5 Feb 2013

logos of four partner organisations: NCB, The Children's Society, Council for Disabled Children, and The Alliance for Inclusive Education

Disabled young people are being denied the right to have a say in how local services, such as education, health and leisure are being developed and delivered, reveals new research released today

The VIPER (Voice, Inclusion, Participation, Empowerment and Research) research, carried out by a group of 16 disabled young people, looked at their involvement in decision-making and the barriers that prevent them from having a say.

The young researchers worked in partnership with the Alliance for Inclusive Education (ALLFIE), The Children’s Society, the Council for Disabled Children and the National Children’s Bureau Research Centre. 

Young disabled people are not having their say

Their findings highlight how disabled young people are systematically excluded from sharing their views on the services they rely on and use every day. This is despite numerous initiatives to promote their participation in local decision-making. Many of the young disabled people involved in the research feel local participation opportunities are, at best, tokenistic.

Rebecca, a young disabled VIPER researcher, said: 'If more services took account of young disabled people’s 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.'

The young VIPER researchers have produced a set of recommendations for national government and local services. The aim is to challenge the current lack of support for disabled young people to participate in decision making.


To ensure that young disabled people’s opinions are at the centre of developing and delivering local services, the recommendations include:

  • Giving disabled young people’s participation a clear mandate in the Children and Families Bill, by placing it at the centre of the special educational needs and disability (SEND) reforms.
  • Involving disabled young people in decisions about services from the very beginning, not once decisions are already made.
  • Asking central government to promote how services can use existing laws and guidance to support disabled young people’s participation. For example, the Equality Act Public Sector Equality Duty, UN Convention on the Rights of the Child, and UN Convention on the Rights of Persons with Disabilities.

Tara Flood, Director of ALLFIE said: 'It is clear from the VIPER research findings that there is still some real resistance from service providers to listening to young disabled people in terms of what support they want. We hope the recommendations will persuade providers to see the value in including young disabled people in decision making.'


For further information

Contact the NCB press office by telephone 020 7843 6047 (out-of-office hours: 07721 097 033) or by email, media@ncb.org.uk.

Notes to editors

  1. ‘VIPER’ stands for Voice, Inclusion, Participation, Empowerment and Research. A group of 16 young disabled people work as joint researchers on this project and chose the name for the project to describe what they want to achieve for other disabled young people. The ‘VIPERs’ are a diverse group in age, impairment group, location and background, with few having any research experience before this project started. They met regularly to undertake bespoke research training, participated in every stage of the research and made decisions about prioritising recommendations for change.
  2. The research was carried out using a range of methods including a literature review, an online survey of organisations working with disabled children and young people and a series of interviews with young disabled people, project workers and strategic managers in eight local authorities in England. The research took place between July 2010 and September 2012.
  3. This research consisted of a survey of 204 organisations, 28 interviews with project staff and senior managers, eight focus groups with disabled young people and an online survey of schools in one local authority. 
  4. VIPER is a three-year project funded by the Big Lottery, and delivered in partnership by the National Children’s Bureau Research Centre, the Alliance for Inclusive Education, The Council for Disabled Children and The Children’s Society. The project is part of the Big Lottery Fund research programme.
  5. In this project, the partnership is specifically researching disabled young people’s participation in decisions about service development. Participation is a process where groups or individuals can influence decision-making and bring about change.
  6. More information about the government’s SEND reform proposals and the Education Select Committees recommendations can be found here.
  7. The research findings indicate that:
  • Many disabled young people are still being excluded from decision making opportunities
  • Disabled young people’s participation is not fully embedded in decisions about their care and support; how services run; or how services are designed and commissioned
  • Disabled young people’s access needs are often not being met. This prevents them from being able to take part in decision making opportunities
  • There is a lack of feedback and understanding of the positive impact of disabled young people’s participation in decision making.