Understanding Parent Blame: Stories of institutional failure and complex trauma BOOK GIVEAWAY!

Contents

“Until my mid-40s, I was walking around in a myopic daze, still hanging on to the comforting belief that while flawed, the UK state was essentially reasonable and fair… I would go as far as to say that the state’s default position appears to be to ignore parent voices and hope parents go away.”
‘Amy Payne’, from ‘That woman!’ in ‘Understanding parent blame’

When you become a parent and begin the process of getting to know your child and how to care for them, what are you told? You’re told to trust your instincts. It’s comforting and reassuring advice, mostly: you know more than you think you do, and you and your child are going to be okay together.

But when does this stop? At what point does a mother, trusting her instincts that something is wrong, that her child needs medical care or therapy or extra support, become instead the object of blame rather than the person who knows her child best? Because the truth is, when you have a disabled child or a child with additional needs of any kind, this is typically the point that’s reached before your child or family receives any help or support at all.

Being blamed for your child’s needs can be subtle, with mothers consistently made to feel “less than”—such as the time an occupational therapist told me, reproachfully, that I “just needed to play with my child more”. Shortly afterwards, my daughter received a diagnosis of Rett syndrome that explained why she was unable to use her hands. Or it can be outrageously blatant, with parents blamed all the way to court and through proceedings that take their child away from them.

Blaming parents as a default response

Professor Luke Clements and Dr Ana Laura Aiello from the School of Law at the University of Leeds have edited an extraordinarily important new book, exploring the reality of parent blame and the devastating impact it has on families. They have sounded the alarm on “what happens when state institutions develop policies and foster practices that, by default, blame parents”.

In the introduction to the book, they say:

“Parent blame arises in situations where there is a failure by a public body to provide a level of support that a responsive state should provide for a child (and/or their family) and the default organisational response of the public body is to blame the child’s parents for this failure.”

There are 21 contributors, many of whom are parents, some of whom have had to write under a pseudonym because they are afraid of the consequences of speaking publicly. Other chapters are written by practitioners, academics and young people themselves.

At the book’s launch last month in Leeds, Professor Sara Ryan—herself no stranger to the most vicious of mother-blame—described it as “enraging, saddening, unsurprising”. Being blamed is an all too common experience for parents of disabled children, who – seeking support for their child and their family – are shocked to find themselves judged to be at fault for not being able to manage alone.

This takes us back to the fundamental problem with the way social care currently works for disabled children: the unhelpful-at-best, damaging-at-worst conflation of “support” (for children) with “protection” (from their parents).

The scene is set by an outline of research undertaken by the editors in 2021 on the experiences of families who seek help and support for their disabled child. They found that, when parents approach their local authority for help, they are routinely treated from the outset as if they are neglectful or abusive:

“These [interactions] convey the strong impression that the default position for children’s services departments in such cases is to locate the problems families face in parental failings and not in the lack of support that they should provide to these families.”

Book cover is an abstract image of a sad figure

A high personal price for expecting support

This isn’t just about attitudes to parents; it’s about the widespread failure to support children.

What sort of support are families looking for? Things like:

Social care support for disabled children,
Educational support for children who are not “fine” in school,
Appropriate responses from health care providers to parents’ concern about their child’s medical treatment, and
Adequate measures to protect a child from abuse in public settings.

Parents who ask for these things open themselves up to high levels of intrusion and judgement from professionals who they are hoping and expecting will help them. When parents push back and point out that their child’s needs aren’t being met, they can end up paying a high personal price:

“When families are unable to secure the support their relative needs and consequently express their dissatisfaction, frustration or anger, they are easily labelled as ‘difficult’ – and the blame is securely and conveniently deposited with them.”

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Somebody I am not

The anonymous mother who articulates her distress in chapter 10 at “being made out to be somebody I am not” speaks for so many of us.

And nowhere is this injustice more sharply felt than when parents are accused of “fabricated or induced illness” (FII). Parents who are themselves disabled are four times more likely than non-disabled parents—read that again: four times more likely—to face accusations of harming their children in this way. Four of the book’s 12 chapters are devoted specifically to the history, data and impact on families of the most egregious type of blame there is.

“For us, ‘fabricated or induced illness’ was not about our children’s wellbeing and health but a gateway that allowed certain people to act on their prejudices.”

If it’s distressing to read about the wrongful accusations that families have faced and the lasting effects on children and parents, I can only imagine what it’s like to be at the centre of them. The vast majority of FII investigations result in no follow-up action, and 95% of children remain living with their parents. But the trauma endures.

As one parent commented at the book launch: “You don’t get your children back even when they’re returned to you.” They are changed forever.

Key Content

a monkey in the jungle with a magnifying glass and a deerstalker hat

image includes graphics from the article

“A festival of gaslighting, insinuation and blame”

And so we come to parent blame in education. The chapter on education, with a particular focus on school attendance, is written by Louise Parker Engels, co-founder of Define Fine, a support organisation for parents and carers of children who struggle to attend school. She identifies the many ways schools direct blame at parents, which are so very familiar: telling parents their child is “fine at school”, or they need to set firmer boundaries, or they are projecting their own worries onto their child.

Parents—mothers in particular—are hugely impacted by their child’s distress at school and the battle to get support put in place. It affects their health, relationships and ability to work:

“[Mothers] feel judged and blamed by professionals, family and friends, at a time when they are already blaming themselves.”

We know that parent blame is a thread that runs through most families’ efforts to seek support in education for their child, regardless of their particular needs. As far too many parents know, the process of obtaining an Education, Health and Care (EHC) plan for your child is, as someone at the book launch put it, “a festival of gaslighting, insinuation and blame”.

Isn’t this familiar to so many of us? When you try to get educational support in place as early as possible for your child, you’re told it’s too soon. When you try to make sure the right things are in their EHC plan, you’re challenged on why you’re asking for so much. When you expect what’s in the EHC plan to actually be delivered, you’re chided that your child already gets more than other children, and don’t you realise there are other children going without?

A complex issue that shouldn’t default to blaming parents

Parent blame in education often focuses on school attendance, or absence, which has become a hot political issue, with each successive education minister, regardless of party, more determined than the last to proclaim their zero-tolerance of non-attendance. But of course the issue of attendance can’t and shouldn’t be considered in isolation from other factors, such as what stops children with SEND or mental health problems attending school, what they struggle with, and whether the support they need is being provided.

If a child is struggling to be in school, then the school should consider as a matter of course whether they may have any unidentified additional needs. It should be ready to work with parents to understand what these are and how to help.

The law is clear that children don’t need a specific diagnosis, or any diagnosis at all, before they receive support. And what should that support look like? It should be tailored to the individual child, and may include things like reasonable adjustments, a more tailored curriculum, medical needs tuition, online learning, therapeutic provision, and so on.

As the Children’s Commissioner has identified and as families know, children aren’t absent from school because they don’t want to learn, but because they don’t have the support they need in order to be there.

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Ending the blame game: learning to listen

Clements and Aiello are keen not just to paint a vivid picture of how “the system” fails children and parents, but to spell out what needs to change. The answer is simple and obvious – and shouldn’t be too much to expect. It involves public bodies listening to families and children.

Listening, and understanding “how the system that parents have to navigate generates trauma”. Listening, and grasping that parent carers live our lives under a microscope that would be anathema to most people. Listening, and recognising the massive power differential that exists between individual parents and the state institutions they depend on to support their child (or at the very least, to not remove their child from their family).

It also involves reframing risk. In other words, rather than pointing the finger at possible parental failings, point instead at system-generated failures, such as disabled children who don’t have a school place or essential equipment, and ask why this is and what needs to happen.

It means reforming the culture that prevails in too many parts of the public realm. Replacing an assumption that parents must be deficient in some way, and being prepared to work with parents to put in place the help and support their children need.

It means being prepared to challenge—or at least acknowledge—power inequalities. And taking a whole new approach to government guidance, to help practitioners understand what the law requires and what they need to do.

Doing all this would mean nothing less than fully upending and re-setting the relationship between families of disabled children and the public bodies they don’t want to have to depend on, but which exist for this very purpose: to provide the things that individuals can’t provide for themselves, because they are shared things. Things like living a life of fulfilment, purpose and dignity – for our children and ourselves.

You can find the book on Amazon here (buying using this link earns us a small Amazon commission, at no cost to you)

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Catriona Moore

Catriona Moore has a background in policy and communications and has worked for a number of health, social care and disability organisations.

When her younger daughter was diagnosed with Rett Syndrome in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle.

She juggles her work as policy manager for a national charity with caring and advocating for her daughter. She's passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably.

Catriona writes for Special Needs Jungle in a personal capacity, and all views expressed are her own.

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