I begin by supporting the comments of my hon. Friend the Member for Stockport (Ann Coffey). In Rotherham, a prosecution for child sexual exploitation collapsed because the young person found that the horror and trauma of going to court outweighed their desire for justice to be served. I am deeply sympathetic to that young person’s choice, but I urge the Minister to use the Bill to make reforms that prevent other children from having to go through similar horrors.
I broadly welcome the Bill. However, I will focus on how it will impact on life-limited children and children with cancer because I am concerned that they might be overlooked in such a large Bill.
From my experience of working with such children, the care system is often disjointed and baffling. Families routinely deal with more than 30 professionals from education, social care, health and other services. It was standard for families to tell me how frustrated they were that they had to say the same thing over and again to different professionals because the information was not shared between departments, let alone between other agencies. Communication between agencies is generally inadequate, leaving families burdened with the stress of having to navigate their way through an unco-ordinated system. All that happens at a time when many families are overwhelmed by their child’s situation. Unfortunately, that experience is common among families of all disabled children.
If a child’s life is likely to be shortened, the time that is wasted negotiating through the system can be particularly distressing. The Bill must prevent that. As one constituent said:
“Unless you shout and fight you don’t get anything. And, to be honest, I’d rather be spending that time with my child instead of battling the system that should be helping us.”
All the evidence suggests that the best outcomes for children with life-limiting conditions are achieved when there is an effective partnership between parents and the services. As many Members have said today, it is imperative that care is co-ordinated around the needs of the child.
The Bill includes a series of clauses that aim to reform the provision for special educational needs and disability in England. The original SEND proposals were included in the 2011 Green Paper, which set out a vision of improved outcomes for children and young people who are disabled or have SEN. The aim was to reduce the
“adversarial nature of the system for families”.
The Green Paper offered an opportunity to join up assessments and services for all disabled children. However, the draft SEND clauses that followed focused too heavily on education-related services and did not provide an adequate framework to draw health and social care services into the system of support for children with SEN. The Education Committee recommended that the
Government broaden the scope of the clauses to reflect the aspirations of the Green Paper. Ministers have not taken its advice. As a result, it is unlikely that the Bill will bring about the integrated assessments and care that the Government have promised. Unless that is addressed, the Bill will simply replicate and reinforce the fragmentation in the current system.
Research has estimated that about 25% of disabled children do not have SEN. Similarly, there are children who have specific health conditions such as cancer who would benefit significantly from a single plan and jointly commissioned services. However, those children would not meet the requirements for an SEN statement. At a time when local authority budgets are under increasing pressure, I seek assurance from the Government that they recognise the impact of local cuts on SEND services.
Local authorities will need considerable support and resources to ensure that the reforms can make a practical difference at a local level. To ensure that the Bill realises the aims of the Government’s original Green Paper, its focus should be widened to include all disabled children, including those without a statement of SEN. It should make clear what disabled children can expect from local services, through a duty to provide and a national framework for local offers. The entitlement to education, health and care plans should extend to all disabled 18 to 25 year olds, including those no longer in education. The duties on the health service to contribute to integrated assessment and delivery need to be clearer and more explicit, and the Bill’s focus should be widened to include all disabled children.
Despite the Education Committee’s recommendation, the Government have chosen not to include disabled children without an SEN statement in the scope of the Bill. That means that disabled children who do not require support in school, or who are not in education or training, and their families, will not benefit from more integrated services despite the significant time and effort that many have to commit to securing the care and support that they need. I urge the Government to adopt the measures that I have suggested, as they would have a considerable positive impact on a vast number of families.
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