My Lords, I wish to speak about Part 3, which is mainly concerned with the reform of special educational needs and disability.
I commend the Government for recognising that the system with which families have to contend to secure the right services for their children is adversarial and in need of improvement. The many, many charities and organisations—such as Together for Short Lives; CLIC Sargent, a charity that deals with children with cancer; Scope; the National Deaf Children’s Society; charities related to children with autism; and many
others—have highlighted through the evidence that they have gathered that the disjointed system of care presents many challenges for the families of children with life-limiting conditions.
There are nearly 39,000 children and young people with life-limiting and life-threatening conditions. Up to 1,600 children aged up to 15 and 2,000 aged between 16 and 24 are diagnosed with cancer each year. Nine out of 10 of these children feel that their diagnosis and treatment make a difference to their school lives. Many others have other serious and life-threatening conditions. Children who have different needs and require complex, individualised health interventions also need additional social care and educational support. The families of these children routinely deal with more than 30 professionals, from education, social care, health and other services. Communication between agencies is generally inadequate, adding further stress to families and children. While this is stressful for families of children with disabilities and long-term conditions, for families whose children’s lives are likely to be short it is particularly distressing. One parent said:
“It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. They don’t tell you what all the services actually do. By the time I had made it all fit together my child had passed away—that makes me sad that he could have had so much more out of life”.
Evidence shows that for these children the best outcome is achieved when there is an effective partnership between parents and services and care is co-ordinated around the needs of the child. I felt the Government had got it right when they proposed integrated health, education and social care assessment plans, improving joint commissioning between local agencies. Alas, the Bill was changed and I concur with the comments of the noble Baroness, Lady Hughes of Stretford. The Government have withdrawn to a position in the Bill whereby only children who have special educational needs will be able to benefit from these reforms. Why did the Government change their mind?
Many children with complex health conditions, including cancer, cystic fibrosis and many other diseases mentioned by other noble Lords would benefit from a single education, health and care plan—the so-called EHC plan—but would not meet the requirements for a SEN statement. It cannot have been the Government’s intention to exclude these children. It also flies against the recommendation made by the Education Select Committee in the other place and the Government’s stated aim to remove the graduated approach to SEN. Up to a quarter of disabled children do not have a SEN statement. What plans do the Government have to integrate assessment and services for this group of children?
Clause 30 requires a local authority to produce information on education, health and care services “it expects” to be available locally, known as the “local offer”. This has the potential to speed up access to services and to increase confidence in the system. The added provision to assist children transitioning from childhood to adulthood is to be welcomed. However, Clause 30, which deals with this, is not strong enough to ensure that the benefits of the new local offer will be realised, as other noble Lords have commented. First, a local authority will have to set out only the provision
“it expects” to be available in the local offer. That wording is not strong enough to provide redress for parents or young people if those services are not available. Secondly, there is too much scope for variation between local areas in services that will be specified. Clause 30 would be strengthened by a legal duty to provide what is set out in the local offer, which would enable parents and young people to challenge local authorities. I hope the Minister is sympathetic to that, as the feeling is quite strong that such a duty should be in the Bill.
Also required in the Bill is a common framework to inform the development of each local offer. I am concerned, too, that the Bill’s focus on education means that a once-in-a-generation opportunity to join up services for all disabled children and young people, particularly around the transition from children’s to adult services, is being lost. Young people between the ages of 18 and 25 who may move in and out of education or leave education altogether will not have access to a single EHC plan and will lose access to support. This will include many young people who need palliative care who, owing to the complexity of their conditions, do not continue in education. This Bill, in addition to the Care Bill, which we continue to debate in Committee, will bring about two different systems for young disabled people who transit from children’s to adult services in England, depending on their educational status.
The Bill provides an opportunity to ensure that young people with complex conditions, or diseases such as cancer, up to the age of 25 continue to have access to an EHC plan, regardless of their educational circumstances. I hope that the Government feel sympathetic to this and that they take this opportunity to ensure that it happens. I look forward to the Minister’s response.
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