Care packages halved for most people with learning disabilities during Covid, report carers

Needs have increased leading to negative impact on independence, relationships and health and more pressure on carers, finds Mencap

A boy being comforted by parents/carers
Photo: motortion/Adobe Stock

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%).

Carers’ stories

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.”

‘Creativity’

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.”

6 Responses to Care packages halved for most people with learning disabilities during Covid, report carers

  1. jim August 11, 2020 at 1:40 pm #

    the Councils and Health Trusts throughout the UK are being so utterly ruthless in their determination to keep covid out of their daycentres and short break facilties to the point where they are being oblivious to the massive damge their own prevenatative measures are doing and have yet to do to the very service users and carers they say they are trying to save and help.

    They have to strike a balance and accept that they cannot eliminate all covid risk. Many learning disabled adults have no underlying health conditions and are no more at risk than other adults under 60 so the Councils need to think smart and if necessary have those less at risk placed within the one centre and those most at risk isolated in another daycare setting. This is better than reducing a low risk adult’s daycare from 5 days to 1 day per week and putting huge stress and extra time onto them and their carers.

    • Ian Wells August 14, 2020 at 9:04 pm #

      I believe this is the route most council’s will take in not opening the centres as there agrender is to completely close the centres.
      What a way to do this and blame covid-19 at the same time.

      • jim August 24, 2020 at 11:46 am #

        spot on Ian. Long before covid my local Authority learning disability adult service was sending round letters to service users and their carers advising that they were looking at ways of ” reforming” statutory day centres by lookig at more alternatives like day opportunities and other providers. Of course this meant reducing the number of days given to service users but trying to dress it up as some sort of improvement! But many carers were not buying this manipulation and the Authority could not interfere with already agreed care packages absed upon need but of course now covid has given it a golden opportunity to set aside all such assessed needs etc by citing public health risk etc. Its appalling opportunism by managers

  2. P. Hamilton August 11, 2020 at 4:19 pm #

    Would that it had been only 50%. 100% in our case and still the same now. Physical disability plus learning difficulty we are on our knees trying to cope. Everything stopped some activity groups have said will never reopen as lost so much funding, LA respite still closed. Gone from full active life to sitting home doing nothing.
    Negative impact on physical and mental health on whole family.

    • jim August 24, 2020 at 12:00 pm #

      agree and the social workers I know of are not challenging this or fighting for their clients. My daughter went from 5 days a week daycare to none for nearly 4 months but now is up to 3 days per week maximum only because me and my wife are key workers and kicked up merry hell about it.. They will not give us back our 5 days but have thrown money at us to hand us the problem of employing people to do 2 days at home with our daughter even though I cannot get anyone who can be guaranteed to be availabe for the same set days each week from 9.30 am to 3pm [daycare is also only 5 hours long at present]

      They will not use their daycare workers to do outreach in my or any home for those hours even though they have the same number of staff looking after 75% less service users at the centre. And the staff are not ”redeployed” any longer to other places as the Authority claims..but they cannot and will not break it down for me as to what these surplus staff are actually doing other than some additional work needed with sanitising and heping with socially distancing! its total opportunism and it has to be challenged now by every carer

  3. Fred Elliott August 17, 2020 at 9:16 am #

    Councils knew what they were doing but were given the green light by the government to divert funds. As always, the human cost was ignored. Even by those who knew exactly what they were doing.