Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Section 2: Mental Health and Capacity Law

Introduction

The consultation document highlighted that current mental health, capacity and adult support and protection legislation in Scotland can, in certain circumstances, apply to people with learning disabilities and autistic people. It set out the various relevant laws and how/when these can apply to people with learning disabilities and autistic people, and the views of LEAP members in relation to this issue. The consultation document also set out previous reports resulting in differing recommendations, and ongoing work in the area.

It was suggested that the LDAN Bill could propose to make changes to mental health and capacity legislation in Scotland as it relates to people with learning disabilities and autistic people. Those changes could be to:

• Specifically remove learning disability and autism from the scope of mental health and incapacity legislation; or,
• Change “mental disorder” to a term that is not stigmatising or offensive.

However, it was also stated that the Scottish Government was not consulting on any proposals for legislative change in this area due to the need for additional work to be carried out first.

Main Findings

Respondents were asked to indicate whether they agreed with this approach (rather than any specific proposals) as a closed question.

Most of those who provided an answer (80%, n=289) agreed with the proposed approach. Results for individuals closely mirrored the aggregate results above, while organisations and public bodies in particular were more likely to support the proposed approach - 84% of all organisations and 90% of public bodies that responded supported the approach (see Appendix B). However, the small number of public bodies who responded at this question (n=29) should be borne in mind when interpreting the results.

In addition to the closed question, 370 respondents provided qualitative free-text feedback. These qualitative comments, however, often focused agreement on one or both of the options related to removing learning disabilities and autism from mental health law or changing the terminology, or because they supported the need to undertake other work to further consider the issue in detail and to identify potential unintended consequences. Comments did not always address or consistently support all elements of the approach set out.

In terms of those who disagreed, the majority were individuals - only 12 organisations explicitly expressed disagreement with the approach. Some organisations (n=41), however, provided qualitative comments and feedback at this section without answering the closed question, along with 25 individuals. These respondents often acknowledged both pros and cons of the approach, or agreed partially with some elements and disagreed with others. Their comments were generally consistent with those who agreed/disagreed, however, and so are reported together below.

Remove Learning Disability and Autism from Mental Health and Capacity Legislation

Of those who agreed with the approach outlined, many individuals specified the need to remove learning disabilities, autism and neurodivergence from the Mental Health and Capacity legislation. Some argued that including these conditions within the spectrum of mental illness or labelling them as ‘mental disorders’ was offensive, while others noted that the term ‘mental disorder’ was technically incorrect:

“People with learning disabilities and autism should never have been put in Mental Health Care and Treatment Scotland Act 2003 in the first place… as a person who has learning disabilities it’s very insulting to be called mentally disordered.” (Individual with a learning disability)

Several respondents stressed that learning disabilities and autism are lifelong conditions and cannot be treated or cured in the way that mental ill health can be addressed. Rather, learning disabilities and autism were considered to be neurological differences, and not as there being anything “wrong” or “broken” in these individuals. Respondents argued that having a learning disability or autism was not equivalent to, or the same as, having a mental health issue:

“My autism and ADHD is not a mental disorder but lack of appropriate health care/support and prejudice means I experience mental health problems such as anxiety, depression, sleep disruption, anger etc.” (Neurodivergent Individual)

Several reasons were provided as to why clearer separation of mental health conditions and learning disabilities and autism was needed. Some felt this would help to better reflect the different types of conditions and the different needs involved. This was important to avoid both misdiagnosis and inappropriate pathways and treatments being applied. For example, respondents were concerned about the inappropriate use of medication and individuals being sectioned when support, adjustments and more accessible communication would be more effective.

Others wanted clearer separation of mental health and learning disabilities/autism as this would be important in ensuring individuals are referred into appropriate support services. It was noted that mental health services were not always well equipped to understand the needs or presentations of people with learning disabilities and/or autistic people (or people with other neurodivergent conditions), or to support or treat these.

Several respondents also felt that separating the issues would help to avoid confusion and conflation, and build/promote greater understanding of each condition.

Respondents (largely individuals and third sector organisations) also discussed the issue of people with learning disabilities and autistic people being detained in hospitals, psychiatric units and forensic settings under the Mental Health Act, solely on the basis of their disability, and not due to mental health issues. In all instances where this was perceived to be the case, it was argued to be inappropriate and a breach of the persons human rights. It was stressed that this practice needed to be halted.

More Tailored Mental Health Services Needed

Even where people with learning disabilities and autistic people experience mental health issues, it was noted that mental health services needed to be better equipped to treat these individuals. It was suggested that treatments too often take a neurotypical approach which is unsuitable and ineffective for people with learning disabilities and autistic people:

“…often the support or assistance of mental health workers does not help the autistic person as their therapy and coping mechanisms do not take the autism into account so they are not as effective. There needs to be more research and training in this area. Suicidal thoughts are often present in autistic people, teenagers and adults alike. If the assistance they received was designed for them we might be able to save some lives.” (Neurodivergent Individual and Family/Friend/Carer)

It was felt that mental health services needed to better understand the characteristics of learning disabilities and neurodivergence, and differentiate these from mental health conditions so they can be treated appropriately. This included ceasing medication and in-patient treatments where these are unnecessary.

It was argued that more training was needed in this area for mental health staff, and that there needed to be better communication and more joint working between learning disability autism and neurodivergence services and mental health services. Several respondents went further and felt that a dedicated service was required to provide support for people with learning disabilities and autistic people (and potentially other neurodivergent conditions), rather than being reliant on the mental health sector. Mental health services were largely considered to not be the right setting, but were said to often be the only route to obtaining support.

Others stressed the need to ensure alternative support, health and treatment services would be available to people with learning disabilities and autistic people in the event that they were removed from mental health provisions. A few respondents also called for the introduction of more appropriate and dedicated legislation for people with learning disabilities and neurodivergent people in order to reflect and acknowledge these as distinct and separate from mental health issues.

Amend the Terminology

Other respondents either made no comment about separating learning disabilities and autism from mental health conditions, or were wary about removing them due to possible impacts on care, support and protections. However, they argued that the terminology and labels used needed to change. Terminology needed to be more carefully chosen, sensitive, and appropriate:

“…change term mental disorder to words that are not as upsetting or offensive. It is quite a negative word and suggests they have something wrong with them, and labels people.” (LDAN Support/Representative Organisation - Learning Disabilities)

The need for a change in terminology was said to be required for all individuals, including people with learning disabilities and autistic/neurodivergent people, and others with mental health issues in order to tackle stigma and negative connotations.

While most respondents did not give suggestions for alternative terminology, a few proposed using terms like mental health ‘difference’, ‘condition’, or 'cognitive divergence' rather than ‘disorder’. Others suggested that, if people with learning disabilities and autistic people are to continue to be included under Mental Health legislation, then they should be specifically named either under a ‘neurodivergent’ label or a ‘learning disability and neurodivergent’ label.

A few suggested that those with lived experience should be involved in determining any new terminology.

Some respondents argued that both proposed changes (i.e. to remove learning disabilities and autism from the scope of mental health and incapacity legislation, and to change “mental disorder” to another term) should be implemented.

Further Work and Consideration Needed

Several individuals agreed that, if enough information was not available currently, then it was sensible to delay any changes until additional work had been undertaken. Similarly, organisations tended to agree that the ongoing work in this area was important and should inform any changes, and that the approach outlined was sensible to avoid any duplication of effort or difference in approach.

Again, respondents stressed the need for those with lived experience to be involved in any reviews or designing any changes.

Unintended Consequences

Other respondents who agreed on the need for more work argued that this was necessary in order to understand any impacts and possible unintended consequences of making changes in this area. It was considered important that support was not withdrawn from those who need it and/or were currently in receipt of services. It was also suggested that removing groups from the Mental Health Act could have implications for other legislation (for example the Assisted Dying for Terminally Ill Adults (Scotland) Bill), and this would also need careful consideration:

“Caution should always be taken when adjusting wordings in law, to ensure that those who need to seek treatment are not subsequently prevented from doing so because of a linguistic alteration. Thus, a slower and more considered approach to ensure that those who currently access these services are still able to do so, while ensuring that additional people not currently covered are also made able to access these services, is the preferable option.” (Individual with a learning disability)

A few respondents were also concerned about what services individuals would access, if support would be available, and about the risk that they may be more likely to end up in the criminal justice system as a result of being removed from the Mental Health Act and not being able to access services.

Terminology

Respondents felt that more work was required to properly understand and “demystify” neurodivergence, to discuss definitions and the proper language to use, and to look carefully at how learning disabilities and autism are classified and any impacts such classifications or changes to legislation might have on individuals, their legal protections and their rights.

Ensure No Loss of Rights or Protections

It was also considered important to fully understand the potential consequences of removing conditions from the Mental Health Act as this was said to currently provide a number of rights and protections (although a handful of respondents felt the Act does not protect people but rather its interpretation by service providers can disadvantage people). These included (but were not limited to) the right to advocacy and conferring automatic vulnerable adult status. Respondents (across a wide range of different types) were keen to ensure that crucial rights and protections would not be lost.

In relation to advocacy specifically, a few respondents (mostly organisations) stressed the importance for access to this or the provision of advocacy when interacting with the Mental Health (Care and Treatment) (Scotland) Act 2003. It was felt this was vital in helping individuals and their families to understand their rights, to access legal advice and representation for Mental Health Tribunals, and to ensure their voices were heard and respected in decisions around their care and treatment. Respondents suggested that greater signposting and information about independent advocacy needed to be provided to individuals in these circumstances.

Avoid Lengthy Delays

Several respondents who supported the overall approach, however, caveated that it was important for the process not to take too long. Indeed, a few respondents noted that change in this area was overdue, and they felt that previous work and recommendations had not been implemented/impactful and that this issue needed to be treated with urgency.

Reasons for Disagreeing with the Approach

Among the respondents that disagreed with the proposed approach set out for mental health law, a range of different reasons were given.

In many cases, the reasons for disagreeing were the same as those given by respondents who supported the approach, such as the need to separate learning disabilities and autism from mental health, and disagreeing with the terminology used, i.e. ‘mental disorder’. The main issue for these respondents, and the way in which they differed from those who agreed with the approach, was that they wanted to see change happen more quickly and did not countenance any further delays. It was argued that people with learning disabilities and autistic people had been calling for change in this area for a long time, and that views had been clearly expressed in previous reviews. Others highlighted that further delays would result in more individuals and families being subject to the current inappropriate system.

A few also felt that the LDAN Bill should be used to make necessary changes and put appropriate structures and support mechanisms in place rather than waiting any longer. It was felt that not making such provisions was a missed opportunity.

Conversely, a few felt that the current terminology was correct and so there was either no need, or no point in changing it.

A few also felt that changes to terminology or the scope of the Mental Health Act would not result in any changes on the ground, but could result in a range of potential negative consequences, i.e. it could result in individuals becoming ineligible for certain services, support and protections, while not actually changing the risk of being referred into mental health service or being sectioned.

A few respondents (typically family and friends) also disagreed with removing autism in particular from mental health due to the close link between these. Others were concerned about the implications of removing learning disabilities and autism from mental health legislation. Respondents felt there was a risk to individuals being able to access or continue to receive services, or that people may be more likely to ‘fall through the gaps’. A few also indicated that, while in favour of removal, a new or interim system and suitable safeguards needed to be in place to support people with learning disabilities and autistic people so that there would be no gap:

“Although I agree that autism should not be under the mental health act as it is not a mental health condition, if you want to remove autistic people from the mental health bracket, you need to have a plan already in place that supports autistic people in these areas. It would be more detrimental to remove us and then we would have even less support than we do now.” (Neurodivergent Individual)

A handful of respondents disagreed because they felt that the consultation document did not outline an approach for mental health and capacity law.

Other Comments and Considerations

Capacity

Several respondents discussed the issue of capacity and the Adults with Incapacity (AWI) Act. It was stressed that assumptions must not be made around capacity simply based on whether a person has a learning disability, is autistic or neurodivergent, and that it needed to be fully and robustly assessed by a qualified professional:

“…the perpetuation of the belief that all people with learning disabilities, autistic and neurodivergent people might be more vulnerable or lack capacity to make choices for themselves leads to them having their independence and decision-making taken away from them.” (Health Service)

It was also noted that autistic people can often lack capacity around decision making during highly stressful moments, but not in a more general sense. Again, this needed to be better understood and taken into account.

However, a few respondents were concerned about proposals to remove learning disabilities and autism from the AWI Act and the possible negative implications it would have on certain individuals who were considered not to have capacity, as well as the impact on their families/carers.

A few respondents (typically organisations) stressed that any changes to the Mental Health Act also needed to be considered in the context of the AWI Act, with a joined up and consistent approach taken.

Guardianship and Supported Decision Making

Concern was also raised about the granting and monitoring of guardianships. In most (but not all) cases where this issue was discussed, respondents were generally negative about this system and either wanted reform or an end to it. A few discussed the granting of inappropriate guardianships, the lack of robust monitoring of guardianships, and the inability to reject or appeal guardianships. A few others complained about the need to reapply for guardianship status at regular intervals when the person has a long-term/life-long condition that will not improve.

Several respondents advocated for supported decision making (SDM), with a few suggesting that SDM may be more appropriate than guardianships. There were calls for more training in this area and greater use of this approach. It was also stressed that those with lived experience should be included in any discussions around the development and use of SDM taking place as part of the Scottish Mental Health Law Review (SMHLR).

Other Comments

A few respondents stressed that more attention was needed on early intervention and support to avoid individuals reaching crisis point.

There was also concern that people with learning disabilities (and their needs, issues, experiences and concerns) may get “lost” within a wider neurodivergent label if they are not clearly identified within mental health law.

Finally, a few mental health organisations noted that some of the comments included in the consultation paper appeared to convey negative perceptions of mental health conditions and could be interpreted as disrespectful and disparaging of this cohort. It was felt that more understanding and respectful consideration was required in relation to mental health and that everything possible should be done to avoid stigmatising conditions/individuals.