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).