Getting personal

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How a person-centred approach has helped her daughter with autism to thrive

Jennie is a happy and fulfilled 23-year-old woman, living in her own flat and engaging in a wide variety of activities, from art classes and Zumba, to horse riding and dog walking. Jennie was diagnosed with autism at the age of three.

Until her diagnosis, it was incredibly difficult to get Jennie any kind of support. Things quickly began to change, though, once her condition was diagnosed by a specialist and we were soon able to access all of the services that Jennie was, and is, entitled to.

Growing up

Once Jennie was enrolled at a specialist school, she thrived. When she reached the age of thirteen, we started to think about her future – what would she do after college and where would she live? Until this point, everyone had been very focused on her education and, as was typical at the time, all of her annual reviews had revolved around this issue.

We didn’t want Jennie to have to fit into an existing service that wasn’t suited to her needs and we started to question how we could plan to make sure that she would be able to live an independent life. I also started to think about what we might need to put in place for Jennie to make sure she’d always be supported, even if we weren’t able to take the lead.

We set up an essential lifestyle plan (ELP) for Jennie. This is a living document that shows what’s important to Jennie and how she is best supported. To begin with, this was very education focused, and stayed in her home and school communication book so it was easily accessible for those who know Jennie best to add in comments and suggestions. As she’s grown up, though, it has served to support Jennie in her own home and remains an important, evolving document to this day.

Support and progress

When Jennie reached 14, we set up a circle of support for her, a group of people who come together to change her life positively and make plans for the future. We meet regularly and invite Jennie’s service provider and support workers to some of the meetings, to ensure we are all working well together for Jennie.

Setting up the circle of support has been life changing for Jennie and for me. I have been able to share the responsibilities associated with caring for Jennie, and it’s meant that we’ve been able to hold person-centred reviews for her. These have brought together Jennie and all of the experts supporting her in one room, allowing us to look at Jennie’s life holistically and put action plans in place.

To make sure Jennie could, and would, get involved from her very first person-centred review, we told her it was a celebration of her life so far, and we created invitations to send to everyone who we wanted to be involved. On the day, we kept her interested by indulging her with some of her favourite things, including snacks and treats, arts and crafts and DVDs.

By holding one school-led and one additional review each year, we’ve been able to get feedback on her progress every six months. The regularity and quality of this feedback has helped all of those involved in Jennie’s life to work together in different ways over the years to get the best outcomes for Jennie.

Transitions

As Jennie neared the end of her education we created a PATH (planning alternative tomorrows with hope) for her, using a person-centred plan that focused on what her future could look like and how to get her there.

We continued to hold regular circle of support meetings, and changed the focus of these slightly to move ahead with planning Jennie’s personal budget, working out how it could be used and allocated to find her the right place to live and get the support she requires to live the life she wants.

We decided that she would be best suited to having her own flat, and we put together a housing specification including essential and desirable elements that should be considered when searching for her perfect property.

We also put together Jennie’s perfect week using a community map to show places she already liked to go and where we thought she may like to go in the future. This also fed into the housing specification.

Selecting Jennie’s team

To make sure that Jennie would continue to be well supported, we invested time in selecting the best team for her. Using a carefully selected service provider, we put out an advert introducing Jennie and outlining the level of support she would need, as well as the skills and personality traits that would make applicants the perfect match.

Jennie was involved in the interview process and where there were tough decisions to be made between candidates, the way that they interacted with Jennie was a crucial factor. Once we had her team in place, I helped to give them autism-specific training (as that’s my professional role) and also helped them to better understand Jennie.

Selecting Jennie’s team was challenging. Initially, I was concerned that the staff wouldn’t know what to do if there was a problem, but I quickly grew to trust them. It’s clear to see now how much her team enjoy spending time with Jennie. Some team members are only a few years older than Jennie and are more like her friends or older sisters.

Together we have created visual supports in her flat, such as perfect week timetables which get changed every Sunday so she can see her week ahead, and social stories which help Jennie understand what she can expect in defined situations. Before she left home, we also made video clips of Jennie doing things such as brushing her teeth properly, which staff can use if she needs extra prompting. As she can have wakeful nights, Jennie also has a visual sleep schedule including a routine designed to calm her down before bed.

What’s next?

Two years on, we’ve created a new PATH for Jennie, as her first was very education focused, and Jennie joined in, drawing on the board for the first time. We also talked about her doing some voluntary dog walking, which she continues to enjoy today.

Jennie remains a keen artist and has already exhibited some of her work. Within the circle of support we’ve discussed the possibility of her setting up her own social enterprise so that she can sell some of her framed work, as well as other arts and crafts items like greetings cards.

I’m a lot less worried about the future now. Together with the rest of the circle of support, I feel I’ve done the very best I can for Jennie – she has her independence and a fulfilled life – and when I’m not here I know the circle will make sure this continues.

Further information

Suzie Franklin is co-author of Personalisation in Practice, and is a Family Liaison and Support Worker at the Together Trust’s Inscape House School – a specialist school for young people with autism spectrum conditions and other social communication difficulties:
www.togethertrust.org.uk

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