Inadequate Personal Assistance supports preventing many disabled people from living full and independent life

A large survey of disabled people in receipt of personal assistance (PA) has made clear the impact of inadequate support on people’s day-to-day lives. A personal assistant provides assistance, at the discretion and direction of the disabled person to enable them to live an independent life. Most of those surveyed wanted a broader range of supports, with some effectively confined to their homes due to their lack of PA 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 PA, and especially with respondents’ current service provider and/or personal assistants. Overall, the survey points to a significant appetite for change among PA service users and makes clear the impact of inadequate support across their lives.

The research was conducted as part of an ESRI-National Disability Authority (NDA) research programme to explore important issues facing disabled people in Ireland today. As supports like PA 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 PA, existing or potential, particularly valued by service users:

• Having a PA was felt by many to be necessary to enter and succeed in employment & education. Currently, however, PA hours are not widely used for either. 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 to do with 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 like 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 PA. 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.

Eamonn Carroll, a post-doctoral researcher at the ESRI and an author of the article said:

“This research really 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 the areas of employment, education and social engagement, and supports like personal assistance can help tackle that gap. At the moment, though, the supports do not go far enough to allow most service users to live a full and independent life.”

Aideen Hartney, Director of the NDA, said that “supporting independent living for disabled people is at the heart of the Convention on the Rights of Persons with Disabilities, which Ireland ratified in 2018. I welcome this important paper as it captures the lived experience of those using PA services and highlights their barriers to achieving independence and full inclusion in society, issues that must be addressed to fulfil our obligations under the Convention. The NDA has previously completed significant work to support the Department of Health and the HSE to move towards a more person-centred model of service, and this research contributes important evidence to advance this journey.”

Bernard O’Regan, the HSE’s Head of Operations for Disability Services said that “The HSE welcomes this publication which adds significantly to understanding how PA is allocated and used across the services provided by the HSE and funded by it through a range of Service providers.  The report clearly sets out how important this type of support is to disabled people in living an independent life and in supporting them to participate in community life as an equal citizen.  The report also, and importantly, describes the inconsistencies experienced by disabled people in accessing PA supports and the limitations in how those supports might be used.  This report will be used by the HSE through a Working Group being established to improve this important service, as well as making a valuable contribution to the service planning process.  The number of PA hours has been increased in recent National Service Plans and there will be further increases in 2023.  This increased investment by Government is welcome, while at the same time the HSE leads the work to improve how the resource is allocated and used to provide the essential support for people to live an independent life.”

James Casey, from Independent Living Movement Ireland, says "Irish disabled people were one of the first users of a Personal Assistance Service in Europe, yet 35 years later we are one of the last modern EU countries to give disabled people a right to this service. ILMI, as an authentic Disabled People’s Organisation, welcomes this ERSI research on Personal Assistance Services. The research aligns with our call to legislate, regulate and define this service that is crucial to live a life of self-determination. Over the past three years, ILMI has engaged with every local authority in the country, every one of which supports our call for a right to a personal assistance service, if required, by disabled people."