Analysis

Why people with learning disabilities and their families fear another COVID-19 lockdown

When the pandemic hit already depleted learning disability care services were cut back or closed leaving many isolated

When the pandemic hit already depleted learning disability care services were cut back or closed leaving many isolated

  • Support and activities have been curtailed, and charities say thousands could lose their independence and need more intensive support
  • Some households with adults who have a disability would struggle to cope with another lockdown and appear to be at breaking point
  • One charity wants learning disability nurses to use their influence to help unlock problems in the social care system

Picture: iStock

In recent weeks, large parts of the UK have faced local lockdown measures to try and contain further COVID-19 outbreaks after a summer where some rules had been relaxed.

But the

When the pandemic hit already depleted learning disability care services were cut back or closed leaving many isolated

  • Support and activities have been curtailed, and charities say thousands could lose their independence and need more intensive support
  • Some households with adults who have a disability would struggle to cope with another lockdown and appear to be at breaking point
  • One charity wants learning disability nurses to use their influence to help unlock problems in the social care system

Young man with Down's syndrome. Services for people with learning disabilities have been restricted during COVID-19

Picture: iStock

In recent weeks, large parts of the UK have faced local lockdown measures to try and contain further COVID-19 outbreaks after a summer where some rules had been relaxed.

But the charity Learning Disability England warns that for some people with learning disabilities and their families it feels as if they are living in a perpetual cycle of COVID-19 lockdown.

Day centres, respite care and support in the home have been cut back or closed

This stark warning comes amid mounting evidence about the lasting impact the pandemic has had on care services that are relied on by people with learning disabilities.

Day centres, respite care and support in the home were cut back or closed entirely as the country went into lockdown earlier this year, and in many places those services have still not resumed.

Seven out of ten

people with learning disabilities have seen care packages reduced

Source: Mencap

According to surveys of families by learning disability charities Mencap and Sense, that is taking its toll.

A Mencap survey obtained responses from 1,069 people across the UK about their experiences during the pandemic.

Many say hours of support provided has halved or more

Nearly seven in ten (69%) said the amount of hours of support being provided had decreased – with the majority saying it had halved or more.

Families said this was affecting mental health, relationships, physical health and independence.

One mother described how her son, who had been involved in an active programme of learning and life skills at a residential college, had now regressed and become destructive with nothing to do.

Edel Harris, chief executive of the charity Mencap
Edel Harris

Mencap chief executive Edel Harris says she was ‘really shaken’ by the results.

‘No-one could hear these stories without feeling ashamed to be part of a society that allows this to go on.

‘People with learning disability and their families must not be left behind.’

Similar problems have been identified by Sense, which polled 1,000 people caring for disabled adult family members in their household. More than one third (38%) of respondents had seen support and care reduced. Three quarters had no advance warning and one third were still waiting for support to be reinstated.

This means families are being left to provide care alone in some cases, including lifting, feeding, personal care and physiotherapy without any support.

People with disabilities are twice as likely to report a decline in mental well-being

Sense said families are at ‘breaking point’: half of the respondents said they feared they could not cope with a second lockdown.

Findings from the Office for National Statistics, published in August, show people with disabilities are more than twice as likely as the general population to report a decline in their mental well-being and feeling lonely.

Exhausted and let down: how families feel about reduced services

Shelagh Thompson and her husband have two sons with severe and complex disabilities – Karl and Dave, in their twenties.

Before the pandemic she received help from six regular support staff to provide round-the-clock care.

Dave, in particular, has behaviour that challenges and needs two-to-one support at all times.

Dave Thompson, who has complex disabilities, and his mother Shelagh with pet dogs

Dave and Shelagh Thompson

That was reduced to one person in the spring and has remained at that level since.

Respite services have also closed and all-day services have stopped. It means Ms Thompson herself is providing about 100 hours of care a week.

She feels exhausted, isolated and let down, while the lack of support has had a negative effect on her sons.

‘I am so angry. The government has ignored the role of the unpaid carer and the massive sacrifices many of us and our families are being forced to make because services have been closed.’

She fears it is will get worse. ‘We are now returning to a deep recession. What on earth is that going to mean? More cuts? The most vulnerable in society will be hit the hardest.’

Reuben, Gary, Jane and Faith Tasker. Faith has autism, complex disabilities, is blind and hearing impaired

Reuben, Gary, Jane and Faith Tasker

The Tasker family feel the same. Faith Tasker, aged 20, has complex disabilities including autism, and she is blind and hearing impaired.

When the lockdown began the day service and respite support she received stopped and she was left in the care of her family. Seven months later the support has still to be reinstated.

Her mother Jane says: ‘The hardest thing is the lack of information about when the support will be reinstated or even what the plan is. You feel like you’re chasing people for updates and then getting fobbed off.’

Learning Disability England chief executive Sam Clark says the evidence is clear. ‘Lockdown has, in many ways, not ended for people with learning disabilities. The services they relied on and the activities that enriched their lives, from dance clubs to book clubs, are no longer running and the digital offerings that have been developed instead do not always work that well.

‘The volunteering and work opportunities they had are not there any more. There are people in registered care settings who are not allowed visits. It is having a devastating effect on people with learning disabilities.’

‘My concern is that we will see thousands lose their independence’

Sam Clark, chief executive of Learning Disability England

She predicts this will have a knock-on effect and impact learning disability nurses.

Two thirds

of families say the needs of their loved ones with a learning disability have increased

Source: Mencap

‘My concern now is that we will see thousands of people lose their independence and need more intensive support – and that will put pressure on hard-pressed nurses and those services that provide more intensive support.’

It is a concern echoed by RCN learning disability nursing forum chair Jonathan Beebee.

Low-level day-to-day support and activities have been hit

He says: ‘I run a social care service that provides 24/7 supported living. Services like mine have generally been well-supported by local authorities. Some gave a 5% uplift to cover the cost of personal protective equipment and extra staff needed, some asked for the extra costs to be detailed. But overall financial help has been given.

Chair of the RCN's learning disability nursing forum Jonathan Beebee
Jonathan Beebee

‘This is very hard for families and for people with learning disabilities. They rely on these services – they provide structure, and help build relationships and meaningful engagement for people with learning disabilities.

‘Without these services families have been left isolated. The risk is that leads to family breakdown and the needs of people with learning disabilities increasing, which puts more strain on services like mine.’

It is clear that solving the problem is going to be difficult. Learning Disability England is due to publish a report that will highlight some of the pockets of innovation that have emerged.

These include Durham County Carers Support, which used short breaks funding to help families connect online, while in Oxfordshire a local charity has organised videoconferencing meetings between families and the local council to discuss ways to restart services.

But such examples are few and far between, says Ms Clark at Learning Disability England.

‘Learning disability nurses can be the voice of reason and creativity’

She would like learning disability nurses to use their influence to unlock the system. ‘They can be the voices of reason and creativity – they can point out the risk and give people the confidence to be more bold. I understand why providers are worried. The problem is that people with learning disabilities often have people helping to make decisions for them. It makes the decision-making cautious.’

But the bottom line – as always with social care – is funding. Reductions in budgets over the years have meant services are not robust enough, staffing insufficient and the infrastructure not in place to adapt to the changes needed to create COVID-secure settings.

Long-term and sustainable funding for adult social care is needed

Local Government Association community well-being board chair Ian Hudspeth says extra investment is the only solution. ‘Councils are doing all they can. Social care deserves parity of esteem with the NHS.

One in two

families say they could not cope if there is a second lockdown

Source: Sense

‘This needs to be backed up by a genuine, long-term and sustainable funding settlement for adult social care, which we have been calling for long before the current crisis.’

Independent nurse consultant Debra Moore says that the promised cross-party talks cannot come soon enough.

A new package for people with learning disabilities

But she wants the pandemic to be a springboard for change too. ‘Reform is long overdue. Families have been left without support before the pandemic. It is even worse now.

‘There are some fantastic services out there, but there are some that are outdated and not what people with learning disabilities and their families want or need.’

She would like to see greater emphasis on finding employment, meaningful engagement and promoting independent living as part of a new package for people with learning disabilities.

‘I would hope we use this as an opportunity to rethink social care.’

Problems seen across residential care settings for all ages

Much of the focus on care homes has been on those providing care to older people.

But a survey by the Queen’s Nursing Institute (QNI) suggests that settings providing support to younger adults with disabilities, including learning disabilities, have been affected too.

The online survey of 400 members of the QNI’s care home nurse network during May and June, which obtained 163 responses, found problems across residential care settings for all ages.

Accessing healthcare for people with learning disabilities during COVID-19 is difficult

Picture: iStock

One third of participants provided care to younger adults – they were mainly registered nurses, although some managers responded as well.

Concerns were also raised over inappropriate use of do not attempt resuscitation (DNAR) notices.

One in ten of those surveyed said they were aware of blanket orders being introduced on whole groups, or families not being properly consulted on individual orders made by GPs, clinical commissioning groups and hospitals.

Half of those who raised this issue worked in settings where younger adults were living.

Issues in primary and secondary care

Accessing healthcare was highlighted as a problem. One in four said they experienced difficulties accessing hospital care and one third experienced problems with GPs.

Staff said they had struggled personally during the pandemic. Eight in ten cited negative experiences, including not feeling valued and feeling unsupported, while more than half said their physical and mental health had suffered.

One fifth said they felt proud of how colleagues had risen to the challenge.

QNI chief executive Crystal Oldman says it has been an ‘extremely stressful and anxious period’ for staff.

‘Urgent attention must be paid to the sector if the workforce is to withstand the additional demands of the pandemic.’



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