CHF response to the Education Select Committee’s call for evidence -SEND

Draft legislation on Reform of provision for children and young people with Special Educational Needs

Children’s Heart Federation Education Select Committee Submission

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1. Introduction


1.1 The Children’s Heart Federation (CHF) is theUK’s leading children’s heart charity. It has 23 member groups from across the county which are comprised of local/regional support groups or charities representing children with specific syndromes and conditions. CHF, for almost 25 years, has been supporting children from birth right through until the age of 21.


1.2 We support children with congenital and acquired heart conditions (CHD). This is the most common birth defect affecting around 6000 children each year in theUK. Through advancements in medical science over 85 per cent now survive long into adulthood and as a result will move through the school and education system.


1.3 Those with congenital and acquired heart conditions have varying needs depending on the type and seriousness of their specific hear defect. Many will have learning difficulties and delays[1] and those who do not may often have varying levels of ongoing health needs related to their condition.


1.4 CHF overall supports many of the recommended reforms and sees the potential offered by the proposals of the draft Bill in seeking to simplify the assessment process. CHF also supports the focus on joint-working between various agencies, which is essential in creating a more child-centred system based on individual, varying needs for support.


1.5 We do however have a number of serious concerns which we feel need addressing and there are a number of areas identified in our response where the Bill should be adapted and strengthened to achieve the aims and potential which it offers. Our major overriding concern is that the changes suggested will mean that those with long-term and significant health needs, will not only miss out on any improvements, but may in fact receive less support moving forward.







2. The scope of the reforms and their applicability to those with long-term health conditions (provisions 1-4)


2.1 CHF welcomes the potential for comprehensive, joined-up support through a single assessment process and Education Health and Care Plan (EHC). CHF however has serious concerns that these plans will only be available to those who are currently eligible for a statement and as such have significant learning difficulties. Children with significant health needs, such as the children CHF supports with heart conditions, will often require and benefit from extra support at school and from their local authority. These needs vary depending on the severity and type of condition however these often include consideration for mobility with some requiring a wheelchair, many will experience significant levels of tiredness due to their condition requiring special consideration and adaption to be able to take part in Physical Education, and school trips. Equally they will often have medication needs as well as some having learning difficulties and delays and the various needs these then entail.


2.2 CHF strongly believes that those who have not received a statement due to having significant learning difficulties, but have health needs would still certainly benefit for being able to access an EHC plan. The benefits of such an approach have been demonstrated in the Bromley and Bexley Pathfinder, where ECH plans were available for those with complex health needs[2]. Those with a disability and/or significant or long-term health condition should have equal access to ECH plans with alternative routes available for access other than simply through the education sector. This is an essential point if these reforms are to genuinely improve the care and support for all disabled children.


2.3 The proposals to replace School Action and School Action Plus with a new single category are worrying. Sarah Teather, the previous Minster responsible for this legislation said quite clearly that no child currently receiving support through these categories would lose out because of this change. Concerns however remain and there needs to be definite guarantees that this is the case, and all those who currently receive support through these categories will equally be eligible for support. There needs to be greater clarification also about what system will be in place instead of these current support mechanisms.


2.4 CHF feels that it is essential that parents and young people being directly involved in the drawing up of plans, the benefits and success of which are highlighted by the SE7 Pathfinder case study[3], with innovate responses such as having ‘young inspectors’. It is extremely important to ensure that at all times parents and carers are respected and treated as equals to professionals rather than seen as ‘problem parents’ if they are too vocal or interested in what support they can and should be receiving for their child, which is sometimes the case. Certainly the approach from the SE7 Pathfinder seems refreshing and would be welcome in implementation of these reforms across the country.


3. New duties on the Local Authority (Provision 4)


3.1 CHF welcomes the extension of Local Authority responsibilities to all children and young people with Special Educational Needs (Provision 4), however we strongly feel that such provisions should also be extended to all children with a disability of significant health condition, otherwise such reforms risk being undermined by a lack of coherence and developing a two-tier system of support.


3.2 Local Authorities having the duty to identify all the children with special education needs in their catchment area is a welcome change, however it is unfortunate that there is not a similar duty on Local Authorities to identify all children and young people with disabilities and significant health conditions. This is a significant problem as one of the major challenges faced in planning and delivering services for children and young people with disabilities and long-term heath conditions is the lack of adequate data available about the size and needs of the population. It is essential that there is a duty on Local Authorities and schools not only to identify and measure outcomes for those with SEN but also with health needs.


4. Extension of reforms to include 16-25 year olds


4.1 CHF supports the extension of EHC plans to young people aged 16-25 while they are in further education. Certainly transition is a very difficult time for those with disabilities and long-term health conditions. This is a challenging time for all young people, but especially those who are also transitioning between children’s health and care services, where they have been for many years, to unknown adult services. This support is welcome and will, we hope, be of great benefit to those with disabilities and significant health needs, should these reforms are made applicable to these groups – as stated earlier in the submission is our desire.


5. The Local Offer (Clause 11)


5.1 The bill sets out the need for local authorities to outline a ‘Local offer’. This clarity could be very much welcomed by families. It is important that parents are able to more easily understand what services and support is available in their local area. When first diagnosed with a health condition such as a heart problem or learning difficulties and delays parents often very quickly want information about what possible support they could access now and in future. This process is a difficult and confusing one and additional help to navigate this period and available support is essential to improving access to care.


5.2 It is very important that once a Local Offer is made, that it is a genuine offer to parents and those in need. When made the Local Offer should be legally enforceable and should be able to be used by parents to ensure they receive the correct provision. If this is not the case and Local Authorities can make a Local Offer which they need to actually provider the whole process seems in fact meaningless.


5.3 We support the submission from the Every Disabled Child Matters and Special Educational Consortium and particularly their calls that there should be at least a minimum national standard to all Local Offers available to all families in the country. This would be a key part of ensuring that there is a level of fairness in provision, particularly for those with very specific and rare support needs where provision can greatly vary area to area. A basic form for offers would ensure that families in one Local Authority are not at a significant disadvantage compared to others in areas of the country where there is significantly better provision. Those with special educational needs, disabilities and significant health conditions, often smaller in number have the right to expect a basic guaranteed level of provision to meet their needs where ever they lead and to avoid a postcode lottery in support.


5.4 Local Authorities must keep their provision under review to deem whether it is sufficient to meet their evolving local need. It is important that in such a process there is adequate provision for involvement of parents, carers, children and young people to give their views about what provision is needed and the quality of current provision. This exercise should not merely by tick-box but a genuine process of engagement with users. Simply asking education providers or in fact service providers will we feel miss the mark in assessing whether services are efficient, these must be judged by users.


5.5 Local offer should involve all local agencies and services including transport, leisure and respite activities, the voluntary sector as much has possible, employment and training/skills services as well education, health and social care.


6. Key-Working


6.1 Turning to the practicalities of administering the Education, Health and Care plans, research from Every Disabled Child Matters has shown that many local authorities do not currently provide key workers to parents for support, and even those that do provide often little or no information to parents about how to access key working[4]. This is extremely worrying. CHF support access to a key worker as defined by the Care Coordination Network, ‘A key worker is a named person whom the family can approach for advice about, and practical help with, any problem related to the disabled child. The key worker has responsibility for collaborating with professionals from their own and other services and ensuring access to, coordination of, and delivery of services from the different agencies[5]’.


6.2 Access to a key work is an essential part of ensuring that families can negotiate their way through complex and overlapping systems of support. With the promise of greater joined-up working between the education, health and social care sectors through these new plans, key workers can provide the important link between these sectors. Services must work for their users and their needs rather than the reverse. The EDCM report clearly shows there is a long way to go to ensure all have access to key workers in Local Authorities. The support of key workers in working with professionals from the myriad of others services would be an essential component of the cross sector planning envisaged in EHC plans and without this it is likely they will not achieve the potential they promise. EDCM have expressed concerns that the SEND reforms will fail without urgent improvements to key working provision and we would echo these concerns.


7. Ensuring Accountability and Redress


7.1 It is concerning that there are no clear details of how parents can bring redress about their local offer. It is essential there is an open mechanism for such redress.


7.2 Openness and transparency is essential for a system which works and serves parents and families needs. As the Council for Disabled Children rightly states, ‘as well as setting out what provision is available, it is important to make it clear how additional provision is made available’[6]. Can parents directly initiate a process of assessment or does this have to be through a particular professional and setting? These are the questions parents will ask and this requires a definite answer. It is CHF’s view that requests for EHC plans and support should be able to be initiated not just in an educational setting but also by a specialist or relevant clinician who knows of the child’s medical needs, capabilities and the educational impacts this is likely to bring.


7.3 Draft Clause 29 requires parents to attend mediation before an appeal to a Tribunal. It is important this does not unnecessarily delay the hearing of a parent’s case as this could cause further distress while many parents wait to have their case for support heard. If, as the Bill implies, it is the desire to ‘cut red tape’, then simply another point of delay would go directly against this aim. It is also important, that whilst it is welcome parents will have access to an independent mediator, that the independence of such a mediator is guaranteed. It is often the case that as it is the responsibility of the Local Authority to employ or deal regularly with the mediator there will naturally be overlaps and questions can arise about their full independence. The Mediator must operate with a complete ‘Chinese Wall’ with the Local Authority and act in a neutral fashion.


8. The Importance of Information


8.1 Clause 12 requires Local Authorities to ensure that there is advice and information available for parents.  Local Authorities are already often required to make public a number of pieces of information about the services which are available, however arguably there persists problems of understanding, clearly there is a difference between make sure information is publicised and available compared to being accessible and easily viewed by parents how and where they want it. We would hope that these provisions would be extended to include the provision of information for younger people.


8.2 Age and capacity appropriate information and advice is key, with consideration about the prevalence of learning difficulties and delays for individuals with disabilities and significant health conditions.


9. The Importance of Cooperation between Providers 


9.1 Provisions in the Bill which require health providers who decide not to cooperate with requests from the Local Authority within specific timescales to explain their reasons are very welcome; such transparency over timescales however should be extended to other providers, care, local authority and educational services.  Parents have a right to understand how long they will wait for assessments and why they are not eligible for potential support.


9.2 The fact that there is no duty on the health and social care sectors to deliver the EHC plans, only a duty to co-operate with the local authority, is extremely disappointing.


10. Pathfinders and the Speed of Change


10.1 CHF would like to see further clarification that these proposals are based on a sound evidential basis and that there is substantial evidence that the reforms and new structures will deliver better support for families, children and young people. This change is rightly being billed by the Department for Education as the most significant and biggest change to Special Educational Needs policy in 30 years. As such, these reforms must not be rushed but should be carefully thought through. Certainly the pathfinder projects should be used to inform the changes, and we are sympathetic with concerns that these changes are being made before the full findings of these pathfinders are available and can fully influence the Bill and also implementation.


11. Recommendations


  • EHC plans and other provisions in this Bill should cover all children with a special educational need, including those with disabilities and significant health needs.


  • There should be statutory duties on Health and Care agencies to deliver EHC plans as well as schools.


  • There should be a legal duty on Local Authorities to provide what is outlined in their local offers.


  • There should be a basic minimum local offer for all areas including a wide range of services.


  • Parents and young people must be involved in the process, receiving key-worker support and being at the centre of their plans, having ownership of them.


  • There needs to be clearer mechanisms of accountability and redress for parents to take with set timescales.


  • There needs to be greater clarification about the changes to School Action and School Action Plus and what future provision will look like.



[1] American Heart Association, (2012) Neurodevelopmental Outcomes in Children with Congenital Heart Disease: Evaluation and Management

[2] SEND pathfinder: Bromley and Bexley Case Study (2012)

[4] Every Disabled Charity Matters (2012) Unlocking key working: information and transparency for families and disabled children

[5] Care Coordination Network UK (2004) Care coordination and key worker services for  disabled children in the UK

[6] Council for Disabled Children (2012) A briefing note on the local offer

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