Disabled Children's Charter

In 2012 major changes were made to the NHS through the Health and Social Care Act. Commissioning of most health services were shifted to Clinical Commissioning Groups with Health and Wellbeing Boards established to support the cooperation between local authorities and health agencies.

Too often disabled children and their families have been left out of the health planning process, and in light of this, the Every Disabled Child Matters Campaign (EDCM) developed a Charter for Health and Wellbeing Boards. With its seven commitments, this charter was developed to support the Boards meet their responsibilities towards those families with children with special educational needs (SEN) and health conditions.

The seven commitments are:

  1. We have detailed and accurate information on the disabled children and young people living in our area, and provide public information on how we plan to meet their needs

  2. We engage directly with disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board

  3. We engage directly with parent carers of disabled children and young people and their participation is embedded in the work of our Health and Wellbeing Board

  4. We set clear strategic outcomes for our partners to meet in relation to disabled children, young people and their families, monitor progress towards achieving them and hold each other to account

  5. We promote early intervention and support for smooth transitions between children and adult services for disabled children and young people

  6. We work with key partners to strengthen integration between health, social care and education services, and with services provided by wider partners

  7. We provide cohesive governance and leadership across the disabled children and young people’s agenda by linking effectively with key partners

How did the Charter come about?

Each Health and Wellbeing Board Chair was contacted by the EDCM team with the primary ask of signing the Charter to show their commitment to families with children with SEN or a disability. In parallel with their efforts a supporter action was built and disseminated online for supporters to get involved locally. The original letter was sent again six months later for generating further uptake. A year later a second letter was then sent to all Boards who had signed, which asked for evidence as to how they have met the original seven commitments. This information was then collated and example case studies were shared with supporters on the website.

What can be learnt from this project?

The biggest piece of learning came from deciding how to collate solid evidence for each commitment, but in particular commitment 4 - monitoring progress towards setting clear strategic outcomes for commissioning partners to meet in relation to disabled children, young people and their families. Additionally, it became clear that the Local Offer was the main source of health and social care information for disabled children and their families but that it was continually to be updated.

What did the Charter achieve?

A third of all Health and Wellbeing Boards (50) signed the Charter with many showing that they had in place a strategy for the next year evidencing how they plan to meet their commitments to families in the health planning process. The Charter also generated local media buzz, particularly in Salford – a board that had not signed to the Charter. The Salford Star reported that there was no single register of disabled children in the city, a key commitment and urged them to sign following our correspondence with the Board. The Charter was also mentioned in ‘Children with special educational and complex needs - Guidance for Health and Wellbeing Boards’ from the Department for Health with the suggestion that HWBs consider or adopt it as step to ensure they are meeting their responsibilities towards disabled children.