Whilst there is no doubt that the COVID-19 pandemic is limiting everybody’s lives, no one is affected quite like those who are already vulnerable.
Twenty-three-year-old Ellen has autism and relies heavily on groups that encourage independence skills, giving her an opportunity to be active within the community five days a week. Abby Fermont, who is Ellen’s mum and main carer, explains that although Ellen “quite enjoys time to herself” she fears that too much time alone may affect the progress she has made in engaging with peers.
“Before lock-down she was busy FIVE days a week. obviously that has all come to an end… I think she is getting quite bored”
In light of COVID-19, Disability Rights UK have released an updated version of their handbook to ensure that decisions regarding care and well-being are made with the individual’s involvement or consideration of their best interests.
“They have the right to know about decisions made and what effect it will have. Assessment, provision and evaluation of treatment and care provided to individuals during the COVID-19 pandemic must be developed in collaboration with disabled people’s organisations and representatives from human rights bodies.”
Our new DR UK handbook has been updated with information on Coronavirus. The handbook is THE go to for disabled people and DPOs for information on rights and benefits. Order your copy at: https://t.co/6NIlu9aWvL pic.twitter.com/5zF0zGe0To
— Disability Rights UK (@DisRightsUK) April 3, 2020
Abby also discussed how Ellen’s previous routine “kept her busy five days a week and she was beginning to mix and talk with people in her group” she has concerns that “now it has all come to an end, when she goes back it will probably be a restart.”
Abby has adapted the routine at home to help Ellen get involved with helping around the house as it became apparent “she was getting quite bored.”
Abby Fermont describes Ellen’s usual routine, and how they are adapting at home.
Like Ellen, for 34-year-old Emma Newlands who has Down’s Syndrome, routine and social interaction are particularly important for her health and well-being. During the UK’s lockdown, many of Emma’s day-to-day activities have been put on hold.
A usual week would be packed full with swimming at the local pool, shopping, crafting and training opportunities at Camphill Village Trust, Hertfordshire and activities in the community with the ROAR Scheme.
Now that Government guidelines restrict public gatherings of more than two people and many high street businesses have shut their doors, Emma’s social interaction is limited to just three care workers who share 24-hour care throughout the week.
Emma and others who have learning difficulties are able to maintain some normality in their day-to-day life by substituting a group activities for projects that can be managed at home, such as painting, cooking, playing games and reading.
Government guidance for the public on the mental health and well-being aspects of coronavirus suggests that “it’s important to take care of your mind as well as your body and to keep mentally and physically active”. For others like Ellen and Emma who do not completely understand the circumstances, it is equally crucial to ensure these needs are being met.
Advice from Disability rights UK:
- Our individual chance of benefiting from treatment should we have COVID-19 must not be influenced by how our lives are valued by society.
- There is no justification for policies based on age or learning disability that do not treat each of us with respect and as individuals.