Wednesday, 6 December 2017
I do not know whether the Taoiseach saw the "Prime Time" special programme last evening which revealed the appalling and heart-rending situation facing many carers across this country. If the Taoiseach did not watch it, and he may not have had the time, I would recommend that he watch it fairly quickly because it revealed the appalling lack of sufficient State resources to carers. That lack of resources was laid bare, as was the enormity of the challenges that they face and the scale of the crisis. The disability sector is in crisis. Last night's focus was very much on the lack of any horizons, of any plans and of any clear pathways, in particular, for parents with adult children with intellectual disability.
We thank all of those who contributed to the programme and who gave us their stories. There was Jack Brennan, who is nearly 85 years of age, caring for his wife Bernie, who has Alzheimer's disease, at home. Since the programme, Jack had a stroke and his beloved wife, Bernie, is in a home. She got two and a half hours a day in home care and home help. Jacinta Walsh from Drogheda, aged 51, is caring for her 18 year old son, Sam, with autism. There is no respite care in the entirety of County Louth for adult children with autism or with intellectual disability. Teresa Kinsella's was one of the most heart-rending of all presentations. Diagnosed with early stage Alzheimer's disease, she is looking after her daughter, Fiona, not knowing what lies in store. There was Mary McDonnell from Cork whom many of us would be aware of in terms of her life-long care for her beautiful daughter, Sinéad. Since the programme, her daughter passed away. For many of these parents, the appalling vista visits them every day that they do not know who they wish would die first. That was said last night on the programme, in many ways revealing the appalling dilemma, plight and lack of any certainty in their lives.
The lack of respite care is shocking. We all encounter this across the country. Only last week in my clinic, a gentleman came in to make representations because he is currently looking after three older siblings in their 60s with intellectual disability. When I contact the service provider, I am told that the family situation is indicative of the growing crisis in the disability sector. I could detail many more cases where there is real risk of tragedy occurring because of the lack of supports being provided. Such safety concerns were reiterated last evening, as was the real sense that there is no grasp of the reality at Government or HSE level that families across the country are in crisis.
The real problem is it requires a step-change in Government response. The national intellectual disability database lays out the demographic challenges and the 5,000 plus additional adult children with intellectual disability, if one uses that phrase, coming on stream who need new services.
The data is there for the Government. What is missing is action and resources. I would ask the Taoiseach to watch the programme and come back to the House with an action programme to deal with the crisis that so many families in this country are facing right now.
I did not have an opportunity to watch the programme last night as I had other commitments but I will make a point of doing so over the weekend. From what I have heard, and the briefing note that I have been given, I am familiar with two of the five families that were featured, one being a constituent who we have been trying to assist through my constituency clinic for a number of years without success to date and the other being a person I met when I opened a special school in County Louth only a few weeks ago.
The experience of the five families that were featured on "Prime Time" last night is not unique. It is an experience shared by hundreds, if not thousands, of families around the country. We are all familiar with carers and their families and the enormous challenges that they face. Everyone in this Government is full of concern and respect for the enormous and important work that family carers do and but for luck or the grace of God, we could find ourselves in the same position with a loved one, a brother, a sister, a child or maybe a parent who needs care. That is why we as a society need to support family carers much more than we currently do.
It is important to acknowledge some of the significant actions that have taken place since this Government, involving Fine Gael, Independents and the Independent Alliance, took office. We have fully restored the carer support grant, which is very important. It allows carers themselves to take a break or in some cases, purchase respite care. We have increased the Christmas bonus. As Minister for Health, I brought in the 12-week rule, which means that if the person the carer is caring for dies or if he or she goes into long-term care, the carer continues to receive the carer's allowance for 12 weeks so that the carer can get his or her own affairs in order. Deputy Micheál Martin will recall that when he was last in Government the carer's allowance and carer's benefit were cut by €16.50 a week. We have restored the first €5 of that, we will restore the next €5 of it in March and we will restore it fully in the term of this Government.
In terms of what is provide, there are 10.5 million home-help hours provided, 16,750 home-care packages and 190 intensive home-care packages. Roughly 161,000 respite nights are provided every year. Some 2,000 people receive holiday respite so that their family carer can take some time off. There are 42,000 respite days provided. Some 128 new residential placements will happen this year for those who do not have them currently and 75 people will receive in-home respite where somebody comes into their home and provides respite in the home thus allowing the carer to take a break or take a holiday.
The budget for disability services, as Deputy Micheál Martin will be aware, has increased dramatically in the past number of years, from €1.4 million in 2014 to €1.76 million now. That does not even include the budget for education, which is similar, and income supports through social welfare. For the first time, we have a Minister at the Cabinet table who reminds us about disability all the time.
I absolutely acknowledge that much more needs to be done, particularly in four areas, the areas on which the Government will focus in the months and years ahead. The first is respite care, an area in which there is a desperate shortage. I know of the needs of families and respite care provision keeps them going. It is the hope on the horizon. The fact that they might be able to take a week or an evening off and get a break is what keeps people going. Respite care provision is an area in which we need to do much more. The second area in which more needs to be done is the provision of residential places, of which there are not enough. We are trying to decongregate people from institutions, but at the same time we have people in their homes who need placements. We also need to do more in that space. Personalised budgeting is very important, a matter about which I will speak more later.
I think it was Johanna Powell, one of the carers on the programme shown last evening, who said she did not want politicians to say anymore that they were full of respect, concern and admiration for her. She wants people to get angry and action. She does not want to hear more statistics and announcements that bear no relationship with reality. It is not that there are not sufficient respite care services; there are no respite care services. That came across clearly last evening and we all know it. We cannot get a respite care service for people who are in dire situations. I am not talking about those who need routine respite care - I hate using that phrase - but about emergency cases. Every case I have itemised is an emergency case. The service providers are now only dealing with emergency cases. The absence of respite care services is a shocking indictment of us all.
As I said, there are almost 5,000 people with intellectual disabilities who will require new residential, day and respite care services in the period from 2018 to 2021. A further 10,500 people who are availing of existing services will require different services in that period. It is estimated that up to €200 million in additional funding will be required, but the Minister for Health only received €75 million in additional funding. That covers Lansdowne Road agreement and service developments in the previous year and leaves very little for new, additional services. If the Government does not acknowledge that there is a crisis, it makes the challenge of dealing with it all the more difficult. I put it to the Taoiseach that it is about priorities. I acknowledge that we cannot do everything for everybody, but perhaps we should think again before we start saying we can give hundreds of millions of euro in tax relief to high income earners as opposed to looking after those who need us to look after them. Instead of leading on the former as a budgetary strategy for next year, how about leading on proper investment in public services of this kind? In the last two months I have identified quite a lot of services which are woefully lacking. No family should have to go through the distress they have gone and are going through and the programme last night was only an example of the crises families are going through.
Deputy Micheál Martin is quite right. Carers, including family carers, do not want or need soothing words from me or the Government. They need action. They do not want rhetoric and false promises from Deputy Micheál Martin either, given his record in government of cutting the disability budget three years in a row.
Both of us should do what we need to do, which is to make sure additional services will be provided. The Government is absolutely committed to doing this. The next budget will prioritise services and investment in infrastructure over tax cuts, as the last one did and the one before it. It is very much the position of the Government that for every euro we give back to working people in tax reductions, two or three will be spent in the provision of better services and making improvements to infrastructure. I absolutely acknowledge that even though there are 160,000 respite care nights, 2,000 holiday respite care placements and 42,000 respite care days provided every year, it is far short of what is required. As a Government, we are determined, in working with the Minister of State, Deputy Finian McGrath, to increase the availability of respite care in the months and years ahead to give families what they need, which is hope on the horizon and the possibility of being able to carry on. Respite care is a lifeline for them which makes it possible.