Learning disability and autism provision in the Mental Health (Scotland) Act 2003: findings from a scoping exercise

3. Views on the scope of the review

3.1 This chapter discusses participants' views about the scope of the review. Following on from the recommendations of the Millan Review (see paragraph 1.6 above), the survey asked three questions in relation to the scope of the review. These same questions were also put to all interviewees:

• To what extent are the suggestions made by Millan still relevant now?
• Are there any other issues the review should look at?
• Are there any issues that the review should NOT look at?

3.2 The main points raised by participants in relation to each of these questions are discussed below.

Need for the review

3.3 There was near unanimous agreement among survey respondents and interviewees about the need for a review of the 2003 Act as it concerns people with learning disabilities and autism. Moreover, the recommendations of the Millan Review were largely seen as still relevant.

3.4 People highlighted examples of inconsistent and (in the views of some) inappropriate application of the law in relation to these groups, and they voiced concerns about the increasing use of compulsory measures, and the duration of detentions for people with learning disabilities as compared to other groups detained under the 2003 Act. A specific concern was raised about compulsory treatment involving the use of psychotropic medication for people with autism.

3.5 There were also positive reasons given for having a review at this time - specifically:

• The review would offer an opportunity to ensure that mental health law in Scotland (and the treatment of people with learning disabilities and autism in particular) is consistent with international human rights law and the new benchmark provided by the United Nations Convention on the Rights of Persons with Disabilities ( UNCRPD) ^[7] and
• The review would, potentially, provide the catalyst for a wider review of legislation concerning vulnerable adults and people who may lack the capacity to make decisions for themselves.

3.6 Most of the interviewees were aware of the arguments given by some organisations for removing learning disability from the 2003 Act. At the same time, it was noted that if learning disability and autism were removed from the 2003 Act, the number of people who would be directly affected by this change would be very small when compared to the total number of people with these conditions known to services. (See Box 1 below.) The point was made that these individuals were not subject to compulsory measures simply because they had a learning disability. Rather these individuals were likely to have complex and multiple care needs, communication difficulties, and a degree of risk (to themselves or others) which led to their detention in hospital.

Box 1: Number of people with learning disabilities and autism subject to compulsory measures

The last learning disability census carried out by the Mental Welfare Commission found that, in 2012, there were 351 people with a diagnosis of learning disability who were subject to some form of compulsory order under the 2003 Act. Of these, 88 also had a diagnosis of autistic spectrum disorder recorded on their forms. [1]

More recent statistics published by the Mental Welfare Commission for 2015/16 showed that, of the 4,098 Short Term Detention Certificates issued in that one year period, 190 (5%) related to individuals with a learning disability, and 41 (just 1%) had a diagnosis of only learning disability. [2]

In addition, research carried out for the Mental Welfare Commission in 2015 found that 260 people with a learning disability diagnosis were subject to a compulsory treatment order on a single (census) date in August 2015. Of these, 83 had a learning disability with no additional diagnosis of mental illness or personality disorder. [Unpublished research]

These figures can be compared to statistics published by the Scottish Commission for Learning Disability which showed that, in 2015, there were 27,218 adults (over 16) with learning disabilities and 4,617 adults on the autism spectrum known to local authorities across Scotland. [3]

References:

[1] http://www.mwcscot.org.uk/media/139675/ld_census_2012.pdf

[2] www.mwcscot.org.uk/media/342871/mha_monitoring_report_to_omg_on_2_aug_2016_-_final_ab_19_sept_16_jw_26.09.pdf

[3] http://www.scld.org.uk/wp-content/uploads/2016/08/2015-Learning-Disability-Statistics-Scotland-report-1.pdf

Treating learning disability and autism separately

3.7 Participants acknowledged that there is some overlap between learning disability and autism. However, they emphasised that the review should not conflate the two conditions. They argued that the needs of individuals with these two conditions are different, and the most appropriate response to those separate needs (legislative or otherwise) is also likely to be different.

The experiences of people who have been detained

3.8 People thought that it was crucial that the review explore in detail the experiences of people with learning disabilities and autism who have been detained under the 2003 Act. Interviewees suggested that the review should gather evidence about a representative sample of these cases to ascertain:

• The factors leading to their detention in hospital
• Whether they could be cared for in some (less restrictive) way without the use of compulsion, and if so, why they continue to be cared for in hospital
• What exactly is being done for these individuals while they are detained in hospital (i.e. what is the nature of any assessment, care or treatment they receive and who provides it)
• The purpose of any medication used in the care and treatment of these individuals
• The assessment by the Mental Health Tribunal of the justifications for a compulsory treatment order
• Whether these individuals have been offered, and have made use of, independent advocacy services or other types of support to communicate their views.

3.9 It was suggested that a case study approach would be appropriate to gather this evidence. It was also thought that this evidence collection could be extended to include individuals with learning disabilities or autism who have previously been detained under the 2003 Act (since it came into effect), but are no longer in hospital. Outcomes for these individuals should be identified.

3.10 One interviewee referred to research currently being carried by an international team led by Dr Eilionóir Flynn at the National University of Ireland ( NUI) Galway. The VOICES project (Voices of Individuals: Collectively Exploring Self-determination) is investigating how the use of supported decision-making might work in practice in relation to: (i) consent to medical treatment; (ii) criminal responsibility; (iii) contractual capacity; and (iv) consent to relationships / sex. The study has significant involvement from people with disabilities. It was suggested that this research may not only provide an important source of evidence for the review, but may also offer lessons in how to involve people who have been subject to the 2003 Act in the review process. (See Box 2 for further information.)

Box 2: The VOICES project, led by NUI Galway

The project aims to address three questions which will help to frame a comprehensive approach to previously neglected aspects of legal capacity law reform. These questions are:

• What constitutes an exercise of legal agency from an individual?
• What are the justifiable limits on individual agency which can be imposed by the State and apply to everyone, regardless of disability or decision-making ability?
• How can we ascertain whether an individual is giving free and informed consent (necessary to make an action legally binding), without engaging in a functional assessment of that person's mental capacity?

The project involves pairing disabled people who have experience of one of the four areas listed in paragraph 3.10 above with experts from a range of professional backgrounds (legal, social work, academic, etc.) to work through their stories and consider what a supported decision-making solution might look like in their situations.

The project is due to complete in 2018, but the research team is publishing working papers on an ongoing basis. See: https://ercvoices.com/.

Learning disability and autism in the criminal justice system

3.11 One of the reasons given in the Millan report for including learning disability in the 2003 Act was that it would allow people with learning disabilities and autism who commit offences to be detained in hospital rather than sent to prison. However, interview and survey participants in this scoping study noted that the 2003 Act is not being used for this purpose in a consistent way. Concerns were voiced about the high proportion of people in prison in Scotland who have a learning disability or autism. These individuals were seen to be at very high risk of being bullied, harassed and exploited in prison.

3.12 In contrast to this view, learning disability groups commented that being detained under the 2003 Act was 'worse than being in prison' since, if a person with learning disability is put in prison for breaking the law, at least that person will get out again whereas if that person is detained under the Mental Health Act, they may be detained for a far longer period of time, and have greater restrictions placed on them than other people who commit more serious offences. It was suggested that the length and nature of restrictions placed on people with learning disabilities seem to be out of proportion to the offence committed.

3.13 Different participants suggested that the review should gather evidence about:

• The reasons that people with learning disabilities and autism come in contact with the criminal justice system
• How the criminal justice system deals with these individuals (at arrest, in court, in prison) - specifically, the extent to which supported decision-making is being promoted in criminal justice contexts, and the provision of the 'Appropriate Adult' scheme in particular
• The long term outcomes for people with learning disabilities and autism who have been in contact with the criminal justice system since the 2003 Act came into force
• Whether people with learning disabilities and autism are disadvantaged in the criminal justice system as compared to other people
• The supports available to help people address their behaviour before it becomes a criminal justice matter.

3.14 There were also calls for the review to look at the application of the 2003 Act in forensic contexts. People thought the review should answer the following questions:

• Are people with learning disabilities and autism being disadvantaged (for example, compared to people with a mental illness who do not have a learning disability) when they are detained in hospital through criminal justice processes?
• What is the nature and purpose of the care and treatment these individuals receive when they are detained in a secure hospital?

3.15 It was suggested that there may be differences between people's experiences in relation to civil and criminal proceedings, and that the review should consider both. In addition, there was a concern that people with learning disabilities and autism may find it much harder than other people to seek justice when they have been the victims of an offence.

The experiences of other jurisdictions

3.16 People agreed that the review should gather evidence about legislative arrangements in other countries relating to people with learning disabilities and autism, and there was particular interest in new legislation recently enacted in Northern Ireland. ^[8] People also wanted the review to consider the experience of New Zealand which has separate legislation related to learning disability. ^[9] Others suggested that the review should gather evidence from:

• England and Wales where a 2007 amendment of the Mental Capacity Act 2005 resulted in the development of 'Deprivation of Liberty Safeguards'
• Germany where it was reported that 'everyone has the right to be heard in court, even if they have impaired mental capacity'
• British Columbia in Canada where there was reported to be legislation about supported decision-making
• Scandinavia which was seen to have a more progressive criminal justice system
• Relevant human rights-related court judgements in other countries.

The wider legislative context in Scotland

3.17 There was a repeated call among survey and interview participants for any legislative review not to focus narrowly on the question of whether learning disability and autism should (or should not) be removed from the 2003 Act. Rather people argued that a more comprehensive review of the wider legislative framework for non-consensual care and treatment in Scotland is now required.

3.18 People believed the scope of the review should, therefore, include not only the 2003 Act, but also the Adults with Incapacity (Scotland) Act 2000 and the Adult Support and Protection (Scotland) Act 2007. Some people also suggested that this wider review should encompass s13ZA of the Social Work (Scotland) Act 1968, the Social Care (Self-directed Support) (Scotland) Act 2013 and the Criminal Procedure (Scotland) Act 1995, part VI, as all of these include provisions which allow the State to take certain actions or make decisions on behalf of individuals who may lack capacity.

3.19 Participants offered the following arguments in support of a wider review:

• Current legislation in this area is very complex. Some suggested that the different Acts had 'got out of step with each other', and the review should consider whether there was scope for 'rationalisation'.
• There were specific concerns about the use of guardianship and power of attorney, which are covered within adults with incapacity legislation, but which also have an impact on the rights of people with learning disabilities and autism. Specifically, people had concerns about: (i) the length of time between reviews of guardianship arrangements for people with learning disabilities or autism; and (ii) the extent to which these individuals are involved in these reviews. It was also noted that the process for applying for guardianship involved a different judicial body (the sheriff court rather than the Mental Health Tribunal) and different procedures than the process of applying for a compulsory treatment order.
• The review should consider the full range of support which people with learning disabilities and autism may need. It would be more difficult to do this if the review looks only at the 2003 Act in isolation.

3.20 There were also arguments against focusing only on learning disability and autism. For example:

• A narrow focus on learning disability and autism and the definition of 'mental disorder' was seen as a 'piecemeal' approach to addressing more significant issues related to compulsory treatment, restriction of liberty and substitute vs supported decision-making.
• People considered that legislation based on particular diagnoses was problematic. The issues that this review will consider for people with learning disabilities and autism may also apply to people with dementia, mental illness, personality disorder and other conditions. ^[10]

3.21 People thought that a wider review would be very challenging and would require significantly more time than had been envisaged for a review of learning disability and autism in the 2003 Act. However, they also thought it would offer the opportunity to take a fresh look at Scotland's mental health and incapacity legislation, and to reframe it to take account of current standards in human rights and the UNCRPD. Participants suggested that the extensive work carried out for the Bamford Review in Northern Ireland, which provided the basis for the Mental Capacity (Northern Ireland) Act 2016, could offer a useful starting point.

3.22 There was also a suggestion that, in setting the scope of the review, it might be helpful to refer to a written response made by the Council of Europe's Commissioner on Human Rights to the Oviedo Convention ^[11] regarding a draft 'Additional Protocol' on involuntary placement and involuntary treatment of persons with mental disorders. ^[12] The Commissioner's comments included suggestions about how to move away from the use of coercion in psychiatry, and towards greater protection from discrimination for people with psychosocial disabilities ^[13] by focusing on the identification of good practice in relation to:

• Developing non-discriminatory criteria for assessing risk to self or others, as well as impairment of decision-making capacity
• Promoting alternative measures and reducing recourse to coercion in psychiatry, as well as reducing excessive use of restraints or medication
• Involving patients in treatment decisions and ensuring access to adequate support for decision-making for people with psychosocial disabilities.

Other aspects of the 2003 Act which the review should consider

3.23 Notwithstanding the frequent calls for a comprehensive review of current mental health and incapacity legislation in Scotland, participants in the scoping study were nevertheless also keen that the review should not lose sight of the particular needs of people with learning disabilities and autism. They highlighted a range of other issues related to the 2003 Act which the review should consider in relation to these groups.

Terminology and definitions

3.24 People often explicitly stated that they did not consider learning disability and autism to be 'mental disorders', and that these conditions should not be included within the definition of 'mental disorder' under the 2003 Act. This view was expressed not only by people with learning disabilities and autism, family carers and advocacy groups, but also by professional care providers. Different individuals suggested that more suitable terms might include 'long term condition', 'disability' or 'disorder of mental development', but there was not consensus about any alternative terminology.

3.25 An alternative, though less common view was that the issue of definitions was not the most important point to consider. Those who held this view acknowledged and understood the arguments for removing learning disability from the definition of 'mental disorder'. However, they did not believe these arguments justified the removal of learning disability from the 2003 Act. Rather this group thought the important questions for the review were about: a) whether the provisions of the 2003 Act related to compulsory care and treatment represented the right approach to take with individuals who had impaired decision-making and were at risk of harming themselves or others, or b) whether there was a better approach which should be used instead.

3.26 In relation to autism, the issue of 'definition' is more complicated. The Millan Review recommended that autism be included within the meaning of learning disability, but the Act itself makes no direct reference to the condition. This has caused confusion in applying the Act, particularly in relation to people with Asperger Syndrome whose condition affects their social functioning, but not their ability to make decisions.

The Millan principles

3.27 The 2003 Act is underpinned by a set of 10 principles which set out how professionals should work when providing care and treatment under the Act. It was suggested that the review should revisit these principles to determine: (a) whether they are acting as a guide to practice in the care and treatment of people with learning disabilities and autism (as intended), or (b) whether they need to be changed to better reflect current standards in human rights and the UNCRPD.

The role of psychologists (and other professionals) in the 2003 Act

3.28 There was support for the idea that the review should consider a possible role for psychologists in carrying out treatment under the 2003 Act. Psychologists were seen to have the necessary skills and knowledge of Positive Behavioural Support interventions to be able to take on the role of 'Responsible Clinician', and it was suggested that the review should identify what additional competencies psychologists would need to fulfil any new responsibilities relating to the use of compulsory measures.

3.29 However, there were also different perspectives on the current role of psychologists in supporting people with learning disabilities and autism, and it was pointed out that there were differences across Scotland in the availability and involvement of psychologists in multiagency learning disability teams.

3.30 Speech and language therapists were also reported to have an important role in providing care and support to people with learning disabilities and autism - particularly where the individual was 'non-verbal' or had other communication difficulties. It was suggested that the review should consider whether speech and language therapists should have a role within a legislative framework to assist with supported decision-making.

3.31 A view was also expressed among some participants that the 2003 Act gives psychiatrists 'too much power' and that the recommendations of psychiatrists (regarding compulsory treatment) are often carried even where a Mental Health Officer disagrees.

Advocacy services for people with learning disabilities and autism

3.32 People thought the review should examine the extent to which independent advocacy is available to, and used by, people with learning disabilities and autism who are subject to the 2003 Act, and consider whether there should be standards for advocacy services in working with these groups. People reported both positive and negative experiences of advocacy services being used by people with learning disabilities and autism.

Psychotropic medication

3.33 The use of psychotropic medication to treat behavioural problems in people with learning disabilities and autism was a serious concern for some people, and there were calls for the review to examine: how and when medication is prescribed; whether it is being used appropriately (there were particular concerns about the possible use of medication as a 'chemical restraint'); the extent to which current prescribing practice (particularly in relation to people with autism) is consistent with NICE guidelines ^[14] ; what strategies are used for stopping medication when it is no longer needed; and whether the use of medication increases suicidal behaviour among people with learning disabilities and autism.

Other issues

3.34 People raised a range of other issues concerning the 2003 Act which they suggested the review should examine, including:

• Whether and how people are supported to make decisions about having a 'named person' ^[15]
• Whether individuals with a wider range of expertise (e.g. neurologists, immunologists, etc.) should be part of tribunals in Mental Health Tribunal cases where the individual has autism
• Whether additional safeguards are needed for non-pharmacological interventions under the 2003 Act.

Service provision

3.35 The fourth topic suggested by the Millan Committee for consideration by any future review related to service provision. At the time of the Millan Review, learning disability services were undergoing a major transformation as long stay hospitals closed and people moved into the community. The majority of people with learning disabilities are now supported in the community, rather than in hospitals or other institutions. However, at the time of the Millan Review, fewer alternatives to in-patient services were available to those not being cared for by their families. This was one of the reasons that the Millan Committee recommended the inclusion of learning disability and autism in the 2003 Act, while also recommending an early review of these arrangements.

3.36 The people taking part in the scoping study raised a wide range of issues related to service provision. In general, they thought that the review should not focus solely on legislation and the way in which legislation is being used; it should also consider the way in which services are delivered - before, during and after an episode of compulsory care and treatment. In particular, people commented that:

• High quality, appropriate care and support are the key factors that enable a person to live independently in the community or to move back to the community after a period in hospital.
• The use of compulsory measures may result where there has been a breakdown in care and support in the community. The care and support of people with learning disabilities and autism requires integrated teams with specialist expertise; breakdowns in care and support were thought to happen where staff do not have the necessary skills and knowledge to provide good quality care. Stressed and distressed behaviour may also be an indication of inappropriate service provision.
• Stressed and distressed behaviour may become worse if a person is removed from their home and taken into hospital, and cannot understand the reason for this. This makes the assessment of these individuals more difficult.
• The length of detentions in hospital may be due to a lack of resources for more appropriate (less restrictive) support in the community and, related to this, a reluctance by community services to accept the risks associated with caring for people with very complex needs.
• Out of area placements for people with complex needs are still too common.
• There is a dearth of assessment services for people with autism across Scotland, and problems with misdiagnosis (e.g. Asperger Syndrome being diagnosed as a personality disorder). The lack of a diagnosis or a misdiagnosis means that people are left unsupported. This can result in the development of mental health problems or offending, which can in turn lead to the use of compulsory treatment or imprisonment.
• Early onset dementia among people with Down's Syndrome often results in these individuals being inappropriately placed into care homes with adults who are much older. There was also a question about whether people with Down's Syndrome were being misdiagnosed with early onset dementia without adequate investigation of other possible causes of changes to their behaviour or cognitive abilities.
• The physical health needs of people with learning disabilities and autism are often overlooked, untreated, or seen as untreatable because they are attributed to these conditions (i.e. the learning disability or the autism).

3.37 At the same time, the point was also made that there is a great deal of good practice in Scotland with, for example, specialist integrated learning disability teams supporting people to live independently in their communities. Participants wanted the review to consider the factors that support good practice in this area.

Issues the review should NOT consider

3.38 Few people took the opportunity to comment on what the review should NOT consider. Among those who did, there was a view that the 2003 Act was a good piece of legislation which appeared to be working well for people with mental illnesses. This group thought it was unnecessary for the review to include any of the other groups covered by the Act. (Note, however, that the more prevalent view was that the findings of any review of the 2003 Act in relation to people with learning disabilities and autism would likely also be relevant to people with mental illness and personality disorder, and that changes to the legislation should take this into account.)

Workshop discussions on the scope of the review

3.39 Based on the information gathered from survey respondents and interviewees in stages 1 and 2 of scoping study, a preliminary proposal regarding the scope of the review was drafted. This included seven questions which, it was suggested, the review might address. Attendees at both the workshops were asked whether these were the main questions the review should answer:

• Do we need to change the 2003 Act for people with learning disabilities and autism to take account of laws on human rights (including the United Nations Convention on the Rights of Persons with Disabilities)?
• Are the principles of the 2003 Act relevant to learning disability and autism, or should the principles be updated or changed?
• Do people with learning disabilities or autism need different kinds of protections when they must be taken into hospital or given medication when they do not want it? Do people with learning disabilities or autism need special protection in the law if they have to be physically stopped from hurting themselves or others, or kept separate from other people?
• Who should be involved in making decisions about treatment where people do not or cannot agree to it?
• What is the best way to help people with learning disabilities and autism who break the law, or who are at risk of breaking the law?
• What role should 'supported decision-making' have in the care and treatment of people who do not or cannot agree to their care or treatment?
• How can the law help people with learning disabilities and autism to have access to the right services to help them live independently?

Views of workshop attendees about the scope of the review

3.40 There were mixed views among workshop attendees that the questions above were the right questions for the review to focus on. The more dominant view was that they were, and discussions often focused on the specific issues that should be explored when addressing each question. However, workshop attendees with lived experience did not all agree with this. Some argued that the review should start with the fundamental question of whether learning disability and autism should continue to be included in the 2003 Act or removed from it. If it is agreed that they should be removed, then the purpose of the review should be to consider what other legislative framework (if any) would be required instead. Among this group, there was a view that existing mental health legislation was discriminatory and did not comply with current human rights standards. Thus, the questions above regarding substitute decision-making, or the protections required for people who are given treatment that they do not want were not accepted as appropriate for the review. It was argued that these questions assume that it is acceptable to make decisions on behalf of people with learning disabilities and autism rather than provide people with the support to allow choices to be made which respect their will and preference.

3.41 Some workshop attendees thought there should be separate laws for learning disability and autism, and that the task of the review should be to consider what those laws would look like. However, the more common view was that mental health and capacity legislation in Scotland was already too complex and needed to be rationalised. Workshop attendees who worked as health and care providers across different sectors were particularly concerned that if separate laws were created for people with learning disabilities and autism, this might then lead to new laws being created for a wide range of other conditions as well, and this was seen to be untenable. This group also argued that, given the high levels of comorbidity between learning disability, autism and mental illness, it would not be helpful to create separate legislation for these conditions as this would mean that some individuals could be subject to multiple laws.

The issues of terminology and diagnosis

3.42 The term 'mental disorder' was universally disliked among workshop attendees. Those with lived experience of learning disability or autism commented that 'there is an assumption that 'disorder' resides within the person' whereas a more correct assessment would be that people with learning disabilities or autism often come into contact with services because of a crisis resulting from external factors over which they have no control. It was suggested that the review should begin by acknowledging that terminology and language are important. (It was noted that people with mental illnesses also dislike the term 'mental disorder'.)

3.43 The issue of 'diagnosis' arose as a significant and recurring theme in the autism workshop. One view was that it would be good to move away entirely from legislation based on diagnosis and labels. However, in relation to autism, there was not complete agreement about this. A range of (sometimes divergent) points were made:

• There were concerns that people with autism may be subject to the 2003 Act unnecessarily and given inappropriate treatment, because aspects of autistic behaviour may appear like mental illness. Before any decision is made to detain or treat someone under the 2003 Act, safeguards should be in place to ensure that the person has received the right diagnosis.
• It was noted that there is a high prevalence of learning disability among people with autism. People with autism also suffer from high levels of mental illness. The process of diagnosing these different conditions - particularly in an individual who is non-verbal - is extremely complex.
• There was a view that misdiagnosis was common. This was attributed by some to a lack of competence and skills in relation to autism among mental health professionals. There was also a view that the symptoms of underlying physical conditions were also sometimes being misdiagnosed as autism - or as mental illness among people with autism.
• There were concerns about the lack of diagnostic services across Scotland in general, and repeated concerns about the lack of specialist support available to people with autism even where a diagnosis has been confirmed.
• While some workshop attendees believed that labelling people with a diagnosis was unhelpful (particularly in light of the frequency of misdiagnosis and the potential for inappropriate treatment to be given on the basis of a misdiagnosis), others with lived experience of autism emphasised how vital it was for them as adults to have a diagnosis as this allowed them to understand themselves better and obtain support.