You can’t have failed to notice that, here in the UK, we’re hurtling towards the snap general election called for next month.
The political parties have been sallying forth with their respective election manifestos with policies ranging from good, to bad to downright ugly. But, I hear parent carers cry, what about SEND?
SEND isn't a sexy, vote-grabbing policy unless you're involved in it. And as we are, we decided to crowd-source some ideas for a parent-led SEND manifesto.
I asked our SNJ Columnists and our readers on Facebook for their input and today bring you the Parents' SNJ SEND Manifesto. At the end, I’ve embedded the original Facebook post and you can comment with your own ideas there or in the comment section for this post.
You came up with some great ideas and a few pretty hard-line ones too....Some are already law... but you wouldn't know it... So here we go...
Accountability
Many of the comments on Facebook were for things that are already on the statute books but have failed to make much of an impact. They include things such as listening to parental concerns about their child, sticking to legal time limits for EHCPs, and needs-led services.
But mainly, it seems the most important thing parents want is accountability for schools and local authorities in the standard of SEND provision and people working with disabled children.
Of course, there is already an accountability system with Ofsted and CQC and some LAs have already had their “collar felt” in the shape of being required to make urgent improvements after less than adequate inspections.
However, the inspections are not able to drill down to the school-by-school ‘coal-face’ level, they do not happen even yearly and improvements are certainly not likely to be immediate. And of course, the longer they take, the more children with disabilities do not get the support they need and deserve.
Other parents suggested compulsory reporting on SEN in a school’s annual Governors’ report.
Parent: - Take the responsibility to assess SEND needs and prescribe SEND provision out of LA hands, and place it in the hands of an independent body accountable to SENDIST. There is a glaring, decades-old conflict of interest here that lies at the heart of most problems with SEND. LAs cannot be trusted to objectively assess need when they are the ones who have to meet need. Also, recruit parents who know the law to serve on local area SEND inspection teams.
So, accountability then. The number one manifesto requirement from parents is that whoever takes up residence at No 10 must ensure that schools, local authorities and health services do what they are supposed to under the law. And then they must monitor and properly enforce. And no, that isn't happening under the Ofsted/CQC system.
- For more on this: Ofsted Local Area SEND Inspectors: The good, the bad & the ugly
- And this: Ofsted/CQC SEND Inspections and parents: More than a feeling?
Compliance
The next big thing is compliance with the law. The current post-reform law is far from perfect but at the very least, parents want a commitment from government to ensure that all local authority SEND policies are fully compliant with the law.
To this end, they want a standard format for provision under SEN Support and the Education, Health and Care Plan across the country that all LAs must use. This makes an EHCP portable should the family move and it makes it easy for different services to understand. For example, if a child has a complex condition and is seen at a major centre such as Great Ormond Street Hospital, then it helps clinicians if they see the same kind of plan so they can tailor services to and from it. If they're getting, as they are now, different formats from many different councils, it makes their job more difficult and time-consuming.
Parent: My suggestion is the policing of statutory duties because, as we know, LAs etc are simply not abiding by them.
It surely cannot be beyond the ability of the Departments for Education and Health to get together with the SEND Tribunal and come up with something sensible? The Tribunal is the most obvious forum to put this together so that it complies with the law. I know that this is something long been hoped for, and now is the time to make representations to your candidates to get it on the radar. Kind of SEND Reform 2.0.
Kerry via Facebook: A truly joined up health, social care and education service to provide efficient pathways through diagnosis, EHCP, family support and specialist provision.
So, a manifesto pledge to ensure everyone who is bound by a legal duty towards children with SEND complies with it. LA policies MUST reflect the law and ONLY the law. And if they want to offer something even more on top, well, that would be nice.
Training
Training was on many parents' minds. While the Carter Review made training recommendations and SEND is to be part of the new Teacher Training curriculum, this is nowhere near enough.
What about all those existing teachers who are not up-to-date with current SEND practice? After all, if every class teacher is a teacher of children with SEND (as according to the SEND Code of Practice) then surely this is a pretty basic requirement? But as I said here, when TAs are being cut, what school has the money for training?
Judith via Facebook: All teachers to receive full autism training and perhaps an award system (Ofsted?) for schools that are autism friendly - can show awareness, understanding, positive inclusion, buddy systems, safe zones, visual timetables etc.
Other ideas from parents in this area are for compulsory Makaton training for all staff at Key Stage 1 and below.
Sue via Facebook: The Law to be obeyed and teachers to be trained in initial teacher training for all SEND especially if they are being trained to teach in SCITT (School Centred Initial Teacher Training) primary schools. Primary schools to be funded so that they can identify early and teach/intervene for all dyslexic/dyscalculic /dyspraxic /dysgraphic children.
So this manifesto request is for urgent training in all aspects of current SEND practice for all teachers, support staff and school leaders, whether they are just about to enter the profession or have been there for many years. This should include SEND-friendly PSHE (Personal, Social and Health Education), bullying and anxiety issues, working with parents and helping children out of school for medical reasons.
- More on this: SEN to be part of new teacher training curriculum
- And here: Good mental health support needs one thing: proper funding
Compulsory ring-fencing for SEND funds
England's reform of special educational needs has had a LOT of money poured into it. But with LAs and schools facing cuts in other areas, the money has too often ended up elsewhere.
Parent: Ringfence SEND budgets in schools, & make schools account for the way they use their SEND budgets in the same way that they already have to for Pupil Premium.
The DfE says it currently can't do this but there is no reason that their political masters cannot, in the words of Captain Picard, "Make it so". Officials have made a stab at getting around the current state of affairs with the latest tranche of SEND funding for facilities, by making LAs tell them what they're going to spend it on, after consulting with families. I don't know if anyone has yet done so.
- See more on this: £215 million cash boost for local areas to improve SEND facilities
- And here: Hands off! SNJ learns new council funding to boost SEND implementation isn’t ring-fenced
Rosalind via Facebook: I'd start with (1) Proper debate about the underlying barriers to equality: the feeling that disabled children are less important than neuro-typical children even before birth (am talking about the pressure put on mothers to end 'problem' pregnancies); (2) an end to mother-blaming as an excuse for inaction; (3)a ban to the phrase 'have your say' about services, which usually means giving parents a biscuit then asking which disguised cut they'd prefer; (4) for goodness sake allow SEN teams proper training and the budget to employ decent staff and keep them in post! (5) proper financial, emotional, social care and therapy support for newly diagnosed children and families, delivered from a single assessment form. (6) ban all use of instant coffee and comic sans; you're welcome.
So a manifesto pledge to ringfence allocated government funds so that they are used as they are intended. Also, LAs must publicly and transparently account for how they have spent it. They must ensure parental participation in this process so it can be monitored. Parent Carer Forums have to account for the money they're given by the DfE, why not LAs?
Post 16
Always the SEND poor relation, those young people with SEND over 16 were brought into England's new system in 2014 but it hasn't gone smoothly with confused local policies, lack of understanding and parents having to fight very hard for placements and funding.
Parents want to be promised that their 16-25 year old disabled sons and daughters are given access to five-day a week placements at least, not three days as many have now - if they have that. It means the difference between parent carers of this age group being forced to give up work if they cannot find suitable care. Suitable often means autism-specific and it always means local to home. Of course this is true for all ages when a child is out of school through exclusion, because of dispute over placement or when a placement breaks down.
Also, the anomaly of young people with SEND who have succeeded in getting to university should have EHCP protections extended to them. There is NO reason why not, especially as apprenticeships are covered and the Disabled Students' Allowance has been cut. There can easily be a stipulation that the protections do not extend to paying uni fees (though these will be abolished under a Labour government). It would not only mean a level playing field for these students, it would prevent them falling through the cracks away from home, dropping out or worse.
- More on this Post 16? It's a postcode lottery
- And here: One family's wild ride in pursuit of Post16 provision
- And here: Disabled Students Allowance cuts: Is it time to extend the EHCP to universities?
So, this manifesto pledge is for government to ensure young people 16-25 who are covered by Education, Health and Care Plans to get the help promised in the SEND reforms and to extend it to university students.
Penalties
One popular idea with parents was penalties and compensation to be paid by schools, LAs and health services for persistent failures. Some parents, who undoubtedly have had very poor experiences, called for fines on services that let down their disabled children, even calling for jail terms.
Bev via Facebook: A direct fine for any child let down that impacts the school and the employee/s and sencos/heads involved and fines if Governors don't respond appropriately etc...Fines to be not only monetary but like points on a driving licence and you lose your licence if you get x quota of points...
Definitely a compensation and costs penalty to LAs for any inadequacies paid to the child and parents... Especially if EHCP related...
I'm not sure how this would work, but certainly, service failure costs families dearly monetarily, career-wise and most of all in their health and wellbeing. Doesn't this trail of devastation they are left with deserve compensating? Would hitting service providers in their pockets and - maybe - even their liberty - impress upon them that they are dealing with people's lives?
Joanne via Facebook: Introduce real penalties for those who do not meet laws regarding EHCP . The 20-week rule for an example is just words on paper. If the professionals involved don't meet the 20 weeks nothing happens and very few SN parents can afford to take it to court.
So this manifesto pledge would look at ways to penalise services for persistent failures and to pay compensation to families who have been mistreated and have lost earnings, opportunities or suffered extreme stress because of it. This isn't an easy one, but the NHS is forced to pay up for mistakes, so no reason why it cannot be done in some form.
What did our columnists say?
As I mentioned, the question was also put to our columnists, all experts in their areas. This is what some of them said.
Zoe Thompson: Amalgamated tribunal so that Education, Health and Care can be appealed together. For children with developmental delay of any kind - a social communication programme in the school setting as well as in the home. The NICE guidelines (CG170) recommend that commissioners consider a social communication programme for children with autism - to work on the core difficulties at the heart of autism. There is also recent research that backs this up. And here is a piece on it in the Guardian (ignore the sensationalist 'super-parenting' headline)
Our colleagues at Genetic Alliance UK and their SWAN UK initiative said:
Our policy/SWAN team would suggest a commitment along the lines of "Neither assessments nor access to assessment for support should rely on a diagnostic label. This is to reflect the reality that having no unifying diagnosis can still be a barrier to getting access to support for SEND."
They also have a “Pledge for Patients” they’d like you to sign up to.
Hayley Goleniowska: Fully qualified, well paid 1-2-1 SEN assistants for children in school, real SEND training for teachers and the freedom to teach in a pupil-centred way, differentiating work to the learning style and level.
A shift in thinking away from the idea that families are to be kept in the dark, kept ignorant and that we are all problem families. The thinking that our children are a problem, a burden, a cost. A move towards real communication with families and treating them as lead professionals.
Improved access and representations in all areas of life, more disabled actors, models, teachers, presenters and an increase in accessible toilets/transport/buildings etc to enable everyone to access life more easily. Until we see SEND everywhere society can never see difference as a ‘normal’ part of life.
Marguerite Haye: I would like the manifesto to comply with human rights. Stop using the medical model of disability; I would prefer to use the rights-based model. The rights-based model is focused on empowerment, and disabled people set the agenda, which challenges segregated education.
- SEN Support is a completely broken system: it's failing because there's no control over funding, the notional SEND Budget is a myth, schools are not protecting SENCO posts, there is wide spread abuse of the duties set out in the Code.
- It worries me hugely that the DfE published advice on 19-25 SEND in February without any consultation and which seems to water down the provisions in the Act. I fear they will continue to undermine that part of the Act in the new Parliament, in small steps, until in reality the provision is only made from 19-21. It's shocking.
- Martin Vickers MP was led to believe that, although his Private Members' Bill on autism and school admissions failed, there would be some new measures in guidance to promote fairer admission policies for children with autism. What did we get? Minor changes to the Exclusion guidance - not admission, but exclusion! That's what they think of autism and education - they're going to get excluded so what can we do to tidy up the exclusion journey? Disgusting.
So, over to you. Anything to add? Don't be shy...
Here's the Facebook post I promised embedded below, but if it isn't showing up for you, the link to it is here.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
- WEBINAR RECORDING: Will the SEND Improvement Plan fix provision for disabled children and young people? - March 16, 2023
- Can you legislate for love? The Government’s plans for children’s social care aims to - February 3, 2023
- Don’t make it harder to get EHCPs warns Equality and Human Rights Commission as DfE considers “raising the bar” - January 26, 2023
I think sticking to deadlines is very important. LAs don’t care about breaking the law because there are no penalties unless you follow the complaints procedures. And parents really a good lawyer for certain situations so it cannot be fair that you have to spend vast sums just getting the LA to be lawful. Maybe parents should be able to claim their costs back afterwards, or get no means tested legal aid as it is for the child’s benefit. And the quality of the EHCPs by the LAs are shockingly bad even when the evidence for severe and complex needs are there. All SEND officers and SENCOs must be fully trained in writing EHCPs that are truly representative of a child’s needs. They deliberately omit crucial information that is right under their noses. I think a national standard template for EHCPs should be implemented so there is consistency to help end the postcode lottery. No bonuses or any kind of financial incentive for refusing to assess etc. Every child must be fully assessed – it cannot be right that a child with severe learning difficulties and autism never gets a SALT assessment. And transparency is also crucial as their is a huge breakdown of trust in the system when parents feel ignored and colluded against just for trying to get their child the help they need.
ALLFIE is delighted that both the Green Party and Labour Party’s Manifestoes includes explicit mention of full commitment to developing an inclusive education system that includes all disabled pupils in line with the UNCRPD Article 24. We encourage all the other political parties to support the development of an inclusive education system as the Lib Dems and Conservative Government has ratified the UNCRPD including Article 24.
ALLFIE has published a #GE2017 briefing asking all Perspective Parliamentary Candidates to pledge their support for ALLFIE’s two very big ASKS:
• Full implementation of disabled pupils’ and students’ human right to mainstream education under UNCRPD Article 24 and the Children and Families Act.
• Full funding of a universal inclusive education system that will include the support disabled pupils and students need to flourish in mainstream education.
Please see our campaigns briefing http://www.allfie.org.uk/pages/work/GE2017.html that includes a range of activities you can get involved in to raise the profile of disabled pupils and students civil and human rights to inclusive education. If you secure 2 PPC’s support for ALLFIE’s ASKs then you are in a chance to win a fab ALLFIE prize.
Contact Simone Aspis for more information.
It’s worth considering though that inclusive education may not be appropriate for all children with SEN as some have violent and challenging behaviour as well which means that they cannot be safely managed at home. This has often been caused by being in the wrong education setting. Some children with signficant ASD and complex needs need access to a waking day curriculum in a residential autism school with onsite ed psych, SALT, OT and behaviour modification. One size does not fit all with SEN. And bear in mind that local authorities will use what you are proposing to cut access to this type of education for those with ASD and complex needs without offering support or respite to their families.
Thanks for this as I am not on Facebook. The only comments I would like to add are:
(1) A SEND system should exist where it should not be necessary for parents or Young People to have to exercise a legal right of appeal through the SEND Tribunal in the first place, More emphasis needs to be given to why professionals misunderstand their duty of care towards a CYP and the requirement to produce objective assessment reports which make clear recommendations in terms of provision.
(2) Far greater scrutiny of LA appeals to the Upper Tribunal is necessary, particularly for the post 16 group. I believe LA’s have hidden agendas and are taking advantage of the idea that, arguably, new SEND case law is necessary. IMO one of the real objectives of LA’s is to get the SENIST decision order ‘stayed’ irrespective of the true cost to the CYP so that provision does not have to be made whilst the appeal to the UT (which can take several months) is pending.
(3) I would like LA’s to become responsible for reimbursing the legal costs personally incurred by parents and YP if LA appeals to the Upper Tribunal are unsuccessful. The disparity of access to the public purse is unacceptable. It needs to be recognised that Legal Aid is not available to everyone and even when eligible for legal aid, people may have to pay a significant personal contribution. It is essential that this point is acknowledged. After all, If outcomes for YP really do underpin SEND legislation, then YP should not be financially out of pocket when defending LA appeals especially when the appeals are dismissed because the only error of law is by the LA, not by the SEND Tribunal.
Thanks for this as I am not on Facebook. The only comments I would like to add are:
(1) A SEND system should exist where it should not be necessary for parents or Young People to have to exercise a legal right of appeal through the SEND Tribunal in the first place, More emphasis needs to be given to why professionals misunderstand their duty of care towards a CYP and the requirement to produce objective assessment (of need) reports which make clear recommendations in terms of provision and meaningful outcomes. Professional bodies (HCPC, NCTL etc) need to be more proactive and hold professionals to account. These organisations are currently part of the problem not the solution. It should be an automatic part of an individuals ongoing CPD and continued professional registration that all reports that form part of evidence submitted to the SEND Tribunal are separately scrutinised by people running these organisations, and constructive feedback given to the professionals concerned to provide challenge and promote good practice.
(2) Far greater scrutiny of LA appeals to the Upper Tribunal is necessary, particularly for the post 16 group. I believe LA’s have hidden agendas and are taking advantage of the idea that, arguably, new SEND case law is necessary. IMO one of the real objectives of LA’s is to get the SENDIST decision order ‘stayed’ irrespective of the true cost to the CYP so that provision does not have to be made whilst the appeal to the UT (which can take several months) is pending. The true cost to CYP of such delays can be devastating and opportunities to improve their life chances are being missed.
(3) I would like LA’s to become responsible for reimbursing the legal costs personally incurred by parents and YP if LA appeals to the Upper Tribunal are unsuccessful. The disparity of access to the public purse is unacceptable. It needs to be recognised that Legal Aid is not available to everyone and even when eligible for legal aid, people (including YP with SEND) may have to pay a significant personal contribution. It is essential that this point is acknowledged. After all, If outcomes for YP really do underpin SEND legislation, then YP should not be financially out of pocket when defending LA appeals especially when the appeals are dismissed by the Upper Tribunal Judge because the only error of law has been made by the LA, not by the SEND Tribunal.
Thanks for this as I am not on Facebook. The only comments I would like to add are:
(1) A SEND system should exist where it should not be necessary for parents or Young People to have to exercise a legal right of appeal through the SEND Tribunal in the first place, More emphasis needs to be given to why professionals misunderstand their duty of care towards a CYP and the requirement to produce objective assessment (of need) reports which make clear recommendations in terms of provision and meaningful outcomes. Professional bodies (HCPC, NCTL etc) need to be more proactive and hold professionals to account. These organisations are currently part of the problem not the solution. It should be an automatic part of an individuals ongoing CPD and continued professional registration that all reports that form part of evidence submitted to the SEND Tribunal are separately scrutinised by people running these organisations, and constructive feedback given to the professionals concerned to provide challenge and promote good practice.
(2) Far greater scrutiny of LA appeals to the Upper Tribunal is necessary, particularly for the post 16 group. I believe LA’s have hidden agendas and are taking advantage of the idea that, arguably, new SEND case law is necessary. IMO one of the real objectives of LA’s is to get the SENDIST decision order ‘stayed’ irrespective of the true cost to the CYP so that provision does not have to be made whilst the appeal to the UT (which can take several months) is pending. The true cost to CYP of such delays can be devastating and opportunities to improve their life chances are being missed.
(3) I would like LA’s to become responsible for reimbursing the legal costs personally incurred by parents and YP if LA appeals to the Upper Tribunal are unsuccessful. The disparity of access to the public purse is unacceptable. It needs to be recognised that Legal Aid is not available to everyone and even when eligible for legal aid, people (including YP with SEND) may have to pay a significant personal contribution. It is essential that this point is acknowledged. After all, If outcomes for YP really do underpin SEND legislation, then YP should not be financially out of pocket when defending LA appeals especially when the appeals are dismissed by the Upper Tribunal Judge because the only error of law has been made by the LA, not by the SEND Tribunal.
I’d like to see some joined up thinking…
Obtaining a Speech & language therapy report, or OT report for the EHCP, requires you to get to the top of the waiting list. In my experience, this takes many months longer than the 20 week timescale that the EHCP is required to occur within (if you ever get there at all). So the process needs to be longer to accommodate this aspect, otherwise EHCP reports written within the timescale are likely to be missing vital information.
I’d like the reports from such agencies to have absolute regard for the format of the EHCP paperwork – so if the EHCP demands to know the expected outcome of provision by the end of the following key stage, i.e. Period between end of key stage 2 and end of Key stage 3 = 5 years, this information must be included in the report, rather than stating expected outcome at the end of a 6 month period (for example).
I’d also like there to be a consensus on the format of the EHCP paperwork, and the reports submitted by professionals in relation to expectations in terms of what the report should encompass; with no holds barred on identifying provision – clearly and using the language required in order to be presented on the EHCP with meaning. For example, an Educational Psychologist should not be allowed to use phrases such as ‘would benefit from’ ‘ideally’ ‘perhaps’ ‘could consider’ ‘might like to’ because when it comes to writing the EHCP, such use of wording doesn’t equate to provision.
I’d also like to see an end to parents having to spend money in order to get the necessary reports to identify need and provision because it seems increasingly that this is the only available option. We are rapidly seeing the arrival of a two tier provision for children with additional needs; those whose parents/guardians spend money obtaining reports (and battling through the tribunal system with additional lawyers fees) to get the placement their child requires, and those who don’t/can’t and consequently don’t even get the needs of their child identified in order to stand any hope of getting the placement that their child needs.