Learning Disabilities, Autism and Neurodivergence Bill: consultation

Closes 21 Apr 2024

Health and Wellbeing

Neurodivergent people and people with learning disabilities experience poorer health outcomes than the general population, which can be preventable, resulting in below average life expectancies and death caused by preventable conditions. 

It is important that people with learning disabilities and neurodivergent people have good health outcomes in order to access their rights and be able to participate fully in life. Poor health creates an additional barrier for neurodivergent people and people with learning disabilities, potentially limiting or impacting their ability to be active in their communities, access employment or maintain relationships. 

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

The Bill can help to create the right conditions for people with learning disabilities and neurodivergent people to access supports and services successfully when they need them, helping to prevent illness and improving overall health and wellbeing.  

Proposal 1: Neurodivergent and Learning Disabilities Strategies

We are proposing legislative requirements for national and local strategies in future and we could set out what the strategies must include. For example, in relation to health care, we could ask Health Boards, Integration Authorities and Local Authorities to set out in their local strategies how their workforce planning and service planning has taken into account the needs of the neurodivergent and learning disability populations.  

Proposal 2: Mandatory training for the health and social care workforce 

We have set out proposals around mandatory training. In England, the UK Government has introduced a new legal requirement for all health and social care services registered with the Care Quality Commission (CQC) to provide employees with training appropriate to their role on learning disabilities and autism. In England, this is called the Oliver McGowan Training. 

We propose to legislate for a similar training requirement for health and social care in Scotland in the LDAN Bill. However, we could take a wider approach so that the mandatory training focusses on learning disabilities and neurodivergence - not just learning disabilities and autism.  

Proposal 3: Inclusive communications and Accessibility

We have set out proposals on inclusive communications and this will impact on healthcare.  We propose to legislate for neurodivergent people and people with learning disabilities to be able to request access to alternative means of communication where the offered means of communication is not suitable work for them.  We also propose better access to easy-read versions of public facing communications and documents. This could include a broad duty to make them available on request as well as an automatic duty to provide them in certain circumstances, such as a duty on National Health Service (NHS) Boards and Health and Social Care Partnerships (HSCPs) to require appointment letters to automatically be produced in easy read.  

In addition, we also propose legislating for an Accessible Information Standard for Scotland which would be applicable to NHS Scotland organisations.

We also plan to do more work to look at how far existing complaints systems meet the needs of neurodivergent people and people with learning disabilities. 

Proposal 4: Patient Passports

We could place a duty on Health Boards, HSCPs and Local Authorities to ensure that a person’s “passport” is able to follow them through whichever care pathways they are accessing, such as a hospital or care home admission, and that these passports include important information about their needs and preferences, including how to communicate with them in an accessible way. This could be similar to Advance Statements that can be used by people with mental health conditions, or it could be based on Promoting a More Inclusive Society (PAMIS)’s Digital Passports.

Passports like these help medical professionals to know how best to support people, their preferred treatments or communication styles, and can reduce barriers and frustration when people have to repeatedly restate their needs. There is currently no statutory duty placed on patient passports and, although they are encouraged as best practice, implementation is inconsistent.  

Proposal 5: Annual Health Checks  

We are currently rolling out annual health checks for people with learning disabilities across Scotland. A health check will be offered to everyone who is eligible by end March 2024, backed by £2m of funding per year. Given the really good evidence of significantly poorer health outcomes of people with learning disabilities, annual health checks will make a big difference. We propose to include the delivery of annual health checks as a specific legal duty in the Bill.   

Autistic people, people with Fetal Alcohol Spectrum Disorder (FASD) and Attention Deficit Hyperactive Disorder (ADHD) also have poorer physical health outcomes and/ or a lower life expectancy than the general population. There are many possible reasons for this gap, including poor professional understanding among health and care staff, which can result in these groups people having signs of illness or their needs overlooked. Without the right understanding, these groups can miss out on adjustments needed for them to engage in medical appointments which can lead to distressing experiences and avoiding seeking advice. We could include a duty in the Bill which, in effect, extends the current annual health checks for people with learning disabilities to autistic people. We could also consider extending this to people with FASD and ADHD. We would want to first gather more evidence of the need for this.

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 health and wellbeing?