Teresa Costello (Fianna Fail)
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I welcome the Minister of State. I am raising this really important issue today as it is one that I have encountered in my own constituency. However, I must admit that it was not a scenario I had ever considered until I came face to face with people living it and, unfortunately, it is one that affects many families throughout our country.

The role of our carers cannot be understated. Unless you have experience of being a full-time carer, you could not possibly comprehend the day-to-day of their lives. Any one of us, through circumstances outside of our control, could become a carer. It is a role that can happen through an accident or the illness of a loved one. Others become carers on the day their child is born.

To dedicate your life to the care of a loved one is admirable, but the hidden sacrifice and struggle is immense. I would like to concentrate today specifically on the challenges faced by elderly parents who are still caring for their adult children with disabilities. These people provide care at home for their children and, as they age, they worry about what will happen when they are no longer able to care for their child, and I say "when", not "if". I was struck last week while listening to an interview with elderly parents who care for their 40-year-old daughter who has an intellectual disability. This couple expressed how they are genuinely concerned about what will happen to their child, again, when, not if, they can no longer care for her. The father even went so far as to say that they hope their daughter goes before them. Take a moment to reflect on that statement. This heartbreaking statement is a sentiment that is echoed throughout this cohort of people.

According to recent figures, more than 2,000 people aged over 70 are providing full-time care for their adult sons and daughters; 500 of those parents are now aged over 80. As a parent of a child who does not have a disability, I worry what the future holds for him. For a parent of a child with a disability, who is vulnerable, incapable of advocating for themselves and who relies on the care of others to have their needs met, I cannot imagine the worry they feel. The Minister herself has said that disability services in Ireland are coming from a very low base and she acknowledged that a particular emphasis has been placed on emergency planning and not enough on forward planning. A low base, where the most vulnerable in our society are concerned, is unacceptable. A low base can no longer be the standard, and we cannot operate on a system that often reacts only in crisis. Emergency is the least effective, most distressing and most expensive way to support a person to access their rights.

Today, I ask what forward planning is in place to support elderly parents in the care of their adult children who have disabilities when they can no longer provide care? If there is no plan, what plan is going to be put in place? What these people are asking for is not a luxury; it is a necessity. These parents need to be certain that when they need to step back, when illness forces them to, there will be a safe, local and permanent place for their children to live. The Minister has spoken of the need for a new mindset. That mindset must include enough funding for residential places, providing clear and accessible information for families, offering respite, planning supports and ensuring that adults with disabilities can live in homes that keep them connected to their communities. Parents who have devoted their whole lives to being carers should be entitled to take a step back when they can no longer provide care and live out their later years and enjoy their child. Most importantly, they should be able to die in peace knowing that their child will be cared for and loved just as they were when they were alive.

Jerry Buttimer (Cork South-Central, Fine Gael)
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I thank the Senator for raising the matter and wish her luck in her lip sync at the weekend. The contribution she made is a powerful one because it is the lived experience of many parents. In many ways, the reply I give will be inadequate to the articulation she has given because she is right. There is a group of parents who are caring for their disabled adult child, and they are now reaching a point where they cannot do it anymore. It is a huge issue and one that we encounter. I speak as somebody who is involved with what was Cope Foundation and is now called Horizon in County Cork, and who recognises the powerful words the Senator spoke this morning, because people are living it every day. It is affecting their quality of life, and they want certainty for their beloved adult child for the future when they are not here. That is not dramatic; that is a real concern of the elderly for their children, who in some cases, as the Senator said, have been cared for from the cradle to the grave. It is when the parents leave that this becomes a problem. The Senator is right. I thank her for raising this important issue.

Government is aware that there are a growing number of elderly parents who are caring for people with disabilities and a lot - not all - of those adult children will require residential care as their parents continue to age and as they will after their parents die. Furthermore, Government recognises the vital work carried out by family carers as well as the impact that caring can have on carers' physical and mental health. The Senator rightly raised that point because there is a huge concern for parents who want necessity of certainty and quality of care. Government acknowledges the importance of the voice of the person with the disability and the wishes they may have regarding their own future. It is also important to note that, currently, demand for specialist disability residential places exceeds what is currently provided.

The Department of Children, Disability and Equality is working with the HSE to address current levels of demand in line with the 2021 Disability Capacity Review to 2032, and the subsequent Action Plan for Disability Services 2024-2026. The disability capacity review 2021 identified a significant level of underprovision of residential care places, as the Senator outlined. The review projected a need for a minimum of around 100 new residential places every year from 2020 to 2032 arising from changes in the size and age structure of the relevant disability population.

The subsequent Action Plan for Disability Services 2024-2026 has committed to providing 900 residential placements for people with disabilities. The HSE, together with approximately 90 service providers, is providing 8,808 residential places to people with disabilities. In 2025, the Government has secured €3.2 billion for disability services, which includes €106.6 million in additional funding for disability residential services. This funding was provided to support in the order of 70 new residential placements. Up to August this year, 142 such places have been created. In budget 2026, a total of €3.8 billion has been allocated for specialist disability services, representing an almost 20% increase year on year. From the period 2020 to 2024, 709 new priority one residential places have been created for people with disabilities. This, with the places provided to August, brings the total number of new places to 851 since 2020. This level of provision has undoubtedly assisted those who were awaiting a residential placement, including those with disabilities who are being cared for by their ageing parents.

The Department of Children, Disability and Equality, alongside the HSE, is continuing to work to increase provision in order to assist those who are most vulnerable in our society and who urgently require services. In addition to residential services, there are other measures that are available to support people with disabilities and their families and carers. Other supports include day services, respite services, intensive support packages, home support and personal assistance. I recognise that, in some cases, they may not be available or they may not be what the people the Senator spoke about require. I recognise the burnout and the need for relief for family carers. I commit with the Department to ensuring that the provision of residential places through a multi-annual capital plan will be progressed. I look forward to working with Senator Costello and the Department to ensure we do meet the needs of elderly parents.

Teresa Costello (Fianna Fail)
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I thank the Minister of State for his response. A really important part of meeting the needs is very good communication with the parents. They are going to be handing their child over for care when they are not there. I want people to be able to die in peace - I know it sounds dramatic - and to feel that their child, whom they have cared for all their lives, will be cared for in a loving, safe, high-standard environment in an area to which those people feel their children are connected. It will have to be very trust-based, working with people with the lived experience because they are the people who really know the ins and outs of it and they are the people who will direct us best in what they need and what is best for those children.

Jerry Buttimer (Cork South-Central, Fine Gael)
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I again thank Senator Costello. She is right; it is about communication, but it is also about trust. It is about prioritising this very important issue she has raised because there is huge concern among that group of parents.It is a challenge. There is a significant waiting list for residential services. Demand is extremely high and exceeds what we are currently providing. The Government is working to address these challenges in order to provide people with disabilities with the services they require and their families deserve, including those being care for by ageing parents who, in many cases, require a residential placement.

There are huge challenges in providing residential places for a variety of reasons. It is important that we continue to face those challenges in the recruitment and retention of staff. We also need to examine how we can put in place certainty for individuals and families. The HSE has reported that the changing support needs of current service users is resulting in increased costs for additional adaptation services and that the cost of new residential placements has increased significantly, with the average cost of a new placement increasing year on year by 29% in the past six years. The availability of suitable housing also presents a challenge. I assure the Senator that the Department of Children, Disability and Equality, working with the HSE, is trying to address demand while also putting in place a range of supports, measures and programmes aimed at supporting people with disabilities to remain in the family home and ensure certainty for older family members, in particular.