“It’s not the despair. I can take the despair. It’s the hope I can’t stand.”
This line from the film ‘Clockwise’ regularly runs through my mind when contemplating government reviews of things. The thought that maybe this time problems won’t just be described, they’ll be resolved – with a clear plan of action for what needs to be done, resources to make it happen and accountability so that we can see whether it did.
Still hopeful?
We are still, just about, at the ‘hope’ stage of the independent review of children’s social care. In this case, the hope that the review won’t entirely overlook the needs of disabled children and their families. The terms of reference placed the emphasis firmly on child protection and the experience of children in the care system. These are hugely important issues of course, but in no way the entirety of the children’s social care picture.
It looked like the experiences of disabled children – and the extent of their unmet social care needs – would once again be forgotten. Many representations were made to the chair of the review, Josh MacAlister, and his team, emphasising that disabled children are automatically classed as ‘children in need’ under the Children Act 1989, and as such entitled to an assessment of their needs for social care support.
The review team was told that, while local authority resources are not relevant in deciding whether to assess a child, local authorities are permitted to apply their own criteria when it comes to determining eligibility for support. This leads, inevitably, to a situation where a child may be eligible for support in one council area but not another. This is hard to defend, as well as being contrary to the position in adult social care, where the same eligibility criteria must be applied everywhere (though often isn’t)
There has been no shortage of input from families of disabled children, and from organisations that support them, setting out why social care is so important to help disabled children and their families participate in their communities, live ordinary lives and avoid social isolation.
Case for Change in Children’s social care
The review team has now published a report on ‘the case for change’, setting out what they think the biggest problems in children’s social care are and where the solutions might lie.They say there is “an urgent need for a new approach” and aim to produce “a bold set of recommendations that will meaningfully improve things for children and families”.
The report begins by drawing on many people’s feelings of isolation during the Covid-19 pandemic and the development of community support networks as an insight into how young people in care might feel and how communities might step up to support children and families better in the future. (It’s all a bit reminiscent of David Cameron’s ‘big society’ dreams.)
Josh MacAlister writes in the foreword, “The isolation many of us have felt throughout the pandemic is a narrow window into the experiences of young people in care…”
He doesn’t say that it’s also a pretty good window into the isolation felt by many families of disabled children on a pretty much constant basis. From my own perspective, 13 years of being the parent of a child who can’t easily go places – sometimes there’s no wheelchair access, sometimes the world around her is just too overwhelming – was excellent practice for lockdown. As everyone around us was appalled at the tight restrictions on travel and socialising over Christmas, my husband and I looked at each other and said “what’s new”.
Child protection focus
‘The case for change’ is overwhelmingly focused on child protection and children who rely on the care system. When it comes to numbers, it is concerned with Section 47 enquiries, child protection plans, looked-after children.
Questions such as how many requests for social care assessment for disabled children are refused, how many disabled children are assessed and then deemed not eligible for support, how many families provide hundreds of hours of care every week of their lives without breaks, how many disabled children have had their care package reduced, how many families are given direct payments in acknowledgement of their child’s need for support but can’t spend these because there are no services or they can’t find suitable support-workers – ultimately, just how much unmet need is there and what are the effects on children and families? – these questions are un-asked and un-answered.
Disabled children get no mention in the executive summary, or in the chair’s stage-setting foreword. Just when I was beginning to run out of hope, chapter two – titled “We’re not doing enough to help families” – states:
“In the majority of cases, families become involved with children’s social care because they are parenting in conditions of adversity, rather than because they have caused or are likely to cause significant harm to their children.”
This describes very well indeed the situation for many families with a disabled child.
It also says,
“Despite the prevalence of families struggling to manage in conditions of adversity, the system too often focuses its efforts on investigating and assessing parents without providing real help for the family to deal with the problems they are facing…”
That too sounds very familiar to families of disabled children.
An acute problem
The observation that “part of the reason for a lack of support might be because the help which families need…is not available” gets right to the heart of the situation:
“This is an acute problem for the families of disabled children who rely on support delivered by children’s social care, such as short breaks, to manage the pressures which can accompany caring for their child.”
Contact’s 2017 finding that 24% of parent carers provide upwards of 100 hours of care a week is cited.
A hint of promise? Maybe not…
This was beginning to sound quite promising. The review had heard the clear message that “families with disabled children [feel] that they are navigating a system that is set up for childprotection, not support”.
But despair is re-introduced when the report quickly jumps away from the tricky subject of disabled children with unmet needs, citing “the range of work underway in Government looking at provision for children with disabilities, includingthe Department for Education’s (DfE) Review of Special Educational Needs and Disabilities, the National Disability Strategy for Disabled People and the National Autism Strategy. The independent review of children’s social care will continue to work closely with these pieces of work, and we will listen to the views of children and families to explore how we can better support families of disabled children and children with multiple complex needs.”
That sounds like the children’s social care review team sincerely hope that someone else will sort out the problem.
Parents of disabled children get used to being fobbed off by social care. If the review really is, as it describes itself, a once in a generation opportunity to transform the children’s social care system and improve the lives of children and families, there’s no room to get it wrong or to leave out an entire group of children who already miss out on so much already. The next stage of the review will have to do better than this.
‘The case for change’ is open for consultation until 13 August.
- You can access the Case for Change at: https://childrenssocialcare.independent-review.uk/wp-content/uploads/2021/06/case-for-change.pdf
- You can read a summary of the underpinning evidence that informed the Case for Change here: https://childrenssocialcare.independent-review.uk/wp-content/uploads/2021/06/case-for-change-supporting-evidence.pdf
- Find the main website here: https://childrenssocialcare.independent-review.uk/have-your-say-lived-experience/
Also read:
- Challenging opaque, illegal social care plans for disabled adults
- Know your child’s rights to social care support
- Why does Josh’s review seem to think disabled children are “Not Known to Social Care”?
- The Care Act when transitioning from children’s to adult social care
- The worrying trend of social care tactics to target SEND ‘problem parents’
- Should social care assess my daughter as part of the EHC needs assessment?
- Ofsted / CQC: SEND was bad before the pandemic, it’s worse now
- Free course: Speech, Language and Communication Needs (SLCN) in children with mental health difficulties
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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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