Skip to 0 minutes and 2 secondsMAN: FutureLearn. [THEME MUSIC] UNSW Australia. What makes a good personal assistant?

Skip to 0 minutes and 12 secondsTOM SHAKESPEARE: So the support worker, or care worker, or personal assistant that works with a person with disabilities. Now we don't pay that person very much. We might not think much of them. But actually, it's one of the most important jobs-- one of the most difficult, in some ways, jobs. Because you need to be able to help when it's needed, but not thrust help on somebody when it's not needed. So you need to be able to hold back and come forward. You need to be able to give help in ways that are not demeaning and undermining of dignity. So if I have to have a lot of help, I might feel pretty bad about that.

Skip to 0 minutes and 49 secondsBut if you give me the help in ways where I don't feel that you're being oh ever so lovely and I need to be ever so grateful, or you don't make a big thing of it, then perhaps that help can be given in ways which are part of normal life, taken for granted. I think a personal service worker has to be discreet, has to be able to negotiate boundaries, has to be respectful of somebody's body, their property, their time, their space, their friends. And I think that those are difficult things. However, mostly, people with disabilities can address those things-- and if not, perhaps somebody else can advocate for them-- so that it can be communicated and worked out.

Skip to 1 minute and 35 secondsAnd I think if there's good communication-- doesn't need to be talked about for hours and hours, but just checking in, "Is that OK?" "Is that what you want?"-- then that can help the service worker learn and get it right. And I think we don't want to exploit the worker. We don't want to exploit the disabled person. Ideally, we want a dyad where both people feel empowered, feel this is working for them, and the satisfaction for the worker who empowers the disabled person that they're working for, enables them, must be immense. They can go home thinking, "OK Fred, Jane, Farooq was enabled to participate in society today because of me. I got paid for it, sure.

Skip to 2 minutes and 23 secondsBut what I brought to it was not just value for money, it was compassion and connection, and that's what disabled people want.

Case study: personal support

In this step we explore the one-on-one support provided by a support worker or personal assistant which enables a disabled person to have choice and control in their life.

As we’ve already seen, everybody needs different types of support. As Antoni pointed out in the previous step, one-on-one support has historically been provided by family. The disability rights movement, and in particular the Independent Living Movement, advocated that people with impairments should be able to buy the supports they need outside of the family, to allow more freedom and autonomy.

In the video above, Tom Shakespeare explains some of the most desired qualities in a support worker. These things are not based so much on what the support worker can do but rather how they do it. In other words, Tom describes values that a support worker should have, including integrity and discretion. You’ll notice that these are quite similar to the values that Vivienne articulated in Step 4.6 What does support look like today?.

Tom also emphasises the need for communication between the disabled person and the support worker — a process of “checking in”, where there is mutual respect so that both people are empowered and neither exploited. This echoes Mel’s ideas from Step 3.5, where she described the importance of listening to people, and giving them space and time to reflect. For people with complex communication needs (CCN), personal support must involve people developing communication partnerships where the person has effective tools for communication and their support workers understand and use these tools effectively.

The approach Tom describes mostly refers to people with impairments needing physical supports, where — as Mel has said — a support worker might act as someone’s hands or legs. But what of people with cognitive impairments? Or people who have been labelled as having a psychiatric disability?

Some argue that the support worker approach is useful for people with cognitive disabilities who may require support with day-to-day living skills and relationships. People with cognitive disabilities may require supports around planning, managing money or personal care skills. For example, for people with intellectual or developmental disabilities the idea of a Circle of Support — a group of volunteers organised to meet regularly and support someone to identify and achieve their goals — has been useful in some contexts.

Whether or not support comes in the form of a support worker, the idea that the support is “person-centred” underpins the support worker model. By “person-centred”, we mean that the disabled person is at the centre of any decision that affects their lives. As Mel described in Step 4.2, for her, person-centred means employing and managing her own support workers. But for other people it is harder to express what they want. We will explore some of these challenges in the next step.

Talking points

  • What values do you think it might be important for a personal support worker to have? Why?
  • Do you think a support worker approach is useful only for people with physical disability? Or do you see possible benefits for people with other forms of impairment?

In the next step, we explore the importance of communication partners for those who are non-verbal or have behaviours of concern (also known as challenging behaviours).

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This video is from the free online course:

Disability and a Good Life: Working with Disability

UNSW Sydney

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