Health and Wellbeing Boards not prepared for new responsibilities to disabled children

Thursday 26th April 2013

Campaigners warn that Health and Wellbeing Boards across England may not be prepared for the challenges they face in meeting disabled children and young people's needs.

Today, research by Every Disabled Child Matters (EDCM) and The Children's Trust, Tadworth highlights significant concerns about how ready some Health and Wellbeing Boards are to fulfil their responsibilities towards disabled children and young people (1).

Families with disabled children and young people are put under extreme pressure by the demands of coordinating a fragmented system of social care, health and education support. Failing to deliver appropriate services at the right time leads to significant distress and contributes to poor health outcomes and family breakdown. Health and Wellbeing Boards, local forums of key health and social care leaders established by the Health and Social Care Act 2012, will play an important role in tackling these challenges in the new health system by assessing the needs of the local population and promoting joint commissioning and integration between health, social care and wider services.

However, correspondence between EDCM and shadow Health and Wellbeing Boards ahead of the new health system's launch at the beginning of April found that (2):

• A significant number (41%) of shadow Health and Wellbeing Boards who responded did not have a Joint Strategic Needs Assessment that referred to the needs of disabled children and young people (3).

• There was a worrying lack of clarity around how Joint Strategic Needs Assessments would fit in with other local planning processes and strategies, and what the role of children's trust arrangements would be in local authority areas.

• There was little consistency in the data local areas collected on disabled children and young people and to what extent they collected data on their health needs.

EDCM and The Children's Trust, Tadworth have developed a Disabled Children's Charter for Health and Wellbeing Boards (4), to support them to meet their responsibilities towards disabled children and young people. The Charter commitments include collecting accurate data on disabled children and young people, setting strategic outcomes for local partners and strengthening integration. This Charter provides a tool for Health and Wellbeing Boards to deliver the Government's ambitions for the new health system to improve children and young people's health outcomes, as set out by the Department of Health in 'Better health outcomes for children and young people: Our pledge'.

Dalton Leong, Chief Executive of The Children's Trust: "The advent of the new health system is a major opportunity to address some of the most enduring challenges faced by disabled children, young people and their families in accessing the support they need. Our research found some cause for concern, where shadow Health and Wellbeing Boards had not yet taken the necessary steps to provide leadership to the local partners involved in meeting these issues. We hope for a positive reaction to this opportunity."

Christine Lenehan, EDCM Board Member: "Disabled children and young people represent a crucial test for the new health system. As a group that experiences huge health inequalities and frequently requires support from multiple services across numerous agencies, meeting their needs requires exactly the kind of joined-up approach promised by the health reforms. The Government set out its ambitions for improving health outcomes for children and young people in its system-wide pledge. By signing the Disabled Children's Charter for Health and Wellbeing Boards and delivering its commitments, Health and Wellbeing Boards can be confident that they are meeting their responsibilities towards disabled children and young people and the Government's ambitions."

Sarah Thomas - Co Chair of the National Network of Parent Carer Forums: "It is essential that Health and Wellbeing Boards recognise the complexity of the lives of families of young people with disabilities. Too often these vulnerable families are overlooked or not understood by the organisations that plan and commission services. The National Network and local parent carer forums are keen to work with Health and Wellbeing Boards to ensure that the needs of disabled children and their families are recorded, understood and met, and we fully support the EDCM Charter."

Editors Notes

1. Disabled children and young people, including children and young people with special educational needs and health conditions.

2. Read the report of EDCM and The Children's Trust, Tadworth's research here. In November 2012, EDCM and The Children's Trust, Tadworth wrote to the Director of Children's Services in every local authority to ask how their shadow Health Wellbeing Board was preparing to deliver its responsibilities in regard to disabled children and young people. The purpose of this exercise was to highlight the positive steps Health and Wellbeing Boards were taking and share good practice with other Health and Wellbeing Boards, as well as indicate areas of concern requiring urgent attention. This exercise was not intended to provide a statistical survey of the progress of shadow Health and Wellbeing Boards leading up to the new health system coming into force.

3. The Joint Strategic Needs Assessment is the primary planning tool used to analyse the health needs of populations, and inform and guide commissioning of health, well-being and social care services within local authority areas. The JSNA will underpin the health and well-being strategies and commissioning plans.

4. Read the Disabled Children's Charter for Health and Wellbeing Boards.

5. Send a letter to your Health and Wellbeing Board Chair urging them to sign the Charter.

6. Every Disabled Child Matters is the national campaign to get rights and justice for every disabled child. It is run by four leading organisations working with disabled children and their families: Contact a Family, Council for Disabled Children, Mencap and the Special Educational Consortium. Find out more at www.edcm.org.uk

7. The Children's Trust, Tadworth is the leading UK charity for children with acquired brain injury, multiple disabilities and complex health needs. The Trust's services include the UK's largest rehabilitation centre for children and young people with acquired brain injury, nursing care for technology-dependent children, and education for children and young people with profound and multiple learning difficulties and complex health needs. Find out more:http://www.thechildrenstrust.org.uk/