What will happen when I'm gone?
When you are a carer of someone with a severe learning disability, there can be extra worries about what will happen after your death. In this page we answer three popular questions.
What actions need to be taken?
1. Put in place a strategic plan to identify and support people with a learning disability as they and their families grow older
The need to plan strategically to support people with a learning disability as they grow older was first highlighted over two decades ago, including in Valuing People and Mencap’s Housing Timebomb report, but there are no current specific policy requirements to ensure that this occurs.
Recent research shows that 37% of adults with a learning disability and autistic people live with family and friends; a statistic that is largely unchanged over the last decade. Beyond this, the much-welcome increase in average life expectancy for people with a learning disability means that people with a learning disability who live with and/or are supported by family members will do so for longer. This has in turn led to cases where families continue to support their relative into their old age, which can result in physical and mental health issues for the family carers and in the person with a learning disability not being able to get the right support.
People with a learning disability also face particular health issues relating to ageing. For instance, people with a learning disability (and particularly people with Down Syndrome) are significantly more likely to a) develop Alzheimer’s/dementia than the general population, and b) to develop these at a younger age.
Without strategic planning to a) identify, and b) work with people with a learning disability and their families to plan for the future, housing and support for people with a learning disability could be jeopardised. By identifying people with a learning disability and their families early on, and working with them to put in place plans for the future that suit everyone, quality of life can be improved and crises caused by abrupt and unplanned changes can be avoided.
Local authorities should:
Ensure that they are aware of the number of people with a learning disability within their area
Introduce a mechanism for recording and monitoring the ages of people with a learning disability within their area and their families
Identify any people with a learning disability within their area who is a) living with, and/or b) supported by family members
Have a policy for contacting people with a learning disability and their families to create plans for the future, e.g., if a family carer is no longer able to provide support, if health and/or support needs change, if there is ill-health or bereavement, if mobility needs mean that the family home needs to change
Ensure that this policy includes reviewing and updating these plans at regular intervals
Ensure that people with a learning disability who live with ageing family carers are highlighted within local housing strategies
Integrated Care Boards need to:
Work with local authorities within their area to support them with planning for the future, and provide monitoring and oversight to ensure this occurs
The Department of Health and Social Care needs to:
Collect and monitor data on the number of people with a learning disability living with and/or supported by family carers
Collect and monitor local authority data on the percentage of people with a learning disability and their families who have received support to plan for the future
Analyse and publish national level data
Collect and distribute good practice examples to a) local authorities, and b) ICBs
For further information, including policy, practice, and research recommendations, please see:
We have worked to co-produce these actions and asks, building on years of work that has gone before it. We are happy to engage with policy makers at a local, regional, and national level about how we can get things right for people with a learning disability whose behaviour challenges. If you would like to talk about any of the actions in this plan, or any work you are planning on doing, please email actionplan@thecbf.org.uk
