Catherine Connolly (Galway West, Independent) | Oireachtas source

I move:

That Dáil Éireann: notes:

- that Ireland signed the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2007 and ratified the UNCRPD in 2018;

- that, notwithstanding a commitment in the Programme for Government: Our Shared Future in 2020, Ireland has not yet signed or ratified the Optional Protocol to the UNCRPD, making Ireland one of just three European Union member states to have taken no action in this regard;

- that, pursuant to the UNCRPD, Ireland is obliged to ensure assistance to the caregivers of children and adults with disabilities; and

- the integral role that respite services play in the provision of assistance to those caregivers;

further notes:

- the unacceptable number of people on waiting lists for essential respite services;

- that carers have provided increased levels of care with less support and respite during the Covid-19 pandemic, and on an on-going basis this impacts on the wellbeing of carers and persons requiring care;

- the significant human cost for those affected by the closure of respite services as a result of the Covid-19 pandemic, and the on-going acute levels of unmet needs;

- that the Disability Capacity Review to 2032 identifies significant levels of unmet need for disability services, and changes in the size and age profile of the disability service population will add to unmet needs over the coming decade; and

- that the Disability Capacity Review to 2032 highlights that access to residential care has fallen since the 2008 recession, and supply did not keep up with population growth but actually fell;

furthermore notes that:

- the consequence of a failure to address identified current and future need is likely to be increased demand for crisis unplanned interventions, at significantly higher unit cost than planned services;

- if resources in areas like respite or home support continue to be focused on crisis situations, at the expense of supporting other families, the resilience of these other families will be undermined; and

- the Government's policy is supporting the provision of respite services in rented accommodation consequent on the absence of appropriate and sufficient capital funding for respite services;

recognises:

- the essential function of respite services in supporting family carers and the person with a disability, both in the home and in respite centres;

- the integral role played by respite services in our health and disability provision; and

- the work of those providing respite services and, in particular, the work of family carers, who save the State billions of euro every year in unpaid care; and

calls on the Government to:

- immediately reinstate all respite beds closed as a result of the Covid-19 pandemic;

- undertake a comprehensive audit of respite services, funded in whole or in part by the Health Service Executive, to establish the current provision of respite beds and the level of unmet need;

- as part of that audit, establish the level of provision of respite services in rented accommodation;

- provide the funding required to ensure on-going and sustainable capacity in respite services; and

- ratify the Optional Protocol to the UNCRPD.

I thank the Minister of State, Deputy Butler, for taking this debate and my colleagues, Deputies Pringle, Joan Collins, Harkin, Fitzmaurice and McNamara, for signing the motion. I do not anticipate that the Government will oppose it, but I am not sure. I have not received a copy of any amendment to the motion. The Minister of State is nodding her head, which I welcome.

I am not here in an argumentative mood or to fight. I am here chun an spotsolas a dhíriú isteach ar sheirbhísí faoisimh nach bhfuil ann, i ndáiríre, i nGaillimh agus is dócha nach bhfuil siad ann ar fud na tíre. Tá cuid de na seirbhísí ar fáil ach níl siad ar fad ar fáil agus tá éiginnteacht i gceist. Mar shampla i nGaillimh, de réir freagraí éagsúla tá sé leaba faoisimh i bPáirc Mhuirlinne agus tá dhá cheann sa Chlochán i gConamara. Braitheann sé ar an gceist a gcuirtear agus ar na freagraí a fhaighimid. Tá sé thar a bheith deacair, dá réir.

Is í mo m'fheidhm anseo inniu an spotsolas a dhíriú isteach ar an ábhar seo chun an fhadhb a aithint i dtús báire agus ansin chun réiteach a fháil. As I said, I am not here to argue. I am here to shine a spotlight on respite services. The motion is quite basic, recognising that we signed and ratified the United Nations Convention on the Rights of Persons with Disabilities in 2018 and highlighting that we have not yet signed the optional protocol to the convention. This makes Ireland one of just three EU member states that have taken no action in this regard. The motion notes our obligations under the convention, of which I am sure the Minister of State is aware. It further notes the unacceptable number of people on waiting lists for essential respite services. I will not go through the whole text. She has read it and has indicated she will not oppose it.

We ask the Government immediately to ensure all the respite beds that were in place before the Covid crisis are now functioning. Along with that, we call for a focused and comprehensive audit of respite services to be undertaken. I highlight the fragmented nature of the services I am asking the Government to audit. That audit should include establishing the level of provision of respite services in rented accommodation. This is an issue that has come up in Galway in a presentation by Brothers of Charity Services Ireland. That organisation has no capital ability to purchase buildings that are suitable for respite and is utterly dependent on the rental market. This factor has not been taken into account in any discussion on respite services. I will come back to it presently.

All of the statistics I refer to are taken from the national capacity review that was conducted in July last year. It looked at six areas, one of which was respite services. It is important to note that all of the areas the review considered are interconnected. It looked at residential care, adult day services, personal assistance and home support, multidisciplinary therapies, respite, and other community services and supports. I am zoning in on respite care but all the areas are interrelated, as noted in the review. There will be much more demand on residential services, for instance, if we do not provide appropriate respite services. Although I am taking one aspect in isolation, I acknowledge they are all interrelated.

Common to all six areas is that the demand is greater than the service capacity and that demand will continue to grow. The review points out this will have significant human costs. The only aspect in which I disagree with this is insofar as the future tense is not accurate. There already is a significant human cost to the failure to provide services. The report acknowledges that the current situation is absolutely detrimental to the resilience of families and their ability to keep going.

In chapter 8 of the review, dealing with respite services, the figures are startling. Fewer than one in four people with an intellectual disability and living at home with family, including only one third of adults, received any form of HSE-funded respite services in 2017. I understand the figures have got worse since then, going by the answers to my parliamentary questions. In addition, access to respite for people with a physical or sensory disability living at home was considerably lower than that. There is a substantial unmet need for respite. The allocation to cover the service is €16 million to €20 million a year, which seems to me a tiny amount of money. The important point the report recognises is that this significant unmet need has detrimental consequences for those requiring respite, including the people with a disability and those caring for them.

There is any number of reports I could refer to, which I usually do, but I will not refer to them today. The time has come when we must decide what we are going to do about this. The Minister of State, separate from her ministerial role, knows we in this House do our best to get answers by asking parliamentary questions over and over again. I have a bunch of such questions in front of me and I cannot make head nor tail of the responses I receive from the HSE. The latter talks about three agencies in Galway city and county providing respite services, but the executive is also an agent in this as a direct provider of respite services. In Merlin Park University Hospital, for example, there are currently six respite beds serving a city the size of Galway. Some responses I have received are more positive than others, indicating that there will be 13 beds by July or August or when the staff are in place. The situation remains that there are six beds in Galway city.

There are two respite beds in Clifden District Hospital. I am always reluctant to refer to a particular situation but, in this case, it captures the problem. The family in question has been told there is a space in Clifden, which is more than an hour's journey from the family home, for one week of respite, which family members have been begging for year after year. Other than this one week of respite, the family must look after the person who needs care. The answers coming back to questions on that family's situation lack any humanity. The response is that Merlin Park University Hospital is not suitable or there is no bed at this time and giving the contact details for Clifden hospital. There is no embracing the person who is doing the caring and no undertaking to provide some well-deserved respite for the loved one with the disability and the family. That is not happening.

The Minister of State has been to Galway to deal with another matter. There is language being used that serves to obfuscate, hide what is happening and make life difficult for people, when, in fact, we all want to ensure we have a better public health service. The problem is that services have been divided up and compartmentalised. I hope she will not state in her response that 10,000 hours are being provided per year. That does not mean anything. I cannot judge or analyse those figures. It would be great if I had a clear statement of what is required in Galway. The capacity review pointed to the unmet need but we have no idea what the provision is locally and whether it is proportionate to what is needed.

I spend my time reading information on this issue.

It would be easier to understand this if it was in a book written by Kafka, rather than being in a situation where we are trying to say sorry to a family for a bed not being available this week but assuring them that there will be one available at some stage. I cannot use any reassuring language like that. In addition, we then have the divisions in the system. In Galway, there three agencies involved, plus the HSE, as well as the private suppliers and operators of healthcare. It is difficult.

I will move to the answers I receive , what the people coming into my office are saying and the research being carried out. The Health Research Board states that its research is based on 65% of the service providers responding to it. I refer to the annual report on the national ability supports system, NASS. When I looked at this report, it tells us that 36,649 people were registered on the system. This represents only 65% of those in receipt of services. This means that NASS has inadequate data, and this is the system that has been set up to provide the data to allow the Government to make policy. These data are inadequate and we do not know why that is. Some service providers are returning information and some are not, and we have no idea why this is the case.

Turning to the renting of buildings, let us look at the presentation that all Deputies in Galway received, or certainly it was made available to them, just a few weeks ago from the Brothers of Charity, an organisation that has been on the go now for some 70 years. It referred to preventing carer burnout and the lack of funding for the provision of increased numbers of respite bed nights. The lack of respite services in Connemara was highlighted. That lack of services means that people must travel to the city centre to avail of respite care. Think of the impact that experience has on the person supported. Opportunities exist for this situation to be changed, but they cannot be availed of because the policy is to provide money for rent. A property has been identified in Connemara, but it is not possible to progress this initiative or there are certainly many obstacles to progressing it.

I refer to elements such as planning for the future, seeking our support, breaking down barriers to the provision of homes for people with a disability and enhancing access to capital funding for the purchase of residential and respite homes. I cannot remember the precise figure given for rented accommodation, but it was certainly striking. I will not try to repeat a figure that has gone out of my head, but it really jumped out because it referred to one tiny unit in Galway relating to a known developer or person. I refer to just renting one tiny unit, and this was just one example. I estimate that there are millions of euro going out every year to pay for rented accommodation in respect of which there is no security of tenure.

Another problem highlighted by the HSE and the agencies - and, in a sense, this is a positive one - is the inability to deal with this challenge as a result of the existence of standards and those standards being imposed. This is highlighted as being one of the barriers in this regard. I would have thought that was a positive challenge in respect of the necessity of raising standards. That must be done, however, alongside there being in place a Government policy that allows for capital funding to enable these measures to be carried out. As the disability capacity review points out, this approach is one that is, ultimately, costing more money. We are responding in an unplanned way. We have crisis interventions. We are breaking down the resilience of the families who are trying to provide this type of care more than 99% of the time. Those family members then end up needing care themselves. It is a vicious circle in the context of costs that are not justified and funds that should be going in at the beginning with proper services.

If the Minister of State has any influence at all with the HSE, it would be helpful if that organisation stopped the spin. It really would be helpful because the agency is there to serve, as I am here, and to use taxpayers' money to serve the people. We have a right to know how many respite beds are available in Galway city and county, and nationally. If those beds do not exist, then we must know precisely why and we also need to know about a plan for when they will be put in place. It is not okay to tell people that it will perhaps be in July, August or September, depending on which person is answering the question. The waiting lists from the agencies are truly shocking. I got an update yesterday, the longest day of the year, on respite days provided throughout the country, and I thank the HSE for that. It highlights that one of the problems is better regulation and that a significant number of respite beds have been used for long-term residential placements. This means that respite beds are going out of action because of the complexity and the age of the people presenting, who need more residential care.

All this was eminently foreseeable. Covid-19 was difficult, but we are supposed to have learned from the experience. We are supposed to be moving forward. If we look at the waiting lists that I have been told about in Galway, in addition to the six beds in Merlin Park, the two in Clifden and the two somewhere else that have not been identified, we have 66 beds provided by the agencies, such as the Brothers of Charity, Ability West, etc. Those beds are spread out. We have waiting lists of up to four years. I find it hard to accept that the lists have reached this stage. I have a breakdown of them, but it is too much to read out bit by bit. On one hand, I have a response from the HSE stating that there were five beds. On the other hand, when I look at the waiting lists, I see that children and adults are waiting anything from six months up to four years for respite beds. This information dates from a few months ago and I do not imagine the situation has got any better.

In addition to the spotlight on respite beds, I ask the Minister of State to commit in this regard. She seems to be doing so, if she is not going against this motion and is not seeking to amend it. I refer then to an audit being undertaken within a reasonable timeframe of all respite beds in the country and that the information in this regard be broken down by county. This audit should also show how those figures relate to the actual need which exists, given that the capacity review found there was substantial, significant unmet need in this regard. Ultimately, it is a much better way to go, in the context of value for money, to have a planned service on which people can rely.

When I looked at the opening section of the capacity review, I read the three introductions from the Minister for Health, Deputy Stephen Donnelly, the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, and the Minister of State, Deputy Rabbitte. The Minister for Children, Equality, Disability, Integration and Youth acknowledged our obligations under the UN convention. He then made an interesting point regarding the need for certainty or predictability in his overview. We do not have any of that now. We have a completely ad hoc, fragmented and disjointed service that is not at all based on right. Therefore, I appeal to the Minister of State in a spirit of collegiality for us to work together because this is an essential service. For families to get respite care is the most basic service. This is not happening now.

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