the age of 70. That means that in ten years' time, there may be 57,000 adults with intellectual disabilities living at home with parents in their 70s. Is that a demographic time bomb? I am sorry to use tabloid language. Based on the witnesses' research, can they see any evidence that the Government is preparing for the time bomb and putting the infrastructure in place? As the witnesses put it, we warmly welcome decongregation, whereby people can age in the community with intensive support. Do the witnesses detect any evidence that the Government is preparing for these 57,000-plus people?
In addition to the 57,000 adults with intellectual disabilities, there are probably an equal or greater number of adults with physical disabilities who will still be at home with parents who are in their 70s. That is the future for people like me and my son. How would the witnesses characterise that? What language would they use to describe it, and can they see any evidence of meaningful preparation for it?
My second question is about what seems to be an assumption that disabled citizens are the responsibility of their ageing parents. The witnesses mentioned respite. I have never had any respite. We have never had any respite in the past 24 years, not a day of it. It does not exist in the community.
I recently met a group of consultants who work in the area of intellectual disability and who made a submission to me. Their advice to parents of children with intellectual disabilities who develop a mental illness, and there is often a lot of comorbidity, is to bring them to the emergency department and leave them there. The reason people are being overmedicated is that the required multidisciplinary teams do not exist in Ireland. There is only one team, and it operates as part of a pilot scheme in Cavan–Monaghan. There is no coverage across the rest of the country.
We received a letter from the head of disability services in HSE South West stating parents are legally responsible for the care and support of their children until they are 18, or until they are 23 if they are in full-time education, but that if they have a disability, they are legally obliged to care for them until they die. Is the assumption that people with a disability will stay at home something the witnesses have found in their research?
I am aware that I have asked two long questions, but I imagine the answers are short enough. On the first one, on the demographic time bomb, what do things look like?
Professor Mary McCarron:
When we go out and meet families, we hear it all the time. There is considerable concern about it, and I do not believe there is sufficient planning. As I mentioned earlier, there is a huge housing crisis. An actual event such as somebody staying in hospital and the family not taking the person home is often the only way to get care.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
Where do they end up?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
When Professor McCarron uses the word "there", does she mean admitted as an inpatient?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
I am a little confused. This is not directed at Professor McCarron, but the residential places do not exist.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
When Professor McCarron says they have to wait until they get a residential place, does she mean they are being put in nursing homes?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
These are all findings, but what about conclusions? Taking findings like these, stark as they are, and benchmarking them against the hypothesised best way to deal with this issue or international examples, how would Professor McCarron characterise them? What word would she use to describe them? I would describe them as abject.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
It is a crisis. I thank Professor McCarron.
On the question about the expectation that we, as parents, should take legal responsibility for caring for our disabled adult children until we die, is that expectation something the witnesses have come across? Is there any evidence that there is a legal basis for it?
Professor Mary McCarron:
There is no evidence that there is a legal basis for that. We had the recent carers referendum and we know the outcome of that, but many people feel there is no way out. Therefore, we need to take an honest look at out-of-home placements. We need to understand what that is going to look like and plan for the 57,000 who we know exist.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
As the professor says, that is not happening.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
We have had parents before the committee who said they hoped their adult children would die before they did. This is a thought that, shamefully, I have had myself. Would anybody in this room with beautiful children, such as my 22-year-old daughter, 18-year-old son who has just finished his leaving certificate and my eldest fellow, who is 25, wish any of them to die? Is there any other society in the world where people are told they have a legal responsibility to look after their children until they die and that, after that, there is a blank because it is not known what is going to happen to them? I am referring to the idea of wishing they would die. I understand the findings and the positivistic, quantitative realities, but how would the witnesses describe the phenomenological or qualitative aspect or the lived experience of people like me and my son?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
The witnesses state that 1% to 3% of the population have an intellectual disability. It is said that the population of the State is now 5.2 million. That suggests we have between 50,000 and 150,000 citizens with intellectual disabilities. Based on the information from the Before We Die campaign, that means most of them are living at home with ageing parents.
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
Is that the situation internationally, or are we unusual in that regard?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
If I am in Germany and have an adult child with an intellectual disability, will that person be living with me until I die and then go into a nursing home?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
I know that is not the case. They have what the witnesses described, which is that people should age in the community with intensive supports. I share the witnesses' view that we need that. It happens in other jurisdictions. It does not happen here.
I have a final question, if the witnesses will forgive me. When I did my research, the findings in relation to sexual violence and the systemic abuse of personnel in the Defence Forces were so stark.
I communicated those findings and conclusions very loudly because I felt there was an ethical imperative for me to signal this criminal behaviour. I experienced a lot of retaliation and a reprisal for that. We agree it is a tragedy and a crisis - I think it is abject. How are the witnesses communicating that to the principal stakeholders? Are they doing it with a sense of urgency? Are they knocking on the door every day and saying this is unacceptable?
Professor Mary McCarron:
We are making a lot of efforts to try to work with the Department of Children, Disability and Equality and the policy research steering committee. There are regular meetings to update them. Briefs are also prepared in order that they can understand the data. It is important that those responsible for policymaking understand what the data and the evidence are saying. They have that data and they know that data. We closed the institutions, which was really positive, but we did not open up anything in between. We now have a situation where we have-----
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
Apart from contributing to the dissemination of knowledge, does the centre have a role in the area of advocacy?
Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source
I thank the Professor McCarron. I really appreciate it..
Micheál Carrigy (Longford-Westmeath, Fine Gael)
Link to this: Individually | In context | Oireachtas source
I apologise for being late. I compliment the witnesses on the work they have done over a number of decades. I also compliment the centre on the courses that were put in place in Trinity and the Dundalk Institute of Technology. The latter were the first third level institutions to offer specific courses. I chaired the autism committee in the previous Oireachtas. We brought Dr. Hugo MacNeill and others before us, and we challenged the Minister of the day to provide courses across all universities. Eleven universities are now providing courses for children with intellectual disabilities and autism.
A review of the Disability Act is due. What proposals will the witnesses be submitting to the review in the context of changes they want made? Senator Clonan mentioned Germany. What other countries have types of best practice that should be replicated here? I chair the housing committee, and this is something we looked at. Senator Clonan referred to the Before We Die campaign. We need to build more accommodation that is specifically designed for persons with disabilities and care settings for people with intellectual disabilities. What proposals would the witnesses put to me, as chair of the housing committee?
There is also the issue of life expectancy in general. People are living longer, and that includes persons with disabilities. What changes do the witnesses feel we need to make to respond to that?
Dr. Martin McMahon:
One area that is fundamentally important is the fact that there is a legal right for people with intellectual disabilities to have full annual health assessments. That is a recommendation I would put forward. What we see in the UK is that anybody with a learning disability should have an annual health assessment. It is an entitlement. This speaks to the questions and some of the challenges that arise in that much of the time people with intellectual disabilities do not access primary care or GPs or have issues doing so. If we do not have a vehicle to support everybody with an intellectual disability to have a health assessment, their health needs are not going to be identified. In the context of ongoing surveillance, we can use cancer, oral health and all the other examples outlined in the opening statement, but if we do not have a process where people who are known to or are not known to services have a right to a yearly health assessment that is person-centred, holistic from head to toe and where the appropriate accommodations are put in place, then the position regarding the health needs of people with intellectual disabilities is not going to get better. They are going to disimprove. We are not going to be able to detect things earlier and then we will see the problems with, for example, cancer.
We talk about people with intellectual disabilities living longer. The level of complexity we are seeing now - this also speaks to Senator Clonan's point regarding the challenges that arise as people with intellectual disabilities age - is going to expand in the future with advances in healthcare and medicine. Some children are living with complex needs from young ages. Historically, these children maybe did not survive into adulthood. They are now surviving into adulthood as a result of advances in care. We are going to see that. One parent said to me, "Before, they did not think our children were going to grow up, but we are going to see that our children are going to grow up and are going to age with greater levels of complexity and that is going to be a significant concern." One of the main things I would advocate for is that people with intellectual disabilities should be entitled to and should have health assessments on a yearly basis. That should be facilitated.
Professor Mary McCarron:
There is a fundamental question we need to ask and answer honestly, namely where does the locus of care responsibility lie?. Does it lie with the family or does it lie with the State? We had the carer’s referendum, which answered that.
In terms of housing, I have said there is a new type of homelessness emerging for people with intellectual disabilities. Many struggle to get accommodation or a house. While we have respite and while we have increased it, what is available is not nearly enough to respond to the needs of family caregivers. We need different options. We need to ask people with intellectual disabilities and their families what they want. We have some information on that. In a country like Ireland, which is very wealthy in comparison with many, we should not have family caregivers stating that "I wish my family will pass away before I die." We have to look at what the residential type options look like and what housing will look like for people with disabilities. There is a such a demand for social housing as a result of homelessness. Will these people just fall off the list in terms of getting homes for themselves? No more than is the case for any of our family members, a person with an intellectual disability who reaches a certain age and who desires to move out of home should be supported in getting a home. If the family member is no longer able to sustain caregiving, they should not have to wait until there is a crisis or until they have to put their family member into a hospital or refuse to collect them from respite. No family member wants to be in the situation where they are the person whose door is locked when their child comes home. That is not what any family member in this State wishes. We have to try to look at the type and amount of housing we need to support people who are being cared for by families.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
Link to this: Individually | In context | Oireachtas source
In the housing committee, we have asked the Minister and the Department about setting targets, particularly for the local authorities. Heretofore, they have been given a number, whatever that might be. That needs to be broken down into a certain number of houses for persons with disabilities or intellectual disabilities. In addition, a certain number have to be age-friendly going forward. My understanding is that is going to happen.
Micheál Carrigy (Longford-Westmeath, Fine Gael)
Link to this: Individually | In context | Oireachtas source
Yes. Naturally enough, that should be taken into account when it is done. What is the position regarding best practice in Europe or elsewhere?
Professor Mary McCarron:
In the context of the deinstitutionalisation model, we particularly looked up to and were very much guided by the Nordic countries. Those countries are really struggling to deal with people with intellectual disabilities who are ageing. I have just come back from Australia, which we also looked up to. Australia is really in crisis and is struggling with how to respond to those among the population who have disabilities and who are increasingly ageing. Nobody has sorted it, and people are looking to Ireland to see if we can be the leaders in this field.
While there are pockets of good practice in Ireland and pockets of good practice everywhere, I do not think that anyone has really sorted the issue out because ageing is such a new phenomenon in this population.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Gabhaim buíochas leis na finnéithe go léir as an obair uilig atá déanta acu. To return to housing, Senators Murphy O'Mahony and Clonan and Deputy Carrigy all brought up Before We Die, which has focused on that circumstance whereby 2,000 adults with disabilities are being looked after by parents who are over the age of 70 and 500 are being looked after by those who are over 80. Tony Murray of Before We Die gave the example of a 97-year-old woman still looking after her Down's syndrome son. The most shocking thing was that of those involved with them, only 2% had a transition plan for housing. As Professor McCarron has said, the problem is that one way people get sorted is when disaster happens. Perhaps a parent goes into the accident and emergency department and then it may take three months or nine months but in general, the only people who can jump in there are in the for-profit sector, at an added cost. The professor also noted that as people could be three counties away from where they started, whatever bit of community connectivity was there is all out the window. It is about having the information, detailing it and then doing something with it. In this case that would probably be a lot cheaper. As the witnesses mentioned earlier, it is about having a comprehensive plan in relation to this. The Remember Us group also were in front of us and talked about a particular housing project. The set rules around congregated settings were having an impact on what they were trying to put together. There has to be some sort of sense and flexibility.
We can flick from there into health. Dr. McMahon spoke about health assessment. We do not have in-built reasonable accommodations to facilitate those with intellectual disabilities. To flick back to homelessness, we have been talking about the huge number of people, perhaps with mental health issues, that we all have come across who cannot necessarily get the resources they want. We also referred to the protections that are in place in order that we do not return to the mass institutionalisation we had but sometimes, that means somebody does not get the treatment they need. There is an older cohort with intellectual disabilities, including people we have had in here, who have fallen into homelessness. Generally this is about people who at least are in some element of a service. The promise from the HSE is community care records, the idea being we would have the information and then have a plan but I am not sure any of us would bet that we will be in here in the next year or two and all these issues will have been dealt with. It is a matter of how we actually facilitate this.
I will put the question initially to Dr. McMahon. Some of this needs to be ingrained into medical training from the point of view of reasonable accommodations. In that context, how do we ensure that a health assessment is done on a more vigorous level and that a plan is in place? We must make sure we have the facility, that we know the people and that the connectivity is there.
Reference was also made to tooth loss and other things that allow old age in as well, and the idea of learned frailty from a lack of exercise and of a number of things. This leaves a cohort of people open to all sorts.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I feel that with all of this there is no overall sense of having the data and having a plan with various aspects from health to housing.
Dr. Martin McMahon:
The integration is not there in terms of all these areas. Housing impacts on health and so on. That is one challenge but I think we need to have a really honest conversation about how we provide healthcare for people with intellectual disabilities. At the moment, it will be different across each regional health authority. There are community intellectual disability nurses, who may be allied to certain organisations, perhaps voluntary or not-for-profit or the HSE or whatever the case would be, but that is not universal. A person may be provided with a good community nursing service and intellectual disability service in one part of the country, while that is not available in another part of the country. We do not have a standard model of care for how we provide care for people with intellectual disabilities.
We definitely espouse a social model of care that does not medicalise people with an intellectual disability but we cannot escape the facts in our data and in the evidence from IDS-TILDA that the health needs of people with intellectual disability are extremely poor in comparison to all metrics for the general population. They have much greater challenges.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Cancer is an example.
Dr. Martin McMahon:
Yes. The cancer example is probably the most stark. This is work that is ongoing for people with an intellectual disability internationally. I am part of a European Union COST action; which is a networking grant that is just closing. Our colleagues across all European countries with developed and less developed health infrastructure have the same challenges. Ireland does not have a universal approach to provide care for people with intellectual disability.
The Deputy touched on when things break down and people have high levels of complex needs. What we start to see is the concept called "Friday afternoon commissioning", where somebody is in an accident and emergency department, somebody is moved to a nursing home or they are moved to respite. Then respite can turn into a long-term residential placement. Touching on Senator Clonan's point, this means that other people cannot get access to respite. There is a separation of housing and health and all these structures but specifically regarding the health needs, we do not have a universal approach towards a model of care for how we provide healthcare for people with intellectual disabilities.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
So what we need is that thing that is half promised around the community care records so at least the information is there. Then we need people responsible for ensuring that all these pieces are in place.
Dr. Martin McMahon:
It is all well and good to say that people with an intellectual disability can access their GP, which is fine, but if they do not have the support to access their GP, if they do not have-----
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
The GP does not necessarily facilitate-----
Dr. Martin McMahon:
That is not the GP's fault. GPs have their challenges, but perhaps the supports and infrastructure are not there. What if the supports are in Galway, for example, but not there in Louth, and we do not have a universal approach for how we provide that healthcare for people with intellectual disabilities?
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
And we are not doing the preventative piece either.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I am talking about that exercising scenario, for example, so the person does not have muscle atrophy and frailty.
Professor Mary McCarron:
Taking up Dr. McMahon's point on the GPs, a 15 minute GP consultation just simply will not work for many people with an intellectual disability. It will take 15 minutes for the person to familiarise themselves and to settle down. This is hugely problematic. That is the allotted time for any of us who go to a GP but for this population, it is hugely problematic.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Then it is the local authority, the HSE, and disability services around housing and those groups that are-----
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Moving on to the Fianna Fáil speaker-----
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
Apologies. I was unaware of the time.
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I doubt that. We are moving on to Fianna Fáil and Deputy Martin Daly, who has seven minutes.
Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source
Following on from Deputy Ó Murchú, he is on the right lines and I support everything in his line of questioning here.
Ruairí Ó Murchú (Louth, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I have that recorded.
Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source
I will come to the health issues and the housing issues within the time I have. On the health issues, while there is no doubt but that there is a real issue around the general health and well-being of people living with disability, it is also an issue around enduring mental health illnesses. There are no primary or secondary preventative programmes where the person would have protected time within a GP surgery provided by contract and by protocol.
In my experience as a GP, much of the care comes down to the commitment of an advocate for the person who is disabled, such as a GP who may be vocationally motivated and makes that time. It often does not make business sense but they will do it. In the dental service where I am on the Galway-Roscommon border, we had a very committed public health dentist in Roscommon who literally saw it as a vocation to look after his group of people who had long-term disability, and gave them the most outstanding care. However, in County Galway the waiting list is three years to see a dentist in a public clinic. There is a very fragmented service and it is also siloed off, so if someone was on that border or literally 500 m inside it, they could not go ten miles to Roscommon but would have to go to Galway. This does not make any common sense. We have in general practice the chronic disease management programme, which is a protocol that might serve in respect of a model of care maybe for people with intellectual disability or with enduring mental health issues in the community. We really do need to address that.
Dr. Martin McMahon:
That is a really valid point. On mental health specifically, if we take a look at some of the conditions people with an intellectual disability have lived with over the years, there are high levels of psychotropic prescribing and some other challenges. We really need to try to improve people's quality of life as best we can, first. If we want to tackle mental health difficulties within this population, we really need to try to make things better. As a society we have really tried to do that in terms of closing institutions and giving people access to their own front door. We have forgotten about their health needs, though. We have really pushed on in terms of people's social needs but we are kind of neglecting the fact that some people with an intellectual disability, biologically, are predisposed to certain conditions. In terms of chronic disease management, that is absolutely an area that could be addressed. We do not call out people with intellectual disabilities within policy. The national cancer strategy is up for renewal at the moment. If we look at the previous cancer strategy, given that cancer outcomes for people with intellectual disability are so poor, are they once mentioned in that strategy? No, they are not mentioned. Professor McCarron has a line that if people with intellectual disability are not named in policy and guidance, it is too late. There is not a funding stream to support that. The Deputy was talking about the vocation of general practitioners and dentists. There are fabulous general practitioners, dentists, nurses and allied health professionals throughout this country who go above and beyond to provide care. That is not good enough.
Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source
No.
Dr. Martin McMahon:
It is not good enough to rely on people's own good will. It does not make financial sense. In the UK, I think some of the NHS GPs have to have a certain number of people with varying needs such as a learning disability, mental health needs and so on. They have a type of quota system in some areas that is operated. We cannot rely on people's good will to meet the healthcare needs of people with an intellectual disability. We see pockets of good practice but across the country we see general absences. Often it could be too late by the time a GP sees somebody with an intellectual disability. If we do not have ongoing monitoring and surveillance, for example through community nursing - we have community intellectual disability nurses who see the person at the place where they live and do the ongoing health monitoring and are also the advocate for the person, so they know they need to see the GP or utilise whatever service it is - until we can operate a model of care, at that point, it is really difficult.
Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source
There is a real case for people living with intellectual disability and people with enduring mental health issues to have an advocate, and not just in the family, because that puts enormous pressure on families. I am aware of one mother who has a young boy with complex medical needs and intellectual disability, who spent literally three months herself, as a 28-year-old, negotiating with the HSE to get a care package to bring her boy home. She knows his life is not going to be long but she wants him at home and she is entitled to do that. She has given up her own career to look after him. We need those advocates in the system advocating and taking the pressure off family members, especially as parents get older in the system and themselves develop health issues. It is my experience that for a lot of people with maybe mild to moderate intellectual disability, not enough attention is paid to exercise and diet or to prevention. There are real issues around obesity, type 2 diabetes and hypertension. There are issues for people with enduring mental health issues who need to have lithium testing, for example. There is no protocol in the service for it, with the downside of thyroid problems and chronic renal failure. We really do need to take a much better approach to this.
We have people with intellectual disability who present to a hospital and may have complex medical needs as well. They are well known to everyone in the hospital. Everyone knows who they are because they are repeatedly admitted. They end up 12 hours on a trolley in an emergency room. Should there be dedicated physical space where people with an intellectual disability or complex medical needs can be assessed? Should there be a system whereby a register is kept, so everyone in that hospital knows that this young woman comes in with recurring urinary tract infections, requires antibiotics and IV fluids and should be admitted directly to a ward? Everyone knows this is so-and-so and we are going to take them straight in.
Dr. Martin McMahon:
Absolutely. In some settings, particularly in the UK, there is a flag system. It is identified on a person's electronic record that this person has an intellectual disability and whatever adjustments are required are flagged up. I am not sure of any setting in Ireland that has that. The Deputy might be familiar with the liaison intellectual disability nurse. That is a specialist intellectual disability nurse who works in a hospital, supports people with an intellectual disability from admission through to discharge, and supports and works with staff in the emergency department and across the setting. The challenge with that, although it evaluates really well, is that it is not universal. There are a couple of Dublin hospitals which have it. What typically happens is that it is typically one person. There is good will of potentially a director of nursing or an organisation which financially supports that to happen. It works really well, but it becomes burdensome on the staff because they could be in a large acute hospital supporting multiple people with an intellectual disability. What happens then? It breaks down. There is a real challenge there with maintaining the ongoing emphasis. That is absolutely one thing that can be done. In terms of space, yes, there should be provision for people who have got an intellectual disability or other neurodivergent conditions. However, I think the reality is that there is not in multiple places. Due to the nature of emergency departments in particular, there are real challenges around needs. The points the Deputy makes are all very valid.
Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source
Thank you.
Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source
I welcome the witnesses. I was fortunate to have the opportunity to work as a research assistant on a project of The Irish Longitudinal Study on Ageing, TILDA, many years ago in St. James's Hospital. I am very aware of how consequential the witnesses' work is. It is incumbent on us as a committee and a political system to pay much greater attention to health issues affecting older persons and older persons with an intellectual disability. It seems the level of fragmentation between disability services, primary care, acute hospitals and older persons' services is similar to what we see among services for young people and adults. Do the witnesses have any thoughts on how clinical responsibility could be made more integrated for older people with an intellectual disability? How should care and rehabilitation be co-ordinated for a person who may be struggling with intellectual disability, physical frailty, dementia or other complex conditions? Do we need a named care co-ordinator or dedicated multidisciplinary older adult, intellectual disability pathway in every region? If so, what should be the make-up of such a team? What disciplines should we have? What sort of population size should such a team serve?
Professor Mary McCarron:
We have chronic disease management programmes already in place, so that is a good infrastructure and a starting point.
We have a couple of issues. Many of the people on those chronic disease management programmes have no training or background whatsoever in intellectual disability. It is not part of their undergraduate curricula in occupational therapy, physiotherapy medicine, dentistry or pharmacy. We are trying to address that. That is something that needs to happen and it must be embedded in the undergraduate curricula of these professionals.
In Ireland, we are in a better position than most countries in that we have intellectual disability nursing as a specialist branch of the register so at a very minimum, there should be a nurse with specialist training on all of these teams to support the other people on these teams to assist. One good example of progress that we have made concerns dementia in people with intellectual disability, which was and still is a huge problem, particularly for those with Down's syndrome. We had hugely limited access to memory assessment and huge inequity. We managed to use the data to establish the national intellectual disability memory clinic at Tallaght University Hospital. Professor Seán Kennelly is the clinical director of that. We have a number of advanced nurse practitioners who are intellectual disability trained supporting that clinic along with speech and language, psychology, occupational therapy, etc. We have seen a model that has worked in some areas and we can roll out something similar but we need to look at the current structures that we have, particularly chronic disease management programmes, and see how we can boost them but also make something that is universal across the country at a policy level and not just in pockets.
Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source
Professor McCarron distinguishes between medicines management and medicines optimisation and points to the continuing high use of psychotropic and antipsychotic medication among older adults with an intellectual disability. To what extent is medication being used almost as a substitute for access to psychology, occupational therapy, speech and language therapy or behavioural supports and how can we address risks of overprescribing for older adults with an intellectual disability? Even if we got to a point of those therapeutic supports being much better resourced at at some future stage, people are often placed on increasing levels of medication over time in the context of mood or behavioural disturbance and that then becomes their baseline medication level. Should we have regular multidisciplinary medication reviews and active consideration of mandatory deprescribing?
Professor Mary McCarron:
Absolutely. We should have something like the STOPP-START criteria that we have for the general population. It should be a starting point that we should have multidisciplinary reviews and regular medication reviews. Many people are prescribed and we have seen a change in the prescribing pattern. There is a lot of historical prescribing here so we have older generations who are prescribed large amounts. We have seen a change in prescribing patterns in younger generations, which is positive, and we need to see whether that continues but there needs to be access to a full range of multidisciplinary supports and medication. In particular, psychotropic medication should be a last resort after everything else has been supplied. We know that there are very serious side effects that people experience on these medications. Many people with an intellectual disability may not be able to record side effects and that is added burden for those individuals.
Dr. Martin McMahon:
Most of the policy touches on medication management as opposed to optimisation, for example safe prescribing, safe storage and safe administration, in terms of the reviews, deprescribing and so on. One of the challenges is that if we take someone with an intellectual disability and behaviours that may challenge services, a lot of the time, there is this level of inherent risk to the person themselves, to the service, to other service users and maybe to the community so people are prescribed psychotropic medication, typically antipsychotics, to suppress behaviour as risk mitigation in terms of the interventions referred to by Professor McCarron, which are typically longitudinal. Deputy Daly spoke about mental health and improving people's quality of life. Often medication is used as a risk management tool, which may be appropriate at that point in time because lots of the other therapeutic interventions may not be there to be implemented. It is a really challenging situation because there is appropriate use of these drugs in certain circumstances, notwithstanding that it should be a last resort. Lots of interventions are longitudinal and complex to address different levels of challenges and it also has to be acknowledged that people are not just being prescribed psychotropic drugs and antipsychotics because they have an intellectual disability. There are lots of other complex environmental factors outside of that.
We are seeing changes, which Professor McCarron pointed to. More people with an intellectual disability are being prescribed antidepressant drugs, which is probably a good thing that maybe was unrepresented ten years ago. It is being recognised that this may be appropriate for people with an intellectual disability.
Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source
I thank the witnesses for being here today and for this very interesting conversation. As people get older, maybe their needs increase. The issue of carers, family members and community supports arises. What does it mean for those people? What specific issues should they be aware of? Sometimes it becomes harder for them to deal with people with intellectual disabilities as they get older. The whole issue of health inequality arises. As people get older, are there any examples of good practice?
Professor Mary McCarron:
The example I gave involving dementia and how we have addressed that issue is probably a model that has worked and we can look at the roll-out of that whereby we have the national public clinic and are looking at the health clinic for prevention. We need to look at the rolling-out of that. We have a lot of level 2 memory clinics as well throughout the intellectual disability sector, so that is something. As we said in our opening statement, many people are ageing and they are happy and we need to add not only years but life to those years for people with an intellectual disability.
Prevention is key. We need to look at how we can push back the years of frailty, help people to live much more active lives and build circles of support for people in a really meaningful way that will enhance their lives in older years. Many members of this older generation of people with an intellectual disability are not married, many do not have children and many do not have grandchildren. They do not have those circles of support that many others who do not have partners have, so how will they be replaced? We have done some really good work with one of the organisations looking at building a model around circles of support. That is really important for this population in particular.
Dr. Martin McMahon:
Regarding health inequalities, some of the things we do for the general population in Ireland such as making different vaccines available or screening for different cancers, that is also available to people with an intellectual disability, so theoretically we have equality of access. One thing we can learn as people age is that we can make things the same but if there is unfairness for people with an intellectual disability when it comes to accessing them, we create this inherent inequity and this unfairness in the system. When I think of people with an intellectual disability, there is nothing that says that they cannot access the exact same things in Ireland as anyone else. We say that we have equality and that we make things the same but there is inherent unfairness because the needs of people with an intellectual disability sometimes prohibit them and that is what makes it unfair and produces this inequity within the system. This goes back to Deputy Toole's first point. When she was asking questions, what she was really getting at were reasonable adjustments.
As a society, it is about how we can make reasonable adjustments for people with an intellectual disability so that they can equally access health services to meet their needs, and so that it is not just written on paper that we have this equality. We need to create this equity for people with intellectual disabilities as they age and grow older. The memory clinic Professor McCarron has spoken about does that, but it is only one pocket of practice.
Professor Mary McCarron:
It is only one problem. Following on from Dr. McMahon's point, making reasonable adjustments takes time. Time is often the biggest issue when it comes to accessing healthcare, whether that is with a GP or at a general hospital. It is the time business. We also need to understand that education and wealth are probably among the strongest determinants of health and well-being. Many people with intellectual disabilities are often not rich in education or wealth, so their choices are limited compared to many others in society.
Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source
The witnesses touched on some of the whole well-being piece - mental health, physical activities and that. I know some people with intellectual disabilities love it, while others need encouragement to get involved. Certainly, those community cafes where they interact with one another are absolutely fantastic. There are so many services with different get-togethers - I hate calling them clinics - or whatever. Should there be more joined-up thinking between some of the organisations, or is there such thinking that I am not aware of? Certainly, many people get great benefit from attending some of these services.
Professor Mary McCarron:
Many people with intellectual disabilities attend the services that are there for the general population, but we need additional supports to support those organisations. I was very involved in Age & Opportunity and Age Action, but when they needed it, we developed a PPals programme which developed physical activity competence in people with intellectual disability to enable them to be physically active in the community, which was very successful. However, the level of sedentary behaviour is a worrying trend in this population. We see many people leading very sedentary lifestyles, so we need to address that. This builds into what Dr. McMahon spoke about earlier with the early onset of frailty. Building competence in people with intellectual disabilities at a much younger age is very important.
Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source
I have one other question. If the witnesses were to think of a policy change that should happen and would be complementary to the whole issue, what would that be or what would they like to see happen?
Dr. Martin McMahon:
We need to come from a health promotion perspective. If we take a look around health inequality research, it is too late when - forgive me - we are downstream pulling bodies out of the river. We need to operate a health promotion perspective to try to improve people's health and to maintain it at a younger age. We need to be upstream, which we do for the general population, and it needs to call out and include people with intellectual disabilities. We need to be upstream and targeted. As we said in our opening statement, poor health is not guaranteed. We need to act and get in there earlier. Sedentary behaviour is a perfect example. We know the related links there. If we can get in earlier to operate from a health promotion perspective, we can improve the lives of people with an intellectual disability. Currently in IDS-TILDA, 72% of people with intellectual disabilities are multi-morbid, and that is static across the five waves. We are running analysis on wave six at present, and it will be the same. We are talking about three quarters of people ageing with an intellectual disability being multi-morbid.
Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source
Thank you very much.
Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source
I thank everyone for being here this morning. I am very angry this morning, and it is right on topic. We have heard about the early intervention that is needed. We really need to increase the resources, especially in the area of dental. We need to improve training there. I am currently working with a constituent whose child has been on a dental waiting list for years. He already has problems. They contacted me on 8 June because the mom had noticed his behaviour was unusual for a couple of weeks. The child is non-verbal, so it is difficult to ascertain what the matter is. Eventually, she was able to look inside his mouth and realised there was a flap of gum hanging down. When they got to the dentist, of course the child did not want the dentist to look inside his mouth; he finds it difficult to sit in the chair. The mom knows this. She knew from the get-go that he needed to be sedated and brought to the hospital. However, you have to go through all the steps of booking the dentist, going there to have an unsuccessful appointment and then trying to get on an emergency list. Since 8 June, they have been on an emergency list for dental treatment. Today, he finally got his appointment for 24 July. That is with the intervention of a TD. This is what we are dealing with. What is his mouth going to look like in 20 years' time? Training is needed for our dentists to be able to listen to our parents, but we also have to increase resources in that area.
Some positive things are being seen in early intervention. The children's charity Variety is bringing in adapted trikes and bikes. The GAA is pursuing its Sport for All initiative. We are starting to move away from the disabled group and additional needs group going for a walk, going bowling, walking to the shop to get a treat or going to the chip shop to hand over their money and get chips. That was all well and nice, but we are now starting to have real inclusion. I think of Cuimsiú in Mayo, which is the adapted version of Comhaltas. A little girl, Hannah Dunford, asked her parents Chuck and Mairéad on the way home from a fleadh when she would be able to take part in the fleadh. They have now made an inclusive Comhaltas event called Cuimsiú, which is about people with additional needs being able to fully participate in music, song and dance. We are seeing these improvements in inclusion for cultural aspects and sport. How long do the witnesses think those kind of improvements will take to translate into the IDS-TILDA in terms of chronic illness and outcomes?
Professor Mary McCarron:
Such initiatives are to be warmly welcomed. We see pockets of that more inclusive approach, like with the GAA and all the things that are happening. We are looking at an older population. We are interested in enrolling people at a younger age, where we can then see the change. We need to work with the age-appropriate groups in society to make them accessible to people with intellectual disability. This includes the Alzheimer's and well-being cafes, and the other fitness clubs established throughout the country. We need to prepare and enrol people to support those with intellectual disabilities to engage with them. However, we have a bit to go when it comes to the older population.
Going back to the Deputy's point on dental, that is a tragedy. We are working very closely with the Dublin Dental Hospital. There is an absolute need for special care dentistry for this population. We need access to this specialist type of expertise, including the environments and the preparedness of the environment when the likes of that young boy comes into a dental hospital for care.
Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source
Many of the children I have worked with do not have the capacity to sit in a waiting room for 20 minutes. However, there are also good news stories. There is a fantastic dentist in Castlebar who used to see one of the kids I worked with every six weeks. He did not need to see him every six weeks, but he allowed him to come in and sit in the chair. He would put a bit of rinse in his mouth and let him out again. This meant that if there was an issue, he was used to coming in and there would be no problem. He would put him first in the morning because he knew there was no capacity for him to wait. When there is training - it is all about training, education and environment - there can be wonderful outcomes. The switch into meaningful inclusion is probably the biggest thing we can do in society.
The witnesses talked about gyms. There is a huge cohort of teenage children with intellectual disabilities who are not brought into the gym to meet with personal trainers.
When they go out for the day, they might be going down to the bowling alley to take part in the bowling and get chips, which they love, but if they are already suffering with a little bit of obesity, that is not going to target the issue.
Dr. Martin McMahon:
A change of mindset. The Deputy talked about going out, but something that used to frustrate me was people with intellectual disabilities being driven around the place in cars to access places. They should be supported to develop the skills to use public transport where it is available. That then starts to give different life skills and increases activity. That was one thing that used to always come into my head - we are obsessed with driving people with intellectual disabilities around, but they should be supported in other ways if they are going to get a takeaway, going to the bowling alley or whatever. Viewing people with intellectual disabilities as having that level of competence and as socially valued members of society needs to be ingrained in society. When we see people who contribute and have that social competence, we start to change the mindset and people with intellectual disabilities become more ingrained and visible in society. That is the point the Deputy is getting at. We are seeing that, but we need more visibility and integration if people with intellectual disabilities are to be seen as being as competent as the Deputy or I. We will then start to change people's mindset.
Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source
The advocacy groups are going a long way towards that. There is a County Mayo advocacy group that I have engaged with a number of times. Being able to use one’s own voice to say what one needs is important. When somebody whom we would traditionally have experienced being in the institutions of the past or going to a day service and maybe getting out now and again is saying that they want to be able to access the bus, go to the cinema and have a meaningful job, that is different than us trying to advocate on behalf of people with disabilities.
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
This has been a very important and interesting meeting, with a lot of contributions. It is the first meeting where every single member possible has turned up to. Obviously, there are reasons people cannot turn up, but this is the first meeting where everyone has turned up.
We will now go to the second round with two minutes for questions and answers. Actually, we have not finished round 1. I had noted Senator Harmon, but I forgot to call her. I apologise.
Laura Harmon (Labour)
Link to this: Individually | In context | Oireachtas source
I thank our witnesses for their presentations and statements. I was listening online. This is an important session, as the Cathaoirleach said. The witnesses have raised some stark findings and issues that a lot of the general public are not aware of in terms of health and mental health needs that are not being met.
I have a few questions. It was interesting to hear what Dr. McMahon said about how independent living was about much more than just changing address.
In terms of the issue of loneliness and mental health, do the witnesses have recommendations on how that can be better tackled through policy or legislative changes? Is it about better planning for social participation? I am sure that ties into transport as well as other matters. I wish to hear the witnesses’ views on that. Ireland as a whole has been labelled the loneliest country in the EU. I am sure that is doubled down on when we are talking about people with intellectual disabilities. How can we tackle that?
Professor Mary McCarron:
We have data to show that loneliness is quite high among people with intellectual disabilities, and many have transitioned into loneliness. Some have transitioned out. I mentioned the importance of building circles of support through community participation, having friends, having things to do, leisure time and one’s own interests. Building that type of lifestyle for people is important. It is about having a best friend and friends outside the home, and broadening circles of support for people. Particularly as family members age, they may not be able to offer that level of support, so we need to broaden that.
Regarding transport and accessibility, we reported on the high levels of mobility problems that people had. Accessible transport is a real problem for this population. Many still have to worry about whether they can get on the bus or train. They are very unsure if the bus will actually stop and, if they are a wheelchair user, they will be able to get on it. It should be much more seamless so that if a person has a disability, for example, being in a wheelchair, the bus will stop and they can get on it.
Dr. Martin McMahon:
In terms of mental health, what we see in IDS-TILDA data is that we have high rates of mental illness. Across the international intellectual disability research landscape, people with intellectual disabilities have high levels of mental health needs. A lot of that is explainable if we take a look at where people with intellectual disabilities may have come from. For example, they may have lived in institutions with very difficult environments, they might have poor health needs, or they might be isolated and stigmatised. Deputy Daly touched on this earlier - we need to look at improving people's quality of life. If we here today had experienced some of the conditions that people with intellectual disabilities have experienced, we could have been affected in the same way.
We need to look at improvements and focusing on improving quality of life. Professor McCarron touched on circles of support, and that is a nice project that we can do. Who is important to these people? What do they want? What is their voice and what are their wishes? If they are involved in services, then community organisations, family members and caregivers are operating on the basis that they are going to try to help the person meet their needs and wishes. If we start to address and tackle the needs and wishes of people with intellectual disabilities and try to improve their quality of life, we will reduce the poorer mental health outcomes that this population experiences.
We have touched on the issue of medicines quite a bit. Even though people with intellectual disabilities have got higher levels of certain mental health conditions than the general population, their use of psychotropic and antipsychotic medication far outweighs the prevalence of those conditions. Those medications are used for other indications, which is a concern. We need to ask how we can improve people's quality of life. By asking that question and trying to address it, it is a way out of these mental health issues.
Laura Harmon (Labour)
Link to this: Individually | In context | Oireachtas source
In relation to geography, is there an urban-rural divide in terms of services? Are there particular areas that the witnesses would say are less serviced than others or black spots or are doing well? I am from Cork, and I am curious about the south-west region. Is there anything the witnesses want to comment on in relation to geography?
Professor Mary McCarron:
That is something we are focusing on a lot more because we now have eircodes and so on, so we are much better positioned to focus on where there is regional inequality. Certainly, we can see that there are parts of rural Ireland where access to services is much poorer and the health professionals are simply not there. There might be a visiting psychiatrist flying in from another country to monitor people. We have to look at availability and inequity at a regional level. There is inequity at regional levels, and we will have greater data on that.
Dr. Martin McMahon:
As an example of that, we spoke to a lady a few years ago in north Donegal who had to have cancer treatment, but she had to go to Galway. She had to get a bus from north Donegal to Sligo to get a transfer to go to Galway, and she was a wheelchair user. Members can imagine the challenges. If we take a look at access to services, that is something that really sticks in my mind. That would be a fairly significant undertaking for somebody who was physically fit, never mind someone with a cancer diagnosis.
I remember her describing how difficult that was.
Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source
To go back to the point the witnesses made about having frequent interactions with the Department, given all that we have discussed, will any of those items be considered as policy actions going forward?
Professor Mary McCarron:
We have produced a number of policy briefing papers on things like transport, oral health, medicines and many other issues. I am an eternal optimist. I believe there is a great interest in trying to better understand the data from IDS-TILDA and how that can inform policy. We have established a policy lab at Trinity as well, so we have a strong focus of the translation of these findings into policy and are actively working in that space.
Dr. Martin McMahon:
We take at look at residential care for people with intellectual disabilities and the time to move on policy from 2011, my understanding is it has been a real advocate of driving that policy along with the HSE. There is also an understanding that it is time to reflect and to look at the models of care for people with intellectual disability and how we meet the needs of people who potentially have more complex needs. Senator Clonan talked about some of the issues there. There is definitely an understanding that we really need to look at where we move to and the future directions around developing appropriate models of need, particularly for the people with an intellectual disability who are ageing and have high levels of complexity.
Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source
That is hopeful. I thank the witnesses.
Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source
I want to again thank the witnesses for coming in and the great work that they do. Any question I had has been covered by my colleagues. Is there anything the witnesses want to add?
Professor Mary McCarron:
No, I just want to thank the members for the opportunity to come to speak with them today. It is important. IDS-TILDA is a great source of data. We need to enrol people at a much earlier age because many of the issues we are seeing are a reflection on things in earlier childhood. They are some of the things we need to be-----
Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source
The witnesses research shows better outcomes for people in community settings but they also caution against a simplistic view of that as it may simply amount to a change address. What indicators would allow them to distinguish between genuine community integration and a person living in a different type of institutional setting? I have experienced a lot of challenges accessing data on out of area placements for children and adults with an intellectual disability. Do the witnesses have any sense of how displaced some of our older population with intellectual disabilities in residential settings are? I was very struck by something that Tony Murray said at a Before We Die public meeting in Cork. He said that when we moved on from congregated settings, we replaced the high walls of institutions with distance. To what degree are older adults affected by that trend?
Dr. Martin McMahon:
We have got the historical legacy of how care was originally provided in Ireland. There was an interesting fact a number of years ago that Sligo had one of the highest levels of disability in Ireland. That was not by virtue of more people in Sligo having a disability, it was that there was a lot of large institutional settings there with lots of people from Donegal and Mayo residing in them. Even through decongregation, my sense would be that there would still be a lot of people who may be from the west of Ireland living in dispersed community live-in environments in the Dublin region. That is by virtue of the way services were historically provided. I imagine that is the case. There have been attempts, and I have spoken to different organisations where people may have been relocated back to where they are from, but in terms of the sense of how many people are out of area, I would not have a sense of that. The historical set up and delivery of disability services will impact how that looks. However, as people age out and die, in regard to how services are now provided, there will be a different perspective in the future.
Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source
I thank the witnesses for attending today and providing the various briefing documents in advance of the meeting. I also thank the members for making their contributions. I was struck by the witnesses' data and their input into IDS-TILDA. It is important, and we will try to progress it as best we can.
As everybody on this committee is aware, planning for an ageing population with disabilities requires a co-ordinated approach across disability services, primary care, acute healthcare, community services and social supports. This is the final public meeting in this Dáil session. The committee will resume examining the broad interests of intersecting disability topics in the autumn.
I again thank the witnesses, the members for attending and all of the stakeholders who have engaged with the committee over the past while. With the members' agreement, we will go into private session to deal with housekeeping matters. Is that agreed? Agreed.