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The story so far

For 20 years parent carers and voluntary organisations throughout Bristol have worked together in partnership with the local authorities, helping to shape the services provided for children and young people with disabilities and special needs. These initiatives have been successful in bringing about positive changes for parent carers and their children.

From May 2007 - March 2011, the Government was engaged in a transformation programme for disabled children's services through its Aiming High for Disabled Children initiative.

Aiming High for Disabled Children (AHDC) aimed to ensure that parents were involved at a local level in strategic decision-making about the provision of services that their disabled children need. Involving parents and carers in planning and developing services is the best way of creating cost-effective, responsive services that work for families.

In November 2009, Bristol Parent Carers met for the first time as a new organisation. It held its Launch Event on 21st May 2010, which also marked the official launch of this website. More than 100 people attended the launch, and parent carers set their priorities for participation work in 4 focus group areas. Bristol Parent Carers has successfully completed its first year of work, culminating in its second Participation Event on 15th February 2011 - the progress made in its first year of participation can be found on our What We're Currently Working On pages.

It is our aim to help shape the future together for families of children and young people with disabilities and special needs.

Parent Carer Participation can change things!

Here are some examples of positive outcomes achieved over the last 20 years:

Parent Carer Representation - Parent carers have helped to...

  • Establish Bristol Carers Voice to consult on health and social care issues
  • Consult on education issues through Voluntary Representatives Meetings
  • Review services being commissioned
  • Survey parent carers' needs and develop the Carers Strategy Action Plan
  • Establish specialist working groups to highlight the needs of, and provision for, specific groups (ie. autism, multi-sensory impairment etc).

Health - Parent carers have helped to...

  • Highlight uncoordinated children's services, leading to a review of Children's Health Service provision
  • Consult on Boards investigating issues requiring change
  • Establish the Expert Patient Cource so that parent carers can highlight the needs of their children to medical staff

Social Care - Parent carers have helped to...

  • Highlight the gaps in respite provision, and ensure the needs of those who are unable to access services are now considered
  • Shape the provision of holiday activities, clubs and sports opportunities

Education - Parent carers have helped to...

  • Establish the first specialist autism unit, and outreach support for mainstream schools
  • Review special educational needs' (SEN) provision
  • Highlight the issues for children who cannot have their needs met within the county
  • Shape the plans for changing SEN funding arrangements
  • Develop policies relating to specific conditions (such as syslexia, autism etc)

Transport - Parent carers have helped to...

  • Establish the Transitions project and the Transitions Team, and contribute to the Transitions Steering Group
  • Ensure that Adult Services are aware of and have an extra budget to cover young people transferring from children's services to adult services

National Programs - Parent carers have helped to...

  • Highlight that the needs of disabled children were not being considered in the Every Child Matters program leading to the Every Disabled Child Matters program
  • Consult on reviews (such as the Lamb Enquiry, Ofsted etc)

This work was undertaken by a small number of parent carers acting as representatives for groups of families, who were hindered by the time they had available to attend meetings. The new model of participation should ensure that more parents' voices will be heard in many different ways.

Think how many more positive outcomes can be achieved!

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