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

6. Conclusions and recommendations

6.1 This scoping study was the first stage of a review of the Mental Health (Care and Treatment)(Scotland) Act 2003 as it concerns people with learning disabilities and autism.

6.2 The study sought to lay the foundations for the review by gathering views from selected key stakeholder groups about:

• What the scope of the review should be
• Who should be involved
• How the review should be conducted.

6.3 One key message from this work was that learning disability and autism are different, but related. On the one hand, the review must acknowledge the diversity in both conditions, but on the other, it must recognise that there is also significant comorbidity between the two, and between both sets of conditions and mental illness.

Scope

6.4 In general, those who participated in this study understood that the main aim of the review would be to answer the question: Should learning disability and autism continue to be covered by the 2003 Act - or not? Participants suggested a range of issues they wanted the review to look at - many of which would involve a detailed examination of how different aspects of the 2003 Act are working in practice for people with learning disabilities and autism. They also wanted the review to consider whether and how this current practice measures up to human rights standards which have developed since the law came into force.

6.5 However, this broad understanding of the purpose of the review was not shared by all participants in the study. In particular, representatives from People First argued that the review should start with the question of whether learning disability and autism should continue to be defined as 'mental disorders'. Given the almost unanimous agreement among those who took part in this study that they should not be defined as 'mental disorders' , the main aim of the review would therefore be to consider what kind of legislation is needed to support people with learning disabilities and autism to become empowered citizens.

6.6 Those who held this second view did not accept that the review should seek to answer questions about whether a legislative power is needed to make decisions for people who lack capacity, or to require people to accept treatment which they disagree with, since they argued that such powers are not consistent with the UNCRPD. ^[21]

6.7 One possible way of reconciling these two divergent views would be to shift the initial focus of the review from whether learning disability and autism should be included in the definition of "mental disorder" in the 2003 Act to what sort of legal provision would best ensure that the human rights of people with learning disabilities and autism are fully respected. This would allow for the review to start from first principles in considering the best approach to take in relation to the care and support of people with learning disabilities and autism. Having explored this, it could then move on to considering whether the approaches identified would be best achieved by amending the 2003 Act or whether new legislation may be required.

6.8 Should this alternative approach be agreed by the Scottish Government, the questions for the review as proposed in paragraph 3.39 above might then be reframed as follows:

• what sort of legislative provision (if any) is needed to protect and enhance the human rights of people with learning disabilities and autism?
• What role does 'diagnosis' have in any (potential legislative) response?
• What is the best way to help people with learning disabilities or autism who break the law, or who are at risk of breaking the law?
• How can 'supported decision-making' be used in practice in the care and treatment of the wide range of people who have learning disabilities and autism?
• Under what circumstances, if any, might it be justified to detain a person with a learning disability or autism in hospital, or require them to accept medical treatment to which they have not consented? If such circumstances exist, what protections are needed?
• How can the law help people with learning disabilities and autism to have access to the right services to help them live independently?

6.9 Taking into consideration the answers to the above questions, two further questions would then be:

• Are the principles set out in the 2003 Act relevant to learning disability and autism, or should the principles be updated or changed?
• How should the 2003 Act be amended and / or might new legislative provision be required?

6.10 The benefit of this type of approach is that it is consistent with the commitment made by the Scottish Government to have a review, and it does not assume any particular outcome. This type of focus is also consistent with the widely held view that this review should be holistic and consider not only provisions relating to people's care and treatment, but also provisions relating to guardianship and the protection of vulnerable adults.

A wider review?

6.11 It was not within the remit of this scoping study to consider whether there should be a wider review of all mental health and incapacity law, as this study was focused on the Ministerial commitment given in June 2015. However, it is striking how often the issue was raised. The Mental Welfare Commission is on record as saying that the entire legislative framework for non-consensual care requires a comprehensive review. ^[22] Whether a wider review happens is a matter for the Scottish Government; however, the Government has now proposed a review of incapacity legislation in 2016-2018, ^[23] as well as the review in relation to learning disability and autism in the 2003 Act. We believe these two reviews need to be part of a coherent and joined up process, since any substantial change to one Act is bound to impact on the other.

Need for further research

6.12 In discussing their thoughts about the scope of the review, participants in this study identified several areas where evidence would need to be gathered to inform the review's deliberations. It was clear that participants wanted the review to obtain a clear understanding of how the 2003 Act is being applied to people with learning disabilities and autism. This finding affirms the suggestions made by the Millan Committee (as set out in paragraph 1.6 above).

6.13 Specifically, participants thought the review should examine:

• How the 2003 Act is being used for people with learning disabilities and autism
• The experiences of people with learning disabilities and autism in the criminal justice system
• The experiences of other jurisdictions.

6.14 Regarding the first point, research could draw on data held by MWC about people with learning disabilities and autism who have been subject to the 2003 Act. This includes (for Compulsory Treatment Orders ( CTOs)) information taken from the applications and Tribunal decisions about why a CTO was thought to be necessary. This data could be supplemented by interviews with the people involved in a sample of cases to explore different perspectives on questions like: (i) Could compulsory measures have been avoided if other supports had been available? (ii) Did the use of compulsory measures benefit the person and if so, how? and (iii) What were the outcomes for the person?

6.15 Regarding the second point (in paragraph 6.13 above), similar research could also be carried out in relation to the relatively small number of people with learning disabilities and autism who have received mental health disposals in the criminal justice system. However, this would not address the concerns expressed by some participants about people with these conditions in the criminal justice system who are not given a mental health disposal. Research being carried out by the Equalities and Human Rights Commission ^[24] and groups like the SOLD Network ^[25] might shed light on the experiences of these individuals. It may also be possible to carry out a separate study to explore whether there are any significant differences between people with learning disabilities and autism who receive mental health disposals and those who are sent to prison. ( MWC has carried out a similar study in relation to women offenders with mental health problems. ^[26] )

6.16 The experiences of other jurisdictions (the third point in paragraph 6.13) could be identified through a literature review and evidence gathered from key informants. This work could be undertaken by a legal / academic institution.

6.17 Research on these three topics would provide a perspective on what is currently happening and, potentially, all of this work could be commissioned before the review begins. This would allow the findings to be made available to the review at an early stage.

6.18 In relation to the question of what type of legislative provision (if any) is needed for people with learning disabilities and autism, the review will also need to consult widely, and this process will take time.

6.19 Related to this, a fourth area for research might involve a study similar to the VOICES project being conducted in Ireland (see Box 2 in Chapter 3). This would involve people with learning disabilities and autism working together in a structured way with health and social care professionals and law experts to explore what a human rights based response is in relation to issues of legal agency, consent to treatment, criminal responsibility, and the use of supported decision-making. This would be an ambitious project and would require a significant commitment of time. However, such a study would be particularly relevant if the Scottish Government chooses to carry out a wider review of capacity-related legislation in Scotland (not only the 2003 Act, but also the Adults with Incapacity Act and the Adult Support and Protection Act).

Who should be involved

6.20 There was general agreement about the individuals and groups that will need to be involved in the review. Chapter 4 has summarised this information and Annex 3 includes the names of specific organisations and groups that should be involved. During this study, representatives of several organisations offered help in organising consultation activities and supporting people with lived experience of learning disability or autism to be involved in the review.

6.21 There was also agreement that the review should consult widely and make every effort to obtain views from the wide range of people who may have a learning disability or autism, and their families and carers. There was concern that the review should not rely solely on the views of individuals and groups who have been campaigning for change.

Conduct of the review

6.22 Regarding the review group, a consensus appeared to emerge about the nature of the group.

6.23 There was general agreement that the review should have a single chairperson. (A suggestion of two chairpersons, one of whom would have lived experience of a learning disability, was not generally supported.) The chairperson will need to be independent (and seen to be so), credible, willing to listen to all points of view, clear-thinking and able to make decisions. Knowledge of the topic would be an advantage, but was not thought to be a priority. Knowledge of, and a commitment to, human rights was seen to be particularly important.

6.24 There was general agreement that the chairperson should be supported by a small core group (6 to 8 members was suggested), with additional reference groups who could be consulted about specific issues.

6.25 There was no consensus about the timescales for the review. The Scottish Government has proposed a start date for the review 'before April 2017'. Some participants were keen to adhere to the suggested three-year timescale from the date of royal assent of the Mental Health (Scotland) Act 2015 - thus leaving just 18 months for the review. These individuals were concerned that the review should be completed and any changes to legislation (if required) set in motion before the end of the current parliamentary term.

6.26 However, given the general agreement that the review must consult widely, we believe a longer timescale will almost certainly be needed. Meaningful consultation with the wide range of individuals and groups who need to be involved in this review will take time and the design of the review process and timescales need to acknowledge this.

Conclusion

6.27 When we began this study we were concerned that, amongst those who had any view on the issue, there were two diametrically opposed positions. For many people with learning disabilities and autism, and some of the organisations who support them, the inclusion of learning disability in the 2003 Act was a mistake from the beginning, which needed to be corrected as soon as possible. For other organisations and many professionals concerned with the care and treatment of people with learning disabilities and autism, there was serious concern that changing the law would be hugely complicated, and potentially lead to worse outcomes for the small number of people who need to be detained in a hospital setting or given treatment for their own safety and wellbeing.

6.28 It was not our job to decide between those positions or to force consensus where it does not exist; rather our job was to explore how best this review should take forward its important work. As this report demonstrates, there is a good deal of consensus on some issues, but profound differences remain and cannot be ignored. We hope, however, that our study will help the review to negotiate these in a way which is inclusive, credible and visionary.