Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senators Clonan and Seery Kearney.

The purpose of today's meeting is to discuss health and well-being for people with disabilities. On behalf of the committee I welcome representatives from the Department of Health: Mr. Greg Dempsey, deputy secretary general; Ms Anne O'Brien, assistant principal; Ms Siobhán Hargis, principal officer; Dr Anne Barry-Reidy, assistant principal officer; and Siobhain Crean, assistant principal officer. I also welcome, from the HSE, Dr. Rosie Gowran, clinical lead for people with disabilities.

Before we begin, witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity in such a way as to make him or her identifiable or otherwise engage in speech that might be regarded as damaging to the name of a person or entity. Therefore, if their statements are potentially defamatory in relation to identifiable persons or entities, they will be directed to discontinue their remarks and it is imperative that they comply with any such direction.

Members are again reminded of the same long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or an official outside the House, either by name or in such a way as to make him or her identifiable. I also remind members who are joining us remotely that they must be within the confines of the Leinster House complex to contribute to the public meeting.

Without further ado, I invite Mr. Dempsey to make his opening remarks.

Mr. Greg Dempsey:

I thank the Chairperson and members of the committee for the invitation to attend today, and for rescheduling from the earlier date, to discuss the topic of health and well-being for persons with disabilities. I am joined by Siobhán Hargis, Siobhain Crean, Anne O'Brien and Anne Barry-Reidy, colleagues from the Department, and by Dr. Rosie Gowran, clinical lead for people with disabilities from the HSE. The Department takes its responsibility for ensuring good health and well-being for all individuals across the life course, including people with disabilities, very seriously, and is acutely conscious of its obligations under the United Nations Convention on the Rights of Persons with Disability, UNCRPD, to provide accessible, non-discriminatory health services, taking into account the protection and promotion of the human rights of persons with disabilities in all policies and programmes.

The Department of Health's Statement of Strategy 2023-2025 supports us in achieving the vision of a healthier Ireland, with improved health and well-being for all throughout life and with the right care delivered in the right place at the right time. Under the Sláintecare programme of healthcare reform, we have increased investment through the enhanced community care programme, delivering increased levels of healthcare in general practice, primary care and community-based services. However, challenges do remain, particularly in respect of streamlined accessible pathways to and within community services, which are critically important to individuals with disabilities. In order to address these challenges, we are undertaking actions such as the following. We are developing sustainable solutions, in both the short and long term, to address growing demand for primary care therapy services, with workstreams focused on improving productivity, progressing targeted interventions to address those waiting the longest for therapy services and the development of a waiting list protocol to support a consistent national approach to waiting list management.

The HSE National Immunisation Office has taken steps to ensure that vaccine guidance is inclusive and accessible to all, including developing clear, easy-to-understand materials and visual aids like infographics and videos to convey key messages. The national screening service has published a comprehensive Breaking Down Barriers report outlining the findings of a study to assess the needs of disabled people in accessing Ireland’s screening programmes, particularly for women with disability. The report documents people’s perceptions and experiences and presents recommendations for improving accessibility of screening services. The Government’s national oral health policy provides the roadmap to fundamental reform of oral healthcare services, including improved access for people with disability, particularly people with additional or complex dental care needs.

The Department is currently developing a regulatory framework for home support providers, with the aim of ensuring that all service users are provided with high quality care. In order to deliver our expanding range of health and social care services, significant investment is being made into the health and social care workforce. In addition, workforce plans are being developed to ensure the workforce will be aligned to the services required.

Continuing substantial investment in new medicines, coupled with new investment in enhanced workforce capacity within the medicines assessment and reimbursement process, is providing enhanced access to the latest innovative medicines. Medicines expenditure is anticipated to reach in excess of €3.3 billion this year, with a further €30 million to be made available for new medicines in 2025.

The Department of Health is developing a new national rare disease strategy and has established an interagency, interdisciplinary steering group and public consultation to support a comprehensive evidence-informed rare diseases plan to improve health and social care pathways for children, adults and older people living with a disease. The Department regularly publishes content and runs campaigns to promote health literacy and disease prevention.

For example, new public mental health content was developed on yourmentalhealth.ie,providing comprehensive information and advice about mental health and well-being, and the Making the Connections public information campaign was launched on World Mental Health Day. It focuses on mental health literacy and signposts people to new content on anxiety, low mood, stress and sleep issues.

In addition, under the Healthy Ireland framework and strategic action plan, the Department continues to progress and fund the promotion of physical and mental health and well-being, population health planning, prevention of illness and aiding people to live a healthier lifestyle by introducing an array of health initiatives.

The Department and the HSE continuously collaborate with other Departments and State bodies to progress strategies, policies and initiatives. Under Healthy Ireland, we are working with the Department of the Taoiseach and the Department of Public Expenditure, National Development Plan Delivery and Reform on the wider Government well-being framework, and with the Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media and Sport Ireland on the children’s sport participation and physical activity study and Ireland’s physical activity research collaboration. We are also working with the Department of Children, Equality, Disability, Integration and Youth on the new national disability strategy and the successor LGBTI+ inclusion strategy.

The Department is progressing a number of initiatives to promote understanding and awareness of health services, and to improve accessibility of these services for all individuals. In line with our obligations under the UNCRPD, we, together with the HSE at delivery level, are working to ensure that services are designed on a universal basis. We have made progress and are committed to continuous improvement. I thank the committee and look forward to members questions.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Dempsey. We will now go to our members. The first member offering is Deputy Frankie Feighan, in substitution for Senator Mary Seery Kearney.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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I thank Mr. Dempsey for the presentation. It was very interesting and informative. I have three questions to ask. First, what proportion of public health clinics and hospitals meet national accessibility standards, including accessible buildings and environment and medical and health equipment?

Second, as politicians we have had a lot of problems through the years with medical cards and eligibility for medical cards. Regarding the medical card, when were the guidelines and calculations used to assess the qualification of the under-70s medical card last reviewed? Will there be a review of the medical card assessment process?

Third, the committee recently heard testimony from the father of a young man with a severe acquired brain injury, their experience of the dental system, and having to wait five years for an appointment. What plans are in place to improve the delays in receiving dental treatment for persons with disabilities? This was an issue which, about 15 or 16 years ago, I experienced in my own constituency. It was absolutely harrowing for the family but we did everything we could and eventually, after three or four years, a conclusion was reached. I thought that would be a thing of the past. I was disappointed when that presentation was made to our committee that it is still pertaining. I know there are difficulties but is there anything better the witnesses can tell me to the effect that these blockages are not going to be the same, or what can we do about it?

I thank the witnesses for all their great work, and I look forward to their contributions.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Mr. Dempsey want to take that question, or maybe his colleagues?

Mr. Greg Dempsey:

I will start and might then hand over. I will take the questions in reverse order, if that is okay.

In respect of oral health services, we accept there are problems with the current system. We are taking actions to improve and increase the number of medical students who take the route of dentistry, and specifically to work with people with more acute needs. The Government is developing a new oral health policy, Smile agus Sláinte, and that policy has two goals: to provide the supports to enable every individual to achieve their personal best oral health and to reduce oral health inequalities across the population by enabling vulnerable groups to access and improve oral health. As part of that, we envisage developing a new contract with dentists to attract more individuals to that profession, which we believe will help with the demand.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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With regard to people with disabilities, there seems to be a lot of picking and choosing.

Mr. Greg Dempsey:

There are gaps in the provision of service at the moment and differences in the pathway to care but the new policy aims to deliver a new care pathway for individuals, starting at the dentist. Based on their assessment, they will go to specialist HSE facilities or, in some cases, particularly for people in residential facilities, the teams will go to them.

On eligibility, I do not know the answer to the specific question but we can get back to the Deputy on that.

With regard to a review, I would say that, overall, a new unit has been established in the Department which is undertaking a programme to consider all aspects of eligibility across the health service. That will include eligibility for medical cards. It is a big piece of work, as the Deputy can imagine, because the current eligibility framework has developed and evolved over time. This is a bottom-up approach with regard to what is the right framework to have.

On the first question, unfortunately I do not have the specific percentages. My understanding is that, as much as possible, the HSE facilities are supposed to be 100% accessible. That is our aim. I do not know if my colleagues have the answer to that question.

Dr. Rosie Gowran:

I do not have the figures but, regarding the development of retrofitting and new buildings, they will be in line with the regulations. There is also work to be done on accessible equipment and so on, particularly for people who may be wheelchair users. Those sorts of things are definitely being looked at with respect to specialist services or safer screening services and so on. That is in train.

With regard to the climate and sustainability action plan, when the energy ratings of buildings and stuff like that is being retrofitted and upgraded, consideration is given to the building themselves and making them accessible to all people. That involves looking not just at physical access, but also the building itself from the universal design perspective.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Deputy Feighan referred to accessibility of buildings, and that is extremely important in centres, but accessibility of information is also very important. Do the Department of Health and the HSE incorporate easy-to-read versions on their websites and hard copies of literature? Do they provide ISL to those who require it? Do they provide information through braille? People who are blind need to be able to access information as well.

On the buildings and centres, the committee heard from a disabled women's DPO. Its representatives specifically referenced screening programmes, such as BreastCheck and cervical screening, which are not accessible for disabled people. The BreastCheck units are usually mobile units. The doorways are very narrow and they are definitely not suitable for wheelchair users. Anybody with a mobility issue would have difficulty accessing BreastCheck. To access a smear test, some disabled people may require a hoist. We need to ensure those provisions are in place so that disabled women can access those services.

With regard to forms of supports and care in the community, we hear from many different people here. Some have physical disabilities, acquired disabilities or neurological conditions and they tell us repeatedly that the services are not there in the community. People with MS, motor neurone disease or Parkinson's are finding it difficult to access physio or occupational therapy. Those who have an acquired injury may come through the rehabilitation hospital and then come home to no supports. Psychology is really important for those people as well and the primary care lists for children and adults are extremely long.

There needs to be a plan to address this because it is just not fair. We are not encouraging or enabling people to live their best lives.

Children are facing huge waiting lists within primary care services and within the CDNTs. Early intervention is so important for children with autism and physical or intellectual disabilities. They need support at the earliest possible opportunity but it is not being provided. Many times CDNTs or primary care providers will offer a block of speech and language therapy or occupational therapy with no consideration given as to whether that is sufficient for the individual, who may need more or less than is provided within the block. This needs to be reviewed. Is there going to be a review of Progressing Disability Services? In my opinion, it is not working and we need to have a stakeholder review of it. We need to assess whether there are examples of best practice in some teams and determine what else we can do to address the shortages of therapists within our teams. There has to be a reason people are not joining those teams and are opting to go into the private sector.

Home care supports were mentioned in the opening statement. What is the ratio of personal assistant services to home care services? Disabled people tell us that in a lot of cases, they do not need care. Some may need home care packages but many want a personal assistant service where they can determine what supports they need and when. They may need support with personal care, with getting to work, with going shopping or on a social outing and so forth. They want a personal assistant who they can employ to assist them in whatever way they see fit rather than having a home care package allocated, with a person coming in for a half an hour in the morning and a half an hour at night, which really only suits the carer and not the person receiving the care.

I echo Deputy Feighan's comments about the medical card. The means test threshold is far too low. People on social protection payments are over the limit in many cases and that is ridiculous.

Mr. Greg Dempsey:

I will start answering the questions but will be calling on my colleagues to respond to some of them. The Deputy asked whether the information is accessible. I can answer in the affirmative. The Department's website, for example, can be read using software that translates the contents into voice. The HSE makes considerable effort to ensure that health materials, promotional materials and the content on its website are accessible. It produces materials, including advertisements, in accessible formats including easy-to-read, braille, audio and so on. It also follows plain English principles in all material. All television advertising is subtitled and has Irish Sign Language interpretation.

In terms of screening-----

Michael Moynihan (Cork North West, Fianna Fail)
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I am really sorry to interrupt but a vote has been called in the Dáil Chamber on Second Stage of the Seanad Electoral (University Members) (Amendment) Bill, to allow the Bill to progress to Committee Stage. This is not the actual voting block, which is due to take place much later. We will have to suspend for around 15 minutes to allow the vote to take place and then we will be back. My apologies but the witnesses can take a breather for a few minutes.

Michael Moynihan (Cork North West, Fianna Fail)
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Mr. Dempsey may wish to respond to Deputy Tully's questions.

Mr. Greg Dempsey:

I had covered the accessibility question. I will make one other point on the briefing I got. The HSE has pointed out that since August 2021, it has been audited on an annual basis by the NDA and it expects that monitoring and audit to continue indefinitely.

The next question Deputy Tully had was on screening. The national screening service has published a comprehensive report called Breaking Down Barriers, which outlines the finding of a study to access the needs of disabled people using Ireland's screening programme. The report gives people's perceptions and experiences and makes a number of recommendations. Those recommendations are now being implemented by the national screening services and being overseen by the HSE's equity oversight committee. To give a flavour of the recommendations, disability awareness training for all NSS staff and then tailored training for NSS access officers is recommended. These are the people who liaise with disabled people, the carers and family members, to facilitate accommodations to appointments, longer appointments, wheelchair access and so forth.

They have also created resources for all four programmes in accessible formats, such as easy-read leaflets. That is around developing an awareness among potential users of the benefits of screening and so forth. Finally, they are involving disabled people in the design of national spatial strategy, NSS, services. That was a key recommendation, so they are making good on that.

Reference was made to the lack - for want of a better word - of therapists and the impact this is having on primary care waiting lists. We are doing a few things in this regard. We are adopting a programmatic approach to waiting lists to try to reduce them. We are doing workforce planning generally, but specifically around matching population growth and translating that into health needs and then identifying the gaps where we will need particular skill sets in the future. In response to that, we consider where they might come from. An obvious place is increasing training and education places. We are working with the Department of Further and Higher Education, Research, Innovation and Science on this and we have increased the number of therapist places this year.

We are also working with the Department of Children, Equality, Disability, Integration and Youth because to some extent, a number of services are competing for the same skill set, so we are working to make sure, as much as possible, that we are not competing against each other and that we are making best use of the limited resources at our disposal. I can provide more detail, if necessary, on the waiting lists but I will keep going and I can come back to it.

Homecare supports are delivered by the Department of Children, Equality, Disability, Integration and Youth but I do not want to be saying that too much so I have a brief from the Department which I will quote from, but bear in mind that these are the Department's figures. It has an action plan for disability services from 2024 to 2026 which contains targets for additional personal assistant and home support hours. For the first two quarters of this year, the Department indicates that the number of personal assistant, PA, hours was up by 8.2% compared to the same period last year. That reflects additional PA hours supporting people in their own communities. A total of 2,865 people are in receipt of PA services, which is 4.6% ahead of the national service plan, NSP, target. Home support hours delivered, to the end of Q 2, are 8.2% ahead of the NSP target and significantly ahead of the same period last year. The Department has indicated that some of this is due to intensive support packages.

On the medical card thresholds, the HSE is providing access to medical cards in line with the qualifying financial threshold. However, every effort is made to support applicants who apply for a medical card to take account of any difficult circumstances. For example, discretionary medical cards can be issued to people with significant medical expenses or emergency medical cards can be issued. As the members are probably aware, medical cards can also be issued to patients who are terminally ill.

Progressing disability services comes under the remit of the Department of Department of Children, Equality, Disability, Integration and Youth, so I am reluctant to comment on it. Dr. Gowran has indicated that she would like to come in on that.

Dr. Rosie Gowran:

There will be a review by the NDA in relation to progressing disability services. It is in the planning phase at the moment. Obviously, the committee is aware of the roadmap and its 50 actions, which continue to be addressed. Regarding recruitment and retention and looking particularly at the CDNTs, from the clinical programme perspective, we are looking at issues in relation to practice education and to support students into practice education within the CDNTs. The evidence shows that if a person has experience working in an area, they are more likely to apply for a job in that area. It is critical that we encourage students across the country to get a practice education experience within the CDNTs. We have worked with the Department of Department of Further and Higher Education, Research, Innovation and Science, with representatives from the higher education institutes, HEI, and with CDNT managers and representatives from the disability services to develop a guidance for practice education. We also work with the National Health and Social Care Professions Office, HSCP, to utilise some of its resources for sustainable practice education.

The roadmap identified the need to support every student with a whole-time equivalent staff member or therapist. We do not want students to have a poor experience or for the practice educators to feel they are not supported in taking students. We have worked together to develop a guidance. Four key areas in relation to communication were identified, including communication with the HEIs and how they can support people to take students within CDNTs and create an information platform where people can communicate is important. We also looked at the different models of practice education such as one-to-one and two-to-one and project-based models. Obviously, they all have to align with the CORU standards in respect of people meeting the required competencies. There are a lot of examples of that so we have been working on collecting that kind of information. We will work with the HEIs to support the development of that within the guidance.

We are also looking at utilising some of the evaluation tools the HSCP office has developed. This will allow us to see how well things are working for the students, the practice educators and everybody involved. We also consider the infrastructure to support that so that we are not just developing a guidance that is making recommendations but that we are looking at administrative support in the system. We are hoping that this will be ready to roll out in Q 1 of 2025, so it is nearly finished. That is a really good piece.

There is also lots of development in relation to recruitment and retention, with a focus on that for CDNTs. Obviously, we are aware of the deficits in the system at the moment.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank everyone for coming in. In the opening statement, we heard the Department taking responsibility for ensuring good health and well-being for all individuals across their life course, including people with disabilities, very seriously and being acutely conscious of the obligations under the UNCRPD. We are in crisis. While out canvassing, I meet parents and we speak about the CDNT in Carlow. It has no psychologists and no staff to answer phones. We have children waiting for assessment. If they go privately, people often have to borrow money to get their child assessed and there is a six-month waiting list. If they are on the public health list, the waiting time is two years. That is unacceptable. It is not good enough and the number of families in difficulty who come to my office is a disgrace. These families are being broken and they are tormented. We speak about early intervention but it is not happening. I have spoken to the Minister of State, Deputy Anne Rabbitte, about this on several occasions. I know that it is about recruitment and staff and that there was not an embargo in the disability area, but it does not matter.

The situation in Carlow CDNT is so unfair on the few staff who are there because they are burnt out. There is no one to even answer the phones. Parents are not even getting a call back. We are at a critical stage now. We were to have a meeting about CHO 5 with the regional executive officer, Martina Queally, on Friday and she cancelled. I was very disappointed about that, although I am very disappointed in general, because the services a really bad.

I want to speak about CAMHS. I am holding a big public meeting next week, with really good speakers coming to it, about mental health and the concerns such as the time that people are waiting looking for a bed. One is trying to get them help. Families are coming to me.

In the review of the CAMHS by Dr. Finnerty, there was a recommendation for regulation of CAMHS. The call for legislation was repeated in the Mental Health Commission annual report on the regulation of CAMHS.

I am concerned about the services at present. I am concerned about the children who need them but I am also concerned about the parents. Last week, AsIAm was here. They spoke about the Same Chance Report. It stated that 58% of people surveyed felt that the healthcare system in Ireland was not inclusive in the case of both disability service and healthcare services in general. Is that a huge concern or not?

I am tormented in the sense that I am on to the HSE, I am on to the Ministers, I have families coming in tormented and I just cannot get results. It keeps going back to, "We need more staff." I understand that we have issues with staff but I cannot go back and tell that family we cannot recruit. I cannot go back and tell that child that he or she will not be assessed for two years. I do not understand, even here today, what is happening, in the sense that we have obligations. We have children who need assessments and we are not providing them. I have people willing to borrow money from the credit union and the banks to get their child assessed and then some of them are accepted and some of them are not. I believe we have hit rock bottom. We cannot go any lower. As for the CDNT in Carlow, it is not fair and as I said, I am not here to blame any staff member. I telephone them all the time. I telephone the HSE. What will the Department do? What can be done for the families that need support?

I want to speak also about medical cards, another area about which I have huge concerns. We spoke about medical cards being means tested. First of all, when one is on a medical card, one could be assessed in the first year. One can be lucky if it is three years, because it goes between one year and three years. If one has a medical card, one has to be assessed on that.

On invalidity, I have people who would love to go for a little part-time work for a few hours, as they are entitled to. The fear of losing their disability payment is not encouraging them. We are now in a system where we have people who are genuinely on medical cards and on disability payments who could get those few hours of work but the system is failing them. From talking to families all the time, I fear the concerns in that regard. I deal with it daily.

We speak about access to buildings. I note that is a concern for the Department in hospitals, doctors' surgeries, etc., but we are not building enough houses for people with disabilities, such as people in wheelchairs. A number of people have approached me who are in a wheelchair or who have a disability and who need a bungalow. We need to have more regulation on bungalows whereby people who need them can get them. There is nothing there and it is getting worse. We have buildings. They are good buildings but they are not wheelchair accessible.

Overall we need to look at a system that, I believe, is failing. We need to do something drastic on this now.

I was out canvassing the other night and had a lady close the door on me. She said that I did nothing to help her. It is not that I did not, because she knows I did. She came back and said that she knew I did and she was sorry, but she is tormented because her child cannot be assessed for two to three years. What could I say to her? I could not say anything to her.

I do not know whether the Department realises how bad it is. I am telling the Department it is the biggest issue coming up. It is the biggest issue facing families and children that I have ever come across.

I am telling the Department the truth. I am telling the Department as I see it daily. I am telling the Department I believe we are in crisis.

Michael Moynihan (Cork North West, Fianna Fail)
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Does Mr. Dempsey want to start?

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I hope they got all that. There were a lot of questions there.

Michael Moynihan (Cork North West, Fianna Fail)
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Or maybe the HSE? Does Mr. Dempsey want to start?

Mr. Greg Dempsey:

Yes, I will. I thank the Deputy for her questions. In respect of the CDNTs, which is under the Department of children, I know from talking to colleagues that they are acutely aware of the issues and they are considering responses. We are working with them on two of the responses. In particular, we are working on the staffing issues in partnership to provide extra places and more people coming through. As I mentioned earlier on, we are also looking at the different areas where the same skill set is being used in the assessment of need, the CDNT and the therapies and considering how best to use the limited skill sets while we also consider how we can increase the capacity of that. I might leave it there on that one.

On CAMHS, I will ask Ms Hargis to respond.

Ms Siobhán Hargis:

On the Deputy's point regarding the regulation of CAMHS, the Mental Health Bill is currently moving through the House and we expect to be on Committee Stage within the coming weeks. We are currently finalising, with the OPC and key stakeholders, a number of amendments to that Bill. The Act will allow for the regulation of CAMHS by the Mental Health Commission.

It is not the case that we will only wait until the Act is commenced to start looking at regulation of CAMHS and, more broadly, community services. Work is ongoing at present and will continue to progress over the coming months and years to make sure that we move towards the regulation of CAMHS and community services in a speedy fashion because it is something that is supported by the Act and is very important.

The Deputy referenced Dr. Finnerty's finding in the Mental Health Commission report into CAMHS. The Deputy may be aware the child and youth mental health office was established last year within the HSE and has an assistant national director lead, as well as a clinical lead. That office has been working over the past year in the development of an action plan that brings together the recommendations of all the reports over the past number of years, including the Mental Health Commission report and the Maskey report, as well as the recommendations within other audits and reports such as the prescribing audit, and the COG audit as well. That action plan, which, I understand, is due to be published in the coming weeks, will not only provide an opportunity to address all of those recommendations and bring them together but also will address opportunities for service improvement and co-ordinated service improvement planning.

Some of those improvements to CAMHS involve waiting list initiatives. It is recognised that there is a long list for CAMHS and that there is a growing demand for CAMHS services. Last year, €3 million was provided for additional activity to reduce CAMHS waiting lists. That is in addition to the core funding for CAMHS. That funding this year was put in the base to be recurring each year and ring-fenced for CAMHS additionality.

It is not enough to look at additionality. Service improvement is also needed to ensure that children can access services quickly. Examples of service improvement within the CAMHS service include the trialling of the no-wrong door, a single-point-of-access model which allows referrals to go to a single point in order that they can be triaged by CAMHS, by primary care and by disability services. This means that no child is waiting on an inappropriate waiting list or perhaps on multiple waiting lists, but instead that the needs of that child can be met when needed and in a timely fashion.

We also have the development of other examples, such as CAMHS hubs, which allow for short brief interventions when children are in particular crisis. A number of those have been funded over the past couple of years and are running and we are also rolling out a liaison out-of-hours model of care, as well as continued joint working across service groups.

At the heart of a lot of the service improvement is a recognition that co-working and collaborate working is in the best interests of those who need the services, be it mental health services, disability or primary care. That family should access the service they need when they need it as opposed to going down one route, then another route and another route.

Dr. Rosie Gowran:

On that point, under the roadmap there is a number of working groups in train at present.

We are reviewing the national access policy and the joint protocol in respect of its implementation to see how well that is working. That is currently in train.

I acknowledge what the Deputy said on the challenges. The HSE is very aware of that and it is trying to put many things in place to address some of those issues. All we can do is apologise to the people who are waiting. It is very challenging. However, a number of good things are happening within the system. When people access the services, they get a really good service. As the Deputy acknowledged, the people who work in the service are doing a great job. We recognise that they need support. We are looking at clinical governance and supervision to support staff as well. We are looking at that and leading on it within the national clinical programme for people with disability, working closely with access and integration and the disability services. We recognise the crisis. It is hard to say that nothing is being done. Lots is being done to try to address it. When there is a challenge to fill posts within the system, it is difficult to deliver services when there are not people in posts. However, there is much work happening on recruitment and retention. It is not making excuses but it is trying to support that development and find ways to address the waiting lists and to support people when they need to access services. We are all following the same goal, which is to support people, particularly children, to access services and get the intervention they need, not just the assessment.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank Mr. Dempsey and everyone for their input. Before I go to the questions I have, I just want to say that in CHO 9, we have many problems very similar to what has been said about school places and people getting diagnosed. We have young kids on the waiting list for long periods. That is an ongoing thing. A lot of work has been done but there is a serious problem there. It appears there are not enough people there. The recruitment has not worked. That needs to be addressed. We need to get more people with the expertise to deal with this.

I wish to ask a few questions. Regarding people with disabilities and the Government’s national oral health policy, there are people with complex dental care needs. What plans are in place to improve delays in receiving dental treatment for persons with disabilities?

People with disabilities live between 15 and 25 years less than the rest of the population. Do we see, with all the plans in place, that we can reduce that? I am curious because it has bugged me that people with disabilities or people with autism tend to die much younger. Can we extend their lifespans?

There is no system for health checks for persons with learning disabilities. That is what has been said. Is there a plan to do something to directly address that? What extra steps are being taken to facilitate vaccine roll-out and screening services for persons with disabilities and to ensure that under-represented groups are reached? There are people outside of the system not getting addressed in some way.

There is also a growing demand for primary care therapy services for people with disabilities. There is a plan to address waiting lists, setting up a protocol. We heard about these waiting lists. How will this protocol work? What steps will be taken to try to address this?

Mr. Greg Dempsey:

We will take the questions in order. Dr. Barry-Reidy will talk about the oral health policy.

Dr. Anne Barry-Reidy:

We are happy to be here to discuss oral healthcare services among the other range of services. It is important to state that we are very aware there are issues currently and long-standing ones for people with additional needs and disabilities in terms of their access to oral healthcare services. We have a national oral health policy, namely, Smile agus Sláintecare. In developing policy and gathering the evidence base and in consulting, it was abundantly clear that people with additional needs are experiencing poor oral health outcomes. We are very clear about that.

I am very aware of international best practice and evidence in designing the future model of service. First and foremost, we are embedding a mainstreaming approach for people with disabilities. What that means is people need to be supported in the first instance to attend a local general dental practice that they can choose. That requires that we have updated contractual arrangements in place for adult medical card holders and also, for the first time, for children. We are aware there are access and capacity issues in the system, both publicly and privately, that are having a bearing on access to care for adults and children. In the fullness of the policy, we have a suite of reforms under way looking at capacity, strategic workforce planning and education and training. That is all to support modernised packages of care where general dental practices can take on a contract and deliver to people in the community, including those with additional needs. This means people with additional needs can be supported to attend more frequently than the general population. That can be needed to address their health conditions. They can also access additional treatment items that may not be needed in the same frequency by members of the general population. For families trying to co-ordinate care, there may be parents, children, elderly parents and people with additional needs. In accessing and co-ordinating access to dental care for families, it is important that the model needs to be made much simpler. They need to be facilitated to choose a dental practice in their community that is accessible to them. Whether they are an adult, child or older person, or whether they have additional needs, they need to be supported to attend in their general dental practice setting. That is the concept of mainstreaming as it applies to oral healthcare services.

We are aware as well that there is a small proportion of the population who, with the best of service reforms, will not be able to attend a general dental care practice for, possibly, the entirety of their care. Of course, we have our salaried HSE oral healthcare services. We have our directly employed dentists and broader dental teams. That will remain in place and is a crucial element of our future model of service. That will re-orient and those people will be skilled and their teams developed to focus on providing care for those with additional needs. What that might look like for patients is that they are ideally attending in a general dental practice setting for as much as their care as is feasible. They may be referred by a general dentist into the HSE for an episode of care. The HSE then has the additional time available. They are employed by the State. They have access to additional technologies, be that physical infrastructure, such as hoists and wheelchair tilts, access to physically accessible modern primary care centres or access to sedation services of various types. For people who are unable to access the entirety of their care in their local general dental practice, the HSE is available as a safety net service to provide care, more so to those with moderate to profound additional needs who cannot access that care in a general dental practice setting.

We are aware that access to services under anaesthesia can be required. That is a prominent feature of the model of service at present. We intend to have a much greater preventative element of care. When people can access care from birth, which is the intention, although that is not happening at the moment, they are supported to maintain their oral health to reduce the likelihood of ending up in a situation where something has gone wrong with their oral health and they need to be referred for care and, for people with additional needs, that can look like they need to attend for a general anaesthetic.

To summarise it, the ethos of the policy is about accessing care from birth, which is not where we are at present with our public schemes, emphasising preventative care, supporting everybody with affordability and access, but recognising that people with additional needs need additional support to access care.

I will touch briefly on people in residential settings or people who are supported to live at home who in either instance may be, for a variety of reasons, at greater risk of not attending a dentist or being unable to do so. That may be due to a lack of understanding of the service available. It is quite a disjointed service at present. The HSE will be tasked with providing that safety net service. We have a clinical governance piece whereby our senior dentists in the HSE are putting in place approaches to ensure they understand the range of population need in the dental area for which they are responsible. That may look like going into a residential facilities, doing an assessment of the oral health needs and understanding what needs to happen to put those people in touch with a dentist. It will ideally be in a general dental practice setting but some people will need to come in to the HSE.

I will touch on some of the investment that has been in place. We are finalising an implementation plan at present between the Department and the HSE. It was inherent in the policy approved by the Government in 2019 that one of the first things we needed to do was to address the access issues at present for those with additional needs. That is a phase one priority in the implementation plan being finalised. In budget 2023, the Minister awarded an additional €2 million to the HSE for 2025, which will increase to €4 million in 2026. Although the specific details need to be finalised, one of the things we have agreed with the HSE that we will do with that money is to start to develop that approach for the HSE to be in touch with residential settings. We will assess and understand what services those people actually need in order that we can start to design in a very informed and systematic way what that service, which we do not have in place at present, will look like to take people who are in residential facilities and get them the care they need. As was described at the start of the session, the majority of people can attend a dental practice setting in one way or another. Particularly for older people, there will be a proportion who are too frail at that point in their lives to physically attend and we will need to develop some sort of approach whereby the HSE can attend proactively. Again, prevention is the real cornerstone there and, in some cases, with some changes we have envisaged, dental hygienists and other members of the dental team will be very well placed to deliver those simple aspects of preventative care.

Dessie Ellis (Dublin North West, Sinn Fein)
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The issue I came across was of a young lad with Down's syndrome who could not get a tooth removed and had to search everywhere. Doctors were not signed up to this or helping out and I found it to be really disturbing that he went two, three or four days or whatever it was in pain and without being treated. It is one of the things I have encountered.

Dr. Anne Barry-Reidy:

The Deputy would not be alone in having that experience. Certainly, in the contacts that come in through the political system and directly through patients into the Department people speak of having that experience. It will always be the case that there will be a proportion of the population that needs to access services under some form of sedation or anaesthesia, and we need to do more to improve access to that. The regionalisation model and the integration of community care with acute care will be very important there. In the scenario the Deputy described where a child needs a tooth extracted, we need to get that at a point before the tooth declines to the point where it needs to be extracted. It is about preventative care. We are very clear that people with additional needs who need anaesthesia to access care are the ones who suffer the most from lack of access to preventative care from birth. It is important to state the HSE is in progress of developing new packages of care for nought- to seven-year-olds, starting with nought- to two-year-olds. What that means is that all children can be supported, as is the HSE's recommendation, to attend a dentist for the first time before the age of one. That is not something that is facilitated by our public model of care at present but we acknowledge it is best evidence and practice.

For children who go on to be diagnosed with any sort of additional need or disability, it is really important that they get access to that basic assessment from birth. This is around checking their teeth are coming in, giving advice to parents about minding those teeth and gums as teeth are coming through, basic advice about diet and things like that. It is children who go on to be diagnosed with additional needs who are most in need of that basic preventative care at an early age to prevent problems subsequently developing.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Barry-Reidy very much.

Dr. Rosie Gowran:

I want to acknowledge Dr. Caoimhin Mac Giolla Phadraig, who is leading on looking at the Brush My Teeth initiative and also Keep My Teeth and has developed a number of resources, supported by the HSE and a number of institutions. He makes accessible resources for people, particularly people with intellectual disabilities and those who are ageing with intellectual disabilities, as part of the IDS-TILDA study at Trinity College. There are a number of resources there. I attended an IDS-TILDA conference last week at which he presented on the challenges related to some of the things that have been mentioned. It is certainly something I will be looking at from a clinical programme perspective as a point of priority. In particular, I will be looking at the issue of residential services and ensuring there is prevention, but also good oral health and hygiene practices, and supporting that resource to be put in place. I will be working on that in the new year.

Michael Moynihan (Cork North West, Fianna Fail)
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There was a question on vaccination.

Mr. Greg Dempsey:

In the response I received from the National Immunisation Office, it is split into the childhood programmes and the Covid and flu programmes. In respect of the childhood programmes, the National Immunisation Office has various initiatives to ensure the material parents will use is clear and easy to understand and avoids complex medical jargon. It uses leaflets, posters and digital content but it is all very comprehensible. It also ensures the information on its digital platforms is compatible with screen readers and so forth. The intention is that parents of all children will be able to understand what the vaccine programme is about and be assured of its safety.

In respect of Covid and flu vaccines, from 1 October this year the HSE vaccination teams provide on-site winter vaccinations to residents of residential care facilities. That is older persons, people with disabilities, those in mental health facilities and individuals who are housebound. For children's flu vaccines, they are being offered the nasal flu spray in their schools.

Dessie Ellis (Dublin North West, Sinn Fein)
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What is the law relating to someone who refuses to allow their children to be vaccinated, if the child has a disability or otherwise, as for whatever reason they have an objection? Is there a law or do we just have to go along with the person? What is the situation?

Mr. Greg Dempsey:

There is no law which requires people to take vaccinations, whether that is an individual or a person who is making the decision, such as a parent. There is no law that can make someone take a vaccine.

Dessie Ellis (Dublin North West, Sinn Fein)
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I know there is no law but I am curious as to whether there is any sort of mechanism that compels people to do it in some way.

Mr. Greg Dempsey:

Not that I am aware of. As health practitioners, we view vaccination as being very beneficial. The HSE and the Department encourage people to enter into vaccination programmes or to take specific vaccinations. That is as far as it goes.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Dempsey. There are a number of questions. I will go back to the issue of the teams that have been developed around the country for progressing disability services, and the resources and challenges there. A lot of primary care centres have physiotherapists, speech and language therapists and occupational therapists.

They seem to be working in a different area. Is there scope for greater integration of all those who work within the HSE, whether they are in primary care centres or in disability services? Is it the case that people are working in silos or are we developing two different teams? Should the professionals who are working there integrate the disability services more into the mainstream? Would that help?

There were plans by some service providers to develop alternative respite care on foot of HIQA regulations and so on. How has the HSE expanded the provision of alternative respite?

Another matter came to my attention recently. A person with dementia got two weeks of respite care, which was hugely beneficial for everybody concerned. I was asked whether those spaces are something we should look at, considering that the nursing homes have a large number of activities for people. The community nursing homes run by the HSE or the private nursing homes have many activities going on. Would it be possible that people with dementia, who benefit greatly from this communicative involvement, could attend these activities even if they are not full residential clients? Could we expand this to have those people attend on a day service basis, with appropriate funding put in place to ensure the placements with the organisations?

These are some of the issues. I have a few more, so we might deal with those first and then come back to the others.

Mr. Greg Dempsey:

I will start off with the first question and I will then ask colleagues to come in. As I referred to earlier, we simply do have a shortage in skill sets. Demand is coming from the children's disability network teams, CDNTs, from the primary care waiting list, and the assessment of needs. We are looking at various ways to respond and mitigate those. One of those initiatives involves the two Departments together looking at the different ways we use those scarce resources. I do not have more detail than that. Ms O'Brien will talk briefly about what we are doing on the primary care waiting list.

Ms Anne O'Brien:

It has been raised already, but there are challenges in terms of the primary care waiting list. A question was asked about protocol development. Those physiotherapists, occupational therapists and speech and language therapists operating in primary care centres and out of primary care centres are servicing those primary care waiting lists, with CDNTs serving children with more complex needs from the disability services. There are two sets of waiting lists and there are challenges there. On the programmatic approach being taken to that, there are challenges. There has been a programme of work established between the Department and the HSE, with a dedicated governance arrangement looking at various work streams, including: a protocol development; a waiting list management protocol development; and long waiters, namely the people who on those waiting lists for primary care therapies for a very long time. It is also looking at productivity and how resources are being used within primary care. It is a significant piece of work. Some elements of it will be delivered in the short term and some, such as the protocol development that is being supported by the evidence for policy programme, in the longer term. That is a collaboration between the Health Research Board and the Department, putting in place a research team to look at best practice for developing a waiting list management protocol and really driving more timely access to primary care therapy services.

Mr. Greg Dempsey:

I will ask Dr. Gowran to come in at this point.

Dr. Rosie Gowran:

The Cathaoirleach mentioned concern around the silo piece. I cannot answer that question in its entirety. With regard to looking at the joint protocol and as referred to earlier, however, the single point of access to ensure that there is no wrong door and that people access the services they need, they may need something in primary care or within the CDNT, it is really about trying to work together jointly to ensure people get access to the services they need, whether it is mental health services, primary care, or the children's disability network teams.

Michael Moynihan (Cork North West, Fianna Fail)
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What of my query on the day care in the community hospitals or the nursing homes? Has that been looked at as a possibility?

Mr. Greg Dempsey:

Not that I am aware of but I will certainly take it back. There are possible insurance or staffing issues but we will certainly take it back and see if it has been considered in the past or if it is something that could be considered in the future.

Dr. Rosie Gowran:

I am aware that the Department of Children, Equality, Disability, Integration and Youth is looking at different respite initiatives and various types of respite that might be available to people, including day respite and different types of resources. I cannot give any detail here now but that is certainly being looked at for adult services and children's services.

Michael Moynihan (Cork North West, Fianna Fail)
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Back in January we met with the HSE and the St. Joseph's Foundation in Charleville about providing alternative respite. Some of the service providers would have been able to take families away for two or three weekends, for example to Trabolgan and so on. They were doing four weekends but they are no longer available. They put forward a proposal for some of their buildings to be used for activities but they have since got extra buildings. Is there an initiative from within the HSE and the Department of Health to look at who is putting up their hand to develop meaningful, alternative respite? Many families would not be able to go on a traditional holiday or the standard holiday such as those the majority of us can benefit from. The expertise is needed and the right surroundings. Many of the service providers have built up a lot of activities within their facilities, such as hydrotherapy pools, Astroturf and different developments, over the years. Some have built up garden centres. They close every Friday evening from 5 p.m. until 8 a.m on Monday morning. It could be alternative respite if they were encouraged to open up and see if it is possible to build that kind of respite service throughout the country. From my interaction with many of the service providers throughout the country, I know they would be very engaged. There are issues in ensuring they have teams available to work those weekends, and that comes to recruitment within the HSE, and then it comes back to a wall they cannot go beyond. Has that developed into policy the Department officials would be pushing up line to develop?

Dr. Rosie Gowran:

Because we are acutely aware of the issues in relation to the need for different types of respite it is certainly something we would be looking at within the clinical programme to support any initiative or guidance that can be developed. There are lots of different alternatives currently available but also lots more to be done. The HSE is working with the Department of Children, Equality, Disability, Integration and Youth to address those issues. If there are examples, as the Cathaoirleach has given, I am sure the Department is looking at all avenues in relation to that.

Michael Moynihan (Cork North West, Fianna Fail)
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The committee made a proposal to the Department of Health as part of its public consultation on safeguarding. What is the update on that? Where has that moved to from the Department of Health point of view?

The committee meets representatives from the disabled persons organisations a great deal. The phrase "Nothing about us without us" is very good, but sometimes when one delves deep into policies that have been developed, one feels that they really have not got to the meat of the challenges faced by people with disabilities, regardless of what those challenges might be.

Have the HSE and Department tried to develop a full list of the disabled persons organisations that it can contact whenever discussions are going on? To try to ensure we have a better society in the future, how much of the raw data is available? World health commentary would suggest an increase in autism and intellectual disabilities across the world and Ireland is also experiencing that. Is there a fundamental acceptance of the challenges? The members have spoken about the system being broken and it is broken. There was a better service 25 years ago in terms of disabilities. Maybe they were not meaningful and maybe we have expanded the services. At the same time, some services were better. Do the HSE and the Department have raw data showing the demand in five, ten, 15 or 20 years' time? Going back to the point Deputy Ellis made, for some of them their lifespan is not as great as other people's. Do they have that kind of information? The representatives of the Department of Health might answer first.

Mr. Greg Dempsey:

I will answer the last question first. A key input into Sláintecare and the regionalisation of services is the ability to do population projections and within those projections to stratify by gender, social circumstances and health needs. From that we can work out the health needs and how they can be provided. We then budget on that basis. We are working on that. We are also developing a health system performance assessment framework which will give a view of the whole of the health system. What are the inputs, the money and the staff? What are the outputs and the activity being done? What are our fixed resources, premises and models of care? Then, what are the outcomes? It will measure outcomes generally, but also specific outcomes. That is all a move to better understand where we invest and what the outcomes are.

Dr. Anne Barry-Reidy:

I add a small point on the national healthcare policy. One of the strategic strands of the policy is oral health evaluation. In the policy that was developed we looked at the existing studies that were available such as IDS-TILDA which has since been updated. There was also a level of commissioning of research. Those are all snapshots at a particular time. We will continue to use surveys such as that. In future, for all additional services that are developed and rolled out, the intention is to have an element of gathering of data from people who access services in relation to their oral health. Eventually we should have structures in place to look at that data on a national level, both to understand if the roll-out of new services is improving oral health in the way we expect it will, and also to continue to support the development of future services in having a rolling modernisation of the service.

The policy was developed by the chief dental officer in the Department. It is strongly orientated towards public health principles. One of those key principles is to have built-in evaluation and surveillance. We are gathering that data and it is informing how we monitor and develop services.

Dr. Rosie Gowran:

The Cathaoirleach mentioned nothing about us without us. The HSE is moving to engaging people, particularly with the development of the patient forum. There was a conference recently on engaging people with disabilities and patients in relation to access to the health services more generally. We also have the disability services quality improvement office which works with people. It recently held its conference, a national share day, which was related to the decision-making Act and looking at how to support people to access their will and preference, make their decisions and be supported in the right way. That involved people with disabilities across the life course on issues such as opening a bank account and moving to independent living while being supported through the decision-making office and supported through the services. It was a real showcase of how this is working well and engaging with people with disabilities.

I mention the work IDS-TILDA is doing in Trinity College, not only producing good research and evidence and making recommendations, but also engaging with people with intellectual disability in the process of co-design and developing resources and plans for implementation. As part of the clinical programme for people with disabilities, we work in partnership with it to look at how we can utilise the resources it has developed and co-produced with people with intellectual disability to actually implement some of the recommendations it made.

Regarding the clinical programme and engaging with people we have an interdisciplinary engagement. We are working with health and social care professionals, people working in medicine and nursing, also the disability organisations and people with lived experience. We are setting up subcommittees across the life course looking at children's services, young people's services, services for adults and services for older people. It is interdisciplinary, not just looking at discipline specific involving the key stakeholders with expertise in the different areas. We are bedding those down at the moment.

We will have a programme of work in 2025. Part of the role of the clinical programme is to look at the immersion and embedding of the UNCRPD across the whole sector to create an integrated approach to engage people in understanding a rights-based approach to health and social care across the sector, across the Departments and so on. Part of my role is to link with all the stakeholders across different sectors to look at what needs to be done on education, accessibility and all the things that need to happen to ensure our health and social care services are rights based and accessible to all people. For people with disabilities and all the things that have been mentioned this evening on good healthcare, accessing healthcare on time, getting assessments on time and getting proper intervention, we need to ensure that we are doing those in a way that meets everybody's needs across the life course. That is critical in the role we have.

There is another factor there with education and training. The Cathaoirleach mentioned the concern over people dying younger and not accessing healthcare. I again refer to the IDS-TILDA work on health, access to screening services, access to oral health and all those elements. Some really important work needs to be done on education and training of all health and social care professionals and all people working in the sector. We need to look at how we can create a resource.

I can give an example from my own work as an associate professor in occupational therapy in the University of Limerick. I have done a lot of work on the provision of assistive technology for people with disabilities, particularly wheelchair service provision. In my previous role, I spoke to Government about the research I had conducted.

Part of the work that I have done is set up a postgraduate education programme for health and social care professionals and engineers, and a microcredential now, hopefully, for suppliers of wheelchairs to get the right information. That has been funded through Springboard, which is important in relation to people being able to access appropriate education and training for particular aspects of the work that they do. For example, we could look at that in relation to oral health and who needs to have that information and creating programmes because without that, we may think that people understand what the UNCRPD is, how to support people or how to communicate with people with disabilities. It is important that we do across-the-board information and training at different levels suitable within the sector for its entirety and engaging people with disabilities in that process to co-design appropriately in relation to that. That is really where we need to go in relation to developing services for people so that it is inclusive, it is rights based and it is access for all.

Michael Moynihan (Cork North West, Fianna Fail)
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We have a long road to go.

I thank them for being before us this evening. We appreciate it. We have a lot of challenges ahead but we will continue. I thank them for being here.

Sorry for the disruptions earlier. When we arranged it, there was no vote. Anyway, I thank them sincerely.

I thank the members as well for their dedication and, of course, our team here. We send our best wishes to one of our colleagues who is out today. I sincerely thank them for their time, effort and professionalism to the team. Well done. We will take it from there.