Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Section 4: Data

Introduction

The consultation paper set out the importance of high quality and accurate data related to people with learning disabilities and neurodivergent people across Scotland. It also noted the current barriers to achieving this. Feedback was sought in relation to four proposals which were aimed at providing a legal framework to support joined up data collation and sharing. The four proposals were:

• Proposal 1: Developing a commission(er) with responsibility for data collation - any accountability model adopted (discussed more at Part 4) could include functions and responsibilities for collecting and analysing data on people with learning disabilities and neurodivergent people, and to make recommendations to other organisations collecting data to disaggregate this to the level of people with learning disabilities and neurodivergent people.
• Proposal 2: Placing duties on some relevant public bodies to collect data on people with learning disabilities and neurodivergent people where this would be helpful for better understanding of the needs of these groups and their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.
• Proposal 3: Placing duties on some relevant public bodies to provide returns to the Scottish Government regarding local data on people with learning disabilities and neurodivergent people, where this would be helpful for a better understanding of the needs of these groups and their experiences, informing service design and improvement, and to allow for evaluation of measures to improve outcomes for these groups.
• Proposal 4: Consideration of the development of a Scottish version of the LeDeR programme - Similar to Child Death Reviews, a programme could be established to ensure when someone with a learning disability dies, that a review happens to identify why they died and share the learning on how it could have been prevented.

Main Findings

Overall, 492 respondents provided feedback at this section. Responses were more mixed compared to earlier sections, with feedback often considering data collection, analysis and use more generally rather than always focusing on the proposals set out. Some (often organisations) discussed the types of data they felt were important to collect, or set out their own proposals or models for how they thought data collection and analysis should be undertaken. In particular, public sector organisations discussed what might be possible within existing structures or might be useful to improve service delivery, while third sector organisations outlined the type of data that would be important or desirable to collect generally. Other respondents noted pros and cons of each proposal without indicating whether they supported them or not.

Nevertheless, there was widespread support (among both individuals and organisations) for the collation and use of data generally, regardless of the mechanisms developed to achieve this. It was felt that access to robust and high quality data was essential to identify unmet need and the scale of any issues, for service and resource planning, to identify areas for improvement, to monitor and assess outcomes, etc. Data were also considered important at the national and local level, to assess the national picture and for benchmarking, while also developing local services:

“Gathering data helps authorities to see who they are providing for and where they need to target further resources. I think this is a very important method to help them allocate funding and training, and further helps them to identify what is needed now or may be needed in the future.” (Family/Friend/Carer)

While not asked about at this question, some respondents also identified sectors where they wanted to see better data in relation to people with learning disabilities and neurodivergent people. This included local authorities, health boards, health and social care, mental health, education, employment, justice, and housing, with some respondents also calling for better data in relation to waiting times for diagnosis/assessment.

Around a quarter of those who responded at this section agreed with all the proposals (lower than the levels of respondents agreeing with all proposals at most other sections). Where respondents agreed with all proposal this was either because each option had merit or because they thought all proposals should be implemented in combination. It was felt this would provide a joined up and consistent approach, which would include accountability and oversight. Similar proportions of respondents (roughly half of those who responded at this section) supported each of the proposals.

Proposal 1: Commission(er) Responsible for Data Collation

Proposal 1, developing a Commission(er) with responsibility for data collation, was largely supported. Respondents were supportive of having one central organisation/ department/person responsible for co-ordinating and overseeing all data related issues. It was felt the Commission(er) could provide guidance and support to other public bodies in their data collection efforts to ensure consistency across services/ the country. In addition, a Commission(er) could/should monitor and quality check returns or reporting, collate the data at a national level, and ensure meaningful improvements are made as a result of the data:

“Establishing a Commissioner (or Commission) is the only way to guarantee visibility of learning disabled and neurodivergent people in data collection and ensuring the analysis of that data is used for serving that population rather than for justifying reasons to limit resources and services.” (Neurodivergent Individual and Family/ Friend/Carer)

It was also felt that having a named role/designated organisation responsible for this would help ensure accountability - both that the Commission(er) would be accountable, but that the Commission(er) would also hold public authorities to account for data collection, data use, and how it informs service improvements.

However, Proposal 1 also elicited the greatest level of disagreement out of all the proposals presented in this section. Some of these respondents disagreed with the creation of a new Commission(er) because setting up and running a new Commission(er) would be costly, and they felt that resources would be better spent on improving data collection/use and service provision. Several were also concerned that this would build in delays, as time would be needed to set up such a body and establish mechanisms for data collection, while change was felt to be needed more urgently.

Others (including both those who agreed and disagreed with this proposal) felt that setting up a new Commission(er) would not be necessary as existing public bodies could undertake data collection and analysis (or perform a co-ordination and quality control role), and/or would be best placed to do so. A range of examples were provided, with Public Health Scotland (PHS) mentioned by a few organisations. Others felt that the Scottish Government should have responsibility for this rather than a Commission(er). There were also concerns over the resources that would be required to establish a new Commission(er).

Several respondents who were not opposed to the use of a Commission(er) in general felt that they should not be responsible for collecting data themselves. Instead, they should collate returns from public bodies and ensure compliance and quality.

Proposals 2 and 3: Duty to Collect Data and Provide Returns

Of those who discussed Proposals 2 and 3, most considered these jointly. Those who supported these proposals felt they should be implemented together, while those who disagreed with each did so largely for the same reasons.

Those who agreed with Proposals 2 and 3 felt there was a need for local data, information about services being used, experiences of these services, etc. It was felt that imposing a duty for data collection and returns would support public bodies to prioritise this to provide higher quality and more meaningful data. It was also felt that public bodies and local services would be best placed to gather data and provide returns relevant to their services/sector:

“…public authorities will collect information on different areas relevant to their sector. Requiring public authorities to collect this data and to demonstrate how this data informs policy and practice development will ensure the needs of neurodivergent people have been properly considered.” (Neurodivergent Individual)

In addition, respondents argued that data gathered at this level would support organisations to develop local services which were best tailored to meet local needs, while making returns to the Scottish Government (or a Commission(er)) would allow national datasets to be collated and a national position to be established.

Several respondents also felt that imposing a duty on organisations would ensure data was being gathered, which would address the current lack of data and evidence gaps experienced in certain areas and for particular populations.

It was also felt that Proposals 2 and 3 were “achievable” as many organisations already collect data, and this would not require the establishment of a new Commission(er) or alternative system.

Several respondents suggested that Proposal 2 (or any data system generally) could be enhanced by creating arrangements to allow for data sharing between organisations to ensure vital information is available to all those involved in the delivery of relevant services. This would ensure individuals and their families/carers do not have to repeat information at each contact.

A few respondents also felt that Proposal 3 needed to place a timescale on returns, with most of those who discussed this suggesting returns should be provided and published annually. It was also felt that a duty needed to be imposed on the Scottish Government to ensure annual publication of data/results.

As with previous sections of the consultation, some respondents disagreed with Proposal 2 and 3 due to the wording of the proposal rather than the intention. It was argued that all public bodies should be required to collect data and provide returns, not just “some”. Several respondents (typically family/friends and third sector support organisations) also felt that the wording “where this would be helpful” should be removed from the proposals as this could be used as a loophole by public bodies to avoid undertaking these tasks.

Those who disagreed with Proposals 2 and 3 tended to feel that local authorities and local public bodies were already overstretched and would therefore be unable to take on any further responsibilities. It was also felt that the content, nature and quality of data collected and the returns provided would be highly variable.

Disagreement with Proposal 3 specifically was often driven by whether the respondent thought a Commission(er) should be introduced or not, rather than being opposed to a duty to provide returns. Where a Commission(er) was preferred then having public bodies reporting to the Scottish Government was seen as unnecessary - rather, public bodies should be providing data returns to the Commission(er). Should a Commission(er) not be appointed, however, then providing returns to the Scottish Government was desirable.

Views on whether data should be shared with the Scottish Government were also mixed. Most felt that anonymous data should be shared with the Scottish Government because it should have overall responsibility for this and/or to support national policy making decisions, resource planning and budget allocations. Others, however, felt that the Scottish Government did not need access to this level of data, particularly at the local level, and especially if individuals were to be identifiable. These respondents argued that a Commission(er), if appointed, should have responsibility for the data, otherwise, such data should be retained locally.

Proposal 4: Review the Deaths of People with Learning Disabilities

Overall, respondents were in favour of Proposal 4, i.e. to consider the development of a Scottish version of the Learning from Deaths Review (LeDeR) programme in a similar system to Child Death Reviews. Most of those who supported this felt it was important to review experiences and outcomes in order to learn lessons which could improve outcomes going forward and address the early mortality rates for people with learning disabilities. It was also felt that such a system would mean service providers would be more accountable for their decisions and actions.

Some respondents argued, however, that these reviews should be widened to include autistic people, particularly due to the high rates of suicides and barriers to healthcare. Some also called for the inclusion of neurodivergence more generally, and the inclusion of those with PMLD (both here and in Child Death Reviews). Indeed this was also a key reason for disagreement with the proposal, i.e. respondents felt the stated scope for inclusion in such reviews was too narrow and needed to be widened, rather than these respondents having any real opposition to the use of reviews.

Several respondents were also keen to ensure that more could be done to tackle issues while people were still alive rather than only reviewing situations after death. It was suggested that monitoring quality of life was needed, and/or that the Annual Health Checks could provide a useful forum to inform this:

“We would suggest that LeDEr is not limited to assessing a person’s life upon their death, but also during regular intervals during their life. This would help to ensure the person is able to provide their own feedback about their life and is an opportunity to highlight issues of concern.” (Organisation for Other Disability/Condition)

However, a few organisations who were supportive of this proposal stressed the need to ensure any learning from these reviews truly resulted in changes and improvements. They noted that the LeDeR system in English had not necessarily resulted in any meaningful improvements in life expectancy or outcomes.

Caveats, Concerns and Reasons for Disagreeing

While only a very small number of people explicitly stated they disagreed with all proposals the reasons provided were consistent with common concerns raised throughout responses generally. The key issues tended to be related to the perception that data collection was not necessary to developing improvements, and a nervousness or suspicion around how the data could be used.

Data Not Required to Progress Improvements

Many respondents who disagreed with all proposals, and several who supported them in principle, noted that a lot was already known about the experiences of people with learning disabilities and autistic people. Therefore, extensive data collection may not be required in order to implement improvements. It was suggested that data collection was not a priority area that needed to be focused on at this stage, but that action and real change was needed.

Inappropriate Use/Used for Negative Purposes

Another major concern for respondents was how data might be used and any negative uses/consequences of developing datasets based on people with learning disabilities and neurodivergent people, i.e. vulnerable groups. Some were deeply concerned about the risks that any such datasets might pose. For example, respondents were worried about data breaches and data being shared inappropriately or sold to third-parties, as well as what any future (typically described as “extreme right wing”) governments might use the data for. They were concerned such data could be used as a list or register to identify vulnerable people for a host of negative purposes:

“Many of us oppose data collection on us, as the risks outweigh the benefits. Progress has been two steps forward, two steps back. Our legal standing is often compromised with a note of autism or of similar "vulnerability" where we can lose our autonomy in anywhere from custody, divorce or sectioning to name a few.” (Individual with a learning disability)

Several respondents suggested that the use of anonymised or aggregated data may provide a suitable safeguard against these concerns. Others suggested that robust protections were required to ensure data could not be shared inappropriately or sold to third-parties.

Other Comments and Considerations

Disaggregate Data Levels

Many respondents stressed the importance of disaggregated data, and suggested that any data gathering needed to include condition specific data (where known) and co-occurrence of conditions. It was felt highly important that data do not simply attribute everyone under a general LDAN or neurodivergence heading. Some respondents stressed the need to gather data on those with Down’s Syndrome in particular (with PMLD also noted less often), to ensure experiences are not lost within a wider population. A few organisations also noted that disaggregated data was a requirement of the UNCRPD.

Respondents with, or those supporting/representing those with Down’s Syndrome highlighted the comprehensive level of data that was currently collected around Down’s Syndrome in pregnancy compared to the lack of data available about them in the population. They stressed that data should continue to be equally important after people with Down’s Syndrome are born and throughout their lives.

Similarly, respondents called for intersectional data, with a wide range of specific suggestions mentioned. These included: information on other conditions, disabilities or health issues; mental health information; protected characteristics (with several noting the need to identify ethnicity, gender, age or life stage, and LGBTQI+ specifically); socio-economic information and the Scottish Index of Multiple Deprivation (SIMD); unpaid carers; care experienced people; survivors of trauma and/or abuse; victims of crime; and members of the armed forces community.

Data Use

Some respondents also stressed that any data collection needed to be meaningful and used to make real improvements to the lives of people with learning disabilities and neurodivergent people, the data should not become the end result. It was suggested by several organisations (particularly, but not exclusively, in the public sector and representative organisations) however, that greater analytical resources would be required in order to deliver this.

Practical Issues

Issues with data integrity/validity and representativeness were also discussed. Respondents queried how undiagnosed persons and those who do not know they have a condition would be included/counted in the data, or indicated that systems would be needed to take account of this. It was also highlighted that not all relevant individuals are actively engaged with public bodies and some find it difficult to access services, therefore experiences would be missed if only gathering data via services. Conversely, respondents queried how double counting of individuals would be avoided where they are involved with different services and agencies. Further, respondents queried how consistency would/could be ensured between data collectors, with some suggesting that clarity and consistency would be needed around definitions, along with consistency in the language used and interpretation/ coding of data (although others noted this risked adopting a medical model of disability rather than a social model as was preferred at Part 1 of the consultation).

Respondents were also concerned about how informed consent could be ensured, but stressed that this was essential, both for the collection and sharing of data.

Other practical aspects of data collection, analysis and reporting were also flagged as areas for further consideration. These included:

• The need for clarity and transparency about how data will be stored and used, and around any data retention periods;
• Data security, privacy and GDPR compliance would need to be strictly adhered to, although it was noted that GDPR can limit data sharing between agencies; and
• There is a need for joined up systems and data sharing in a secure and data protection compliant way.

Other Issues for Consideration

A range of other issues were also raised by respondents as being areas that required further consideration, as follows:

• Qualitative data is needed, not just quantitative data;
• Involve those with lived experience in determining the scope of data to be collected and in designing any relevant data collection tools;
• A joined up approach, partnership working and collaborative practices are needed to avoid silo working;
• Data could be collected via the Scottish Census, the Scottish Crime and Justice Survey, Scottish Health Survey, and Scottish Household Survey;
• Equivalent data is also required for children and young people with learning disabilities and neurodivergent children and young people;
• The proposals lack reference to autism, and only focus on learning disabilities and neurodivergence. It was suggested that autism needed to be included and named specifically throughout (both here and at other sections of the consultation);
• The third sector also provides services to people with learning disabilities and neurodivergent people, with many either already collecting data or well placed to do so. This sector should be incorporated within any plans;
• A few organisations queried how data from the Annual Health Check would be incorporated within any new system, and felt that greater consideration was needed around how these data are collected and used;
• A few organisations called for the Scottish Learning Disability Observatory to be involved in the analysis of any data given their expertise in the area; and
• A few organisations called for data collection related to the Learning Disability Statistics Scotland (LDSS) to be restarted - although it was stressed that investment was required to ensure data were good quality and fit for purpose, and that statistics for children and young people should be included.

Some organisations set out findings from existing data/research, and/or outlined the scope of data that was already being collected. A few suggested that such sources may provide a useful starting point or could be expanded or rolled out to other sectors. Others (including individuals and organisations, and particularly public bodies) sought clarity or greater levels of information about how data collection would work; how frequently it would be required; what type of data would be collected; whether this would sit alongside or require expansion of currently collected data or represent entirely new requirements; how the data would be used and managed; and how the work would be resourced and funded. In particular, public bodies (amongst others) were keen to stress the additional workload, training and system updates/IT infrastructure that would be required to collect, quality assure, and analyse data and prepare any returns, and were keen to ensure that this would be fully funded and resourced. They were also keen to avoid duplication of effort in relation to data collation, analysis and reporting. Some public bodies were, however, positive about the potential of a formal framework in this regard to provide consistency, to support organisations to formalise developing approaches, and to allow a national picture to be established and appropriate policies to be developed.

Finally, several individuals indicated that they did not understand the proposals set out in this section of the consultation document and so could not comment.