Good morning, thank you. Today I'm going to talk about an ARC grant that we've

recently won which builds on some previous work that my ... me together with the

rest of my team have been working on. As you know probably from the media the

recognition of the rights of people with intellectual disabilities to have a

quality of life similar to the rest of the population has been gaining momentum

over the last five to 10 years. Australia was a signatory of the United Nations

Convention on the rights of people with disabilities and amongst the principles

that underlay that convention was the right for people to live in the community and

to be citizens and to participate in the community in the same way that other

community members do.

Australia's had antidiscrimination legislation since 1992 and great strides

have been made in terms of removing physical obstacles to participation of people

in the community, things like the new tram stops and low trams, lifts, ramps which

everybody's now familiar with and there's new technology too that supports

people with sensory and communication impairments. There's a whole range of new

speech devices and there's a much broader accessibility of pictures through

ipads and easy carriable devices.

In 2013 there's a major reform of disability services. Over the next four years the

National Disability Insurance Scheme is going to be rolled out across Australia

and the first six pilots sites started in July 2013. This is a major reform that's

going to double the amount of funding to disability services in Australia over the

next few years and the key aim of that reform is to support the independence and the

economic and social participation of people with disabilities.

These policy changes signify new ways of thinking about the role of disability

services as well as community attitudes. The thrust now of disability services

has got to be about participation. The words are active. People with disabilities

have to have a say in their own lives, to be able to exercise choice and control, to be

able to learn, to be able to work and to be able to engage in their own everyday lives.

So the provision of services is really no longer about providing passive care to

people but it's about providing support to people. People with disabilities are

no longer people that we need to feel sorry for or need to be looked after, they're

people that are now fully recognised as citizens and should be able to take part in

society. And the way that can happen is either through direct support to the

individuals or by changing the physical and the social environment in which

people with disabilities live. And you'll all be familiar I guess with the new

images of people with disabilities that you're beginning to see, images of people

being active. And this is an image from the Disability State Plan 2002 to 2013 that

was published in Victoria.

But actually there's very few images of people with more severe or profound

intellectual disability. This is the group of people who don't communicate with

speech, the people that find it hard to take independent action and who require 24

hour support with personal care. It's much harder to imagine what things like

choice and control and participation look like for this group of people and it's

actually this group of people with more severe and profound disabilities who

experience the worst outcomes from disability services. One of our studies that

was published in 2012 looked at residents in group homes for people with

disabilities in six large organisations in Victoria and what we found was this

group of residents with more severe disabilities actually received less staff

support, they had less contact and less assistance from staff and were less

engaged to be involved in their own lives. So what we found was that people who

actually need more support were getting less support.

And a recent yet unpublished study shows that this group of people

over two-thirds of their time was spent doing nothing.

These people lived in group homes where they were staffed 24 hours a day so staff

were there all the time but actually we found that staff only spent 11 minutes in

every hour having contact with these people.

I'm going to show you a clip now which shows you what disengagement looks like for

people with intellectual disabilities. And the first part of this clip are people

who lived in institutions back in the 1960s and '70s. This is what doing nothing

looks like. These people live in group homes in the community in modern-day

Australia. They're also doing nothing. And people are doing life around this guy

in the kitchen, he's certainly not participating. So if you think about that, just

imagine what it would be like for you if you spent two-thirds of your time doing

nothing when in fact staff were paid to support you. In fact the government spent

half of all disability expenditure supporting you in residential

accommodation. So people with more severe and profound intellectual disability

need support to exercise their rights.

There's a very significant body of research that shows that one of the most

significant factors for people with severe and profound intellectual

disability is the quality of staff support that they receive. They rely on staff to

create opportunities for them to be engaged in meaningful activity and to

interact with other people, to experience new things and to exercise choice.

People with severe and profound intellectual disabilities may not be able to

participate in the whole of a task but they can certainly participate in some of a

task. They may not use words to talk but they can certainly communicate and

interact with people. This guy down the bottom is interacting with a shopkeeper

and is being supported to hand over the money for his coffee. He may not be able to

order it but he can participate in that interaction.

People with severe and profound intellectual disabilities do have preferences

if they're given opportunities to experience different things. And they can

communicate if people listen very carefully to their expressions and look and see

what's happening for them. And we know from previous research from one of our

colleagues in the UK that it's not the number of staff that are there, it's what

staff are doing when they're there. And that good quality support is actually no

more expensive than poor quality support.

Person-centred active support is a way of working where staff provide sufficient

support to enable a person to be engaged in meaningful activity and social

relationships. There's a significant body of work that shows that this way of

working by staff leads to high quality of life for people with severe and profound

disabilities. Active support is a way of staff working everyday all day. It's not

about therapy and it's not about having it at specific times, it's a practice ...

evidence-based practice that if staff use leads to better outcomes for this group

of people. And the fundamental idea of person-centred active support is that

every moment has potential. Wherever you are, whatever you're doing a person with

the right support with severe and profound disability can be involved in everyday

activities.

This guy may not be able to walk around the house and he may not be able to put the

washing in the washing machine but he can help to deliver the washing to people's

rooms. This guy may not be able to stand up but he with the right type of bench that's

low enough for him to reach and the right support he can put things away. This

person's getting the right amount of support to be involved in making sandwiches.

The staff aren't taking over and doing things for him, they're supporting him to do

the task. And as you can see this person's clearly communicating their enjoyment

of being engaged in an activity that's been set up for them with the right type of

equipment. And this young woman is using the foot pedal with her hand to control the

sewing machine. So it's about having the right amount of

support and being part of engaged ... part of all everyday activities. It's not

doing all of a task, it's doing part of a task.

Active support as a way of working has been adopted by services in Australia for

some time now but it's not being consistently practised all day every day. In fact

some services have been doing it for eight to 10 years but our researchers found

among six large organisations in Victoria that only one organisation has

consistently high levels of staff doing active support which is much lower than we

know is possible from overseas studies.

So the question then is why if this is an evidence-based practice that we know works

and that if organisations have invested significant amount of money in training

staff, why isn't it working? Why are we spending ... why are people still spending

most of their time doing nothing? So our idea then is to look at the organisational

factors that will support the implementation of active support, to try and

identify what factors are most important in making this happen all day everyday in

influencing the way staff do their job.

We have a number of sort of propositions that we know from some of our research and we

have some early findings from a pilot study that shows that there's some

relationship between frontline practice leadership and active support. We've

developed a measure of frontline practice leadership to enable us to see how good

the frontline leadership is and that's things like coaching, modelling good

practice and the frontline leader bringing to the fore for staff in meetings, in

supervision and in everything that happens during the day the importance of

practice and supporting people to be engaged rather than the importance of being

in the office and doing the paperwork and ticking the boxes.

We also have a sense that there's another factor that's important which is about

the way organisations translate their values into action and whether they do this

consistently, whether there's a coherence through the organisation for example

we've found things like obstacles at the middle level of management in

organisations. So for example in one organisation the finance people thought it

would be a really good idea if they issued cards to the staff so that they could go

shopping at the large supermarkets so they would get discounts, so they could buy

in bulk, so they didn't have to get receipts, so they didn't have to handle money.

Now that was really convenient for the middle managers. The problem is that

administrative decision meant that it took away the opportunity for people with

disabilities who were living in the house to go 'round the corner to do the milk bar

to do small amounts of shopping, to be able to be involved in some of those

interactions. It meant also that people had to go to the large supermarket and they

actually aren't very friendly to people who have autism and who find spaces ...

large, busy spaces really hard to deal with. And when the people moved out of queue

the Department of Human Services provided buses to each group home, six-seater

large buses. It gave a very strong message, we want you to go out in sixes in the

community rather than having much more individualised support to be engaged in

your own life.

So the question is do senior managers understand the importance of practice or are

they just interested in the bottom line? Do they when they come to visit houses look

for things that are clean and tidy, people sitting nice and neatly or are they

looking for people being involved in their own lives? In messy ... messy things

happening? Beds being left unmade until the person's able to be supported to do it

for themselves.

So we have a number of hypotheses about the types of organisational factors that

will influence frontline practice and they relate to practice leadership, to

organisational factors, organisational values and their translation to

recruitment and to job descriptions. So over the next five years we're going to be

working with nine organisations across three states and we're going to try and

track the changes over time in the level of active support that they provide to the

people that they support. We're going to do an annual round of data collection

which will look at the quality of staff support and will look at the outcomes for the

residents but it will also collect data about organisational elements. And this

will enable us to have three outcomes. We'll be able to provide every year an annual

report to the organisations which will provide them feedback about how they're

performing and to help them to reflect on that and to try and improve their performance.

One of the important things about our study is that we're using observational

methods so we're not relying on staff support, we go and we watch and we look at every

moment over a two-hour period about what's happening. And we know that that's much

more effective than relying on staff report. Staff think they're doing a good job

and our research actually shows they're not doing such a good job.

So we're going to be able to provide feedback every year to organisations and in the

long run we're going to be able to identify through a large regression

analysis at the end what are the most important factors that organisations need to

focus on. That will enable us to identify those factors and then to realistically

advocate, to embed the practice of active support in funding agreements so that

the national disability insurance scheme can fund organisations that are providing

effective support, that aren't caring for people but are supporting people to be

engaged. Thank you very much.