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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

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People with disabilities need clear advice

This opinion piece is almost 4 years old

Freelance journalist and disability campaigner Michael McEwan says it is vital that disabled people are getting the information they need during the coronavirus crisis

I work with a number of organisations both locally and nationally, to raise awareness about disability issues and to be a voice for those who often can't represent themselves due to lack of opportunity or understanding. I also have an insight into disability issues as I was born with cerebral palsy.

The coronavirus outbreak has everyone spooked, though hopefully, by taking necessary difficult steps to control the outbreak, the world will be more prepared to face whatever new existence may come of this. We as a society need to pause to consider in particular how this is impacting people with disabilities and their carers in Scotland. And what learning we can take for the future.

Clear information

I think there is an urgent need for clear and accessible advice on this virus for people with disabilities, people living with long term conditions and those who care for them like family, carers, paid or unpaid.

I've been trying to read data on UK Government and NHS Information sites but it is confusing. It's presented in a way that I can't understand, or relate to my situation.

A number of support organisations such as Enable, SCLD, C-Change, Include Me 2 and Scottish Autism have all voiced the serious concerns of their members.

A spokesperson for The Scottish Commission for Learning Disability said: "We know that disruption to routines is challenging for all people. For people with learning disability who can have challenges in understanding information and Learning new skills this disruption can be particularly difficult. We would ask that all public and statutory bodies are mindful of this when producing information about the impact of Covid-19, particularly if it concerns how social care and support is provided. "

Not only do we need clearer information, we also need to think about reassuring messages to people who may be feeling confused, overwhelmed and panicking. Taking care of mental health is more important than ever.

Isolation for those who need assistance and care workers

As this crisis broke I had no idea what to expect, getting more worried as time and media briefings went on , but I was still hoping to continue my work.

During the second week of the crisis we tragically lost a family member, and due to Covid-19 restrictions my parents and I were unable to attend the funeral, a heart breaking and bewildering situation for me.

I've found ways to feel less isolated, and able to continue, in part, my working days as normal through online and calls. I've just had to bring the outside world in, by keeping in touch with as many people, both personal and professional, on a daily basis, but it's not the same.

The Health and Social Care Alliance Scotland has stated that disabled people and those with long-term conditions “are expressing anxiety that no contingency planning arrangements seem to be in place for circumstances in which their carers are unable to provide care for them due to self-isolation."

Michael McEwan
Michael McEwan

I would also agree with this. Although there are contingency plans in place across the UK in a number of sectors, there is no definitive plan in place, as yet, for disability care sector.

Many people with a disability can't isolate themselves as thoroughly as others, as they need regular, hands on help from other people to do everyday tasks, such as personal care, making meals, handling finances and getting to appointments.

People who are most at risk should be prioritised and their needs assessed with contingency planning arrangements made public, clear, and in an accessible format. There are organisations that are doing brilliant work to help with this but there is always more to be done.

Care workers

If you live or work with people with disabilities, or care for anyone precautions need to be taken as stated in NHS guidelines, so you can remain healthy and able to help.

Michael Di Sousa from Barrhead is a carer and shared his story. He said: "I'm a carer for mum and support another family member. I've been going round the supermarkets trying to get toilet rolls and other essentials which are sold out. It's a nightmare and I don't like to think what would happen if I were to come down with anything, getting a doctor's appointment would be another obstacle. I'm vigilant when I'm out and about but I can't say to my family that I'd be climbing the walls if I couldn't get out. It's a particularly stressful time, we look after others though importantly we must also look after ourselves as well"

In this time of crisis we might hope that governments are adapting to better control the flow of information to the public, and are creating an imprint of how best to handle the most desperate of situations on a global scale. History has shown that it is the people who rally together in times of great need and despair, which is why it's crucial to support the most vulnerable in our society.

Michael McEwan is a freelance journalist and disability campaigner