Cerebra press release: ‘Institutionalising Parent-carer Blame’ – from UK with international significance

'Disabled children and their families are one of the most severely disadvantaged groups in the UK'

A major research report published today (21 July 2021) finds that most English Children’s Services Authorities operate a ‘one size-fits-all’ approach to families – regardless of whether it is a parent carer seeking support for a disabled child or a family where the evidence suggests there to be neglect or abuse.  The effect of this approach is to create an institutional culture of ‘parent blame’.

The research cites many comments made by parent carers: parents who felt the process to be humiliating’; ‘bullying; ‘devastating’; who likened it to ‘the police turning up at your door and [saying] we’ve got a warrant to search your house’.

In relation to the findings of the report, the Rt. Hon. Sir Edward Davey MP Patron of the Disability Law Service stated:

“I am very concerned to hear of the continued problems with the way many Children’s Services Departments in England are treating parents caring for disabled children: a problem that was highlighted in a Disability Law Service report last year. The current report points to defective Department for Education guidance as a root cause of this problem, which is leading to parents being blamed when they ask for care for their disabled children, instead of receiving the help and support they deserve. I call upon the Education Secretary to address this issue as a matter of urgency”.


The Report’s ‘Key Messages’

  • National and local social care policies in England create a default position for those assessing disabled children, that assumes parental failings. This approach locates the problems associated with a child’s impairment in the family.
  • The national guidance that directs the process by which disabled children are assessed by English Children’s Services Departments (‘Working Together 2018’) is not fit for purpose and arguably unlawful. Its focus is on safeguarding children from parental neglect / abuse and it fails to address the distinct assessment and support needs of disabled children for whom there is no evidence of neglect or abuse.
  • Unlike the national guidance concerning the assessment of disabled adults, ‘Working Together 2018’ contains no requirement that those assessing the needs of disabled children have any disability related expertise, skills or experience.

Of the 143 local authority assessment protocols identified:

  • None contained a clear explanation that a different approach should be taken concerning the assessment of the needs of disabled children where the referral was not accompanied by evidence of neglect or abuse.
  • 80 per cent required the assessor to confirm if the ‘child’s bedroom has been seen’ regardless of whether there was any evidence to suspect that the child was being neglected or abused.
  • 87 per cent referred to the need of seeing (or communicating with) the children alone regardless of whether there was any evidence to suspect that the child was being neglected or abused.
  • None gave guidance to assessors concerning the need for cogent grounds to exist before seeking to see a child’s bedroom or seeking to interview a child in the absence of their parent.


Policies of this nature interfere with the fundamental rights of families to respect for their private and family lives, and their home - and are discriminatory in that they treat disabled people and their families in the same way as people whose circumstances are materially different.

86 per cent of the parent carer-led support groups who responded to the research survey considered the assessment process to be extremely unsatisfactory and intrusive – highlighting:

  • Assessors’ lack of training, experience and understanding concerning the disability related challenges that disabled children and their families encountered.
  • The intimidating nature of the assessment process: a process that focussed on parental ‘fitness’ rather than addressing the additional support needs that resulted from their child’s impairment.
  • The intrusive nature of the process, with families reporting that assessment visits could take place with little (or no) notice and that they were often placed in impossible positions – for example, feeling that they had no real choice about whether the assessor inspected their child’s bedroom and interviewed their children in their absence.

The research report calls on the Department for Education to publish – as a matter of urgency - separate statutory guidance to address the specific needs of disabled children and their families.

The report can be downloaded at https://cerebra.org.uk/download/institutionalising-parent-carer-blame/



The report is based on research undertaken by the Cerebra Legal Entitlements and Problem-solving (LEaP) Project based at the School of Law, Leeds University.

The research involved the analysis of the assessment protocols of 143 English children’s services authorities and a survey of 92 English parent carer-led support organisations.

Cerebra is a national charity helping children with brain conditions and their families to discover a better life together.

Research Lead: Professor Luke Clements, School of Law Leeds University: This email address is being protected from spambots. You need JavaScript enabled to view it. tel: 07802 414 612.

Cerebra: Elaine Collins - This email address is being protected from spambots. You need JavaScript enabled to view it.

Sir Ed Davey’s office: Carey Roach This email address is being protected from spambots. You need JavaScript enabled to view it.

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