Oireachtas Joint and Select Committees

Thursday, 8 July 2021

Joint Oireachtas Committee on Disability Matters

Resourcing of Personal Assistance Services: Discussion

Photo of Violet-Anne WynneViolet-Anne Wynne (Clare, Sinn Fein) | Oireachtas source

I wish each of our witnesses a good morning. We are indebted to them for their contributions to the meeting, which will inform our work. Our committee has been tasked with accelerating the transition to a social model, person-centred and rights-based approach to supporting disabled people in living independent and full lives.

I will make several observations and ask several questions. A member of the HSE is not present today, which might have been an oversight. This discussion would have benefited from the opinions of a representative of the HSE.

I have several concerns about the assessment of need in order to qualify for participation in the pilot. This is a right that was enshrined in the Disability Act 2005, and disabled people have reached out to me to say that after years spent battling to obtain their current services, they do not want to be reassessed, which is understandable. Why do we believe it is okay to reassess disabled people when they already fought an uphill battle, with a great deal of bureaucracy and jumping through hoops, to prove something? The discrimination that pervades these assessments of need is patronising and ableist. Disabled people are expected to rank their daily activities between essential and non-essential and to differentiate between personal care, community participation and domestic and social needs in a way that a non-disabled person would never be. For example, if a disabled person's social needs are more urgent than personal care, the same hours will not be provided if he or she mentions at assessment stage that he or she has a partner who can provide support for those needs. This could have a devastating impact on the individual's primary relationships. Suspicion and scarcity are at the root of these assessments. The subtext seems to be one of "Give them an inch and they will take a mile". We must strive for self-assessment with full alignment to will and preference policies must be striven for. Mr. Cawley made reference to this.

It is striking that the personalised budget demonstration is being piloted again despite the fact that it was first piloted in 1992 with EU funding through a programme called INCARE. It is unproductive and wasteful to allow progress on personal assistance services and personalised budgets to stagnate by not relying on direct lived experience.

Members of Áiseanna Tacaíochta - I struggle with the pronunciation, for which I apologise - have told the committee that they have sought funding to extend their life-changing broker model of personal assistance but have been refused. Between 2008 and 2018, there was no increase in funding for the provision of personal assistance. Since then, there has been a marginal increase, but one that is barely worth mentioning, as 84% of PAS users receive less than three hours per day. Even more disheartening, 44% receive less than 42 minutes per day. It is difficult to imagine trying to reduce the day's activities into 42 minutes. Would someone choose to have a shower, go for a walk, clean the house or do the shopping? It does not leave people with any time for hobbies, work, education or parenting. It tells us a great deal about our expectations of disabled people's lives.

A disabled friend of mine recently called trying to access service provision as akin to being on parole for life for the crime of having a disability. My friend must not violate the conditions of parole, in that she must be available for reviews and risk assessments and prove her impairment repeatedly. If her quality of life improves too much, she is threatened with losing her vital services and going back to square one. It is a life sentence without parole, as she would say. This is a stark but effective description of the disempowerment of disabled people.

My first question is directed to each of the witnesses. How can we as a committee offer our support to them in ensuring that the Government takes their experience seriously and does not delay the inevitable by issuing pilot after pilot?

What are Áiseanna Tacaíochta's main concerns about the personalised budget demonstration pilot's roll-out and how it meets the standards of the social model, the will and preference policy, the UNCRPD and empowerment? Given its representatives' direct lived experience and their knowledge of what is involved in the assessment, do they believe it is invasive and infringes on privacy rights by leaving disabled people open to a higher level of questioning and inspection than non-disabled people would ever be expected to put up with? Have they spoken to anyone who has been selected for the pilot and what has that person's experience been to date?

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