Issues discussed at the December 2009 meeting of the All Wales Forum on Issues for Disabled Children and Young People.

Presentation about Cerebra by David Williams Parent Support Assistance: The Charity Cerebra was set up to help improve the lives of children with brain related conditions through research and education while supporting the children and their carers.

Presentation by Zoe Richards from Learning Disability Wales who have been commissioned by the Welsh Assembly Government to produce children and young people friendly documents explaining the process of transition to adulthood: In 2007, two reports were published by National Assembly Committees which looked at the issue of transition to adulthood for young disabled people. These were the third part of the Education and Lifelong Learning Committee’s review on additional learning needs which was on transition and the Equality Committee’s review on services for disabled children which was entitled "Why are disabled children always left until last?" Following these reports the Transition in Action group coordinated a conference on transition to adulthood which was funded by the Welsh Assembly Government. This conference was led by young disabled people themselves. To prepare for the conference two focus groups were held on the subject of transition with the aim of finding out what the young people’s experiences were of the process of transition to adulthood. The main issue that came out of the focus groups were that the young people were not really aware of what transition was and although the young people had contributed in many meetings which discussed their future, they felt that they had not been listened to. The Welsh Assembly Government then set up a group called the Transition External Reference Steering Group to look at implementing the recommendations from the two reports mentioned above and taking into account the comments made by the disabled young people at the conference.

Leaflets: To complement the work being undertaken by the Transition Steering Group, the Welsh Assembly Government has commissioned Learning Disability Wales to produce a leaflet explaining the process of transition to adulthood for children and young people. A Guide for Professionals will be produced by the Welsh Centre for Learning Disabilities and the Guide for Parents is being written by SNAP. Zoe has met with many groups of young people to discuss what should be in the leaflet. The young people said that they wanted a range of leaflets which provided different information at different times. These will look at :-

• What is transition? The aim will be to answer five key questions and encourage young people to think about what their life will look like in five years time.
• A leaflet signposting young people to services and one giving good practice examples around Wales. The leaflets will be illustrated by pictures to show young people how they will go through the transition process.
• An easy read pictorial leaflet will also be produced. The leaflets will be launched at the Transition Key Working Conference led by CCNUK on March 4^th in Builth Wells.

A discussion of sections of two reports recently published which are relevant to disabled children and young people

• Getting it Right 2009 – a 5 year action plan for Wales setting out key priorities and actions to be undertaken by the Welsh Assembly Government in response to the Concluding Observations of the UN Committee on the Rights of the Child 2008
• Services for Children and Young People with Emotional and Mental Health Needs prepared by Wales Audit Office and Healthcare Inspectorate Wales.

Update on the Disabled Children Matter Wales Campaign

At the DCMW open meeting in the summer, it was agreed that as more organisations would be involved in steering the Campaign, a more formal structure is needed. Subsequently at the November Steering Group meeting, Keith Bowen, Contact a Family was elected as Chair and Liz Walker, CCNUK elected as Secretary and a small working group was appointed to write up a Constitution. Ten organisations are now represented on the steering group – Children in Wales, Contact a Family, Mencap Cymru, Learning Disability Wales, Cerebra, Action for Children, Barnardo's, Family Fund, Scope Cymru and NDCS Cymru (National Deaf Children’s Society). Meetings took place between representatives of the Campaign and the Minister for Children, Jane Hutt. This was a positive meeting with the Campaign being informed that the Rights to Action Task group would be chaired by David Hawker, Director General of DCELLS. Campaign representatives also met the Children’s Commissioner, Keith Towler. Keith said that he had met with many disabled children and young people during his tour of Wales and was keen to continue contact with the Campaign to highlight common issues. An article entitled The Language of Priorities written by Keith Bowen on disabled children and published in Society was also distributed in the meeting.

Information Exchange 

Members also shared information about what is happening in each of their organisations.