As part of our programme of work looking at support and opportunities for adults with learning disabilities, we recently published a report in which we assessed the value of unpaid care delivered to adults with learning disabilities by a sample of unpaid carers.
We found that, on average, the support delivered by each unpaid carer in our sample would have cost the taxpayer £114,000 per year to deliver equivalent care. The unpaid carers who lived with the person they support provided between 8 and 16 hours of care per day. Caring commitments restrict unpaid carers’ ability to work and more than half of the unpaid carers in our sample were living below or close to the poverty line.
Our findings highlight the extraordinary contribution that unpaid carers make, often unrecognised, and the impact the providing unpaid care has on family finances and wellbeing.
None of the unpaid carers in our sample have seen the support they receive from the care system return to pre-pandemic levels, even as Scotland moves “beyond level 0”. With no clear plan for a return to normality, unpaid carers are facing an uncertain future.
We presented our research at a recent webinar. We were delighted to be joined by Jenny Miller and Pat Graham from PAMIS (Promoting a More Inclusive Society), which is a Scottish charity that promotes better lives for people with profound and multiple learning disabilities and their families.
You can watch a recording of the webinar here.
Following presentations, we invited attendees to share their experiences and ideas across three themes:
- What works well now?
- What could policy makers do to make a difference?
- What can we all do?
Below, we present a summary of what we heard during conversations that were impassioned and informed by those with lived experience of the issues discussed.
What works well now?
It was clear from the discussion that there are pockets of success and that some aspects of policy do deliver good support for family carers. However, it was noted that inconsistencies between the support available in different areas of the country are apparent, and delivering a more consistent offer was a priority amongst many attendees at the webinar.
One contributor noted that one such pocket of success that has been achieved in some areas is when unpaid carers work in partnership with care providers and health and social care staff, as valued equal partners in planning and delivering care. This includes paid contributions and/or support for their role as a carer, which enables them to play a key role in providing high quality care.
What could policy makers do to make a difference?
In the short term, it was suggested that the immediate priority must be for resources to be directed towards rehabilitation as we emerge from the Covid-19 pandemic. Some contributors noted that the pandemic has harmed the physical and mental health of many people with learning disabilities, and that providing more support in the near term should be a priority for policy makers.
In the medium to long term, there was discussion by attendees around the idea of offering recognition to unpaid carers for the skills that they have developed through their caring roles. This could be extended to create pathways back into employment and building on those skills with formal training and accreditation.
Some attendees asked for support plans to be put in place as standard for all adults that engage with learning disability services in case the primary unpaid carer becomes ill. This reflected the anxiety that many unpaid carers face about what will happen to their loved one if they can’t support them.
Following on from this, and the presentation by PAMIS, there was a request for clear care guidelines to be established in hospital settings, so that paid carers can continue to support a person with a learning disability when they are admitted to hospital. It can be distressing for someone with a learning disability to be in hospital without someone they know, and that often falls on family members.
A final request to policy makers was on the importance of the voices of unpaid carers to be heard in consultations around the creation of a new National Care Service in Scotland. This consultation has recently been kicked off and unpaid carers will be interested in how the National Care Service will support them and their families. It was noted that unpaid carers have a lot to offer the consultation, as they tend to have a good understanding of how the care system fits together from the user’s perspective.
What can we all do?
Finally, we asked attendees about what we can all do to improve their situation. On this point, there appeared to be a consensus that unpaid carers of people with learning disabilities should demand more and better support from the care system, as many are struggling to cope. At a minimum, it was said, there is a need for support to return to pre-pandemic levels.
This points to a feeling that the contribution made by unpaid carers is vastly under-recognised and not well understood by decision makers in authorities, be that national or local authorities.