Disability Bill doesn't give me rights I deserve
The past few months have been personally fulfilling as I discovered the meaning of independence. For the first time in my life, I have 100 per cent of the decision-making power. In the past, other people played a role in determining what I did, when I did it and how I did it. The provision of a personal assistant has given me this autonomy. I just completed a BA degree and I plan to start an LLB degree in September at NUI, Galway. My interest in the law stems largely from a desire to ensure that rights and privileges of people with disabilities have a clear expression in Irish law.
Inadequate service provision has been a significant talking point within the disability community since the Government's commitment to enact a disability bill. The provision of such services can be likened to the provision of basic needs, such as electricity. The capacity of a person with disabilities may be as dependent on the services of a personal assistant as yours is on electricity. No doubt aware of this reality, the drafters of the Irish Constitution provided in Article 45.4.1 that, in order to safeguard the economic interests of weaker members of society, the State needs to provide adequate resources.
Despite the clarity of this provision, a lack of resources has proven a sometimes impenetrable barrier to my living a full and active life. Without resources and someone to depend on, I would be left at home without stimulation, left to soil myself and even left without food and water. Until just a few weeks prior to my Department of Education funding being exhausted, this horrifying situation could have become a reality. Fortunately, these funds magically appeared with little time to spare. But this caused great anxiety and distress during my final year exams.
The concept of not having a personal assistant is unthinkable for me. I am now as independent as I can be. I am educationally independent and the personal assistant gives me the arms and legs to be able to do the things I need to. If I did not have a personal assistant, I would have to move back to my parents' home and they would become my de facto personal assistants. Wouldn't most of you bristle at the thought of losing some of your independence after working hard and completing a degree? I sure would.
Under the Disability Bill 2004, the funds to be allocated for service provision are subject to the amount of resources available to the State at that particular period in time. Funding has never appeared to me to be proportionate to people's needs. If it was, I would have been allocated a full-time personal assistant on the day I started university, so that I would be able to lead an independent life. The Minister responsible for funding allocation does not have to justify or change budgets according to section 5.2 of the Disability Bill 2004. This is absurd. The need for specific services requires that more than one person evaluate the situation, and also that evaluations occur on an ongoing basis, not just once a year, to ensure that all disabled persons receive the services they need.
Many of the "rights" that have been given to people with disabilities are at the Minister's discretion. As such, they are not rights at all. I had hoped Ireland had moved on from "who you know and what you know" to a more rights-based political framework. This does not appear to be the case in the Disability Bill 2004. It is an inadequate piece of legislation that comes nowhere near giving me, and all Irish citizens with disabilities, the rights which we deserve and to which we are Constitutionally entitled.