Tag Archives: disability

Disability and education in Suffolk – the costs and hidden costs

The first tranche of Suffolk’s  review of its special educational provision – the consultation  -finished last Sunday. I responded jointly as councillor and as parent as the form allowed.

We were told that the review was  focusing on the following three types of current specialist educational provision:
1) Specialist Support Centres (SSCs) (I am in favour, indeed I would like Suffolk to establish another one in the north west of the county); 2) Residential provision in Moderate Learning Disability (MLD) Special Schools (I felt this  needed  discussion with parents as best placed to define wants) and
Alternative Provision (AP). Alternative Provision was used in the consultation as a catch-all for  ‘any provision that provides education that is not a mainstream school or academy’. It includes all provision for young people with specialist health issues, for example autism, and epilepsy which is  often provided out of county at great expense (and now to age 25 because of recent legislation). AP was also used to include  PRUs (Pupil Referral Units): facilities offering a part time or full time education for pupils who exhibit challenging behaviour. Typically pupils spend 2 terms in a PRU before being reintegrated back into school.

We were told

Currently the county council is experiencing considerable pressures with the number of learners with additional needs (236 currently) needing to be educated in non – Suffolk settings, with learners requiring access to Social, Emotional and Mental Health (SEMH) and Autistic Spectrum Disorder (ASD) provision accounting for 151 of the 236 learners

However, in the consultation, despite these remarks on the cost of out-of-county placements in general the AP question  focused entirely on PRUs (see below)!

The third question - on Alternative Provision (that is, ) only mentioned PRUs!)
The third question of three- on Alternative Provision – only mentioned Pupil Referral Units!)

Now, as regards PRUs, I would not throw the baby away with the bathwater and would definitely ensure that  excellent provision in Suffolk is not lost in any rationalisation we undertake, and I was happy to respond saying as much.

HOWEVER, I concentrated most of my response on the hidden question  of what Suffolk is doing, or rather not doing, for students – like my own child – who was fortunate enough eventually to be sent out of Suffolk because Suffolk SEND education so completely failed to provide an education for them (despite costly but unstructured, unquantified and unthought-out  ‘interventions’ ).

This is not because of my personal interest but because of my understanding of the cost involved on the one hand, and the reasons for the cost on the  other.

SEND covers a hugely wide range of conditions; individual schools  seem to provide pretty much what education they choose to these (clearly second-class) pupils and SCC, the statutory authority for education and social care, often has to pick up the costly pieces of their cherry-picking failure. Why should this be the case?

Looking at this SEND consultation it seems that there may be a tendency to view the cost of premises and salaries as where cost-savings and rationalisation could be made.  I therefore urged SCC to look at the often inappropriate delivery of SEND education itself.

For a start , why should (as ever) the needs of young people with social and behavioural problems be asked to conflict with those with health issues and cognitive deficits?

As  example, my own child with a physical disability  was educated away from her peers  in a unit along with those with anger issues and other behavioural problems. Why?  You tell me.  Seemingly for the same reason as her current education establishment  (a specialist college outside Suffolk dedicated to her medical  condition)  is conflated with PRUs  in the reply box for this consultation.

(And even then, PRUs who educate short-term those who can be reintegrated into mainstream school are given the whole of Box 3 in a 3 box consultation document supposedly dealing globally with educational provision for Special Educational Needs and Disability. The disabled once again become second-rate citizens?  You couldn’t make it up). It is neither fair or reasonable to either group.

So, redressing the balance and talking specifically about educating specifically disabled young people – Suffolk’s  continuing failure  in  the field of SEND teaching and  curriculum delivery is expensive and an essential part of our problem. It is an area that this consultation document seemed reluctant to address.

Let us not beat about the bush – I’ve heard stories of parents who treat SEND provision as if it were ‘childcare’ but I would contend that there is a lot of Suffolk SEND provision that is arguably little better than childcare: with ‘educators’  seeing little responsibility for the future of their students; setting challenges that do not challenge and awarding gold stars and pats on the head instead of a  robust and rigorously constructed syllabus looking realistically towards their future after education.

SEND education – if it is NOT to be childcare – should be looking at the longterm future of the pupil. If it is to be effective and cost-effective , it should explore possibilities of independence, expect  the possibility of paid employment, work for realistic integration with employers’ needs , not be dismissive and patronising of pupils’ potential,  skills, capacities. ( Here, the  education, employment and discrimination sections of this blog post (click for link) although epilepsy-specific, have universal relevence.   Suffolk produced a strategy document 2015-18  last October. But non-specific optimism  is no good without teeth and this was toothless. Just like Suffolk’s current  Inclusion and Equalities strategy which completely excludes having to contemplate the situation of all the disabled people in Suffolk  and their inability to find work because they have not received adequate or even appropriate training or education  (see link). Disabled people and their problems seem remarkably invisible to the policymakers of Suffolk).

Yet not educating, or mis-educating these young people  is at the short- and long-term expense of the taxpayer as well as the young person.  And failure to address the need  of provision in-county has greater ramifications now we have a statutory duty to provide to age 25. We have an absolute need to question and query and qualitatively analyse the outcome  of what is taught to young people with disabilities in the same way as we assess and monitor mainstream provision.

Will Suffolk now improve the SEND offer so that disabled young people can expect the same quality and monitoring of  education  as their able-bodied peers get by right?  Not, you might say, a very big ask.  And a damn sight cheaper ask then sending them out of county, like nineteenth century black sheep to the colonies.

We wait for the next stage of the consultation to see whether these issues have been taken on board.

Woodbridge Wheeled Warriors


Woodbridge Wheeled Warriors poster

The Woodbridge Wheeled Warriors are the region’s first wheelchair rugby team. They were formed in 2013, when Woodbridge Rugby Club worked with Great Britain Wheelchair Rugby to bring the sport to the East of England as part of the Paralympic legacy. They have played competitively since 2014.

They train on Sunday mornings at Rock Barracks and have capacity for more players – even those who just wish to train.

A taster session is being held on Sunday, February 28, at Brackenbury Sports Centre, Felixstowe from 10am-12.30pm .

Better Bus Passes WERE affordable all the time!

Emprotesting2 (2)
Bus passes are hugely important for both disabled and elderly bus users

Since Suffolk County Council took over administering the Concessionary Bus pass scheme from the district councils, they have managed a significant underspend every year  which they use to fund other things – not necessarily connected with public transport. This is cynical and inappropriate –and is defended by the council with the limp rationale that this money is ‘not ringfenced.’

Can I remind you of the importance of bus transport for the elderly and disabled in a large rural county like ours – and the impact on services which this cheeseparing decision has had, through the law of unintended consequences?

BUT , last week Suffolk County Council’s 2014-15 budget outturn (revealed at last week’s Cabinet) showed definitively a Passenger Transport  underspend of £400,000 due mainly to half a million pounds of savings in spend on Concessionary Travel. On being questioned, the  Cabinet Member for Highways and Transport has confirmed that  similar savings have been made every year since the County Council  took over the administration of the Concessionary Travel scheme from the district councils.

The dreadful thing about this underspend is that SCC do not allow the elderly or  disabled people to use their bus passes before 9.30 in the morning, because they say it is ‘unaffordable,’ AND in July 2011 Council voted to support a motion put forward by myself -as Shadow Spokesperson for Transport –  to change this! They voted  that concessionary bus pass holders eligible due to age should be able to travel using their passes from 9am during the week, in addition to removing all time limitations for disabled pass holders. (Full details here)

This decision was undemocratically quashed by Cabinet on the grounds of cost (estimated at that time to be around £200,000).

In other words, four years ago  the entire membership of Suffolk County Council voted for an action that would help the most vulnerable members of our county, the Cabinet undemocratically overruled the council’s decision on the grounds of cost, and now it seems as if the over-ruling was made on a spurious and mistaken basis – to put it mildly!

In full council last week I reminded the current Cabinet Member for Transport of the decision to overrule Councils vote and I asked: “As arguments of cost are groundless from the evidence of these outturn figures,   will the Cabinet member now engage to  revisit and reinstate that decision, so that the concessionary pass holders of Suffolk can once again enjoy the same benefits they had before the County Council took over administration of the scheme – and which, in some cases (the blind, for example) they had enjoyed since the Second World War!”

Suffolk Fails Disabled People

Caroline Page, County Councillor, Woodbridge
Caroline Page, County Councillor, Woodbridge

At SCC’s full council last Thursday, I asked  a very  pertinent question about SCC’s poor funding of Concessionary Fares which you can read if you follow this link.  More, I hope will follow!

I also commented forcibly on Suffolk’s current Equalities and Inclusion policy ( accessed here – Agenda Item 7 ) – which has surrounded itself with a sufficiently large number of walls to allow it to congratulate itself for being responsible for doing not very much – not half enough, in my opinion. In particular it completely excludes having to contemplate the situation of all the disabled people in Suffolk  and their inability to find work because they have not received adequate or even appropriate training or education – an extraordinary omission for such a policy, one would think (and also one I have drawn attention to before now!)

“Whilst I notice and applaud what I have read, I want to draw your attention to a noticeable gap in our current priorities for Equalities and Inclusion, which I have already raised at Cabinet.

I am therefore saying the following on behalf of the many people with disabilities who have been failed and continue to be failed by our education and training.

In Cabinet last Tuesday, SCC’s Adult Learning Strategy highlighted Suffolk’s woeful performance in educating young people with disabilities for employment.  We heard that ‘people with disabilities in Suffolk are not gaining the skills to access meaningful employment.”

Low academic achievement among Suffolk students with learning disabilities is too often put down to the failure of that student, rather than the failure of the Suffolk school system to educate. And very convenient it is for the Suffolk educational system to think so!

It is is not enough to call students with such disabilities  ‘special,’ and pat them on the head, and give them gold stars, and tell them they have completed ‘challenges’  which did not challenge them – if it fails to prepare them adequately for a world of work. It is certainly not enough for educators to wave such young people out of the educational door at the other end of a life of gold stars and unchallenging challenges without taking any care or responsibility for what they have been offered and whether it was fit for purpose! We must challenge this!

And we need to ask employers to help us: neither we or they have qualms in telling schools where they have failed in educating other school-leavers. Can’t we all do the same for those with disabilities?

And we and our schools should be pointing out to employers that  if school leavers with disabilities can overcome such hurdles it doesn’t make them ‘as good’ as non-disabled employees  Dealing daily with an unsympathetic able-bodied world  gives such people the potential to be not only more determined and more competent,  but more resourceful, more resilient, more capable of dealing with failure and finding other ways round a problem. Better, in other words.

So, a plea for next year. I want Suffolk’s  equalities and inclusion policy to actively recognise and support Suffolk’s  disabled residents (of all ages) to achieve what they are capable of rather than to patronise this potential out of them!”

Epilepsy: Education, Employment – and Discrimination

To celebrate having been shortlisted for a Young Epilepsy Gold Champions award, I’m taking the opportunity to post a shortened form of the lecture I gave to a Suffolk Youth, Disability and Employment forum last year


Epilepsy is the world’s most common serious neurological disease -1 in 3 of us will have a single seizure sometime in our lives and for 1% of us this develops into epilepsy.  It’s not generally a biggie – most people with epilepsy  have no seizures at all because their condition is controlled by medication.

Although there are plenty of other hidden disabilities which unfairly affect employment  – in people who look ‘normal’ on the outside, who will make as good an employee as anybody else, but whose condition can cause reservations in the way people think of them and think of employing them – the impact of epilepsy on employment is particularly gross

Who gets epilepsy?

Anyone can develop epilepsy:   all ages, races and social classes. It occurs because it is familial, because of injury or illness, because of a stroke. And as there are over 40 types of epilepsy,  just knowing that a person ‘has epilepsy’ does not tell you very much about the type of seizures they may have and what they can or  cannot do.  Yet many – most – people with epilepsy are anxious to keep it secret because they fear stigmatisation, ostracism and discrimination.

And rightly, because people who are known to have epilepsy are so very frequently stigmatised, ostracised and discriminated against!

Of course, the thing about a hidden disability is that it IS hidden,  so that no-one need know of it unless it shows in some way – in epilepsy, the occasional public, embarrassing seizure in the street.  With the 70% of people who are controlled, you would not recognise them as having epilepsy  – in fact we’ll all know people who have it, but we don’t know that they have it.

So its Catch 22 – people are only faced with examples of epilepsy where its uncontrolled and overt, and publicly recognisable – the scary negative images you see secondhand rather than linking it to the ordinary person they know.

In fact since the death of that famous epileptic Julius Caesar  its hard to think of many public heroes, hard workers or divergent thinkers as role models for epilepsy. Or  even antiheroes, dossers and poor thinkers. There will always have been  at least 6 epileptic MPs in Parliament. Yet it was only finally in this current parliament that two MPs: Laura Sandys and Paul Maynard – were open about having it!

It is as if people think epilepsy were rabies – or syphilis – or smallpox.

Well, it isn’t.

Epilepsy treatment in Suffolk

Suffolk has no specialist epilepsy care within the county. You can’t get private health  insurance for epilepsy and so it  isn’t a popular neurological specialty.  (Cynical? Not me!)

As a direct result of this, simple changes and ‘tweaks’ to medication (simple but  vital – they could make the difference between a person functioning and non-functioning in society) historically took ages and gaining control took needless years. Years in which everyone became prey to lower and lower expectations, anticipating social care ‘solutions’ rather than recognizing that epilepsy is a temporary health problem for a person capable of leading a full and fulfilling working life.

Hurrah for GP commissioning – as long as you have a good GP.  It used to take decades for a tertiary referral from often defensive, arrogant ‘nothing can be done, don’t bother me’ consultants. It is now recognised that tertiary assessment needs to be done as soon as possible if someone with epilepsy is going to live – and work – as others do!

Latest NICE guidelines are here. Let’s do all we can to ensure they are adhered to, shall we?

Epilepsy and education

Limited expectations  of people with epilepsy impact equally strongly on education.  Shockingly, HALF of all students with epilepsy fail to reach the academic level predicted by their IQ, with effects that can be life-long. This is because a good educational outcome for  students with epilepsy is not just about medical care and risk assessment, but also ensuring that schools and teachers manage the impact that both the condition and the medication has on learning.

Its not a big ask but we’ve not got there in Suffolk. Those of us with personal experience know that low academic achievement among Suffolk students with epilepsy is put down to the failure of that student, rather than the failure of the Suffolk school system to educate. And very convenient it is for the Suffolk educational system to think so!

Last year, after a lot of  pressure from myself, Young Epilepsy’s School Epilepsy champions  scheme finally reached its first school in Suffolk. It’s a start – but we need so much more. The scheme needs to be rolled out – and taken seriously (no lipservice please, SENCOs) – countrywide.

Because (again I speak directly to SENCOs) it is not enough to call students with such hidden disabilities  ‘special,’ and pat them on the head, and give them gold stars, and tell them they have completed ‘challenges’  which did not challenge them – if it fails to prepare them adequately for a world of work. It is certainly not enough for educators to wave such young people out of the educational door at the other end of a life of gold stars and unchallenging challenges without taking any care or responsibility for what they have been offered and whether it was fit for purpose!

Here employers must help: they have no qualms in telling schools where they have failed in educating  ‘normal’ school-leavers. Couldn’t they do the same favour to those with epilepsy?

Remember, if school leavers with hidden disabilities can overcome these hurdles it doesn’t make them ‘as good’ as non-disabled employees – it  actually makes them better –  Paralympians to the workplace’s common-or-garden Olympians. Dealing daily with an unsympathetic able-bodied world  gives such people the potential to be not only more determined and more competent,  but more resourceful, more resilient, more capable of dealing with failure and finding other ways round a problem.

Its very much like swimmers train to become stronger with lead weights strapped to wrists and ankles. In the sports world it’s called progressive overload.

 Young people with disabilities have potential to go further and faster than others. What a shame the educational system has the tendency to patronise this potential out of them!

Epilepsy and  employment

And of course this patronising attitude doesn’t improve the job prospects of a youngster with a hidden disability. Instead it goes to prove – to employers, along with the school, the doctor, the young person and their family ( in fact the rest of the world)  that people with conditions such as epilepsy are simply not up to the job.

At the end of the day, its not just the health, and the education system that has an impact on work. Low employment is also failure of the workplace.

While some good employers accommodate epilepsy and similar conditions– and let’s remember:

  • 70% of people with epilepsy are wholly controlled by medication
  • epilepsy is a disability and people who have it should not be discriminated against
  • a diagnosis of epilepsy per se has no impact on intellectual attainment or innate capacity

it is surprising how frequently epilepsy is linked with joblessness.  Indeed, when my daughter was due to have statutory work experience at school  no workplace at ALL could be persuaded to offer her a placement– with the noble and notable exception of the Ipswich Hospital Education Service. (Thank you, wonderful Ruth Pickover)

Don’t let me get started here on all those young people with an over-developed sense of entitlement who are supported to feel that being an ‘unpaid intern’ is a breach of their human rights. Many disabled youngsters would give their eye-teeth for such chances. In fact the last time I went to a convention for employment and the disabled,  we were told that paid work was hard, almost impossible,  to achieve – and unpaid work of any sort was recommended as a goal.

Tell me, are disabled youngsters worthy of less human rights than the mainstream?

For how can anyone learn to support themselves unless they are ‘allowed’ to work? The Intolerant Press (you know who I mean) talk endlessly about the ‘work-shy’. For people with epilepsy it’s much more a case of employers being ‘worker-shy’

Epilepsy, employment and discrimination

So with a hidden disability what should you do? You are legally obliged to declare it, employers are legally obliged not to take it into account. All’s fine and dandy.


Does it really work that way?

I know a young woman with bad epilepsy. She has one or two tonic-clonic seizures a week – almost all outside working hours. She is personable, presentable, intelligent, capable, active and  hardworking. She has admittedly only one C-grade GCSE because GCSEs require you in effect  to sit through an exam without having a seizure – and she has yet to manage this.  But she can read Dickens and budget and market and cook for the family and do at least as much maths as I can and she’s studying horticulture at college.

Has she ever worked?

Yes. Voluntarily. In a charity shop. She had a job in a pub for a couple of days – a pub which didn’t ask her about her health. And she did fine,  until her ‘emergency protocol’ fell out of her handbag – and then it was not that they didn’t want her – its just that she was only on trial and someone was more appropriate. Is she discriminated against? You tell me!

The interesting thing is, I know someone else with epilepsy which has been lifelong, but only recently diagnosed.

This put her in a position where the underlying condition was present throughout her life, but  there was no requirement for her to disclose it because she wasn’t aware that she HAD epilepsy.

A hidden disability indeed.

What happened to her? Well she might fall down occasionally, but she got a good degree, has had a very full working life  running a publishing house, editing a national paper, writing to deadlines through the night as a writer whilst managing  singlehanded as lone parent, sole breadwinner and 24/7 carer. She has always cycled everywhere because she never felt wholly safe to drive, but backpacks across China every summer she can, and is now in local politics. No-one expects she can’t do things.

Where doors for the other young woman are shut – doors for this person are always open.  She’d be astonished to be patronised.

Would she have had the same life if she had been diagnosed in her teens? I doubt she would have been allowed it.

There are only 2 things she (ok, I) can’t do. I now officially can’t drive, when in the past I didn’t drive through preference.  And I must write out any speech in advance just in case a momentary  flash from the temporal lobe  deprives me briefly of words. It’s hardly a big deal.

Let’s hope that an official diagnosis won’t change what society allows me to do, and how society allows me to work, eh?

And let’s look long and hard at what society is allowing others to manage.

It’s not only stereotypes we have to challenge,  its also the preconceptions of those who intend to support us!