Mr. Damien Walshe:

I thank Ms Gaynor. The personal assistance service is a central component of independent living. Disabled activists in Ireland were one of the first group of disabled people to successfully push and fight for a PAS, and many hundreds of disabled people have led real and productive lives by using this basic tenet of modern social democracy. It has proven cost-effective, liberating and a real marker of social justice for disabled people who need the service.

However, disconcertingly, Ireland does not give disabled people the subjective right to a PAS if they require one. The PAS budget is still combined with the overall home care budget, and there is no standard definition of what a PA is across the community healthcare organisation, CHO, areas and no standard assessment of need. As we witnessed in 2012, there is no commitment to giving us a right to this service and it can be taken away immediately. When we consider the massive social and economically positive outcomes of having a PAS, as the ESRI study mentioned, it begs the question why these issues have not been resolved. For more than 30 years, there have been campaigning, struggles and challenges to the PAS. All the time, these predicaments met with resistance and tenacity from disabled activists, yet still the sword of Damocles perpetually hangs over us.

Despite ILMI and our allies’ continual push for legislation, regulation and definition, successive governments have not meaningfully engaged with the issues. We welcome the research conducted by the ESRI, which aligns with our own research and policies that are informed and led by the wider disability collective. Through a nationwide consultation with our members, it is clear that some service providers are moving away from the original ideal started by disabled activists in 1992. This successful model was based on disabled people directing our PAS to enable us to live full lives of self-determination. Many feel the PAS is moving towards a system focused on compliance, regulation and bureaucracy.

ILMI has been running a campaign, PAS NOW, for investing in and creating a system of personal assistance that meets the needs of disabled people. Our campaign has been about five actions required to address the deficiencies that have been slowly but persistently occurring within the PAS. To do this, we need to have an agreed definition of the PAS that places us at the centre of any service provided and is directed by us to meet our need to live independent lives, separated from home help and home care, with its own ring-fenced budget. We need to standardise how the need for a PAS is assessed and ensure there are no barriers to disabled people moving from one area to another for work, education or social reasons.

We need to see a budgetary increase in the budget year on year for personal assistance, which can be achieved by redirecting funds from services that do not support the inclusion of disabled people in society. We need personal assistance to be promoted so that disabled people who could benefit from support are aware that it is available. We need to introduce legislation to guarantee us the right to a personal assistance service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities.

The PAS budget is a tiny fraction of the overall HSE budget and a minuscule amount of the billions spent on disability services but the effects it has, in most cases, are life-changing. Ireland is not living up to its ideals of a modern social democracy. It is not treating all its citizens equally, and it is not upholding the fundamental ideals of the UNCRPD, which it has signed. Every local authority in the State has supported our call for a right to personal assistance. That is democracy.

Because of the lack of clarity in relation to personal assistance services, we are now seeing several issues. Service providers have moved away from the initial ethos of the service and it is being more and more aligned to a care role; with disabled people being less involved in the selection, rota or management of their service. Similarly, there is a challenge about personal assistant, PA, recruitment and retention. These issues are rooted in the lack of a legal right to personal assistance. In this vacuum, there is no standard training programme for PAs nor is there any regular assessment of the services.

One example is the lack of continuity for young disabled people who may have a PA in third level education, but once they leave education they are either told to reapply or that there are no PA hours available. It seems that we are often giving young disabled people a taste of independence and then removing it from them.