Enabling disabled people with support needs to employ personal assistants (PAs) – rather than relying on traditional care workers – can be empowering and liberating, but relationships with PAs “can sometimes go wrong”, according to new research.
The Personal Assistance Relationships study, led by the disabled academic Professor Tom Shakespeare (pictured), highlights the “complex” and “variable” nature of personal assistance relationships, and warns that they involve “a dynamic interplay of emotions, ethics and power”.
He told an event in London, held to launch the University of East Anglia research, that “personal assistance works” and that it provides disabled people with freedom and control.
But he added: “It is not straightforward, particularly for people who don’t come from the tradition of the disabled people’s movement.”
He told the launch event that personal assistance was “one of the revolutionary innovations of the disabled people’s movement”, alongside the concept of independent living.
As part of the study, the researchers interviewed 27 disabled employers of PAs, and three parents of PA employers, as well as 28 PAs.
In England, an estimated 65,000 disabled people employ 145,000 PAs.
The aim of the research – also carried out by Dr Andrea Stockl and Dr Tom Porter* – was to highlight “what makes a good PA relationship and how it can go wrong”.
Many disabled employers they spoke to said that the relationship with the PA could not be too formal.
One said: “They’re doing quite personal things like showering you.
“They’ve got to be people you trust intimately and people that you know, very, very well, and because of that you’ve got that relationship going… I don’t differentiate between the friendship side of it and the work side of it. The two go together as far as I’m concerned.”
Another employer of PAs said that the need to disclose personal information to their PAs meant it was unrealistic to expect a distinction between “personal” and “professional”.
She said: “People know things about me that they wouldn’t know in any other circumstances.”
One PA said: “It’s not as if you are relating to your colleague at work or your boss at work, you are part of their daily routine and you get to know their most personal needs… you are in the person’s house and into their lives completely.”
But nearly all the employers and PAs who spoke to the researchers said they had encountered problems because of the informal nature of their relationships.
One PA said: “I was her sole employee, and everything rested on me and that wasn’t a good feeling.
“I just got way too involved with her. I feel like I would do things differently now.”
Many of those interviewed spoke of how there had been at least some conflict in their relationships.
One employer told the researchers about a PA who had struggled to make the transition from working in residential care to becoming a PA.
She said: “She was quite challenging to work with. She got very upset because in her experience working in a care home she was used to having bleach and certain materials locked away in a cupboard, and of course this being a private house I just had my bleach under the sink…
“Her whole attitude was very much that she knew what she was doing and I didn’t know what I was doing.”
The study calls for both disabled employers of PAs and their personal assistants to be given the “skills and knowledge” they need to make their relationships work.
Relationships with PAs are inevitably “emotionally complex”, the study concludes, and adds: “Emotions arise because the connections between the disabled person and his or her personal assistant(s) are often long-term, intimate working relationships.”
Shakespeare, Porter and Stockl say that this needs to be recognised by both employers and PAs.
It is also crucial to set boundaries, making it clear how the relationship between PA and employer will work in practice, as PAs may not want to share their private life, while the workplace is also the PA employer’s home.
And they say that conflict within personal assistance relationships is common. It is vital, they say, for both employers and PAs to be given “the skills and knowledge they need to manage these relationships effectively”.
They make a number of recommendations for disabled people employing PAs, for PAs themselves, and for policy-makers and public bodies.
Among those recommendations is a call for greater efforts to bring people into the PA workforce, as a lack of choice for disabled people can force them to employ unsuitable PAs.
They also call for funding for training for both PAs and their employers, which could include training PAs in the social model of disability, and peer support – again, for both PAs and employers – to help with the potential isolation caused by personal assistance, and for both employers and PAs to have access to independent legal advice.
*He can be contacted by email at [email protected]