Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 6: Relationships

Introduction

To ensure that children, young people and adults who are neurodivergent or have a learning disability are able to develop and maintain relationships and get the support they need to live a healthy, safe and fulfilling life, the consultation set out a number of proposed actions, including:

• Proposal 1: Access to Independent Advocacy where it would assist in matters relating to relationships.
• Proposal 2: Data Collection and Reporting specifically on gender-based violence affecting women with learning disabilities and on the number of parents with learning disabilities in Scotland, including where their children have been removed from their care.
• Proposal 3: Inclusive Communications to assist in situations where a person with learning disabilities is at risk of having their child removed from their care and where a neurodivergent person, or person with learning disabilities, has disclosed gender-based violence or abuse and is interacting with the justice system.
• Proposal 4: National and Local Strategies to ensure that the Whole Family Approach is being implemented to proactively support neurodivergent parents and parents with learning disabilities and that local authorities and Police Scotland are meeting their duties to support people with learning disabilities and neurodivergent people to be involved in their communities and to feel supported in reporting crimes, including gender-based violence and abuse.
• Proposal 5: Accountability including the possible creation of a new Commission(er) specifically for people with learning disabilities and neurodivergent people which, among other things, would have the remit to investigate ongoing and historic cases of child removal from parents with learning disabilities, based on their disability.

Main Findings

Overall, 360 respondents provided feedback at this section, with most agreeing with all five proposals.

For some individuals, there was evidence of confusion around the scope of the proposals put forward and also some queries related to how they differed from material covered elsewhere in the consultation. There was also little feedback explicitly in relation to the Whole Family Approach and some indication that respondents were unclear what this meant.

At this section, several respondents also gave feedback which was not specific to any of the proposals but was more overarching. These mainly focussed on the importance of people with learning disabilities and neurodivergent people having better access to relationships, sexual health and parenthood (RSHP) education on a ‘lifelong’ basis (i.e. from early years, primary, secondary and tertiary education and throughout adulthood). Indeed, many respondents highlighted that a right to such education was included in the UNCRC and must be upheld as a fundamental right.

Overall, there was consensus that all individuals, regardless of their disability or neurodivergence were entitled to positive, strong and meaningful relationships and should be facilitated to achieve these. On this basis, all proposals received relatively strong support. Respondents welcomed a human rights-based approach to ensuring people with learning disabilities and neurodivergent people are supported to achieve a wide range of meaningful relationships in their lives as well as mechanisms being in put in place to protect some of the most vulnerable adults and children.

Proposal 1: Access to Independent Advocacy

Several respondents reiterated their feedback given elsewhere in the consultation that access to advocacy was essential in allowing individuals to live lives to their full potential, especially for people with learning disabilities.

Access to independent advocacy was particularly important in relation to the specific scenarios set out in this section (i.e. for those experiencing or disclosing gender based violence or abuse and those facing the threat of their children being taken into care). In both situations respondents noted that people with learning disabilities and neurodivergent people face challenges in navigating complex systems and barriers to effective communication:

“Independent advocacy is paramount when a neurodivergent individual or someone with learning disabilities discloses gender-based violence or abuse. These individuals often face unique challenges in seeking justice and support due to barriers in communication, comprehension, and navigating complex legal systems. Advocates play a crucial role in ensuring that their voices are heard, their rights are upheld. By providing this service, the advocacy partner can find themselves finally being heard, possibility for the first time, and they realise that they have a say.” (Advocacy Service)

More generally, the right to independent advocacy was something that respondents felt should be prioritised beyond the conditions and circumstances described in this section of the consultation. Most viewed it as a provision that could/would be useful for facilitating relationships (both to maintain existing relationships and to build new ones) at various life stages throughout both childhood and adulthood, however, there were few specific examples given of where respondents felt it would help in terms of relationships.

One of the main things that was raised as being important in relation to advocacy was consistency - i.e. respondents wanted advocacy workers that were known to them (rather than always having changing advocacy workers). It was also stressed that both collective and individual advocacy was needed (i.e. representing groups as well as individuals). Others suggested that a liaison person for individuals, who could build up a relationship and understanding of the individual over time and support professionals to gain a better understanding of the person, would be welcomed. It was felt such a person could also help to provide continuity of care.

Comments were also made, however, about the potential danger of over-professionalising advocacy. Respondents were concerned that this may exclude valuable, cost-effective and accessible sources of community support, peer support and family support, all of which were seen to be equally valuable to individuals and were important to consider, uphold and invest in.

Advocacy in the context of relationships was seen as something that should not be restricted to ‘reactive’ support but was equally important as a ‘proactive’ provision (i.e. support was needed before situations escalated and required resolution). Early intervention was viewed as the best approach to supporting and building relationships for and within neurodivergent and learning-disabled families.

Similarly, some expressed views that advocacy should be offered to parents (where needed) regardless of whether or not they have a diagnosis.

Other common caveats and concerns included that:

• Advocates must be well trained and have lived experience, where appropriate;
• It was important to support children and young people, where they hold differing views from those of their parent or carer, with independent advocacy;
• Women and girls should have the right to same sex carers and, where they have suffered from abuse, same sex Advocates;
• Careful monitoring would be required to ensure that Advocacy does not become an oversubscribed resource;
• Additional funding was needed for advocacy support more generally; and
• There may be some lack of understanding of certain conditions/populations among advocacy providers and, in such cases, advocacy services should work hand-in-hand with third sector providers to ensure that needs are met.

Proposal 2: Data Collection

There was strong support for additional data to be collected with regards to gender-based violence affecting women with learning disabilities (as recommended in Unequal, Unheard, Unjust) as this was seen as a gap in existing evidence which, if filled, would help with improving services and responses to support this vulnerable group.

Some respondents also felt that data collection was required for all gender-based violence and not only that perpetrated against females, with several respondents highlighting male vulnerabilities too. In addition, several respondents supported the collection of a broader range of data relating to exploitation and harm affecting people with learning disabilities and neurodivergent people, and felt that this would be equally useful:

“We would highlight the need to expand beyond a focus on gender-based violence and abuse, to consider the potential for exploitation of people with learning disabilities in this area. This would include financial exploitation, online sexual exploitation/blackmail, and coercion into criminal activity.” (Mental Health Organisation)

Several respondents also stressed that data collection, analysis and reporting must be sufficiently detailed to account for differences within learning disabilities, autistic and neurodivergent communities (including different neurodivergent conditions and different demographic and protected characteristics). Many argued for a more intersectional/nuanced approach to the one proposed (and which also had provisions for data relating to children and young people).

There were fewer comments overall with regards to data collection on the number of parents with learning disabilities in Scotland, including where their children have been removed from their care. Where people did provide feedback this was broadly supportive on the basis that any research in this area would help to fill existing gaps in understanding and inform progressive change in the future. Some respondents suggested that data in this respect should not be restricted to quantitative data collection but might include narrative feedback from parents with lived experience, as well as (potentially) children who had been removed (including when they become adults). In addition to collecting data on such cases, more preventative action and support was needed, it was suggested, to minimise cases of child removal in the future.

Further caveats to support or variable views that were put forward included that:

• Data collection and reporting on gender-based violence should be extended to include autistic and neurodivergent people;
• Existing diagnostics methods for learning disabilities may not be the most reliable and valid form of diagnosing a learning disability and more holistic approaches may be required to ensure that all relevant individuals/cases gender-based violence are accurately reported/recorded;
• There was a need for improved/relevant data sharing across and between services in general; and
• It would be essential to uphold privacy and not cause unnecessary interference to people’s lives solely for the purposes of research, i.e. it must inform policy and service planning.

Another common theme was that data collection would only be useful/worthwhile if the data were acted upon.

Proposal 3: Inclusive Communications

Again, people gave very general feedback on this proposal, often consistent with what had been raised elsewhere in the consultation. Some suggested that accessible information (in the format needed by the parent) should be provided for all parents where there was a risk of a child being removed from their care, not only those covered by the LDAN Bill:

“Any parent, whatever their reading ability, literacy and understanding must have information provided in a way they understand when there is a risk of having their child removed from their care. Not only people with LD.” (Health Service)

Several respondents also explicitly agreed that inclusive communications must be made available to all those in the situations described by the consultation document to help them navigate systems which were often complex and confusing, such as the justice system^[3]. It was felt this was particularly important given the increased risk of neurodivergent individuals being the victims of crime and their vulnerability to miscarriages of justice.

A specific point of note was raised in relation to social work contact with parents, with suggestions that communications were not always as clear as they could be at present, in part because of a lack of access to assessment of communication support needs.

Echoing comments made in the substantive section of the consultation on inclusive communications, respondents again stressed that it should not be incumbent on individuals to seek information, but that it should be proactively provided. Similarly, awareness of information and rights was also seen as equally as important as ensuring that they were delivered in an accessible way. A small number of respondents also, again, expressed views that inclusive communications must include the provision of advocacy, where appropriate, to ensure that the best ways of communication could be triangulated for the individual.

Comments were also made that this proposal, and others, needed to recognise that women of faith, women in minority ethnic groups, and women with varying sexual and gender identities were all in scope and may be disproportionately at even greater risk of violence, abuse or harm. Respondents suggested that separate provisions may therefore be appropriate to cover their needs.

Other comments included that:

• Inclusive communication should be mainstreamed and offered to parents regardless of whether or not they have a diagnosis of some kind;
• It was not clear who was included in the reference to “support provided by professionals who have specialist training in learning disabilities”; and
• Any information/training/communications must be designed in collaboration with people with lived experience.

Proposal 4: National and Local Strategies

The majority of comments on this proposal were linked to local authorities setting out how RSHP education was provided. Several respondents cited examples of a lack of assistance, education and support around developing relationships, especially romantic and sexual relationships. Some commented that there was a current lack of understanding of the importance of/barriers to intimate relationships among people with learning disabilities and neurodivergent people and felt that key to this was early and effective RSHP for individuals, supported by well trained professionals:

“Society also thinks people with learning disabilities should not have sexual relationships. Why not? We are just like everyone else. We want to love and be loved. We have the right to have relationships. We may need support and good information and we might make mistakes but that is also our right.” (LDAN Support/Representative Organisation - Learning Disabilities)

A small number of respondents gave personal testimony (either of their own experiences or of women they were representing) to again highlight that a lack of education around friendships and relationships meant that they were often vulnerable to coercion and harm. Improved education and advice around such things as prevention, protection and safety, as well as support (e.g. advocacy or outreach workers) and someone to provide emotional support was seen as a way of giving these women control over their relationship choices/support with their decisions as well as keeping them safe. This was important more broadly, it was suggested, to protect against harm from relationships as well as abuse from people who should be looking after them, e.g. support workers or family members.

Several others commented that sexual education courses should be more easily accessible, along with more one-to-one support from advocates or learning disability nurses (with suggestions that information on learning disability nurses needed to be more accessible and widespread to ensure that people know what services they can offer or how to access these). While mentioned in the advocacy proposals, and while this was an important area where advocacy support was particularly welcomed, the consensus was that RSHP needed to extend beyond advocacy provision alone.

Broader comments linked to RSHP included that the Scottish Government guidance must be sufficiently clear to enable local authorities or education authorities to deliver the duties under the Bill and that sufficient resourcing must be in place to facilitate delivery (including of RSHP).

Only very few respondents commented on Police Scotland setting out how people with learning disabilities are provided with specialist support to report crimes, including gender-based violence and abuse. Where people did give a view, this was broadly supportive and one suggestion was made that it may be beneficial for Police Scotland to work in a multiagency way to achieve this.

While there was little direct feedback on the other proposals, comments were made that the combination of proposals presented here and elsewhere should help to ensure that public duties/obligations were being met.

Many respondents referenced their earlier responses regarding local strategies, including support for authorities to set out how they provide services to people with learning disabilities and neurodivergent people to enable them to be active and involved in their communities. Most feedback on this proposal was linked to suggestions around what strategies might cover, including:

• Planning and actions linked to education, advocacy, data, and accountability measures;
• An action for the Scottish Government’s National Strategy to support more promotion and education of the public;
• Separate sub-strategies for women with learning disabilities and neurodivergent women which would focus exclusively on their unique challenges and needs;
• Clear monitoring and evaluation plans;
• Local RSHP curricular content; and
• Minimum service provision and standards linked to a national strategy.

Comments were also made that the national RSHP resource currently being used by teachers had been updated in recent years and was a useful resource; however, lack of use/delivery in schools may be the bigger issue. As such, they felt that local strategies should/could include a commitment to delivering this education (rather than the focus being on developing anything new). Indeed, one Health Service organisation suggested there should be a requirement for local authorities to provide evidence delivery and monitoring of RSHP, and to ensure that quality assured Continuing Professional Development (CPD) on this is available.

A minority indicated that local authorities already report on the range of services and supports available to their residents, including children and young people. There was also said to be a great deal of work already being undertaken within the education curriculum around RSHP, including consideration of how learners with additional support needs are supported.

Where people did not agree, this was mainly on the basis that strategies were seen as ineffective unless supported by some form of monitoring or accountability to ensure that they were delivered upon. Some concern was also raised that while national and local strategies were welcomed, they could not be implemented by existing teams as they were seen as already overworked/operating beyond capacity.

It was again noted that national and local strategies must be designed and produced by the people they are written for.

Proposal 5: Accountability

Those who touched on this proposal were split. As with the main section on accountability (at Part 4), some were supportive of either a new or existing body having the powers to investigate both ongoing and historic cases of child removal from parents with learning disabilities, based on their disability. Others, however, expressed that a new Commission(er) would add unnecessarily to the already complex accountability landscape and would not be an effective use of resources.

The main feedback given in response to this proposal, however, was testimony of the negative experiences families had due to a child being removed and perceptions that there was an urgent need to change or reform current practices which could be both distressing and frightening (for children and their families in equal measure).

Several other respondents did not comment on accountability directly, but used this section to put forward views that children should not be removed from parents with learning disabilities. Rather they felt parents and families should be better supported.

Some who supported the principle of accountability also suggested that alternative or complementary measures could be taken with regards to the issues discussed in this part of the consultation. This included, for example, both the Children and Young People's Commissioner for Scotland and the Child Health Commissioners Group potentially overseeing issues associated with child health and wellbeing.

Others, however, again stressed that the proposals may potentially introduce another tier in the accountability chain without being able to influence outcomes.

Other Comments and Considerations

Scope

Several comments were made that the proposals here appeared to focus mainly on people with learning disabilities, however, could well be extended to others, including autistic people who may also be disproportionately at risk of abusive relationships, sexual abuse and domestic abuse, victimisation, harassment, assault, and bullying, etc.

Similarly, some commented that the proposals did not go far enough in considering the very unique needs with respect to relationships that would be experienced by different individuals and groups covered by the Bill, for example those with PMLDs.

Wider concerns were linked to the fact that the relationship challenges faced by people with learning disabilities and neurodivergent people went beyond extending provision of RSHP education, as proposed. Similarly, the proposals appeared to focus solely on instances of acute crisis, such as the removal of a child or gender-based violence, rather than relationships more broadly. A separate ‘Relationship Strategy’ may be a more appropriate way to address issues linked to relationships for people with learning disabilities and neurodivergent people, it was suggested. While this could include intimacy and romantic relationships, it should go beyond this to include friendships and community belonging. This might also include strategies for ensuring that those beyond the public sector also play a part in supporting relationships. In addition, some of the more fundamental ‘relationship’ issues facing these communities, and which could/should usefully be addressed in the Bill were said to include issues with bullying, extreme loneliness and social isolation often experienced by people with learning disabilities and neurodivergent people:

“Whilst these proposals are in themselves good proposals they will have very limited affects in helping neurodivergent people and people with learning disabilities have healthy and fulfilling relationships and little impact on associated loneliness, social isolation, poor mental health, and trauma.” (On behalf of a LDAN person, and Family/Friend/Carer)

Several respondents suggested that issues linked to relationships were more socially embedded and required to be addressed in a systematic way over the long term and thus questioned if a Bill was the best mechanisms for achieving the wider social and systemic change that was required (especially around reducing stigma and discrimination). In a similar vein, several respondents felt that legislation was not the appropriate mechanism through which to attempt to achieve change.

Children and Young People

There were specific concerns regarding further mechanisms that were needed to support children and young people in particular. Respondents were concerned that the proposals largely focused on adults and therefore may not achieve the scale of change necessary to address the barriers that exist to relationships for children and young people with learning disabilities and neurodivergent children and young people.

Respondents suggested that young people specifically needed more help with such things as how to deal with stigma, harassment and bullying, as well as making friends and socialising with others “like them” or of a similar age in their wider communities.

Suitable Social Spaces

It was felt that relationship barriers were compounded by a lack of suitable social spaces tailored to both children and young people’s specific needs and adults’ needs (including online/virtual spaces). This in turn was also compounded by a lack of awareness of the spaces that were available:

“There is a diminishing number of LDAN-informed 'third spaces' which would provide social gathering places for our community. Any support of relationships needs to take these deficits into account and counter them by creating more spaces.” (On behalf of a LDAN person, and Family/Friend/Carer)

For children and young people, a lack of community-based day services was mentioned, as well as accounts of young people being actively and/or subtly excluded from more mainstream youth services/clubs/activities, etc. (including as a result of lack of accessibility mechanisms in mainstream provision). More action to support independent social lives of children and young people was perceived to be needed as a priority (especially, but not exclusively, outside of school term times).

Similarly for adults, several respondents mentioned the need to bolster and fund such things as ‘Dates-n-Mates’ and other groups who provide social opportunities, friendship, relationships support and training/resources for people with learning disabilities and neurodivergent people.

Further, the provision of social spaces was also seen as supportive for the families of people with learning disabilities and neurodivergent people, who themselves often face social isolation and exclusion from mainstream activities.

Ensuring that support workers are fully aware of opportunities for socialising and that they facilitate proper access to such services was also seen as key to widening access and maximising reach.

Respondents stressed that access to social opportunities, friendships and relationships were vital to the wellbeing, confidence and overall life experience of both children, young people and adults alike.

Families and Carers

Many comments were also made with regards to supporting families of people with learning disabilities and neurodivergent people since they too hold a central role in ensuring positive relationships can be established and flourish:

“…when thinking about relationships for people with mild LD [learning disabilities] who lack capacity to make an informed decision about most things, please be respectful of the family and their role because we have to get involved in our loved one with LD's [learning disabilities] friendships and relationships and talk them through everything…” (Family/Friend/Carer)

Providing more support to families would, in turn, help them to support their loved ones. This included suggestions that training for parents/carers around relationships would be helpful so they can provide greater and more appropriate support in this respect. Support was also needed, it was felt, to help mitigate the stress experienced by families and their relationships with each other when caring for someone with additional support needs. It was noted that carers often experience loneliness, social isolation, poor mental health and trauma, and would therefore benefit from support and greater opportunities to develop and maintain relationships.

Wider Concerns

A broad range of other comments were made at this section, often raised by just a small number of respondents each, including that:

• Proactive relationship support may be needed instead of only focusing on relationships when they go wrong;
• Consideration should be given to the over-representation of neurodivergent people that perpetrate sexual abuse as well as those who are victim to it;
• More consideration was needed of what trauma informed practice might mean in the context of delivering these proposals (i.e. how to support healthy relationships for people who may have been subject to abuse and trauma);
• The proposals do not cover ‘professional’ relationships for people with learning disabilities and neurodivergent people and their families, and how these can be improved, such as relationships with health, social work, Allied Health Practitioners, medical profession and care support staff;
• Consideration should be given to meeting the needs of people who are also transgender and non-binary; and
• Consideration should be given to the needs of the aging population, and how relationships can be maintained in older age for people with learning disabilities and neurodivergent people.

At several of the proposals in this section, respondents flagged the need for, or importance of, better and more consistent training for advocacy workers, support staff, and public service staff around the importance of relationships (especially romantic relationships), sexual health and parenthood for people with learning disabilities and neurodivergent people. It was suggested that such training should be integral to local plans:

“Training of support staff is vital and people with learning disabilities need to be treated fairly, not infantilised.” (On behalf of a LDAN person, and Family/Friend/Carer)

Reflecting a general emergent theme across the consultation, caution was also raised that, while the proposals were sound in principle, some may have the potential to be risky if not fully researched and consulted on with those with lived experience before implementation.

The development of any new resources for RSHP education or training in this regard should also be co-produced with people with lived experience leading the development of content, it was stressed.

Consistent with views throughout the consultation, the cost of implementing the proposals was also stressed, as well as capacity of services to deliver the proposals:

“All proposals have workforce time and financial implications that would necessitate the allocation of additional funds. Without additionality, disinvestment from existing services would be required. In the current climate resourcing and funding streams are finite with no flex to redirect funds.” (Local Authority)