Learning Disabilities, Autism and Neurodivergence Bill: consultation

Closes 21 Apr 2024

Complex Care – Coming Home

We know that some people with learning disabilities who have more complex care needs spend a longer time in hospital than is medically necessary often due to a lack of appropriate community support. This is called delayed discharge. We also know that some people are living away from their home communities and families even though they did not choose to. This is often called living in an inappropriate out-of-area placement. 

The Scottish Government knows that this is completely unacceptable and we want to change it. We have been working to improve this for people with learning disabilities and complex care needs and this is often called the Coming Home programme.

What can the Learning Disabilities, Autism and Neurodivergence (LDAN) Bill do?

Proposal 1

Dynamic Support Registers are our new way of ensuring we know how many people are in a delayed discharge or inappropriate out of area placement and involve collecting and publishing this data. We want to strengthen the Dynamic Support Registers and the processes around them through the LDAN Bill so that it becomes law for the relevant local public body (Integration Authority, Local Authority, Health Board) to hold these. This would help to ensure that there is visibility for people with learning disabilities and complex care needs on a national level, and that a consistent approach is taken.  

Each area would be required to have a Dynamic Support Register, and to report data from it to Public Health Scotland (PHS) for it to be published. It is important to note that personal information about people on Dynamic Support Registers is not published, and none of the data that is published nationally identifies the individuals that it is about. 

If we do not make this a law, then Integration Authorities could decide to monitor people in a different way.  It could also be more difficult to ensure that sufficient planning and early intervention is being put in place.  

Proposal 2

The National Support Panel  (“the Panel”) should work with and support the new Dynamic Support Registers and Peer Support Network and we think there are different ways to do this.  We want to consider different options, including whether we should make the Panel statutory in the LDAN Bill.   

The Coming Home Implementation Report recommended a National Support Panel that could understand and hear from families and individuals about their individual circumstances.  One way to do that is to establish a panel that would look at every individual case.   

Although we have thought about this, we do not think it would work in practice due to the length of time it would take a panel to consider every case.  We would need several panels to make this work and we would need to use our small pool of experts in Scotland to do this. We think this would make the situation worse for people who need quick solutions. 

We have set out below the options we think could work under proposal 2. 

Option A: Legislative Panel Conducting Individual Reviews within Defined Parameters

This type of Panel would be made up of sector experts and people with legal and clinical knowledge. 

This type of Panel would have a function allowing it to conduct investigations into individual cases on a discretionary basis. The Panel could have a list of potential circumstances that may give rise to a review or investigation and where the Panel members might decide that an investigation would provide a good example of what could be done to address complex barriers or issues.  

This would mean that not everyone would get an individual review. However, Integration Authorities, Local Authorities and Health Boards would be able to use the findings and learnings from the Panel’s example individual case reviews to improve their practices.  

The Panel would be reviewing fewer cases and therefore the demand on the Panel and its members would be reduced to a manageable level.

Option B: Legislative Panel Conducting Peer Reviews of Local Processes

Another option for a legislative Panel would be one that conducts Peer Reviews of Local Processes.  

This Panel would consist of a group of experts who could provide checks and balances through a model of peer reviews. It would be made up of a ‘bank’ of expert members, including people with lived experience, who could be brought in to conduct peer reviews of the work and processes of Health Boards, Local Authorities and Integration Authorities in relation to this population.  

This process would involve the Panel going to a local area and reviewing the relevant public bodies’ systems and processes in relation to complex care needs, to identify key challenges and issues. The Panel would then provide recommendations or decisions based on the peer review that the Health Board, Local Authority and Integration Authority would have to implement. The Panel would provide follow up support and would monitor progress.  

The Panel might review systems and processes that could be of benefit to everyone – things like: 

  • Commissioning appropriate accommodation and services 
  • Securing and financing support packages 
  • Identifying suitable support providers. 

This panel would be legislative, so the relevant public bodies (Health Board, Local Authority, Integration Authority) could be required by law to participate and could also be required by law to implement the recommendations made by the Panel.  

Although this type of Panel would not be able to review individual cases as part of their role, their reviews would have a significant impact on those individual people and their outcomes.  

Option C: Non-legislative Panel Conducting Peer Reviews of Local Processes

A non-legislative National Support Panel Conducting Peer Reviews of Local Processes would work in the same way as the Panel described in Option B, however it would not be legislative.  

Because this Panel would be non-legislative, it could be set up more quickly than a legislative one. However, it would not be the law for Health Boards, Local Authorities or Integration Authorities to participate in peer reviews. The peer reviews would be voluntary, with the option of local areas being able to request a review.  

Related information

Consultation Questions

The questions in this document refer to information contained in our consultation document and various alternative formats which can all be found here

You need only answer questions in the sections most relevant to you.

Should there be a statutory duty upon the relevant public body or bodies (Integration Authority, Health Board, Local Authority) to hold a Dynamic Support Register? (Proposal 1)
Which of the options for the National Support Panel (Proposal 2) do you think has the most benefits?
Are there any other options that you think we should consider?