In response to "Decommissioning normal: COVID-19 as a disruptor of school norms for young people with learning disabilities".

Who am I?

My name is John Paul Donnelly, l have been a Member of Glasgow Disability Alliance (https://gda.scot/) for 6 years, doing various courses and being a disabled activist. In 2019, with the support of GDA, I myself and a few members had worked together—we were called the Fantastic 6—had put on a Big Event in our local community to let people know what is happening in their local area and what support is out there. During Christmas 2019, we set up a local event to tackle isolation and loneliness, which we have all seen during the big 2020 COVID events. During the pandemic, with support from Hannah Macpherson and GDA, I was asked to review the Peter and Friends Talk about COVID‐19 book written by Steve Hardy because, during lockdown living with a disability has been a nightmare, not just for me but for other disabled people and GDA has supported 5000 members from all over Glasgow through Zoom and a phone calls. We would have all struggled during COVID, but GDA were our heroes. I worked with Hannah before on another paper with Alex Kaley and people from Self Building our Lives (http://selfbuildingourlives.org/), and we did a paper with a couple other of members on belonging and not belonging to society. So this was getting to write a different kind of paper from Self Building with the support of GDA.

Why did I choose this paper?

I have chosen Decommissioning normal: COVID‐19 as a disruptor of school norms for young people with learning disabilities from the papers in this issue to respond to. This is because, looking back when I was at school with a disability, if COVID was around then that would be 20 years ago, we did not have the proper equipment, that is mobile phones, tablets and iPads that are out just now or even the apps like Zoom or social media to connect with friends or other people. If you were struggling, we never had an organisation like GDA. We had schools or families or communities to help us but looking at schools and other places that support people with learning disability in this pandemic is just what we need because if you are struggling, the schools can help or if you do not have the right equipment organisations like North West Glasgow Voluntary Sector Network were giving out iPads and stuff to help young people to connect, and some schools were giving out materials like paper, pens and other stuff to help for parents. GDA even supported young‐disabled people because they just do not deal with adults, they deal with a majority of people. The Scottish Government (2020) did a report to find out how young people cope up with coronavirus and child poverty. They said about resources for learning, “one of the common barriers mentioned by parents and carers is the lack of resources for learning at home, including digital devices, printers and stationery. In addition, parents and carers report struggling to support home learning due to other responsibilities, particularly having to work or having to care for other children or family members.” They say, “When schools reopen: children and young people are mostly looking forward to seeing their friends and teachers, and parents want the primary focus of schools to be on emotional support and well‐being.” In addition, “Some carers report having to give up employment due to caring responsibilities.” They note that Carers of United Kingdom conducted a survey of adult unpaid carers, which had 5047 respondents: “The findings highlight financial and mental pressures placed on unpaid carers due to COVID‐19 and removal/reduction of formal and informal care support. The report includes some issues related specifically to people who care for disabled children;”

The reduction or removal of formal support, particularly specialist provisions for those with high levels of support needs. Some carers report that school hubs were unable to provide support previously available at school due to low staffing levels.

Lack of routine leading to worsening conditions for learning disabled young people and young people with mental health problems.

Financial pressure of having to buy equipment and toys to use at home that would usually be accessed outside the home, as well as increase utility costs

Difficulties in accessing essential items if unable to leave the house due to caring responsibilities.’

So this is why I have chosen this paper.

My feelings on the paper

Reading Decommissioning normal made me think as a person with learning disability at school, we are different from other people. People may have found it difficult to deal with home learning but then pushed through the negative thoughts like, I don't have certain things or people who can help me because there are lots of people in various situations all over the world. In Glasgow, if a youngster could not do the work online then they would leave it and try it again some other time or speak to the tutor, and if that did not work, there was support out there like GDA, ENABLE Glasgow, small organisations like Possobilities who do a learning programme, and there was the Family Fund to provide certain courses or items, especially for parents who have a disability to help the child, or they could contact schools to get material because schools were advertising on social media, that is Facebook, Twitter to parents and young people about the available material and video for young people to study or show them what to do. If that was back in my days at schools 20 years ago as I said we did not have the equipment like laptop, tablet, iPads or video calls or even Zoom or even social media to connect with family and friends from school. Teachers would have to phone lots of people to find out how people are or do we need any material. Now, we have amazing support to help people to support with updated apps or projects.

What the writers of the paper do well

The writers explain very well academically in the paper, although some words were difficult to say but with the help of google or family, they made it more easy to understand and to say, for example you used Erfahrung–that means German for experience. I had to look that word up and there were others because as a person with learning disability, I was like “ok what does this mean,” but apart from that, you have explained how young people from schools have coped during the new normal. Yeah, it has been tough and hard because not everyone would have coped with online stuff. When I did it I was like, how am I meant to cope with Zoom, but GDA was there all the way. I even taught an art class on Zoom. And the methods you used in various ways to find out how people with learning disability were coping with it all, with the socially distanced and online stuff.

What would I like to ask?

Based on the paper, I would like to ask all the writers a couple of questions because it made me really think about: 1, How did Decommissioning normal: COVID‐19 as a disruptor of school norms for young people with learning disabilities get brought into the provisions? Did you all work with a young person with learning disability that was still at school to see how they cope with online programmes and how has social distancing been like in schools for people with a learning disability especially? If some young person is in a mainstream secondary, because not all young disabled people will go to additional needs school, or do you work for an organisation like GDA or any other disability organisation? Question 2: How did you all focus on the methods, who was doing what, who set up the interviews and stuff?

Methods

The methods that were used in the paper were used in various ways to find out how young people with learning disability were coping during COVID‐19 with online schooling in 2020. GDA (2020a) did research and they used the same methods as you apart from they spoke to various people and various organisations to find out how people were coping with COVID‐19 and here is what they say:

From 16 March 2020, GDA suspended all planned programmes due to the Coronavirus pandemic.

The staff team switched to home working and immediately began reaching out to our 5000+ disabled members to listen and offer support, through phone calls, postal mails outs and online. We were extremely lucky that our funders allowed us to redirect resources and employ a fantastic team of temporary workers to help us make over 8000 phone calls, send out 20,000 mailshots, and collect 2100 in‐depth responses to our COVID‐resilience survey.

Our well‐developed infrastructure as a community of identity allowed us to connect with over 5000 disabled people between March and July, and the time and lived experience contributed by our members enabled us to adapt our services, rapidly develop new ones to fill gaps and meet emerging needs during the crisis.

We adapted our Rights Now Welfare Rights project, Future Visions support and Learning programme, to be delivered remotely online and by phone. We quickly set up a new Lifeline service, delivering food and essentials to disabled people unable to access other supports. Our check‐in calls developed into a specialist Wellbeing service, with 2 Well‐being workers supporting hundreds of disabled people to cope and feel heard, and develop strategies to boost their health and well‐being during these challenging times. GDA became one of Connecting Scotland's first pilot communities, helping develop an accessible approach to tackling Digital Exclusion when disabled people most needed it. GDA Connects has sourced, set up and distributed over 200 devices to disabled people, alongside dedicated coaching to help participants get online.

And GDA (2020b) wrote:

Participatory Budgeting is a way for people to have a direct say on how public money is spent. Disabled people, and GDA members, are all too familiar with the tick‐box approach to involvement, where powerholders’ plans are presented for our comments, with little time or scope for change or a meaningful dialogue—it leaves communities and disabled people, in particular, feeling powerless, frustrated and unheard.

PB seeks to change this, by involving communities and citizens from the outset, in setting priorities, designing ways to tackle them, and making decisions about how best to use our collective resources. Councils across Scotland are aiming to commit 1% of their budgets to Participatory Budgeting processes by 2021.

GDA has been involved since 2017, with our action research project ‘Budgeting for Equality’. Our peer researchers found that disabled people want to participate, but are often excluded for doing so. The barriers that stop us to participating are exactly the issues disabled people would want to address whether they had more say over public resources—so disabled people are locked out of decision making, by a cycle of exclusion. GDA members made recommendations for a more inclusive accessible roll‐out of Participatory Budgeting in Glasgow and Scotland, and continued to work in partnership as Glasgow City Council launched PB Pilot projects in 2018.

GDA ran capacity building and awareness sessions with our members and other disabled people in each of the 4‐pilot wards, to support disabled people's access to and involvement in the processes. Our second PB report “Leaving No‐one Behind” shared learning from these pilots. GDA members in Canal and Pollok wards were successful in their proposals and applications, and we continue to support these groups to drive forwards their ideas and share learning along the way.

COVID‐19 has disrupted plans and lives across communities around the globe—and the pandemic has shown more starkly than ever, that those affected by inequality and exclusion must be involved and heard in planning solutions. GDA’s COVID‐19 response was shaped directly by extensive engagement with our members, who highlighted huge gaps and unmet needs during the lockdown and beyond—and we continue to channel this expertise and our members’ lived experience into emergency and resilience planning in Glasgow and Nation‐wide. As discussion turns to how Participatory Budgeting can support COVID recovery and resilience planning, GDA members are ready as always to speak out and contribute their ideas.

Is the research important to the lives of people with learning disabilities?

The research you did for the paper has been important for many disabled people because you put a lot of work into it. You did a lot of research into it because reading it made me think, what if I was in that situation and 20 years ago I was at secondary school, how would we cope who would have listened to us in the past, none of us had voices to reach out to the important to listen to us only schools and families there were no organisations, now there are so young people are getting listened to hopefully. They are in schools during this pandemic because this pandemic has had an impact on young people's mental health as well, so your paper has spoken with young people who have given their opinions and hopefully in the future it will help other young people whether they get put in a situation like the pandemic—what is out there, what organisation can help them, how can schools improve their ability without the struggle.

You have to show this paper to all the local additional support schools and support workers and support careers organisations that deal with young people with learning disabilities and other disabled people. I would even send it to families with learning disability and get their support on the answer, that is celebrity parents Christine McGuiness, Sam Bailey, Katie Price and many more, and even your local MP or the government or the NHS.