Parents of disabled children traumatised by the public bodies that should be supporting them

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“Difficult people are usually having a difficult time.”

This observation set the scene at a recent conference organised by the School of Law at the University of Leeds and the charity Cerebra. The event aimed to explore why public services, particularly social care, that should be supporting families of disabled children are instead traumatising them, and how this dire situation can be overturned.

I’d be astonished if there are any parents of a disabled child who haven’t experienced this in some way. It can have long-lasting repercussions, setting a negative and distrustful tone for a relationship between a family and their local authority that is, of necessity, likely to be a long-term one.

No help here

Because these relationships are ongoing, and because they often begin when parents are in a state of grief, shock and sheer blind panic, it’s very important that early contact is handled with sensitivity and that local authorities don’t automatically convey a message of ‘no help here’.

When the duty social worker in my local authority’s Children with Disabilities team told me in 2009, having never met my little daughter, that “she is no different to any other two-year-old”, this casually devastating dismissal upset me more than the diagnosis of Rett syndrome we had received several months previously. Rett syndrome is a severely disabling neurological disorder, which means that my daughter is unable to sit, stand, walk, talk, or use her hands in any functional way.

It was being told that we were wrong, that there wasn’t a problem and we were clearly trying to “get” something we weren’t entitled to, that finished me off emotionally. I couldn’t understand it: this was the ‘Children with Disabilities Team’, my child had been diagnosed with an unarguably serious disability; I had a letter from a paediatric neurologist setting out all the ways she was developmentally delayed and would need ongoing support.

I thought in my naivety that social workers would welcome the clarity of a diagnosed condition. I assumed they would want to work with me to ensure we had what we needed and to plan for my daughter’s future as a person who would always need round-the-clock care (Pause here for hollow laughter).

If there had been honesty, and if social workers had explained to us that they try to manage “demand” by delaying assessments until children are older, we would have known where we stood (although we would have disagreed). Instead, what is conveyed to parents is an attitude of institutionalised suspicion, where professionals assert that your child does not, in fact, need the very thing you know they need.

Complex trauma and gaslighting

Trauma is multi-layered and complex, with a high percentage of family carers reporting they’ve experienced symptoms of complex post-traumatic stress disorder (C-PTSD). In many cases, the social welfare system (as it was described at the conference) not only fails to provide necessary support for families who are reeling from their disabled child’s needs and the up-ending of their lives, it creates additional trauma for these families by the way it responds to them.

Vivien Cooper, the founder of the Challenging Behaviour Foundation, summarised exactly what it is that traumatises families:

Lack of control
Being powerless to make people understand
Having to remain calm, polite and reasonable – yet persistent
Fighting a system that’s working against you

There was a discussion of the impact on families of the gaslighting that so many of us have experienced: education or care professionals who try to tell parents that nothing is wrong with their child: it’s the child’s behaviour; it’s most likely caused by something that parents (who are we kidding – mothers) have done, or not done. These professionals make many references in their reports to things like “mum’s mental health”.

There’s a persistent belief that parents are, if not actively malevolent, at least deeply clueless. I recall the first occupational therapist who saw my daughter – my daughter with Rett syndrome, my second child – carefully explaining to me how I should play with her and give her “lots of big hugs” to facilitate her development.

Having to be “beyond reasonable”

No one is immune from having a disabled child. This can happen to any of us. Viv Cooper noted that families have to be “beyond reasonable”, because it’s all too easy to be labelled as “difficult”, with all the ensuing consequences. There’s a steady downward spiral: families care for their child—> they seek help—> they find themselves being blamed for their child’s difficulties—> the system becomes defensive.

Far from seeing families as informed and experienced partners, the system perceives us as ‘deficient’. Yet none of us are born ‘difficult’ or wanting to fight. We find out soon enough that we have to overcome relentless hurdles to get support for our children, and these battles are constant and lifelong.

At worst, parents can be accused of fabricated or induced illness (FII) in their child, and it’s impossible to talk about system-induced trauma without reference to this. The official line is that FII allegations are rare, but families report something very different.

It’s abundantly clear that not all parents are treated equally by professionals. Parents who are disabled themselves appearing to be four times more likely to be accused of FII than non-disabled parents. Devastatingly for families, while allegations are risk-free for public services, they are never erased from families’ records, even if such allegations are entirely inaccurate.

As Mary Busk, who works for NHS England in the Learning Disability and Autism Programme noted, local authorities’ widespread ignorance of legal structures and duties puts huge pressure on parents to know and understand how the system works and to prepare for all eventualities. She observed that parents do need training: not in how to be a better parent, but in how to navigate the system that’s supposed to help and support them.

Promoted

The social care system is fatally flawed

Professor Luke Clements from the School of Law at the University of Leeds says it’s vital to recognise the main cause of a family’s trauma may be their dealings with the social welfare system. In his view, there’s a fundamental problem with existing social care legislation and statutory guidance. He says that the Children Act 1989 is “fatally flawed” because it fails to separate “children in need” from “children at risk”.

Local authorities have legal obligations under the Children Act 1989 to children in need, who fall into two broad categories: children who are at risk of abuse or neglect, and disabled children. But the problem is there’s only one assessment protocol and families who ask for support too often find themselves being investigated instead.

With the political focus in the last two decades firmly on risk, what should be about the welfare of disabled children and families is instead about surveillance. Parents report their fear that asking for support to manage their lives will mean their child is removed from their care.

The current focus is on protecting children from their parents, rather than recognising that families of disabled children cannot manage everything on their own, without support.

Luke Clements and many others make the case that what’s needed is a commitment from the Government to a separate assessment process for disabled children. We need new statutory guidance on how social workers should approach the assessment of disabled children and their families where there is no reason to suspect abuse or neglect. To assist the Government in this task, Professor Clements and colleagues have produced a detailed draft of what this guidance might look like.

The Law Commission is carrying out a review of the current legislation governing social care for disabled children. They are due to publish their conclusions and proposals for change in a report sometime this summer. Hopes are high that they will recommend a new addition to the Children Act that focuses on disabled children as a separate category of children in need.

Creating impactful change

“The state, the local authority, is the servant of those in need of its support and assistance, not their master.” – Lord Justice Munby

What will it take to create change? Elly Chapple, founder of #FlipTheNarrative, says that everyone needs to “put down their swords” and learn to work together. The key is for system professionals to build trust and authentic relationships with families, to be accountable and own their mistakes: “It’s okay to screw up if you apologise.”

Peter Baker, senior lecturer in intellectual disability at the Tizard Centre at the University of Kent, emphasised the aim should be to avoid breaking families in the first place, rather than figuring out how to mend them: “It is vital for services to understand negative experiences and stop blaming families,” he said.

What will it take to make this happen? Legislation, guidance and other formal measures are all essential. But ultimately it comes down to a massive change in attitudes to families of disabled children. We don’t seek help for our children and ourselves for shits and giggles; we do it because managing alone isn’t always possible. Our beautiful disabled children aren’t the problem here. And neither are their parents.

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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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