Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 5: Independent Advocacy

Introduction

The consultation document set out the different legislation and approaches related to the provision of free independent advocacy in Scotland. Despite the importance of independent advocacy, with it being one way that people can receive help to understand and access their rights, the difficulties with accessing this support and low levels of use among those who are entitled to it was outlined.

Although the consultation document stated that the proposals for the LDAN Bill would not include a broad right to independent advocacy for people with learning disabilities and neurodivergent people, this was because legislation for advocacy would depend on the outcomes of the proposed changes to other legislation. Rather, feedback was sought on the following two proposals:

• Strengthen and improve access to existing advocacy by (a) making regulations around the provision of independent advocacy for people with learning disabilities and neurodivergent people; and (b) placing a duty on all public bodies to ensure that all people with learning disabilities and neurodivergent people are given information about advocacy and how to appoint their own independent advocate to support them.
• Improve our understanding of Independent Advocacy by identifying and gathering evidence on specific circumstances where a right to independent advocacy could make a difference, and consider whether the Bill could provide some specific legal rights to free independent advocacy in these circumstances.

Main Findings

Overall, 460 respondents commented at this section. The most popular choice for respondents was for both proposals to be implemented together. It was felt that both were needed to provide a more robust and consistent approach.

Where respondents indicated a preference for a single proposal, Proposal 1 (i.e. to strengthen and improve access to advocacy) was slightly more popular, although roughly similar proportions of respondents supported each (at around half of those who responded).

Proposal 1: Strengthen and Improve Access to Advocacy

Overall there was solid support for the use of independent advocacy generally, and for improving access to this. It was felt that improved access could have an immediate improvement to people’s lives. It will help them to navigate complex systems, understand information and their rights, have their voice heard and choices respected, and result in better outcomes. It was also noted that UNCRDP made provisions for access to advocacy. In addition, it was also noted that this support could aid independence and ease some of the pressure on family members who often need to provide informal advocacy support.

Respondents outlined the current low levels of awareness, as well as the difficulties and barriers they faced in trying to access advocacy and in accessing services without advocacy support. This included long waiting lists for existing advocacy services, and many raised concerns over the different levels of availability in different areas, with some again using the term ‘postcode lottery’ to describe current provision:

“Overall access to independent advocacy is limited by long waiting lists and individual advocacy is offered mostly at crisis point or in formal process-focused occasions.” (LDAN Support/Representative Organisation - Learning Disabilities)

It was also noted that individuals with the most severe difficulties (either long-term or caused by situational distress) were often the least likely to be aware of, understand, able to access and make good use of advocacy services. It was suggested that the process was currently too onerous for vulnerable people to navigate.

As a result, many respondents suggested that advocacy should be made more accessible and readily available. There was also strong agreement with a duty for all public bodies to ensure that all people with learning disabilities and neurodivergent people are given information about advocacy and how to appoint their own independent advocate. It was felt that such signposting would raise awareness, ensure people understood what this was and how to access it, and would boost uptake.

A few respondents offered practical solutions for signposting, with one mental health focused organisation suggested a ‘No Wrong Door’ approach or single point of entry model whereby the first organisation the person comes into contact with has a responsibility to support them to make contact with the correct service(s), including independent advocacy. A few respondents also called for a central resource or local ‘hub’ for advocacy so that people with learning disabilities and neurodivergent people know who to turn to. Similarly, the success of ‘one stop shops’ was discussed, with respondents suggesting that a similar model could be adopted for advocacy.

Several organisations and a few individuals also suggested there was a need for advocacy to support people during all challenging life stages and events, and this should not be restricted to care and mental health (which is the focus of current legislation being reviewed in this respect). Others identified specific systems and sectors where advocacy would be helpful, which included:

• Health;
• Housing;
• Finances;
• Benefits System;
• Child protection;
• Guardianship;
• Education;
• Gender transition;
• Gender based violence;
• Community Inclusion;
• Workplace; and
• Legal system and/or Criminal Justice.

While wider availability of independent advocacy was largely supported, respondents (particularly organisations) raised concerns about the sector’s ability to increase capacity and meet the needs of those covered by the LDAN Bill. It was highlighted that demand for advocacy services already outstripped supply, that some providers are limited in their potential client base by their funding agreements, and that they may not/do not have the necessary skills and experience to support people with learning disabilities, autistic people and neurodivergent people. As such, it was felt that greater funding, staffing levels, training, and resources would be needed to increase current capacity and to provide services suitable for people with learning disabilities and neurodivergent people. A few organisations also suggested that there should be a full financial costing attached to the new Bill.

Some organisations were concerned about relevant bodies being obliged to signpost and offer advocacy services but not having the available funding or resources to deliver this in either the short or long term. Indeed, one organisation noted that the overstretched nature of the advocacy sector might make them reluctant to share information about resources or services they know are underfunded or have long waiting lists.

This concern over resources and funding was echoed by many individual respondents who highlighted how under-funded and under-resourced the services currently are.

Many respondents also agreed with the need for a consistent definition of ‘independent advocacy’, while some organisations suggested that collective advocacy be championed alongside independent advocacy.

Similar to the views expressed elsewhere in the consultation, many respondents also agreed that working with a range of organisations and consulting with those with lived experience would prepare a solid foundation on which to build the LDAN Bill and any developments needed for advocacy. Again, however, respondents were keen to stress that any consultation with and involvement from those with lived experience needed to be meaningful.

Reasons for Disagreeing with Proposal 1

Some respondents caveated their support for Proposal 1 or disagreed with it because it was felt the details in the consultation document were not comprehensive enough. The proposal was felt to lack detail around the aims and scope of the potential legislation or regulations that could be introduced, and required clarity around what the regulations might be and do. It was also felt that the proposal would not have the desired impact unless it was accompanied by additional provision for suitable advocacy services and capacity.

Many respondents were also strongly against the fact that the Bill would not make provisions for a broad right to advocacy services for people with learning disabilities and neurodivergent people. Some suggested that the LDAN Bill would be a more appropriate place to include this than mental health legislation (as had been suggested in the consultation document):

“We are therefore disappointed that a broad right to advocacy for the people covered in this bill has not been proposed and we see it as a huge missed opportunity. It could have the biggest impact in improving outcomes for learning disabled and neurodivergent people.” (Education Services)

A handful of respondents, both individuals and organisations, also voiced concern over people with learning disabilities and neurodivergent people being included under the label of ‘Mental Disorder’ (discussed more at Part 3: Section 2). It was noted that the current situation could lead to differences in service provision where some organisations included learning disabilities, autism or other neurodivergent conditions under the label of mental disorder while others (including some advocacy services) would not provide support as they did not consider the condition as a mental disorder.

Proposal 2: Improve our Understanding of Independent Advocacy

Proposal 2 was interpreted in different ways. Some respondents were supportive as they understood this to mean measures would be implemented to improve individuals’ understanding of independent advocacy, when and how this can be used, how to access it, etc. This was considered to be highly necessary and valuable. A few also preferred proposal 2 as they interpreted this as being more applicable for individuals who did not have a mental health problem.

“I agree with option 2 to better understand how advocacy can help. I wouldn't know where or how to access an advocate for neurodiversity. Because I am not receiving any support from services I don't know about any help.” (Neurodivergent Individual)

Others thought this proposal meant building the Scottish Government’s understanding of where providing a right to independent advocacy could make a difference. Again, this was a sentiment that was generally supported in order to develop the sector and improve access and provision.

It was suggested that more needed to be done to support the most vulnerable people where and when most required, and that developing an understanding of this to develop specific legal rights to advocacy in these circumstances would be the best use of limited resources.

Reasons for Disagreeing with Proposal 2

Those who disagreed with Proposal 2 generally did so because they felt it was suggesting restricted access to advocacy. One health service organisation referred to this as ‘gatekeeping’. Both organisations and individuals were vocal that the Bill should provide a legal right to free advocacy in all circumstances where it is needed and not just in specific cases for specific people. There were concerns this could further exclude vulnerable people/groups and negatively impact those who do not fit the specific criteria:

“We would not support Proposal 2, which seeks to restrict the areas where independent advocacy might be applied to very niche areas.” (LDAN Support/Representative Organisation - Autism)

Proposals Not Ambitious Enough

Both those who agreed in principle with the proposals, and those who opposed both, argued that the proposals were not ambitious or strong enough, and were not sufficient to ensure independent advocacy was supported, promoted and used. These respondents felt that much more needed to be done in this respect, both to strengthen the section itself and improve provision, and to ensure independent advocacy is provided at the right time and when needed to ensure individuals understand and can advocate for their best interests. This would include ensuring they are supported to understand their rights to independent advocacy in order to make an informed decision about its use.

Other Comments and Considerations

A wide range of additional comments were provided or issues highlighted that respondents felt needed to be given further consideration.

Funding, Resources and Training

One of the main issues discussed (and covered above) was the need for more funding and resources for the sector. Many respondents called for ongoing financial commitment should either proposal be taken forward.

Another common issue raised by respondents (including a range of individuals and organisations) was the need for more advocates generally, for more specialist advocates (i.e. those trained and skilled in supporting people with learning disabilities and neurodivergent people), and a need for additional and consistent training. This was all considered necessary in order to provide the best possible service. Some respondents also raised concern about staff turnover and were keen to place emphasis on staff retention within the industry to ensure training budgets were not ‘wasted’.

Several respondents supported the idea of developing advocates within the community, or peer advocates. It was felt these options could be helpful for individuals and support the existing formal services which are unable to meet demand. Others were keen to highlight that family, friends and carers were ready and willing to be trained in advocacy and could provide a valuable additional resource for new or existing services. It was noted that these groups were already advocating for others, that they already knew their needs and had a pre-existing relationship with the person. A few respondents also recommended the recruitment of advocates with learning disabilities or neurodivergence. They felt that this would add significant value to advocacy offered.

Advocacy Should be for Everyone

Some respondents, both individuals and organisations, argued that independent advocacy should be available for anyone who needs it, irrespective of demographics or official diagnosis. It was also suggested that families, siblings and parents/carers should have access to independent advocacy in order to get support.

A few third sector organisations also championed free provision of independent advocacy for the groups they support.

Several respondents also noted support of the recommendation in the Rome Review of Mental Health Law in Scotland which called for anyone with a learning disability to be automatically entitled to support from an independent advocate unless they actively choose to opt out of this. A few did raise concerns over such entitlement however, including capacity issues to cope with increased entitlement, and the potential for discrimination against those who do opt out.

A few organisations were also concerned about, or questioned who should be offered advocacy services. Common with suggestions at Part 1, there were calls to ensure neurodivergence was clearly defined in order to support eligibility for independent advocacy.

Other Issues

It was suggested that there needed to be consistency in the advocate working with an individual (i.e. avoiding turnover of those involved). Respondents stressed that it can take time to build a strong enough relationship to ensure full and successful advocacy, and the potential for turnover in advocacy workers, or being allocated a different advocate for appointments can also act as a barrier for many people with learning disabilities and neurodivergent people taking up advocacy services.

Several respondents called for a person-centric service where advocacy is led by individuals and their need, and not by provision/capacity or influenced by external factors or figures. Respondents also suggested that advocacy should address early, ‘smaller’ or minor issues - providing support to those that need it and at an early stage, before issues become more significant, complex and distressing.

A few respondents stressed the need to ensure that independent advocacy was truly independent, not controlled, funded or incorporated within local authorities, social work, or health and social care providers. Respondents also wanted to ensure that advocacy services were not open to bias or influence from others, and that the system could not be abused or exploited by self-serving advocates.

Several highlighted the need for assessment of systems currently in place, the use of quality assurance mechanisms, and the development of ongoing feedback methods to ensure that those accessing advocacy services can inform quality standards and any future service development. Others, both individuals and organisations, called for regulation in the provision of advocacy and related services in order to ensure quality and suitability of all services. It was unclear, however, how a regulated sector would combine with the above calls for peer and community advocates, as well as greater recognition of parent/carer/family/friends acting as advocates.

Finally, several respondents indicated they did not have enough understanding or experience in this area to comment, while others felt the proposals were unclear and difficult to understand and so they felt they could not offer informed views.