Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Section 5: Complex Care - Coming Home

Introduction

This section focused on people with learning disabilities and complex care needs.

The consultation document set out the issues related to delayed discharge from hospital (due to a lack of appropriate community support) and inappropriate out-of-area placement (where people are living away from their home, communities and families even though they did not choose to). It was stated that that was unacceptable, and the Scottish Government indicated its desire to change this.

It was suggested that the LDAN Bill could potentially strengthen some parts of the current Coming Home work to make sure that the vision set out there is achieved. In particular, it was suggested that the legislation could help with two of the key recommendations, including the Dynamic Support Register and the National Support Panel:

• Proposal 1: Dynamic Support Registers - to strengthen the existing Dynamic Support Registers and the processes around them so that it becomes law for the relevant local public body (Integration Authority, Local Authority, Health Board) to hold these. Each area would also be required to report data from it to Public Health Scotland (PHS) for it to be published. Consideration should also be given to: (a) who would be included on the Registers; (b) which public bodies would have statutory duties; and (c) the guidance and safeguards to be put in place to ensure that the Registers are used properly.
• Proposal 2: National Support Panel - this should work with and support the new Dynamic Support Registers and Peer Support Network^[2]. Three options were set out around the scope and remit of this panel:
  • Option A: Legislative Panel Conducting Individual Reviews within Defined Parameters;
  • Option B: Legislative Panel Conducting Peer Reviews of Local Processes; or
  • Option C: Non-legislative Panel Conducting Peer Reviews of Local Processes.

Two closed questions were asked to allow respondents to identify their preferences, and 272 respondents also provided further comments and feedback at this section (the lowest number of respondents to provide qualitative answers of any section in the consultation). Several respondents noted that they either did not understand the proposals enough to comment, or had no experience in this area. A few organisations also noted that this issue was outwith their area and so did not feel qualified to comment.

Proposal 1: Dynamic Support Registers

Respondents were asked to indicate whether there should be a statutory duty upon the relevant public body or bodies (Integration Authority, Health Board, Local Authority) to hold a Dynamic Support Register.

Most respondents (93%, n=224) who answered the closed element of this question felt there should be a statutory duty related to a Dynamic Support Register (DSR). While the results were fairly consistent between individuals, organisations and public bodies in this respect, organisations and public bodies were slightly more likely to disagree with such a duty (at 11% and 13% respectively) compared to individuals and the aggregate level results (see Appendix B). Again, however, only a small number of public bodies answered this question (n=30) so caution is needed over the robustness of these comparisons.

Overall, 160 respondents also provided qualitative comments at the free-text element of this question. However, responses from some individuals often focused on more general support for the DSR itself and what this aims to achieve, rather than identifying or confirming support for this becoming a statutory duty.

Some respondents felt that the data gathered via the DSR was vital in order to identify the number of individuals affected by delayed discharge and out-of-area placements, levels of need, and any issues or patterns which need to be addressed (either locally or nationally). Further, it was felt that analysis of such data would help to support strategy and policy development, support early intervention and longer term planning (e.g. related to housing, care services, staff deployment and training needs, etc.) and to monitor actions and outcomes.

It was also felt that the DSR and associated reporting would provide and maintain visibility of the issue and those who require support. Ensuring that people are not “forgotten about” or allowed to fall through the gaps was seen as key for this intervention.

Support for a Statutory Duty

Across both organisations and individuals that outlined support specifically for introducing a statutory duty related to the DSR, one of the key reasons given was the perception that this would provide greater accountability, both locally and nationally. It was suggested that the reporting requirement would provide oversight and scrutiny, and allow the Scottish Government to identify any issues and intervene when required. A few respondents also suggested that having a statutory duty provided entitlements for individuals as well as a route for redress where service provision falls below what is required.

Some organisations noted that the current implementation of the DSR had been both slow and varied between areas. As such, it was felt that having a statutory duty to hold a DSR would provide greater urgency to develop these across the country, and would provide greater operational clarity and consistency. It was also felt that the legislative footing would ensure the issue was treated as a priority. This would ultimately help to strengthen the use and impact of the DSR. Similarly, individuals tended to want the DSR to be enshrined in legislation due to a level of mistrust and/or a perception that if it is not a legislative requirement then it will either not be implemented at all, that the level of implementation will vary by area, or that it will not be prioritised and kept up to date. It was also felt that establishing this as a statutory duty would help to protect this intervention from any future cost cutting measures.

Some respondents also thought that introducing a statutory duty would help to deliver consistency in the implementation of the DSR across the country, although it was also suggested that national guidance or a national strategy may need to be produced to support this. It was stressed that delivering consistency in this area was necessary and important.

Extend Coverage to Other Groups

Several respondents suggested that the data captured by the DSR should identify the number of autistic people, with a few others suggesting this should also extend to other neurodivergent conditions as well. Others appeared to interpret the proposal and the use of the DSR as already being applicable to autistic people (without any mention of co-occurrences of either learning disabilities or other complex care needs).

A few organisations argued that the DSR should also include children to ensure suitable forward planning takes place. It was stressed this approach was needed due to the lack of inpatient facilities for young people with learning disabilities resulting in them often ending up in unsuitable adult facilities, or in out-of-area placements which risked breaking down. It was noted that authorities should be aware of these individuals while they are children so that longer term planning can happen and to facilitate a more seamless transition into adulthood without the need for lengthy hospital stays or out-of-area placements as local support could be put in place in a more timely manner.

Further, a few respondents suggested that the DSR should capture people in unsuitable or inappropriate settings within their own community, and not just those in out-of-area placements. In addition, it should aim to address delayed transfer between settings, for example being unable to move between hospitals due to a lack of beds, or where people are ‘stuck’ in more high security settings than necessary due to lack of space at lower security facilities.

Caveats, Limitations and Concerns

A few respondents highlighted the need to consider confidentiality, privacy, and data protection issues given the sensitive nature of the data the DSR will contain, as well as the level of data to be published in order to protect anonymity for individuals. It was noted that, within small populations there was a risk that individuals could be identifiable, even using anonymous data.

Some respondents argued that the DSR and data reporting would not be sufficient on its own to deliver meaningful change. It was noted that simply having a register and knowing where people are will not be enough: this information must be gathered and used for the purpose of meaningful change, both for the individual and system improvements. They stressed that more was needed to achieve the aims, including an increase in the supply and availability of suitable housing options, greater social care provisions, and better integration of partner service providers:

“…there are some significant barriers to delivering the commitment made to people stuck in hospital and inappropriate out of area placements, and this Bill feels like a missed opportunity for action to address those barriers. We cannot achieve our aims without the right accommodation - we need to explore how we better integrate housing planning and provision into Health & Social care strategic planning structures, with the aim of developing measures within this Bill to support that integration. We cannot achieve our aims without the right support provision - we need to explore how this Bill could be used to address the crisis in social care recruitment and retention.” (Justice Organisation)

Consistent with the views at most other consultation sections, funding to support these proposals as well as improvements in this area generally were said to be necessary.

Reasons for Disagreeing

Only a few respondents (n=18) disagreed with a statutory duty related to a DSR, consisting of 10 individuals and eight organisations. There was a general split in the reasons given in their qualitative responses, however, with individuals, third sector and Disabled Persons Organisations (DPOs) typically being opposed to the DSR itself, while health services, local authorities and an Other National Public Body/National Agency representing the public sector were generally supportive or neutral towards the DSR, but were opposed to the need to create a legislative duty.

Those who disagreed with the DSR itself felt the necessary information should be held by the NHS on patient records; that a DSR would be bureaucratic and ineffective; or they were concerned about how such a Register would/could be used. Those who argued that a legal duty was not required noted that Health Boards and Integration Authorities were already operating the DSR, with data being provided to the Scottish Government and Public Health Scotland. They felt the current arrangements were effective without the need for a statutory duty. A couple of these respondents also noted that, as the DSR was a recent development it would need to be reviewed and evaluated to identify any implementation issues, possible improvements required and/or alternative options.

Proposal 2: National Support Panel

A closed question asked respondents to identify which of the three options put forward for the development of a National Support Panel had the most benefits.

Of those who answered, over half (59%) preferred Option B, to create a legislative panel to conduct peer reviews of local processes. Option A, a legislative panel to conduct individual reviews within defined parameters was supported by around a third of those who answered the question, while Option C, creating a non-legislative panel to conduct peer reviews of local processes was the least supported option.

Disaggregated data, however, showed differences in the strength of support by respondent groups (see Appendix B). The results for individuals largely mirrored the aggregate level results above. The order of preference for organisations also followed a similar pattern, however, support for Option 2 was lower (at 47%) and higher for Option 3 (at 18%) compared to the total sample. Meanwhile, public sector organisations showed relatively equal levels of support for all three options (at eight or nine respondents each). However, caution is needed when interpreting these results due to the small number of organisational respondents (n=60) and public sector respondents (n=26) who answered this question.

Option A

Statutory powers were seen as desirable or necessary, both to ensure the necessary participation of services, and because statutory powers were required to challenge statutory bodies and statutory decision making, i.e. the Panel needed to have “real teeth”:

“Although we challenge this situation in every way we can… it can be impossible to shift statutory decision making… Without statutory support, it is impossible to overcome the hurdles such as finding appropriate accommodation and setting up a suitable care team and package. There is a need for oversight of these situation in order to make progress.” (Advocacy Service)

This option was also seen as a person-centred approach, focusing on the individuals and lived experience rather than processes. It was seen as the best way to improve situations for individuals and also to develop broader system changes. It was felt that a review of processes (as suggested at Option B and C) would not be robust enough to understand the lived experience of individuals in the system or any delays/failures, and may be open to manipulation and abuse by services.

A few organisations disagreed with the argument put forward in the consultation document that this option may lack the capacity to tackle the volume of cases required. It was noted that the number of cases which would need to be reviewed were not restrictively high, that findings from early reviews would allow wider improvements to be made for others, and that the numbers of individuals finding themselves in situations that would require a case review should shrink over time as the system improves. A few individuals also suggested that some type of triage system could be established to prioritise cases for review.

It was also noted that this option closely followed the approach taken by the Mental Welfare Commission for expert investigations, patient based enquiries and the dissemination of learning and best practice examples.

A handful of respondents who selected Option A as their preferred option also noted that they would accept Option B instead as this also had merit due to its legislative footing. A few suggested that Options A and B should be implemented together as both reviews of individual cases and reviews of systems and processes would be most effective in driving improvements.

Option B

Again, among both organisations and individuals, the most common reason for supporting Option B, a legislative panel to conduct peer reviews of local processes, was its legislative nature. As with Option A, respondents felt that it was important for the panel to have a legislative footing in order to secure participation and to require recommendations to be adopted and changes to be made.

Heath services who agreed with this option also agreed that there was a need for the panel to have legislative powers to ensure changes can be made. It was felt this would deliver accountability. One also stressed the need for this Panel to be seen as a supportive resource which will help to address complex barriers and issues.

A few respondents perceived Option B to be more practical, realistic and achievable than Option A, while some individuals felt Option B would have a wider reach and make improvements for more people compared to Option A.

Other individuals supported the local approach proposed by Option B. It was felt that local voices would be better heard using this approach, and that involving local knowledge and focusing on local situations would help organisations to better tailor solutions for their own populations. A few individuals also perceived that Option B would bring greater consistency to service delivery and processes across the country, and would help to address the variation that currently exists.

Several respondents suggested that, due to the likely timescales that would be required to set up Option B, they would be supportive of Option C (the non-legislative panel conducting peer reviews of local processes) being used as an interim measure - this view was also echoed by a few respondents that did not indicate a preferred option.

Despite supporting Option B, a few respondents were still keen to ensure that individuals benefited directly from the reviews, whether this be systems for redress in individual cases, or some mechanism to ensure that recommended changes impacted individuals and their outcomes.

A few respondents who supported Option B felt that more detail was needed on any likely sanctions or consequences for services who fail to implement the Panel’s recommendations.

Several individuals supported this option as they felt it provided a good middle ground, i.e. it would impact a higher number of people in a shorter timescale than Option A, and although it would take longer to set up than Option C, it would have a legislative footing to ensure cooperation and compliance among services. Again, however, a handful of respondents advocated for a combination of Options A and B as being the best, most comprehensive and effective way forward.

Option C

Option C, to create a non-legislative panel which would conduct peer reviews of local processes, was preferred by the lowest number of respondents. Those who supported this option did so largely because it would be quicker to implement and therefore would have a more immediate impact:

“Not sure the legal aspect is as important as the requirement to do it sooner and have something in place.” (Member of the Public)

Organisations (largely health services, local authorities and an Other National Public Body/National Agency representing the public sector) felt that this option would be more flexible, supportive and collaborative, allowing shared learning and problem solving. It would also allow panels to adapt to local circumstances. Health services also suggested that Option C may be a useful starting point, which could be added to, escalated or tightened up over time if required.

Local authorities and an Other National Public Body/National Agency representing the public sector were also keen not to duplicate the current work or processes already in place, or undermine the role and remit of other organisations (which they felt Options A and B might do), particularly in relation to the Mental Welfare Commission and/or the Care Inspectorate. They noted that there were already a number of governing bodies with oversight in this sector and so felt that a non-legislative peer review panel would provide the additional support required.

Comments from those with No Preference

Several respondents indicated that they did not support any of the options presented. Others either had no preference or could not decide on one single option as they felt all had merit (and/or negative aspects). While some agreed with and stressed the need for any panel to have legislative powers, they either did not have a preference for this to either consider individual cases or local processes, or they did not specify any preference for the structure and remit of the panel.

Other respondents focused on other issues which have been included in the following section.

Other Comments and Considerations

A range of other options or areas for consideration were highlighted and discussed by respondents.

Many respondents offered suggestions around who should have involvement on panels, or who should be invited to contribute views and experiences to the panels, regardless of which option is taken forward. This included:

• People with lived experience;
• Family members and carers;
• DPOs and other third sector support organisations; and
• Expertise from health and social care services and learning disability health services, such as learning disability psychiatry, psychology, nursing and social work.

It was also suggested that peer networks and independent advocacy should be involved and provided to ensure individuals and their families are aware of their rights, are given appropriate support, and in the case of peer networks, it was suggested these can help to identify issues and solutions. Access to advocacy was felt to be particularly important in the event of delays, e.g. delayed discharge from hospital or delays in relocating from out-of-area placements.

As noted above, and throughout the consultation document, several respondents noted that funding and resources would be needed for these proposals to be set up and implemented.

Many also suggested that the issues were a result of system wide problems, and were therefore not solvable by creating a DSR and/or undertaking case or process reviews alone. It was also indicated that in some cases the issues could not be solved by a single organisation or authority. It was noted that there was a systemic lack of alternative accommodation; a lack of communication between professionals/ services and awareness of what each other can provide - it was seen as a disjointed and fragmented system; there was a lack of appropriate accountability; there are issues around staff recruitment and retention, as well as staff lacking the appropriate skills in social care and community based support; a lack of understanding within the system and/or by individual professionals about different needs; and a lack of information with individuals and families unaware of the processes and their rights. It was stressed that significant investment would be required in all of these areas and the development of greater multi-agency working or integration of services for real changes to be felt on the ground.

A few respondents suggested that consideration should be given to implementing a system to allow a right of appeal (or a Tribunal) for those who are ‘stuck’ in in-patient settings, similar to the provisions set out in the Mental Health (Care and Treatment) (Scotland) Act 2003. Others felt there needed to be change to mental health legislation to stop people with learning disabilities being subject to inappropriate mental health restrictions and hospitalisation.

Consistent with comments noted in relation to the DSR, a few respondents again stressed that autistic people and those with other neurodivergent conditions should be considered and included within this section of the consultation document. Similarly, it was suggested that children and young people needed to be included within any system that may be taken forward.

Should a Commission(er) be established as part of the LDAN Bill, it was felt they should have some role or oversight within the DSR and any Support Panel system that is established.

Other Comments

Only a few other issues or areas for further consideration were raised by more than one respondent, including:

• A few respondents supported the approach set out by New Routes Home, however, they did not repeat any of the detail of this within their responses;
• Any model adopted needs to respect (and potentially consider expanding) the roles and responsibilities of the Mental Welfare Commission, the Care Inspectorate and the Mental Health Tribunal to avoid any duplication of effort;
• Systems should meet the requirements of the UNCRPD;
• A National Strategy should set out further details of the plans for this sector;
• National guidance, best practice, a set of outcomes and a framework for support were suggested as necessary or desirable to support organisations to deliver the proposals and ensure a consistent approach; and
• Ban Applied Behaviour Analysis and Positive Behaviour Support and other behaviourist approaches.