Children and Families Bill

Memorandum submitted by the Down's Syndrome Association (CF 42)

Children and Families Bill

Part 3 – Special Educational Needs

About the Down’s Syndrome Association

1. The Down’s Syndrome Association (DSA) provides information and advice on all aspects of Down’s syndrome to people with Down’s syndrome (DS), their families and professionals. It is a Registered Charity established in 1970 and has a membership of over 20,000.

Down’s syndrome is the most common form of learning disability caused by a chromosome abnormality. About 1 in every 1000 babies born each year has the condition. All of these children will have some degree of learning difficulty ranging from mild to severe. Each will vary as widely in their development and progress as other children. Generally speaking, children with DS develop more slowly than their peers and the developmental gap between DS children and their peers widens with age. Research has identified characteristic strengths and weaknesses. Being aware of how these factors facilitate and inhibit learning will inform the provision of appropriate support. Some factors have physical implications; others have cognitive ones. Many have both.


2. As an organisation supporting people with Down’s syndrome and their families across the lifespan, the DSA welcomes the creation of a single system for children and young people up to age 25. We also welcome the fact that the legislation will apply directly to Academies and Free schools.

Clause 25 Promoting integration and Clause 26 Joint Commissioning arrangements

3. The DSA does not believe the provisions in these clauses will ensure the ‘joined up’ system between education, health and social care promised by the 2011 Green Paper ‘Support and aspiration’. The Bill still gives us an education driven system as evidenced by clause 26(3) Joint commissioning arrangements must include arrangements for considering and agreeing (a) the education, health and care provision reasonably required by the special educational needs of the child.

4. Whereas all children with Down's syndrome will have special educational needs as defined by the Bill, a considerable number will also have significant health issues and a requirement for social care provision to support them and their families. Particularly in the early years, health provision may be of primary importance to children with Down’s syndrome independent of any educational need. We suggest amending the above clause to read reasonably required by the child omitting the words special educational needs.

Clause 27 Duty to keep education and care provision under review

5. The DSA considers this clause will not ensure sufficient and appropriate education and social care provision is available to meet future needs.

We want to see this clause expanded to contain a specific advance planning duty for local authorities to develop provision for future SEN requirements. This should include a requirement to gather evidence on projected population changes and the incidence of particular types of SEN. May authorities currently do this but the approach is not consistent across the country.

Clause 29 Co-operating generally: governing body functions

6. This clause requires governing bodies and proprietors of schools to co-operate with the local authority. The list of schools in subsection (2) does not include maintained special schools or special Academies. This omission should be rectified as special schools must be involved in local planning for children with SEN and disabilities.

Clause 30 The local offer

7. The DSA considers the provisions for the local offer need to be more specific. In their present form they will not give the necessary guarantees to parents or young people. For example subsection (1) states that a local authority must publish information about the provision […] it expects to be available. ‘Expects’ does not provide any guarantee of entitlement for families and should be changed to ‘will be available’. The local offer must contain more than a statement of good intent. It is essential for parents to understand what their child is entitled to and the type and standard of service that will be available. Clear and defined requirements on the local offer will also identify gaps in services thereby assisting local authorities with the clause 27 duty to keep education and care provision under review.

8. Subsection (6) will require local authorities to publish comments on the local offer by parents and young people as well as the local authority’s response. We do not believe that this provides sufficient accountability. We would like to see a body with responsibility for ‘policing’ the local offer and dealing with complaints. This role could be undertaken by Ofsted and / or the Local Government Ombudsman.

9. Subsections (8) states that regulations may make provision and (9) that regulations may require. Parents already report a wide difference in provision from one local authority to another, the so-called ‘postcode lottery’. In order to avoid this situation the local offer must contain clear national minimum standards. May should be changed to must in subsections (8) and (9)

Clause 32 Advice and information for parents and young people

10. We welcome the inclusion in the Bill of Advice and information for parents and young people. This should be extended to include the requirement for an independent advocacy service for young people. All young people with Down’s syndrome will have at least some degree of learning disability and will need support in making decisions. Young people’s experience will be limited; they will require someone to support them in finding out about available options and to coordinate support.

Clause 34 Children and young people with special educational needs but no EHC plan – power of special Academies to admit

11. The DSA does not agree with the provision in subsection (9) that special Academies and Free Schools should be able to admit children without an EHCP. This runs counter to the intention of the Bill to put Academies and Free Schools on the same legal footing as maintained schools with regard to SEN legislation. We are concerned that children may be placed in special academies without the protection of a plan or the concomitant reviews.

Clause 35 Children with SEN in maintained nurseries and mainstream schools

12. This clause places a duty upon maintained nurseries and maintained schools to see that a child with SEN engages in the activities of the school along with children who do not have SEN. This should be extended both to providers of relevant early years education, i.e. publicly funded under the early years entitlement, and also to institutions in the further education sector.

13. The vast majority of children with Down's Syndrome are in mainstream early years provision, so we believe that the inclusion duty on early years providers should be the same as that on schools. At Key Stage 3 and 4 there is a growing number of young people with Down’s syndrome included in mainstream secondary school. On progression to college they may find themselves on discrete courses for students with LDD without the opportunity to be included in a wider group as they were at school.

Clause 36 Assessment of education, health and care needs

14. The current system of assessments under the 1996 Education Act has strict time limits attached. The Children and Families Bill does not contain sufficient safeguards to ensure that there will be legally binding national time limits. The Bill should be amended to replicate provision in the 1996 Act. If time limits are to be contained in regulations, an additional subsection should be included to state that regulations must make provision for prescribed time limits.

15. We do not feel that there is sufficient clarity about who will be eligible for an assessment or the form the assessment will take and there does not yet appear to be a clear view emerging from Pathfinders about this. We would like to see greater clarity about how health and social care will be involved i n the assessment. A minimum level of involvement of health and social care should be prescribed in regulations.

16. The DSA is concerned that the assessment remains an education driven process. Under subsection (3) the local authority must determine whether it may be necessary for special educational provision to be made for a child or young person in accordance with an EHC Plan. Children with Down's Syndrome are identified at birth or before so will initially come to the attention of health services. A proportion of them will have complex health needs particularly in the early years. Provision should be made for an assessment to be triggered at a point where health is the only or main presenting need.

Clause 37 Education, health and care plans

17. As for assessments, it is still difficult to get a feel for what a plan might look like. The recent SEND Pathfinder Programme Report [1] merely describes the processes used by some of the pathfinders and does not include any specific details about EHCPs.

18. We would like to see a requirement for the format for the EHC Plan to be included in regulations, as is currently the situation for statements. A standardised plan is essential to ensure consistency across the country and portability of assessments and plans between local authorities.

19. Subsection (2)(b) states that the plan must include the outcomes sought for him or her. These outcomes require further definition, as it is not clear whether they are educational outcomes only or relate to wider health and wellbeing. Clause 45 (3) on ceasing plans only refers to LAs having regard to whether the educational outcomes on the plan have been achieved. This would allow a plan to be discontinued when a child or young person still has significant health or social care needs which could continue to impact upon their educational development.

Clause 38 Preparation of EHC plan: draft plan

20. We welcome the addition of non-maintained and approved independent special schools and special post 16 institutions in subsection (3). This will extend parental choice.

21. This clause does not contain any time limits for considering representations or any right for the parent to request a meeting with the local authority. The Bill should be amended to reflect the current entitlements in sch 27 of the 1996 Act.

Clause 42 Duty to secure special educational provision

22. It is of concern that in the Bill as published the duty extends only to educational provision.

The DSA welcomes the recent announcement by the minister to impose a statutory duty on CCGs to provide health services specified in EHC Plans for children and young people with SEN.

23. However, we would welcome clarification over the effect of any new clause on clause 21(5) (health and social care as educational provision). The current proposals for Tribunal appeals cover educational provision only. Therefore despite the new duty on CCGs clause 21 (5) should remain in order to give parents and young people the right of appeal over educationally necessary health and social care provision.

Clause 61ff Functions of governing bodies

24. We note that the majority of the current requirements of s317 of the 1996 Act are replicated. There is however no equivalent to EA1996 s317 (1)(b) and (c)

(1)The governing body […] shall […]

(b)secure that, where the responsible person has been informed by the local education authority that a registered pupil has special educational needs, those needs are made known to all who are likely to teach him, and

(c) secure that the teachers in the school are aware of the importance of identifying, and providing for, those registered pupils who have special educational needs.

25. The DSA believes that although this may been seen as standard good practice in schools, it is important that it be restated in the legislation. We are aware through parents ringing our helpline that inclusive practice in mainstream schools and the extent to which individual teachers take responsibility for children with SEN varies enormously. This is borne out by a recent study carried out by the Institute of Education [2] .

Clause 72 Interpretation of part 3 - Definition of young person

26. For the purposes of part 3 of the Bill, a young person is defined as:

a person over compulsory school age but under 25

The provisions in the Bill apply to parents of children and to young people. This is a change from part 4 of the 1996 Act which applied to parents of children under 19.

27. While we welcome giving a voice to young people, we are concerned about the wholesale transfer of rights from parents to young people at age 16. Young people aged 16 with Down’s syndrome will have limited life experience and will need considerable extra support to explore different options. We would like to see a statutory requirement for an independent advocate for young people aged 16-15.

28. We also suggest that for the 16 to 18 age group, rights should apply in parallel both to parents and young people. This situation already exists in the area of school admissions and appeals.

March 2013

[1] SEND Pathfinder Programme Report – DfE and DH March 2013

[2] The Making a Statement project final report – Rob Webster and Peter Blatchford February 2013

Prepared 20th March 2013