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.