Disability Special Interest Group Annual Conference 2019

Journey to de-congregation- where are we now? – Social Care Ireland

 Jessica Gough (ÁT Leader)  Account

On 24th October 2019, I had the pleasure of representing ÁT at Social Care Ireland’s Disability Special Interest Group Annual Conference. The theme of the conference was the journey to de-congregation for people with disabilities in Ireland. Throughout the day, each speaker gave an overview of and insight into how far we have come in Ireland in our journey towards the de-congregation of people with disabilities, based on either their own personal experiences or experiences in working in the disability services sector.

When the time came for me to give my presentation on ÁT’s Direct Payment Model, I began by giving some background information on áT(when it was founded and by whom, and why it was founded) and emphasised that ÁT is an organisation led by people with disabilities for people with disabilities. I then highlighted ÁT’s aim to support and empower people with disabilities to live with the independence, choice and freedom that they are entitled to, and ÁT’s goal to make Independent Living accessible to everyone and to establish it as a recognised right for people with disabilities.

Later, I described the structure of the Direct Payments Model, how the Leaders are always at the centre of the model and, most importantly, how the model is designed to enable the Leaders to live their lives on their own terms.  I also spoke about the benefits of the model for Leaders, the benefits for society and the outcomes of the model for policy. While emphasising the numerous benefits of the model (e.g. choice (moving from dependency to empowerment), I drew on my own personal experiences to illustrate how the Direct Payments Model offers a wonderful alternative to traditional service provision in Ireland. I spoke about how I, as a Leader, can maximise my personal assistance hours to fit in with my life, using my personalised budget through the Direct Payments Model, something that I could not do with traditional service provision. Although I highlighted the numerous benefits of the model, I also outlined the need to establish a legal framework for the Direct Payment Model in order to reduce the high administrative burden that Leaders face when setting up and running their own company. I highlighted the need to establish a simplified model going forward and spoke about how this could possibly be done based on the outcomes of the government demonstration projects (2019-2021) which will examine three different ways of providing payments for personalised budgets to people with disabilities (1. a direct payment to the individual 2. a direct payment to the individual through a service provider 3. a direct payment through a broker – ÁT).

I also referred to the high praise for the Direct Payments Model from Professor Theresia Degener, Chair of the United Nations Committee on the Rights of Persons with Disabilities who said that the NUIG research published in 2018 on the ÁT Model of Direct Payments was an “excellent evaluation of ÁT Model of direct payment [and] will help the Irish government to fulfil its duties under Article 19 of the CRPD”.

I went on to conclude my presentation as I began it, with reference to Martin Naughton. I quoted Martin as he once wrote “We … believe that every person with a disability should have a choice about the way their services are provided, and the right to ensure that the services they do receive are uniquely personal to their individuality.  Our objective is that every Leader has complete control over their service.  In light of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) we feel that the time is right to forge forward with this work and hope that the Áiseanna Tacaíochta model will become a model for Europe also.  This is our dream.  We would like you to help us make it a reality.”

Finally, I outlined how Martin’s dream to make the ÁT model a model for Europe is of great personal significance to me as an ÁT Leader and person with a disability. Both during and after my third level studies, I availed of my right to free movement within the EU as I lived, studied and worked in three different countries (France, Spain and Austria). I spoke of the wonderful benefits of availing of such opportunities, but also the significant challenges I faced as a person with a disability simply trying to avail of personal assistant services and secure accessible accommodation in three different countries with the EU. I outlined how I thought it would be far more beneficial and more encouraging for people with disabilities to exercise their right to freedom of movement within the EU if there was a direct payments model that could be used for this purpose throughout the EU, not just in individual member states. As Ireland’s Erasmus Student Ambassador for the 25th anniversary of the Erasmus Programme in 2012 and as a person with a disability, I have spoken about my personal experiences of living, studying and working abroad on numerous occasions, and I always hope to encourage more people with disabilities to do the same if they so wish, in spite of the challenges that they may face along the way. Although a lot of progress has been made in the provision of services for people with disability and the journey towards independent living for all, there is still a long way to go. And, as Martin Naughton said, “the time is right to forge forward with this work” and we need to look at how to make it easier for people with disabilities to exercise their right to free movement in Europe going forward. And, making the ÁT model a model for Europe would be an excellent way to start.