Disabled young people have demanded their rights to have their voices heard when decisions are made about their lives.
Young disabled campaigners from across England came to London this week for the launch of Hear Us Out!, a report detailing the findings of a three-year project that has examined their participation in making decisions about the services they use.
The research for the VIPER (Voice, Inclusion, Participation, Empowerment, Research) project took place over three years, with 16 disabled young people working as co-researchers and taking part in every stage.
Sam, one of the VIPERs, said: “I think it is important to involve disabled children and young people… because mainstream services such as health, education and transport affect our lives as well.”
Jhon, another VIPER, added: “Participation is about valuing and showing respect for what disabled young people say and making sure it is not tokenistic, which does happen, with disabled young people involved just to tick a box, not to see how they can improve what is working and what is not working.”
Jhon said that improving participation in decision-making would improve disabled young people’s quality of life by “changing the services that we use every day”.
Disabled young people should already have rights to participate in decisions and issues that affect them, through UK legislation and the UN conventions on both children’s rights and the rights of disabled people.
Among Hear Us Out!’s recommendations, it calls for services to increase opportunities for participation and to ensure the right support is available, while also calling for government action, for example within the children and families bill currently being considered by parliament.
The report suggests that basic access requirements – that would allow young people to participate – are often ignored, breaching both UK legislation and the two UN conventions.
The VIPERs also say in the report that they want to receive proper feedback about the difference their participation has made to services.
The research included a survey of more than 200 organisations, projects and services which work with disabled young people to find out how they involve them in decision-making, as well as in-depth research into eight health, social care and education organisations and services.
Marti, one of the co-chairs of the launch event, said she had learned from the three-year project “to be proud of my identity as a disabled person… and to fight for others’ rights.”
And she said she hoped the 16 VIPERs would now spread the message that they have “a right to be heard” across the country.
“I want to work with disabled children and young people and make sure that they do not experience the sorts of things I have had to go through, and do not have to learn the lessons the hard way.”
She said she has had problems securing the support she needs through school, college, and now at university, which she said was “still a work in progress”.
Jhon said: “The main problem for me was school, and being respected and being able to tell the school, ‘this is where I need support.’”
He said it was interesting that there was no “norm” across the country when it came to disabled young people’s participation.
He added: “Some places seem to be doing participation great and disabled young people are involved and listened to. Other places, you have not got a chance of having your voice heard.”
The lottery-funded project was delivered in partnership with the Alliance for Inclusive Education, The Children’s Society, the Council for Disabled Children and the National Children’s Bureau Research Centre.
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