Participation Network - Supporting the Public Sector to engage children & young people

What we wanted

In 2000, the Southern Health and Social Services Board (now the Health & Social Care Board) established the Wraparound Project with a view to exploring the needs of disabled children and young people. The Board recognised that disabled children and young people should be actively involved in the development of services and commissioned a participation project which was intended as a pilot project. Barnardo’s  tendered for the work and in may 2002 appointed a worker to develop Sixth Sense, an advocacy group, which would contribute to Children’s Services Planning in the Southern Area.

How we did it

Initially, members of the Armagh Gateway Club between the ages of 12 and 25 years were recruited to the group. The Project Manager delivered capacity building through drama and art and developed an assisted technology suite to enable young people with complex needs to be able to express themselves.

The Project Manager attended a Children’s Services Planning meeting and discussed how the professionals communicated with each other and how they could adjust their language to meet the needs of children and young people with disabilities. The language used at these meetings is now much more accessible to children and young people with disabilities.

The Sixth Sense group held a residential meeting where they were trained in advocacy by VOYPIC (Voice of Young People In Care). The approach is based on the United nations Convention on the Rights of the Child, in particular Article 23 (which addresses the right of disabled young people) and Articles 12 & 13 which consider the participation of children and young people in public decision making. VOYPIC ensured that the training was at a level where everyone, even those with complex learning needs, could participate. The young people’s expectations were initially low but using techniques such as mobile picture phones, the young people were able to take photographs of their experience of access in the Southern Area.

The group subsequently produced a powerpoint presentation for the stakeholders involved in the Wraparound Project. It was agreed that working group on Transition (from children’s to adult services) should be set up and chaired by the young people.

The young people also sit on the Children’s Services Planning Committee.

What they said

There has been a substantial impact on Children’s Services Planning in the Southern Area. These include:

• A change in the ethos of the Wraparound to embrace the participation of disabled children and young people in the planning and development of systems and services for them.
• Disabled children and young people are involved in Children’s Services Planning at a strategic level.
• After a presentation to Paul Goggins, the then Minister for Health and Social Services, an additional £500,000 was allocated to children’s services.
• Children and young people with complex needs are involved in strategic planning.
• Disabled children and young people conduct disability awareness training for both statutory and voluntary bodies.
• Acute services have improved - a Passport system has been developed whereby every disabled child and young person carries a detailed record of their illness, requirements and needs which can be used by medical professionals without having to access their medical records which may not be readily available.  For example, the specifications of essential medical procedures and aids can be easily accessed making diagnosis and treatment simpler and faster.
• Involvement in the Review of Regional Wheelchair Services leading to more efficient provision.

The essential elements of this project have been:

• The involvement of children and young people from the very start of any planning process.
• The availability of “internal champions” – professionals within statutory bodies who can champion the participation of children and young people at the highest level.
• The provision of information in simple language.
• Health professionals had to learn to hold discussions in simpler language that children and young people could grasp.
• It is vital that there is face-to face contact with children and young people and that communication is not conducted through a third party.
• Disabled children and young people should be involved in the development and delivery of awareness training for professionals and service providers.