Viper is a three-year research project funded by The Big Lottery Fund to explore the most effective ways of enabling young disabled people’s participation in development of services in England. The project is led by a consortium of the NCB Research Centre, The Council for Disabled Children, the Alliance for Inclusive Education, and the Children’s Society.
The project aims to:
- Explore the ways in which young disabled people are currently involved in decisions by services
- Explore the impacts and benefits of young disabled people’s participation
- Identify good practice and understand what works in supporting participation
- Develop tools and guidance to support young disabled people’s participation in decisions about services.
A number of different research methods are being used to find out what is already known about young disabled people’s participation in services and to understand the barriers to involving young people in decisions. These include a literature review, an online consultation of organisations and services and in-depth case studies.
At the heart of the project is a group of 16 young disabled people, aged 12 to 22, from across
England. They meet regularly to develop their research skills and to advise the project team. In addition to the research sessions, the Viper young researchers have also done work on identity and disability rights.
"I’ve really enjoyed taking part in different activities, getting to meet lots of new people, learning about rights as a disabled person and how people can facilitate participation," said Becky, a young Viper researcher.
"We bring something different to the research," commented Jo, another Viper young researcher.
"By getting involved it’s showing people that we are able to do what other people can do. Also, by helping to plan the services it’s getting us involved in what essentially will affect us."
They are currently conducting fieldwork for the research alongside project researchers, including interviewing projects across England, and have been involved in developing questions to ask managers, project workers and young people using services.
"I think it’s important to ask young disabled people about their views on services because services need to be accessible to all people… so everyone can use those services," said Tom, another member of the Viper research team.
Viper stands for Voice, Inclusion, Participation Empowerment, Research. The young researchers chose the name for the project as it reflected all that they hope the project is; and we are proud to unveil the project logo, designed by Lavinia Scott, a young disabled person in partnership with the young researchers.
"Young people have a voice too. It’s really important that they give us a say," added Viper member Hugh.
- For more information, to sign up to receive e-bulletins and to access a range of project partner resources, visit www.councilfordisabledchildren.org.uk/viper
What I get from Viper
I’m Sam, one of the young researchers involved with the Viper project.
I’m going to write about our last meeting, but don’t worry, it’s not like those boring meetings with the local authority. I’m from a beautiful, peaceful (boring!) village on the edge of the Lake District. It’s fine for holidays, but when you’ve lived here all your life London is a great relief. I travelled down with my super-cool helper and mate, Chloe and my mum on the train.
Next morning, we set off early to the Viper meeting. We discussed ideas about what we want from
our services – for example, age-appropriate activities rather than everyone under 19 being lumped together. I was sent a leaflet from my local authority inviting me on a bus trip to Ducky Park Farm. Apart from it obviously being not for teenagers, who would want to hang around with a bus full of people you don’t know?
One of the best things about going to Viper is sharing experiences. It can feel like you’re the only
kid who ever had trouble with learning support, teachers, or other kids when you go to a mainstream school. You soon find out you’re not.
Another great thing is meeting all the cool young adults with disabilities who run the project. Meeting them has inspired me to think "I can do that!!"
- Sam is a Viper young researcher
Participation still patchy for young disabled people
The Viper project literature review provides an overview of evidence on young disabled people’s participation in strategic decision making. The review found there are few studies that directly focus on this issue.
Evidence indicates that young disabled people have fewer opportunities to participate than their non-disabled peers; children with complex communication needs, disabled children from ethnic minority groups and younger disabled children appear to have even fewer.
Many young disabled people are denied opportunities to participate in decisions about their own care and so lack the skills and confidence to take part in strategic decision making. Where young disabled people have participated in organisational decision making, it is usually through consultation or membership of youth forums; there are few examples of participation in higher levels of decision making.
The review suggests that young disabled people’s participation remains patchy and further research to support good practice is needed. Evidence of young disabled people’s involvement in strategic forums and whether this leads to changes on the ground is also lacking. Finally, there is a need for evidence on how budgetary cuts are impacting on participation, and whether young disabled people are being consulted about service cuts.
How services are involving young disabled people
Earlier this year the NCB Research Centre carried out a national online survey of organisations to gather evidence on how services involve young disabled people in decision making and the impact of their participation. Three quarters of the 245 respondents had recently involved young disabled people in decision making.
As well as improving service delivery, there was a high level of agreement among respondents
that participation increased the confidence and skills of young people; increased awareness among young people of their rights; and improved inclusion in their organisation, project or service. The time needed to undertake participation and a lack of funding and resources were the biggest barriers to effectively involving young disabled people in decisions. Other barriers mentioned included a lack of skills, knowledge or confidence among staff.
Just over a quarter of respondents indicated they involve young disabled people in planning new services. However, young people were more likely to be involved in individual and everyday decisions than decision making at a strategic level. While our findings cannot claim to be representative of all participation work with young disabled people across England, they do provide a snapshot in a currently under-researched area. A full analysis of findings will be published in spring 2012.
Fieldwork to develop case studies
Young researchers and project researchers from the Viper project are currently carrying out interviews and focus groups to find out what works in successfully involving young disabled people in decision making about the development of services.
They are visiting eight projects and services across England to speak to staff and young disabled people to find out what works when involving young disabled people in decision making. This element of the project will develop in-depth case studies on young disabled people’s participation.
The young researchers have been heavily involved in preparing for the case study research, including selecting case studies and designing the questions for managers, project workers and young disabled people.
Over the past few months, they have taken part in research training workshops, covering research ethics, different research methods and interview skills.
On visits to the projects and services the young researchers will take the lead role, co-facilitate or observe interviews and focus groups. Each young researcher will be partnered with a project researcher throughout the process to support them in their work.
Fieldwork is going on till the spring of 2012. The young researchers will then start to analyse data from the interviews and focus groups, and together with the project researchers, will co-produce a report on the findings for publication in the autumn of 2012. Keep an eye on our website for regular updates on the research and for our final report when it is published later in the year.
