Background
1. I am the parent of child with complex special educational needs (SEN) and have made appeals to the SEN Tribunal for Wales (SENTW) on behalf of my child. I have considered the Bill in preparation of this document, though I have not had sufficient time to read the draft ALN Code of Practice. I would expect that this will be consulted on separately when a complete draft is available.
2. I have read and largely agree with the comments already sent to the inquiry by the SENTW[1]. In responding, I have been guided by the following two principles. 1) The proposed legislative changes should improve or at least maintain my child’s ability to access support and maintain the legal rights afforded to children and young people (CYP) and their parents; 2) They should identify and address the current problems encountered by parents in the existing SEN system.
Identifying issues with the current SEN system to be addressed by the ALN Reforms
3. Problems currently encountered with practice in assessing SEN needs, provision and placements include: lack of adherence to the Code of Practice; time delay and bureaucracy in dealing with assessments; use of “SEN panels” of unknown membership to determine provision, with processes that lack transparency; relevant practitioners failing to specify exactly what provision a child should receive, to leave “flexibility” to remove provision if resources change; offering CYP placements based on their diagnosis, rather than their needs; adversarial approach throughout, despite talking the talk of negotiation; paying lip service to parental involvement, while ignoring their input; unwillingness to innovate by providing access to alternative evidence-based SEN provision, even where these alternatives are demonstrably more efficient and cost-effective for an individual child e.g. provision based on Applied Behaviour Analysis (ABA) interventions.
4. Issues with the current SENTW Appeal process include: insistence that tribunals are parent-friendly, informal “inquisitorial” processes, when they are highly adversarial and formal legal processes; lack of appropriate, free to access legal support for parents before, during and after the Tribunal appeal process; lack of independent assessment of children leads to parents having to commission independent experts to prepare professional reports to provide evidence for their case, which are very costly e.g. £1.5-2.5k for an educational psychology assessment report, plus another £1-2k for a Tribunal appearance as a witness (NB most CYP with complex needs will need multiple reports from different specialists) which is beyond the means of most parents and should be available irrespective of ability to pay; lack of feedback to SENTW on the consequences of the decisions it has taken, to inform future decision making.
5. Problems with securing the provision in the Statement include: statement wording is too vague to enforce the Statement when the provision is inadequate; lack of means to enforce provision, other than judicial review which is not available in almost all cases, either due to weak statement wording or prohibitive expense (legal aid is not generally available); problems for parents accessing information about what provision is being made by schools and healthcare providers for CYP, even where subject access requests are made.
6. Because of such issues as these (and others), only the most tenacious parents with access to professional support will attempt to question poor SEN practice and make appeals to SENTW. One should also remember that parents of disabled children are already battling many other systems for support for their children (e.g. social services, Department for Work and Pensions, etc.), as well as dealing with the additional demands that their children make on family life generally. As a result, only the most determined will realise that they are legally entitled to adequate SEN provision, let alone find the time, energy and resources to attempt to secure it. What is needed is a system that involves CYP/parents as “experts by experience” in ALN and provides a level playing field for all to challenge poor ALN decisions, irrespective of their ability to pay or personal circumstances.
7. The basis for the ALN reforms is that the existing legislation is “no longer fit for purpose”.[2] As the parent of a child with complex SEN, I cannot disagree with this more. While any administrative system is imperfect, the reasons that the current system does not work effectively, in my view and from our direct experience, is largely due to the manner in which institutions within the system have chosen to implement the provisions. Of particular note is the widespread failure to consider parents and CYP as “experts by experience” in SEN processes and the lack of transparency in decision making. I would strongly suggest that the Bill in its current form would not address these issues. I remain unconvinced that the “Transformation Programme” will effect the necessary cultural change, particularly the need for greater transparency and candour, given the lack of parental representatives involved to provide a “user” perspective[3]. It also seems that the proposed reforms also remove existing legal rights from children and their parents, while introducing new potential for obfuscation and delay.
Educational rights not needs
8. “Additional learning needs” is a weak term and the issue is one of the right of disabled children/young adults to a decent education and to suitable provision (across health, education and social care) to make this happen. The opportunity has been missed to change the discourse around provision for disabled children and young adults to one of “rights” rather than “needs”. This has long been argued for by those campaigning for the rights of disabled children to equality of opportunity in education[4]. The argument is that a discourse based on needs is exclusionary by its very nature and that a system based on asserting disabled children’s rights would be more empowering and inclusive.
Leaving important details out of the Bill for inclusion in the ALN Code of Practice
9. It is of great concern that very crucial and fundamental details have been omitted from the Bill and left for the Code of Practice. The Code of Practice will not face the same rigorous scrutiny as legislation does on amendment. Crucial issues such as the format of IDPs, timescales for assessment of ALN and issuing IDPs should be set out in legislation and not set out in the Code.
The Bill will result in erosion and loss of existing rights for CYP and their parents
10. Rights of CYP with complex needs to be included in mainstream: section 45(2) of the Bill states that parental preference for a mainstream setting will not apply when “[…] educating the child otherwise than in a mainstream maintained school is appropriate in the best interests of the child and compatible with the provision of efficient education for other children”. This appears to allow LAs/schools to argue that a child must have a special school placement if the decision passes an undefined “best interests” test and is administratively easier. In comparison with current legislation, the Bill seems to significantly weaken the position of parents who want their children to receive an inclusive education at their local school, to achieve better social integration into their local community. Essentially, the burden of proof is reversed so that now parents must prove that a mainstream placement would be in the child’s best interests, instead of the current situation where LAs must show (with a high bar) that it is either not compatible with the efficient education of other pupils or it is not possible to make reasonable adjustments to allow the child to attend. This section should be reconsidered for removal from the Bill: it appears to allow for discrimination on the grounds of disability, which is incompatible with other legal rights of CYP with SEN.
11. Parental preference for a named school appears to be undermined: the process by which a school is named in an IDP is unclear and seems to remove established legal principles of presumption in favour of parental preference. These principles must be reinstated. The process should be set out in the Bill and not left to the Code of Practice to establish. Parents of children with statements currently have a right to appeal against a refusal to comply with their parental preference to SENTW, if the school or setting otherwise than at school (including home-based provision) that they think best meets their child’s needs is not named in the statement.
12. Removal of automatic rights of parental involvement in educational decisions: the Bill seems to have removed the rights of parents to bring appeals to SENTW for CYP between the ages of 16-19. For CYP with complex SEN who will be likely to remain dependent on parents and to lack capacity, this seems perverse. Parents should retain their rights to appeal. This should also be extended to 25 years for clarity.
Principle of replacing the three-tier system with IDPs for all CYP with SEN from 0-25 years
13. Extending the age range from 0-25 years is welcome, though without additional funding, this will inevitably reduce the funding available to individual children and will affect those with complex SEN disproportionately and adversely. It is also unclear how IDPs can be prepared for CYP aged 0-3 and 16-25 and who will fund the provision.
14. Since the need for learning and support will not stop at 25 years for CYP with complex SEN, it would also be prudent to consider how provision will be kept in place as they enter adult services. At the moment, parents describe CYP with complex SEN “falling off the edge of a cliff” as they enter adult services. Moving this cliff edge from 19 to 25 years, without considering how best to resolve this issue, represents a lost opportunity to strengthen support for the most vulnerable people with complex SEN.
15. The extension of IDPs to cover all CYP with ALN also represents a significant change. First, the need to produce an IDP for all of these learners will result in a greatly increased administrative burden for LAs, schools and health boards. Second, it is not clear how a single defined IDP process can meet the needs of this very diverse group, particularly those with complex SEN who need expert assessment of needs and provision. Third, while superficially the removal of the three-tier system seems attractive, there will be no clear signposting for parents as to when they have exhausted school based provision and should be requiring the LA to take over responsibility for the IDP. It seems naïve to imagine that there will be no disagreement between parties about this issue. The consequences of extending the remit of IDPs beyond those of current statements of SEN would seem to require further consideration, to ensure fitness for purpose and to ensure that the system is adequately funded.
The IDP process
Assessments
16. It appears that the legal right for parents to request an assessment of SEN has not been replicated, and therefore this legal right to request an IDP has been lost in the Bill. This must be reinstated. It is also worrying that there are no timescales attached to any stages of the IDP process and there is no detail given about it.
17. The requirement for schools to attempt to determine provision first before decisions may be passed over to a LA also adds an additional step to the bureaucracy associated with challenging decisions made. It is also unclear when the LA or school will be responsible for assessing a learner’s needs. It is entirely possible that this could result in a self-perpetuating loop, where CYP’s cases are passed between the two. This is a retrograde step and harks back to the days before the current SEN system was created.
18. The process by which IDPs should be provided for CYP who do not attend a school is not considered. Of particular note are CYP in the following situations: in early years (0-3 years), educated otherwise than at school or “flexischooling” (dual placements, including school and EOTAS), those in apprenticeships or other provision outside schools in later years. These are significant gaps in the Bill and are likely to apply to the most vulnerable CYP with complex SEN. This also suggests that there should be a single point of contact for ALN assessments, perhaps the LA initially.
19. It is worrying that there is no compulsion to seek expert professional advice during the assessment process. Schools and LAs alone do not have (nor could they ever have) the necessary expertise to make diagnoses and provide advice on every possible condition that may give rise to ALN.[5] In particular, educational psychologists and other experts are a crucial part of the assessment process, and it is concerning that they are not considered an integral part of the IDP assessment and review process. There is therefore no comparison to be had between the rigour of the current assessment processes for statements of SEN and the planned IDP process.
20. It is also problematic that it seems schools are empowered to make decisions that reassessment is not required if they consider that “no new information that materially affects that decision”: they would not have the expertise required to make that judgement.
21. One criticism of the current system of SEN provision is that there are significant differences in the approaches of different LAs in Wales, leading to a “postcode lottery” in provision for children and young people. This would then become a “school-level lottery”, in which individual Boards of Governors will be making their own standards regarding when to prepare an IDP and determining what provision is necessary. This is obviously a retrograde step if the objective is to allocate resources on the basis of equal opportunity of access, regardless of location.
Format of IDPs
22. The format of IDPs must be set out in legislation, to avoid unnecessary complexity if each school or LA area develops its own format. It is concerning that there appears to be no mandatory content stipulated for an IDP, nor is it explicit about which professionals should contribute to it. This seems unsuitable, particularly for CYP with complex needs.
IDP pilot process: our experiences
23. My child has trialled using the IDP process during a review. The suggested IDP process is not robust and is not fit for purpose. Four questions were used to produce the IDP: what is important to the learner; what is important for the learner; what is working and should be built on; what is not working and needs to change. It is difficult to respond to these questions in a meaningful way.
24. I would consider that the more relevant issues that need to be determined are:
25. It was not possible to determine any of the above information from the IDP questions and the actions arising were not clear. It is my view that the use of the “four question” IDP review format is flawed and serves to distract from discussing important issues in relation to progress and provision. I would recommend that the process for conducting an IDP review is reconsidered. It is not fit for purpose and allows professionals to escape scrutiny and accountability for outcomes.
26. The IDP content must be closely prescribed by legislation and must be evidenced by the assessment reports of suitably qualified professionals. Parents should retain their current rights of appeal at each stage, and additionally be allowed to appeal if a school or LA refuses to amend an IDP.
Multi-agency collaboration
27. While based on good intentions, there are multiple issues arising from the measures for health boards in the legislation, which appear not to have been considered. Firstly, it is unclear who is responsible for provision, if the health board does not have a current service to meet the needs identified. It is not clear in the event of a disagreement between the health board and LA, how issues would be resolved e.g. it appears that any complaint by parents about therapy provision would need to be made via the Health Board while also lodging an appeal to SENTW. At the moment, LAs would be responsible for securing provision directly from independent professionals if a health board can’t provide it, which should be maintained for IDPs to ensure a simple “one stop shop” process of appeal for parents.
28. While the assumption seems to have been made that multi-agency working benefits CYP and parents, there is an alternative view. There is great potential for confusion around responsibility for provision in specific cases. For example, case law has established that speech and language therapy is an educational provision, if it is required to access education. Therefore, there is no doubt in the current system that LAs are responsible for statemented provision. It is not clear in the Bill if the LA, health board or both would be responsible for SLT provision in an IDP in future. The Bill should retain the clarity of keeping the LA primarily responsible legally for delivering the provision in the IDP.
29. Data protection will continue to be a significant issue. No information about CYP or their parents should be changing hands without their knowledge and they should at least be asked to give consent on each occasion when it does: “nothing about us without us” is the principle that needs to be upheld. It would also be good to see plans to make full disclosure of information held about parents/CYP to parents/CYP common practice, so that parents/CYP do not have to resort to subject access requests (which attract a fee) to see their own files and data, as they do currently.
Addressing fundamental conflicts of interest in assessment and provision for SEN
30. There are significant issues that have been barely considered with respect to how agencies work together now and in assuming that this bill will result in better collaboration. In 2006, the House of Commons Select Committee recommended that: “The landscape of local authorities and local health organisations is continually changing which makes it difficult to make specific individual recommendations about the way they should work together. We consider, however, that assessment of SEN should not be made directly by the bodies that fund the provision, and any revision of the system overall should take this principle on board. (Paragraph 161)” (recommendation 37). [6] In my view, the CYPE Committee should be considering in full the recommendations made in this report, which seem comprehensive and relevant to defining a better system of assessment and provision for ALN in future.
31. The principle of separating the assessment of SEN from processes of funding and resources in LAs and Health bodies has been recommended many times before by those representing the rights of parents and disabled children in SEN issues. This is absolutely crucial in ensuring that assessments are accurate and sufficiently detailed to reflect needs and the provision required. At present, there is a perverse incentive to downplay support required and to fit CYP to whatever service is available, rather than carefully assessing and documenting what each person requires and making provision to meet those needs. The potential for appropriate and timely SEN provision to reduce the lifetime costs of each individual’s need for educational, health and social care support should also be considered in these decision processes.
32. A solution would be to remove the assessment role entirely from LAs, the NHS and schools and give the role to independent experts. This would also have the advantage of ensuring a degree of standardisation in assessment of needs. It would also provide the whole ALN system with a body of independent professionals who could inform the processes more generally.
Disagreement resolution
33. In determining appropriate frameworks for resolving disagreement, it appears that the Welsh Government has not attempted first to find out why it is that parents find themselves in disagreement with their LA, schools and often NHS professionals (acting for the LA rather than in a neutral capacity) regarding assessment and planned provision for SEN. These issues are very well documented across numerous sources over a very long time period. The metaphor of “fighting” is often used by parents to describe the process of dealing with LAs, schools and the NHS to secure SEN support[7]. Parents’ views, when documented by researchers over time, remain remarkably consistent in the problems they have identified in the SEN system[8]. The attitudes of professionals involved in provision of services within SEN processes has also been shown to present a barrier to working effectively with parents in the interests of their children[9]. Large scale cultural changes will be required for such professionals to view parents as full partners in decision-making, bringing their own expertise to the process (derived from their own lived experiences of managing their child’s condition). To imagine that this will happen without support is wholly unrealistic and regulation is needed to ensure that best practice is adhered to at all levels, bringing accountability into a system where the vast majority of the actors have traditionally acted with impunity.
34. A particular issue from the perspective of parents concerns the current lack of transparency in current SEN decision processes in LAs and health boards, which contributes to creating the conditions for disagreements to occur and mitigates against resolution. For example, it is common for the needs of CYP to be considered by LA SEN Panels of unknown membership, where decisions are made regarding SEN provision and placements. The Panel meetings are held in camera and minutes are not generally made available. Michael Charles, legal expert and CEO at Sinclairslaw has recently called for complete transparency in these SEN processes. He states in commentary on one LA that has opened the process to public scrutiny: “I truly believe that the time has come for absolute transparency. By adopting this method less people will wish to burden the courts or tribunal with claims that could have been avoided. Mediation services will be less strained and more resources will be available to actually provide for our children. I welcome this local authority approach as a refreshing change in protocol. It is important that other sensible local authorities follow the lead. It is far better to properly pay regard, at the outset to the voices of parents, who not only know their child the best but who can relay the truth about all of their child’s needs. Better to allow parents to hear the deliberations than to seek to bury them under a bureaucratic procedure leading to costly legal proceedings in which the truth is likely to ultimately prevail.”[10] I think that the Welsh Government should ensure that these principles of absolute transparency, candour and meaningful involvement of parents in decision processes are enshrined in ALN legislation, in the interests of minimising the potential for disagreement from the outset and reducing the need for mediation and legal action.
35. It is also concerning that “disagreement resolution” is being mooted as a way to reduce reliance on tribunals, without fundamentally addressing the problems that lead to disputes arising. It is a leap of faith to imagine that a more formal process for mediation will have a different result without the widespread cultural changes I have described. Disagreement resolution may be effective in a set of very limited circumstances: the ALN system has an appointed regulator to ensure that best practice is enforced throughout (e.g. by enlarging the role of SENTW); the LA has no role in funding or appointing independent advocates or mediators, to ensure their independence and that they are funded at an appropriate level, since organisations funded by LAs may be compromised in their ability to support parents/CYP and reluctant to undertake true advocacy e.g. representing them against the LA at mediation and Tribunal; independent advocates or mediators are very highly trained specialists in disagreement resolution, legislative requirements and in the technical detail of SEN provision; independent mediators are appointed on the basis that they are seeking consensus and a fair outcome for all parties, particularly ensuring equality of opportunity to put a case forward e.g. all parties have access to the same information; independent advocates are very clear that their role is to support parents/CYP in mediation, including fighting their corner as necessary and helping them to construct legal arguments/ detailed cases to defend children’s educational rights; a mediation process should run in parallel with an appeal process leading to Tribunal i.e. it is not a substitute for the appeal process; if the LA and parents’ positions are already so entrenched that no compromise is possible (which will always be a common position), there should be a means of refusing mediation on the basis that there is no opportunity for formal agreement; should the mediation process fail or be incomplete in any way, the independent advocate will continue to support the parents/child in constructing their case for the Tribunal, including appearing as an advocate for the parents/CYP if this is necessary.
Implementation and enforcement of statements: lessons learned for IDPs
36. A particular problem that arises for parents after statements have been issued at present is enforcing the provision in the statement, i.e. ensuring that support is delivered as set out in the statement. This is particularly the case if statements are poorly and ambiguously worded, allowing LAs to effectively fail to deliver the required provision. Any plans, therefore, to allow “flexibility” to LAs or schools in defining provision I would regard as a retrograde step. It also follows that the content of IDPs must be prescribed by statute and should be written unambiguously, so that there can be no doubt on reading it what support needs to be delivered (as required by case law).
37. As an example where “flexibility” can compromise making adequate provision to meet identified needs, one can consider the spurious argument made by some professionals that full time 1:1 support (e.g. teaching assistant, ABA therapist, etc.) provided by someone who knows the person with complex needs well and is well-trained in supporting their individual needs jeopardises their independence. To achieve true independence, CYP need to have gained proficiency in a range of adaptive and social skills. Until they have, they may need to be taught these skills on a 1:1 basis by someone who understands their needs and this provision will need to be specified and quantified in a Statement or IDP to ensure that it is delivered. CYP with complex SEN will also generally be far behind their typically developing peers in terms of skill development and do not have time to waste in unproductive activity. Providing 1:1 support with someone they know and trust in these circumstances allows CYP to focus on purposive activities and minimises barriers to learning such as self-stimulating behaviour or acute anxiety. To allow the “flexibility” to remove reliable, well-trained 1:1 support from a child or young person where these skills are not established sets them up to fail, with consequences for their mental health as well as skills development.
38. Parents should not be charged alone with ensuring that the actors in the ALN system remain accountable, as happens now. At present, LAs can rest easy, knowing that parents can only bring tribunal appeals in a number of very restricted circumstances and that otherwise, the only available remedy is bringing a Judicial Review. Neither process brings swift resolution and leads to delays in addressing urgent problems with provision. Since the tests for legal aid are so stringent, Judicial Review is actually not an option at all in most circumstances anyway, often leaving parents with no available remedy.
39. To change this situation, the whole system should be regulated by an overseeing body to ensure legislative compliance and to define best practice, backed by the legal powers to enforce this. For example, I would suggest extending the remit of the SENTW, so that it is given relevant new powers to ensure best practice in the ALN system beyond appeals relating to IDPs. For example, the SENTW could hear complaints regarding non-delivery of provision in IDPs, having powers to investigate and to make orders requiring that the IDP is delivered in full. From experience, such disputes can take years to resolve, requiring simultaneous legal/procedural actions. The lack of accountability and transparency causes procedural problems and delays in resolution. The CYP involved will also never get back the time wasted where they could have been making progress.
Case friends
40. In most circumstances, it is difficult to understand why CYP with complex SEN would be encouraged to bring cases without the support of their own parents. There are serious questions to be asked regarding the ability of parents to discharge their own responsibilities to ensure that their children receive a suitable education in the situation where a case friend is supporting their child. It is wrong to side line parents in this way from the process of determining what educational provision is in the best interests of their child. It is a situation that would never be tolerated in the case of typically developing children, so one has to wonder why it is deemed especially important for CYP with SEN to determine their own provision.
41. This is a dangerous and easily manipulated situation. Responses from any child are malleable, depending on how questions are asked of them. For CYP with learning disabilities, there are also issues around comprehension that would need very careful consideration. It is difficult to believe that a case friend, no matter how well meaning, would be a better judge of how best to support a child to genuinely express their opinions than a parent. Once the “case friends” are not actually independent persons, but are actually teachers or others school staff, local authority employees or others involved in resource decisions, it is difficult to see how these proposals have any legitimacy. The role and function of case friends requires scrutiny, to ensure that the existing rights of parents and CYP are not jeopardised.
Concluding remarks
42. I sincerely hope that the Committee will consider how the proposed ALN system should operate to provide the support required by all CYP with SEN, particularly those with complex needs. As drafted, it is not clear that the Bill will even serve to maintain support at the current level for CYP with complex SEN, let alone fulfilling the promise of “statements or something better”. I remain very concerned about the future for my child if this Bill is not significantly amended before being brought into force.
[1] http://senedd.assembly.wales/documents/s59912/CYPE5-07-17%20Paper%205%20The%20Special%20Educational%20Needs%20Tribunal%20for%20Wales.pdf
[2] Draft Additional Learning Needs and Education Tribunal (Wales) Bill: Draft Explanatory Memorandum, p10.
[3] Personal communication (dated 16 December 2016) from Rhiannon Davies, ALN Transformation Manager, confirmed that the ALN Special Interest Group is “a joint working group between Welsh local authority education departments and the Welsh Government, with representation from local health boards, the Association of Directors of Social Services and the further education sector, with a remit to help identify and agree strategic operational approaches that can be adopted nationally. The ALN-SIG is chaired by Gareth Morgans, Chief Education Officer, Carmarthenshire County Council.”
[4] See for example RUNSWICK-COLE, K and HODGE, N (2009). Needs or rights? A challenge to the discourse of special education. British Journal of Special Education, 36 (4), 198-203.
[5] That a good proportion of teachers in a recent poll appear to think that they are qualified to do so only serves to underline the potential problems. A YouGov poll found that 57% of teachers thought that SEN was misdiagnosed and that 54% thought that parental pressure leads to unnecessary SEN categorisation. This has been roundly condemned by thought leaders in SEN provision for perpetuating harmful stereotypes of “sharp elbowed” parents and led others to question the basis on which teachers are qualified to question medical diagnoses. See https://www.gl-assessment.co.uk/media/2190/gl1670_hooked-on-labels-not-on-need_february-2017_final.pdf
[6] Select Committee on Education and Skills. Third Report : Special Educational Needs, HC 471 (2006). https://www.publications.parliament.uk/pa/cm200506/cmselect/cmeduski/478/47802.htm
[7] E.g. see Duncan, N (2003) Awkward Customers? Parents and Provision for Special Educational Needs, Disability & Society, 18:3, 341-356.
[8] See Chris Gravell’s summary article for Network 81 in 2000 here http://www.zen123082.zen.co.uk/Articles/tribunal.htm. More recently, two further research reports into disagreement resolution via the tribunal process and mediation were conducted by Merton branch of Mencap in 2013 (see http://www.mertonmencap.org.uk/pdfs/SEND-Tribunal-Survey-Results-August2013.pdf) and SOS!SEN in 2014 (http://www.sossen.org.uk/information_sheets/SOS!SENResearchReport18Feb14.pdf). All documents were last accessed 14 December 2015 and it is remarkable that similar issues arise in all publications.
[9] Bezdek, J, Summers JA, and Turnbull A (2010). Professionals’ Attitudes on Partnering with Families of Children and Youth with Disabilities, Education and Training in Autism and Developmental Disabilities, 45(3), 356–365.
[10] See commentary on the benefits of greater transparency in LA SEN Panel decisions here: http://www.sinclairslaw.co.uk/news/panel-decisions-should-not-be-behind-closed-doors/