Scarecrow competitions, Women’s Institute meetings and exercise classes. These are the kind of events usually hosted by the village hall in Wyboston, Bedfordshire.
But on one spring afternoon in 2010 the hall held a distinctly different event – the first workshop to develop a tool that could change how autism services are evaluated.The workshop, attended by around 40 service users and professionals, was one of three that culminated in the launch this year of The Spectrum Star, the first outcomes-measurement tool to help assess the progress and changing needs and abilities of people with autism while they are in care.
I have been fortunate enough to be involved in the planning and piloting of the Spectrum Star. We now have a tool that professionals supporting people with autism can utilize and that service users can understand and engage with. The Spectrum Star project began because Brookdale Care realised that existing assessment tools for individuals with autism were inadequate for service users within Brookale Care’s rehabilitation hospital (Milton Park Hospital) and its residential care and supported living services.
Until now autism professionals have had to use a generic outcome-measurement tool e.g. for people with mental health problems or learning disabilities. But these are inaccurate for people with autistic spectrum conditions. Plus, The Autism Treatment Evaluation Checklist (ATEC), released in 1999, felt outdated, medicalised, and overly concerned with diagnostic categories.
Commissioners were also emphasising to us how they needed a specific autism outcome measurement tool to assess how service users they referred to us were working through their care pathway.
It was time for innovation. And the Brookdale team wanted to lead it. To assist, we turned to Triangle Consulting, which produced the respected Outcomes Star. Currently there are 14 Outcomes Stars for supporting and measuring change with individuals with mental health needs, learning disabilities and drug and alcohol addictions.
The Outcomes Star allows service users to work alongside professionals in rating their abilities from one to ten stages on “Journey of Change” areas.
Either independently, or with a professional, a service user marks each rating point. After all areas have been completed, a line joins all the points, so creating a star shape which transforms as a person moves through the ratings points. The Star can also be computer-generated.
The challenge for Triangle and Brookdale Care was to collaborate with service users to devise a Star appropriate for people with autistic spectrum conditions. The Wyboston Village Hall workshop was the first event of this challenge.
Groups of eight people sat around five tables brain-storming and sharing ideas. The focus was on coming up with Journey of Change areas applicable to people with autistic spectrum conditions. This focus included discussing descriptions of what would be required for people to move from point one to 10 on each Journey of Change area. What was vital throughout the whole research process was reflecting on how service users understood such Journey of Change areas. It was they, afterall, who were going to be asked to complete The Star.
There were Journey of Change areas, such as ‘Life Skills’ that came up continuously, and many hours was spent revising language to describe what was required to progress on each area.
For example, a Journey of Change area listed on the first Spectrum Star draft was ‘Interests and Work’. But we subsequently agreed this was of course inappropriate for people not in work. Plus, it was felt that ‘interests’ was also inappropriate for people with autism as it might be seen to legitimise fixed interests and repetitive behaviour which can prevent someone engaging in a meaningful past-time. We therefore changed the Journey of Change area to ‘Time and Activity’.We also chose not to have ‘challenging behaviour’ – with its focus on the negative – as an area. We preferred instead ‘sensory differences’ and ‘socially responsible behaviour’ as Journey of Change areas. Learning to be socially responsible conveys a sense of embarking upon a proactive positive pursuit – and includes managing impulses, living within the law and maintaining boundaries.
It should be noted that throughout the whole process many contributors felt wary about trying to mould service users to fit into a non-autistic world.
But, all in all, we felt service users had genuine ownership of the Spectrum Star research. They spoke out, challenged, disagreed, and suggested every step of the way.
In the end, we opted for nine Journey of Change areas of Spectrum Star. These were: Physical health; Living skills and self-care; Well-being and self-esteem; Sensory differences; Communication; Social skills; Relationships; Socially responsible behaviour; Time and activities.
The next step was to pilot the Star – and again users of Brookdale Care’s services played a key role.
We asked 92 people, together with a professional, to pilot the Star. Because it was new to everybody I spent much time discussing and explaining the Star with senior staff. Many phone calls and emails were exchanged!
But this was all part of the learning process. Indeed, all feedback was valuable as it enabled us to examine how the Star was perceived, and what needed to be improved.One lesson we learned was that it took different people varying times to complete the Star. While one person could complete all the Journey of Change areas in one hour, it might take another person with more severe disabilities one hour to complete just one area. But this, I think, is the beauty and value of the Spectrum Star. It is person-centred and collaborative, so allows people to move at their own pace time to process, understand, discuss and answer.
For the pilot I received and collated two Star scores per person, with three months between each score. Three months was a short period as it is recommended the Star be repeated every six months. But the primary purpose was to understand the mechanism of implementing the Star in practice.
We have also appreciated that while the Star can benefit an individual, it can also be used at an organizational level to identify what a provider might be particular good at – perhaps improving people’s well-being and self-esteem – and what is less good at.
People may ask how reliable and valid is The Spectrum Star? Firstly, it is based on previous Outcomes Star research and implementation. Plus, the descriptions of each stage of each arm are detailed, reflecting the thought that has gone into it. Nevertheless, it will always be important to record who – professional or service user – completes in The Star.
For example, one service user I work with insisted on completing the Star on his own and scored himself a 10 on every area! We knew he was not. So we had to return to square one, and assist him on his insight and help him know where realistically he was on each area.
But The Spectrum Star feels valid because it allows a shared and accessible language between clients and professionals, and can facilitate on-going discussions around how people are improving or not.
Importantly, the tool can also encourage people to have difficult-to-have conversations, such as addressing inappropriate behaviour.
Because of these factors, we expect the Spectrum Star to be widely taken up by services – from hospitals to residential care to schools – all around the country and abroad.
Increasingly commissioners want to see outcomes provided by services, particularly in the present environment of tight NHS budgets and moves towards payment by results. Essentially, The Spectrum Star can help commissioners evaluate whether or not money is well spent.
As for us, The Star has quickly become ingrained in the provision culture at Milton Park Hospital, where I work, and our resource centre has been re-named the ‘Star Centre’ as each activity is designed to support people through their care pathway.
And to think it’s all down to the hard work we initiated at our local village hall!
‘Services will have keen interest in Spectrum Star’
by Anya Ustaszewski, member of the NICE Autism Clinical Guidelines Development Group
It’s felt like a long time waiting for an outcomes-measurement tool for autism. Even though de-institutionalisation, community-based services, and person-centred policies have been around for many years, some of the paperwork has not caught up. The Spectrum Star goes some way to remedying this.
Most importantly, The Spectrum Star is collaborative, rather than something that is done to people. Plus its easy to understand. Clients have to be involved, even if guidance is sometimes needed.
Notably, Spectrum Star meets what’s being asked for in the Autism Act and the NICE guidelines on autism. Services across the country will, I am sure, be taking a keen interest in the Spectrum Star. They need it.
To learn more about the Spectrum Star, and how it can work for your service, you can receive a free Organisation and User Guide. Call 01480 474747