(This article was first published in the Tullamore Tribune week ending 20 December 2019. Many thanks to Ger Scully, editor of the Tribune, for this).
On the 19 November 2019, the possibility of legislating for Personal Assistance as a legal right was debated by the Dáil. The motion was brought forward by Donegal TD Thomas Pringle from Independents For Change, who worked in collaboration with Independent Living Movement Ireland (ILMI) in promoting the right for disabled people to access Personal Assistance in Ireland.
The Personal Assistance Service and Independent Living are intertwined. In their truest form, Personal Assistants are not “carers”, nor do they have the right to make decisions on behalf of the disabled people they work for. A Personal Assistant has been defined by many as “my arms and my legs”, in other words, the role of a Personal Assistant is to assist with or perform tasks that the disabled person (known as a “Leader”) cannot do for him or herself. The Leader is considered to be the expert in their own needs and directs the Personal Assistant on what he/she wants done. When the service is delivered properly, the PA does not “look after” the Leader, but rather enables him or her to live a fulfilling life – enter employment, access education, enjoy social events and raise a family – depending on the Leader’s own life goals.
In theory, a Leader’s service is customised to suit his or her own lifestyle. However, in reality, only a select few disabled people in Ireland are enjoying the full benefits of Independent Living. Since the onset of the recession in 2008 the lack of financial resources, coupled with a growing demand for a Personal Assistant Service, has led to overmedicalised assessments and more stringent criteria, leaving many disabled people with little or no service. Emphasis has been placed on “high dependency needs” such as feeding, showering and dressing. While this might make sense to the powers that be, in reality this can lead to a depressingly low quality of life for the Leader concerned, being all dressed up and nowhere to go.
Many Leaders make a distinction between a “home-help” service and a PA service. A home help works to a rota provided by a care organisation and merely assists clients with basic tasks such as Personal Care and feeding. Often, a client has little or no say in what tasks they can be assisted with, nor do they have control over who delivers these tasks. It is not uncommon for a “client” to be assisted by many different people, and a disabled person might not know who is assisting them from one day to the next. Conversely, a Personal Assistant is recruited by the Leader themselves, and matching personalities, as well as a willingness to carry out certain tasks, is a crucial element to the success of any PA/Leader relationship.
The original intention behind the service was that the Leader could dictate what they wanted to do and when, just like every other person in this country. Moreover, the philosophy of independent living espouses that the Leader should choose who assists them, what they need assistance with, and when. A distinct benefit of the PA service is that it reduces our reliance on our family and friends so that we can enjoy a relationship as equals, not as “carer” and “cared for”.
However, in spite of the ratification of the United Nations Convention on the Rights of People with Disabilities (UNCPRD), Personal Assistant Services are not currently a right for disabled people in Ireland. Consequently, this leaves the service vulnerable to the constant threat of cutbacks, as the government illustrated in 2012 when it endeavoured to eradicate the entire service overnight. People power alone, in the form of demonstrations outside the Dáil saved the service, but the PA service in its current form is not allowing disabled people to enjoy a reasonable or enjoyable quality of life. A report published by ILMI in 2017 conveyed that nearly half of people in receipt of PA services were getting the equivalent of 45 minutes a day. This is entirely unacceptable and clearly illustrates the need to legislate for PA Services.
Therefore, the motion which was brought before the Dáil and subsequently passed unanimously was a hugely historic day for disabled people in Ireland. It heralded a shift away from the notion of disabled people as passive recipients of care to people who had human rights and who deserved access to the tools that enable them to participate equally in society. For the first time, Personal Assistance was debated in the Dáil using the language of rights, signalling a shift away from the misperception that disabled people are merely passive recipients of care.
Alas, although this small battle has been won (and how sweet the victory does taste!) the work for those who want equality for disabled people is far from over. We cannot afford to be complacent or to take anything for granted. Now is the time to educate people, to create awareness of the importance of our PA services and to ensure that our government delivers on its promise to make independent living a basic human right.