SURVIVOR HISTORY NEWSLETTER

Self Advocate’s Support and Action Group Wednesday 08 February 2023 Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675 1. Present Andrew Samantha Ray Kweku Olcay Phil Chris 2. Apologies: Jenny Russell Joanne Sarah Vicky Andrew welcomed everyone to the meeting. Our last meeting was 25th January. 3. Check-in Andrew asked how everyone was feeling. Everyone shared how they were feeling and their news. 1 Sam said she’s feeling alright and trying to take things easy. She said she wants to get back out to see friends again. It’s been hard to get out because we all live in different parts of London and some of us not wanting to travel because of Covid. She said they try to meet up on Zoom, but she can’t always make the time they meet. Ray said he missed coming to the meeting last week because he met up with his girlfriend in Watford. They went for a carvery. This made up for not seeing each other over Christmas. Other news, the Leeds United Manager was sacked, and they are looking for a new one. Philipa said she is feeling good and thinking about what vegetables to plant in the garden this year. I’m going to France at the end of the month and it’s due to snow. Joanne said she’s planning for the conference at The Grand Hotel in Blackpool for people in the Northwest. She said she’s been nominated for the Derek Award again. Kweku said that adverts went out for a support worker for Waltham Forest People First (WFPF). The deadline is 14th February. The council has delayed the work starting properly since the hosting contract changed from VoiceAbility to POhWER. POhWER will be applying for Access to Work for Kweku. Olcay said she’s been fine but is aching as she went to the gym yesterday. She’s deciding whether to go again tomorrow. She used to go to Slimming World, 2 Chris said he’s been busy. He did at presentation at an Autism Awareness training session this week. Tomorrow he is doing some preparation work for the Oliver McGowan training. He spoke about rates of pay. Chris said he was part of a conversation in the library about who’s to blame when someone doesn’t get the support they need. He also spoke about his kitchen job, which he is signed off from. Sarah said she’s feeling tired but much better than she was. Her infection has gone so just recovering now. She said she’s been planting up seeds and hoping to get out to do more gardening at the weekend. Andrew said he’s feeling good and has been catching up with family at the weekends. We had some follow-up discussion on rates of pay. The National Minimum Wage is £10.42 per hour. The average trainer salary is £38,111 per year. 4. Discussion: Themes for 2023 At the last meeting we agreed to focus on the theme of ‘inclusive communication and independent living’. We agreed topics to focus on over the coming meetings. 3 Topic 1: Our local Councils and inclusive communication Topic 2: Independent Living and inclusive communication. Topic 3: Health (Our first contact with health services, such as GPs, pharmacies, emergency services, dentistry) Topic 4: Dentistry and inclusive communication Topic 5: Specialist therapies and referrals Topic 6: Relationship with health professionals Topic 7: Dentistry and inclusive education. Topic 8: Early deaths for people with learning difficulties Topic 9: Homelessness and inclusive communication Topic 10: Bills, banks and inclusive communication. Topic 11: Informed and supportive decision-making and inclusive communication. Starting with Topic 1, Andrew started by asking ‘Tell us one story about your experience of communication with your local council?’. 4 Sam spoke about miscommunication. She shared an experience of where she asked for support regarding bills, and they didn’t understand what was being asked for and made some assumptions that weren’t correct. It then became a bigger issue and delved into business that wasn’t part of the problem. A meeting is now being set up with 6 professionals to talk about her finances and whether she can continue to live independently. Sam said she was told she can’t have an advocate and it's difficult as she is being told she should go back into supported living. We thought about how Sam can be supported to manage the situation. A 1-1 conversation was suggested. Ray spoke about a situation in his flat where he’s had a leak for a couple of months. Communications have been difficult and very disjointed. It has been very hard and upsetting. Kweku spoke about his local council making decisions about the self advocacy group but not being told about them until 6 months after. He said members of WFPF were not trusted to be told – they said it was about confidentiality. 5 Information share • Accessible Legal Information project: This project is looking to recruit 10 people with learning difficulties to attend 6 sessions (£25 per session). Sessions will start in June 2023. • Free Our People Campaign are having early conversations with a legal firm and will be looking to work with local self advocacy organisations. • The Draft Mental Health Bill has been published, but it is not in easy read. Simone is working with other groups to write a letter. Blogs by Chris • • Next meeting: Wednesday 8th March 2023 12:30pm - 2:30pm https://us06web.zoom.us/j/97471173675C https://www.aplecollective.com/2023/01/what- exclusion-really-means-chris-burns/ https://www.aplecollective.com/2022/11/travelling- to-london-for-appg-on-poverty/ Action to follow up Action • Invite suggested guests 6 Chris’s artwork 7