People with learning disabilities – COVID-19 Support and Action Group Wednesday 29th September 2021

1. Present Andrew Kieran Philipa Apologies: Peter Sarah Simone Firielle Joanne Olcay Ray Charles Geraldine Jenny Gary 2. Introductions Andrew welcomed everyone to the meeting and asked everyone how they were feeling. Andrew reminded everyone that we use the same Zoom link every week. Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675 1 We all recognise that speaking up is important. The question is HOW. Where we do we start if we want people to come to us anytime they want to know what people with learning difficulties think? What are the steps? Simone: I think we need to have a real conversation about working from home and support. Andrew: Support is a category in itself Geraldine: What support are you thinking is needed Simone? Simone: Because I do paid and unpaid work, I’ve noticed as more people are working from home, it’s more difficult to get people to see beyond peoples 4 walls, and maybe we need more flexibility. It’s very hard not meeting up and doing events together. There was before this a sense of comradeship and I’m struggling. 2 Ray: This is Black History Month. It’s good that some of the media have taken notice about what are the issues being black in this country. We’ve got to challenge the values as to why there’s always racism going on. Some people with learning difficulties get agitated about people who don’t think about us in terms of Covid-19. Sometimes people get really hurt. We want people to take more notice about how we feel. Andrew: So Ray, these are all things to speak up about? Firielle: The third vaccination is coming and I hope everything will get back to normal again and we can stop Zoom meetings and have face to face meetings Chris: We talk about raising our voices....how do we do it and stay calm? We need to get people’s attention. We need to make our point in places it needs to be made. We have to move with the times. 3 Olcay: I heard that we may go into another lockdown in the wintertime. Kieran: I’ve not heard anything official about another lockdown. I’m also fed up with Zoom but when this changes we need to factor in travel time etc. and we’ll end up doing a lot less so we’ll have to prioritise what’s important. Simone: For me it’s been a disaster for people with learning difficulties doing things on Zoom Ray: I don’t think the government wants another lockdown. I feel like we’re all coming out of this pandemic. For people over 50 like me, I should be getting an email about the booster vaccination and this is important because of my asthma. This will mean we can do what we want and last year we couldn’t. Chris: we can’t afford another lockdown; it’s probably going to take 3 years for the country to get from where we were before Covid to moving forward. 4 We’ll all need our own starting points around building confidence and what support we need as well as our mental health. Social care is now on the agenda so this is a good opportunity. How can we work together as the conversation sounds like we all live in day centres and residential units. We need to wake society up so that they know this isn’t the case Andrew: How do we get organised? How do we move forward? We’ve raised lots of issues but how do we get organised Firielle: How I get organised is having the Zoom link to this meeting the night before Simone: We should try to make a commitment to organise a national People First conference. We need to go out more often. Firielle: We need the right information in order to get organised 5 Kieran: This group is getting better organised and we’re communicating better with each other. We’ve talked a lot about setting up a WhatsApp group but we’ve never got this off the ground. Chris: We do need to meet people face to face at the end of the day. At some point we’ll have to travel. Simone: Us turning up in person was very important and made a difference to Heidi’s court case. I’d like to propose that I come in on Wednesdays in the office and we can Zoom into this meeting together. I’m asking you to consider this. Olcay: What you are all saying is overwhelming. I know we need to build our confidence but some people’s confidence went during Lockdown. It’s just not there anymore. I look around and there’s nothing there to support our mental health. 6 Phil: Anxiety is when we feel very worried and scared all the time and that worry stops us doing things. Olcay: Yes! We’re not making these feelings up. Crowds get my anxiety up. Charles: I feel that we need to get the authorities to listen Geraldine: Travel is expensive and for Charles to go to a conference it will be very stressful. We need to get MP’s on board as they don’t care about people with learning difficulties. I think we should all send letters to our MP from. People First. Then we need to march to parliament. Simone: We all communicate in different ways and some of us need to meet in person. Andrew: We’ve learnt a lot from Charles and it was really helpful when we read Charles’ story at our conference. 7 Firielle: We should write a letter to support Heidi. She’s right Simone: Heidi is waiting to hear from the Court of Appeal and then we’ll know what to do next. Kieran: I don’t think anyone talking about having a massive conference next week. We’re talking about small baby steps........then maybe something a bit bigger until it snowballs. It could be regional. We need to work on the Direct Action Network and DPAC with Heidi. Simone: There’ll be opportunities to do things in different ways Chris: Some people may not want to travel some do so it’s about personal preferences Ray: When we go back to where we came from at the start of the pandemic we weren’t sure what to do and how to communicate. Now we do. 8 Charles: Not sure everyone understands what it means to get everyone to listen. I sometimes think that people listen but they do not hear. My mum has been talking to long. They do not listen to her what is needed. Andrew: Often we talk about support and the system talks about care. If you’re looking from a disabled people’s point of view your mum’s playing a support role and help you bring your important points to the meeting. Medical staff have been trained differently and they don’t always understand when someone is supporting and when care is needed and I’m worried the gap will get wider because politicians don’t get the important messages that disabled people are saying. Charles thank you for helping us understand where you’re coming from. 9 Next meeting: Wednesday 13th October 12:30pm – 2:30pm https://us06web.zoom.us/j/97471173675