Dr. Selina McCoy:

I thank the committee for inviting us to present evidence on personal assistance supports in Ireland. We are drawing on a large-scale, multi-phase study on personal assistance supports in Ireland that we carried out in 2020 and 2021, with the findings published in two articles. The research was conducted as part of a joint ESRI, National Disability Authority, NDA, research programme to explore important issues facing disabled people in Ireland today.

Our research reflects on the current personal assistance structures in place and on the experiences of disabled people as they negotiate and engage with personal assistance services that are intended to support their independent living. It draws on a two-stage multi-method study with both institutional stakeholders involved in service provision and disabled people using personal assistance services. As the research developed, it increasingly drew on a capability approach, focusing on the voices, preferences and experiences of personal assistance service users and their reflections on the role of personal assistance supports in supporting the functioning they want to achieve.

In line with Irish policy, we understand a personal assistant to be someone employed by a person with a disability to enable him or her to live an independent life. The personal assistant provides assistance, at the discretion and direction of the person with the disability, thus promoting choice and control for the person with the disability to live independently. However, most personal assistants are employed by service provider organisations on behalf of service users using the funding allocated to that service user. Personal assistance has long been a key support for Irish people with physical and sensory disabilities, but prior research shows that Ireland lacks national standards for allocation, provision and data collection for evaluation of the service.

The first phase of our research considered aspects of personal assistance provision from the perspective of insiders, gathering the views and experiences of service providers and State-based institutional stakeholders regarding the personal assistance system and its challenges. Drawing on a series of qualitative interviews and a survey of HSE disability managers, the findings highlighted critical issues relating to underfunding, inadequate administrative data records and variation in allocation and provision across the country.

This variation stretches across funding arrangements, needs assessment procedures, principles of provision, accountability requirements and the working conditions of the assistants. The findings give us an understanding of likely issues facing service users in accessing and directing their personal assistance, with particular issues around the evaluation of needs and how this informs allocation.

This first phase provides a valuable backdrop to the second phase, where we address a particular gap in understanding the experiences of disabled people, completing a large-scale mixed-method study with personal assistance service users. Overall, the evidence shows satisfaction among many service users but suggests that systemic shortfalls have a clear detrimental effect on the functioning and capabilities valued by the participants regarding their ability to participate in everyday social and economic activities. The findings of this study provide valuable insights into what good personal assistance means for disabled people’s everyday lives and what Irish personal assistance service users want to see change within the system.

The evidence shows the impact of inadequate support on people’s day-to-day lives. Most of those surveyed wanted a broader range of supports, with some effectively confined to their homes due to the lack of personal assistance hours. Others were reliant on unpaid support from family and friends. As well as dissatisfaction over the number of hours, there were calls for greater control over when and for what their HSE-funded hours could be used. More positively, there was a high level of satisfaction with the quality of existing personal assistance, and especially with respondents’ current service provider and-or personal assistants. Overall, however, the survey points to a significant appetite for change among personal assistance service users and makes clear the impact of inadequate support across their lives.

As supports such as personal assistance are reformed and improved, it is vital that disabled people are meaningfully included in the design and evaluation of services they rely on. The research sought to model this approach by involving disabled people in the design of the study through an advisory group. The research highlights aspects of personal assistance, existing or potential, particularly valued by service users. Having a personal assistant, PA, was felt by many to be necessary to enter and succeed in employment and education. Indeed, earlier ESRI research shows Ireland has one of the lowest levels of employment among disabled people across the EU. Currently, however, PA hours are not widely used for either employment or education. This was partly a result of explicit direction from some service providers, and from the HSE in some areas, that PA hours could not be used for employment, partly due to an overall shortage of hours and partly due to issues finding PAs with the skills needed in the workplace or learning environment.

Insufficient hours were a huge barrier to social engagement, leaving many respondents isolated. When asked about what else they would like supports for, respondents mentioned things most people take for granted, such as trips to the cinema, shops or a café. In particular, leaving the house for events during the evening or at weekends was not possible for many. The relationship with the personal assistant was central to respondents’ perceptions of personal assistance. Managing the personal and professional relationship was challenging, but when it worked it was immensely rewarding. Personal assistants’ working conditions, especially their pay, hours and lack of progression opportunities, indirectly impacted service users as they made it difficult to hire and retain suitable people.

This research shows the importance of adequate and effective personal assistance for disabled people’s quality of life. Disabled people face much worse outcomes than non-disabled people across a range of areas, such as employment, education and social engagement, and supports like personal assistance can help tackle that gap. At present, however, the supports do not go far enough to allow most service users to live a full and independent life.