Speech on Disability Day Services

11 November 2020

Ivana Bacik

 

I welcome the Minister of State, Deputy Rabbitte, to the House. I thank her very much for giving us such a clear overview of the position on disability day services. I also thank her for her appearance before the Joint Committee on Disability Matters last week. It is very welcome to have such opportunities to debate with her the provision of services.

 

I acknowledge the importance of the Minister of State's statement that the provision of disability services is regarded as an essential public service. That is very much welcome. We acknowledged previously how important that is. I also acknowledge, as the Minister of State did, the immense work of both the HSE and service providers to ensure the continued delivery of safe services to person with disabilities. Notwithstanding that, the Minister of State also acknowledged there is still immense frustration among persons with disabilities and their families because services have simply not resumed to pre-Covid levels. I know the Minister of State is well aware of that and indeed she pointed it out herself.

 

Even before Covid-19 hit, day services were in the news for the wrong reasons, with service providers pleading for increased resources even at that point. In particular, service users were critical of the introduction of prohibitive transport fees for people travelling to day service facilities and people were left without sufficient provision on a temporary basis because of funding shortfalls or capacity challenges. All of that was the case, as the Minister of State well knows, prior to Covid-19, but clearly Covid-19 represented an inordinate and unprecedented threat to the continuation of disability day services.

 

I welcomed initiatives taken by the Government and the Minister of State, since taking up office, for example, the funding announcement of €10 million specifically for day services. That was very welcome. Nonetheless, the frustration continues and the level of provision, unfortunately, still remains far too low to meet the real needs of persons with disabilities and their families. I have been in regular contact with the Minister of State's office about a particular case in my area concerning a boy who really does need to be in school full time, and he needs the support to do that. I know that it is a somewhat separate issue but I will continue to make representations on his behalf to the Minister of State.

 

I also wish to raise with her today a particular case that, again, would be known to her, that is, the case of Philip Kelly. He and his family have given permission for their names to be used. They have been campaigning for some time now for the resumption of day services. Philip has Down's syndrome and in normal times he attends day services for seven hours a day, five days a week. Like many others, he and his family went without day services and respite care during the strictest lockdown and even now the service has only been partially restored. Neither he nor the staff who work with him know when he will be able to build up his hours again. The service is extremely careful in terms of the provision of a safe service, yet the service is just not fully available. That is one example in my area in Dublin of the sort of frustrations that are experienced. The frustration of families and staff is immense, as they do not know when they can resume services in the normal way.

 

It is clear that there is a need to help facilities with adaptations to facilitate social distancing and to ensure safe and hygienic facilities. Sometimes facilities kept service users outdoors during the summer and autumn but that becomes more of a challenge going into the winter. Many families feel it is a continual battle to try to achieve the necessary services. The knock-on effect where the services cannot be continued or where they are only being provided in a reduced way is very clear to anyone who knows anyone with a disability, who has been dependent on the facilities. There is a serious impact on mental health and progress. I have heard in my office - I am sure that is also the case with others in the Chamber - reports of individuals who have regressed because of the lack of provision of day services. This is a serious issue for young adults and older adults alike. Key developmental milestones are being missed for young children with disabilities without important intervention such as speech and language therapy and physical therapy. It is a matter of grave concern to all of us that we are seeing this level of regression because of the knock-on effect of the crisis.

 

Carers too are being severely impacted. One carer who contacted my office said it felt as though a lifeline had been taken away by the removal of day and respite services. That is not an unusual description of the impact. The transition to working from home has been burdensome generally for many people across the State, but for those with additional caring responsibilities arising from the reduction in day service hours, this is particularly hard. Family Carers Ireland published a survey on caring through Covid. I know the Minister of State is well aware of it. The results pointed out that 60% of carers who responded reported that they worried about a decline in their own mental health and well-being as a result of the increased care burden during Covid.

 

Previously, in contributions on the issue I invoked the mantra of "build back better". That is really what we need to see happen in the disability services sector, in particular in the provision of day care services.

Inclusion Ireland's report from July of this year on day services pointed out certain priorities for the Government in terms of our exit strategy from Covid restrictions. They include the timely reopening of day services, the full restoration of services and supports in line with new directions, funding for Covid-19 adaptations, access to therapy and respite services and, above all, that the voice of the service user is central

I welcome the Minister of State, Deputy Rabbitte, to the House. I thank her very much for giving us such a clear overview of the position on disability day services. I also thank her for her appearance before the Joint Committee on Disability Matters last week. It is very welcome to have such opportunities to debate with her the provision of services.

I acknowledge the importance of the Minister of State's statement that the provision of disability services is regarded as an essential public service. That is very much welcome. We acknowledged previously how important that is. I also acknowledge, as the Minister of State did, the immense work of both the HSE and service providers to ensure the continued delivery of safe services to person with disabilities. Notwithstanding that, the Minister of State also acknowledged there is still immense frustration among persons with disabilities and their families because services have simply not resumed to pre-Covid levels. I know the Minister of State is well aware of that and indeed she pointed it out herself.

Even before Covid-19 hit, day services were in the news for the wrong reasons, with service providers pleading for increased resources even at that point. In particular, service users were critical of the introduction of prohibitive transport fees for people travelling to day service facilities and people were left without sufficient provision on a temporary basis because of funding shortfalls or capacity challenges. All of that was the case, as the Minister of State well knows, prior to Covid-19, but clearly Covid-19 represented an inordinate and unprecedented threat to the continuation of disability day services.

I welcomed initiatives taken by the Government and the Minister of State, since taking up office, for example, the funding announcement of €10 million specifically for day services. That was very welcome. Nonetheless, the frustration continues and the level of provision, unfortunately, still remains far too low to meet the real needs of persons with disabilities and their families. I have been in regular contact with the Minister of State's office about a particular case in my area concerning a boy who really does need to be in school full time, and he needs the support to do that. I know that it is a somewhat separate issue but I will continue to make representations on his behalf to the Minister of State.

I also wish to raise with her today a particular case that, again, would be known to her, that is, the case of Philip Kelly. He and his family have given permission for their names to be used. They have been campaigning for some time now for the resumption of day services. Philip has Down's syndrome and in normal times he attends day services for seven hours a day, five days a week. Like many others, he and his family went without day services and respite care during the strictest lockdown and even now the service has only been partially restored. Neither he nor the staff who work with him know when he will be able to build up his hours again. The service is extremely careful in terms of the provision of a safe service, yet the service is just not fully available. That is one example in my area in Dublin of the sort of frustrations that are experienced. The frustration of families and staff is immense, as they do not know when they can resume services in the normal way.

It is clear that there is a need to help facilities with adaptations to facilitate social distancing and to ensure safe and hygienic facilities. Sometimes facilities kept service users outdoors during the summer and autumn but that becomes more of a challenge going into the winter. Many families feel it is a continual battle to try to achieve the necessary services. The knock-on effect where the services cannot be continued or where they are only being provided in a reduced way is very clear to anyone who knows anyone with a disability, who has been dependent on the facilities. There is a serious impact on mental health and progress. I have heard in my office - I am sure that is also the case with others in the Chamber - reports of individuals who have regressed because of the lack of provision of day services. This is a serious issue for young adults and older adults alike. Key developmental milestones are being missed for young children with disabilities without important intervention such as speech and language therapy and physical therapy. It is a matter of grave concern to all of us that we are seeing this level of regression because of the knock-on effect of the crisis.

Carers too are being severely impacted. One carer who contacted my office said it felt as though a lifeline had been taken away by the removal of day and respite services. That is not an unusual description of the impact. The transition to working from home has been burdensome generally for many people across the State, but for those with additional caring responsibilities arising from the reduction in day service hours, this is particularly hard. Family Carers Ireland published a survey on caring through Covid. I know the Minister of State is well aware of it. The results pointed out that 60% of carers who responded reported that they worried about a decline in their own mental health and well-being as a result of the increased care burden during Covid.

Previously, in contributions on the issue I invoked the mantra of "build back better". That is really what we need to see happen in the disability services sector, in particular in the provision of day care services.

Inclusion Ireland's report from July of this year on day services pointed out certain priorities for the Government in terms of our exit strategy from Covid restrictions. They include the timely reopening of day services, the full restoration of services and supports in line with new directions, funding for Covid-19 adaptations, access to therapy and respite services and, above all, that the voice of the service user is central.

Róisín Garvey

Senator Róisín Garvey

I welcome the Minister of State, Deputy Rabbitte, to the House and congratulate her. It is great to see fresh legs for this new challenge we face because it is a tough one and there is a long legacy behind her. I wish the Minister of State the best of luck with the challenge she faces.

As she is very aware, day services provision was closed down, or limited to a skeleton support during the first lockdown. Since July, day services were reintroduced on a phased basis. I am delighted to hear the Minister of State refer to day services as an essential service. I hope that means that from today all the service providers will provide the full service they were providing pre-Covid. Let us see how that works out, as that is what everybody wants.

At present, the services remain patchy to say the least. Many adult service users are still not back in any day service, despite a clear commitment from the Government on a national level. Unfortunately, this has not always translated to the local level. Equally, several of the service users who are back are only getting a limited service, that is, a few days per week. We ask the Minister of State to urgently address the anomalies.

Several service users are adults with complex needs requiring hands-on support 24-7. Some of my friends have adult children with disabilities. It is hard enough to be a parent, not to mention the parent of a child with a severe disability and no supports. Cases are now documented of parents working fewer hours in their own jobs as they do not have additional support to ensure their adult children have appropriate care while they work. Other carers indicate they are suffering severe stress and burnout, as they have not had any real break for weeks or even months.

Carers also report increased stress, anxiety and inappropriate and agitated behaviour in their adult children who do not understand why they are not getting the services that are built into their routines. Families also report additional stresses among siblings and other family members because it is stressful for them as well. Some siblings are trying to study for their leaving certificate or trying to do other things in the house. It is an issue for the whole family, not just for individuals.

Dr. Susan Crawford has the patience of a saint. She started the first autism unit in Clare 22 years ago. Just a few weeks ago she was in the High Court, still fighting for services for her son. During Covid he went into repeated fits and catatonic states. She is still fighting 25 years later. It seems like every parent is left fighting for the services even though we know on a national level they are being provided and funded. Something is wrong. The main issue seems to be the lack of communication or joined-up thinking. Even if it is on the HSE hub that the services are available, they are not always there on the ground. Something is not right. I do not know the reason for the gap but it seems more like an abyss than a gap because the money is being provided and the workers are in place. I do not know what the solution is. Unfortunately, I am putting it back on the shoulders of the Minister of State. In the case to which I referred, it is difficult to think that 25 years on, every time a new issue arises with her child the mother has to go and fight it. Money is being wasted in court. We must find a better way.

From the telephone calls and emails I have received it seems there is a lack of communication and clarity as to what is or is not available. The one thing worse than knowing one is not getting it, is not knowing what one is getting or when one is getting it. That adds another level of stress. I seek clarity specifically on when the services will be reinstated in County Clare. If there is a difficulty for service providers, is it due to staff shortages or Covid restrictions? If that is the case, how will we establish these services?

In such situations, why has the HSE not stepped in to fill the breach with emergency staff if it needs to be done? We have seen that this has happened in nursing homes. Similarly, if the premises is not available to deliver a service due to Covid-19 restrictions, why are home care packages not created and put in place?

This issue comes up a lot with the disability sector. It is not just about empowering the individual - this is to do with empowering the families. If there are moneys available for the service providers and they cannot provide the service, should the money not then be available to the family itself to find carers? This has come up before for people who are adults and are capable of managing things themselves. It is a hand-up, not a handout. It is good for people to be empowered. If the service cannot be provided, maybe the family can be resourceful with the money that is there. The Minister of State has inherited a huge issue in this area but if any woman can sort it, she could be the one.

I would like to mention another aspect of this matter while the Minister of State is present and we are talking about disability. In my previous job, I worked for 14 years to get people out of cars and to promote sustainable transport. However, there is a huge issue around accessibility for people with disabilities who seek to move around our villages and towns independently. A lot of people with disabilities have the same needs as all the rest of us and they want to be independent. Sometimes they are really restricted due to a lack of pedestrian crossings, or because steps are too high, there are no ramps for wheelchair users or paths are too narrow.

I urge the Minister of State to consider that there may be a need for the Department of Health to engage with the Department of Transport. Engineers are great but they are thinking about cars and roads a lot of the time. People in the disability section of the Department would be able to reprioritise that and look for universal access. The designs have to include that. Lots of people with disabilities cannot drive but they can walk. However, they can only do so if they have safe infrastructure. There are some cases where the pedestrian crossings could be 1 km apart within a town. Disabled people cannot cross the road so they are restricted and they cannot go anywhere unless they get a lift. They are the same as the rest of us and they want to be independent. It would be great if there could be cross-departmental work on that issue.

I wish the Minister of State the best of luck and I thank her for all the work she has done so far. She is not in her job long but I have faith in her and I hope we can provide the best services in Ireland. I will support the Minister of State in any way I can to help her.

Lynn Boylan

Senator Lynn Boylan

I welcome the Minister of State and I congratulate her on her appointment. We know and we can all agree that this pandemic has caused huge disruption to the lives of people with disabilities, especially those who avail of day services. Many day service centres were totally shut during the first months of the lockdown and while they are now open, they are, as the Minister of State has admitted, at a much reduced capacity. This is simply unacceptable. Day services are a lifeline for our citizens with disabilities and for their families. These essential services provide support, routine and respite. The Government must provide the resources to allow the full reopening of day services for people with disabilities who avail of them.

The people who depend on these services have suffered disproportionately from closures. Inclusion Ireland, which was cited by Senator Bacik, carried out a study in July on the impact of the closure of day services on people with intellectual disabilities. A significant number of respondents reported increased loneliness and anxiety and an increase in challenging behaviour or anger. We do not know what the long-term impact will be on the people who rely on day services. Inclusion Ireland has also carried out a follow-up survey to the one it did in July and that will be published next week. Some of the headline findings make for stark reading. In terms of service loss compared to pre-Covid-19, 11% lost four days; 36% lost three days; 24% lost two days; and 5% lost one day. That means over 60% of people are being asked to make do with two to three days less than they are used to. Is this the height of the Government’s ambition? I know it is challenging for everybody but those statistics tell us that the reopening has also been unequal.

We commend the service providers who are doing their best with inadequate resources. The Government is placing the responsibility on the shoulders of the service providers to make some very tough decisions. They have scarce resources and are being asked to decide who deserves them and who does not. These are impossible choices for people to make. I know the Government will probably say that Covid-19 means we just cannot provide full day services and that we are in extraordinary times. I remind the House, however, that this excuse did not wash when it was time to find the resources to open the schools. In August and September, the Taoiseach said the priority was to keep the schools and colleges open and that everything would be done to achieve that. I ask the Minister of State why it has to be different for people with disabilities? Where is the commitment to find the resources to overcome this? This is discrimination.

In October, Sinn Féin brought a motion to the Dáil and called for the Government to allocate enough resources to bring those essential services up to pre-Covid-19 levels. That means allocating for extra staff, physical facilities and transportation to facilitate social distancing. We are still hearing - and I know everybody's inbox is full from constituents contacting them - that some day services cannot provide transport and that where the person with disabilities cannot make his or her own way, he or she is just shut out from the service.

During the last economic crisis, and I know the Minister of State was not in government then, it was the vulnerable who bore the brunt of austerity. While this year’s budget saw an absolute increase in provision for disability services, which is welcome, it was not enough to meet the challenge of providing full day services. The last time, disability interest groups and providers had to protest outside the House on Kildare Street. Once again, in this crisis, it is the most vulnerable who again bear the cost, only this time they cannot protest. The impact of the cutbacks is being acutely felt by the people impacted. Again, the figures from the Inclusion Ireland survey are harrowing and should alarm the Minister of State. They found that 93% of respondents felt their ability to participate in the community was worse or much worse; 88% had a lower quality of life since services were cut; 47% had a lower mood; and 34% were more withdrawn. Those statistics are deeply concerning and will have a lasting impact on the people who are affected.

We welcome any increase in funding for disability services in the budget but we would like the same attention to be given to disability day services as is being given to education.

Lynn Ruane

Senator Lynn Ruane

I thank the Minister of State for being in the Seanad and I congratulate her on her appointment to this crucially important role.

I welcome the establishment by the Oireachtas of the Joint Committee on Disability Matters, which shall have within its remit the monitoring of the implementation by Ireland of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. However, I hope that this commitment will be matched as soon as possible with the ratification of the optional protocol to that convention to allow for those with disability to make individual complaints to the UN. It is a massive shame that the optional protocol was not activated when the convention was ratified by Ireland in 2018 and it was a failure of the previous Government not to do so. The UNCRPD has to be rigorously implemented and enforced to be meaningful. The optional protocol is the most important instrument in this respect. Could the Minister of State please outline in the House the timeline for the ratification of the optional protocol?

It is estimated that around 13% of people in Ireland are living with a disability, with thousands of people using day services in almost 100 locations. Whether someone is attending day services for an intellectual disability or a physical disability, there is a real lack of options for people when accessing a day service that they choose or need. At the foundation of life for many people living with a disability is a desire to live well, do ordinary things and have agency over their lives. Day services are at the heart of creating and facilitating those structures to support this being a reality.

I recently read the New Directions report, which emphasised the goals and objectives of people attending day services in Ireland and what should be available to individuals accessing services. These include making choices and plans; creating transitions and progression; inclusion in one's local community; access to education, training and work; maximising independence; health and well-being; personal and social development; personal expression and creativity; having meaningful social roles; and influencing service policy and practice.

To be a functioning society for all and when providing human services, there must be accountability, accessibility, affordability and quality assurance in all we do as a State in service provision. To achieve this, it is a must to continuously increase funding and ensure high-quality services underpinned by best practice and human rights. People must be central to this and this includes how services look during a pandemic. Covid-19 has had a disproportionate impact on those with a disability. It has impacted the direct delivery of services and access to healthcare and education and has had visible effects like the impact of further social isolation, disconnection and marginalisation arising from the national lockdowns. As we consider the impact on day services as we emerge from Level 5 restrictions in a short few weeks, we must be conscious of the reality as a society and as the economy reopens.

In light of former Senator John Dolan's legislation in the last Seanad that looked at changing facilities and accessible playgrounds, I thought about the messaging around lockdown. We have been encouraging people to get out but we still do not have accessible disability-friendly playgrounds for people to get out to during a pandemic. This is something we definitely need to look at and I hope to pursue and progress the former Senator's Bill in the next Seanad. It was returned to the Order Paper.

When I think about placing the individual at the centre of his or her care, be it a day service or residential setting, I think of a young man I have recently been supporting named Thomas Oonge and his family. He has been in a residential service for a long time called St. Catherine's, which has done outstanding work with him with regard to his ability, agency and personality. It involves getting out for walks and attending Croke Park recently, which would have been unheard for him previously. However, once Thomas turned 18, there was a threat to move him to a different facility, which goes against keeping him at the centre of his own care given that he has been in this residential facility for most of his life and it has achieved a huge amount of progress in his life. I can send on the details of Thomas's family to the Minister of State because cost seems to be the issue raised most frequently in respect of keeping him where he is. It is crucial that he stays where he is for his own well-being.

I wish to highlight a need for funding in intellectual disability community-based residential services. People with an intellectual disability and mental health difficulties who are living in the community without family support are extremely vulnerable. There are currently no residential community placements available. I also wish to encourage discussion on the realities of adults living with intellectual disabilities in Ireland and their need for community integration, relationships, tailored therapies and meaningful goal-directed activity, which, as it stands, is not being met.

Independent Living Movement Ireland also argued that for disabled people, the language and discussion around disability often reverted to a medical view of disability. Persons with disabilities are consistently seen as high-risk regardless of their impairment and cocooning was imposed on some individuals removing their agency and choice as independent adults. The continued exclusion of disabled persons' organisations from policy development discussions and the exclusion of disabled persons' voices from the debates that affect their lives are highly problematic. Will the Minister of State ensure that disabled persons' organisations are represented at policy discussions regarding disability services and will she commit to listening to the voices of disabled people in order that their rights and dignity are respected?

Fiona O'Loughlin

Senator Fiona O'Loughlin

I thank the Minister of State for coming to the House to discuss the reopening of day services in the disability sector. I believe people with disabilities and their families have arguably been one of the sectors most disadvantaged by Covid. The closure of disability services in March took away a lifeline for many people and families. There have been very disturbing repercussions for users and their families. I refer to the survey carried out by Inclusion Ireland. I pay tribute to its outgoing chairperson, Lorraine Dempsey, who has done amazing work. When she described how service users were talking about their feelings about not using day services, she used words like loneliness, worry, anxiety and anger. Having a plan for service users is hugely important. Regarding family members and carers, sadly, there was an increase in challenging behaviours. This has been very difficult. The fact that no respite was offered during that period - there are delays in getting back into a regime of respite - is difficult for many families on many different levels. I ask the Minister of State to treat this as an urgent matter.

In the constituency in which I live, the services provided by KARE, the Muiriosa Foundation and Camphill Communities of Ireland are critical in catering to the needs of people with disabilities from Kildare, west Wicklow and parts of east Offaly. The loss of this service has been very difficult to deal with. The lack of stimulation experienced by many service users has led to a very sad regression that it will take years to get back, if ever. The reopening is welcome but at the moment, the highest rate is about 40%. I know the Minister of State talked about getting to 50%, which is welcome, but it is hugely important.

I have raised the redeployment of staff from the disability sector with the Minister of State a number of times. Children losing these disability services leads to regression. We cannot see these children being abandoned, as is the case at the moment. I acknowledge the significant efforts made by disability services staff in upskilling and providing outreach but at the same time, one to one is what we want. I wish to raise the ongoing inequity relating to pay between staff in section 38 and section 39 organisations, which is completely wrong. We need equality of pay and to value those who work in each of those sectors.

I have spoken to the Minister of State about the voluntary sector. I am talking about local clubs like the Special Olympics and local Down's syndrome clubs. The Minister of State spoke about the investment coming from her Department, which is very welcome. Some of those other services that are being provided also need to be given the supports they need.

Malcolm Byrne

Senator Malcolm Byrne

It is good to see Senator Currie in the Chair. I note that I am the first male speaker in this debate, which is a message that needs to be sent out from this House. I encourage more of my male colleagues to come in and speak on this issue. I am particularly happy the Minister of State is in this brief. She has a real interest in and empathy for it. I know she visited a number of centres in County Wexford, particularly St. Aidan's in Gorey, which is close to my own heart. The people there extend their thanks to her for her achievement in the budget and some of the progress that has been made. As a Minister of State, she has put her money where her mouth is. She is investing and addressing the issues.

I echo the comments made by Senator O'Loughlin about the pay differential. It is wrong that pay in those voluntary service providers is behind pay in the HSE in spite of the fact that the staff are doing the same work. The problem is that many staff in voluntary day service providers are on 2010 scales rather than 2020 scales. Since 2013, the HSE has not increased the pay scales for those in voluntary service providers. This means that these service providers must spend a lot of time on fundraising.

Another crucial related issue is that we need to address early intervention, particularly in speech and language therapy, and assessment from a very early age, that is, preschool age. This is an essential support for disability services.

I agree with Senator Ruane. Although I know the Minister of State is championing this, it is really important that the voices of those with disabilities are heard when it comes to disability services. I know the Minister of State is championing this and has put mechanisms in place, but in all of our decisions in this, it is absolutely essential that this happens.

Martin Conway

Senator Martin Conway

As the second male speaker on this matter, and now that I think of it the only Member of the House actually with a declared disability, I welcome the Minister of State, Deputy Rabbitte, to the House and congratulate her in her new role. Having been around the Houses with the Minister of State for the past number of years I have seen her commitment to equality of opportunity for all people. The Minister of State's particular appointment to this role will be critical going forward because of her deep level of commitment, understanding and knowledge.

I agree with a lot of what has been said so far about the reduction in day services. To be fair, looking back at last April and May we were in a situation and were dealing with something we had never dealt with before as a country. Day services had to close to protect people with disabilities who used those services and the staff who care and support them so well.

As we move on in the journey through this awful disease a good few services have been restored, but not all. Certainly they have not been restored to the capacity they were pre-Covid. This, unfortunately, is a pity. Then again, it is grounded in the right reasons, which in the first instance is to keep people safe. As we learn to live with the virus, pending a vaccine, we will have to look at scaling up as much as we can in a safe way.

I have spoken with some families where the service is being provided, but where there is significant community transmission of the disease they have chosen to keep their family members at home and not send them to the day service. This is happening and is happening a lot more than people realise. It is not being articulated. I always like to try to be fair and bring balance to the discussion. I know that everybody involved is trying their best and they recognise that day services are critically important to the mental health and the development, including participation within communities, of people with disabilities. Equally, it is as important to the people who love them, care for them and who support them: their families, their communities and their friends. The full participation of people with disabilities is good for their families, their communities and for society. Most importantly, it is good for the person with the disability.

With regard to section 39 organisations I believe they need to be reviewed. We need a root and branch review on the funding of section 39 organisations. Some section 39 organisations' turnover is 90% or 95% funded through the HSE but there are others with a lot less than that. The National Council for the Blind of Ireland, for example, which is the national organisation that supports 270,000 blind and visually impaired people in the State, is 70% funded. It must rely on fundraising for the other 30%. Other equivalent national organisations are on 90%. That is probably a simplistic view on section 39 organisations. Their roles, how they deliver their services, and how the State gets value for money through them, all need to be examined and looked at going forward.

I acknowledge the Minister of State's predecessor in this role, former Deputy Finian McGrath. I worked tirelessly campaigning for the first step - as I would see it - in the ratification of the UN Convention on the Rights of Persons with Disabilities. Great momentum was brought to that by the election of Deputy Leo Varadkar as Taoiseach and the appointment in 2016 of former Deputy Finian McGrath as the Minister of State sitting in Cabinet with specific responsibility for disability. It was good to see the convention ratified and I very much welcome the oversight committee that has been established by the Oireachtas to monitor its implementation. I absolutely agree with my colleague, Senator Ruane, on the protocol, which needs to be dealt with.

People who have a disability in Ireland need a level playing pitch and supports. The way a level playing pitch is created in the State is by ensuring the supports are put in place. When the supports are there all of society, not just people with disabilities, achieves its potential. It is a sad reality that some 80% of people with a disability find it difficult to get employment. That is well above the EU average. In Europe I believe it is 60%. We have a lot of work to do.

It is only correct to say that work has been done, the foundation has been set and the commitment is there. With the Minister of State, Deputy Rabbitte, working with the Ministers, Deputy O'Gorman and Donnelly, and with the committee, I absolutely believe that when this term of Government ends we will be in a far better space with supports for people with disabilities in the State. I wish the Minister of State well.

Acting Chairman (Senator Pat Casey)

I am conscious of time, and the Minister of State must come back in. Will the final three Senators agree to five minutes each? Is that agreed? Agreed.

John McGahon

Senator John McGahon

Five minutes is more than enough. I would just like to make a couple of points, my remarks will be brief. I spoke to some parents yesterday in preparation for and anticipation of this debate, to get a fuller sense of some of the issues they are facing. I will talk about some of the issues today. The common theme I got from a number of parents yesterday is, essentially, that every single child is unique and different, as we all are, with their own personalities, wants and needs. At times we have a tendency to take a one-size-fits-all approach. Perhaps this is not the right approach, even at the best of times. Every child must be assessed as an individual, based on his or her own individual needs. I spoke with a wonderful parent yesterday who told me that there needs to be a child-led, progressive plan, and not looking at one disability and saying they all fit under one umbrella. This is the biggest issue, and one on which I believe we can all agree. The children may have the same disability on paper, which places them under that umbrella, but every child is completely different and every one has his or her own personality and unique way.

The second of my three points is that early intervention is crucial. The sooner one can start working with the child the better the outcome for the child and the family. Currently, however, there may be a two- or three-year waiting list to get that first initial assessment. While I do not want to use the word "damaging", those three years can be strain on families, a time which could be used to make life better for them. The parent I spoke with suggested that after the initial assessment there should be a follow-up assessment six month's later and then ongoing assessments, as the needs of young children can change dramatically in that period.

A professional in the sector from my own county of Louth, has told me that one of the biggest issues they faced in recent months was the number of highly experienced service providers such as occupational therapist and physiotherapists who were brought over to work in contact tracing for Covid-19. While that might have been acceptable at the start of the pandemic it is not acceptable now. We should be moving those highly qualified people back to do the jobs they are trained to do. We can train up new people for contact tracing to carry out that important task.

I also spoke with a parent from north Louth, right on the Border. My colleague there, Senator Erin McGreehan, will agree with me when I speak of the distances involved. If a family are from Omeath, for example, or from somewhere along the Border area, the nearest autism spectrum disorder unit is a 25 minute drive to Bellurgan National School, which only has between six to nine places. The next nearest drive is to Réalt Na Mara National School in Dundalk. If a family lives anywhere along the Border region in north Louth they would travel a considerable distance to get to the next unit. At some stage in the near future I would love to see a focused increase in providing more ASD units in rural areas such as in the parts of County Louth I have mentioned.

It is also worthwhile to consider making sure carers are given the same allowances for PRSI as a person actively working in the community. In many situations people give up full-time or professional careers to become full-time carers, and they should be treated in the same way and are entitled to do so with the same financial supports.

Finally, I was delighted to be put in touch with a lady from County Meath yesterday, Tracy Carroll, who some Members of the House may be aware of or have already encountered. She is a tireless advocate for children with disabilities. After giving birth, Tracy was sent home with Willow and, essentially, palliative care. It was said it was extremely unlikely that Willow would survive the following two weeks. Willow is now two years of age. While she requires 24-hour care and attention, it is an example of the type of care that must be included. One can see the innocence of things through the eyes of children. Willow has a four-year-old brother, Noah, and he refers to his baby sister as a magic fairy elf. She arrived on 1 December and that is the date in that house when the magic fairy elf comes along. Is it not wonderful that the innocence of a child makes him or her look at it in that way? That really struck me. Children with disabilities deserve their childhood as much as any other child, and we must try to implement that as much as possible.

Aisling Dolan

Senator Aisling Dolan

I welcome the Minister of State from the west, Deputy Rabbitte. I wish to pay tribute to what has been done. Many people in the primary healthcare service have been working non-stop on the front line on Covid as well. In community healthcare organisation 2, CHO 2, covering Galway, Mayo and Roscommon, which the Minister of State knows well, one sees amazing work being done by Ability West and the Brothers of Charity in this area. I am pleased that all stakeholders, including Inclusion Ireland, were brought together in the framework for the resumption of day services. I pay tribute to the Minister of State for achieving extra funding for the extra day in-services, as well as the extra €100 million for disability.

There was a huge impact on families and carers, who are on the point of exhaustion, when the day services closed. There is no access to respite care, so it is great to see that this will happen. It was a relief to see so many of them opened in the third and fourth week of August. I appreciate the document that was uploaded onto the website with that detail. Almost 19,000 people with disabilities access these services across 1,000 buildings and premises. The Minister of State mentioned the importance of attendance at gyms and swimming pools. In the west we fought to ensure there is funding available to keep swimming pools open in both Tuam and Ballinasloe. We know the importance of physical therapy for people with disabilities. Swimming is for all ages and all abilities. Cross-departmental support is crucial in delivering what is needed for people with disabilities, such as working, perhaps, with the Department with responsibility for local government to ensure these amenities will not be lost in regional areas. Regional areas are crucial.

I have been speaking to providers locally and they are happy to see the funding for temporary posts. However, I was asked questions about funds to modify buildings to comply with public health guidelines. This involves many different types of buildings, being able to bring people in and the spacing between them. There is also the issue of funds for transport. More than 8,000 people use transport to get to many of the disability service providers. CLÁR is examining this as well, but what other funding has been allowed for transport?

The report from Inclusion Ireland of last June was mentioned by the Minister of State and Senator Ruane. It referred to 55 people with intellectual disability and discusses how people would be able to use technology if services or equipment were available. That was 80% of the 55 surveyed. Obviously, it is a challenge for those who are non-verbal, but we will be delivering services in a different way. Again, loneliness, anxiety and exhaustion came across, as well as access to therapy support, such as speech and language and occupational therapy. I have some questions for the Minister of State. What is the current allocation of staff in CHOs to Covid testing and tracing? Second, there is the timeline for the personal plans that are put in place for each of the users. It is a person-centred plan and includes what is required medically. What is the timeline for when that might be delivered? What funding is available for transport? If that information is not available, the Department might be able to provide it.

There is increased funding for home supports. It is wonderful to see the extra 5 million hours for home care, and to see a little increase in the disability allowance. However, we might need to look at that again because more families at home are trying to provide support to users. I was impressed by the total budget of €2.22 billion, which is definitely unprecedented. Regarding the background from Health Innovation Hub Ireland, I am anxious to see how this technology is being used. How are we linking in with eHealth Ireland here? Given the backlog in services such as occupational therapy and speech and language, how will we ensure that people get access? We need to be able to use technology, along with funding, to deliver these services, particularly Telehealth, Telecare, eHealth and Digital Health. I am not speaking so much about intellectual disability as people with physical disabilities.

It is important to be able to access initiatives in the CHOs. It is about bringing the health service into the 21st century. I have worked in the CHO and in Saolta, and I have worked with people working in these areas. I know how difficult it is, but we must ensure the technology is available to support the healthcare professionals to deliver this, particularly assistive technologies. Senator McGreehan referred to windows, doors, remote controls and so forth. It is very important to let people be able to live independently at home, especially now when they are not able to access day services. Are we investing in technologies such as screen reading for vision impairment, voice output communications and wearable technology, particularly with medication reminders? There are phenomenal companies and this technology exists. How do we work with Enable Ireland and the Disability Federation of Ireland to try to bring this across?

I will conclude, and I thank the Minister of State. My comments are really about how we use technology to support people.

Seán Kyne

Senator Seán Kyne

Every Member of the House has experience of dealing with parents and families of users of day care services. We see their frustration, tiredness and desperation. Their first priority is looking after their loved one. A common refrain I hear, especially from parents on behalf of their children, is: "I am fighting all my life." They are fighting all their lives on behalf of their loved ones. That is a difficult place to be with regard to a service that is absolutely necessary. Often one sees family members doing the jobs of carers. They become part of the caring process out of love for, and out of obligation to, in some cases, their siblings or parents. That is tough on them. It is tough on young adults and teenagers, who have enough pressures and who might have siblings with a disability. Depending on the type of disability, it can be very hard on teenagers who have their own pressures, their own growing up to do and their own issues with social media, peer pressure and so forth.

I wish to acknowledge the service providers Ability West and the Brothers of Charity in Galway, charities that do excellent work looking after our most vulnerable citizens. Caring is very labour intensive. It is one-on-one caring. The cuts after the economic crash have been slowly reversed, but Covid-19 has had a very negative effect, obviously due to social distancing. Even the wearing of masks can be difficult because that is not what one would do under normal circumstances when caring for a vulnerable person. I am glad the Minister has provided extra reliefs and supports and I commend her on that.

Day services have been massively important for users. They like the routine. They like to know where they are going and to sit in the same place on a bus. They do not like being changed. They like to know that if they are getting on the bus first, they will continue to get on it first, and that if they are getting on it last, they will continue to get on it last. They do not like changes and those are issues that we try to resolve when they are brought to us.

Respite care is a lifeline for parents and siblings. It gives both the carers and other members of the family a chance to have a break and draw breath, to rest and relax and to recharge their batteries. Day care provides invaluable support for parents and families. They know that when they place a loved one in day care the child or adult is safe and in good hands, getting care or training in life skills from professional trainers. The training is very important for the people involved. Areas such as shopping, managing money, personal care and food and nutrition are all dealt with and are beneficial to the service users.

I am concerned that day care services have been restricted for users due to Covid and the need to reduce numbers with social distancing. Users might only get two days one week and three the next. Having spoken to people in the services, there is uncertainty regarding transport services after Christmas, which goes back to my point that some of them feel they have been fighting all their lives. Day service staff numbers have been reduced to fill gaps in residential services, with a dependency on taking people from a relief panel when needed. These professionals need certainty in their lives. They have no contracts and even if they are offered one it is often for 20 hours a week which is not enough to allow a person to plan for a career in a very important area.

I am also advised that in some cases the technology in training centres is out of date, as Senator Dolan noted. There is sometimes a policy of making do and renting space rather than having purpose-built facilities. We have to stop the stopgap mentality and put in a properly planned, funded and managed service for our most vulnerable loved ones. Service providers are doing a great job on our behalf. It is our job to see that they get the resources they need to do what they would like to do and what the people who use the services deserve. I again thank the Minister of State for the work she has done so far in her Ministry and the funding that has been provided through this Government, as well as her involvement and advocacy.

Anne Rabbitte

Minister of State at the Department of Health (Deputy Anne Rabbitte)

I thank everyone who contributed to the debate and the conversation this afternoon. Normally when I wrap up a conversation I try to address the people who have waited this long to contribute and give them answers or some form of feedback. I do not stick to a script, which concerns Department officials, but I will do my best.

Senator Keogan spoke about the 24 service users who have not returned to their unit. That unit is currently an isolation unit but I am led to believe that those users are getting an outreach model. I will talk to the Senator further about this afterwards but I did some my research while I was sitting here.

Senator Boylan spoke about Inclusion Ireland. That was my starting base when I became Minister of State with responsibility for disabilities. The report was launched the morning after I took up this position and there was an awful lot of reading within it. It might have come from a small basis but regardless the voices were heard very clearly and were very reflective of many families and the frustration of people around the country. I look forward to next week's report. The Senator seems to have a little more information on the report than I do. I look forward to its publication next week in order to learn more from it. It will be very reflective of what was said in the House this evening about the frustration and the struggle. I am acutely aware of that and that is what the budget was built on.

Senator Ruane asked for a timeline for the optional protocol to the UNCRPD and everything else. I am led to believe that much work is being done on that and we should see progress on it in the new year. The Senator is also aware of the work that is going on at the new Joint Committee on Disability Matters, which she acknowledged. We will be tick-tacking with that committee and I wish its Chairman, Deputy Michael Moynihan, the very best of luck with it. It will be a great place with such a skill set from Senators and Deputies who will talk about the nuts and bolts of service providers on a day-to-day basis. We will also talk about the legislation that is needed to make things happen. It will be a good place where Senator Higgins and many other Senators can bring through the legal structures and strands that are needed to ensure these services work.

Senator Garvey brought up Clare and articulated the frustration regarding transport, which is a huge piece, as is the integration aspect of it. I am meeting the Minister for Transport, Deputy Eamon Ryan, and the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, on Friday to discuss transport and integration and how we can make things more accessible. The Minister is spending €1 million a day on greenways, walkways and cycleways and we must ensure persons with disabilities can also have the same claw on that money. When we hand it over to local authorities or whoever, we must ensure the voices of those with disabilities are at the core because if something is good and inclusive enough for persons with a disability, it is inclusive for all. That is what I am trying to do there. I am trying to disability-proof things.

To go back to the county I share with Senators Kyne and Dolan, we cannot say enough good things about Ability West, the Brothers of Charity or Enable Ireland. That is no different for the providers in all other constituencies and counties. They do phenomenal work. Senator Kyne's ending remarks were wonderful. They will stick with me and I wrote them down. He spoke about making do and how we have to stop the "make do" attitude. We have to plan, reform and put a sustainable sector in place. This sector is something we have made do with. This is not about a particular Government at any one time. It is about who can shout the loudest to make that space. I will work with all my Oireachtas colleagues, across all Departments and both Houses, to ensure that "make do" attitude changes and we put in a sustainable structure in place.

Senator Kyne also spoke about integrating technology and Senator Conway mentioned employment. Technology will be such an important aspect of that. We talk about innovation hubs, community hubs and connecting people and for the first time ever, Covid showed us that we can connect people through technology and have that whole inclusion piece. That is what the €20 million fund is about, for the HSE or the providers themselves to show new innovations and new directions. They must show us what they will do differently as a provider and, if the Department is to fund them, how exactly they are doing something different and resetting the dial. Service users want to hear that we are prepared to reset the dial on disability and that is what that €20 million is about.

We also need collaboration and joined-up thinking with service providers regarding transport. If a bus from Ability West goes down a certain road and the Brothers of Charity go down the same road, then there are two buses from the one area going in the one direction. We might have a little bit of collaboration by having one bus providing a service to both families. That is inclusion and integration from the start. The bus might be bringing people to different providers but we can do that.

Senator Byrne referred to my visit to St. Aidan's in Gorey. It was a good visit and a lot of learning was taken from it. I saw first-hand the beauty and the integration that was taking place, the workshop and the garden centres, how a community can evolve and where people with disabilities are at the centre of community. It was borne out well and we had a great cup of tea afterwards. That was prior to the current restrictions, in case anyone is wondering. It was a very informative evening.

Senator McGreehan is my spokesperson on disability in the Seanad. She is my eyes and ears and keeps me updated on a regular basis. She spoke about the families of carers and the person-centred approach. We must acknowledge the role of carers at all times. Senator Kyne drew that out again. He talked about the impact of a whole-of-family approach and he is right about that. Teenagers doing their leaving certificate or junior certificate exams are stressed and do not know what is going on. That is awfully important for the parent who has to balance that care. I applaud carers and we should be doing more for them.

Acting Chairman (Senator Pat Casey)

I thank the Minister of State for coming here again and for her commitment to the House.

Sitting suspended at 4.19 p.m. and resumed at 4.35 p.m.