Who are people with a learning disability and/or autism?

Who are “people with a learning disability and/or autism”?

The National Implementation Plan for Transforming Care, published recently, raises more questions than it answers about how the good intentions about closing hospital beds and improving community provision are going to be brought about in the real world. The jazzy PCP diagrams, co-produced “National Service Model” and graphs projecting falling inpatient numbers are aspirational, yes. But are they really going to produce change?

It seems to me that the key is whether community provision can be sufficiently improved to prevent admissions in the first place (as well as providing a viable discharge plan for those already there). So what’s the plan?

Mostly it seems to be founded on the solid ground of Positive Behaviour Support.

So long as this is truly rights-based and well implemented so far, so good.

But there, unfortunately, the good news comes to an abrupt end. Because all this good work is aimed at meeting the needs of “people with a learning disability and/or autism”. This term is used, without variation, throughout the report.

The report argues that “people with a learning disability and/or autism” are a “highly heterogeneous group” and that “Some will have a mental health problem which may result in them displaying behaviour that challenges. Some, often with severe learning disabilities, will display self-injurious or aggressive behaviour unrelated to any mental health condition. Some will display behaviour which can lead to contact with the criminal justice system.”

But never, not once, are autistic individuals referred to separately and distinctly. At no point is it considered which, if any, of the described issues or behaviours might be directly or indirectly related to autism itself and the relevance of that to effective behavioural prevention/management. At no point are autism and intellectual disability disentangled or dealt with separately.

Of course they can and do co-occur. But the behavioural issues which underlie the presence of these individuals in overly restrictive settings do not occur independently of whether or not an individual is autistic. Behaviour is communication. And autistic people communicate very differently.

It seems to me that no amount of person-centredness or positive approaches to behaviour are likely to make sustainable difference on the ground unless they are accompanied by vastly improved autism knowledge and understanding amongst those supporting those autistic individuals who make up a very substantial percentage of this group.

What percentage I hear you ask? I can’t tell you, because the statistics only count … yes, you guessed it … “people with a learning disability and/or autism”

Yo Dunn

About Yo Dunn

Yo blogs about social care, law and autism. She is a trainer and consultant who works across the public sector (primarily in social care and education), specialising in autism, legal frameworks and intersecting areas. More information at: www.consultyo.com and www.linkedin.com/pub/yo-dunn/3b/a6b/284. Yo has an academic background in social policy analysis and her doctorate is in educational research. She is autistic and a self-confessed legal geek. She is an experienced and well-reviewed public speaker and deeply involved in the adult autistic self-advocate community.

4 thoughts on “Who are people with a learning disability and/or autism?”

  1. londonboy

    This is a great website and I’m delighted to have found it.
    My son in autistic (without an intellectual disability) and was in care as a looked after child. He has PDA and does not accept he is autistic and will not meet any of his family including extended family. This makes him very difficult to help or even protect.
    He is now a former looked after child aged 18. What I experienced as the parent of a neuro-developmentally disabled child in the Care system profoundly shocked me, awareness about his needs was so low. His local authority have put it in writing the they have no’ preventative duty’ in Pathways Planning. Are these children excluded from The Care Act, Autism Act etc by virtue of the Statutory Guidance of the Children’s Act 1989 updated in Jan 2015 as ‘there is no preventative duty set out within that guidance’?
    I’ve asked this question of the Dept of Education looked after children team without a response.
    Do you have any answer to this?
    Also can Autism strategies be challenged if they do not make reference to former looked after children who may not have the protection of a loving caring family. How can the lack of provision be challenged?
    Please do not print my email address to protect my son’s privacy.

    1. Belinda SchwehrBelinda Schwehr

      My mind is boggling here. Are you asking whether someone can be excluded from all the rights in the Care Act just because the Children Act does not provide for a preventative duty? If so, the answer is that you are looking to the wrong body. Now your son is 18, his rights are for Adult Services, and the Children Act only has any relevance to him because Children’s Services and Adults’ Services have not yet agreed the handing over of responsibility. He needs an advocate, under the Independent Advocacy Provisions of the Care Act, (because he will not consent to you supporting him through assessment and care planning, I am inferring from what you say?) and he needs an adults’ assessment, under the Care Act, where there is most definitely a duty to focus on prevention and reduction first. I really hope that this helps you on the way to getting him his due as an adult.

      Duties owed to Looked After Children are not adult services, please note. They are the responsibility of the Children’s team, in parallel to Care Act services, and they are to cover the sort of thing that a young person might hope for from a family on reaching adulthood. Any Autism Strategy should involve co-operation between children and adults’ services because of the timing for transition and the likelihood that many children with or without a formal diagnosis, will count as Looked After Children, by virtue of having been accommodated or in care as a child.

  2. Confused

    I have been reading about the various ways in which policy has been used to create particular ‘categories’ of people to facilitate their governance and came across your site when I too was wondering why all of a sudden people with a diagnosis of learning disability and people with a diagnosis of ASC were lumped together like this. I understand that the drive for all the new legislation was the Winterbourne scandal, but who decided this was the best way of addressing the ‘problems’? And why is no one else (that I could find, anyway) questioning this conflation of autism with intellectual disability (and of course the problem of legislating for both ‘challenging behaviour’ and ‘mental illness’ as though they are the same thing)??? Are you aware of any research that looks into this new ‘trend’? I really wish it was service users / those diagnosed who made (or rather, un-made..) legislation, rather than people who are already empowered by existing systems and frameworks…

    1. Belinda SchwehrBelinda Schwehr

      I think that the Care Act wording overall, might have been expected to have lessened the tendency for the natural and sensible grouping of staff with a particular client group expertise, then leading inevitably and unfortunately, to silos for ‘this’ sort of client, or ‘that’ sort of client…because it got rid of any ‘threshold’ criteria for qualifying which referred to any age, (other than 18), disability, or ‘status’. But in the real world, those groupings have persisted and the arrangements within councils and CCGs still seem to determine expectations for who qualifies for what.

      The practical reason, I think, for the alignment of people with learning disabilities and those with autism related issues, was because places like Winterbourne View and Assessment and Treatment Units in general had a clientele with one thing in common – the need for the management of very challenging behaviour for the sake of the clients and for others – and because BOTH of those sources of difficulty mentioned can and do give rise to that sort of care and support (and CHC status) issue, for different reasons (lack of absorption, retaining, understanding or insight, or communication difficulties in the case of some severe learning disability clients, and sometimes lack of ability to weigh information up and down due to rigidity or entrenchment and/or communication difficulties, in the case of autism clients).

      Also, both sets of people can end up sectioned, or start and remain in situ in such settings, as ‘voluntary’ patients, on paper. In real life, given the paucity of available services out there, to enable people to re-enter the community, they are harder to care plan for. So once Winterbourne View had hit the news, the powers that be seem to have decided that a project and a lot of project managers were needed to solve that problem….

      In my view, anyone in an assessment and treatment unit is either entitled to s117 services or a proper package of appropriate adult social care and/or some or a lot of NHS directly commissioned input. The budget is not able to be capped, in legal terms, if there IS a willing and able provider to meet need. I think that that is the legally most dangerous fact for the powers that be.

      If one knows some law, one would have to ask WHY is nobody bringing judicial review proceedings in relation to the speed or grasp of s117 or ordinary Care Act care planning for these people, instead of everyone going to endless ‘Care and Treatment Reviews’ and waiting and waiting and waiting, when the problem is clearly a commissioning problem: the rate at which care is being sought.

      To my mind, those who lived and made their names through faith in the notion of a mixed economy of care leading to a successful functioning market for health and social care commissioners, need to put their money where their policy mouths have been for years, and simply pay the going rate. Clients due their ‘freedom’ in the community should be using law and legal principles to hold commissioners to account, for the absence of appropriate care providers or care settings.

      I think that those people who would be regarded as high or very high functioning autistic clients would not have been so likely to have landed up in such settings. I know that the concept of ‘mental disorder’, rather than ‘mental illness’ in the mental health legislation is now wide enough to cover people with autism. But in the Care Act, the wording of physical or mental ‘impairment or illness’ is used as part of the qualifying criteria. I think it would have been better to use the word ‘disorder’ or ‘condition’, but at least it means that people with autistic spectrum ‘disorder’ are able to qualify for Care Act services.

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