Gary Gannon (Dublin Central, Social Democrats)

I acknowledge Sinn Féin for bringing forward the motion. Without question we will support it wholeheartedly. A cost-of-disability payment is long overdue. It is fair, it is practical and it recognises what the State has known for years, which is that living with a disability in Ireland carries a very real financial cost. Its omission from last year's budget was profoundly disappointing. The Government’s own Indecon report found that people with disabilities face extra costs of between €9,000 and €11,000 every single year. The ESRI confirmed the same pattern again this year. Households with a person with a disability are far more likely to live in poverty.

There is another cost I want to talk about. This cost is not seen in a budget or found in a balance sheet. It is the emotional cost of care; the anxiety for those who to provide care to a loved one. Last night I attended a meeting at the Ballybough handball alley alongside Deputy Sherlock. I am sure that for every one of us who has the privilege of doing the job we do a week probably does not go by without meeting a person or hearing a story that stops you in your tracks. Last night I was invited to the initiation of a campaign group called Before I Die. There I met more than two dozen parents. These were mothers and fathers who have spent their entire lives caring for their sons and daughters with intellectual disabilities. I was at the bottom of a row of seats. In front of me were about two dozen parents of all ages. Some were in their 80s and some were slightly younger. Some had gone through a divorce and others had lost a husband or wife. Each of them carried a picture of their now-adult child who they provide care for every day. They looked at us, as people they had elected to represent them, told their stories of the care they provide to their sons and daughters and then asked of us the simple question of what will happen to their adult children after they pass away. When any of us who hear those stories look into the whites of the eyes of the people who are asking us that question, we cannot help but wear it on our skin and make a commitment we will carry that story into the Chambers where we make the decisions that have impacted their lives. The question of what will happen after they die is at the heart of the campaign and is one no parent should have to ask. Among them were Tony and Susan, whose daughter Aoife is 42. She is bright, funny and full of life. Tony and Susan are in their seventies and have loved and cared for Aoife every day of her life, but what they asked me and what every parent in that room asked in their own way was what will happen to their children when they are gone.

More than 2,000 adults with intellectual disabilities are still living at home with their parents and 500 of those carers are already over 80. More than 1,200 people under the age of 65 are in nursing homes not because that is what they need, but because there is nowhere else for them to go. That is not a care system but a crisis disguised as normality. These families have held up Ireland’s disability services through sheer love and determination but they are exhausted. They live with the constant fear that when they can no longer lift, feed or comfort their child the State will not be there.

The services that should support them are stretched to breaking point. St. Michael's House had five respite houses before the recession and now only has one. Providers are running on deficits. Staff are leaving. Supports arrive in emergencies but never as a right. The National Federation of Voluntary Service Providers has warned that families are in crisis and services are in survival mode. That is what I saw last night in Ballybough. I saw people who have given everything and are still living in fear not of their death but of what happens afterwards. We need a cost-of-disability payment and I would welcome it wholeheartedly, but if we stop there we will miss a deeper truth, which is that the cost of care is being paid every day in exhaustion, in anxiety and in the quiet panic of ageing parents who fear dying before their children are safe.

8 o’clock

Love should never be a substitute for the State. If the Government is serious about equality, the people I met last night asked for three things. First, they asked for the creation of a national residential care plan for adults with disabilities, that the Government publish clear targets and provide ring-fenced funding and that it close the shortfall of between 800 and 2,300 residential places within its lifetime. Second, they asked the Government to restore respite care to at least pre-recession levels. Families need time to rest and recover. Respite is never a luxury; it is what keeps everything else standing. The third ask is to fix the funding model for disability providers. There are 30,000 people working in this sector. They need stability to plan, hire and keep delivering care with dignity. This is not charity, it is the essence of what it means to be a citizen.

Last night in Ballybough, every parent told me the same thing: they do not want sympathy, they want certainty. They want to know their children will be safe, valued and loved when they are gone. We call ourselves a republic that cherishes all its children equally, but if we continue like this, leaving families to carry the emotional and financial burden of the State, then those words simply mean nothing. The cost-of-disability payment will ease some of the pressure but it must be the start of something bigger, a turning point where we finally build a country that plans ahead, that provides and that gives families peace of mind.

The name of the campaign is Before We Die. It is a plea, but it is also a challenge to build a republic that truly cares for people like Aoife, not after their parents are gone but while they are still here to see it. Those parents have already given everything. There is so much we can do for people with disabilities in this country. A minimum starting point would be to provide their parents with the certainty of knowing that their children will be cared for after they have gone. That is the essence of a republic. What else matters beyond that?

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