Pauline Tully (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I also wish to acknowledge the people in the Gallery and pay tribute to the work they do in advocating for equality and inclusion. I thank the Social Democrats for tabling this motion and for providing the opportunity to speak on the challenges that disabled people face with additional cost of disability and the level of unmet need.

The Indecon cost of disability report confirmed what was widely known but frequently not acknowledged, namely, that there is a significant additional cost to disability. This is the extra spending that a disabled person faces in dealing with day-to-day life that non-disabled people do not, in order to achieve the same standard of living. The cost of disability report states that the average additional cost of disability for a person with a disability, depending on its severity, is anywhere from €8,700 to €12,300 per annum.

Currently, the rate of poverty and social exclusion for disabled people in Ireland is one of the highest in the EU. We also have the lowest employment rate of persons with disabilities in the EU. Why is this the case? It is because disabled people fear the loss of, or severe reduction in, their core payments and secondary benefits if they take up employment. The loss of the medical card is especially worrying for disabled people. This is a disincentive to work. It keeps disabled people in a poverty trap.

One woman who came into my constituency office this week said that she had been told by the Department of Social Protection that she would not lose her reduced disability payment if she returned to work for one or two days per week. Guess what? She lost it. She ended up receiving the same income from work as she lost from the social protection payment. Yet, she had the extra cost of transport to get to work. There is therefore no incentive to work.

Disabled entrepreneurs and disabled artists are particularly discriminated against, because the entitlements to employ a disabled person are not afforded to the self-employed to employ themselves. They deal with the loss of payments on a continual basis. There needs to be a cost of disability payment immediately.

A year ago I, and indeed others, called for the publication of the capacity review. We all welcomed it when it was published. This identified the scale of unmet need, which is significant. We were informed in April 2022 that an action plan for implementation was being finalised. We are now three months on and there is no sign of this action plan.

The United Nations Convention on the Rights of Persons with Disabilities was ratified in this country in 2018. This underpins the rights that individuals should expect to have realised, irrespective of the nature or the complexity of their disability. However, children are not being supported, whether this is through primary care or the children’s disability network teams. There is an insufficient number of places for children with additional needs in our schools and, in particular, for autistic children. The right to live independently with the choice of where and who to live with is extremely important. It is underpinned within the UNCRPD. However, thousands of people are still living in congregated settings, despite a Government commitment to transfer all of those people into accommodation within the community. Approximately 1,300 people under the age of 65 are living in nursing homes. The practice of putting people into nursing homes continues. In addition, there is an unquantifiable number of adults living with aged parents in the family home. They have no choice but to remain there. Many of these adults have been on social housing lists for perhaps ten to 15 years. They have no prospect of being housed any time soon. The parents are anxious from the time the child is born until they are in their 80s or 90s about what will happen to their son or daughter when they pass. This is because proper provision has not been made for the person to live independently and to be supported in their community, as is their wish and their right.

I know of one woman whose daughter was in her 40s. She had complex needs. She was on the social housing list for years. When her mother became ill and ended up in hospital, she spent her time doing the lottery. She was hoping against hope that a win would mean she could provide for her daughter after her day. Suitable accommodation is not provided when the disabled person is young. Instead, it is left to this emergency situation, when the person is trying to deal with the grief of the loss of a parent, as well as coping with moving into an unfamiliar setting.

A number of issues require addressing immediately. One of them is workforce planning, because the level of recruitment and retention within disability services is dismal. There is an urgent need for pay parity within section 39 organisations. There has to be cross-departmental co-operation between Departments, but particularly between local authorities and the Department of Housing, Local Government and Heritage, with the Department of Health and the HSE, to provide suitable accommodation for disabled people who wish to live independently. Personal assistance service needs to be made statutory and needs to be properly funded.

I have limited time to speak on these issues. I feel that I am not doing the people affected by this issues justice, because I could speak for hours about any one of them. Yet, words are not important; action is needed here. I fully support the motion but we need action on these issues.

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