Growing Older

Here you can see the actions being taken by CB-NSG members and other individuals around growing older with a learning disability and as a family carer.

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What actions are being taken?

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This is a ‘living document’, capturing what is currently being done, and/or actions that are planned – it will be updated as and when progress is made and as more actions are taken. It brings together a range of activities and work being carried out by various individuals and organisations and aims to co-ordinate and amplify the impact. If you think that something you are doing aligns with the themes of the action plan and you’d like to consider including it as one of these actions, please get in touch.


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Growing Older



Identifying what support people who are growing older with a learning disability, and their families, may need 

The need to plan strategically to support people with a learning disability as they grow older was first highlighted over two decades ago, but there is not currently a strong political will or policy to ensure that this occurs. This is a particular issue for people with a learning disability who live with family (and in particular, their parents), or whose family managed a personalised support package on their behalf – this is because, if planning with the person and their family does not occur, then if something were to happen that jeopardises the caring situation (e.g., if their relatives became unable to support them or passed away) it can lead to abrupt transitions which are unlikely to be person-centred and may be unsuitable. 

The CBF has been working on identifying what existing literature, policy, and practice exists, and has worked with family carers of people with a severe learning disability to identify what support would help them and their relatives. 


    • Review of existing literature/policy/practice has been conducted – this identified that there is existing literature/policy/practice on supporting people with a learning disability and their families as they age, but that this does not address the specific needs of people with a severe learning disability and/or behaviours that challenge 
    • Focus groups with family carers of people with a severe learning disability have been held, which identified key issues 
    • Based on the literature review and focus groups, work has begun on developing a practical resource to support family carers of people with a severe learning disability and/or behaviours that challenge to take the first steps in planning for the future 

Next steps: 

    • The resource will be piloted in early 2024, and based on the learning from this, will be refined 
    • Process and learning will be written up and published 



Providing support, including peer support, for family carers to start planning for the future 

As the next steps from the work described above, we will work to refine the resource and intend to run structured sessions providing both practical and peer support for family carers who will be using this. We will seek external funding to make this viable beyond the pilot.


For more information on these actions, including if you are interested in being involved in any of them, please email 


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