VIPER (meaning voice, inclusion, participation, empowerment and research) was a three-year project funded by the Big Lottery Fund to research young disabled people's participation in decisions about services.
The project was delivered by a consortium of organisations that included CDC, NCB, The Children's Society and the Alliance for Inclusive Education and a team of disabled young researchers (the VIPERS) recruited specifcally to support the project. We set out to research disabled children and young people’s participation in decision-making about local services with the aim to improve services used by disabled children and young people in England.
The ethos of this project started with the principle that all young disabled people have the same rights as young non-disabled people to participate in decisions and issues that affect them. A rights based approach challenges the view that young disabled people need extra care and protection that would be considered unacceptable for non disabled young people. This view disempowers young disabled people and limits their right to choice and control in their lives.
A key principle for this research and the partnership was the social model of disability and all project activities adopted this approach. A social model of disability approach places the responsibility of removing the barriers with society and NOT with the young disabled person. This has meant that the research focused on identifying and removing the attitudinal, physical, economic and social barriers that prevent young disabled people from participating in decision making. These barriers are created by negative attitudes in society towards people with impairments or differences.
How did the research project work?
The project involved a large research programe. We reviewed existing research to establish what was already known about disabled children and young people’s participation then carried out a consultation exercise with organisations working with disabled children and young people to look at current practices. All of the Viper researchers were given opportunities to take part in all aspects of the research and a choice about how much or how little they got involved in each stage of the project. For a minority, attending the meetings was all that they wanted to do. But for most, they chose to do much more and we tailored opportunities to their individual interests. All Vipers stayed involved in the project from beginning to end – a period of three years commitment.
Hear about VIPER from Jo, who was part of the project:
We carried out qualitative research with eight organisations and services to explore how disabled young people can successfully and meaningfully participate in decision-making about services, organisations and policies. We used our survey results to help identify services for the qualitative research. We looked for services that used original ways to involve disabled children and young people, and where participation was making a difference.
We shortlisted 21 possible sites, and Vipers gave their views about which of these they were most interested in investigating. Staff researchers carried out telephone interviews used this along with the Vipers ratings and other information to select the final 8 services that we would work with.
What did we find?
Our research findings suggested that:
- Many disabled young people are still being excluded from participation and decision making opportunities
- Disabled young people's participation is not fully embedded in strategic, service level or individual decision making
- Basic access needs to support disabled young people's participation are not being met
- There is a lack of feedback and understanding of the impact of disabled young people's participation.
We worked with Vipers to prioritise the research findings and recommendations for change, which fell into 4 themes: lack of aspiration, accessibility, inclusion and feedback and impact. You can read the full report, Hear us Out, using the link at the end of this page.
If more services took account of young disabled people views in decision making we would have better and more effective services. Currently young disabled people are not having the opportunity to have their say and this needs to change.
Rebecca, Young Viper Researcher
What did we learn?
VIPER was an important piece of work because of the levels of participation by the Vipers in the research. It gave the most comprehensive picture to date and an understanding of who, where and how disabled children and young people are participating. It allowed us to produce a set of standards of what good quality participation for disabled children and young people looks like – co-produced with young disabled people - and the project was acknowledged by Baroness Tanni Grey-Thompson.
It was not without its challenges in terms of balancing inclusive participative research with sometimes inflexible project outcomes. This research presents new evidence on disabled children and young people’s participation, but hasn’t uncovered anything that we didn’t know already about the barriers they face. It is disappointing that despite many national and local initiatives to improve participation opportunities, those that do exist are still short term, adult-led and not always inclusive.
Going forward we hope that the publication of the research findings and the recommendations created by the Vipers, will generate opportunities to influence policy and see a new legal obligation on service providers at all levels to support the real and long term participation of young disabled people.