2026-02-26

6. Deputy Peter Roche asked the Minister for Social Protection if his Department has considered introducing additional protections or supports for people living with rare diseases, given the unique financial and social challenges they face; and if he will make a statement on the matter. [15529/26]

Rare diseases collectively affect of thousands of people across our State. What makes the situation different is that the State's systems were never designed around lifelong, complex conditions that do not fit neat diagnostic or disability categories. Parents are becoming full-time carers, care co-ordinators and medical advocates, often overnight and, indeed, permanently, while simultaneously experiencing a collapse in their household incomes and a rise in unavoidable costs. They must repeatedly prove eligibility for assistance that measures disability in static terms.

I thank Deputy Roche for his question. My Department provides a range of income supports for those who are unable to work due to illness or disability, including those with rare diseases. These include non-contributory payments that are based on a needs test, such as disability allowance, but also contributory payments that are based on PRSI contributions, such as invalidity pension. Eligibility for these supports is not dependent on the type of a rare disease a person has but on the extent to which the particular condition impairs or restricts a person's capacity to work. The purpose of these payments is to provide income support for those with a condition that limits their ability to earn an income. Rare diseases present unique challenges, and these differ from person to person. They can mean that a person is unable to work or only able to work part-time. My Department's income supports are designed to support a person to work where they can. For instance, disability allowance has an income disregard. This means a person can earn up to €527.60 and still keep a portion of their payment and the associated secondary benefits. In addition, those who are on illness benefit for longer than six months or who are on invalidity pension can transfer to partial capacity benefit where they can work, earn unlimited income and still keep a percentage of their payment. Under the national human rights strategy for disabled people, which was developed with significant input from disability groups and advocates, it was agreed to establish a strategic focus network summit on the cost of disability. My Department is leading on this initiative but we also include other Government Departments in what is cross-government endeavour. It goes without saying that those who represent disabled people, disabled people themselves and their families, carers and advocates are also involved, and will play a full part in the consultation and in the summit on 13 May. I have launched a public consultation process on how a cost-of-disability payment and the strategic focus network can be best delivered, and I look forward to engaging with the Deputy and with the rare diseases group in the Oireachtas, through Deputy O'Sullivan, around supports that can be done there.

Many people living with rare diseases fall between multiple systems - health, disability and social protection. Approximately one in 17 people will live with a rare disease during their lifetime and, in many cases, these conditions are lifelong, disabling and involve frequent hospitalisations with one parent or carer leaving their employment entirely, yet many of these individuals struggle to qualify for disability supports, domiciliary care allowance or long-term illness-related benefits because assessment criteria were designed around the more typical disabilities and predictable conditions. Has the Minister examined whether the existing social protection systems are appropriate for people with rare diseases, and will he consider additional tailored supports, including assessment flexibility or a dedicated pathway to reflect the unique financial or caring burdens faced by their families?

I am happy to engage with the Deputy and the rare diseases group around those issues and the proposals the group may have in relation to the systems within the Department. As I said in my response, we provide a range of supports for people who are unable to work due to illness or disability, and that includes people with rare diseases. Eligibility is not dependent on the type of rare disease but on how that disease impacts on a person’s ability to work and earn an income. The scheme already supports persons to work where they can. That is why we have an income disregard for the disability allowance. That income disregard is €527.60. That allows the person to work part-time within the confines of their condition if it affects their ability to work. To come back to the meeting we had yesterday, we had a small discussion about the design of forms and the application process. That is something we are going to pursue. I am happy to engage with the Deputy in relation to that.

I appreciate the Minister’s honesty and his response. Most of us get representations into our constituency offices in that regard. I would have thought before arriving to this House that that would not be the norm but it is beginning to become the norm where we encounter people who have those very conditions, those rare diseases. It is imperative we find a model they can fit into and that their lives are not complicated any further. Having a rare disease can be quite complex, difficult and upsetting for families who find themselves having to manoeuvre through life with that rare disease.

Absolutely. We want to try to have a Department that helps people who have to manoeuvre through these conditions. One of my frustrations in public life is the way we silo people. That day needs to go in terms of the Department of Health doing one job, the Department of Social Protection doing another and the Department of disability doing another. That is why we are taking a whole-of-government approach to the summit on the cost of disability on 13 May. I am working with the Minister, Deputy Carroll MacNeill, and other colleagues to identify silos that are making people's difficult journey even more difficult. Those diagnosed with rare diseases have enough challenges to deal with without the State getting in their way and making that journey and challenge even more difficult. I am open to ideas from everybody in the House in relation to the schemes of the Department, how we design them and the application processes for them. We had a good discussion at the social protection committee yesterday around some areas and on how we can improve them. We are going to working on that as well.