Rights and representation – responses to COVID-19

Scottish Commission for Learning Disability and National Autistic Society Scotland worked to represent those they support.
For people with long term conditions, disabled people and unpaid carers, COVID-19 brought with it challenges to people’s rights resulting in the need for representation at government level.
Throughout the Community in Action series we have heard from organisations on a range of responses to COVID-19 and key areas of action for some have been rights, representation and policy. The National Autistic Society Scotland (NASS) and Scottish Commission for Learning Disability (SCLD) worked across these areas to ensure people’s fundamental rights were met during the pandemic.
Following concerns from family members around ‘do not resuscitate’ (DNR) notices potentially being sent to people with autism, the National Autistic Society Scotland lobbied government resulting in explicit guidance being sent out to all health boards to ensure such notices were not sent out to anyone with autism or learning disabilities. Further work from NASS involved ensuring government guidance was given, aimed at police and other bodies, allowing people with autism and their carers to leave home more than once a day and to travel to specific locations, helping people to maintain good mental health and wellbeing.
SCLD put forth a strong human rights response in light of lockdown. They published a human rights statement which stated, with regards to emergency legislation, that: “…every effort must be made to ensure that people with learning/intellectual disabilities’ health and well-being is not disproportionately impacted by measures intended to protect and safeguard us all”. In terms of ensuring representation, SCLD gathered experiences of people with learning disabilities, their families and their carers through a survey to inform their ongoing COVID-19 response.
This work was undertaken alongside a robust response from both organisations in terms of supporting people in their day to day lives, from sharing crucial COVID-19 information in accessible forms to providing peer support groups. Both organisations are continuing their work as we move through the latest lockdown, maintaining support for individuals and their families.
Read more on SCLD’s and the NASS response to the pandemic.
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