SURVIVOR HISTORY NEWSLETTER

People with learning disabilities – COVID-19 Support and Action Group

Wednesday 3rd February 2022

Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675

1. Present

Andrew Charles Ray Peter

Apologies:

Kurinder Geraldine Russell Kieran

Gary

Jenny Firielle Olcay Chris

Kweku

Samantha Darren Simone Phil

Sarah

2. Introductions
We reminded ourselves of the Ground rules.

Everyone needs to have the chance to speak equally, and speak one person at a time.

Ian McCreath is joining the meeting at 1:30pm.

1

We then all shared how we were feeling.

Andrew: fine. I was at a parliamentary meeting talking about apprenticeships from 16 years. There’s a report including ER being done

Chris: I was at work at 6>10 this morning. I’ve done yoga and been in the sea! Last week I was at a meeting looking at benefits system and how it affects disabled people run by Ellen Clifford. I watched As We See it on Amazon Prime... 2 actors and most production staff are autistic. It’s about 3 young adults talking about relationships and their fears etc. It’s really good.

Kieran: I joined the Green Party and have applied for their role as spokesperson on disability. Good luck Kieran! Great news!!

Ray: Last week I was going to see Christine but where she lives the staff were worried about Covid so I suggested another date....hopefully we’ll meet after Valentine’s. I saw a couple of really out of order things on Facebook about Black Lives matter and am trying to make a complaint. I have to flag it and report it if I see anything. It’s against the law to post racist things.

Russell: I’m good, just had another meeting with Jenny. I’m doing ok...carry on working. We’re meeting about everything. I’m going to Blackpool for a 1 day meeting and a dinner. It’s a planning meeting NW training and development team planning meeting and gala dinner.

2

Jenny: I’m feeling ok. Been busy with easy read work and we’ve just had a productive meeting with Speak Up Be Heard

Peter: I’m ok. Following all the ‘hoo ha’ in the Houses of parliament. Lots of heckling going on.

Firielle: I’m fine. Been busy and getting ready for my drama on Tuesdays and Thursdays. I’m a student studying to be an actor. I’ve been filming a professional thing for children and it’ll be on Facebook.

Charles: So good this week. I am at last feeling the team are willing to listen to mum about my needs. My support has left and now have had two new ladies start so I am trying to remain positive.

Phil: I’m good trying to relax my shoulders from stress! It’s been very windy here.

Olcay: It’s been up and down for me. A couple of days ago I heard that one of my friends is in hospital with Covid and another friend’s has Covid too. This Friday coming Victim Support people and fire safety people are coming on Monday so everything has got on top of me. Last night I cried but I’m ok now. I just feel overwhelmed.

Sam: I’m ok. Last couple of sessions of physio...last one next week. It’s helped a bit but not as much as I wanted it too. They’re going to see if they can get another type of brace for me because it keeps coming out of its socket.

3

Simone: Pleased lockdown is ending. There’s a big Human Rights Act review taking place and there’s no easy read. Can we write a letter about this? Tuesday March 8th is the Liverpool hearing about Heidi. This court case is Heidi asking permission to go to the Court of Appeal from the judges. If people can come that would be good. We are hoping to go into the courtroom with Heidi so that the judges see that Disabled people are also interested in this case. It’ll start at 9/9.30 am

Surinder: I feel that in our country we don’t have any rights so I’m wondering about a campaign on this. Can we make a petition?

Andrew: We need to do a lot of work to let people with learning disabilities to know their rights. Getting ER information to help people make decisions is hard to come by. There’s a mental capacity act review so the Covid group might want a conversation about that.

Rosie and Sophie, lawyer and professor have offered to come to this group and support to go through reviews so people can comment.

We all agreed that this was a good idea. If we have complicated questions they can help us.

4

Guest speaker: Ian McCreath

Head of Think Local Act Personal (TLAP)

Ian introduced himself and told us about TLAP. TLAP is a partnership. It’s about 12 years old and was set up when government policy was looking at more care and control leading to the Care Act. It’s a partnership and a collaborative co-produced space. There’s a very strong lived experience space in TLAP along with a strong policy team to make personalisation happen and help people understand about the independent living movement. Austerity and cuts and lack of change are what TLAP has focused on. TLAP isn’t a campaigning organisation because it’s funded by the Department of Health and Social Care.

5

TLAP is always looking for opportunities to bring people together to make changes for more choice and control. TLAP is trying to influence government’s new Health and Care policy so that independent living is at its heart. We’re planning to be much more outward looking and bring more people together. Once a month different people with lived experience meet with the Care Minister Gillian through TLAP. I’d like other groups like this to be involved. The National Co-production Advisory Group sits in TLAP. They help us shape our policies and our work plan. You can watch a video about the National Co-production Advisory Group here https://youtu.be/GgEXF-085f4 TLAP is hosted by SCIE

6

Question 1 - How can we work together in partnership with TLAP to raise the voice of people with learning difficulties?
	Ian: in lots of ways. We used to meet as a big partnership but this stopped during Covid. We’re hoping to move to in-person meetings and can let you know when we’re having meetings and events that are coming up. Through the year there will be opportunities for wider group to be involved. If we’re working directly with HSC and CQC we want to make sure a diverse group of people is involved
Question 2 - How does TLAP connect to people who want to highlight good and bad practise...we want to do this and get funding for it?
	Ian: We are still looking at our next phase of work, which is to link policy to experience. Yes, I want to work with people who are passionate about change. Every year we work out our plan and areas of work, so we can come and talk to you and see how you can be involved in our work.

7

	Co-productio needs to be at the heart of how policy is developed. Self-directed support....needs to be rooted in giving people genuine choice and control Developing local small providers and commissioners to be braver to take risks and to work with local people. Happy to come back and share the discussion as we firm up our plans
Question 3 - What makes TLAP unique?
	The Making It Real values hold us together. Taking the principles of personalisation and making them happen. We’re not speaking to a particular model or representing a particular service so we have no vested interest other than to make personalisation happen. We connect people who draw on care and support to policy people at a very senior level. We can work flexibly with different people.

8

	We want to build on our partnership work particularly with smaller groups, not just big organisations like CQC and ADASS etc. Its challenging because systems have lots of challenges around money etc. that can dominate we make sure the lives that people live aren’t forgotten.
Question4 - Where do TLAP and the National Co-production Advisory Group get their funding from?
	Ian: In 2010 New Labour decided needed it wanted to know about people’s life experiences. This work was funded by government and continues to be funded today. It is reviewed every year but it doesn’t threaten TLAP as we want to get funding from other places. We can also do different work in partnership e.g. CQC. Everyone involved with TLAP gets paid for the work they do.

We didn’t have time to answer the following questions.

9

forward, how can we influence these plans?

 Question 6 - What’s your interpretation of the social model of disability?

 Question 7 - What does TLAP do for Black people and people from ethnic minority communities?

 Question 5 - Are you developing plans for going

Olcay also asked if another question could be added - How can you get onto the Board and involved with TLAP? This will be our first question next time?

Next meeting: Wednesday 10th February 2022 12:30pm – 2:30pm

https://us06web.zoom.us/j/97471173675

Chris’s Art Work

10