Ms Fleachta Phelan:

I thank the Cathaoirleach for the invitation to speak to the committee. DFI is a federation of over 120 disability organisations across Ireland. A handful of members are attending with us today. Both Family Carers Ireland and Care Alliance, which the committee heard from earlier this morning, are members of the federation. To inform our input into this committee, I held a short focus group with members on the impact of means testing on the communities they serve. First, it is important to remember the context. The social protection rates currently provided to disabled people are insufficient, especially given the extra costs with which they live with. Last year, one in two people, or 44.7%, who were unable to work due to a long-standing health condition, which includes disability, lived in deprivation. This means they were unable to afford basic essentials. This is shocking and cannot be allowed to continue. We can and should make different policy choices.

I note that in an earlier hearing, the Department of Social Protection highlighted the effectiveness of our social protection system at alleviating poverty and in that discussion, it cited recent SILC data but the "at risk of poverty" rate for those unable to work due to health problems is almost three times higher than the national average at 27.3% compared to 10.6%. This shows that our system is not delivering for people with disabilities who cannot work and that we need to make changes.

Means testing in particular compounds and perpetuates this. At an operational and administrative level, there are many issues, which Ms Porter and Mr. Hannafin will outline. Echoing what the committee heard earlier in the care discussion, one individual described the experience of submitting to means testing to me. They said, "You feel degraded, like you are begging". Unfortunately, the experience for thousands of applicants every year is that they get refused on the first instance and have to appeal. In 2022, 43.2% of disability allowance appeals were allowed. This was the highest "allowed" rate for appeals across all payment types. We see this pattern year in, year out. The experience of means-testing reviews also causes difficulty for families that are already struggling. Our member Down Syndrome Ireland reports many of its members being reviewed and losing supports in recent years in spite of the ongoing cost-of-living crisis and the many disability-related costs that households live with.

People with disabilities are means tested based on the incomes of those they live with. This includes family members, romantic partners or housemates. This creates a form of financial dependency and denies people’s right to independent living. It perpetuates an assumption that disabled people should rely financially on parents or siblings for the rest of their lives and that families will absorb the extra cost of disability. In the context of romantic relationships, this is often referred to as the "love tax". If a person with a disability moves in with his or her partner, he or she may lose some or all of his or her supports due to his or her partner’s income despite still being disabled and having all the same costs he or she had before. Some European countries like Belgium have changed this in recent years. Unfortunately, this is also, as one of our members describes it, "a recipe for domestic violence" where a disabled partner is in a situation of financial dependency and has to ask his or her partner for money rather than having his or her own independent income. This is particularly problematic because we know that women with disabilities are much more likely to experience domestic violence.

Another issue that came up earlier this morning is the absolute nature of means testing thresholds and the cliff edges. For example, Cystic Fibrosis Ireland supported someone recently who was refused a disability allowance due to their household income being €4 over the threshold. The impact of this for the individual was financially devastating. At a minimum, there should be a tapered approach and a consideration of partial rates.

Ireland has one of the lowest disability employment rates in Europe and this is not unrelated to means testing and the loss of supports. The fear of loss of a medical card is a huge barrier to disabled people taking up work. Medical card entitlement should be based on medical need rather than means testing - something the OECD has also recommended.

In the majority of European countries, disabled people do not lose their disability supports when they work, unlike in Ireland. This is also why the income of people on disability payments tends to stay around the income disregard levels because the risk of losing other supports is too significant. The income disregard levels should increase, as should the means allowance for those who cannot work, to allow for other small forms of income, such as pensions from parents, inheritance and so on.

One positive of the disability allowance is that, relative to other payment schemes, it has a higher capital disregard, which is an acknowledgement of the extra economic vulnerabilities that disabled people live with. However, that has not been reviewed since 2007, despite huge escalations in costs since then, particularly in housing, which affects those saving for a deposit, as well as the recent high levels of inflation. This can also cause trouble for people moving across schemes or awaiting the outcome of an appeal. I have heard from a lot of disabled people who have been refused applications for additional needs payments and told to use their hard-earned savings instead. These are savings that they are keeping to deal with medical contingencies and other unexpected developments.

To better support disabled people with the very significant extra cost of disability and ensure they do not continue to live in deprivation, we could take a range of measures. We should start assessing the cost of means-testing. Deputies mentioned this earlier in the context of removing means-testing for family carers. We should consider moving to universal payments but at minimum, we should have a much higher household income cut-off point and should be explicitly factoring in the extra costs of disability. Disabled people should be means-tested only on their own income and means, not that of their family member, partner or anyone else living in the household with them. We need to provide a medical card and other entitlements like the free travel pass based on medical need and disability status. These should not be means-tested. There was a discussion earlier about 20 years of demands. We need to bring in a cost of disability payment. This demand has been around for at least 30 years, originating with the Commission on the Status of Persons with Disabilities in the mid-1990s. We need to introduce a non-means-tested, universal cost of disability payment of a relatively meagre €40 a week, starting with social protection recipients. We need to develop tapered supports for those who may be just above the cut-off rates to address any cliff edges. Consolidation of means testing would also be welcome. This came up in previous hearings. Many disabled people have to fill out separate forms when applying for different supports from the State such as medical cards, the fuel allowance, or the housing adaptation grant, for example. Reducing this duplication would save time, administration costs for the State and stress for the applicant.

Finally, I wanted to briefly mention energy poverty because I know the committee has had discussions on this issue previously. I want to draw attention to the much higher levels of energy poverty that disabled people live with because of low incomes, high costs and their higher energy needs and requirements. Every year we see this in the annual energy deprivation indicators. The data shows a very significant increase in energy poverty between last year and this year, so we need to keep a watchful eye on that. We need to consider disabled people's needs when we are developing policy around energy poverty.