Professor Rachel Forrester-Jones is Director of the Centre for the Analysis of Social Policy (CASP) at the University of Bath.
Local authorities (LAs) in England are stating that coronavirus has ravaged finances and are asking for a government bailout; the pandemic merely highlighting the result of consistent underfunding due to a decade of austerity measures. With LAs already struggling to meet their legal duties to provide social care to vulnerable adults before the pandemic, and PM Boris Johnson admitting that the solution to the social care crisis is still five years away it is unsurprising that LAs have increasingly become reliant on informal care. Even before COVID-19, 7.6 million family carers in the UK were recorded to be providing around 149 million hours of care per week – equal to 4 million full-time paid carers. It is likely that the number of informal care hours will have increased hugely amidst the pandemic, with social care services (e.g. day centres) closing and care staff self-isolating.
Last year, I interviewed 21 older carers (average age 75; 20% were 80+) who were caring for their family members with learning disabilities and/or autism (see ‘Confronting a looming crisis’). The accounts from carers demonstrated their huge capacity, energy and resilience to provide the best possible quality of life for their loved ones as they enter old age. Yet four main issues common to the group highlighted their struggles as they grow older and, inevitably, frailer – outlined here (identifiable characteristics have been altered):
Transition to retirement – a misnomer
Carers reported having taken on more caring obligations, not fewer, as they entered retirement age, due mainly to the impact of health deterioration on themselves as well as of their loved ones. In general, people with learning disabilities and/or autism experience a poorer health profile, particularly as they get older, compared to the general population. In the absence of specialist learning disability health care (e.g. only one of those interviewed mentioned they had access to a learning disability nurse), many reported that they themselves provided direct health as well as social care. Other behavioural changes linked to the ageing process could be very challenging for some family carers to manage:
“Roger has definitely become more autistic, more routines. I am having a real battle with him.”
Their caring role had become extended and more complex. It now included: arranging transport for their loved one to get to and from GP and hospital appointments; administering medications; adjusting weekly timetables including liaising with support workers and other professionals; ‘checking up’ on support workers to make sure that tasks were carried out properly, or ‘keeping an eye on’ their loved one and arranging services.
Since no ‘informal carer job description’ exists, carers reported feeling as though they were taking roles that would ordinarily belong to formal paid carers and care managers. Such willingness to continue caring also risked being hidden from social services. In some cases, the onus was put on family carers (who are tired and have no time) by professionals to ‘look up information’ themselves using ‘toolkits’, and do tasks that the professional could do much more efficiently:
“It feels like we have to know everyone else’s job [care professionals] [but] they only have to know about us”.
There was virtually no respite from the day to day tasks of the family carers:
“We have this thing that we are not entirely free” (014)
The Care Act – is it working?
Whilst individuals talked positively about the Care Act 2014, the duty of the LA to undertake comprehensive needs assessments for both the person with a learning disability or their carer appeared not to be routinely or adequately performed:
“Joy has had a [needs] assessment and it really worries me and I can’t say we noticed much difference once we had had it. They said ‘you are not getting enough care but saying this, we can’t afford it’. The social worker said this - they would put her on a waiting list as a first step and if something comes available we would be notified” (018)
Challenges with services
Issues included not having a consistent social worker or key person to deal with their family member’s case, and perceived lack of expertise and pejorative attitudes of staff which threatened carer-social care trust:
“...umm social workers come and go – learning disability nurses come and go and of course life happens but nothing is standing still for my [loved one] and it makes for a very scary world for [them] I would say” (005)
”…when I had complained about the lack of support we were getting, she said “Oh when did [loved one] catch Down’s syndrome?” (007)
“Social services have been patronising to me. I am capable and competent” (016)
Fears for the future
Everyone talked about their fears for the future which mainly centred on what would happen to their disabled loved ones if they were to die. For most participants who had spent a lifetime ‘managing’ care as well as doing the practical tasks of caring, the question of who would take over their role was pressing:
“I hope [loved one] goes [dies] before me. We have organised [their] funeral…I was ill earlier this year and so I am anxious..” (014)
“As I get older…there is nothing I can do – I do my best. All I want is to see [them] well treated. My aims are modest. I just want [them] to be safe, healthy and happy but [they are] none of those at the moment.” (016)
That all of the study participants are now in the COVID-19 ‘vulnerable’ category will only have heightened such fears. A recent follow up with some of the carers revealed other impacts of the pandemic. For example, day centre closure under lockdown, with no alternative services has reduced care hours by 100% for some individuals. Many have also experienced cuts to their domiciliary care – with little or no prior discussion from the local authority.
As a consequence, one carer reported that their loved one “is now being left alone in their flat for 19 hours a day”. Another carer said that although their adult child appeared settled and ‘placid’, they worried that he was not eating well. Still other parents had been asked to host their family member with a learning disability and additional health issues during the pandemic; their supported living environment with staff changes now deemed to be too high risk. These issues reflect difficulties found across the country. The Challenging Behaviour Foundation (CBF), a charity supporting families of people with learning disabilities, is recording unprecedented enquiries for help and support. Vivien Cooper OBE and CEO of CBF comments:
“Families are important to us all and often provide a lifetime of love, care and support for relatives with learning disabilities. This care and support can be significant, whether provided within the family home or when the person moves out of the family home.”
“Currently, with the additional pressures and concerns, acknowledgement of the crucial role families play and providing them with practical support should be a high priority nationally - but there is little evidence of that so far. Access to information and support can be difficult, especially if they have no internet access when Government and NHSE guidance is published only online. Lack of internet access prevents families contacting others in similar situations with shared experiences during COVID-19 in the way that someone who is connected online might. Many families, managing their own health needs as well as supporting their relative with a learning disability, are feeling isolated and forgotten.”
What will it take for informal family carers to get proper recognition and practical support?
For questions concerning the law surrounding care and support, please see the Challenging Behaviour Foundation (CBF) Covid 19 FAQs from Legal Panel.
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All articles posted on this blog give the views of the author(s), and not the position of the IPR, nor of the University of Bath.