Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Part 4: Accountability

Introduction

The consultation set out how the LDAN Bill provides an opportunity to ensure that there is improved accountability for the delivery of individuals’ rights and presented five options for how this might be achieved, these being:

1. Create a new Commission or Commissioner;

2. Provide better resourcing and additional duties for an existing body;

3. Create Champions and Advocates within Scottish Public Bodies;

4. Provide better resourcing for existing Disabled People’s Organisations (DPOs) who support people with learning disabilities and neurodivergent people in ensuring that their rights are upheld; and

5. Supporting good practice through standards, guidance and practical tools and investing in co-production.

The consultation also set out that these options (either singly or combined) would operate in addition to the existing roles of charities and DPOs and would not replace them.

Main Findings

A closed question was asked to allow respondents to identify which of the 5 options they thought would best protect, respect and champion the rights of people with learning disabilities and neurodivergent people (with the ability to tick multiple options).

Base: 451 respondents answered this question

Note: Multiple responses were permitted at this question

Most respondents indicated that they would like to see a combination of different options, but there was no clear consensus around which combination of options this should be. There were also similar levels of support for all options with the exception of Option 2 which attracted the least support overall. Option 1 attracted greater support than any of the others as a standalone option.

While supported in principle, a number of respondents indicated that it was unclear how Options 3, 4, and 5 would deliver accountability unless accompanied by either Options 1 or 2:

“We do not support Models, 3, 4 and 5 as they have no real accountability powers and would struggle to hold public authorities to account.” (LDAN Support/Representative Organisation - Down's Syndrome)

The results were also disaggregated by respondent type (see Appendix B). This shows different preferences between individuals (largely represented by the results above), all organisations and public sector organisations.

• Results for individuals was largely consistent with the levels of support outlined in the table above;
• Organisations provided reasonably similar levels of support for Options 1, 2, 4 and 5, with between 52% and 56% of those who responded supporting each of these. Options 3 was slightly less well supported by all organisations (at 44%); and
• Public bodies preferred Option 5, with around three quarters (74%) of those who responded to this question selecting this option. Meanwhile, the least favoured option was Option 1, supported by just over one third (38%). However, the relatively small number of public bodies who responded at this question (n=42) needs to be borne in mind when interpreting the results, along with the fact that nearly half of all public bodies in the sample did not answer this question.

In addition to the closed question, 423 respondents provided qualitative feedback to support their choices and/or to comment on other possible options that should be considered.

Option 1: Create a New Commission or Commissioner

Many respondents supported the creation of a new Commission or Commissioner and felt that this was the best way of ensuring that historical failings in supporting the needs of people with learning disabilities and neurodivergent people were addressed. Many also highlighted that this had been long campaigned for and felt it was long overdue:

“Despite positive strategies and legislation having been promoted or passed in Scotland over many years, the reality remains that a gulf exists between the aspirations of legislators and the realities of lived experience… We believe that the establishment of a Commission(er) with responsibility to focus on the rights of autistic people and people with learning disabilities can drive the change which needs to be realised…” (LDAN Support/Representative Organisation - Autism)

Many specifically supported the idea of a Commission(er) working alongside champions in different sectors, as an approach which they felt would provide the most accountability (ensuring central oversight and local action).

Other frequently given reasons in support of a new Commission(er) were that it:

• Would be a position of authority that was impartial and independent of Government;
• Would be an easily identifiable port of call for people wishing to raise issues linked to accountability;
• Would provide an official point/legal entity with accountability responsibilities;
• Could advocate for good practice/facilitate improvement in areas where practice is identified as being weaker or deficient; and
• Support the dissemination of good practice.

Respondents also commented that they felt the Commission(er) must:

• Have enforcement powers in order to be a credible option;
• Have ‘duties’ in relation to the legislation rather than ‘powers’ alone;
• Be able to hold public authorities to account;
• Have responsibility for collating data on outcomes for people with learning disabilities and neurodivergent people, and to monitor and respond to issues of concern;
• Be permitted to conduct formal investigations at both individual and service level;
• Have a role in promoting and securing rights; and
• Have a function to oversee issues of intersectionality, where learning disabilities, autism and neurodivergence overlap with other equality concerns.

Several respondents indicated that they would like reassurances that any Commission(er) would have the necessary expertise, knowledge and the capacity to address the needs of all of the unique communities covered by the LDAN Bill. Some also suggested it may have an even wider remit, for example, to include those with Additional Support Needs (ASN), to serve a wider proportion of the population.

Several comments were also made that it would be very important for the Commission(er) to continue to work closely with or be made up of people with lived experience and to consult with and involve individuals with lived experience in order to prioritise its work (i.e. to be supported, guided and advised by a 'LEAP-like' body which also included families/carers). As with comments throughout the consultation, however, respondents again stressed that such involvement needed to be meaningful and not tokenistic, and that additional preparation, training and support for those with learning disabilities, autism and neurodivergent conditions may be required to allow them to contribute.

Several comments were also made that if a new Commission(er) were developed, there must be robust selection and recruitment procedures in place alongside clear annual reporting mechanisms and a strategic plan in place to guide its/their operation (ideally co-produced with, and scrutinised by, people with learning disabilities and neurodivergent people and their families.) Similarly, making the financial accounts of any new body publicly available was encouraged.

The question did not require respondents to identify whether they had a preference for either a Commission or Commissioner, and there was no clear consensus within the qualitative responses. Most of those who supported this option either repeated the terminology used in the consultation document (i.e. referring to a Commission or Commissioner) or they discussed the issue in more general terms without referencing either a Commission or Commissioner. Only around a third discussed a singular entity, with slightly more referencing a Commissioner rather than a Commission, however, most did not explicitly highlight this was a preference between the two, and should not therefore be interpreted as such.

The main concern in relation to Option 1 was that the creation of another Commission(er) had the potential to add even more bureaucracy and cost to what was described as an already substantial Commission(er) landscape in Scotland, with risks of overlap/duplication of effort. The creation of a new Commission(er) may affect the roles and functions of other Commission(er)s and public bodies, it was felt, including potential transfer of duties and resources from them to the new body, which may cause confusion for both rights holders and duty bearers.

On this basis, some argued for strengthening the powers of existing Commissioners or giving them a broader reach to include people with learning disabilities and neurodivergent people, or putting in place mechanisms to ensure that existing Commissioners were paying due regard to issues that affect people with learning disabilities and neurodivergent people.

For some of those who did not support the ‘new’ body for the above reasons, there was clear evidence that they felt money should instead be used to support existing services or the development of more resources (i.e. the creation of a new body would divert resources from front line services):

“Better outcomes may be achieved by focusing spending in areas which have a more direct and immediate benefit for those with learning disabilities, autism and neurodivergence.” (Mental Health Organisation)

Another caveat to support for Option 1 was the perception that there was unlikely to be sufficient resource to allow it to operate to its full potential. The time needed to set up a new body was also cited as a reason for marginal support.

As with the Bill overall, a minority view was that the Commission(er) must not conflate autism with learning disabilities. It was suggested that there should be separate Commission(er)s for neurodivergence and learning disabilities, or that dedicated Depute Commissioners or departments (sitting within one Commission or below a single Commissioner) would be required to ensure the two populations were best served. It was also suggested that a pan-disability Commissioner could be created, with specific Depute Commissioners appointed for learning disabilities, autism and neurodivergence.

A small number of respondents indicated that they felt more information on the specific roles and responsibilities of the proposed new Commission(er) was necessary to allow them to comment meaningfully on this option, and hence reserved judgement.

Option 2: Better Resourcing and Additional Duties for an Existing Body

There was less obvious support in the qualitative feedback for Option 2. Where mentioned, however, respondents mainly felt that existing bodies should already be taking more robust action to hold public bodies and public services to account with regard to issues affecting people with learning disabilities and neurodivergent people (and better enforcing equalities legislation more generally).

A small number supported this option on the basis that it would allow for harnessing of existing skills and expertise, as well as pooling of resources and the potential for intersectional learning. Similarly, a small number supported bolstering existing bodies on the basis that this was less divisive and would mean that people with learning disabilities and neurodivergent people were not treated as ‘separate’ i.e. by building on an existing model, individuals would not be segregated/isolated/ excluded from the work of other bodies.

A small number also supported this option on the basis that the alternative of a new Commission(er) would not add value to the existing landscape (as above). Given constraints around finite resources, it was considered more resource efficient to better resource an existing Commission than to create a new one:

“We support Option 2, strengthening existing bodies such as the Mental Welfare Commission to expand their role. It is our view that the accountability landscape is already a complicated one, and that the addition of a Commissioner specific to this Bill would exacerbate that without clear benefit to those most in need.” (Mental Health Organisation)

In contrast, an equal number felt that there were risks of people with learning disabilities and neurodivergent people being overlooked or not receiving the attention that was needed if further accountability responsibilities were allocated to existing bodies. These respondents questioned if any existing Commission(er) would be able to give adequate focus and resources to the issues affecting people with learning disabilities and neurodivergent people and their families.

Similarly, respondents were concerned that the roles of existing bodies may become diluted or compromised if new responsibilities linked to the LDAN Bill were to be subsumed into their existing roles:

“I do not think that the issue can be subsumed into the brief of an existing Commissioner because the remit is very wide ranging and developing quickly. It’s hard to see how an existing Commissioner could take it on without compromising their existing or new brief.” (Family/Friend/Carer)

The other main concern linked to Option 2 was that existing bodies potentially did not hold the necessary skills, experience or knowledge required to address the needs of those covered by the LDAN Bill.

There were also views that existing Commission(er)s may lack resources needed to dedicate time specifically to the groups and issues covered by the LDAN Bill.

Option 3: Champions and Advocates within Scottish Public Bodies

As above, many respondents supported the creation of local champions and advocates to work alongside a newly created Commission(er), with the view that this would create the right balance of central oversight and local enforcement. If done in a meaningful way, this was seen as a good method of involving people with lived experience in raising awareness of their rights and promoting respectful cultures in various public bodies (in a more effective way than adoption of Option 1 alone).

Views were put forward that any such champions must be dedicated roles rather than this responsibility being ‘added on’ to existing roles:

“The champions and advocates within public bodies should have this as their sole focus to ensure it is done effectively. It would include everything from setting up appropriate systems within each body, to ensuring all staff are trained and kept up-to-date, and support is given to any neurodivergent person taken on.” (Family/ Friend/Carer)

Suggestions were made that champions could usefully be identified from within existing lived experience communities, with views that DPOs would be well placed to assist with identification of suitable champions.

The main concerns regarding Option 3 were that any outputs or directions from these individuals would potentially be interpreted as ‘guidance’ or ‘advice’ which would be more easily ignored than those stemming from a more formal body. The lack of objectivity and independence of any such champions or advocates was also questioned, and it was suggested that their lack of impartiality may mean that they could not be seen as sufficient agents for overseeing accountability.

A handful of respondents made very specific comments that they disliked the use of the word ‘champions’ which they felt was patronising and off-putting.

Option 4: Better Resourcing for Existing DPOs

Many respondents supported this option, mainly on the basis that there was already significant knowledge, skills and expertise within these organisations which should be harnessed:

“Existing organisations already have the knowledge and expertise and are led by neurodivergent people, all they need is more visibility and funding to reach a broader audience and create partnerships with public bodies.” (Neurodivergent Individual and Family/Friend/ Carer)

There was agreement that DPOs currently lacked the resources required to have maximum impact but that, despite this, they often provided the majority of support and information received by people with learning disabilities and neurodivergent people, and noted that this was often more effective than that provided by statutory services. Giving them greater resource was, therefore, seen as an essential way of better promoting and meeting the needs of people with learning disabilities and neurodivergent people, as well as potentially enabling them to meaningfully participate in statutory services, policy making and training.

If this option was taken forward, the Scottish Government was urged to ensure that national funding for DPOs takes account of the needs of people beyond the central belt (i.e. to include DPOs in remote and rural areas), as well as to consider peer-led organisations and other local or less visible organisations that may not necessarily follow the traditional DPO model.

Again, however, this option overall was not necessarily viewed as an effective solution for accountability. Instead, better resourcing DPOs, and allowing them to work more closely with statutory providers (for example, through advocacy and training) would potentially see a more systemic shift towards neuro-affirming/ inclusive outcomes in a more general sense, it was felt.

There was also some resistance to this option (which some described as ‘outsourced support’) on the basis that central and local governments should be the ones providing services and being held to account if they failed. It was argued that the third sector, or individual third sector organisations should not be expected to hold the Government or public bodies to account, that this should be the responsibility of the Government, regulators and/or any identified Commission(er). There were also concerns that third sector organisations or DPOs that receive Government funding cannot be considered as fully independent or impartial.

The other main concern linked to Option 4 was that there may be potential for inadvertent bias, depending on the focus/remit of different organisations, with a risk that some groups may be prioritised over others. Overall, however, there was a strong sense that respondents (especially individuals and third sector partners) supported more investment in DPOs and grass roots community level efforts to ensure that impacts of the legislation were felt directly on the ground.

Option 5: Supporting Good Practice

In line with comments made throughout the consultation, this option was supported by many respondents on the basis that working continuously with people with lived experience (like the LEAP) to produce national standards and guidance was the best way to help people understand the needs and wishes of people with learning disabilities and neurodivergent people and to uphold their rights.

While widely supported, however, this was seen as a fundamental requirement which should underpin all activity resulting from the Bill rather than being an effective mechanism for accountability in its own right. Indeed, some felt that this option did not constitute an accountability mechanism and it was disingenuous to suggest that it did.

Similarly, suggestions were also made that this option should work alongside others. For example, it should be integral to the role of a Commission(er) to work with local people and partners to provide guidance and support.

While largely supported, comments were also made that much already existed to support good practice but that this was not currently recognised or supported by the new Bill. For example, the ‘Charter for Involvement’ was cited as an influential co-produced tool already in existence which could be better promoted and understood through recognition and inclusion in the LDAN Bill and guidance. Instead of ‘more’ guidance, therefore, better use and promotion of existing guidance was urged.

Few respondents gave explicit reasons for not supporting this proposal except to express that it did not appear to constitute an accountability mechanism without additional oversight and enforcement action to complement it.

Overarching Comments

The main overarching comment was that, whichever accountability mechanism was used, it must be taken forward with, and be representative of, people with diverse lived experience (including their families and carers and including children and young people). In essence, respondents felt that any new powers or body created should be co-designed by people with lived experience, drawing on their experience, and must also be accountable to them.

Several respondents also stressed that there was a need for a clear plan with regards to how the Government would monitor and evaluate the success of the proposals presented in the LDAN Bill, (including any accountability measures), providing opportunities for challenge where duties in the LDAN Bill and other relevant legislation were not met. Having regular public reporting and feedback mechanisms would increase transparency and public accountability of how well public bodies uphold the rights of people with learning disabilities and neurodivergent people, it was suggested, as well as robust monitoring and evaluation.

Several respondents stressed that any ‘new’ accountability measures or strengthening of existing measures must be adequately advertised. This would be necessary to ensure people with learning disabilities and neurodivergent people were fully aware of their rights, what should be done to enforce them, and who to contact for accountability concerns.

There were also many comments that whichever option was selected it must be more robust and better enforced than existing measures:

“There is a real risk here that the Bill will just add another layer onto the complex existing system which is failing without improving matters… Whatever is put in place, it needs to be ensured that there are more teeth, legislative power and with adequate financial and other resources to ensure meaningful change.” (Neurodivergent Individual and Family/Friend/Carer)

A small number of respondents indicated that it may be more appropriate to wait for a Bill to be passed and implemented before taking action regarding accountability. Conversely, a small number felt that accountability had not been sufficiently built into the proposals as currently drafted. Others simply noted that they were unclear about if or how any of the current proposals would actually deliver effective change.

Other Options

A number of other options were put forward by respondents, but many were again linked to earlier comments such as the need to better enforce existing legislation or ensure that existing accountability mechanisms/strategies were working rather than introduce new measures. Indeed, there was a strong sense that none of the options may make a difference unless there was first a better understanding of why current mechanisms were not working.

Finally, specific ‘Other Options’ that were presented included:

• Local (authority) solutions to accountability rather than a single national model that allow measures to be tailored to local needs;
• Individual organisations having flexibility to create their own policies around supporting established rights;
• Having a locus within government which has oversight for specific areas (e.g. one focussed specifically on children, young people and their carers);
• Having a dedicated ‘rapporteur’ or champion within the Scottish Human Rights Commission to address learning disability, autism and neurodivergence legislation compliance/non-compliance;
• Legal empowerment initiatives to educate and empower people with learning disabilities and neurodivergent people about their legal rights;
• Peer support and mentorship programmes that foster peer networks and provide support, advocacy training, and mentorship (for example, similar to autistic peer support roles currently in place in England); and
• Introducing fines and professional sanctions as a means of enforcement/ penalties for non-compliance with relevant legislation.