Learning Disability Today
Supporting professionals working in learning disability and autism services

Home is where the heart is

Home is where the heart isJohn had spent all his adult life in hospitals and care homes, but thanks to the active support approach he has been able to move into his own flat. James Powell reports:

John, 52, sits on his sofa in his flat drinking a cup of tea like anyone would do at 7pm on a Tuesday night in October. He looks happy and at home because that’s where he is – home.

This is still a relatively new feeling for John. It was only earlier this year that, for the first time in his life, he was able to move into his own home.

This move was the culmination of a 13-year journey for John since he moved out of hospital and began to be supported in the community by learning disability support provider Avenues Group.

John is an example of the outcomes active support can produce. Active support is an approach which Avenues has implemented across its organisation that aims to increase choice, promote independence and reduce challenging behaviour in people with learning disabilities.

John’s story

John moved out of Eastry Hospital in 1999 and into residential care in Canterbury, Kent, where he was supported by Avenues. He was one of several people with challenging behaviour who left long-stay hospitals in the southeast around this time; Avenues was effectively set up to cope with the need to provide people like John with the support they required.

Juliet Morrell is Avenues’ positive behaviour support adviser and has worked with John since his first day with the organisation. “Where he is today shows what people can achieve if they are given respect and dignity,” she says. “I think John is remarkable and I’ve seen him face his difficulties over many years. His transformation has had a huge impact on me and my work.”

When Morrell first met John she was a support worker and fairly new to the organisation. She can see the huge change in John from when he first moved into the community: “When he left hospital, John could be quite aggressive and had some difficult behaviour we had to deal with. Active support has helped by increasing his engagement levels, which has enabled him to become more independent.

“As John’s frustration and aggression improved over time, he was more able to access community activities and make more choices about what he wanted to do, until he was ready for a place of his own.

“In the early days he would be driven about in a car, but wouldn’t get out. Now he has chosen his own motability car, chooses where he wants to go and enjoys his local surroundings and community activities.

“It shows how anyone responds to their own environment. John loves attention and we were able to meet his needs with more consistently high levels of support and creating a more engaging environment for him.”

Moving on

Earlier this year it was felt that John was ready to move into his own flat. He still receives significant support from Avenues, but it’s less intense as he’s more skilled and independent than he was in previous years.

Gill Greenstreet is one of John’s support workers and has also worked with him since 1999. She has been impressed with how John has adapted to having his own flat. “He’s had to get used to a new environment; having his own place and the new social boundaries that go with it. He’s adapted really well and is doing so much more for himself now. I’ve loved seeing him grow in his own place, making his own decisions and choices.”

For instance, John now gets his own money from the bank, and does his own shopping, washing and ironing. He also enjoys table tennis, active sports and going to discos at the local leisure centre.

Active support

Active support has helped John to achieve this. Active support is a way of supporting people to take part in meaningful, everyday activities, regardless of their level of disability. The principle is that staff provide just enough support to people to take part in all everyday tasks. Active support focuses on improving the quality of daily life as experienced by people with learning disabilities, particularly those with severe or profound learning disabilities. It is focused on each individual, and on what they want to do.

Avenues first introduced active support in 2006. Andrea Wiggins, practice development lead for Avenues, explains: “In 2006, we committed to improve the quality of life of everyone we support by implementing active support. We can demonstrate this approach consistently improves the quality of life for the people we support by getting them to be more engaged in activities and choices about their lives.”

The results were recently acknowledged in a report in the Journal of Applied Research in Intellectual Disabilities. Avenues worked with the University of Kent’s Tizard Centre – one of the leading UK academic groups working in learning disability and community care – in examining the benefits and impact of the active support approach by looking at the lives of 30 people Avenues supports.

The report showed that increases in the amount and quality of support people were getting led to “significant increases in engagement, participation and choice-making opportunities and a significant reduction in challenging behaviour”.

As a result of introducing active support, Avenues has seen engagement in meaningful activities increase from 25% to 43% and challenging behaviour reduce from 21% to 6% in the people it supports.

Dr Julie Beadle-Brown, reader in intellectual and developmental disabilities at the Tizard Centre, says: “It is clear that the introduction of person-centred active support in Avenues has been very successful and has made positive differences to the lives of the people they support.”

Tizard research has also revealed Avenues supports a larger percentage of people with higher support needs than many other organisations. It helps to demonstrate the life-changing impact of active support because it’s helped many people, like John, to gain more independence and break down boundaries to engagement in their local community.

Training benefits

Senior managers from Avenues also train to gain a certificate to deliver active support training, which demonstrates they can carry out in-depth planning
and put it into practice. Avenues also provides work placements for students from the Tizard Centre.

The process of implementing active support and imbedding it in the fabric of the organisation has involved a huge commitment from all levels, according to Wiggins. “Even the most senior managers at Avenues have trained as trainers with the Tizard Centre to show they are qualified to deliver active support and have been videoed delivering active support to someone with challenging needs. It is an example of the emphasis we place on the approach; everyone has to learn the theory and demonstrate they can do it – not just talk about it!

“Everyone Avenues supports with a learning disability has had their support team trained in active support. It’s an investment in people – we brought in active support purely to improve the quality of life for the people we support.”

It’s not just people supported who get something out of it. Research has shown that 74% of employees at Avenues enjoyed working with active support and were likely to stay with the organisation because it gave them a more rewarding experience.

Avenues is one of only two organisations that uses active support extensively and it has sent the Department of Health its research on it to show the benefits in the wake of the Winterbourne View scandal.

But behind all the positive feedback and research, it is really about John and hundreds of people like him whose lives have been improved by active support.

About the author

James Powell is PR manager for the Avenues Group.

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