Care packages have at least halved for most people with learning disabilities during the Covid-19 lockdown as their needs have increased, carers have reported.
The impact has been reduced independence, poorer health and more pressures on carers, found the online survey of 1,069 family members and carers carried out by Mencap in late June and the first half of July.
Two-thirds of respondents (65.3%) said the amount of social care support their loved-one received from their local authority had at least halved, in terms of hours, during the lockdown.
The lockdown has seen mass closures of day and short break services services, shut special schools and residential colleges, reduced social support and cut home care in line with social distancing requirements.
Most carers (67.4%) reported increases in need among the people with learning disabilities they care for during the shutdown, with 35.9% saying it had increased a lot.
Negative impact on lives
A majority reported negative impacts on the person’s social lives (88.8%), relationships (73%), mental health (69.2%), independence (67%), behaviour (57.1%) and physical health (54.4%).
Unsurprisingly, almost four in five (79.1%) carers said they were providing increased care and support, with 60.9% saying their own role had increased a lot. Negative impacts were reported by most carers on their mental health (75.3%), social life (73.2%), independence (63%), physical health (61.4%) and relationships (60.3%).
“He was at residential college supported by an active programme of learning and life skills. This has stopped since mid-March. He has regressed, he has become subdued and is ripping his clothes and being destructive.” Mother, 57, to 22-year-old son with a learning disability
“We have worked so hard for a number of years to support my daughter to join in group activities. Due to COVID-19, she has been confused and [is] completely shutting down [and] refusing to communicate.” Mother, 50, to 15 year-old-daughter with a learning disability
Mencap chief executive Edel Harris said the findings showed “clear signs that the system has broken and people with a learning disability and their families are paying the price”.
A spokesperson for the Association of Directors of Adult Social Services (ADASS) said: “This report paints a devastating picture of the impact of Covid-19 for those of us with learning disabilities, our carers and our families.
Echoing a point also made by Harris, the ADASS spokesperson added: “It makes clear why fundamental reform that works for working age disabled people, older, carers and families is so urgently needed.”
Scott Watkin, a self-advocate who is co-chair of Learning Disability England’s representative body, said: “As a person with a learning disability and the parent of a child who has additional needs, the pandemic has been extremely disruptive. The kind of support we need has changed so we’ve had to be creative in the way we use our money, and the way we sure all members of our family are heard.
“This issue isn’t just about funding. It is also about people. Now is the time to focus on how we come together to use these opportunities and what we have learnt to move forward together.”
His fellow co-chair, Wendy Burt, a family carer, said she was not surprised by the findings and that the negative impact of the pandemic on people with learning disabilities and their families could not be underestimated. However, she said the situation had “given us all a great opportunity to do things differently, and to work to create and share solutions with each other”.
She added: “Let’s build on the community-led creativity, and make sure families and people with a learning disability continue to co-produce solutions from now on.”