Forward in partnership for children and young people with additional needs: Proposals for reform of the legislative

framework for special educational needs Consultation Response Form

Your name: Neil Ingham Organisation (if applicable): National Autistic Society Cymru e-mail/telephone number: 02920 629 300 Your address: 6-7 Village Way, Greenmeadow Springs Business Park, Tongwynlais, CF157NE

Responses should be returned by 19 October 2012 to: Additional Needs Branch Support for Learners Division Department for Education and Skills Welsh Government Cathays Park Cardiff CF10 3NQ Tel: 029 2082 6044 Fax: 029 2080 1044 or completed electronically and sent to: e-mail: SENReforms@wales.gsi.gov.uk

About Us The National Autistic Society Cymru (NAS Cymru) is Wales only member-led charity working for people affected by autism1. The National Autistic Society was founded in 1962 by a group of parents who were passionate about ensuring a better future for their children. In Wales, since 1994, we have been providing local support, services and actively campaigning so that people with autism get to lead the life they choose. Across Wales we have over 900 members, 11 local branches and provide: Information, advice, advocacy, training and support for individuals and their families

The term autism is used throughout this document to refer to all people on the autism spectrum including Kanner autism, Asperger Syndrome and high-functioning autism.

Information and training for health, education and other professionals working with people with autism and their families A Telephone Helpline, free to use. Specialist residential, supported living, outreach and day services for adults Out-of-school services for children and young people Employment training support and social programmes for adults with autism.

NAS Cymru believes that the right support at the right time makes an enormous difference to the lives of those affected by autism and we are committed to ensuring that their voices are heard. About autism2 Autism is a lifelong developmental disability that affects the way a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition, which means that, while all people with autism share three main areas of difficulty, their condition will affect them in different ways. The three main areas of difficulty are: Difficulty with social interaction. This includes recognising and understanding other peoples feelings and managing their own. Not understanding how to interact with other people can make it hard to form friendships. Difficulty with social communication. This includes using and understanding verbal and non-verbal language, such as gestures, facial expressions and tone of voice. Difficulty with social imagination. This includes the ability to understand and predict other peoples intentions and behaviour and to imagine situations outside of their own routine. This can be accompanied by a narrow repetitive range of activities.

Some people with autism are able to live relatively independent lives but others may need a lifetime of specialist support. People with autism may also experience some form of sensory sensitivity or under-sensitivity, for example to sounds touch, tastes, smells, light or colours. Asperger syndrome is a form of autism. Research has shown that 1 in 100 children has autism3 and recent figures from the NHS Information Centre has confirmed a similar prevalence figure among adults4. By applying the 1 in 100 figure we estimate that over 25,000 people in Wales have autism.
2

Throughout this document the term autism is used to refer to all conditions on the autism spectrum, including Asperger syndrome, high functioning autism and Kanner autism.
3

Baird, G et al (2006) Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP) Lancet Jul 15;368(9531):210-5.
4

Brugha, T et al (2009) Autism Spectrum Disorders in adults living in households throughout England: Report from the Adult Psychiatric Morbidity Survey 2007 London: The NHS Information Centre for Health and Social Care

Together with their families, they make up over 100,000 people whose lives are touched by autism every single day. Our Response We welcome the opportunity to respond to this consultation on what is a vital Policy arena impacting upon many children, young people and families affected by autism. We welcome the broad ambitions outlined within these proposals and whilst we believe that the proposals will require significant and careful development prior to the tabling of legislation in the Assembly for Wales, we believe there are many proposals made within the consultation document that have the potential to improve outcomes for children and young people with an ASD. In developing this response we have consulted with NAS members through our branch network and at a dedicated consultation session held in Cardiff. NAS members also submitted responses to us via email and we have consulted with our in-house education rights service who regularly assist Wales-based families in negotiating the existing and emerging SEN/AN system. Question 1 Do you agree with the proposals in section 2, and that special educational needs (SEN) should be replaced by additional needs (AN)? Agree Disagree Neither agree nor disagree

Supporting comments The concept of additional needs (AN) to improve multiagency working and cooperation is admirable but it might be worth keeping the L in Additional Learning Needs to maintain the focus on learning and the duty of all agencies to deliver the relevant provision This could also be development needs which would cover education and the links to health and social wellbeing. In consultation, parents felt strongly that whilst it was highly desirable to have all agencies coordinating care, health and education services around the child, that the aim of this process should be to support the learning and development of the child. As one parent succinctly put the case for a focus on learning and development: I dont want my childs education to be a bi-product of their care and that is a valid concern, where children with autism are placed in residential or day care settings that do not employ person-centred educational approaches. It is therefore vital that within the proposed multi-agency system, education professionals assume a lead role in overseeing and monitoring the quality of education provision, using the IDP online tool and via 6 monthly review meetings,

where that provision takes place outside of a school or dedicated education unit. In addition, it is important that there remains a means to access support where a childs needs are not primarily educational needs. We suggest that pathways of entry, relevant to each point of entry (Helath, Social Care, Education) are developed so as to ensure the shared duties are engaged at the earliest stage.

Question 2 In section 3 we state that statements of SEN should be replaced with an integrated assessment and planning process and that an integrated web-based Individual Development Plan will be developed to replace or integrate not just statements, but the range of individual plans to which children and young people might be subject. Do you:

a) agree with the proposal in section 3? Agree Disagree Neither agree nor disagree

Supporting comments PCP, IDPs and Action Plans have the potential to deliver more relevant and up to date provision but there will need to be a clear legal definition of what they should include. Without greater clarity, we are concerned about the extent to which the individual plan will replace (or integrate) all existing individual plans (and planning processes) relating to children and young people. Entitlement protection will preserve a legal entitlement to an integrated plan developed and resourced by the statutory agencies for children and young people assessed as having severe/complex needs or significant needs but not the wider group of those with identified and assessed additional needs. So it appears that a large number of children and young people will be left with weaker rights than they have currently. The legal protection for those children with entitlement protection would seem to be reasonable but the rest could be left vulnerable with unclear rights to assessment, delivery of provision and rights to challenge. This potential outcome is of particular concern in light of recent data (of which the Education Minister is aware) showing alarming increases in short term exclusions for children on school action and school action plus, which appears to correlate with a decrease in overall numbers of children who have Statements. If this new system is designed with the intention of reducing even further the number of children with legal protections and at the same time there are no new measures or

resources to ensure that those without those protections can get the help they need, we have substantive concerns that this could lead to an even higher number of short term exclusions. This cannot be allowed to happen. In consultation, parents raised the following concerns: What will trigger an IDP assessment? o Will IDPs be produced for all children currently identified as having SEN? o Will all children have an IDP? (Given broad scope of AN definition). What is the criteria / threshold for entitlement protection? o Will IDPs stipulate and quantify entitlements, making clear what support that child is entitled to and how much support they can expect (e.g. 2x 1hour Speech and Language Therapy Sessions per week) o How will entitlements be recorded/stipulated: Will there be a clearly defined and easily accessible register of current entitlements? Two-tier system? o All felt that if their children did not get an IDP with entitlement protection, they would be extremely concerned.

b) agree with the extended age range outlined in section 5? Agree Disagree Neither agree nor disagree

Supporting comments

Question 3 Do you agree that the planning tool should be a common web-based one across Wales as described in section 3? Agree Disagree Neither agree nor disagree

Supporting comments This technological improvement is welcomed. We believe that online access to the IDP will enable more frequent and easier engagement with the childs plan from parents, professionals and the child or young person.

Given that the IDP will replace all other plans for the child and that it will contain a wide variety of highly personal and sensitive information, we do harbour concerns that adequate security provisions have been made in order to protect access. Whilst we are assured that IDPs will be encrypted and password protected, it is the user-side potential for breaches of privacy that presents a greater risk: With so many people able to access the plan, privacy is reliant on home/mobile-user behaviour, network security and password secrecy. Robust IP address logging is essential to ensure all IDP interactions are recorded and traceable to a given user and device. All logged interactions should be viewable to any given user, so that a parent/child/professional can see who has interacted with the online IDP, when and what amendments were made. In consultation, parents told us that the Idea of shared and online IDP has merit but raised the following concerns: What will trigger professionals continued interaction with any given IDP? Can trigger emails be built into system, so that parental comments/updates are seen and responded to/acted upon? 6 month review sounds positive but who will be involved, and what will the formal review process be?

Question 4 Do you agree that multi-agency working see section 4 should be a requirement in the delivery of this reform proposal, i.e. that the statutory partners of education, health, and social services should be under a legal obligation to play an active part in devising and delivering services for learners with significant and severe and/or complex needs? Agree Disagree Neither agree nor disagree

Supporting comments The proposed measures and legal duties on education, health and social services to collaborate and deliver specified provision are not presented in this consultation. It is therefore extremely difficult to assess the likely outcome of what is at present a commitment to multi-agency working.

As one parent stated during consultation: Were being asked to respond to aspirations, vague aspirations, give us detail! We are extremely concerned that the proposed shared legal obligation to play an active part in devising and delivering services for learners with significant and severe and/or complex needs is weak and insufficient. Play(ing) an active part is no substitute for sharing full responsibility and accountability for (these services) , indeed the proposed legal duty is so vaguely worded as to render it toothless. We therefore urge Welsh Government to draft robust legal measures and duties, using robust language so as to frame a robust AN system in which all parties can have confidence and in which responsibilities and accountabilities are clearly defined. It must be absolutely clear, within any shared legal duties, what statutory requirements for assessment and delivery of AN services fall on each or all of the relevant bodies. Without this clarity and under the proposed duty, we are relying on the goodwill of public bodies at a time when resources are tight and contracting in real terms. Robust statutory duties and subsequent resourcing in support of those duties are a prerequisite to effective public service delivery, none more so than in regards to SEN/AN assessment and service delivery. These duties are central to making these reforms work and we urge Government to consult fully with third sector organisations in the development of these critical measures prior to publication of a White Paper. In consultation, parents felt strongly that a White Paper consultation was needed prior to tabling legislation in the Assembly, since no actual proposed legal measures are presented in this consultation document.

Question 5 We describe in section 6 the proposal to deal with concerns and disagreements in a much more proactive way. Do you agree with what is set out in that section? Agree Disagree Neither agree nor disagree

Supporting comments Thsoe consulted raised concerns about the independence of dispute resolution services, the non-binding nature of dispute resolution decisions, and whether dispute resolution would simply be another hoop to jump through before they could take a local authority to tribunal. Any move to a mandatory dispute resolution process

must tackle these concerns. For it to work the following steps need to be taken: parents should be able to take a supporter with them or access an advocate, if they choose to dispute resolution should be available between parents and schools where necessary, as well as between parents and local authorities The dispute resolution process should be available across education, health and social care dispute resolution process should commence as quickly as possible to prevent unnecessary delays to a childs education any introduction of mandatory dispute resolution must not delay the time it takes to get to tribunal professionals who attend dispute resolution meetings must be able to make commitments on behalf of the school or local authority they represent parents must have ways of ensuring that the decisions made during dispute resolution meetings are stuck to Local authorities should be funded for the extra costs of mandatory dispute resolution.

Further details of this proposal are needed to understand what it will look like. Because timescales have not been included in the draft provisions, it is not clear what impact compulsory dispute resolution will have on the length of the process. The introduction of compulsory dispute resolution must not slow the process down. If a case is going to tribunal it is likely that the child is missing out on important provision, and so speed of remedy is essential. It should still be possible for the parent or young person to put the tribunal application in as soon as they receive a decision that could be appealable. We believe that a mediator should not be an employee of the local authority. If the mediator has a close association with the local authority, for example as a former employee, or someone contracted by the local authority, parents may still have concerns about their independence and this will hamper any attempt to resolve the dispute. The resolution process for any disputes, including the proposals for a dispute resolution stage and access to Tribunal would seem to be reasonable for those with entitlement protection but we have concerns about the apparent removal of rights to challenge assessment decisions for the majority of children and young people in the additional needs category including to challenge their lack of entitlement protection when denied an IDP with that protection. This represents a significant

repealing of rights in regards to a common and critical area of dispute. With regard to points 6.6 & 7.5 (consultation document) we are concerned that the proposed general responsibility on all agencies and organisationsto positively collaborateto resolve the disagreement is insufficient. Whilst we welcome the spirit of positive collaboration this proposed duty seeks to engender, the proposed wording relies entirely on goodwill and places no clear statutory obligations on those bodies in respect of dispute resolution. As one parent stated in consultation: If it was as simple as that, they would be working together now. There must be clear, robust duties placed upon all relevant bodies to evidence a proactive approach to dispute resolution, matched with national monitoring of local success in avoiding tribunal-stage disputes. Critical to incentivising pro-active dispute resolution prior to tribunal, is the enhancement of the Tribunal function itself (see response to Q6 below). As long as the SEN/AN tribunal remains opaque and insufficiently independent, there exists no meaningful deterrent to poor practice within public bodies. Under the existing system, public bodies can be judged by the tribunal to have failed a child or children, yet face no public-realm publication of that finding. As such, there remains no clear incentive to avoid neither tribunal nor deterrent to poor practice in Local delivery of AN assessment and provision of services.

Question 6 Section 7 outlines the revised process of appeal to Tribunal. Do you agree with? a) The expanded remit for the Tribunal? Agree Disagree Neither agree nor disagree

Supporting comments We welcome the intention to explore the possibility of broadening the remit of the present Special Educational Needs Tribunal for Wales (SENTW) to include health and social care. We urge Government to establish a fully independent tribunal with a multi-agency remit that publishes all decisions online (and in paper form). The lack of transparency within the current system negates any deterrent to poor practice and incentive to avoid tribunal. This inevitably leads to more cases reaching tribunal and more lengthy tribunal cases, given that no parties are able to access historic findings, nor review precedents prior to and in preparation for tribunal hearings. We urge Welsh Government to strengthen the existing SENTW regulations to enforce publication of findings, where currently this remains at the discretion of the SENTW President (SENTW Regulations Wales, 2012: part 76: The President may make such arrangements as the President considers appropriate for the publication of tribunal panel decisions). SENTW does not currently publish decisions.

b) The proposed requirement to go to dispute resolution before a case can be taken to Tribunal? Agree Disagree Neither agree nor disagree

Supporting comments See answer to Q5

Question 7 Section 8 outlines an aspiration for a much more robust Family Partnership Service to support families and children/young people. We describe how the proposed reforms should reinforce support and active dispute resolution to ensure the need to challenge decisions is minimised. Do you agree with the general principles outlined?

Agree

Disagree

Neither agree nor disagree

Supporting comments We welcome these proposals. The National Autistic Society provides a wide range of advice, information and support to both individuals with autism and their families/carers, as well as professionals across Wales. Our website serves (high) tens of thousands of Welsh visitors every year and contains a wealth of regularly updated information relating to SEN provision, rights and entitlements. Our dedicated Helpline and Education Rights Advice Line provide free telephone advice and our branches provide an informal support network that spans Wales, allowing people affected by autism to meet and share advice SEN concerns dominate discussion at many of these groups. We welcome your appreciation of the role played by voluntary sector organisations that are critical to enhancing Family Partnership Services. We do however suggest that such organisations require appropriate resourcing in order to play this role effectively. Where Family Support Partnerships do engage with voluntary and thirdsector bodies, we urge Government to ensure that those bodies are framework contracted so as to enable them to recruit and train staff or volunteers, keep abreast of policy changes and plan their support work on a sustainable basis. Also, See Response to Q5.

Question 8 Section 9 sets out how we propose to build in quality assurance to the proposed system. Do you agree with these proposals? Agree Disagree Neither agree nor disagree

Supporting comments

Question 9 Do you agree with the proposal to develop Provision Pathways as described in section 9 paragraphs 9.8 and 9.9? Agree Disagree Neither agree nor disagree

Supporting comments We welcome this intention. Provision pathways should provide professionals and service users with a blueprint for meeting the needs of children with distinct needs. NAS Cymru has worked with government officials to develop draft ASD pathways and continues to support the development of an ASD Pathway, alongside Autism Cymru (charity) and Welsh Government. We do however, firmly believe that such Pathways should be: a) Statutory Guidance: In their own right or within a Statutory Code of Practice for AN. b) Resourced and Reviewed: Government should resource the continued review and development of pathways by third sector and professional organisations. Considerable time and expertise has been devoted to the development of pathways to date and this must continue if pathways are to reflect best practice and emerging approaches in each specific field.

Question 10 There is a specific reference to the changes proposed for post-16 specialist placements as outlined in section 10 the transfer of this responsibility to local authorities. Do you agree in principle with this change? Agree Disagree Neither agree nor disagree

Supporting comments We welcome this change, provided that local authorities will be sufficiently resourced to dispose of their new responsibilities. We seek clarity that the stated intention (10.3) to assess the potential for central provision in a small number of specialist centres across implies an intention to support or create centres that provide specialist support to children and young people with particular or specific needs for example, those with autism. If the intention is to create generic post-16 AN centres into which children with a

wide variety of distinct needs will be placed, we would be concerned that those young people will not receive the specialised and personalised care and education they require at this vital point in their development.

Question 11 This area of policy is one of the most important for the most vulnerable children and young people in our society and effective planning, provision of assessed needs support and the monitoring of outcomes is one of the most important elements. The consultation document covers the main principles of the SEN reform. Do you agree that the key elements have been addressed in this document? Agree Disagree Neither agree nor disagree

Supporting comments

Question 12 We have asked a number of specific questions. If you have any related issues which we have not specifically addressed, please use this space to report them: Scope of Legislation We believe that the scope of new legislation required to meet the aspirations outlined in this consultation demand careful development that fully engages third sector, professional and delivery bodies. Specifically, we urge Government to work alongside all partners to ensure that new legislation relating to shared duties for AN services is sufficiently robust. It is vital that legislation confers clear and non-contestable duties for assessment and delivery of AN services to all relevant agencies (notably, Health, Social Services and Education/LA). Legislation must outline where and with whom accountability and responsibility will lie and establish a clear framework within which resources can be allocated and aligned across those agencies.

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