and Dr Ana Laura Aiello
Disabled children and their families are one of the world’s most severely disadvantaged groups and the UK is no exception.
Why should this be – when in theory UK law provides such families with good quality rights to support services and when these rights are backed up by powerful international human rights provisions? And why, when a parent of a disabled child approaches an English social services authority for support is the experience so often so negative?
These are some of the questions we tried to answer in our research report ‘Institutionalising parent carer blame. The experiences of families with disabled children in their interactions with English local authority children’s services departments’’.
Intrusive assessments
The research included a survey of parent carer-led support groups. It found that 86% of those who responded considered the assessment process that parents and their disabled children experienced to be extremely unsatisfactory and intrusive.
The responses mentioned, for example, the intimidating and intrusive nature of the assessment process: a process that focussed on safeguarding / child protection matters and parental ‘fitness’ rather than addressing the additional support needs that resulted from their child’s impairment. Many referred to the fact that assessment visits could take place with little (or no) notice and that they were often placed in impossible positions, for example, feeling they had no real choice about whether the assessor inspected their child’s bedroom and interviewed their children in their absence. Parent carers' comments referred to the process as ‘humiliating’; ‘bullying; ‘devastating’; and likened it to ‘the police turning up at your door and [saying] we’ve got a warrant to search your house’.
Human rights abuse
What is so troubling about the research findings is that many children’s services assessors did not appear to understand that actions of this kind interfered with the fundamental human rights of families to their privacy, their right to respect for their family life and for their home. Somehow it appears that it is now ‘normal’ for many social services authorities to require their assessors to behave in this way.
Social services have a legal duty to provide support for disabled children and their families. Legally, if an authority wants to interview a child in the absence of their parents or wants to inspect their bedrooms, it has to have substantial evidence to justify doing this, e.g, because it has credible evidence that the child is being abused or neglected.
It is simply unacceptable for authorities to operate a ‘one-size-fits-all’ approach to families, regardless of whether it is a parent-carer seeking support for a disabled child, or perhaps a parent reasonably suspected of child neglect or abuse. Unfortunately, the research found that this was exactly what was happening – and it is this that creates an institutional culture of ‘parent carer blame’.
Unlawful assessment protocols
In addition to our survey of English parent carer-led support organisations, we analysed 143 local authority ‘assessment protocols’ and found that:
- 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% 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% 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 credible grounds to exist before seeking to see a child’s bedroom or to interview a child in the absence of their parent;
- Only 5 (3%) included a reference to their authority’s duty to offer parent carers a ‘needs assessment’.
Legally, as the report explains, policies of this kind are discriminatory. They treat people who are quite different in the same way. They treat families suspected of child neglect/abuse in the same way as families simply seeking support to overcome the barriers they encounter because they have a disabled child.
The Department for Education bears some responsibility for parent carer blaming
Although authorities have to accept substantial responsibility for the deeply unpleasant ‘parent carer blame’ organisational cultures that many have fostered, the finger of blame also points strongly in the direction of the Department for Education and the guidance it has published – namely ‘Working Together 2018’.
Although this guidance purports to explain how all ‘children in need’ (including disabled children) should be assessed, it is overwhelmingly focused on child abuse and neglect. Good guidance used to exist concerning the different assessment needs of disabled children and their families, but this was withdrawn in 2013.
The report calls for urgent change and for guidance that is specifically directed at the needs of disabled children and their families. This guidance needs to (among other things) require assessors to have training and experience, not only in the needs of disabled children and their families, but also in relation to what is and what is not acceptable behaviour under human rights law.
The report results from research undertaken by the Legal Entitlements & Problem-Solving (LEaP) Project at the School of Law, Leeds University funded by the disabled children’s charity Cerebra. The research report (and this article) was written by Professor Luke Clements and Dr Ana Laura Aiello and the report can be downloaded at https://cerebra.org.uk/download/institutionalising-parent-carer-blame/.
Also read:
- Children’s Social Care Review: Are disabled children ‘someone else’s’ problem?
- Children with SEND and the emotional impact on parents
- Know your child’s rights to social care support
- Challenging opaque, illegal social care plans for disabled adults
- 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?
- Teaching social context to children with autism and why it’s vital for safeguarding
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Luke is also a solicitor with Scott-Moncrieff & Associates Ltd. He has had conduct of many cases before the European Commission and Court of Human Rights.In 1996 he was the solicitor who took the first Roma case to reach the Strasbourg Court Buckley v. UK (1996)
Luke’s academic research and litigation experience is primarily concerned with the rights of people who experience social exclusion, including disabled people and their carers.
He has helped draft and promote a number of Parliamentary Bills aimed at improving the rights of people experiencing social exclusion – including Bills that became the Carers (Recognition and Services) Act 1995 and the Carers (Equal Opportunities) Act 2004.
Luke’s Chair in Law is funded by the disabled children’s charity Cerebra
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