COVID–19 Key Issues for people with learning disabilities – Blog 1
Living through the coronavirus pandemic – what are the urgent issues for people with learning disabilities in November 2020?
As part of our project [see more here www.covid19learningdisabilities.co.uk] we are finding out about the urgent issues for people with learning disabilities and families of people with greater needs as the coronavirus pandemic continues, so we can make sure our surveys reflect what matters to people over time.
These are the most important and urgent messages we heard about people with learning disabilities living through the coronavirus pandemic as a second wave of lockdowns were beginning to hit across different parts of the UK. The issues people talk about are very similar across Scotland, Wales, Northern Ireland and England, and the issues we picked up are very similar to those reported across a range of sources (see our brief summary report www.covid19learningdisabilities.co.uk/results for a list of these sources).
Urgent issues for people are changes in support, health concerns, restrictions on seeing family, lack of information, and experience of using digital platforms.
Changes in support. Reductions or removal of support during the coronavirus pandemic is a major issue for people with learning disabilities. Changes to support include the removal of care packages, including home care, day centres and day activities, and reduced or no contact from community learning disability teams and other professionals. Some people are continuing to be charged for services and supports that have stopped. Face to face support has often been replaced by reduced levels of contact by phone. Direct payments have for some people been suspended or stopped, with no clarity about when they might be restored. Some people are worried that local authorities may try to justify not restoring care packages based on the fact that people have been ‘coping’ during the pandemic. Young adults with learning disabilities who are supposed to be ‘transitioning’ from education to adults services are being left in a state of limbo.
Assessments have also been delayed or their format changed in ways that people don’t always find helpful.
Taken together, people with learning disabilities can feel abandoned by services and professionals.
Health concerns. As the coronavirus pandemic continues, people are anxious about catching coronavirus and worried about the impact of the pandemic on their mental and physical health.
People with learning disabilities can be anxious or frightened to go out because they are worried about catching coronavirus, partly because other people’s behaviour (e.g. not complying with social distancing) can put them at risk.
People with learning disabilities are worried about being able to access the healthcare they need, including GP appointments, routine hospital appointments, and getting their prescribed medication. They can also be concerned about whether they will be treated fairly by health services if they do catch coronavirus.
Restrictions on seeing family. Limitations on access to family members is also an issue among some people with learning disabilities living in shared accommodation, where restrictions do not allow visits to and from their family.
Lack of information. A really big issue for people with learning disabilities is the lack of clear guidance and accessible information about coronavirus and what the rules are about restrictions on people’s daily lives. Clearer guidance on shielding, when people should self-isolate, and how to get a coronavirus test are all urgently needed.
Using digital platforms. Throughout the coronavirus pandemic, some people with learning disabilities have been using digital platforms for the first time or more often than they used to. This can mean more contact with extended family and friends and more regular contact with other people, for social reasons and for connecting self-advocacy groups. Other people with learning disabilities are experiencing digital exclusion. They may not have access to the right equipment or the internet, and it can be difficult to gain the skills and confidence needed to try and use new digital platforms.
There is no doubt that the life changes associated with the coronavirus pandemic are affecting the lives of people with learning disabilities across the UK. Shielding and social restrictions are significantly increasing social isolation for some people with learning disabilities. People with learning disabilities can feel that society has forgotten about them, as their usual supports reduce or stop and their social lives are curtailed.
Chris Hatton and the Project Team