I thank the Cathaoirleach and members of the committee for their invitation to contribute today. I thank the committee for the series of inputs that were dedicated to Article 19 of the UN Convention on the Rights of Persons with Disabilities. I commend the Deputies and Senators who have engaged to date on these matters.
To tell a little about myself, I am a son, brother, husband, friend, co–worker and very proud disabled person who uses a personal assistance service to live a life of my choosing. Growing up in rural Ireland and being the youngest of nine siblings, my independence and activism skills were fostered from a very young age. I went through education and progressed to university and now work in full-time employment and live with my wife, Ally. I have received appropriate supports to live and experience the same life as my non-disabled peers. These supports include assistive technology, a powered wheelchair, peer support, a special needs assistant, exam accommodations, accessible transport, accessible accommodation and personal assistance. These supports have allowed me to make fundamental decisions and choices throughout my life.
With that said, I am very proud to be here representing a movement of disabled people across Ireland in my role as policy officer with Independent Living Movement Ireland, ILMI. In this opening statement I will bring the committee through an introduction to ILMI and the philosophy of independent living. I also want to speak about what a personal assistance service is and our PASNOW campaign.
ILMI is a campaigning, national representative, cross-impairment disabled persons organisation. We promote the philosophy of independent living and seek to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people must be informed by disabled people through our representative disabled persons organisations. Our philosophy can be summed up as nothing about us without us and rights not charity. Our vision is an Ireland where disabled persons have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals.
ILMI was established as the first Irish centre for independent living in 1992 by and for disabled people in order that we as disabled people have choice and control over our lives, and fully participate in society as equal citizens. The personal assistance services that are now available in Ireland came into existence in 1992 initially as a pilot project. This was started by disabled people who designed a system in which they were in control of the direction, operation and management of their personal assistance service. However, 30 years on, the personal assistance service is still a pilot project. Disabled people in Ireland have no legal right to a personal assistance service despite national policies that support the deinstitutionalisation of disabled people. In addition, Ireland has signed and ratified the UN Convention on the Rights of Persons with Disabilities. As we all know, Article 19 states that disabled people have the right to live where and with whom they want and have choice, control and a range of supports in the community. Ireland is rich in policy development but we need to work together to implement our policies to ensure the rights of disabled people are upheld.
I will speak briefly about the philosophy of independent living and what exactly a personal assistance service is for many disabled people throughout the country. Independent living is about having the freedom to have the same choices that everyone else has in housing, transportation, education and employment. Independent living is also about choosing what aspects of social, economic and political life we want to participate in. Independent living is about having control over our lives to have a family, to get a job and to participate socially. My supports allow me to be a son, brother, husband, friend and co–worker.
For many disabled people, independent living can best be achieved by the employment of personal assistants to provide supports where needed. The personal assistance service is a tool that allows us to live independently. The personal assistance service enables us to do all the tasks that we cannot do for ourselves. It provides us with the freedom and flexibility to live our lives as we choose. A personal assistant is hired to assist us with a range of day-to-day tasks that we cannot physically do for ourselves. Many of us who use personal assistants say they are an extension of our limbs. Often, they are our eyes or our ears. With a personal assistance service we are in complete control. We direct the personal assistant to carry out tasks inside and outside of the home, including personal care, domestic duties and assisting in day-to-day tasks such as shopping, support in the workplace or socialising. A personal assistant does not look after or care for us. We delegate these tasks to our personal assistants and in doing so we take back control of our lives. A distinct benefit of a personal assistance service is that it reduces our dependence on our family and friends. The confidential relationship that develops between us and our personal assistants allows us to maintain a private life and our dignity. The personal assistance service is often the difference between existing and living for many of us.
To put this into context I will share an example. According to information submitted by the HSE to the Committee on Public Petitions in 2017, 1.51 million service hours were delivered to 2,470 people. However, these figures show that more than 84% of us who received a personal assistance service received less than three hours per day on average, with more than 44% of us in receipt of an average of 42 minutes per day. It is clear that anyone who receives an average of 42 minutes per day is not going to be able to live independently, access education or employment or become involved in meaningful social engagement. Disabled people with reduced services of this nature are unable to live the lives of their choosing. They are often trapped in their own homes without the chance to interact and do the things they want to do in life. They are prone to isolation, exclusion and institutionalisation in the home where they simply exist and not live.
I know the committee has dedicated sessions to deinstitutionalisation but I want to make reference to Wasted Lives. Too many disabled people under the age of 65 are inappropriately placed in nursing homes or do not have the adequate and appropriate supports to live a life of their choosing. If we think about this, can committee members imagine all their choices being taken away? Can they imagine being told when to eat, drink and go to bed and all of their decision making taken away?
We as a national disabled persons' organisation support the philosophy of independent living. Independent living is not just about living in a house or building a house. It is about all the pieces of the jigsaw fitting together. It is about our choices, our control and our dignity and having appropriate and adequate supports to have the choice, dignity and respect to live a life of our choosing.
We, as a disabled persons' organisation, have developed PASNOW, which is a national campaign. In consultation with our members, we have identified five asks. These are to define, legislate, invest, standardise and promote the personal assistance service. We want a universal accepted definition of the personal assistance service that places disabled people at the centre of any service provided and is directed by us to meet our needs to live independent lives. The personal assistance service is about providing us with the necessary supports, inside and outside the homes, to enable us to live a life of choice, dignity and respect. The personal assistance service needs to be separated from home help and home care with its own ring-fenced funding.
Our second ask is to introduce legislation to guarantee us the right to a personal assistance service, as per Article 19 of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. With legislation, however, we need investment to increase the budget for personal assistance services by €12.5 million annually to provide an additional 500,000 hours each year to enable us to lead independent lives.
We want to standardise, promote and introduce a single standard assessment of need across all HSE community healthcare organisation, CHO, areas. This must include the provision and support for independent assessment of need, as per the Disability Act 2005, and the creation of a national standardised system that will allow for portability of services across CHO areas, meeting our social, personal and employment needs with no bureaucratic barriers. Finally, we want to ensure that we are all made aware of the availability of the personal assistance service in order that those who wish to lead their lives independently can access the necessary supports to do so.
In summary, I remind members that independent living is about choice and control. The personal assistance service is about giving disabled people that control. The committee should remember that we ratified the UNCRPD in 2018. We, as a disabled persons' organisation want a system that meets the needs of disabled people, which includes investment and standardisation to legalise the right to protect our rights to live independently. We believe this would be a way to realise and implement Article 19 of the UNCRPD. I would like to take this opportunity to thank all members of the Joint Committee on Disability Matters for listening. I look forward to questions or comments.