Tag Archives: Autism

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”

Why we’re still nowhere on getting autistics out of Assessment and Treatment Units and back into the community (2)

Placements are often justified on the grounds that behaviour which challenges needs to be addressed before community living is possible. But for many autistics this is backwards! Behaviour is communicative. Common causes of behaviour which challenges, in autism, are frustration and distress, due to difficulties with:
• communication
• uncertainty and unpredictability
• sensory issues

Most staff working in care have had little or no good quality autism training. “Behaviour management” typically focusses on reactive management and restraint techniques! It is little wonder that autistics stuck in these situations display distress in such an adverse environment. In institutions individuals are typically subjected to:
• change with little or no warning
• little control over their environment
• a highly unsuitable sensory environment
• constant interaction and demands
• very limited access to people with whom they can communicate effectively (e.g. family) or appropriate support for communication (e.g. AAC technology)
It is hardly surprising if this results in behaviour which challenges.

Effective training of community-based staff to enable them to actually understand and anticipate an autistic perspective is essential. We need to move away from ineffective and damaging “reward and sanction” reactive approaches to behaviour management. Creating workable community support is possible. It isn’t always cheaper immediately, but it is in the long run and this should be very motivating to local authorities and trusts. A good starting point is to look for providers who take an autistic perspective seriously and make use of the autistic community as a source of knowledge about how seeing the world from an autistic point of view can help enormously. Most behaviour which challenges can be prevented and avoided – but institutions are completely the wrong place to do it.

Community provision can work but only if it is staffed by sufficiently well trained and supported staff who have a clear and deep understanding of autism on a practical level. “Awareness” courses are not enough. Learning about the triad of impairments is not much use when faced with a distressed autistic who can’t use speech to tell you what’s wrong. The latest “products” on sale from the autism industry are also of very dubious value – check out first whether they are really as evidence based as they sound – there is a lot of “neuro”-rubbish being talked out there. Exercises to retrain developmentally immature reflexes are little help when faced with an autistic adult head-banging to the point of bleeding. Creating an autistic friendly environment, addressing communication, autonomy and sensory needs can be a good start to proactive behaviour management. But community staff need to have confidence in their skills and knowledge to be able to do that. It isn’t going to happen more widely until the entire social care sector begins to learn enough about autism to really understand that autism is a fundamentally different way of being and approach the needs of autistics with fewer assumptions and an openness to those different ways of thinking and being.

I’m aware of a few providers doing some fine work in this area, but we need more. We also need more willingness from local authorities to think outside of the box and consider bespoke packages with sufficient funding and support for training to ensure good quality PAs equipped with real world autism skills.

Why we’re still nowhere on getting autistics out of Assessment and Treatment Units and back into the community (1)

Welcome to my new guest blog on Belinda Schwehr’s ‘Schwehr on CARE’ and thanks to Belinda for inviting me.

I have to focus my first posts on what I see as the most pressing human rights issue in social care: the approximately 3,000 individuals (many and perhaps most of them autistic) still stuck inappropriately in long-stay inpatient care 4 years after Winterbourne View.

The Justice for LB campaign is seeking further legislation in an attempt to resolve the issue. Whilst I wholeheartedly support their aims, I can’t see the approach of passing more legislation working. Here’s why. We already have law which addresses many of the issues, but it is simply being ignored.

(1) There is still widespread failure properly to implement the Mental Capacity Act. Capacity is frequently assessed wrongly because:
(a) unwise decisions made by someone with a learning disability or autism are used as a basis to assume or evidence lack of capacity;
(b) insufficient information and support are provided. All practicable steps to help the individual make the decision themselves are not actually taken. This is particularly true in autism, where it is often due to ignorance of steps which could help;
(c) incapacity is assumed, based on one-off assessments, sometimes years previously;
(d) incapacity is assumed for one decision on the basis of incapacity in relation to another very different type of decision, without proper analysis of similarities or otherwise;
(e) assessments are too often based on the outcome of language-based IQ tests and in ignorance of the evidence that these may well not be a reliable approach to measuring cognitive ability in autistics.

(2) The Care Act already provides strong rights to be involved for adults themselves and for family (either in the form of those the adult asks to be involved or in the form of best interests consultees). There are rights to communication support/interpreters and provision for this to be a familiar person where this is the only way to achieve communication in the case of bespoke methods of communication (including behaviour only). The statutory advocacy duties are right there and properly qualified, independent advocates are the best possible support that people could have. So what’s the problem?

In far too many areas it just isn’t being implemented. It’s hard not to conclude that either local authorities are (a) ignorant of the law; or (b) simply hoping like mad that nobody else noticed.
What can we do about it?

(1) Know the law and push for independent advocacy when someone is entitled to it. Councils cannot lawfully assume that family members are suitable informal supporters and use their presence to avoid providing an independent advocate UNLESS both the adult needing support AND the family member CONSENT. Nor can they avoid advocacy by using family members or friends as informal support without THINKING about whether the informal person is actually able to carry out the role of supporting the adult’s involvement appropriately.

(2) Know the law and push for the provision of a communication specialist (as WELL as an advocate) where an individual communicates in a way that the assessor does not understand. This means those who communicate only through their behaviour, those who have echolalia, those who use PECS, AAC or bespoke systems. And THIS MEANS adults who may lack capacity – they have a legal right to be heard and to be involved too!

(3) Know the law and push for PROPER capacity assessments: decision specific and with all practicable assistance, including communication support, full information about all options and processing time.

(4) Know the law and push for fully lawful decision making where someone does lack capacity – in full compliance with the MCA. IMCAs, DOLS, best interests consultees (including family members and providers), proper respect for human rights and all the principles.

Thoughts on the Cornwall Judgment

Having been wrestling with practitioners’ bemused questions about the state of play on Ordinary Residence over the past few months, I share Belinda’s relief at the common sense shown by the Supreme Court in finding Wiltshire liable.

This clarifies the situation in several ways which I think local authorities should find helpful in working out the liable council. As anyone who has been to CHL training will know, Annex H of the Care Act Guidance says that local authorities should:
“start from a preliminary assumption that the young person remains ordinarily resident in the local authority in which the child was ordinarily resident when they turned 18.”

The decision helpfully clarifies that that starting assumption cannot be too readily displaced in the case of a young person who lacks the capacity to decide their own residence.

The Supreme Court has helpfully confirmed that:
(1) An area cannot be someone’s ‘base’ without factoring in whether they do or have ever actually lived there
(2) Ordinary Residence cannot be based on the residence of a decision maker (parent or deputy) rather than the subject themselves
And also sorted out that for those who lack capacity to make residence decisions:
(3) Periods of out of area placement whilst a child are not enough by themselves to change ordinary residence, even where these are prolonged

Those of us who have spent months wrapping our brains around these issues are relieved by the clarity and coherence of this position. In many cases councils will find it easier to recognise when they should simply accept that they are responsible (though it remains to be seen whether all will do so in practice!). Councils and providers can heave huge sighs of relief and hopefully develop high quality, community based care, appropriate to the needs of individuals without fear of ‘dumping’.

This decision is hugely in the interests of young people who lack such capacity (many of them autistic). The clarity thus provided should cause local authorities who have such young people in their care to finally accept that they are, in most cases, going to continue to be responsible for them throughout their lives and to focus on the suitability of placements, rather than on which side of geographical borders they lie. It should very much improve transition planning for these young people – the fractured and frequently argumentative nature of which has often been a cause for concern.

The young people at the heart of these cases are not just costly burdens to be looked to for arbitrary savings in council budgets. They are people, not packages or exports to be fought over. I fear there are still O/R battles which remain to be fought through the courts, as Belinda highlights. But at least the outcome from this one is legally coherent and clear enough to sound a warning to councils about legally and ethically dubious attempts to export young people viewed as too costly.