Guest Posts, SEND & Health Research, special needs

Autistic children unlawfully denied care assessments: Your parent carer group can help further research

with Professor Luke Clements and Dr Ana Laura Aiello

Has your autistic child had a social care assessment of their needs? Either from the disabled children's team or as part of an EHC needs assessment? I'm betting the answer for most is 'no'.

We tried, during the EHC transition process, several times, but despite my youngest having autism, ADD and Ehlers Danlos syndrome, we were refused, despite this being unlawful. Many requests simply come back, "Not known to service" - in other words, if they are not already under a social worker, they're not interested. Other parents are threatened with "social services" taking an undue interest in them.

New research has shown the practice seems particularly prevalent when it comes to children with autism, with council policies setting the bar far higher than is required by law. A report by a team led by Luke Clements, Cerebra Professor of Law & Social Justice at University of Leeds School of Law, has found many councils are doing this, which is something that we hope Ofsted is taking notice of when it resumes SEND area inspections. It's certainly something we'll be raising with them to ensure it is an area for investigation.

Today, Professor Clements and Dr Ana Laura Aiello, study authors, are here on SNJ to talk about this and to seek help for a second phase of this research from independent parent-carer groups, and other user-led groups (rather than individuals) - but you only have until the end of August, so don't delay.

Unlawful Autism Plus policies - can your group help further research?

by Professor Luke Clements and Dr Ana Laura Aiello

More than a quarter of English children’s services councils are acting unlawfully by discriminating against children with autism.  Research (pdf) undertaken by the School of Law at the University of Leeds, the Disability Law Service, Cerebra and the BBC found that 41 of 149 English children’s services authorities have policies that restricted the rights of disabled children with autism to Disabled Children Assessments.

The initial scoping report on the prevalence of such policies indicated that these also existed in Wales.  However, for methodological reasons the research focussed on English authorities.

Typically, these policies stated that no such assessments could be provided unless the child with autism also had severe learning disabilities or challenging behaviour and there was often an additional requirement that the child have a formal diagnosis of autism.  Requirements of this kind did not apply to any other impairments or conditions.

The requirement for ‘severe learning disabilities’ and/ or ‘challenging behaviour’

Many young people with autism don’t have ‘seriously challenging behaviour’ or a ‘learning disability’ but may (for example) have significant sensory impairments that result in them becoming withdrawn, highly anxious and / or isolated.   The insertion of additional non-statutory barriers that impede access to assessment and support rights under the Chronically Sick and Disabled Persons Act 1970 and the Children Act 1989, is adverse treatment – for which it is difficult to envisage a justification. Requirements of this kind amount to indirect discrimination contrary to the Equality Act 2010 on the grounds of disability. 

Available evidence indicates that the provision of early support for children and young people with autism ‘can make a massive difference to people’s life chances’ and that providing appropriate support can save money in the wider public sector. In 2009, the National Audit Office estimated that even a modest increase in the provision of support to people with autism had the potential to save the public purse £67 million per annum.

The requirement of a ‘diagnosis’

Policies of this nature not only insert an additional (unlawful) non-statutory condition that disabled children with autism have to satisfy before they can access their statutory rights under the Chronically Sick and Disabled Persons Act 1970 and the Children Act 1989, they are also unlawful in themselves, as both these Acts have non-medical ‘disability’ focused definitions.  Such policies also constitute unlawful sex discrimination, as far more young men are diagnosed with autism than young women and there is no clear consensus as to why this may be.

There is widespread concern about the lengthy delay many families encounter in obtaining an autism diagnosis for their child, as well as dissatisfaction with the actual diagnosis process. A 2018 Parliamentary report identified delays of up to four years in several parts of England – a situation it described as ‘scandalous’. In 2019, the British Medical Association referred to the ‘alarming’ impact that a delayed diagnosis can have on a child’s educational and mental health, as well as the consequential harm on their family, and called for urgent Governmental action to address this problem.

Wider issues

Local authorities are under a duty to publish their eligibility criteria for disabled children’s assessment and support services as part of their ‘local offer’.  In many cases the relevant criteria were not accessible, and in many cases they were only identified after a prolonged period of searching or the use of information gained was from Freedom of Information requests.  In relation to over a third of the 149 local authorities studied, the criteria proved to be: either inaccessible or so unfit for purpose as to be incapable of constituting ‘lawful’ eligibility criteria.

Next steps - can you help?

Letters will now be sent to each of the 41 English children’s services authorities that have policies of this nature asking that they take urgent action to remove these restrictions. The Equality and Human Rights Commission has expressed concern about the impact of ‘autism plus’ policies of this kind and has specifically asked that Sir Ed Davey keep them updated about the responses provided by these authorities.

The research report also highlights the possibility of test case litigation and a ‘default’ action against the Secretary of State Health and Social Care if he fails to take action to address the problems highlighted in the report.

The School of Law at the University of Leeds, the Disability Law Service, Cerebra and the BBC are planning a second phase to the research.  This is a qualitative study of the impact on families when their child is denied a disabled children’s assessment by the Disabled Children’s team as well as the experiences of these families with the assessments that are actually performed.   For methodological reasons, the research survey is seeking the views of genuinely independent parent-carer led support groups (rather than individuals).  

The survey can be accessed at https://www.surveymonkey.co.uk/r/GGNH72W - PLEASE encourage any independent parent-carer led support groups you are in or with whom you have contact, to complete the survey.  The deadline for submissions is the end of August. 

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Tania Tirraoro
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