SEND Forum - Report to MPs - final 230118

SPECIAL EDUCATIONAL NEEDS FORUM REPORT

The impact of the implementation of the SEND and Education Reforms on users of the system a report following the meeting between parents and MPs on 1 December 2017

“Being a strong advocate for your child does not make you a ‘difficult parent’" Nigel Thompson, Head of Inspections – Children’s Health and Justice CQC speaking at NNPCF Conference 28/11/17

The Issues National Context 1. Crisis in funding for SEN (High Needs Block) – massive funding gap. a. Rising pupil numbers. E.g. 21% jump in number of children requiring a place in a special school predicted in 2025 over 2015. (DfE figures quoted in TES) This equates to 18000 new special school places nationally. A similar % increase in mainstream SEN pupils is to be anticipated – and the complexity of the SEN is increasing. b. Legislation extended EHCPs to cover 19-25 age group with no additional funding.

2. Free school programme is hampering the ability of Local Authorities to build appropriate local provision because all new schools have to be approved centrally 3. The national schools funding formula is unfavourable to the boroughs of Richmond and Kingston because of the measures that it uses (does not reflect the actual number of children with SEN) l meaning that the two boroughs receive approx.. £5,000 less per child for each EHCP than the outer London average. (figures provided by AfC – see end of report)

Local impact •

High Needs Block overspend across Kingston and Richmond >£11million by end of 2017/18 financial year (AfC budget figures – see end of report)

•

Money from the Schools Funding block being allocated to the High Needs Block to try to reduce this overspend in Richmond and Kingston – meaning that mainstream pupils are having funding cut to subsidise SEN pupils. Kingston council want permission from DfE to extend this policy this year. Potential to be highly divisive.

•

Richmond applied to build 2 new free schools earlier in 2017 (Auriga trust). One was rejected.

Where are those school places to come from if LA can’t build new schools? Private provision does not always offer good value for money and yet ends up being the only option. Without suitable local provision families are forced to fight for out of borough schools – with all the additional expense that entails (School fees and transport)

How can Local Authorities do the right thing by SEN children and meet their statutory obligations when there is insufficient money to fund it? Decisions are increasingly driven by budget and not by need – which is unlawful How can the Local Authority meet the increased demand and complexity from SEN children and young people, when they are unable to plan and build schools in the local area that meet need?

How do Kingston and Richmond council plan to manage the budget deficit in SEN spending? The AfC SEN improvement plan looks unlikely to deliver the necessary millions in savings by next year. Does this is fact mean there must be significant cuts to the provision for local children?

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The Issues Local issues 1. Poor administration of the EHCP process, leading to very long delays, poor quality plans and inappropriate provision for children. Breaches of statutory duty.

2. Evidence of Local Authority refusing to conduct needs assessments or setting unlawful hurdles (such as requiring EP reports). According to Department for Education figures there was a 35% increase between 2015 and 2016 in the number of local authority refusals to carry out EHC needs assessments on children. (quoted in Guardian article 5/9/17) 3. Evidence of watering down of provision or overriding advice from key professionals (or commissioning additional “statutory” reports) to override recommendations from professionals in many cases, leading to poor quality plans and inadequate provision 4. Almost total absence of social care plans included in EHCPs – even for children with significant social care needs.

5. AfC have committed to transferring 900 Statements to EHCPs in 5 months (between November 2017 and end of March 2018) to meet the DfE deadline. This will mean finalizing 10 transfers per day every day until the deadline. a. In the previous 38 months, since the start of new system approx. 800 statements have been transferred. We are concerned that the pressure on numbers is having a severe impact on quality b. as a comparison, between April 2016 and March 2017 the SEN team issued 150 new EHCPs (64 for Richmond and 96 for Kingston) 6. High number of appeals to SEN tribunal. 89% of appeals that go to tribunal are won by parents (figures from Special Needs Jungle included later in this report). There are also multiple examples of AfC pushing the parent to tribunal and then settling days before the court hearing.

Who is holding AfC to account?

Parents seem to have no recourse other than tribunal – which is both expensive and traumatic.

7. Compelling evidence that schools are struggling to provide support to SEN pupils because of lack of resources (and sometimes training) – leading to a greater number of children being excluded, placements breaking down or failing to find an appropriate school.

How can schools better meet the needs of children with SEN? How can we ensure that the right type of schools exist to meet the need?

The alternative is increasing levels of school breakdown and exclusion and needing to use expensive out of borough independent schools. Devastating for the child and bad for the budget.

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Actions We plan to try to improve the situation through the following:

National Situation 1. Request that the MPs write to the Secretary of State for Education regarding the issue of funding shortfall and the lack of ability to build new schools to meet demand 2. Local Parent groups to write to Secretary of State for Education regarding the issue of funding and lack of appropriate local provision 3. Local Parent Group to contact the London representatives of the National Network of Parent Carer Forums (NNPCF) to request that the Forums in the other boroughs also energise their council and MPs around this issue (we suspect many of them already are)

Local Situation 4. MPs and local parents groups to ask the Councils (Richmond and Kingston) for a detailed statement on plans / actions that will be taken to manage the £11m shortfall in SEN high needs spending projected by the end of next year. Will this is fact mean that educational provision to support children with SEN will be cut? How will this be done? Is this possible within the Local Authority’s legal obligations?

5. Hold a meeting between AfC leadership, parent reps, MP and / or councilors to discuss and agree short term changes in policy, practice, communication and information that will alleviate some of the worst issues, in particular areas of practice that are in breach of statutory duty or where the situation is clearly detrimental to the child. Agree a detailed action plan.

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Evidence This section contains evidence based on submissions to Ruils and SEND Family Voices from parents in preparation for the SEND Forum meeting and also from the SEND Family Voices issues tracking log.

The SEND Family Voices Issues log is compiled from contacts that the charity has with parents, carers and sometimes SENCOs and other professionals. They are contacted via: •

their website (there is a web form people can complete)

•

via email (a generic email address)

•

Through open meetings that they regularly run

•

Via a telephone (manned by members of the steering group)

Via presence at other meetings - e.g. organised by other voluntary sector organisations or at schools Their principle aim is to provide support, information and signposting to families and, where possible, help. However they also log each individual case so that they maintain an overview of what the community is contacting them about as feedback to decision makers and service providers.

•

Each case is categorised by area and identified as an issue (problem) or whether simply a comment or request Each issue / question / comment / request is logged only once (even though there may be multiple contacts through email or phone with the family).

Summary of Issue Log Data: Since November 2015, when SEND Family Voices started logging cases there have been

Category

number percentage

total cases (issues / questions / comments / requests) logged

1245

of those cases number that were issues (problems)

730

59% are problems

total cases logged relating to EHCPs

330

27% of total cases

of EHCP cases number that were issues (problems)

242

33% of total problems

total cases logged relating to school inclusions, school choice, reasonable adjustments or school support for SEN

156

12.5% of cases (upward trend)

of school related cases number that were issues

112

15% of total problems (upward trend)

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Evidence 1. Poor administration of the EHCP process, leading to very long delays, poor quality plans and inappropriate provision for children. Breaches of statutory duty.

Extract of some of the cases logged in the issue log relating to this: No.

Date

Contact how?

Details

436

12/1/17

email to SFV

Parent complaining because child has been in transfer process for around 8 months and nothing has happened. Child needs an EP assessment, probably a referral to a psychologist, sensory integration therapy. Case worker appears to be off long term sick.

Parent is not called back and is not getting and follow up from team - seems to have been forgotten. Meanwhile child is not getting provision needed

16/01/17

web form

Parent complaining that she has had 3 case officers since August and none of them have done anything.

26/06/16

call to SFV,

Parent called with query about EHCP process - is far in excess of statutory time limit (30+ weeks so far) and was concerned that LA could remove the child's support since plan not finalised. Reassured her this not the case

295

04/05/16

email to SFV SG member

EHCP Process started July 2015 and still not finalised. Multiple changes of case officer. No one returning calls or emails or acknowledging family feedback

775

03/11/17 09/11/17 17/11/17 17/11/17

transfers workshop email to SFV

Parents have been contacted by an assistant EP rather than a Case Officer regarding their transfer to an EHCP. Complaints that they don't seem well trained and seemed to be working to a script. doing case officer work or are they doing EP work. Confusion and poor impression of level of understanding of the process given to the parents

770

03/11/17 09/11/17 17/11/17

transfers workshop

Parents stating that although the letter stated that the case officer would call them - no call had in fact taken place. Some of them called their case officer anyway but several have not yet made contact with the case officer

782

17/11/17

transfers workshop

Parents saying that paperwork and reports that they or the school have submitted have got lost in the SEN team

771

31/10/17

email to SG Member

Parent being told on the transfer call by case officer that they have 3 weeks to submit their report as the clock starts ticking from the date of the letter (not true for parents - and 6 week deadline shouldn't apply to parents). Also case workers are requesting professional reports before speaking to the parents - causing confusion as the school or professional then potentially contacts the parent before the case worker has explained what is going on.

This also prevents the parent from telling the case worker if reports have already been written that are satisfactory - which would save requesting additional advice

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No.

Date

Contact how?

Details

755

09/10/17

email to SFV SG member

Parent of a young person at college received a call from the college to say that they had still not received the funding from AfC. Finally SFVG SG member managed to contact college on behalf of the parent and the funding has now been paid. It seems that the case worker had changed without knowledge of the parent (and maybe the ball was dropped)

526

02/02/17

web form

Parent looking for escalation path as says has been "messed about so much" on EHCP and can't seem to get things moving.

Presumably transferring from statement to EHCP - but does not explicitly state

474

20/11/16

reply paid card

Parent has an EHCP for child - transitioning from mainstream infant to special school junior. Found process appalling. 5 changes of case officer. Wrong information given by case officers regarding schools to consider. Paperwork not sent to out of borough schools requested. Parent had to repeatedly chase over a period of 10 months. Paperwork arrived just before deadline at schools which are already over-subscribed.

Social care and health aspects of EHCP have been dismissed despite the fact that the child sees several specialists for a variety of difficulties

415

20/09/16

email to SFV

Parent complaining about the handling of child's transfer from statement to EHCP. Complaining in particular about a "garbled and unlawful" letter received recently. Transfer Initiated in early December 2015. Has been dropped. Parent now has legal support.

SEN team have not responded to the direct questions raised in lawyers letter. Parent very angry and upset - believe child is now at a significant disadvantage as is not getting support she needs due to delays (therapy in particular)

404

24/08/16

email to SFV

Parent complaining that case worker has left without handing case over to anyone, despite assurances that he would call before going and do a proper handover. The process has been far from smooth so far so the family are less than delighted that they will have to find out who their new case worker is and then go through it all again

387

20/07/16

response to SFV request for input on ISCD

Parent waiting over a year for EHCP to be returned. Chasing case officer very frustrating as she is always out of the office. Transfer review took place June 2015. No EHCP yet

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Case Studies From a parent whose EHCP process is stalled after 21 months…

The changeover from Statements to EHCPs appears to have come unstuck from underfunding of human resources. This has led to the continual extension of deadlines, passing of responsibilities between Education, Health and Social Care, and an unacceptable turnover of staff as overwork and stress has driven them out of the job and therefore not only workers but seniors lack knowledge and experience. The Government needs to provide additional funds for the additional support necessary in extending the qualifying age from 19 to 25.

A KNOCK DOWN, DRAG OUT FIGHT We wish that politicians would understand that the fight that parents have to go through to get their children’s needs understood and provided for is far, far worse than the realities of raising our disabled children A KNOCK DOWN, DRAG OUT FIGHT - The costs in terms of time spent trying to get responses, disdain and unpleasantness experienced from those who are specifically tasked to support our children’s needs and us, ignorance, dishonesty, unkindness, lack of empathy, being fobbed off, and all the emotions raised in the process, just to get our children’s needs understood and adequately provided for - is far, far worse than the realities of raising our disabled

children which include THE REALITIES OF RAISING OUR DISABLED CHILDREN • • • • • • • • • • • • •

Relentless anxiety about their safety, both in the home and out Dealing with limited communication skills that lead to severe frustration, behavioural outbursts, damage and destruction to possessions and property Actual physical harm to parents, siblings and self harm to the disabled child Sleepless nights for many years 24/7 parental cover for many parents Challenging and violent behaviour from children who are not receiving adequate support Extreme emotional vulnerabilities of parents and children Behavioural challenges that necessitate 24/7 surveillance by overstretched parents Negative financial impact of one or more parents being unable to work in order to provide care for child and or to access provision Divorce rate of north of 80% for families with a severely disabled child Mental health problems experienced by siblings The reality of almost complete isolation within our communities because without adequate support we and our families are hostages to our children’s disabilities Life in a parallel universe which pushes families, siblings and the disabled child to the brink.

Every single day.

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The advice of people who know the child well is being disregarded…

Inexperienced, poorly trained and unqualified case workers are responsible for a process that is delicate, emotive and stressful for families. The educational future of the very individuals they are meant to be supporting is threatened by mistakes and confusion that seem to dog every part of the EHCP process. If a child does not have a vocal and assertive advocate then they are massively disadvantaged. The problems stem from not enough funding. Case workers are massively over worked, there is not enough money so there are fewer professionals available to visit schools, and the sheer volume of work is off the scale. A local SENCO reports receiving emails from case workers after 11pm.

Our experience illustrates this.

Our EHCP journey for our severely hearing impaired child starts well with a meeting attended by all the key professionals involved. Needs, suggested outcomes and provision are all discussed.

Because it takes so long for professional reports to be written after this meeting, and for a needs assessment to be agreed, it takes 8 months for the LA to confirm that they will proceed.

It takes a further 2 months for a draft EHCP to be created by a case officer who is not involved in the first meeting and has never met the child and when the SENCO and parents see the draft just before the review meeting the provision that was so carefully worked through at the initial meeting has been drastically altered. And there is missing input from a key professional – the case officer claims never to have received it even though it was sent twice.

The first meeting to review the draft is attended by three case workers, parent, SENCO and teacher. But 2 key professionals are unable to attend – which since the vital report is still “missing” means the meeting has to be rescheduled.

At this meeting the shocked SENCO asks why there was no correlation between the document that she submitted and what was in the draft. The case worker replies “I thought that it came from the parents so I disregarded it”. The meeting ends. The case worker admits that they have “made a mistake”.

At the follow up meeting a trainee case worker chairs the meeting and produces the same EHCP that was brought to the first meeting and is reluctant to integrate the changes that the professionals and parent ask for. She responds with “it’s statutory” when asked to delete inappropriate provisions. The document also mistakes the child’s gender and needs.

In July AfC issue a final plan. The provision is illogical and the funding is allocated in a way that will not meet the needs of the child or the provision in the Plan. The case worker refuses to change this and blames the school for not providing a good provision map.

September (roughly a year after the start of the process) - the hours are still unclear and completely unsatisfactory – the school recruits an LSA based on their own understanding of the hours needed to support the child and meet the provision agreed in the EHCP.

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Documentation is extremely poor and sections are incomplete or missing…

Process •

The overall process is inconsistent and deliberately opaque. For example: o

we received an initial “no” for Oliver without OT and SLT advice being sought

o

we registered for mediation knowing the decision is incorrect

o

we provided updated documents (which I'll come to next) to panel who agreed to then do OT and SLT

o

no one can now tell us what the process timeline should be (including the group managing mediation)

•

The inconsistency and lack of trust mean we need to seek advice from external organisations to understand timelines

•

It also drags out the process and means we have no confidence in receiving an appropriate placement for our son’s secondary school in time. o

It has become an unnecessarily stressful process with a significant time, financial and emotional drain when we are already depleted

Documentation •

Documents about our children are what's used to understand their need and give a picture of them and their need to people in decision making positions

•

The quality of documentation is extremely poor and sections are incomplete or missing o

We had no OT or SLT commissioned for Oliver despite the school, ourselves, and EP saying it was necessary

o

The documents used vague and unspecific language "Oliver will receive advice and support from language professionals as deemed appropriate"

o

They used responsibility passing phrases "Oliver will have use of strategies and support from Occupational Therapy for sensory and motor issues if deemed appropriate by the service"

o

And finally they did not reflect the original submission or statements from a subsequent review meeting and minutes

•

Those incomplete and hazy documents have meant we need to endlessly re-tell our story and re-highlight all of Oliver's shortcomings (but none of his achievements) which is emotionally draining and impacts our psyche

•

Similarly Oliver has had to endure repeated work at school and home to gather and prepare new reports and documents because they are poor which creates even more anxiety for him

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Evidence 2. Evidence of Local Authority refusing to conduct needs assessments or setting unlawful hurdles (such as requiring EP reports) Extract of some of the cases logged in the issue log relating to this: No.

Date

Contact how?

Details

756

03/09/17

email to SFV

Parent very angry at what perceives as "systemic failings "and managing a budget rather than providing a service to our children.

Had a 2 year battle to convince AfC to assess for need as they repeatedly said school was meeting need - where parent is clear the school was not (and they child now has an EHCP - so that must be the case) .Had to threaten high court action to get AfC to issue a version of the draft EHCP and then, despite comments and corrections being made the previous version was issued as "final". Also there was no attempt to put any meaningful social care assessment into the plan.

Parent firmly believes that this is all a tick box exercise to meet statutory deadlines and has nothing to do with producing a good quality plan for the child.

671

10/05/17

web form

Parent of a child with HFA / Anxiety who would like to see more support for child - and medical pathway have suggested that an EHCP may be appropriate- but has been told by the school that LSA only provided when EHCP in place - and not seeming to want to assess at the moment. Parent confused as to what she needs to do to ensure that the child is properly assessed and supported

556

21/02/17

call to SFV

Parent of a reception child who submitted a needs assessment request personally as school did not support and has been rejected and very upset. Also was told by SEN team that a MAM meeting would happen but this was cancelled and parent does not know why.

Wanted to know what can do next. Advised that can write to request notes on panel decision and also that can ask why MAM meeting did not go ahead. Grateful to have another parent to talk to

339

14/06/16

email to SFV

Young person with a statement turned down for transfer to an EHCP

by LA. Looking for advice as parents strongly believes that the YP needs support post 16

431

08/10/16

email to SFV

Email thread copied to SFV detailing an email from the SEN team EHCP coordinator rejecting a request for a needs assessment - based on the fact that professional reports were submitted (i.e. as based on school based evidence) and that it was just before the summer holidays. the person forwarding the email suggested that this has been in more than one case and suggests that the SEN team are not following the code of practice and using the 6 weeks to investigate the request for a needs assessment

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Case Studies

The LA sacrificed any chance of early intervention to save money Sam was 2.5 when I realised his speech wasn’t developing like other kids his age. By the age of 3 he’d had Speech and Language assessments and begun group therapy. It wasn’t until he was 4 that he was referred to Occupational Therapy and within 6 months ‘Autism’ was first mentioned.

But due to limited capacity it would take a year for a full diagnostic assessment. An EHCP was suggested, but both LA and school said no, through false pretences and ignorance respectively as I later discovered. Sam by this time was 5 and a half.

Then his therapies were stopped because he didn’t have an EHCP. His behaviour deteriorated dramatically. He regressed alarmingly. The school applied for an EHCP. It was refused. After many requests for clarification the LA said their refusal was on procedural grounds. The wrong forms had been used. Not a single mention of my boy’s needs.

Sam is now 6. So I spend my savings on private weekly therapies at £85 per hour and a private diagnostic assessment at £800. Sam finally gets an NHS Diagnostic assessment after an 18 month wait which corroborates the private diagnosis.

We have now lost a further 6 months and have 5 new sets of reports at great expense An assessment is now agreed. Sams EHCP is finally signed off by the LA but without direct therapies despite repeated verbal and written requests by me and written recommendations by his private OT and SLT. Our views didn’t even reach the SEN panel that signed off the plan because our SEN case officer didn’t attend the panel meeting.

I request mediation hoping that we can discuss adding therapies which I am funding at a cost of £4,800 per year. Despite being in contravention to SEND Regulations - the LA refuse mediation.

I register for tribunal which takes me 4 solid days to prepare the paperwork. The LA immediately engage lawyers - this is their normal procedure.

I raise a category 2 complaint to the Local Authority for failure to attend mediation. The LA calls, apologises, and offers a personal budget for the full amount of the private therapies but forgets to tell their lawyers who go ahead and prepare all their tribunal documents at further expense.

That was in March 2017. Sam was 6.5. The LA sacrificed any chance of early intervention to

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Anecdotally “no’s” are given to every submission whatever the need…

•

•

•

Money is extremely tight, yet the approach is wasteful o

86% of appeals are lost which shows the LA strategy is wrong.

o

Money then gets wasted on legal fees and time of staff which should go to children

Anecdotally “no's” are given to every submission no matter the need o

So the hope that is a number of parents will go away

o

We received a no for our son Oliver without a full needs assessment even being done, the LA not commissioning OT and SLT reports

So ultimately cost is pushed down to parents to obtain legal advice and miss days from work for meetings and all trust is gone o

The LA should instead be making the need transparent upwards to government

Services are unable to deal with dyslexia / sensory problems…

•

I would like to say it’s easier for the mental health service to put children on medications for stress or have them admitted to psychiatric hospitals and sent to ASD assessments than suggest they have dyslexia/ sensory problems.

•

They don’t know what dyslexia is any more as it’s been surpassed by autism in terms of funding and public awareness campaigning.

• •

Would he get better service from CAMHS if he said he wanted to be a girl?

CAMHS and schools don’t like dealing with each other over stress and dyslexia

•

Symptoms of what is anxiety/ loss of concentration and dyslexia largely unknown but could be significant in positive outcomes for children at school whose stress problems appear to be in the classroom.

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Evidence 3. Evidence of watering down of provision or overriding advice from key professionals (or commissioning additional “statutory� reports) to override recommendations from professionals in many cases, leading to poor quality plans and inadequate provision Extract of some of the cases logged in the issue log relating to this:

No.

Date

Contact how?

Details

741

05/10/17

email to SFV

Parent complaining that the draft EHCP has been "watered down" from what is written in the reports and is wholly inadequate. Child at an OOB special school. Hears from the school that other boroughs (Lambeth / Hounslow) manage to send Case Officer to constructive meeting and produces sensible draft where AfC seems to be incapable of this

777

03/11/17

transfers workshop

Parent stating the quality of the content of the EHCP was very garbled and didn't really make sense. It was a cut and paste from a number of reports and lacked any kind of "golden thread"

779

17/11/17

transfers workshop

Parent stating that the EHCP plan has been issued - with the wrong school - even though she has never seen a draft. The process seems to have got completely messed up as there have been a number of changes in case officers and information doesn't seem to have been passed on. Parent is wondering what to do as the EHCP issued is clearly incorrect

622

08/03/17

email to SFV

Parent asking for advice about a new EHCP. Hours support have been reduced - less than that requested by family and school - and also therapies are specifying a package of visits per term rather than tailored support. Parent wants to know whether can appeal both these things at tribunal or whether for the therapy package it is necessary to take a different route

634

11/04/17

call to SFV

AfC want to sign off EHCP but parent says there has not been enough professional input for EHCP to be meaningful.

706

26/06/17

call to SFV

Parent seeking advice about transfer of statement to EHCP. Not happy with the way that provision is being specified. Looking for support / information

223

05/02/16

conversation with SG member (2nd hand)

Report of a parent whose child, despite having a statement, does not receive the support she needs in nursery as council have refused to provide the resources, despite the statement. Claim to have lost the paperwork

244

20/02/16

email to SFV

Parent asking for help with writing outcomes for the EHCP. Case worker telling parent they need to have outcomes but did not provide help on how this could be done. Also looking for help with understanding what a social care plan should look like

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No.

Date

Contact how?

Details

265

18/03/16

email to SFV

Parent has been allocated less support time in the draft EHCP than she, the SENCO and the Ed Psych feels are necessary. Looking for support to resolve this

330

10/06/16

web form

Parent wishing to appeal the provision in the EHCP - considers it completely inadequate.

395

22/07/16

response to SFV request for input on ISCD

A 'disastrous" time with AfC in terms of them addressing the child's educational needs. Areas of concern include falsification and inaccurate writing of the EHCP. A serious breach of data protection in that the EHCP was posted to the wrong address (had not lived there for 6 years). Plan is still not finalised and no attempt from SEN department has been made to do so. SEN team failed to recognise that child had health as well as educational needs. Parent feels patronised by AfC. Parent states "I have absolutely no faith in this department at all..."

408

12/09/16

email to SFV

Parent was looking into alternative placements for child. Found one that looked promising. When EHCP was sent saw that the LA had named a local special school. There had been no consultation or communication with the family about this before the document was received. Family do not feel that the named school is appropriate for their child. Want child to remain in current placement until they find something that they and the LA can agree on.

428

04/10/16

call to SFV

Parent calling to complain about the way that their (post 16) young person's EHCP has been handled. Not fit for purpose and getting no support from SEN team - team says they are understaffed - which is why the problems are occurring. Both hospital and college are supportive of parent - very unhappy with the SEN team

463

16/11/16

email to SFV

Parent saying that rather than have AfC outsource the writing of the EHCP the parent help. Parent believes that the 5 hours allowed is not nearly enough and that a key problem is that the quality of the professional's reports is often woeful and vague - making it impossible to create a good quality EHCP

594

11/04/17

call to SFV

Parent looking for someone to support during interim EHCP review (probably assessment summary review). AfC is putting on pressure to sign off draft - but parent says that professional reports do not have enough detail.

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Case Studies An inadequate report will be crucial in determining the support my child receives.

Example of how AfC seem to be gathering advice about my child.

A week or so ago I was out shopping and got a call out of the blue from an Educational Psychologist from AfC. They said they needed to have a brief chat with me – 5 minutes. I wasn’t really happy about it and said “you’ve put me on the spot” – can we do this another time? The EP said that she needed to submit a report by tomorrow so it was important that we talk. In the end the call was half an hour. During the call I did discuss my concerns and then at the end we summarised together what she'd put in the report. I was still not happy and asked that we speak the next day.

I called back the next day once I’d had a chance to collect my thoughts and reflect a little. I couldn’t get through so left a message - but she never called back.

I have just received a copy of the report – and it makes no mention of the key issues that I was at pains to communicate to the EP. So the report doesn’t take into account my views, it was as far as I can tell based on a conversation with me while I was out shopping. The EP has never met my child. And now has submitted an inadequate report that will be crucial in determining the support my child receives. This is not just unprofessional – surely it is also negligent in respect of assessing the needs of my child.

The AFC staff member alluded to the fact that LA specifically do not want ABA or 1:1 in the report I am waiting on a transfer from statement to the current EHCP. The reports thus far are from school, the school OT, school SLT, parental comments and representing the LA in terms of the report that has been forwarded is the EP input. Despite clear and recurring evidence from school, SLT & OT and also the LA’s own EP there is still no mention in the report of ABA or VB. In my and others’ review meetings, statements were made which were akin to blanket bans on ABA or 1:1.

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The transfer process is indeed being used unlawfully by AfC as a means of stripping out previously agreed provision Our Case We are Kingston residents (of 20 years). Our son attends an OOB specialist ABA provision for children with Autism (and has for 9 years).

Our Key Point Code of Practise states, that NO child/YP should lose their current support through the transfer process because the system has changed.

This transfer process is meant to be an administrative transfer of legal contracts from one format (the Statement) to another format (the EHCP) and so should not be used to change provision without following the proper procedure in law.

BUT instead, we have experienced exactly that, this Transfer process IS indeed being used unlawfully by AfC as a means of stripping out previously agreed provision from our Statement, to issue a generic diluted draft EHCP that no longer reflects our son, his needs, nor his current provision.

AfC are doing this by simply ignoring the contents of his current Statement, and selectively and heavily editing school and professional reports, completely out of context and without any new evidence provided that his needs have changed.

AfC are abusing this process and UNLAWFULLY rewriting provision to fit their own purposes and satisfy their own agenda, which is, to fit provision around budgets, and not evidence.

(We also now know that we are not alone, since AfC are issuing these generic and diluted Draft EHCPs as wide spread tactic) More worryingly it appears there is an active blanket agenda from within AfC, as in our case, to remove all specific provision references to any 1:1 support and for all ABA provision to be deleted out of Kingston and Richmond EHCPs. Our fear is that AfC will now finalise and issue an EHCP that is not fit for purpose as it will not be an accurate picture of our son, forcing us to go to Tribunal, to fight for his rights and protect the provision he is already receiving which meet his needs and as is specified within his Statement.

We are not asking for anything else.

Our Question(s) How is AfC is allowed to act with such impunity, unlawfully, without scrutiny and without retribution for NOT following the agreed process in law?

Who IS AfC accountable to for its unlawful practices?

How can it be justified for AfC to spend over ÂŁ1m in administrative costs throughout this whole transfer process so as to deliver EHCPs that have been unlawfully stripped out of legally protected provision, as a cost saving exercise.

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It is so emotionally draining knowing I am going to have to go into battle with the LA in order to secure a place that meets the needs that I know she has but that the LA refuse to identify on her EHCP …. Firstly, timing issues. It has taken in excess of 2 years to transfer from statement to plan. I initially requested that the plan be transferred in April 2015. During this time I have dealt with 8 different co-ordinators. I have had at least 6 drafts issued. On reflection, knowing what I do now I should have appealed a long time ago but naively held faith that we could get a workable plan.

The form used has changed so many times during this process it has made a hard job even more difficult. The layout of the plan used by AFC is poor as it appears to match provision to outcomes rather than needs. I understand that Richmond have been pulled up previously at panel but this has not been amended.

Section B in my daughters plan is crucial as in order to inform provision in F it is vital that needs are clearly identified. Obviously this is not in AFC’s interests so it has been a battle! It is so important in this section to get a clear identification of needs and severity – simply stating a child has a diagnosis of dyslexia is not good enough. Her diagnosis is clearly written in the EP report but has not been reflected in the plan. The EP report was outsourced to First Steps Psychology – why? At what cost? The report is a reasonably good assessment but the provision element is practically non-existent. Her plan indicated that she has severe literacy difficulties, significant communication difficulties in terms of expressive and receptive language and experiences emotional difficulties. Without quantifying these how can provision be determined? Both the EP report and the psychotherapists report evidenced these problems but the evidence was not used in section B. Preparing for Adulthood has been a joke. No-one even started to look at this until the middle of 2017 – far later than the guidelines state. The headings now used by the borough, Further education, Independence, Community etc. further add to the confusion in section B. Splitting this section into strengths and needs further adds to the confusion. I would expect to see clear detail in this section relating to cognitive ability, attainment levels, communication skills, emotional needs and anxieties based on evidence derived from standardised assessments and observation by professionals – however trying to get the borough to gather this information is incredibly difficult.

Sections C, D, G and H state ‘none identified’ Why not? Reports should have been requested surely. My daughter has a social worker and a psychotherapist working with her.

Initially all seemed positive with my request to look at a particular school then a couple of weeks ago I was told by my current caseworker that his supervisors had stated that there would be no further placements at this school from the borough due to costs – how can this possibly be the case when the needs assessment has yet to be done??? .I now believe that my daughter’s primary need is SLT. The borough currently gives her 6, yes 6 sessions a year. This is totally budget not needs driven. Without a proper needs assessment I don’t feel I can move forward so I am now having her assessed privately.

It is so emotionally draining knowing I am going to have to go into battle with the LA in order to secure a place that meets the needs that I know she has but that the LA refuse to identify on her EHCP.

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Evidence 4. Almost total absence of social care plans included in EHCPs – even for children with significant social care needs.

Extract of some of the cases logged in the issue log relating to this: No.

Date

Contact how?

Details

797

07/11/17

email copied to SFV

Complaint to AfC regarding the refusal of AfC Social Care to assess her child as part of the EHCP transfer social care assessment. Parent believes that AfC are acting unlawfully

791

03/11/17

email to SFV

Parent requested a social care assessment via the SPA for her child.

Timing wise is linked to the EHCP transfer - but child needs the assessment anyway. SPA told her that the child didn't need one (having phoned the EHCP coordinator for some reason) - even though it has nothing to do with the EHCP coordinator. Finally persevered with the "Education and Early Help" person in the SPA and they have agreed to go ahead with the assessment

147

14/09/15

email to SFV

Parent forwarded correspondence from SEN case officer who was being extremely inflexible and pushing to meet deadline even though no social work input was in the plan (despite there being a named social worker) and Case officer had not attended meetings

Case Study Care part still blank despite the fact my son goes to a specialist residential school and will need care all his life I’m 3.5 years in to this process and still not at the end. I’ve put in official complaints about it and they have been upheld. But still not got me to the end of the process.

I’ve been through about 10 people. The care part still blank despite the fact my son goes to a specialist residential school and will need care all his life.

SEN person at AfC started out well but hasn’t updated the document since April - how can he remember what was discussed since then?

Follow up Just had my ECHP meeting. All changes made in April were lost, as written on paper and SEN worker 'isn't good with paper'. No apology.

Trying to go through this process - SEN worker has now had to go back to manager as saying 'its really difficult', 'my son is very complex', 'isn't sure how to get all this information in there' Social care team have used their part to link to the local offer. No words and no interest (even though they pay 1/3rd of the fees) I have advised already I will never sign it off with such a woeful contribution to a document that will need to be valid for 12 years.

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Evidence 6. High number of appeals to SEN tribunal. Richmond has the 2 nd highest rate of SEN Tribunal registrations in the country.

There are also multiple examples of AfC pushing the parent to tribunal and then settling days before the court hearing No issue log cases logged specifically about this as normally the family has legal representation at this stage and doesn’t come to SEND Family Voices for support.

Case Study

…the amount of money spent on reports and legal fees exceeds £30,000 and the stress cannot be measured.

I am a parent of a 21 year old and a 17 year old with SEN. Both of tem had statements of SEN and my 17 year old currently has an EHCP. I have had to fight every step of the way to get them the help they were entitled to.

The Local Authority has done nothing to make the process any easier. I have had three appeals – one went to a hearing and two were conceded a week before.

Over the years the amount of money spent on reports and legal fees exceeds £30,000 and the stress cannot be measured. I am legally trained but still struggled to work out how the SEN process works and more frustratingly found that time after time the local authority failed to follow the law.

For the past 10 years I have volunteered with SOSSEN! A charity helping parents and carers of children with SEN. The new system is supposed to help make things easier for parents and children but the attitude of the Local Authority has not changed. Things have become harder for parents and children. Parents are often fobbed off and not informed of what is available to help their children so unless they learn how things work and threaten local authorities they do not get the support and provision their children are entitled to.

Unless local authorities are made to follow the law and are required to be more accountable it is hard to see how anything will change.

In addition teachers need training on SEN matters and also the independence to speak about what help a child can get. Local authorities have too much power over their own schools and school staff will not speak up for a child for fear of what the local authority will say. I am happy to speak to the MPs about my experiences.

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Figures from Special Needs Jungle published 18/12/2017

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Evidence 7. Compelling evidence that schools are struggling to provide support to SEN pupils because of lack of resources (and sometimes training) – leading to a greater number of children being excluded, placements breaking down or failing to find an appropriate school.

Extract of some of the cases logged in the issue log relating to this: No. 767 789

Date 19/09/17 29/09/17

Contact how?

Details

call to SFV

Parent of a child diagnosed with dyslexia concerned that the child is not receiving support from the school and looking for advice

email to SFV

Parent of a child in mainstream with HF ASD looking for a secondary school. Tearing her hair out as doesn't know where to go / where to look

813

03/11/17

call to SFV

Parent of a child who needs OT / Physio equipment in school and school is saying they have no funding so is asking the parent to fund it. Wanted to know whether this is appropriate and also if she were to do so whether this would set a precedent for more expensive pieces of equipment

786

21/09/17

email to SFV

Parent of a child at primary with ASD diagnosis in mainstream concerned that the school is going to suggest that they can no longer meet the child's needs (there has been an incident of the child hitting the LSA during a meltdown). Parent asking for advice on where to look for alternative provision, on what to do and how to move forward

805

07/09/17

email to SFV

Parent asking for advice with finding a new school for a secondary age pupil with ADHD as current school says it is no longer able to meet the needs. Parent worried that AfC will propose an unsuitable school. In the view of the parent AFC and the child's school have both behaved really badly and have totally failed the child, although the child is on an EHCP (got one eventually, the school insisted that one was needed!). Parent suspects there is a bit of a pattern of SEN kids being excluded in year 10 so they don't impact on year 11 grades

686

24/06/17

conversation with SG member

Parent of a child at mainstream secondary. Child gone from A/B grades to failing. EP diagnosed dyslexia, anxiety and a range of other things. Parent requested meeting with SENCO to discuss provision - nothing for 10 months. Then went to head. Had a meeting within a week (involving SENCo also). For the week after the meeting lots of extra provision put in place and since then nothing

705

11/06/17

call to SFV

Child in mainstream secondary - on CAMHS waiting list awaiting full diagnosis. Not happy with the level of support in the school complicated and tangled situation. Looking for some support and advice from SFV

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No.

Date

Contact how?

Details

672

15/05/17

call to SFV

followed by email. Parent concerned that child's needs not being properly assessed by the school. Waiting for diagnosis but doesn't feel school is meeting needs appropriately

610

22/03/17

email to SFV

Parent looking for support with finding a suitable school for a primary child with complex learning difficulties. The schools that they were recommended to contact all say that they are full - parent doesn't know where to go

565

01/03/17

email to SFV in copy

Very long email from a parent following a meeting with Kingston councillor attended by SFV. Told story of terrible experience of secondary transfer for her child, with 1 mainstream refusing entry, 1 accepting but only after pressure (records were lost) and then after 1 term insisting that the school was wrong and a managed move would be forced. There was never a proper secondary transfer meeting and the whole process managed very badly and left the child a long way behind. Is now at a specialist school, which is working for now - but is probably insufficiently academic to meet the needs

684

25/02/17

email to SFV

Parent of a child at a Kingston primary writing for support as feels the school is trying to "silence them" rather than deal with issues that have been raised. A number of parents met a member of the Council to discuss it and this seems to have rattled the school. Need advice on how to handle from here. One aspect of the issue is that the SENCo seems to be too busy to deal with important administrative matters (referral)

555

23/02/17

web form

Parent contacted us as has a child with learning difficulties but school doesn't seem to want to support so wants to know what to do

483

17/10/16

Call to SFV

Parent of a young person with recently diagnosed Aspergers called looking for support and advice. YP has been bullied at school (school apparently don't care) and parent is now home schooling child - but can't really do it as parent will lose their job. Child is having meltdowns and parent is struggling. Only schooling child currently receiving is music class on Sundays.

448

10/10/16

call to SFV

Parent of a child with ADHD who since moving to juniors has no support - school doesn't provide any support - says child needs an EHCP - but parent doesn't know how to go about getting one - also doesn't know that the school should be providing support under the SEN support policy. Child is "just running around"

363

18/07/16

face to face with SG member

Parent very concerned that school are actively trying to get her child to end the (split) placement at the school. Have had several difficult meetings over the years -SENCO has been very hostile.

352

04/07/16

web form

Child at secondary school with a range of issues, including undiagnosed ADHD (waiting since Jan 2015! for diagnosis) Child has been excluded from school for much of the year. EHCP process started but Ed Psych & School report didn't arrive and LA closed the file with no EHCP. School now keen to permanently exclude the child. Parent not sure what to do. Have resubmitted paperwork for EHCP. ACADEMY

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Case Studies Sadly the education system is stretched to the limits and it maybe that staff involved were overloaded or possibly didn’t have the knowledge...

Our son had been diagnosed with anxiety, rather than ADHD at primary school, but with cognitive behavioural therapy did well in primary.

In secondary things started to deteriorate. We regularly requested meetings with tutors and phase leaders at school and started to have concerns about his friendship group and his behaviour at home.

After a parents evening, our son was very low, his grades had slipped and we were disappointed. The following day we could see and smell that he had smoked cannabis – which was very shocking for us as he was just 13. The school offered a drugs counsellor after we reported this but despite discussing other support and programmes with the school they were not actioned.

We couldn’t access any timely mental health support through CAHMS because of their waiting list – so got a referral to a psychologist through our private insurance.

We did think about looking at a new school but our son was so fragile at the time, we felt he needed his friends as part of his support network.

He continued to struggle, despite his behaviour being monitored using the SIMS behaviour system and involvement of us as parents and many staff in the school. None of the interventions seemed to help him to address and rectify his behaviour and during this time he had 2 exclusions for risky behaviour.

Sadly it would appear the constant punishment just further eroded his self esteem.

We worked with the school to remove our son from harm, taking him to and from school and ensuring he could not smoke cannabis. Sadly on the Friday before half term, our son decided to try alcohol to get him through the morning at school as we had now removed his cannabis crutch. When my husband received the phone call that our son was drunk at school we were devastated, we had let him down by not removing all dangers. He was excluded for a week as the school has a zero tolerance policy of alcohol consumption.

We met the psychiatrist who confirmed a diagnosis of ADHD and depression and suggested medication. He found that our son did have suicidal thoughts as he could not control his mind or behaviour and hence the need to self medicate, the alcohol incident he considers a cry for help. Sadly as parents and the school, it seems we did not recognise what we were dealing with, we took the wrong approaches with him.

Following this incident it was made evident that it would be difficult for our son to return to his school and alternatives were suggested. At this point we recognised our son would struggle to thrive in mainstream school and so we have relocated out of the London area to be able to educate our son privately. A year on he is doing really well and focused on achieving good GCSE’s and going on to study maths, economics and politics at A level We did say to the teaching team we still believe they are a good school with caring teachers and many examples of good practice. Sadly the education system is stretched to the limits and it maybe that staff involved were overloaded or possibly didn’t have the knowledge to recognise ADHD.

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Seeing my son at 6ft completely lost and having to rely on me again My son is now a young adult.

Since year 1 at school he was seen as disruptive, uncooperative etc etc. By year 3 I was regularly in the classroom discussing his behaviour. I took him along to football (even though he preferred other sports) and many other activities on advice of his class teacher– which he stuck at for a while but eventually left after abuse from other parents and being made to feel useless as a player. During primary he also participated in a social skills group which although hard for him to stay calm and focused he managed to be calm and cooperative.

During primary school years he was taught strategies to overcome stress/anxiety but when he went to secondary he was told these were not allowed and reverted back to disruptive/giving up behaviour.

Abuse by staff and pupils at secondary school was extremely stressful for both of us.

Many forms were completed to help with his care were then ignored. Numerous calls from mobile on route to school and through day did nothing to improve my confidence in the school’s care of him.

He was excluded from doing his final DofE assessment, despite having practiced all year as returning from a funeral he was not at his best and was told he couldn’t go.

Staff intervention during choice of college course was unhelpful and extremely confusing .

Before he went to college we had a lengthy meeting with the SEN dept and were assured all his needs would be met. We discussed at length with tutor specific targets, reassurance and the total backing needed during transition.

After several weeks nothing had been put in place for him. No English GCSE class?

Termly meetings were held with staff at which I was told his course work wasn’t being completed and was given a lengthy list of catch up work to do with him. Previously I had been told not to intervene (he’d has some tutoring) as they would give him after school lessons. I could/would not start arguments with my son again after years of peace at home.

By December he was completely stressed again and I had to take him to college to complete a Controlled Assessment.

Soul destroying for both of us after all the work we had put in. Seeing my son at 6ft completely lost and having to rely on me again. Left vulnerable to teenage life he went completely the wrong way. Managed to pass course but not able to continue in Public Services.

He is now coping well in employment.

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My recent experience with Kingston LA has been good Disabled children are without doubt the single most vulnerable group in our society. They are forced to live under this label because nature, accident or disease has robbed them of one or more of their senses, the use of their limbs or their cognitive function. Frequently children have all of these things to contend with, including the loss of their dignity. Many are also living in the shadow of a limited life expectancy. Yet despite this the parents and carers of these children seem to have to spend months, often years of their lives fighting for the most basic of things when it comes to healthcare and education. Inadequate government funding seems to be at the very heart of the problem. There are simply not the resources available to support parents, carers, schools and healthcare professionals who work with our children.

Even with her disability my daughter often seems like one of the luckier children. She is healthy, active and generally happy. She has siblings not affected by disability who support her and a large family that cherish and adore her. The staff and many pupils at her school have shown her immeasurable kindness and have been incredibly patient when met with the many challenges that crop up when trying to teach and guide her through the school system. Over the years my personal experience when dealing with Kingston LA has been positive and we are currently liaising with them whilst my daughter transitions from a statement to an EHCP. Hopefully I will still feel this way at the end of the process when the transition is complete and my daughter is happily settled in her future school.

Many people are not so lucky. They have more than one disabled child, they may be alone with those children, often having suffered a relationship breakdown which is understandably common considering the herculean pressures that the situation can bring. Many are also trying to look after elderly relatives at the same time, as no one else can, and are often struggling with their own physical and mental health problems. There are way too many people trying to cope with all of this whilst living below the poverty line. In addition they now find themselves embroiled in a system that seems as though at best it has been designed to further exhaust them and at worst torment them. Whilst the idea of combining education and health in one document is a good one, without adequate funding, how did anyone in government ever expect a project of this magnitude, and with this level of complexity, to progress quickly and efficiently.

As I said before, my recent experience with Kingston LA has been good and there is no evidence to suggest that the outcome for my daughter will not be positive. However as my understanding is that they have hundreds and hundreds of Statements to transfer to EHCPs and are attempting to do so with just a handful of staff in a limited time period, I fear that the system is at risk of complete meltdown if funds aren't urgently made available for this and of course it will be the children who ultimately suffer. Resources are stretched to such an extent that funds allocated for mainstream children who are not affected by disability are being diverted and so ultimately every child's education is being jeopardised.

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Even with an EHCP at 16+ it is very difficult This is a young person who has an illness and consequently missed a lot of schooling – and also has severe anxiety. Even having an EHCP hasn’t enabled her to get the support she needs: Having an EHCP has made no difference to my child – apart from 2 hours of tutoring that I was able to secure as I was able to talk to the person at AfC who makes the decisions.

The EHCP has made no difference to the support she’s been given at college. Last year she attended x college but was asked to leave for poor attendance. I attended various meetings and requested extra help – but none was forthcoming. There were no funds available via the college and AfC said nothing available as she was at college. A no-win.

Despite wanting to do geography A level she is now doing an Art foundation course at a local college - and is a huge struggle for her. No 6th form would give her a place as she didn’t have the requisite 5 GCSEs even though “reasonable adjustments “ should be made – she has 4 including Maths and English.

The major point is that even with an EHCP at 16+ it is very difficult.

I have had to fight for everything and the toll on our emotional health is enormous.

The allocated hours support are being shared with other students Unfortunately, the EHCP does not seem to work as the schools are really very tight on budgets. The allocated hours for a particular child are being shared with other students also. As a result of this, the student with the EHCP is not getting the attention that he/she deserves.

Consequently, parents are having to spend large sums of money on private tutors. Personally, I spend in excess of £400.00 per month in Year 9 and this is likely to rise in the crucial GCSE years.

Whilst it is theoretically possible to apply, and gain, personal funding, why is this not practically possible and why are there so many obstacles put in the way of the parents in order to avail of this facility?

They are failing to provide our children to be in education, either in a school or home schooling We moved to the Kingston Borough on 1st July 2017. At the beginning of September we had a meeting with the caseworker of our twin boys, 9 years old both diagnosed with ASD. We had 4 preferred schools. On a second meeting in October we found none of the 4 schools would offer our boys a space. The caseworker named 6 other schools she would forward our boys papers to. At this point (end November) we still don’t have a school for our children. I have contacted our caseworker by both phone and email but I get no response. We feel the caseworker and the Borough are letting us and our children down. They are failing to provide our children to be in education, either in a school or home schooling.

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Some context on Funding (slides provided by Achieving for Children) The budget that supports children with SEN in Richmond and Kingston is significantly overspent and the situation is getting worse. This is certainly contributing to the poor situation.

Why we are where we are….

Put simply…. the councils and schools are spending more on high needs educa8on than is being funded by Government and this posi8on is ge=ng worse...

Why we are where we are…..

• Why are Kingston and Richmond worse than other boroughs - Richmond and Kingston receive less funding than other boroughs

- Demand has increased at a higher rate than elsewhere in London - General populaAon aged 0 - 25 is increasing at above the average rate - Historic low funding levels have been embedded into the new formula

- Benchmarking shows that Richmond and Kingston’s average costs are not wildly out of sync with similar boroughs and that most schools are inclusive

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AfC have received additional funds from the DfE to support with the implementation of the SEND Reforms (the SEND implementation Grant).

This data shows the spending (and allocation for year 17/18) just on transfers of Statements to EHCPs (i.e. an administrative process) SEND Implentation Grant (DfE) to AfC: Amount spent on EHCP Transfers

FY14/15

165,156

FY15/16

472,811

FY16/17

222,584

FY17/18

Total

ÂŁ 860,551

mid-year 17/18

extra from AfC

340,000

Total overall

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ÂŁ 1,200,551

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