A lifeline for people with learning disabilities
Covid-19 is devastating for the 1.5 million people living in the UK with learning disabilities. The Care Quality Commission published figures that show a 175% rise in unexpected deaths of those with learning disabilities from 10th April to 8th May, when compared to the same period last year.
"People with learning disabilities crave routine, reassurance, familiarity and friendship." - David Stanley, Fellow
There have also been reports of Covid-19 tests being refused for those in residential care, and fears that they will be at the end of the queue for a ventilator or not treated at all. Adults with learning disabilities will be among the last to be released from lockdown and many will find it impossible to adapt to such a changed way of life.
People with learning disabilities crave routine, reassurance, familiarity and friendship. Many do not understand what ‘pandemic’, ‘social distancing’ or ‘lockdown’ mean. Trapped inside their homes, their social skills, self-care and self-value will suffer, worsening an already increased risk of loneliness, depression and dementia. They typically have underlying health conditions, so even the most innocuous illness can be a death sentence. Vital care, medicine and equipment is more unreliable during lockdown, leaving the choice between inviting a potentially infected carer into the home or going to hospital. Breaking the unique bond between client and carer can be devastating and puts a huge strain on families.
During the current pandemic, thousands of people with a learning disability face all these factors alone. To mitigate these problems, my charity ‘The Music Man Project’ has been providing Zoom lessons, online concerts, live Facebook sing-alongs, music videos, podcasts, blogs, personal video calls and doorstep visits to engage with the nation’s learning-disabled community. Music plays a huge role in the lives of these people and helps their self-expression, communication and emotional control. PhD research at the Royal College of Music by Natalie Bradford provides evidence of this impact, for adults with Down Syndrome who follow our award-winning programme.
I have recently secured a £10,000 grant from the Government’s Covid-19 Emergency Relief Fund, distributed by the National Lottery, to develop these services and purchase musical instruments for this vulnerable group to play at home. Greater access to improved online resources, and the joy of receiving and playing new instruments, will give them life-enhancing opportunity and hope.
My Fellowship to New York in 2019 helped shape my response for those with profound and multiple learning disabilities. The International Academy of Hope in Manhattan inspired me to purchase Adaptive Musical Instruments, which enable students to gently touch a switch to hit a drum, shake a tambourine or strike a triangle independently. I have also maintained contact with Daniel’s Music Foundation in East Harlem, to learn how they are supporting their students with learning disabilities.
I want to ensure that no communities are left behind, regardless of how hard they are to reach or how difficult they are to help. Online learning has been a revelation for my charity, and I will continue to develop this aspect during and after the pandemic, to reach people who cannot physically attend our centres across the UK.
The lesson for the future is this: whilst digital connectivity will never replace the real thing, we should be ready to fill the void if and when these times come again. The pandemic has presented an opportunity to model a wellbeing response to future global crises for the most vulnerable. We must seize this opportunity and create a Covid-19 legacy.
The views and opinions expressed by any Fellow are those of the Fellow and not of the Churchill Fellowship or its partners, which have no responsibility or liability for any part of them.
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