Pauline Tully (Sinn Fein)

I speak in support of this Bill. I spent many engaging hours as part of the Committee on Disability Matters during the previous Government term, along with Senators Clonan and Flynn and a number of others. I engaged with the Acting Chair, Senator Rabbitte, as the then Minister of State many times on the issue of disability as well. I learned so much from the engagement with disabled people who were advocating on behalf of themselves or with advocates, perhaps family members, engaging on their behalf. The committee was very focused on the UNCRPD, which is all about rights for disabled people and disabled people being able to control and manoeuvre their own lives. We discussed many issues at that committee that affected the lives of disabled people but one thing that came through was that it was not the disability that was the issue, but the many barriers and obstacles in everyday life that were really disabling people. We spoke about supports and services for disabled people. Maybe some people were happy to a degree with what they were receiving, but many were not. I remember speaking to one father outside of the committee whose daughter had quite complex disabilities and was attending a day service in Galway. He really felt it was not addressing her needs. When he queried the provider or the HSE about getting a better day service for her, he was basically told to take it or leave it, that was what he was getting and that was what was there.

During the Covid lockdown when many services had to close and disabled people remained at home being cared for by family members, who were often aged parents, I was frequently asked about what was happening to the budget that was allocated to those people while they were unable to access the supports and services. Some services tried to engage, called out to people's houses and provided some form of service, but many did not. Whatever happened to that budget that was supposed to be allocated to a person but was not provided to him or her during that time?

Day services vary but we have such a low level of expectation for many of our disabled people, especially those with intellectual disabilities. It is often just assumed that if a child attends a special school, then he or she automatically attends a day service afterwards. We need to start looking at alternatives to somebody only going to a day service. There are many good examples of training courses out there that are operated well. Even teaching basic living skills would be very important and would engage people. During my time as a teacher, I taught students with intellectual disabilities. I have taught students with Down's syndrome who obtained a leaving certificate through a leaving certificate applied course. I then heard that they had gone on to attend a day service where they were sitting and colouring pictures. We need to look for a lot more for our citizens. People deserve more.

That is why a personalised budget will give people options. It will give them options to purchase or engage services that suit their needs. We have the personalised budget pilot and I know it is being evaluated at the moment. I sincerely hope that we receive that evaluation soon and that we can look to that to guide the way forward to providing people with a personalised budget if that is what they so choose.

There is the whole issue of personal assistance. Senator Clonan referred to the fact that a personal assistant put his son to bed at 8 o’clock on a summer's evening. I have heard similar stories of people who are dependent on a carer coming to their houses at a certain time. It is not about the person who is cared for, but the personal assistant trying to fulfil a number of appointments. A person could be put to bed at 7 o'clock or 8 o'clock in the evening and then may not get the assistance to get up out of bed until 11 o'clock the next morning. What kind of a life is that? The people themselves should have the option to engage the personal assistants who work for them and help them to get up, go to bed or to do whatever it might be, for example, go to work, shopping or socialising during the day, so that they are not tied to the hours of a carer. I know some people have been allocated personal assistance hours but the whole system for employing a personal assistant is awfully bureaucratic and very difficult for some people to manage. We need a streamlined service for personalised budgets, whether that is to employ a personal assistant or acquire other supports and services, that is easy for anyone to access and does not require a company being set up to pay the PRSI and PAYE. We need to find a system that is streamlined and a personalised budget officer and office would be the way to go about that.

I fully support the Bill and I am disappointed about a delay of 18 months.