AUTISM RIGHTS GROUP HIGHLAND
19 OCTOBER 2023
Zoom 19.30 pm
The Scott Review, Autistic People and the Mental Welfare Commission
Hello everyone
It is lovely to be back with you again, it is years since I was last with you, which is a pity as I always loved coming to your meetings. Even more of a pity is the fact that I am only just back from Highland – I would have so much preferred to speak with you face to face.
XXXX has asked me to talk about why the Scott Review seemed to be so different to the Rome review –around things like supported decision making, classification of autism under ‘mental disorder’. I will do my best to do that but with a slight not very good caveat.
I was joint vice chair of the Scott review so should know it in great detail but first of all I was in that position as an individual – it had nothing to do with my job at the Mental Welfare Commission and so I have not really had any opportunity to do anything about the Scott review since we issued our report over a year ago and am sorry to say this means, apart from the workstream I was responsible for, have forgotten huge swathes of the what we said at the time. I have also been really busy since XXX asked me to speak with you and so have not been able to go back to our original report. But I have talked to Colin Mckay and Jill Stavert who were key to much of what we did and will do my best to give my answer to XXX’s question. What I say does not represent the views of the Commission or of the Scott review as the Scott review no longer exists in any formal sense and I am speaking about issues we were discussing separate to my work with the Mental Welfare Commission.
Having said that I will do my best to give some thoughts and also, when I finish, will mention some of the work I am doing in the Mental Welfare Commission.
First of all I am not sure that the actions proposed by the Scott review is fundamentally different to the Rome review but its scope was much wider than the Rome review.
What we ended up concluding was so much wider than questions of detention and coercive treatment and covered the adults with incapacity act, the vulnerable adults act and also our cultural economic and social rights and I think this may help explain why we included people with Autism and Learning Disabilities in our recommendations.
The most fundamental change is that we proposed that everyone covered by current legislation should have a right to human rights enablement if they were in contact with services or likely to be, whether or not they are detained. If this is ever put into legislation it will make a huge difference to people’s lives. Currently our legislation is about intervention and our rights when we lose capacity or decision making ability but what we are looking at is the vast range of rights that will apply to us if our economic cultural and social rights are put into domestic law as the government is proposing to do.
When I say cultural economic and social rights I mean our rights to housing, health, education, welfare benefits and so on. Our right to participate in society and to live independent lives – all the bits that tend to add up to the lives we want to have and which so many of us do not have at present.
So if we are looking at someone’s life rather than looking at compulsory treatment or medication we would also look at all the other elements of our lives; it may be that we have become depressed because of our housing, which may not be suitable for us. This could be because it is damp and cold but it could also be because it is not suited to, in my case, what I might call my impairment; so it might be far too noisy and busy for my mental health. The fact that I might be depressed might lead to talking treatments and medication but under human rights enablement it might also lead to a change in my accommodation because I have a right to suitable housing that respects my condition and what might make the most difference is changing the conditions of my housing which might be the main thing that is making me depressed. The same applies to all the other things which affect our wellbeing and health and lives.
This, to our mind, is a hugely positive move. I am so sorry that I do not know how you refer to the life circumstances you have as autistic people and that you would maybe not refer to the particular needs you have as a response to impairment but I do know that you expect society to adapt to and adjust to what life is like if you are autistic. To respect your needs if you are in education or employment; if you are parents or seeking appropriate health care or anything else that goes along with living your life that acknowledges the reality of living an autistic life is exactly what human rights enablement is about. Nothing to do with compulsory treatment and everything to do with making sure that you have the right sort of health care, housing, employment, education and so on. To exclude the autistic and learning disabled community from this possibility would, to us, have seemed a terrible move – you would have been possibly denied the very rights we were saying everyone else with a mental disability should have and which I think you as communities have been pressing for, for years.
However, it is slightly more complicated than this. While we see future legislation being all about enshrining the rights anyone with a mental disability should have, we are also aware that there will still continue to be elements of coercion in the lives of a small number of us and know that the United Nations Committee on the Rights of Disabled People say that compulsory treatment should not be carried out on the basis of disability.
We have followed this line too – we do think there are situations where we need to intervene to save people with a mental disability from harm or death or exploitation and also to save other people from the actions we may carry out on occasion. We do think that one of the justifications for this is should be on the grounds that we cannot make the decisions we would normally make.
However, to some extent, we have tried to make the grounds for intervention disability neutral – fundamental for intervention against someone’s will is our idea that sometimes some people make decisions that are not their authentic decision. In other words we sometimes make decisions that in everyday life we would not normally make. So sometimes, in some, circumstances people make decisions that are not really theirs and which they might regret later on in life. In my case I might make decisions to end my life when I am convinced I am a devil and causing untold harm to the world and those I love. I can see why we might intervene in this case. As a result we have proposed an Autonomous Decision Making test, that might sometimes lead to intervention although it would be carried out alongside supported decision making and the human rights enablement and does not automatically lead to compulsory treatment but might do when there is no other alternative.
However although an impairment due to mental disability would often trigger the reason to intervene, we also thought there are possibly other situations where anyone would make decisions where intervention might be justified which have nothing to do with our ability to make decisions because we have a mental illness or autism or learning disability. This might mean that one day the legislation we are proposing applies to everyone rather than those who are seen as mentally disabled.
For instance I imagine that someone is not really making an authentic decision when they are being coercively controlled by someone who is abusing them and yet they appear to agree with what they are being coerced to do or someone may not be making an authentic decision when they are being trafficked by other people and coerced into certain actions or someone may not be making an authentic decision when the influence of the drugs they are taking causes them to commit offenses they would never normally do.
In many ways we are beginning to contemplate a widening of legislation in the future to cover anyone whose decision making is impaired whether they have a disability or not and in an almost contrary sense trying to make sure that everyone who comes under the general definition of mental disability has access to all the rights they should do and which so many of us do not have in reality.
The last thing that I can think of us is the position of some people who often have both learning disabilities and Autism and mental illness, who can spend years and years in specialist hospital and other accommodation – we agree that this is very often inappropriate but do not necessarily think that excluding people with autism from the mental health act will necessarily be a solution to this.
In the Scott review we call for more rights to challenge inappropriate restrictions on people and of course the human rights enablement would look at all the other rights that come with that sort of restriction but just removing people from the act could possibly just lead to them being dealt with under the adults with incapacity legislation instead where people have even less protections than under the current mental health act.
I think, though I may be wrong, that both the Rome review and the Scott review have tried to reach similar goals but we have reached different conclusions, perhaps because of our different remits. As I was talking to Colin Mackay, he suggested that maybe as the landscape has changed dramatically since even the Scott review was published we should look at what the actual differences are that we want when approaching the new legislation for your community – what is it that you would actually like to see? Although I am sure you have already thoroughly briefed the team dealing with new legislation already. I would love to know what you have said and are saying.
I am going to spend a short time before we have any discussion by talking on what we are doing in the Commission and on the role of our new neurodiversity engagement officer.
I am not going to go into detail about what the Commission is as I have said it lots of times before – but if there are people new to ARGH who know very little about what we get up to I am happy to explain later.
In the Engagement department we are keen to hear the voices of as many people as we can. We have not done as well as we would like in contacting the Autistic Community but I have loved hearing from you in your meetings over the last few years and what you have told me has been extremely helpful.
As most of you know I have a diagnosis of Schizophrenia and most of my work in the past has been about the voice of people with experience of mental ill health, nowadays my main remit is around people with lived experience of mental illness. However we now have a new permanent engagement worker whose job is to work with people who are seen as neurodivergent or see themselves in this way. That person is Andrew Jarvie. Some of you may know him as he is also a local councillor up here in Inverness. He has lived experience of neurodivergence and I am sure would love to meet some of you – if you want me to put him in touch with you please do let me know.
Part of our job is to find out the experiences of people across the country around the issues that are affecting them. A new way in which we have started to do this is to concentrate on one health board area at a time to find out the issues from people with lived experience, their friends and family and others. Then turn these issues into a report with recommendations and work with local partners to help the health board concerned listen to and respond to what people are saying.
Our pilot area is the Western isles – we have an initial report which should have been sent the local health board by now. Hopefully from there we can work with local agencies to make a difference.
We are currently working with people across Argyll and I have started working with people in Highland too.
I know you have told me a wide range of issues affecting autistic people in Highland in the past but if we run out of things to talk about following the earlier part of my talk I would love it if you could let me know the key things that are happening with your community in the Highlands, the good, the bad, the in-between. Anything really!!
Thanks so much