Children and Families Bill

Memorandum submitted by Mencap (CF 34)

Children and Families Bill: Part 3 – Children and young people in England with special educational needs

About Mencap

1. Mencap supports the 1.5 million people with a learning disability in the UK and their families and carers. Mencap fights to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want. See www.mencap.org.uk for more information.

2. We are also one of the largest providers of services, information and advice for people with a learning disability across England, Northern Ireland and Wales. These include the Mencap National Colleges (on three campuses in Somerset, Northumberland and North Wales) and Segal House Nursery in Northern Ireland.

3. Mencap is a member of both the Special Educational Consortium (SEC) and Every Disabled Child Matters (EDCM) and supports their joint submission to the Education Select Committee.

About learning disability

4. A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness. The term learning difficulty is often incorrectly used interchangeably with learning disability.

Executive summary

5. Mencap is grateful for the opportunity to feed into the development of the Children and Families Bill.

6. Mencap is supportive of many of the principles of the Bill, particularly the focus on holistic 0-25 support for those with an Education, Health and Care Plan (EHCP) and proposals to provide an outline of local SEN services – including provision to help prepare children and young people for adulthood – for all children with SEN as part of the local offer.

7. Mencap is also pleased to learn of the government’s intention to place a duty on Clinical Commissioning Groups (CCGs) to secure services in EHCPs for children and young adults. We look forward to the committee analysing the clause when published to ensure that this proposal is as robust as possible.

8. However, Mencap does have a number concerns about how these provisions will operate in practice and how it can be ensured that those services which are planned for are actually delivered by all agencies. We believe that EHCPs can only succeed if they help children and young people to develop in all aspects of their lives and until the age of 25.

9. We also call for clarification about how these proposals tie in with the measures set out in the Draft Care and Support Bill, currently being examined by a Joint Committee, to ease the transition between children’s and adult social care provision.

10. Mencap is working in coalition with the Special Educational Consortium and Every Disabled Child Matters and endorses the views they have advanced. As such, Mencap will be supporting the key asks of both consortia, as well as raising a number of additional points:

· Mencap urges the government to include, within the scope of the bill, disabled children who do not have additional educational needs but who, nevertheless, have health and care needs which might affect their development.

· There is currently no duty to provide what is set out in the local offer. There should be a legal duty on local authorities to deliver what is set out. Mencap believes that local offers should also be subject to some form of national framework in terms of their development, scope and content.

· We believe that the EHCP should be accessed via other routes than just education.

· We urge the Government to commit to supporting young people on an EHCP up to 25, in whatever setting and whether or not they are in education or training. This should include employment support schemes – in addition to apprenticeships – and eligibility for EHCPs under these schemes should be set out in a transparent way.

· Outcomes in the EHCP should be educational, health and care-related and should be based on the notion of ‘wellbeing’ as set out in the draft Care and Support Bill.

11. The main body of this response provides an overview of the key points, which Mencap would like to draw to the Committee’s attention. However, in addition, Mencap has provided a detailed overview of each clause of Part 3 of the Bill. This is included as an appendix and provides a more detailed analysis of the proposals, as well as drawing out a number of additional points.

Key points

Children and Families Bill – SEN reform

12. Mencap welcomes the ambitions of the Bill to provide a more integrated and holistic approach to meeting the needs of children and young people. However, in some areas we believe that the provisions do not go far enough. This submission sets out our views on how the provisions could be improved in order to better realise the Government’s ambitions for disabled children and young people and those with special educational needs (SEN).

Involving children and young people with SEN (clause 19)

13. Mencap welcomes the inclusion of clause 19 as it rightly seeks to place children, young people and their families at the heart of the system. However, Mencap does not believe that this clause goes far enough to ensure that full participation is ensured for people with a learning disability. While a local authority must have "regard to" the importance of someone participating in decisions, unless those efforts to involve someone are done in a way that is accessible and appropriate for their age and development, the good intentions behind the clause may be undermined (please see appendix 1, paragraphs 1-5 for more details).

Mencap calls on the government to explicitly lay out the need for information and engagement to be carried out in an accessible way, such as producing documents in easy read. There should also be an acknowledgement of the need for advocacy to support some children and young people to participate fully and meaningfully.

Definitions and scope (Clause 20)

14. Mencap supports the view of SEC and EDCM that "these clauses only require services to put in place joint arrangements for children with special educational needs. This means disabled children who do not have SEN will not be included in the joint planning and commissioning. We believe this is a major and unnecessary omission".

Joint commissioning arrangements (Clause 26)

15. Clause 26 requires local authorities and clinical commissioning groups (CCGS) to make arrangements for joint commissioning. This includes arrangements for considering and agreeing reasonable provision to meet the needs of all children with SEN in the area, and specifically for children with education, health and care plans. Local authorities and CCGs have to have regard to these agreements, and to the joint health and wellbeing strategy, when undertaking their functions. Schools, Academies, colleges and a range of other education providers, are required to co-operate with the local authority in these and other functions set out in the provisions.

Mencap welcome s the joint commissioning requirements on local authorities and clinical commissioning groups as we believe effective health provision can be as important to someone’s educational attainment as those more direct educational support arrangements (see appendix 1, paragraph 9).

16. Mencap is concerned about the lack of a duty to ensure that these commissioning arrangements are actually provided and secured in the agreed way. Mencap is concerned that this could undermine the intentions of the proposal (please see appendix 1, paragraph 16).

Mencap calls for the Bill to place more robust duty on CCGs to ensure that the agreed commissioning arrangements are secured and delivered.

Duties on health services

17. Mencap welcomes the government’s recent announcement that CCGs will be under a duty to secure services in education, health and care plans for children and young adults. This is essential to ensuring that an EHCP is as holistic as possible and that all of someone’s assessed needs are met. It also has the potential to provide a basis for redress if these needs are not being provided for.

18. However, Mencap is unsure that this provision will cover all of a child or young person’s health-service-provided support as set out in an EHCP. CCG commissioning arrangements are more likely to focus more on therapies than the integral clinical needs that some children and young people with SEN may have. These specialist services are commissioned by the NHS Commissioning Board under provisions in the Health and Social Care Act 2012 which stipulate that specialist services require the commissioning oversight of the national board rather than of local CCGs. Mencap therefore argues that a similar duty to that which has been imposed on CCGs is extended to apply top the NHS Commissioning Board to ensure all health needs listed in an EHCP are delivered (see appendix 1, paragraph 34).

Mencap welcomes the principle behind the duty on health services in an EHCP and looks forward to publication of the Government’s amendment so that it may be analysed. However, Mencap calls for a similar duty to be placed on the NHS Commissioning Board – due to its remit to commission specialist services – in order to ensure more specialist support in an EHCP is similarly able to be met.

The local offer (Clause 30)

19. Clause 30 requires local authorities to produce information on the education, health and care services it ‘expects’ to be available locally, the ‘local offer’. This includes information on provision available outside its area. The details of what the local offer should include and who should be consulted will be set out in regulations.

20. Mencap welcomes the principle of a local offer. Respondents to a Mencap survey [1] said it could provide much greater clarity, for parents, children and young people about what is available locally so that they can ensure their support needs are available in their area [2] (please see appendix 1, paragraph 22). We particularly welcome the amendment to the draft Bill to include provision to assist children and young people to prepare for adulthood and independent living within the ‘local offer’.

21. Children and young people who do not qualify for an education, health and care plan will be reliant on the local offer, so there needs to be a legal duty to provide what is set out in the local offer. Without this, there is no accountability and no route for challenge by parents and young people if the local offer is not delivered (please see appendix 1, paragraph 23).

Mencap welcome s t he principle of a local offer. However, t here needs to be an underpinning duty to provide what is set out in the offer.

22. Mencap is concerned that the regional variations in local offer quality will have a negative impact on the equity of SEN provision, something which should not be determined by something as arbitrary as area of residence (please see appendix 1, paragraph 21).

To address the postcode lottery of support, Mencap believes some form of national framework should inform the development of the local offer. This should be set out on the face of the Bill in order to offer a clear and long-lasting impression of what a local offer should contain.

Information and advice (Clause 32)

23. Clause 32 requires local authorities to ensure there is information and advice available locally for parents and for young people. Parent partnership services provide information and advice for parents.

24. Mencap welcomes the extension of the information duty to include young people with SEN. We believe this is essential to helping young people to take control over their lives and increase their independence. We also call for this information duty to include children as well in order to prepare them for future decision they might make with regard to their provision. Mencap calls on provisions in the Bill to ensure that this information is in an accessible format (please see appendix 1, paragraphs 28-29).

Mencap welcomes the extension of the information duty to include young people and calls for it to be further extended to include children . Meaningful participation should be promoted through provision of accessible information and advocacy .

Education, health and care needs assessment and EHCPs (Clauses 36-49)

25. Statements of SEN will be replaced by education, health and care plans (EHCPs). However, the majority of the provisions in relation to EHCPs remain the same as for statements. The threshold for an EHCP is the same as for a statement – effectively that a school is unable to meet a child or young person’s special educational needs. The plan ceases when a young person is no longer in education or training.

26. Mencap welcomes the concept of a multi-agency plan covering children and young people from birth to 25. We believe it is the right approach to see a child’s SEN support in a holistic way. This idea was supported with caution by many parents who completed Mencap’s survey [3] who stated that it "would need regular reviews depending on the changes in their condition and certain transition times e.g. between key stages, primary to secondary and into college or work" (please see appendix 1, paragraph 31 for a more detailed response to this point).

27. Mencap also acknowledges changes from the draft clauses that align EHCP rights with current statementing rights. Specifically, this is that an EHCP should "specify" rather than "set out" a child or young person’s provision, and that parents, young people and other people acting on behalf of a school or post-16 institution are able to request an EHC needs assessment as opposed to this identification lying solely with the local authority.

28. However, Mencap is concerned that the eligibility for an EHCP is only via an educational trigger. This means that children and young people with primary health and care needs might not be identified as having SEN until they reach an educational setting. This seems opposed to the government’s aspirations to achieve early intervention (please see appendix 1, paragraphs 13-14).

Mencap welcome s the concept of a single assessment and a multiagency plan covering children and young people from birth to 25. Children and young people with health and care needs should be able to access an assessment and a plan where necessary.

29. Mencap welcomes that EHCPs extend current rights associated with a statement into further education and training for the first time.

30. Mencap also supports proposals in Clause 45 to maintain a plan for young people of compulsory participation age who become NEET. However, local authorities can review whether to maintain a plan for someone aged 19-25 if they drop out of education and training. Mencap is disappointed that the plans have a narrow focus in terms of its potential function of aiding someone’s development. We believe development goes beyond education and training. We therefore urge the Government to go further and commit to supporting young people up to the age of 25, in any setting and whether or not they are in education or training. Specifically, we call for the fact that children and young people undertaking supported employment programmes – such as supported internships, and the Department for Work and Pensions’ Work Choice and Work Programme schemes – should be able to maintain an EHCP (please see appendix 1, paragraphs 38-39).

Mencap welcomes the extension of the statutory entitlements into further education and training. We believe these rights should go further to support all EHCP recipients until they are 25 in any setting, including supported employment.

31. Mencap seeks clarification about how these provisions complement the adult social care reforms as they are set out in the draft Care and Support Bill. In particular we are unclear as to how an EHCP might integrate with a Care and Support Plan (please see appendix 1, paragraphs 61-68).

32. Mencap believes the references to outcomes in an EHCP in Clause 37 provide an opportunity to align these two pieces of legislation. The outcomes sought in the draft Care and Support provisions are based on someone’s wellbeing across physical, mental and emotional measures as well as control over day-to-day lives, social and economic wellbeing and other criteria. If outcomes could be aligned across education and social care, this could encourage better integration. Equally, if outcomes are only measured on an educational basis, Mencap believes that this does not give enough focus to a child progressing across all aspects of their life (please see appendix 1, paragraph 42).

Mencap believes that outcomes should be measured in terms of someone’s overall wellbeing to align education and social care better and to encourage progress across someone’s whole life.

Mediation

33. Mencap welcomes the changes from the draft clauses to make mediation a voluntary undertaking before going to the SEN tribunal.

SEN Code of Practice

34. Mencap also welcomes the fact that the new 0-25 SEN Code of Practice will be laid before Parliament. We do, however, believe that it should be subject to affirmative resolution to ensure the best possible opportunity for this important document to be properly scrutinised.

Mencap believes the draft Code of Practice should be subject to the affirmative resolution.

March 2013

Appendix 1: Clause by clause analysis [1]

Involving children and young people with SEN (Clause 19)

1. Mencap welcomes the inclusion of this clause, particularly the intention that children, young people and families are central to the SEN system. The Lamb Review [4] highlighted the adversarial nature of the current system for families and Mencap believes this is a step in the right direction in seeking to overcome these identified failures.

2. A key element of Mencap’s previous submission to the Education Select Committee was the need to fully empower children in the decisions being made about their lives. Mencap understands the government’s logic of applying the cut off age of 16, but believes it is important to establish a firm basis for children to be able to participate in decisions about their life before their 16th birthday to ensure that they are properly equipped to make decisions on their own when they pass that threshold. Mencap believes this clause has the potential to ensure this is the case, by promoting the value of involving children from an early stage of their development.

3. However, Mencap would like to see this principle go further. Currently, a local authority must only "have regard" to involving a child, young person or a parent. This is particularly the case with 19 (b) in which consideration only needs to be made about the "importance of the child and his or her parent, or the young person, participating as fully as possible" in decisions about them. Mencap argues that it is one thing to appreciate that participation is important and is another thing to actually practice it. Mencap acknowledges that many local authorities will pursue this as a matter of routine, but we believe that – if involvement is the golden thread running through these reforms – this can only be realised when there is an implicit requirement for this to happen. Mencap therefore calls for the Bill to set out that local authorities are under a duty to ensure meaningful participation of children, young people and parents is secured when carrying out their functions.

4. In order to ensure that children and young people with SEN are able to be involved in the system properly, Mencap believes that information and engagement should be fully accessible. Many people with a learning disability would struggle with the complex nature of the SEN system and this has often been a requisite factor behind the exclusion of many of these individuals from decisions about their own provision. Mencap therefore calls for an explicit mention of the need for information to be provided in accessible formats such as in easy read or Braille. In addition, Mencap would also welcome references to the need for advocacy to be provided to help ensure that the views of a child can be taken into account at key moments when planning for their future support. In a school setting, a SENCO could receive extra training to ensure that children are able to participate meaningfully in school-related decisions. By setting out this abiding duty, Mencap believes it can help to ensure that the involvement of children, young people and parents is an underpinning principle of the reforms.

5. Mencap also stresses the need to ensure that decisions are taken in the best interests of the child. While parents have a vital role to play in securing the best education for their child, it is important that their views do not supersede those of the child. Mencap believes there is scope for arrangements to be made to encourage a two-way dialogue between a parent and their child so that decisions can be explained to, and in some instances informed by, the child. This could involve a key worker being under a duty to ensure that this interface occurs.

· Local authorities should be under a strengthened duty to ensure meaningful participation of children, young people and parents is secured when carrying out their functions

· There should be an explicit mention of the need for information to be provided in an accessible format and for an advocate to be made available to assist in meaningful participation.

Special educational provision, health provision and social care provision (Clause 21)

6. Mencap welcomes the extension of the definition of special education provision to include "health provision or social care provision which is made wholly or mainly for the purposes of the education training of a child or young person". By attempting to enshrine established case law into primary legislation, Mencap believes this will help to ensure current statementing rights are maintained within the new reforms.

7. Mencap is, however, slightly concerned that special educational provision is restricted to being "wholly or mainly" in relation to education or training. This would appear to preclude those other provisions which, while still pertaining to education or training, fall below the high threshold that is set out in the Bill.

· The threshold for special educational provision should be lowered from wholly or mainly to include all provision that pertains to education or training.

Identifying children and young people with special educational needs (Clause 23)

8. Mencap welcomes the fact that the Bill has been amended from the draft SEN clauses so that "any person" may bring a child or young person to a local authority’s attention. This helps to ensure that current statementing rights are not eroded in the Bill.

9. Local Authorities are under a duty to identify all children or young people in its area who may have SEN. This places the necessary onus on local authorities to support children with SEN and takes this additional responsibility away from parents. In carrying out this function, Mencap hopes that local authorities will be subject to substantive guidance so that they take the necessary proactive measures to identify children and young people and that all children with SEN are prioritised.

10. Mencap is concerned that the government’s approach to SEN reform will not be conducive to ensuring early and effective identification. It is encouraging that the government has focused on the importance of health visitors, who can provide routine practical and emotional support to parents in vulnerable positions. However, the educational focus of the reforms risk precluding those children with primary social care or health needs from holistic support until educational needs can be identified. For more detail about this, please see paragraph 29. Mencap does not understand how local authorities – even if they have the best of intentions – and other individuals can be expected to identify all children with SEN at an early age if the only triggers for identification are education-focussed.

11. Mencap believes that early identification could also be aided by adopting the ‘Early Support’ model [5] in which a child qualifies for such services if they use multiple universal services. This could help to safeguard the government’s early intervention priorities.

· The early support model should be extended to help identify children with multiple needs at an early stage of their life.

Joint commissioning arrangements (Clause 26)

12. Mencap supports the proposals to place a duty on CCGs and local authorities to make arrangements to jointly commission services for children and young people with SEN. Currently, there is a disconnect in the way in which health agencies and local authorities interact in the making of special educational provision. This is often because the two are seen as separate elements of a child’s life, but Mencap believes that effective health provision can be as important to someone’s educational attainment as those more direct educational support arrangements. Consequently, the potential for this proposal to help identify local need across education, health and social care provides an ideal opportunity to rectify this issue.

13. However, Mencap notes that the terminology in clause 6 states that there must be "arrangements for considering and agreeing" joint commissioning. Mencap is concerned that this does not establish an actual duty to ensure that these commissioning arrangements are secured – the only duty is to agree what provision is to be secured and who should secure it. The explanatory notes state that this duty could be fulfilled through developing Joint Strategic Needs Assessments (JSNAs) and Joint Health and Wellbeing Strategies (JHWSs). We are therefore concerned that these arrangements might not be implemented and the joint commissioning obligations might merely be used to establish local need and not delivery of it. Mencap therefore calls for a duty to be placed on CCGs to commission the support that is jointly arranged with the local authorities.

14. For these arrangements to work – particularly through using JSNAs and JHWSs – there needs to be effective co-ordination with Health and Wellbeing Boards. Mencap understands the complications involved with placing a duty on a officers of local authority to co-operate with other officers in the same authority, but it is in everyone’s best interests to avoid duplication of effort. Therefore, Mencap believes these internal networks should be established and clarified by the local authority itself. For example, Mencap would advocate the value of HWBs having an education representative on them to advocate for the holistic planning of local strategy to benefit local need.

· There should be a duty on CCGs to ensure that commissioning arrangements are secured and delivered.

· There should be strong internal guidance about the links that must be established between Health and Wellbeing Boards and legally established co-ordination bodies such as Children’s Trusts.

· There should be an education representative on HWBs.

Duty to keep education and care provision under review (Clause 27)

15. Mencap is supportive of the continual duty on local authorities to review their education and care provision and to ensure that it is "sufficient to meet the educational needs and social care needs of the children and young people concerned". This is a welcome acknowledgement that need evolves over the course of time and provision for it should move with changes in demographics.

16. Also welcome is the extension of the duty to consult to children, young people and parents. As this was previously only education institutions, it provides a positive refocus on the needs and views of families.

17. In the interests of ensuring that services are sufficiently meeting local need, Mencap believes the proposals could be informed by Clause 3 of the Care and Support Bill which makes provision for care market development with a specific view to help shape the market in future in order to be able to cater for future care needs. In light of these provisions, the sufficiency of provision duty seems somewhat short-sighted and reactive in its nature. Mencap would recommend a similar duty on local authorities to do what is outlined in the Care and Support Bill – to ensure that, in addition to their duty to ensure sufficiency of provision, local authorities must address future market need by using EHCPs as an accurate indicator of both what is currently needed and what will be needed. As well as specific service provision, this should also incorporate professional development so that there are enough professionals to help to deliver future levels of need.

· Subsection 2 should include a duty for a local authority to address future market need by using the provision information contained in EHCPs as an indicator of future demand.

Co-operating generally (Clauses 28-29)

18. Mencap welcomes the scope of co-operative functions by which local authorities must abide. However, Mencap notes that there is currently no duty for local authorities to co-operate with personal budget holders. Given that personal budget holders will play a big part in arranging the specifics of how provision is ultimately delivered, it will be essential for local authorities to co-operate with them. We therefore call for personal budget holders to be added to the list of providers which a local authority must consult in exercising its functions (subsection 3).

· Add personal budget holders into the list of providers which a local authority must consult in exercising its functions (subsection 3)

Local offer for children and young people with special educational needs (Clause 30)

19. Mencap welcomes the principle of the local offer as it is intended to provide parents with the tools to request the appropriate services for their children and ensure their right to education are being met within their area. The lack of available and accessible information currently on offer for parents often prevents them from accessing all the support to which they are entitled. 8 out of 10 of parents of children with a learning disability who completed Mencap’s Green Paper survey said that a ‘Local Offer’ set out by Local Authorities would increase their confidence to ask for support for their child. [6]

20. However, Mencap is concerned that there is currently no duty to provide what is set out in the local offer. We appreciate that local authorities will primarily have the best of intentions when outlining local provision. However, the wording in subsection 1 that the published information is of provision which a local authorities "expects to be available in its area at the time of publication" relates to anticipated provision rather than actual provision. This could result in local offers outlining a statement of aspiration rather than of actual provision and that this would distort what provision is currently available. Given that the government have stated their intention that local offers will help local authorities to identify gaps in local services, any inaccuracies in the offer will have repercussions for a council’s perception of where improvements can be made. Without an explicit requirement for local authorities to provide what is actually set out in the local offer, there is a danger that these issues will arise.

21. Mencap also welcomes the enhanced scope of the local offer that the Bill promotes compared to the draft SEN clauses. By including "provision to assist in preparing children and young people for adulthood and independent living", the government appears to be acknowledging the fact that a child or young person’s development covers areas beyond education and training. Particularly welcome is the inclusion of employment provision – Mencap believes that there is huge scope in this Bill to increase the employment potential for young people with SEN (please see paragraph 39 for more details).

22. Furthermore, the Minister has set out that "each service will be accountable for delivering what is set out in the local offer and if families are unhappy with what they receive or what is available they will be able to take this up with those eservices". Mencap believes that local services cannot provide the regional oversight that a council can. Therefore, we believe that this does not place the necessary accountability on the local authority itself to ensure that local SEN provision is accurate or sufficient or even that a local offer accurately reflects local provision.

23. As was mentioned in paragraph 4, Mencap also stresses that information – such as that in the local offer – should be readily available to everyone. This helps to ensure that everyone can benefit from them and that children and young people with a learning disability, for example, can be informed about the local provision that is available to them so they are empowered to make choices about their own lives. Therefore, Mencap calls for the proposals to stipulate that regulations should include details about how the local offer will be publicised, on what platforms and in which formats. For example, information should be provided in accessible formats such as easy read and Braille.

24. There is also a danger that there will be regional variations in the quality and scope of the local offer creating a postcode lottery of support. Mencap understands that local offers will be reflective of local need and resources, but contends that, in order for it to be in the best interests of children, young people and their parents, there should be a minimum level of provision which should be reached in terms of service numbers, diversity and quality. As many children with SEN move to new authorities with specialist educational and residential settings, there is also the danger that some areas with less provision will be unable to provide the support required by a child. This will either result in insufficient support or could prevent them from accessing the education they desire. Mencap acknowledges the government’s rhetoric that regulations will provide a "common framework" for local offers, but we believes that this will mean that this principle is not as integral a part of the legislation as it would be if it was on the face of the Bill. Even when the regulations are published, they will also be easier to change that primary legislation, so there is less of a guarantee that local offers will continue to be subject to a national framework. Consequently, Mencap calls for the availability of a national framework on the face of the Bill to inform the development of a local offer and ensure that there is a minimum threshold of provision which should be reached. In order for this to meet the needs of all disabled children and those with SEN, the minimum standard must meet the needs of children with the highest level of need.

· There should be a legal duty on local authorities to deliver what is set out in the local offer.

· Local offers should include, in subsection (1), further information about provision for advocacy and employment.

· Local offers should be subject to some form of national standard in terms of their development, scope and content.

· Regulations should include details about how the local offer will be publicised, on what platforms and in which formats. These expectations of the regulations should appear on the face of the Bill.

Advice and information for parents and young people (Clause 32)

25. Mencap welcomes the extension of the duty on local authorities to provide advice and information for children and young people as well as for parents. We would, however, like to see this extended to ensure that children are made aware of services in their area. Mencap believes there is great value in promoting the involvement of children in decisions about their own lives before the designated age of 16 so that they are more able to understand their support needs in the future. Please see paragraphs 52-56 for further comments on this theme.

26. Mencap also stresses the importance of ensuring that this information is accessible for children and young people who might receive it, as well as for parents with a learning disability. As mentioned in the previous section, Mencap calls for the proposals to impose a duty on local authorities to ensure that the advice and information provided is in an accessible format such as easy read and is available in a variety of formats to increase reader numbers.

· Extend the provision of advice and information to children as well as parents and young people.

· There should be a duty on the local authority to ensure that the information provided is suitable for all audiences e.g. accessible formats, age appropriate, etc.

Education Health and Care Plans (Clauses 36-47)

27. Mencap welcomes the concept of a single assessment and EHCP. In theory, this could help to make the SEN process less burdensome for families and children and young people and marks a move towards seeing a child or young person's development as a holistic process in which a number of elements of their life affect their ability to learn. This idea was supported with caution by many parents who completed our survey [7] , commenting that:

28. "[This is] one good idea as there would hopefully be a better transition into later life/adult services but would need regular reviews depending on the changes in their condition and certain transition times e.g. between key stages, primary to secondary and into college or work".

29. Mencap also welcomes the amendment from the draft SEN clauses to maintain the right for parents, young people and others to request an assessment. This should help to identify more children and young people who have SEN and takes the emphasis away from a local authority solely determining who it decides to assess,

30. However, Mencap seeks clarification as to how the proposed framework differs and improves upon the current ‘Common Assessment Framework’ (CAF). The CAF has been well employed nationally by child services and has often succeeded in bringing professionals together. With its aim of supporting practitioners "to assess children and young people’s additional needs for earlier, and more effective services, and develop a common understanding of those needs and how to work together to meet them", [8] the CAF should achieve the aims identified in the proposed EHCP. Mencap would urge the government to give greater consideration to the future of the CAF within the new assessment framework so that effort is not wasted in developing something which could be equally applied by an existing framework. By upgrading the legal status of the CAF from being voluntary, there could be the potential to integrate the CAF and EHCP. This may increase the opportunity for a single multi-agency approach to holistically assess a child’s needs and would also help to ensure that the assessment framework can be nationally standardised in order to improve quality and equality of assessments across the country.

31. It is because of the potential benefits of the single assessment and EHCP that Mencap warmly welcomes the recent announcement from the government that CCGs will be under a duty to "secure services in education, health and care plans for children and young adults". Mencap believes that the principle of giving families a right to receive the support they are assessed for, rather than having their support determined by who provides it is a very positive step in the right direction. However, Mencap is unsure that this provision will cover all of a child or young person’s health-service-provided support as set out in an EHCP. CCG commissioning arrangements are more likely to focus more on therapies than the integral clinical needs that some children and young people with SEN may have. For example, individuals with profound and multiple learning disabilities (PMLD) have particularly complex health conditions that require specialist health interventions in order to help their education. As such, these needs are more likely to be met by the commissioning arrangements of the NHS Commissioning Board due to the provisions in the Health and Social Care Act 2012 which stipulate that specialist services require the commissioning oversight of the national board rather than of local CCGs. Mencap therefore argues that a similar duty to that which has been imposed on CCGs is extended to apply top the NHS Commissioning Board to ensure all health needs listed in an EHCP are delivered.

32. Mencap does, however, note that there is no parallel duty on social care agencies to deliver what is set out in the plan. Mencap believes that, unless education, health and social care services are all equally involved in SEN provision, the positive developments with regard to health could be undermined. Mencap would call for health and care agencies to be under an equivalent duty to the one education agencies are under in order to ensure that a child receives what they need. This also helps to encourage accountability for parents, children and young people would have recourse to appeal to someone if their needs were not being met. Mencap would also encourage the use of shared budgets when agreeing an EHCP – this would help to ensure that there was an equal stake across all agencies when planning someone's provision and would avoid any potential negotiation over who pays what which can lead to unnecessary and unhelpful delays.

33. Mencap recognises and welcomes the new duty on health services – such as Clinical Commissioning Groups (CCGs), NHS Trusts or Foundation Trusts – to bring children under compulsory school age to a local authority’s attention if the health they think the child may have SEN. However, Mencap still has concerns about the trigger points for an EHCP. Because the route into an EHCP is via an educational referral, those disabled children with primary health and social care needs would miss out on receiving the holistic support provided in the plan. As has been mentioned earlier, this includes 25% of disabled children and Mencap believes it is not acceptable that this group should not receive this form of support. It also risks discriminating against a certain group of children who might be denied the early interventions that the plan could provide due to a lack of early identification. For example, some children with a learning disability are not diagnosed as having one until they are in an educational setting when it becomes more noticeable that their development and ability to learn is slower than their peers. Research has shown the value of providing appropriate early interventions both financially and - more importantly - for the child's ability to develop and reach their potential. If children with a learning disability miss out on this early education because they require an educational need to trigger a plan, their future development could be hampered.

34. Given the importance of timely provision being made for a child or young person, Mencap calls for clearer time frames for conducting assessments and putting them in place. Mencap appreciates the extra pressures that are currently being placed on local authorities means that capacity to complete assessments will vary, particularly in those areas with higher numbers of children and young people with SEN. However, as mentioned earlier, Mencap believes it might be reasonable for a local authority to detail its internal time frames for completion of assessments, particularly as time frames currently exist in the statementing process.

35. Mencap welcomes the extension of entitlements into further education and training, particularly the move for further education institutions to be named on an EHCP alongside the notable addition of Academies. Mencap notes the government’s stance that those of compulsory school age who become NEET will be able to maintain an plan whereas those aged 19-25 who become NEET will have a review to determine whether they wish to go reengage in education or training. However, Mencap would advocate for the continuation of an EHCP until 25 for everyone receiving it, otherwise it could create a perverse incentive for parents or young people to remain in education when it might not be the best course for their development. This would also help to negate the negative impact that could result from someone moving in and out of employment and training - namely multiple reassessments which would undermine the purpose or a single assessment process and unnecessary upheaval for the young person and their parents.

36. Mencap urges the importance of a plan in helping someone to further their skills and help them to enter employment or live more independently. We believe development goes beyond education and training and is something which every young person is subject to. Mencap therefore urges the importance of a plan in helping someone to further their skills and help them to enter employment or live more independently. With levels of employment for people with a learning disability known by social services as low as 7%, and many young people with a learning disability not in education, employment or training (NEETs), transitional arrangements from children to adult services need to be improved significantly if this part of the vision is to be achieved. Mencap therefore believes it is imperative that young people are able to continue to receive an EHCP if they undertake employment support. The government announced the welcome inclusion of Apprenticeships as a programme under which someone’s support would remain, but Mencap is surprised that other forms of employment support were omitted. We see no reason why, given the inclusion of apprenticeships, people on other programmes such as supported internships, the work programmes and work choice would not also be eligible for continued support.

37. On this subject, Mencap also has concerns about the provision in Clause 47 regarding the release of someone from an EHCP if they a re subject to a custodial sentence. Mencap believes this is at odds with the recently published Youth Justice Green Paper which proposes to put "education at the heart of detention". As an EHCP exists specifically to aid some young people’s educational attainment, Mencap believes an individual’s education in custody would therefore be compromised and the aims of the Youth Justice Green Paper would be undermined. Mencap accepts that certain provision set out in an EHCP might not apply while someone is in custody, but that this could be easily overcome by conducting a reassessment of a plan when someone enters custody so that the plan best reflects their change in circumstances.

38. that Academies could be used to run youth detention centres. If education institutions are used for young people in custody, Mencap believes that the loss of an EHCP could compromise the educational benefits that these types of Academies could offer. We therefore call for EHCPs to be maintained for young people in custody.

39. Mencap is also concerned about the potential for a period of time to lapse between a child or young person being released from custody and the resumption of their EHCP, if they have previously received one. Unless there is a duty on the local authority to make contact with the individual when they leave custody, the child could miss out on valuable support for a period of time which might affect their development and could increase the likelihood them to re-offend.

40. Mencap notes the reference to ‘outcomes’ in Clause 37 and believes that this could provide an opportunity for an EHCP to promote a child or young person’s overall development. The development of outcomes is a very delicate issue and should be looked at in more detail. Mencap would advocate for them to be educational, health and social care outcomes so that achievement can be sought across all aspects of a child's development and that these outcomes should be agreed by all agencies and the parents and child/young person concerned. As a result, Mencap believes that the principles of wellbeing which are set out in Clauses 25 and 65 and also in the draft Care and Support Bill provide a way of uniting all the different aspects of someone's development. It also means that a child or young person's life is seen as a whole so that it is possible to measure the combined impact which all different elements of their life - including the cumulative impact of all their support provisions - have on their ability to be happy and more conducive to fulfilling their potential. It is also necessary to consider the changing nature of outcomes as someone develops, their needs change and their ambitions may alter. Again, the wellbeing concept is a more constant measure throughout the changing stages of someone's life. That is not to say that specific outcomes might be sought in the EHCP as well, but that these specifics should be seen in the context of someone's wellbeing.

41. In relation to this, Mencap is unclear about the overall outcomes which might be sought a local level to determine the success measures of its special educational provision. Whilst there are indicators and measures of progress built into an individual's EHCP, these only show individual successes. Mencap is not aware of any overarching indicators which show that the change in provision that will occur as a result of these reforms has had a positive impact on special educational provision. Without these, it could prove difficult to identify what improvements still need to be made and in which areas. As a result, local authorities should be under a duty to create a set out of outcomes at a local level which allows for comparable data so that improvements, or otherwise, can be shown and measured. We do not believe that the new duty to report provision is sufficient to gather the necessary level of detail and call for a mechanism which is similar to the previous national disabled children’s services parental survey which we know was valued by local authorities. Mencap would again advocate for this to be done using the wellbeing principles so that change is shown in terms of its overall impact on a child or young person's quality of life.

42. Mencap supports the measures to conduct reassessments of someone's EHCP to ensure that it is always appropriate for their needs. However, Mencap would call for the Bill to place more of an emphasis on reassessments of an EHCP to happen in anticipation of such key phases. In addition to this, Mencap would call for these reassessment processes to be done in tandem with key phases in other areas of someone's life such as in their social care provision. The Care and Support Bill proposes for a child's needs assessment to take place before someone's 18th birthday to ensure that adult social care provision is planned for in advance. Mencap would therefore call for an explicit requirement for a reassessment of an EHCP to take place in tandem with this child's needs assessment to ensure that the child/young person does not have to undergo multiple assessments and, more importantly, to ensure that their education and social care provision is properly aligned and mutually informed when someone progresses into adulthood. It is essential that any reassessments are done in a highly personalised way to ensure that they reflect the changing needs of a child. When asked, parents who responded to Mencap's survey stated that would want a combination of monthly, per term and annual reviews according to individual need and on the identification of new needs:

43. "[The Education, Health and Care Plan] needs to be flexible to allow for changes in the child's needs. It should contain everything about my child’s health and education. It would need to be very specific for the time it was written but fluid enough to change as the child develops". [9]

44. Once an EHCP finishes, Mencap has concerns that there is not enough clarity about the procedure that should take place to transition someone out of education. At present, there seem to be no measures in place to ensure that this process is planned for in advance so that the individual can be prepared for the next phase of their life. Unless this issue is tackled, there is a risk that the transition period out of education is merely pushed back a few years. Mencap would advocate an entitlement to be built in for someone at this stage of an EHCP to have a Care and Support Assessment to help plan for their needs and to account for the change in provision which will occur.

· There should be equivalent duties on social care and the NHS Commissioning Board as there are to education and CCGs to deliver what is set out in an EHCP. This includes facilitating arrangements for shared budgets between all agencies.

· Health and social care needs should also be considered as triggers for an EHCP.

· Support employment programmes should be included in the definition of education health and care.

· EHCPs should continue to the age of 25 for everyone on one, regardless of whether they are in education, training or custody.

· Local authorities should be under a duty to contact a child or young person after they leave custody in order to arrange for the resumption of an EHCP.

· EHCPs should have education, health and care outcomes and that these should be based on the wellbeing principle outlined in Clauses 25 and 65 of the Bill and Clause 1 of the Care and Support Bill. When these outcomes are reaches it should trigger a reassessment of someone’s EHCP.

· There should be an overall national framework of outcomes to help measure the success of reforms on a local and national level.

· Reassessments of someone’s EHCP should take place in advance of key phases in a child or young person’s life. They should also happen at the same time as a child’s needs assessment takes place and should include an entitlement for a care and support assessment when the plan ends.

Personal budgets (Clause 48)

45. Mencap is worried that personal budgets in education have not be adequately and thoroughly tested by the pathfinders. Consequently, there is little available evidence about how they might work in practice to be able to enable a fully informed debate on this issue.

46. Mencap has concerns that personal budgets could be given to people without the knowledge of how to use them or of the available support which can be bought with one. The majority of participants in our parent survey, when asked to describe the benefits and drawbacks of having a personal budget, commented that the increased level of responsibilities attached to finding, costing and commissioning support for their child would outweigh the potential benefits of individualised support packages. We would therefore advocate the inclusion of a specific reference to brokerage support as part of personal budget provisions.

· 3 (j) should specify brokerage support as an example of the information, advice and support with regard to personal budgets.

Mediation and resolution of disagreements (Clauses 51-54)

47. Mencap welcomes the amendment in the Bill from the draft SEN clauses so that mediation is no longer compulsory before someone can go to the 1st Tier Tribunal. We believe that mediation has a role to play where a family believes it to be necessary, but requiring it is not a substitute for a continuing dialogue between parents and the local authority.

48. Mencap welcomes the move in clauses 53-54 to ensure that children are able to be involved in the appeals process. However, again, there needs to be a safeguard in place to ensure that any information given to the children is in an accessible format and is age appropriate.

· Subsection (2) of Clause 53 should ensure that the order by the Secretary of State on the pilot schemes makes explicit reference to the need for the form of the advice mentioned in subsection (f) to be in an accessible and age appropriate format.

· Subsection (3) of Clause 54 should ensure that the order by the Secretary of State on the pilot schemes makes explicit reference to the need for the form of the advice mentioned in subsection (f) to be in an accessible and age appropriate format.

Provision and publication of special needs information (Clause 65)

49. Mencap again welcomes the inclusion of wellbeing as a measure of the effective provision for someone’s special educational needs and that this is similar to the draft Care and Support Bill. Mencap would support this measure being applied to anyone’s special educational provision outcomes as has already been mentioned.

50. Mencap also believes that the information-gathering exercise to be undertaken as part of this clause could give a good opportunity to collate more detailed information on special educational needs in order to better understand the variations of need within the SEN spectrum. Mencap believes that the broad definition of SEN often means that the differing impairment types of children and young people are hard to identify on regional and national level and this means that educational inequalities for particular groups can be hidden and not addressed properly. Mencap therefore calls for this information gathering exercise to be the vehicle through which to finally address this issue and collect data on specific groups within the SEN spectrum. It could also be used to address the existing variations in definitions which exist between education and health settings. Especially as the wellbeing measures of the information gathering exercise replicate the wellbeing clause of the Care and Support Bill, Mencap believes that there should be a uniform definition for impairment types which transcends both health and education.

51. Mencap notes that the information on SEN only goes up to young people aged under 19. Mencap believes that, in order to get a better picture of how to improve the wellbeing of all young people with SEN, this information should relate to the wellbeing of individuals across the full spectrum of the EHCP.

· The wellbeing concept should be used at the heart of any outcomes sought as part of someone’s special educational provision.

· The information gathered on SEN to inform the Secretary of State’s report should seek to disaggregate those within the SEN spectrum by impairment type.

· The information gathering process should also trigger the development of a uniform definition of impairment types across both health and education settings to remove the existing variations.

· The information published by the Secretary of State should seek to improve the wellbeing of all children and young people with SEN up to the age of 25.

Code of Practice (Clause 66)

52. Mencap is concerned that the Code of Practice will not be laid before Parliament and this means that it will not be viewed by both Houses before the final Code is laid in regulations. The net result is that there will only be 40 days’ worth of scrutiny of it. It should therefore be subject to more scrutiny than is currently intended.

53. Mencap also notes the vague reference to revision of the Code from "time to time". Mencap stresses the importance of the obligations on educational institutions becoming entrenched and not subject to frequent change. This helps to clarify their role and enable it to be established so that there is a clear understanding of institutional obligations and variations in practice can be minimised. Equally, it helps parents to know their children’s rights and provides them with a tool by which to hold schools and other agencies to account. Mencap fears that continual revision of the Code could undermine this and so requests that any reference to revision of the Code should be more prescriptive in nature and should include time frames which do not amount to regular change to it.

54. Mencap also notes that early years’ providers are omitted from the list of institutions to which the Code applies and this should be rectified. It is, of course, essential that the Code is adhered to throughout a child or young person’s education and by omitting early years’ providers from this list, the government risks undermining its aims of engendering greater early intervention and identification in the SEN system. Mencap therefore calls for their inclusion in the list of institutions to which the Code applies.

55. Mencap believes the proposal to reduce the guidance in the SEN Code of Practice on Individual Education Plans (as set out in the SEN Green Paper) undermines the philosophy of EHCPs being focused on ensuring high outcomes for disabled children. Whilst acknowledging there are inconsistencies in the delivery of IEP, their aim recognises that children's achievement can vary term to term. These could be used effectively to inform the direction of EHCPs. This would represent a willingness to involve children in their support.

· The Code of Practice should be laid before Parliament for proper and full scrutiny.

· The reference to revision of the Code should be more prescriptive in order to avoid constant change to it.

· Early years providers should be included in the list of institutions to which the Code applies.

· Maintain the current level of guidance on IEPs within the revised Code of Practice

School Action/School Action Plus

56. Mencap is concerned about the plans to merge School Action and School Action Plus into one category. Mencap understands that there is an intention to ensure that children with SEN receive support as quickly as possible and that, by reducing the number of categories through which a child should go, this proposal may help to achieve this. Mencap also believes that this could chime with the opinion of some schools who say that they are unable to access outside support and so are assisted by the conditions of School Action Plus which enables the outside support to be accessed quicker and more easily.

57. However, Mencap urges caution about the unintended consequences that might result from endorsing moves for schools not to provide in-school support for pupils with SEN as they currently do through School Action. Whilst some schools would support this move, others claim that School Action is a useful stage in order to draw down support and help within the school in order to develop a more inclusive practice. If this stage is removed, there may be less incentive for some schools to develop SEN provision in-house whereas some will keep on doing so. This will widen the gap between those which are SEN-friendly and those which are not and could create a situation in which SEN students are ‘ghettoised’ in some schools and omitted from others. Mencap believes this is not in the best interests of the push towards an inclusive education and, more widely, an inclusive society.

58. Equally, where the previous system of School Action and School Action Plus identified differing levels of need, a single category could tighten eligibility in an effort to reduce the number of pupils identified with SEN. This could further diminish the quality of support given to and outcomes of children ‘not identified’ as being in the SEN category. Mencap would urge that any definition that is developed in conjunction with the SEN Category is encapsulating of the needs of children currently identified under the School Action and School Action Plus and must not limit the requirement on schools to adequately assess and subsequently provided support for children with any level of educational need.

Interplay with the Care and Support Bill

59. Mencap is also unclear as to how EHCPs will interplay with the Care and Support Plans (CSPs). Mencap is aware that CSPs have been developed to be able to slot into other plans and welcomes the fact that this engenders a potential for CSPs to form the Care part of an EHCP. This requires an EHCP to be flexible so that the care element of the plan is able to change as the child or young person’s care needs change. Mencap believes there is a need for the Bill to be clearer about whether a CSP is universally expected to form the care element of an EHCP – as Mencap understands the case to be – or whether alternative methods are anticipated such as for a CSP to run alongside an EHCP as a separate plan.

60. In light of the fact that there is no duty on health and social care providers to deliver what is set out in an EHCP, Mencap is unsure how this would work if a CSP is to make up the care element of an EHCP. We are concerned that, with a duty to provide social care support as part of the Care and Support Bill provisions and no duty to provide social care support as part of the Children and Families Bill provisions, this could create a divide in someone’s social care support based on whether there is a statutory responsibility to provide it or not. This has implications for the ability of a CSP to be integrated into an EHCP. It might also lead some cash-strapped authorities to use this anomaly to justify a refusal to provide a certain service on the basis that it comes under an EHCP.

61. Mencap is concerned about the current disconnect between eligibility for children’s and adult’s social care support. The two systems currently operate under different eligibility thresholds, with a number of the children receiving social care support not qualifying for adult social care support when they reach 18. As EHCPs span both children and adult care support systems, there might be a situation in which someone on an EHCP from a young age might not be eligible for a CSP. As CSPs are anticipated to constitute the Care element of an EHCP, this could mean that their social care support could alter substantially as they pass 18, and with it the support they receive as part of their EHCP. Given the role given to education, health and care in order to aid a child or young person’s development, if their social care support is seen in isolation from the other two areas of the plan then there is a risk that this holistic approach to someone’s development could be undermined. For this reason, Mencap would call for any assessment for a CSP for young people on EHCPs to be based on what is set out in their EHCP.

62. Mencap notes that the Care and Support Bill includes provision to develop a new national eligibility and assessment framework and that this is still in development. We therefore appreciate that it is not possible to determine the likely numbers of children and young people who will be eligible for both children’s and adult’s services. However, this means that decisions about matters which affect EHCP provision will be made after the Bill Committee has considered the SEN provisions. Mencap does not, therefore, believe that it is possible to consider the full ramifications of the various components of an EHCP at this stage and urges caution about proceeding without the availability of such information.

63. Mencap also notes that the provisions in the draft Care and Support Bill to provide information and advice around social care directly mirrors the framework set out in the local offer clauses on the SEN proposals. Mencap recommends that these two sources of information and advice are merged.

64. Mencap also calls for the inclusion of trigger points along the lifespan of someone’s EHCP for an assessment of someone’s CSP so that they are able to prepare for the loss of their educational support. Mencap envisages this provision replicating Clause 39 of the draft Care and Support Bill in which an assessment of someone’s adult social care needs is made to help ensure that changes in someone’s educational circumstances are mirrored by a simultaneous change to the social care element of their EHCP. Mencap believes this provision should sit in the SEN clauses as the key trigger points are related to someone’s educational progress.

65. Mencap is concerned about the measures in Clause 49 of the Bill to cease the interim provision of child social care support beyond the age of 18 (as set out in the draft Care and Support Bill) if an EHCP ceases to be maintained. Mencap believes that this measure does not take account of an individual’s additional health and social care needs which would also be compromised in this event as they would lose all social care support until adult social services picks up the tab. This could have a serious impact on an individual’s development at such a crucial time in their life. Mencap believes this gives an extra incentive for EHCPs to be maintained until the age of 25 regardless of whether someone is in education or training.

66. In light of the considerable areas of crossover between the Children and Families Bill SEN proposals and the draft Care and Support Bill, Mencap suggests that the Education Select Committee should include in its recommendations that the Joint Committee considering the draft Care and Support Bill should consider how the two Bills cross over.


[1] Mencap sent out a survey to parents of children with a learning disability to inform our initial response to the SEND Green Paper in 2011. Our survey response (with the full survey details at the back) can be accessed here: http://www.mencap.org.uk/sites/default/files/documents/Mencap's%20response%20-%20'Support%20and%20Aspirations%20a%20new%20approach%20to%20special%20educational%20needs%20and%20disability'%20Green%20Paper.pdf .

[2] Mencap survey, p.12

[3] Mencap survey, p.9

[1] Please note that these points both complement the earlier summary and highlight some of the other issues with regard to the draft provisions.

[4] https://www.education.gov.uk/publications/eOrderingDownload/01143-2009DOM-EN.pdf

[5] https://www.education.gov.uk/publications/eOrderingDownload/ESPP33-PDF1.pdf

[6] Mencap survey, p.12

[7] Mencap survey, p.9

[8] Common Assessment Framework: www.education.gov.uk/publications/eOrderingDownload/CAF.pdf

[9] Mencap survey, p.9

Prepared 15th March 2013