Learning Disabilities, Autism and Neurodivergence Bill: consultation

Closes 21 Apr 2024

Data

Better data collection and reporting will enable better understanding of the requirements of people with learning disabilities and neurodivergent people throughout their life and build evidence on whether they are able to realise their rights.

It is important that the population of neurodivergent people and people with learning disabilities are visible in topic specific data collections where these are of particular interest, for example, employment data.

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

In order to achieve the desired outcomes, organisations often need to link different pieces of data to paint a full picture. However, a barrier to being able to do this is that there needs to be a legal basis for some types of data to be collected, including personal data. The Bill could provide an opportunity for data to be collected in particular circumstances if that would be beneficial to neurodivergent people and people with learning disabilities.

Proposal 1: Developing a commission(er) with responsibility for data collation.  Within the section entitled “Accountability”, there is discussion on the possible creation of a new Commission or Commissioner, or adding to the remit and powers of an existing body. If a Commission or Commissioner (or other relevant accountability model) is created, their functions could include responsibilities for collecting and analysing data on neurodivergent people, and people with learning disabilities.

Additionally a body could have powers to make recommendations to other organisations collecting data to disaggregate their data to the level of neurodivergent people, and people with learning disabilities.

There are some other options that would need to be developed further, however, to help us with this, we would like to know your views on the following:

Proposal 2: Placing duties on some relevant public bodies to collect data on neurodivergent people and people with learning disabilities where this would be helpful for better understanding of the needs of these groups, 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 better understanding of the needs of these groups, 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 Learning Disability Mortality Review (LeDeR) programme. This helps reduce inequalities in care for people with a learning disability. It could reduce the number of people dying sooner than they should.

Please tell us what you think.

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.

Which of these proposals do you agree with (if any), please tell us why?
Which of these proposals do you not agree with (if any), please tell us why?
Is there anything else that we should consider in relation to data?