The Fred Foundation

Page 3 of 4


Yesterday I was interviewed by BBC TV news about the Ofsted Annual report. It’s not an unusual occurrence, being contacted by various news organisations to talk about the crisis in SEND. It’s just depressing after more than a decade – and four since the “reforms” – I’m still having to say the same thing.

Almost every report that comes out of charities, researchers, Ofsted and the DfE’s own commissioned research  – many of which we have covered on SNJ — reports the same picture: Not enough money, not enough SEND in teachers’ training, too many children being excluded, too many poor outcomes for disabled children, rising numbers heading to Tribunal, not enough mental health support in schools, too high criteria for access to CAMHS, insufficient support in mainstream, too, too many children in crisis.

It physically hurts to keep writing about it. And I know, from having been there, how much it hurts families going through it. I want to give up and run away and do something that actually pays, now my boys are older (My eldest was 21 earlier this week, my youngest is 19). But those families still deep in the hell that is the SEND process, and those about to plunge, cannot walk away; indeed, they know they MUST not walk away despite the stress, the hurt and the fury that the system invokes.

Behind the Ofsted report headlines

The headlines of the report were covered in the press yesterday, who can jump on it early but whose reporters miss the depth of context, so I’m adding further quotes from the report here.

The BBC producer I spoke to yesterday for example didn’t know about the SEND inquiry. This is why, although it’s heartening that I’m constantly asked for help by journalists covering the SEND story du jour, the fleeting nature of the news cycle means it’s forgotten the next day.

“Something is deeply wrong when parents repeatedly tell inspectors that they have to fight to get the help and support that their child needs. And I’m not talking about middle class parents wanting extra time in exams for their child. I mean adequate support for our most vulnerable children with SEND, which is a basic expectation of a decent, developed society. We need to do better.

Amanda Spielman, Ofsted Chief Inspector

The Ofsted report was damning in the extreme about SEND provision – all it had to do was look at the results of its own (and CQC’s) SEND area inspections, where almost half of those local areas so far inspected have failed to meet expectations. And we’re still not even halfway through the first round.

“In the second year of our local area SEND inspections, we have seen a continuing lack of coordinated 0–25 strategies and poor post-19 provision. We have seen a continuing trend of rising exclusions among children and young people with special educational needs and/or disabilities (SEND). Mental health needs are not being supported sufficiently. The quality of education, health and care (EHC) plans is far too variable. Critically, the gap in performance and outcomes for children with SEND is widening between the best and the worst local areas.”

Ofsted Annual Report 2018

“We are still seeing too many local areas providing a sub-standard service when it comes to SEND provision. At the end of our second year of LA SEND inspections, we have inspected 68 local areas. Thirty of these have been required to provide a written statement of action.”

Ofsted Annual Report 2018

And, I might add, that any number of those areas who “passed” their SEND inspection should not have, according to local parents.

That translates to tens of thousands of disabled children being failed by their school, health service, social care and local authorities. And, as I said, that’s just from the areas that have been inspected so far. It’s sickening. Because these are not inanimate institutions, they are run by tax-payer-funded human beings who are systematically failing in their legal duties, and their jobs, to support vulnerable children.

It means children aren’t being assessed when they should be and when they do get an EHCP, it often isn’t legally compliant:

“… the quality of these (EHC) plans is far too variable within some local areas and across the country, and contributions from care services to EHC plans are weak. The areas that have successfully implemented the government’s reforms are jointly commissioning services that support parents and lead to good outcomes for young people….

…But many EHC plans have not been successfully implemented. As a result, the gap in outcomes for children with SEND continues to widen. Identification of SEND is weak and those who do not quite meet the threshold for an EHC plan have poor outcomes. Understandably, this leads to many parents feeling that to do the best for their children, they need to go to extreme lengths to secure an EHC plan, which of course not every child will need.”

Ofsted Annual Report 2018

Or at least they wouldn’t have needed and EHCP  if they’d had early enough intervention. LAs know early intervention works—and yet so many deny assessments at an early stage and have closed, or are planning to close, local Children’s Centres. They expect parents, often without cars, to be able to travel across or between towns via expensive or non-existent public transport – with children in tow – to get to their next nearest. Ain’t gonna happen.

“We are still seeing too many local areas providing a sub-standard service when it comes to SEND provision…Frontline workers are clearly dedicated and professional, but improvement in many local areas is often slow and inconsistent. In particular, in the areas we visited, we are seeing:

– a continuing trend of rising exclusions among children and young people who have SEND

– mental health needs not being supported

– children and young people who have autism waiting up to 2 years to be diagnosed; some were not being educated at all during this time

– a continuing lack of coordinated 0–25 strategies and poor post-19 provision”

Ofsted Annual Report 2018

Is funding to blame?

Yes, partly, but it’s far from the only reason. Lack of funding is integral, especially fully-resourcing the 16-25 year olds who were promised much, only to discover the Children and Families Act has played out like the proverbial Mercedes in the driveway but no food in the fridge. If that’s too obscure, it means it’s all show and no substance.

But it’s lack of culture change that is just as important. The very thing we have said from the beginning that was crucial to success. I haven’t heard much in the SEND inquiry about this specifically (though see more, further down).

Fine words about improving outcomes for children with SEND, as echoed in LAs up and down the land, have not, and are not, translating into changes in belief. It’s like their lips are moving but their heart’s not in it because somewhere, deep down, they think it’s either the fault of feckless or faulty parenting or, conversely, middle-class, sharp-elbowed parents “gaming the system”. I thought this attitude had disappeared, but I was asked this very question on LBC Radio just the other week. Yes, I gave him an ear-bashing, but the “hostile environment” brought by austerity and compounded by Brexit, has ramped up attitudes against anyone who needs to ask the state for some kind of help, against people with disabilities and against those from racial minorities.

Off-rolling, schools’ dirty little secret, uncovered (again)

Ofsted describs off-rolling as “the practice of removing a pupil from the school roll without a formal, permanent exclusion, or by encouraging a parent to remove their child from the school roll, when the removal is primarily in the interests of the school rather than in the best interests of the pupil. Off-rolling in these circumstances is a form of ‘gaming’’. 

This is not the same as a formal, legally conducted exclusion and Ofsted has identified around 300 schools with ‘exceptional levels’ of pupils coming off school rolls and not reappearing elsewhere, between Years 10 and 11. Ofsted acknowledges it’s the most vulnerable children who are more likely to be excluded or off-rolled. Its new education inspection framework (EIF) is aimed at changing this, by focusing more on inclusion as a mark of a good school, and less on league tables. Will it make a difference? Let’s keep watching.

Parents speak to the SEND Inquiry

At the same time as the Ofsted Annual Report was making news, six parents of disabled children were taking part in the SEND Inquiry hearings before the Education Select Committee in Westminster, three of whom represented parent carer forums.

The parents’ stories in the first half were bad and difficult to hear but not unique, far from it. They are stories we’ve heard repeatedly If you want to watch it all, you can do so here.

Earlier this week, the Inquiry published 600 submissions to the Inquiry and said it will still accept further submissions until the publication of the report.

To be honest, I’m not sure what else can be said that they have not already heard, unless it is more about how the lack of culture change has heavily impacted on these reforms. As we said at the start, there is little point in changing the structure of a system if those administering it are going to simply overwhelm it by doing the same things they’ve always done because ‘that’s the way they do it”

Taking up this theme was the stand-out speaker, for me, Penny Hoffman-Becking. Penny is from Kingston and Richmond where her PCF, SEND Family Voices, recently closedbecause the local authority was refusing to work with them, leaving them to conclude that co-production in that environment and culture just wasn’t possible.

I’ve isolated a few minutes of Penny speaking because what she says sums up the experience of many parents who have worked their guts out in PCFs, only to end up disillusioned and exhausted. I urge you to watch and tell us if that’s also your experience too.

The other issue is Brexit, yet again. If parliament is dissolved because of a snap election, the SEND Inquiry goes bye bye. And that really will be a tragedy.Advertisements

Lucinda is running the Royal Parks Half Marathon for The Fred Foundation on Sunday 14th October! Anything at all you can spare?

“Across the country many autistic families are struggling as the extreme financial cuts in social care and education bite harder every day. Children and young people are not even getting the education the State is obliged to provide by law without a fight. Parents are often so worn-down by the day-to-day caring of their children with complex autism that they cannot fight a fight that often ends up in court”…please click my link below to read more Anything you can spare very gratefully received xx


Royal Parks Half Marathon

Help Lucinda change the world! Make a donation now?

‘I WAS A CHILD CARER’ – When you are a carer, it can be hard to relate to your friends, with their “normal” lives. You have responsibilities. You have to grow up very quickly. “You can’t muck about and be so carefree.

‘I was a child carer – it made me who I am today’

Rhiannon Lucy Cosslett and her brother

From the age of 12, writer Rhiannon Lucy Cosslett helped look after her severely autistic brother. Like hundreds of thousands of other young carers, she took on major responsibilities early – but says it made her the person she is today.

Being a young carer makes you different from your friends. This is one of the first things that you learn. You visit their houses after school and notice how different their lives are from yours. Their houses seem tidy, quiet and peaceful.

Mine was the opposite.

My younger brother is severely autistic. He was diagnosed when he was four, but we knew there were issues before then.

Even as a baby, he wouldn’t stay still when you tried to hold him – my mum, Anna, said he was like an octopus wriggling in her arms.

As a toddler, he was hyperactive. He tore through our house, leaving chaos in his wake. He would climb furniture and banisters, empty cereal packets and cartons of orange juice on the floor, scribble on the walls.

Rhiannon Lucy Cosslett's brother

He didn’t sleep. He didn’t talk. We knew our lives would be changed by his autism, but we didn’t realise by how much.

I am six years older than my brother, and cared for him along with my mum until I left home in North Wales at 18 (my parents separated when I was 12).

It’s been estimated that 700,000 children and young people across the UK, some as young as five years old, are caring for family members. But the true number is likely to be much higher, as many are hidden from view.

I know what an isolating and difficult experience it can be – growing up, I had no idea there were so many other children out there in similar positions, caring for ill and disabled relatives.

When you are a carer, it can be hard to relate to your friends, with their “normal” lives.

You have responsibilities. You have to grow up very quickly. You can’t muck about and be so carefree.

Rhiannon Lucy Cosslett and her brother

I certainly didn’t misbehave – I felt that my mum, who did the lion’s share of the caring, had enough to deal with, without me being naughty as well. My brother barely slept and she was exhausted most of the time from getting up more than four times a night. I would care for him while she snatched an hour of sleep and, as I got older, for much longer stretches so that she could go to work or spend the evening with her then partner.

I did have moments where I felt quite separate from my classmates, who were still having their dinner cooked for them when I was preparing meals from scratch. On the other hand, being able to cook stood me in good stead in the long run, as did many other skills and traits I learned from being a carer – responsibility, compassion, empathy, selflessness, multi-tasking, patience and generosity.

A sense of humour was a must, especially when it came to toilet trouble. Mum and I cleared up enough poo for a lifetime (this may be why, at 31, I am still not sure how I feel about having children).

It taught me basic plumbing – give me some string and a coat-hanger and I can fix a broken toilet – but also how to laugh when you’re up the proverbial creek. You had to, because otherwise you would cry. Then again, we did lots of that too.

We had two floods and a fire, and endless weird and embarrassing moments. People loved my brother – he was a very cute child with a huge goofy smile and big blue eyes, but his behaviour was – how can I put it? – unpredictable.

Rhiannon Lucy Cosslett's brother

Sometimes when we were out and about he would take his clothes off and run around while we chased after him, waving his trousers desperately like a flag. He was always falling into lakes and rivers, or reaching into people’s bags of chips and plucking them out.

He had no sense of fear so you had to be hyper-alert. He once ran into a field with a bull, which was terrifying. Thankfully we got him out in time.

He also had tantrums in public and people would stare and make comments. I always confronted them when this happened – being a young carer made me quite feisty. I had a keen sense of injustice from a young age and that has translated into my journalism, particularly when it comes to the hardship and discrimination that disabled people often face.

Schoolwork was difficult as sleep was disrupted, and the house was really noisy all the time.

I learned how to concentrate even if all around me was total chaos. I developed a love of reading and tore through several library books a week. In a way, being a carer is what made me a writer. When things were difficult, I needed a way to escape, and reading provided that, but it also made me interested in people.

Rhiannon Lucy Cosslett and her brother

You learn so much about humanity when you are looking after someone vulnerable and you need empathy, a vital skill when it comes to creating your own characters.

Teachers didn’t always understand. I’m not surprised that Carers Trust Wales have found that many children who are carers are not known to local authorities. Adults often don’t think to ask, or when you try to explain why your homework is late, or indeed why you are, they will just say that you are making excuses. I’ll never forget the horrible reaction of an after-school drama teacher who refused to accept that I had missed a rehearsal because I had to look after my brother.

Nevertheless, for every nasty person there were many more kind ones.

I had a couple of close friends who lived nearby – Hannah and Kate – who have always been there, and would keep me company when I was on my own with my brother at home because mum had to work or pick up a prescription. (Hannah is now a mental health nurse and says her experience looking after my brother helped inspire her to pursue that career.)

As I grew older, I opened up to more friends about my home situation. They were all really supportive, treating my situation as though it were no different from anyone else’s. Sometimes people act as though they are uncomfortable around my brother because of his strange seeming mannerisms and noises, but they never did. They helped me realise that there is no such thing as a normal family.

My mum trusted me, and in many ways that worked out quite well – as long as I made sure my brother was OK, I could have people over and she could benefit from finally having a bit of a social life. Often friends would help put him to bed, and I remember being particularly touched to find my friend Sam reading him a bedtime story.

Rhiannon Lucy Cosslett's brother

Leaving home was hard. By that time, my brother was in a special school, staying overnight during the week and coming home at the weekends. Yet I still felt like I was abandoning my mum, who was finding it increasingly difficult to cope.

My brother had grown very big and strong and she couldn’t control him any more. He had also developed epilepsy, which needed careful management and supervision, and his obsessive-compulsive disorder meant that taking him outside was more and more difficult. She became very isolated.

I missed them both terribly, because although things had been hard at times, we were a family.

I cried for two weeks, and I think the sadness and the exhaustion are with me even now.

Although I have a good job and a happy life, there are some days where I still feel very low.

When my brother was nearly 15, things became so difficult for my mum that he went into school full-time. He is now 25 and lives in a care home. He is very happy there – his carers are brilliant, and I see him as much as I can for walks on the beach and trips out for lunch.

Rhiannon Lucy Cosslett and her brother

I am grateful for how lucky we are – not everyone receives such good government support. If the help hadn’t been there, I might never have left home. I certainly wouldn’t have gone to university or have established a career as a writer.

Whenever I meet young carers, I want to give them a hug and tell them that I know what they are going through.

They should be given more support – both practical and respite care. I certainly would have benefited from some counselling.

No child’s education should suffer because they are looking after a family member, they should be encouraged by adults, and given the help they need.

Sometimes I am asked if I wish my brother had been “normal”. It’s a strange question, because it’s essentially asking me if I wish he were a different person.

Rhiannon Lucy Cosslett's brother

Obviously, I wish that he did not have to suffer, which he does as a result of his epilepsy and anxiety. But I love my brother for who he is, and looking after him has been the defining experience of my life.

Caring has made me strong as well as sensitive. It has made me a kinder person and given me the motivation to fight for social justice. But most of all I feel lucky to have felt such profound, unconditional love for my little brother. That has been a gift.


Anyone can be a father, but to be a Dad to a young person who has complex autism is quite something else.  So, to all the unsung heroes who care for autistic loved ones and especially to the Dads who care for young people with complex autism and learning difficulties and never have a day off from worry or strain. HAPPY FATHER’S DAY.  We see you.

Renuke & friends at Spark Foundry UK supporting The Fred yet again!


Dear friends! We are cycling c.300 miles from London to Paris next week in aid of the @fredfoundation1 (all expenses covered by ourselves). We’d love it if you can show us a little bit of support #Cycle4Fred #cycling #charity @SparkFoundryUK

— Renuke Samarasinghe (@Renuke) May 21, 2018

The Hidden Lives of Siblings of Children with Disabilities’ – ‘WHAT ABOUT ME?’ By Avidan Milevsky Ph.D

“What about me?” Enhancing the Lives of Siblings of Children with Disabilities by Avidan Milevsky Ph.D

There is one member of the overall family system who has been neglected as part of the effort to attend to disability issues: namely, the siblings of those with disabilities. As I have argued in multiple venues, sibling issues in general is an area that has been neglected in research, application, and the law despite the fact that siblings play an integral role in the lives of people throughout life. This neglect of sibling issues is even starker when examining the attention given to siblings in overall disability services.

To begin shedding some light on this problem, allow me to present several common issues faced by siblings of children with disabilities:


Siblings of children with disabilities are at a greater risk than average of developing emotional issues, anxiety, and stress. These problems are known as internalizing issues, not obviously visible, and may be an attempt by these siblings to hide their problems; they may want to be well-behaved or protect their already overburdened parents. Other issues that these siblings may face are peer problems, as well as a lack of engagement in extracurricular activities and academic issues as a result of limited time and money.


Considering the attention given to the child with the disability, siblings may neglect their own issues. In some cases, siblings experience parentification where they are expected to have many responsibilities for themselves and their sibling, developing duties similar to those of a parent and overlooking their need to act like children. This responsibility may seem positive to parents but may actually be precursors to emotional distress.


The family focus on the child with the disability may take away from the attention desired by the sibling. Time spent on medical and therapyappointments for the child with the disability limits the amount of time parents can spend with the other siblings resulting in their feeling neglected. Furthermore, parents may spend a great deal of emotional energy on the child with the disability leaving little emotional energy to support the sibling.


Siblings may have similar questions about the sibling with the disability as do parents but have little information or resources available to them. During doctor visits, they are often left in the waiting room. Parents may want to keep well siblings away from the treatment environment or may want to protect the privacy of the sibling with the disability leaving the well sibling feeling in the dark about what is going on with their sibling. They may have many unanswered questions about their sibling including whether their disability can be transmitted and what will be in the future. With little or no information, siblings may develop their own ideas about what is happening, often much worse than is actually true.


Sibling may experience a range of emotions about their situation. They may feel guilt wondering if they caused the disability of their sibling or they may feel guilt about why the disability did not happen to them. They may feel fear about the health of their sibling or about what may happen to their sibling in the future. Siblings may also experience resentment, anger, or jealousy towards their sibling considering the attention and resources expensed on their sibling. An additional common feeling is embarrassmentas a result of the behaviors and appearance of their sibling. In some cases the embarrassment may be so great that they disassociate from the sibling with the disability. They may claim to be an only child or may not invite over friends so that they do not have to answer questions about their sibling.


Beyond what is known as the pathogenic perspective, which highlights the difficulties associated with having a sibling with a disability, this difficult circumstance may also offer some opportunities for siblings. These siblings often develop certain positive characteristics such as self-controlcooperationempathy, tolerance, altruism, maturity, and responsibility as a result of dealing with their family situation. They may develop loyalty and a protective attitude towards their sibling. In some cases these siblings use someone’s attitude about special needs as a test for screening friends and mates. Their involvement with their sibling may even lead them to choose future occupations in the helping professions.

I see first hand at my university the great strides that have been accomplished in offering an environment that offers everyone a chance to succeed regardless of limitations. I am inspired by the great work of our university’s office of disability services in caring for the needs of all students. This great work is being replicated in many industries and institutions across the country. Focusing on some of the unique issues faced by siblings of individuals with disabilities is an important step in the continuous work that is being done in disability services overall. I hope to highlight this focus in future columns about variations in how siblings experience the above outcomes and some recommendations that can be used by families and service providers in helping these brave and burdened siblings.

Avidan Milevsky, Ph.D., is an associate professor of psychology at Kutztown University of Pennsylvania.In Print:Sibling Relationships in Childhood and Adolescence: Predictors and Outcomes(link is external)

« Older posts Newer posts »