Every Child Matters: taking disability seriously

An important new campaign, Every Disabled Child Matters, was launched by four organisations – Contact a Family, Council for Disabled Children, Mencap and the Special Educational Consortium – at a well attended fringe meeting during the Labour party’s autumn conference. The need for such a campaign is long overdue, reflecting failings in the provision of services for disabled children identified in a report published by the Audit Commission in 2003:

We found a lottery of provision. The services that disabled children, young people and their families are offered depend largely on where they live, and on how hard parents are able to push. Whether or not families have access to essential provision, such as short breaks, childcare and after-school clubs is often decided by what has been provided in the past, and on the particular diagnoses families present with. Practitioners struggle to turn innovative projects into long-term secure provision.

Every Child Matters in practice

In a sense, the changes in practice and provision linked to the implementation of the national Every Child Matters (ECM) policy should be addressing these concerns, and many others highlighted by the Audit Commission. However, the main thrust of ECM to date appears to have focused on improving ‘universal’ rather then ‘targeted’ children’s services, although the inspection of these services does take into account the need to improve outcomes for children and young people with learning difficulties and/or disabilities. The difficulty here, is that inspection alone, may identify all too familiar problems, but does not necessarily bring about improvement.

Similarly, ECM has highlighted the importance of developing new, and more collaborative ways of working, and ways of doing this, for example in relation to transforming the role of the SENCO, have been reflected upon in detail (Cheminais, 2005a, 2005b). These imaginative and positive approaches to new patterns of collaborative practice need, though, to be reflected upon in the context of an ECM policy that has, to date, failed to recognise shortfalls in provision (targeted services) and the need to increase levels of funding. The effect of this failure has been twofold. First, as the Every Disabled Child Matters campaign highlights:

There is significant research and policy evidence to show that disabled children and their families experience multiple disadvantages compared to other children and their families. For example, disabled children are 13 times more likely to be excluded from school than other children.

In other words, despite the implementation of ECM the phenomenon of multiple disadvantage continues to impact on disabled children, young people and their families. Second, many professionals, including SENCOs and colleagues they work with across a range of services, although they are committed to the aims of ECM, work under great constraints making the policy aspirational rather than real.

What next?

The Every Disabled Child Matters campaign has outlined the following objectives for its work over the next three years. It wants:

• families with disabled children to have ordinary lives
• disabled children to matter as much as all other children
• disabled children and their families to be fully included in society
• all disabled children and their families to get the right services and support – no matter where they live
• poverty amongst disabled children and their families to be cut by 50% by 2010 and eliminated by 2020
• an education system that meets the needs of each child and enables them to reach their full potential
• disabled children and their families to shape the way that services are planned, commissioned and delivered.

To meet these objectives Every Disabled Child Matters is seeking action at government level to ensure that:

• every family who wants one to be entitled to a key worker on diagnosis
• every extended school and children’s centre to deliver a full range of services to disabled children
• a specific, enforceable duty on local authorities to assess and provide for the needs of disabled children and their families, with a minimum entitlement to family support and short break services
• all schools to have effective disability equality schemes which ensure full access to every aspect of the life of the school for all disabled pupils
• all education and childcare professionals to receive training to ensure that they have the skills and competencies to meet the needs of disabled children
• all primary care trusts, working with local children’s services departments, to be required to produce a comprehensive strategy to meet the health needs of disabled children and their families
• a multi-agency adolescent service in every local area for disabled young people aged 14-25, to ensure transition to adult services is planned and delivered
• regulations and guidance to ensure that no disabled child is excluded from school because their education or health needs are not met
• parents and carers to be entitled to informed and appropriate support for their parenting or caring roles
• disabled children to be prioritised and targeted to ensure that sufficient resources are distributed fairly and transparently.

Finally, the campaign identifies what it thinks has to be done if its objectives are to be met and if its recommended actions are to be fulfilled. It argues that we need:

• a pan-governmental delivery strategy for disabled children, building on existing policy and owned by a lead minister
• national public service agreements and local area agreements which prioritise disabled children with meaningful performance indicators and national minimum standards
• effective inspection frameworks for both universal and specialist services which prioritise disabled children and create improvement cycles that lead to a step-change in services
• all domestic government policy to be subject to an impact assessment for disabled children and their families
• all public agencies to deliver on their disability equality duties towards disabled children
• the government’s Carers Strategy to prioritise families with disabled children
• disabled children to be targeted in the planning and priority guidance to primary care trusts, with health equity audits addressing the needs of disabled children and their families
• specific measurement of the reduction of poverty amongst disabled children and their families within the government’s child poverty strategy
• all local agencies to hold comprehensive multi-agency data on disabled children in their area to inform planning
• all local agencies to monitor the delivery of services for disabled children and families, in order to prove that services are being delivered equitably
• all agencies to fully involve disabled children and their families in the planning, commissioning and delivery of services.

Next steps

Speaking at the launch of Every Disabled Child Matters, Ed Balls (economic secretary at the Treasury and close ally of Gordon Brown) gave his support to the campaign’s objectives and highlighted three key issues for families with disabled children: a shortage of respite and short break services, a lack of service coordination and the need for early intervention. He also stated that transition to adulthood for disabled children was ‘a hugely neglected part of the policy debate’. A first step in moving the campaign forward will be the bringing forward of a private member’s bill by Every Disabled Child Matters to create a minimum entitlement to short breaks for families with disabled children. This will be based on the bill introduced by Ed Balls in the last parliamentary session.

The campaign appears to well planned, and has avoided the ‘trap’ of advocating only the provision of mainstream – as opposed to specialist – services for disabled children and their families. Instead, it is arguing for disabled children and their families to be fully included in society, and in shaping the way that services are planned, commissioned and delivered. It is also arguing for an education system that meets the needs of each child and enables them to reach their full potential.

Notes

1. Audit Commission (2003) Services for Disabled Children: A Review of Services for Disabled Children is available at www.audit-commission.gov.uk/disabledchildren/
2. Ofsted (2005) Inspection of Children’s Services: Key Judgements and Illustrative Evidence. This publication does outline ways in which Ofsted inspects and makes judgements in relation to the quality of provision for children and young people with learning difficulties and/or disabilities. For example, in relation to the ECM outcome Enjoy and Achieve, inspectors are required to make judgements about how children and young people with learning difficulties are helped to enjoy and achieve.

References

Cheminais, R (2005a) ‘Every Child Matters: A New Role for SENCOs in Transforming Learning Communities’, SENCO Update, 67 (July-August), 6-7.
Cheminais, R (2005b) Every Child Matters – A New Role for SENCOs: A Practical Guide. London David Fulton Publishers.