Mr. Owen Collumb:

I thank the Chairman. I, along with my colleagues present, wish to thank the committee for this opportunity to make our representation. I will now make a number of points to give some background to our previous submission.

Áiseanna Tacaíochta’s, ÁT, mission statement is to provide leadership and support in Ireland to empower disabled people to direct their own lives and enjoy the same freedoms, choices, control and opportunities their non-disabled counterparts take for granted. As disabled people, we need daily personal support to carry out all our daily activities and routines necessary to live an ordinary life in our own homes. To do this, we need the support and assistance of other people. We call these people our personal assistants and we call ourselves "leaders".

We employ our own personal assistants and direct their work through our independent companies we have set up for this purpose. Áiseanna Tacaíochta acts as an intermediary or broker between each of the leader's companies and the funders, that is, the HSE, to set up a direct payment to our companies. This brokership model enables us to move from a service delivery model, such as residential care, to choosing and managing our own service, which is a personal assistant service.

Everything we do is underpinned by the philosophy of independent living and the social model of disability. True independent living allows individuals to custom-design their own supports based on their own individual needs, capabilities and aspirations and in doing so, it contributes to the development of a more equal and just society for everyone. We believe leaders are the best experts on their own lives and it is important that their expertise is listened to and valued.

The availability of direct payment options in this country is a hugely important step to have rights and independence and be equally recognised as disabled people. Áiseanna Tacaíochta commissioned National University of Ireland, Galway, to conduct research into our model. The overwhelming conclusion was that it was quite literally life changing for those whohad the ability to take up this opportunity.

One of our strategic objectives as a peer-led organisation is to lobby appropriate stakeholders to make our model more readily available nationally and to ensure that leaders who undertake the ÁT process will be facilitated by Government to move to full independence.

As a committee, we are well aware of Article 19 of the UN Convention on the Rights of Persons with Disabilities, which deals with living independently and being included in the community. It states that parties to the convention recognise the equal right of all disabled people to live in the community and have choices equal to others, and shall take effective and appropriate measures to facilitate the full enjoyment by people with disabilities of this right.

As we work towards universal availability of the direct payments, ÁT has demonstrated to the HSE the benefits of our model, which has been accepted nationally within the HSE. On this basis, we requested additional funding to create more places to support new leaders all over the country in getting a direct payment. This request has been denied in the context of the ongoing personalised budgets demonstration projects. These projects are now significantly behind schedule by more than three years, however, having initially been intended to report in June 2020.

To achieve full independence, ÁT provides training and support to leaders to establish and manage their own service. Once leaders are experienced and proficient in this, it is our view that they should be facilitated to move to complete independence and sign their own service level agreement with the HSE rather than the brokership agreement. This facility is currently denied to them if they wish to have it.

We now make a number of recommendations going forward. First, we call for the immediate removal of restrictions on leaders to move to full independence, entitling them to leave a broker and be in receipt of their funding directly from HSE. This could be accommodated via the current demonstration project structures. This would, however, require the immediate implementation of the demonstration projects in a much more comprehensive manner than is currently the case.

We call for immediate action to make direct payments available to all leaders who desire to choose direct payments for themselves. We have been waiting too long for the HSE demonstration projects to complete their evaluation. Leaders are in situations today where their freedom to choose is being denied, which is an infringement of their basic human rights under Article 19 of the UNCRPD. An interim solution is to make more funding available to organisations such as ÁT, which can, in the short- to medium-term, begin to increase capacity to support more leaders. This can be done against the backdrop of the continuing demonstration projects, with some agreement in place that leaders could migrate to one of the appropriate models that emerge from the demonstration projects.

We wish to incorporate capacity-building, in the form of a peer support group, and independent living training and its principles in the demonstration projects in order to enable less able leaders or potential leaders to become more self confident and to succeed in using the direct payment. Finally, we would like to change terminology in the committee's communications from "people with disabilities" to "disabled people".