• The Advocacy People

‘The Final Transition: what happens when a carer can no longer care?’

Updated: Aug 20, 2021

An estimated 29,000 people in England with severe and profound learning disabilities live with parents aged 70 or over. Every year, people with a learning disability have their lives thrown into crisis when they and their parents are no longer able to cope. Older parents live with the constant fear of where their son or daughter will live when they are unable to care for them or after they die. (The housing timebomb: the housing crisis facing people with a learning disability and their older parents: Mencap 2002)”.

Not knowing where a cared for person will go, or who will look after them when a carer can no longer do it, can be a constant cause of anxiety for carers. In her blog, Learning Disability Projects Lead (Berkshire), Alex Osterritter, explores how this uncertainty among carers prompted a key report addressing this issue.

“As someone who advocates on behalf of all adults with learning disabilities, I am driven by the need to ensure that those who deliver services hear the voices of all adults with learning disabilities.

A number of carers told me that their biggest worry is not knowing what happens to their cared-for if they are no longer able to care for them themselves. This was a constant cause of anxiety among the caring community and, in 2016, I decided to take this to the West Berkshire Learning Disability Partnership Board (WBLDPB) so that we could investigate further. As co-ordinator of WBLDPB, I arranged for the group to speak to many carers as well as adults with learning disabilities to get a better idea of how we could address those concerns. Over time we listened to the community, taking on board all of their concerns. This culminated in a report called ‘The Final Transition – what happens when a carer can no longer care?’ which was published in 2017 in partnership with Healthwatch West Berkshire and West Berkshire Mencap.

The report is an opening discussion document with a view to improving outcomes for families with caring responsibilities for adult children with learning disabilities. A number of recommendations were accepted by West Berkshire Local Authority Adult Social Care. Crucially they agreed that Annual Reviews would now include an additional question asking adults with learning disabilities and their parent/family carers where they would like to live and who they would like to live with if their parents were unable to look after them. This question is asked sensitively but it is necessary to give peace of mind to ageing parent/family carers as well as an indication of what the adult with a learning disability would like and what they would not like.

As an advocate I support people with learning disabilities to manage their own expectations so they are aware why they may not be able to continue to live in the family home. Communication is key here and I love being able to support this communication.”

Alex Osterritter

West Berks LDPB Co-ordinator and LD Projects Lead Berkshire


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