Children and Families Bill

Lord Patel Excerpts

Monday 4th November 2013 Grand Committee

Moved by

[Lord Patel]

128A: Clause 36, page 28, line 33, after “school” insert “, providers of alternative provision,”

[Lord Patel (CB)]

My Lords, it is a pleasure to kick off today’s procedure rather than waiting all day and your turn not coming. It gives me an opportunity to begin and I will try not to be long. Perhaps I may put my amendment in the context of the debate that we have had. First, many times in Committee we have heard that this Bill is all about improving education for all children. I am encouraged by and I thank the noble Lord, Lord Nash, and the Government, for their amendment related to the education of children with cancers and other long-term diseases.

I also thank him for his response to the amendment in the names of my noble friend Lord Kennedy and myself about children with cancers, their education and alternative provision. Putting that into context with this amendment makes this amendment crucial to complete the circle. I say that because my amendment provides a simple insertion to Clause 36. It would ensure that “providers of alternative provision”, including hospital schools and medical pupil referral units, would be able to request an education, health and care—the so-called EHC—needs assessment for pupils who need it. It is necessary because the Bill states that the request for,

“an EHC needs assessment for a child or young person may be made to the authority by the child’s parent, the young person or a person acting on behalf of a school or post-16 institution”.

I believe that what is lacking is that the providers of alternative provision should also be able to request an assessment.

Research carried out by charities such as CLIC Sargent has found that many parents did not think that their child’s educational needs were adequately assessed after their child’s initial diagnosis of their condition, including cancer. That adversely affected the education of the child. Alternative providers are well placed to request and feed into the needs assessment, as they have better knowledge of the child’s needs and have been involved in the child’s education over a period of time. Importantly, the limitations that, for example, the child with cancer still undergoing treatment might have can last several years.

Although some children with cancer go through treatment with minor disruption to their education, some find that they are disadvantaged for years as a result of aggressive and debilitating treatment and have huge gaps in their education. Their needs are very different. Some would be able to return to school with minimal extra provision, while others may require significant additional support. In some cases, that may be during their whole school career to enable them to catch up with their peers and to achieve their potential.

Often, awareness on the part of the school is key, which is not surprising considering that such children and young people are few in number. About 3,500 new cases of child cancers are diagnosed every year and a similar number of other children have other long-term diseases. Because of the variety of conditions, each school will not have the necessary experience. The issue is further exacerbated by the fact the child’s needs will often not be immediately apparent, but learning can still be affected in the longer term as a result of chronic fatigue, attention and concentration difficulties and even psychological and emotional problems. These issues can all directly impact on a child’s ability to learn.

There are, therefore, other benefits in involving hospital school staff and other professionals such as clinical nurse specialists in the process, as they are much more likely to have specialist knowledge about the impact of the child’s cancer and the support required. The amendment has the support of the National Association of Hospital and Home Teaching, a professional association for teachers and staff in the UK who work with children and young people whose medical needs prevent them from attending school.

The Minister has been very considerate in the amendments we debated before, but this amendment is the one missing notch that will help the education of children not just with cancers but with other long-term diseases. It would recognise the important role of alternative providers of education, working in a co-operative way with schools, parents and local authorities. Furthermore, including them in the EHC planning of these children values them as teachers. I hope the noble Lord, Lord Nash, will be sympathetic to the amendment. I am not seeking for this to be in the Bill—although I do not see why not—but I would be content if the guidance could be strengthened. I beg to move.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I wish to speak to Amendments 129, 131, 133, 136, 139, 140, 141 and 142 standing in my name. These amendments focus on the mechanics of the process for determining education, health and care needs, the rights of appeal and the support for families which need to be factored in during the assessment process.

First, Amendment 131 specifies that, when making a decision as to whether special educational provision should be made for a child or young person, the local authority should have,

“regard to the competencies and needs of the child or young person’s parents and immediate family”.

This whole-family approach is an essential feature of the Bill. It should place the child’s or young person’s family at the heart of the assessment process. This is important in informing the provision to be specified in an EHC plan and would provide a much more rounded and personalised programme of support. This is consistent with our approach to previous parts of the Bill which sought to involve families more in the process. I know, from discussions we have had about young carers, that the Minister is sympathetic to this approach.

It is important that family life and home life are considered as part of a support package. Families are key to the well-being of children and young people with special educational needs and disabilities and to ensuring that they have every help to achieve their potential. The draft code of practice is very light on the scope to include families in assessments. The emphasis is on parental involvement in discussions and decisions, which is fine, but we are making a different point: families do not just need to be consulted; their own needs for help and support also need to be assessed. This whole-family approach is a fundamental principle which should thread through the clauses and be spelled out in the Bill. I hope noble Lords will support this amendment.

Amendments 129, 140, 141 and 142 deal with timescales in decision-making. Clause 36 specifies that parents, young people or educational establishments can request an EHC assessment. Our amendments would add a six-week time limit for responding to such requests. We feel that this is a reasonable timeframe, given that such requests would not be made unless there was a view that a child’s education was suffering in some way, so early intervention and action for the sake of the child are obviously important at that point.

We are aware that this requirement is included in the draft code of practice, but we feel that these rights are so fundamental that they should be spelt out clearly in the Bill. We feel that clear timescales would give added reassurance to parents and children alike, and would ensure that local authorities had clear and responsive processes in place to comply with the Act from its commencement, which would make these timescales a reality.

Amendments 133 and 136 deal with the right of appeal. As it stands, Clause 36(5) states that where a decision is taken by a local authority that no special education provision will be made, the local authority must notify the child’s parent or the young person of the reasons for that decision. So far so good, but our amendment would go one step further and ensure that parents are informed of their right to take the decision to appeal as a matter of course. This matter is covered in the code of practice, but we feel that it is better placed as an absolute right in the Bill.

We would go one stage further and argue that all appeal rights should be brought together as one single seamless set of rights spelt out in the Bill. We have separate amendments in a later group that address that point. We believe that a robust appeals process will ultimately be a guarantor of quality and will help to make the EHC system a success. I hope noble Lords will listen carefully to the points that I have made and will feel able to support the amendments.

--- Later in debate ---

[Lord Nash]

My Lords, I am grateful to the noble Baroness for making this point, and we will go away and think about what she has said.

[Lord Patel]

My Lords, I thank the noble Lord for his comments on my amendment. I did not think that the earlier provisions he referred to made it clear that alternative providers of education could initiate an EHC plan, but if his reassurances confirm that, then I am content. I will, however, read exactly what he said and look at the clauses again. I felt the earlier clauses did not clarify that, which is why I tabled the amendment.

Amendment 128A withdrawn.

Children and Families Bill

Lord Patel Excerpts

Wednesday 23rd October 2013 Grand Committee

[Baroness Howarth of Breckland]

My Lords, I will be brief—I am sure that the Minister will be grateful for that—but I want to say two things at the beginning. First, the Minister needs to know that many organisations think that a great deal in the Bill is extremely welcome. The tone of the debate seems critical. I think that we have the number of amendments that we have simply because people care about the issue and have discussed it at length. I have met several organisations which have said how valuable a great deal of what is in the Bill is taking forward work with disabled children. I thought that we needed to have that on record while we are all complaining bitterly about the things that the Government have not done.

I shall speak to Amendment 220. Most of the points have been made, and I will not make a long, heartfelt tirade about the group that I care about. I just say that I work closely with children with congenital heart disease, children born with half a heart, many of them with hypoplastic left heart syndrome. They usually look like perfectly ordinary children but they are in serious difficulty when they get to school. I am therefore immensely grateful to see the Minister’s amendment but I ask that we see the regulations, because the devil will be in the detail as to whether it really meets the requirements. If we can see the regulations early, it might relieve the pain on Report, when people will otherwise want to speak at length again.

My other question is: once we have the regulation and the detail, how will families be able to complain without taking themselves through massive tribunal cases, as we know has happened? It might be worth the Government looking at how parents raise issues under the regulations when they feel that their needs have not been met, because that would save everybody pain. It is no use saying to ourselves that Ofsted will deal with that, because we know that it visits only every four years. Some children have been right through school and never seen an Ofsted inspection. If we could have some clarity on that, it would certainly speed things up.

[Lord Patel (CB)]

My Lords, I speak in support of Amendment 223, to which my name is attached. I will be brief, because most of what I would have said has already been said well by the noble Lord, Lord Kennedy of Southwark.

I particularly support the emphasis that he put on the need for teachers to have the right training to deal with children with medical conditions. Without that training, it is likely that any guidance issued will be completely defunct. The NHS, local authorities and schools need to work co-operatively to ensure that training is provided and accessible to teachers.

I welcome the government amendment most sincerely. I am glad that the Minister has tabled it at this stage. My only problem is that, without seeing the draft guidance, we have no way to comment on whether its breadth and depth will be adequate to meet the needs of children with medical conditions. I therefore hope that the Minister can make a commitment to bring forward the draft guidance before Report, so that we can improve it—not criticise it, but help to improve it.

I also want to ensure the inclusion of medical conditions not already mentioned—the list is exhaustive— such as diabetes, epilepsy, asthma and allergies, but also cancers. It is often thought that children with cancers have short lives. Some, unfortunately, do, but most childhood cancers are now long-term conditions and should be treated more as chronic diseases, not short-term ones. I hope that the Minister will include dealing with cancers in the guidance.

The guidance must recognise both the social and emotional needs of young people with long-term medical conditions, and the fact that a health condition can impact on a child or young person’s ability to learn. Another important point made by the noble Lord, Lord Kennedy of Southwark, was the need to involve the parents and children to ensure that the school understands their condition and its emergency needs. A child having a hypoglycaemic attack requires immediate treatment. A child having an allergic attack requires immediate treatment. A child with a migraine needs to be treated with compassion, because they may lose their vision and hearing. Putting them in a corner or a quiet room does not solve the problem. Those are some of the things that children with a medical condition suffer on a daily basis in schools. If we cannot get things right for children in the Bill, we fail them.

[Baroness Brinton (LD)]

My Lords, with the permission of the Grand Committee, I would like to speak sitting down. I have added my name to Amendments 67 and 68, and I will not repeat the points that my noble friend Lord Storey has already covered, although I completely agree with them.

I, too, want to focus on children with medical conditions. We have had a lot of information, but I have met three or four children with differing conditions. The problem is when schools do not recognise a medical condition. A young man aged 18 with ME had a statement, but it was for his behaviour, not for his medical condition. Even after the consultant wrote to the school, the school refused to believe that the condition existed. A girl with a congenital heart condition was taking an exam. The invigilator had not been informed about the technical equipment she had to wear, and she was pulled out of the exam. Cancer has already been mentioned. There have certainly been some serious educational support issues. I met one young lady who, in the year she had off from formal schooling, had one supportive teacher who kept in touch academically and socially. None of the others did. Home tuition via the local authority was extremely patchy and had not linked up with the school, and nor had the hospital school. As a result, the year was, in her phrase, “entirely haphazard”.

Children and Families Bill

Lord Patel Excerpts

Tuesday 2nd July 2013 Lords Chamber

[Lord Patel]

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.