PPlog

noreply@blogger.com (PPLOG) — Thu, 23 Mar 2023 15:49:00 +0000

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 Ray Olcay Russell Phil Sarah 2. Apologies: Jenny Firielle Chris Peter Vicky Andrew welcomed everyone to the meeting. Our last meeting was 8th February. 3. Check-in Andrew asked how everyone was feeling. Everyone shared how they were feeling and their news. 1 Firielle: told us about her acting work. She finished her tour with the play Milk and is now doing a performance with Dark Horse. They are currently touring. Russell: said he had just been to a face-to-face speaking up meeting, which was really good. He also told us that Joanne won the Derek Russell Award for Outstanding Leadership at the North West Self |Advocate’s conference. Peter: said he has been well. He told us about some of the jokes and play on words that he works on. He shared some that he had worked on earlier. Ray: said he has had appointments, but all is ok. He asked Firielle about her acting and then talked about the film with the actor James Martin who has Down’s syndrome. We then spoke about George Webster who is a presenter who has Down’s syndrome. Philipa: said she was ok and was trying to stay warm in the cold weather. Sarah: said she was ok but hasn’t been out of the house since Sunday. She did go for a long walk in some gardens at the weekend though. Olcay: told us that she is looking forward to be a God Mother to her nephew at the weekend. She will be reading a poem at the Naming ceremony. Andrew said he’s feeling a bit rough. He hopes he doesn’t completely lose his voice as he is supporting 2 Olcay at the ceremony to read the poem. Chris: joined us after work. His day started at 6:30am. He said he is glad to be back at work. He also got his car fixed so travelling was easier. He has been busy doing some at work for different projects. Chris showed us an example of a piece of his art he has just completed. Andrew asked Chris if he has considered having an exhibition. Chris said he is looking into it. Chris shared another shocking story of neglect that had been in the news. Vicky: said she was at the North East regional event last week running Zumba sessions. Peter read a poem out before the break... In times gone by you made us smile, To boldly go the extra mile, Seasons came without much bliss, To see your face, we’ll sorely miss. A new dawn breaks the birds do sing, To think of you is a wonderful thing, As hills and mountains filled with heather, Our memories of you will last forever. This poem is aimed at those who have lost a loved one. International Women’s Day was also acknowledged 3 Peter played some music in the break. 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. 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: Early deaths for people with learning difficulties Topic 8: Homelessness and inclusive communication Topic 9: Bills, banks and inclusive communication. Topic 10: Informed and supportive decision-making and inclusive communication. 4 This week’s topic is Topic 2: Independent Living and inclusive communication. What does independent living mean to you, and what would inclusive communication? Vicky: need good communication for everything we do around independent living. It’s not just about verbal communication. Olcay: said there are different ways to communicate, like communication books so it helps you remember things. It is very frustrating when people don’t listen to us. Peter: said he uses his hands and gestures a lot when communicating. Vicky: said knows how frustrating it is when people are not listening to you. This is the reason why we need to get the message out about people listening to us. As I like to say listen with your eyes as well as your ears. Peter: said it is really upsetting when people don’t listen, especially people in authority. Chris: Independent living is about being able to go to work tomorrow, the reality is the welfare system as it stands doesn’t allow you live independently, certainly with dignity it doesn’t. Chris said he’s writing a blog about care for the APLE Collective this week and one of the points raised is 5 people with care packages can be more expensive than the individual’s personal income. A support worker is useless if someone’s fridge is empty. It shouldn’t be the case that people with disabilities are expected to live in care homes. “I work and drive, I do not belong in a care home”. Having a job helped me stay in my own home. Firielle: spoke about living in an institution in Woking. She didn’t like it as it felt like staff were controlling her life. She had to follow their rules. I also got bullied and had no freedom. She also had ECT (Electroconvulsive therapy). I had to stand up for myself, speak out and I got myself out of there. My parents listened to me and helped me. We then moved to Yorkshire. Electroconvulsive therapy, or ECT for short, is a treatment that involves sending an electric current through your brain, causing a brief surge of electrical activity within your brain (also known as a seizure). The aim of the treatment is to relieve the symptoms of some mental health problems. Chris: asked, what about those with no family around them? They are at the mercy of a care system that is inhuman. Vicky: said this is the main reason why there needs to be some change to the care system. We cannot allow this to happen. My worry also is who else is going through this but doesn't have family as back up as Chris 6 said or have the confidence to speak up like Firielle did? Chris: spoke about the environment in the care home where his mum is and the housing crisis that means it is difficult for people to find places to live in the community. The system’s broken! Attitudes that people with disabilities shouldn’t live in communities or live beside each other should be challenged. Andrew: asked what action we can take to raise these issues and bring people together around ‘independent living’. We read a message from Charles To all the wonderful people at the advocacy group I have so enjoyed being with you all and learning about the difficulties we have just because we have some sort of difficulty making sense of this world. Then society seems to ignore our rights and then we have to keep fighting not to be lost to oblivion. I have enjoyed making friends with you and would hope that we could all meet in person one day. I hope to have another day doing crafts so I will not be able to meet anymore. I have heard that I may have the opportunity to learn glassmaking, candle making and working with wood. So I am sure you will understand. 7 Thank you so much for respecting me, I did cherish that. I make really great strides knowing what I gained from the group. We discussed future meeting dates. It was agreed that we would now start meeting monthly. Action • Invite suggested guests • Andrew to reply to Charles on behalf of the group • Agree future dates Next meeting: Wednesday 22nd March 2023 12:30pm - 2:30pm https://us06web.zoom.us/j/97471173675C Monthly meetings Wednesday 19th April 2023 Wednesday 31st May 2023 Wednesday 28th June 2023 Wednesday 26th July 2023 Wednesday 23rd August 2023 Wednesday 20th September 2023 Wednesday 18th October 2023 Wednesday 29th November 2023 8 Chris’s artwork 9 10

noreply@blogger.com (PPLOG) — Tue, 07 Mar 2023 15:57:00 +0000

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

noreply@blogger.com (PPLOG) — Wed, 08 Feb 2023 16:25:00 +0000

Self Advocate’s Support and Action Group Wednesday 11 January 2023 Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675 1. Present Andrew Charles Simone Phil 2. Apologies: Ray Jenny Ray Kweku Vicky Geraldine Joanne Russell Samantha Olcay Chris Kieran Sarah Andrew and Jenny welcomed everyone to the meeting of 2023. Our last meeting was 7th December. 3. Check-in Jenny asked how everyone was feeling. Everyone shared their news. 1 Andrew said he’s feeling much better after the flu. It’s been a busy week. Friday he was in Parliament for a Partnership Network meeting. Jenny said she’s feeling ok and has had lots of different things happening – it’s been an interesting time. Vicky said she’s feeling good as a few positive things have happened. In a good mood so there may be some jokes. Sam said she’s feeling alright. She had an appointment on Monday that the outcome has caused some mixed emotions. Charles said he is wondering when we could all meet up in person. I love having time with you because I don’t have many friends. I’m so happy when I have more of a normal life. He hasn’t had any heating this week. Phil said she visited London at the weekend and had lots of lovely food and drink. Since coming back she’s had problems with her electrics. Kweku said he’s been ok and saw a friend last Sunday on his birthday. He’s waiting for a meeting with Waltham Forest Council about the contract for Waltham Forest People First. Sarah said she feels rotten and is in bed with a Lemsip. 2 Olcay said she’s fine now after being ill with a nasty cold. Joanne said she’s been working and is travelling now. She’s rushing back home to get the boiler fixed. The training she delivered this morning went well and she’s booked her hotel in Blackpool for a Northwest conference. This is being run by Pathways Simone said she’s full of the joys of life. She’s been reading through the draft Mental Health Bill recommendations. She attended the Henry Smith event around advocacy. She raised concerns that the money they are offering for nationally co-ordinated advocacy is not enough. She also has boiler problems! 4. Discussion: Themes for 2023 Andrew and Jenny explained that at the last meeting we agreed to focus on the theme of ‘inclusive communication and independent living’. They want to decide what topics to focus on over the coming meetings. Andrew explained that inclusive communication was an important to support independent living so it was a good place to start. 3 Vicky said that a good example of important of information not being accessible is Wirral Council’s latest budget information. Vicky reminded people of what she said last week, ‘Information is knowledge and knowledge is power’. 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. 4 We agreed to have master classes on specific areas of a topic. For example: Joanne offered to run a session on eye care. Joanne also has lots of videos to share. Break We had a quick discussion about how often we meet. Everyone agreed to keep meeting fortnightly. Vicky suggested that we plan to discuss a topic over 2 weeks, but if we exhaust the topic in one meeting then we move on to the next. Simone said it’s important to think about how decisions are made. Sarah said that inclusive communication is essential for informed decision making. We emphasised that the over-arching theme is not just about Easy Read. Inclusive communication is important for all areas of our lives and being able to live independent. 5 Today is Holocaust Memorial Day 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. 6 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 • • 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 • Agree meeting dates for 2023 Next meeting: Wednesday 8th February 2023 12:30pm - 2:30pm https://us06web.zoom.us/j/97471173675C 7 Chris’s artwork 8 9

noreply@blogger.com (PPLOG) — Thu, 26 Jan 2023 16:07:00 +0000

Self Advocate’s Support and Action Group

Wednesday 11 January 2023

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

1. Present

Andrew Charles Simone Sarah

Jenny Ray Carinder

Vicky Dave Chris

Russell

Samantha Geraldine Phil

Kieran

2. Apologies: Olcay

	Andrew and Jenny welcomed everyone to the first meeting of 2023. Our last meeting was 7th December.
3. Check-in Andrew was facilitating and asked how everyone was feeling and how their holidays were. Everyone shared their news and said they were happy to see each other.

Charles said how happy he was to be meeting up again and shared some of the things that he had done over the holidays. There had been many changes with his team which does not help him to have the calm environment he needs.

Ray had a quiet Christmas. He bumped into Philipa in Sainsburys on Christmas Eve.

Vicky asked that people let her finish what she is saying before she finishes.

Simone said she is on the Disability Justice Fund panel and working hard on the Free Our People campaign.

Andrew and Phil had a productive meeting about the work People First are doing with self advocates in Nepal.

Jenny and Vicky had a good meeting on Direct Payments in the morning.

Sam was feeling good and was pleased to be back at work.

Carinder said he was feeling great and had just been helping his wife on radio. He also asked about producing a plain text version of the minutes.

Chris is waiting to hear if he will be involved in delivering the Oliver McGowen training. It will be a ‘casual contract’ on around £12-£15 per hour.

4. Discussion: Themes for 2023

Jenny said that the Patients Association had sent out a questionnaire about people’s experience of health care. Unfortunately, it was not accessible.

Jenny and Andrew thought it would be good to focus on inclusive communication and accessible information as a theme for our work for the next 6 months.

Andrew said it’s not just about easy read, it’s about how people are informed and given the opportunity to make informed decisions. This goes through everything and will help us address other issues.

Vicky said, ‘Information is knowledge and knowledge is power!’

Simone suggested having example letters and getting organisations to challenge poor practice.

The idea is to focus on a topic and organise some action around it. Then we can see if it has been effective.

The group voted and agreed that the focus of our work going forward will be Inclusive communication and independent living

The group started by working on a letter

Planning for the themes will happen at the next meeting.

Information share

Blogs by Chris

• •

Advocacy Plus training

Love, Sex and Relationships 13th January 2022 11am

Ace Anglia: Contact Dave dave@aceanglia.com https://www.aceanglia.com/category/stories-and- interviews/

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
• Agree meeting dates for 2023

Next meeting:

Wednesday 25th January 2023
12:30pm - 2:30pm https://us06web.zoom.us/j/97471173675C

Chris’s artwork

noreply@blogger.com (PPLOG) — Fri, 29 Jul 2022 15:28:00 +0000

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

Wednesday 20 July 2022

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

1. Present

Andrew Charles Vicky

Olcay Geraldine Kweku

Russell Sam Sarah

Lorena Simone

Ray Kieran

Philipa

2. Apologies:

Jenny Joanne Gary Firielle

Andrew and Russell welcomed everyone.

Olcay thanked everyone for the Get Well cards the group sent.

Everyone spoke about how they were coping in the heat.

Some people have found it difficult to sleep.

Feedback from Kieran and Vicky about the Heidi court case.

It’s unlikely there will be a decision until the end of summer.

There was no conclusion at the end of the day and there isn’t a date for the day of judgement.

An updated statement from the People First was published. https://peoplefirstltd.com/downright- discrimination/

3. Discussion: Preparation for visitor from National Lottery (Leaders with Lived Experience Programme)

Harriet is joining the group next week. She is a consultant working with the National Lottery. She would like to meet with people who have benefited from the Leaders with Lived Experience grant we received to run this group.

They would like to find out

more about you as leaders.

We thought it would be helpful to think about what has been good and what has been difficult.

 We were able to learn new ways of communicating online and become more confident using Zoom.
 We were able to meet other self advocates around the country who we wouldn’t have otherwise met.
 It’s been a good atmosphere and very supportive – the peer support has been really important during Covid-19.
 We have been able to practice and learn facilitation skills.
 The co-facilitation has worked well and we have had useful Planning Meetings.
 We’ve had lots of different discussions and debates.
 We have written statements about some of the issues we feel really strongly about, like closing ATUs.
 We have had guests come and speak about issues, like the Heidi court case and the Abortion Law.

 We ran the Oi, Out in Front event online.

 It was difficult for everyone to get online at first.
 Meeting online and from home is sometimes frustrating – it would be good to meet in person at times.
 Sometimes we feel we don’t have enough time to discuss things properly – everyone should have their say.

 The stronger self advocates can sometimes dominate the discussions.
 It would be good to have more capacity to follow up on our ideas and agreements and take more action.
 Having an annual ‘meet-up’ would be good.

4. Future meetings

Name of the group: Although Covid-19 is still with us, we’ve been talking about a lot of other things. Because of this we’ve thought about changing the name of the group. There were 2 suggestions:

1. The Sell Advocates’ Support and Action Group 2. The Self Advocates’ Support Network

Meetings from September onwards: We thought about meeting less often (monthly or twice a month) and also having an annual ‘in person’ meeting in May.

We had a vote and everyone voted for twice a month.

Members of Together All Are Able asked if we could avoid the first Wednesday of the month.

We agreed to keep meetings on a Wednesday.

Guests:

27.07.22: The National Lottery consultant from EPIC,

Harriet, will be coming to talk to talk to us about how the

Leaders with Lived Experience grant has helped us

continue to meet and discuss issues that are important

to us. She will attend 12:30pm – 1:30pm.

We will also invite Neil Crowther, James Sanderson, Ian

McCrieth and Alexis Quinn back to the group.

Information share

Together All Are Able have had training to become

trainers for eye care from SightAbility.

Kieran said he has had a conversation with Simone

about getting the Disabled Peoples’ Direct Action Group

up and running again.

The sixth annual Learning from lives and deaths –

People with a learning disability and autistic people (LeDeR) report has been published by King’s College London 14th July, with an easy read version.

NHS England has also published the fourth annual LeDeR Action from Learning report and easy read version, which describes some of the work being undertaken across the country by the NHS to reduce health inequalities and premature mortality amongst people with a learning disability. There is also

a supporting resources document.

Next meeting:

Wednesday 27th July 2022 12:30pm - 2:30pm

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

Please note that we will be breaking for summer after our meeting on 27th July until 13th September.

We will meet twice a month, on the second and fourth Wednesday of the month. Below are the dates.

2022 dates

Wednesday Wednesday

Wednesday

13th September 2022 27th September 2022

12th October 2022 26th October 2022

9th November 2022 23rd November 2022

14th December 2022

We will then review if we want to continue ? meeting twice a month or reduce to
meeting monthly.

noreply@blogger.com (PPLOG) — Tue, 19 Jul 2022 15:18:00 +0000

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

Wednesday 13 July 2022

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

1. Present

Jenny Andrew Chris Sam

2. Apologies: Charles Vicky

Chris Simone

Olcay Darren

Geraldine Lorena Gary
Ray

Russell Sarah

Kieran Philipa Firielle Kweku

Jenny and Andrew welcomed everyone.

A special welcome was given to Olcay. She thanked everyone for the wishes and cards she received while she was unwell.

She is making a good recovery but is under pressure to sort out new arrangements for support.

We all shared what we had been up to and how we were. There were lots of comments about the hot weather. Some people liked it and some people were finding it difficult.

3. Discussion: Heidi Crowter court case

The original statement was updated based on discussions in the group and with invited guests over the last six months.

Our revised statement

We support and fight for equality for all, but particularly for people with learning difficulties, disabilities and autism. We want to have the same opportunities to life and living as everyone else.

In July 2021, People First (Self Advocacy) and the Covid-19 Support and Action Group offered its support to the #DownrightDiscrimination campaign and the High Court case, led by Heidi Crowter and others, calling for 'equality in the womb'.

The #DownrightDiscrimination campaign is about removing the clause in the Abortion Act that allows abortions to happen after 24 weeks of pregnancy based on disability. Disabled foetuses can be aborted up to full term.

Over the last year our understanding and discussions about this case have deepened. Many of us have been fighting for our freedom and our right to exist, but we

believe that we need further debate and open discussions that are led by disabled people.
We need to carefully consider how the rights that we are fighting for has an impact on the rights of others if such a ruling was to be successful.

We are also concerned about some of the supporters of the campaign and their intentions. We have questioned

if it is first and foremost about equality and discrimination against Disabled people, or is it also a platform for the 'anti-abortion' movement and restricting the rights of all women (including Disabled women)? We want to have the opportunity to ask these questions and be involved in the debates.

We support people with learning difficulties, disabilities, and autism to fight for their rights and lead their own campaigns, but recognise that we may not always be able to take an immediate or clear position on behalf of our members.

Our weekly Self Advocate's Support and Action Group are continuing to discuss this and other campaigns.

Our community continues to be discriminated against and are suffering unnecessarily every day.

Chris shared how frustrated he was with the amount of attention and press the Heidi court case was getting when there are a lot of other important and serious issues to be focusing on.

People are struggling with their benefits, e.g. Personal Independent Payments (PiP), the shortage of Learning Disability Nurses, the social care crisis and other issues such as access to suitable housing and shared ownership.

There was agreement and although we wanted to have further discussions about the issues this has raised (the rights of women, and the discriminatory elements within the current Abortion Law), we said that we would focus on some of these other issues that Chris raised.

4. Future meetings

There are some outstanding requests from visitors to attend.

National Lottery consultant EPIC, was offered a date to

come to hear about how the Leaders with Lived

Experience grant has helped us continue to meet and

discuss issues that are important to us.

27th July offered.

Neil Crowther and James to arrange dates in

September.

Information share

The sixth annual Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) report has been published by King’s College London 14th July, with an easy read version.

NHS England has also published our fourth annual LeDeR Action from Learning report and easy read version, which describes some of the work being undertaken across the country by the NHS to reduce health inequalities and premature mortality amongst people with a learning disability. There is also

a supporting resources document.

Next meeting:

Wednesday 20th July 2022 12:30pm - 2:30pm

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

Chris’s Artwork

noreply@blogger.com (PPLOG) — Fri, 01 Jul 2022 15:27:00 +0000

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

Wednesday 29 June 2022

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

1. Present

Charles Firielle Chris

Geraldine Ray Jenny

Russell Kweku Philipa

Vicky Olcay

Lorena Sam Sarah

Chris Gary

2. Apologies: Kieran Andrew

Charles and Lorena welcomed everyone.

Charles said a lot of people are unable to make today’s meeting so it’s a small group. He asked what everyone has been up to.

We all shared what we had been up to and how we were.

Chris’s artwork from last week.

Ray spoke about all of the things he has been doing, including going to the cinema to see Jurassic World.

Russell, Sam and Sarah have all had their hair done. Phil and Sarah have both had COVID.

Kweku had been to the Houses of Parliament to meet his MP.

Firielle spoke about her time in Palestine and the play she was performing in. She is also studying dancing.

Lorena said she had a lovely week. Some of her work has been in an exhibition using pictures instead of words in research.

Charles said he had been fine but shared some personal worries about the future without his mum.

We agreed to have a session to talk about losing our parents.

Sarah suggested connecting with The Death Café

https://deathcafe.com/

They run discussion groups about death.

Their

objective is 'to

increase awareness of

death with a view to helping

people make the most of

their (finite) lives'.

3. Discussion: Human Rights

We started by reading some of the news

In England the laws are made by Parliament. In
USA the Supreme Court make the laws. In1973 there was a case called Roe versus Wade.

right. They have States can now women have the happens when

This gives the make abortions. It is States will do

The Supreme Court ruled that the rights of women to choose whether they have an abortion is protected.

Recently this has been reviewed by the Supreme Court and over-ruled that

decided that the USA decide whether
right to choose what they are pregnant.

States the ability to restrictions and ban expected that half the this.

Heidi Crowter’s case is arguing that no woman should be able to decide to have an abortion, based on disability, after 24 weeks. This is about ‘equality in the womb’ for disabled people.

Statistics are low for the number of abortions after 24 weeks; less than 1%. There are some conditions and situations that are very complicated and dangerous.

It’s very complicated and many people are worried that it is a start to restrict women’s rights.

Chris said that it should be about disability discrimination not restricting women’s rights to make decisions about their own bodies.

We also discussed how these decisions can take us back in time to ‘back street abortions,’ and higher risks for women.

There are very few people with Down Syndrome in Iceland. This is because nearly all pregnant women who have a test for Down Syndrome go on to have a termination.

Chris produced a powerful image about ‘allowing guns but banning abortions’.

He also shared a photo of his father who died 8 years ago.

Phil suggested we bring photos when we talk about our parents.

Next meeting:

Wednesday 6th July 2022 12:30pm - 2:30pm

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

Chris’s Artwork

noreply@blogger.com (PPLOG) — Tue, 28 Jun 2022 14:43:00 +0000

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

Wednesday 22 June 2022

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

1. Present

Jenny Ray Firielle

2. Apologies:

way)

Philippa Kieran Lorena

Vicky Simone Russell Chris Sam

Sarah, Andrew, Olcay, Jenny (part

Russel and Lorena welcomed everyone.

Everyone introduced themselves.

3. Meeting Summary

Due to the meeting being recorded (available on request from attendees) this is a summary rather than minutes taken.

We talked about Learning Disability Week.

Learning disability week is a week to raise awareness around different things that affect people with learning difficulties and are set themes each year.

The group said they hadn’t seen much out there about it, not much more than a social media campaign.
Some of the group said they are tired of there being many awareness weeks but what are they actually achieving or impacting on.

Some group members expressed they prefer Learning Disability Pride Week, which is led by Learning Disability England. This is a week where people can express what they are proud of.

Vicky spoke about her Zumba enterprise and that she does Zumba gold. She offered to come and deliver to the group. DATE AGREED 20th JULY

Some of the group spoke about Don O’Callagan who runs an international social group for people with disabilities. Don is five hours behind England in the USA but the group runs at different times. Vicky and Keiron have the details.

International Self Advocacy Group, Every Thursday evening 8pm https://us02web.zoom.us/j/85743056865

Lorena talked about People First Empower project opportunity for self-advocates to be a part of an expert group for easy read. Email lorena.empower@peoplefirstltd.com

Others talked about there easy read activity in their groups. Suggestion of all who work on easy read to get together.

Vicky and Kieron are going to Manchester to Social care futures. Social care futures are a movement to make social care better for the future. They hold regular gatherings and next weeks is called “More than just a provider” They will try and get feedback back to group members next week.

Chris spoke about Cornwall Council announcing a job scheme for [people with learning disabilities to get more people into employment. Not first time they have done this. Chris also took part in research project for save the children and they’ve done a report around poverty in disability. Chris a was also a part of a consultation about welfare. Links to these on his blog website.

Firielle spoke about her self-advocacy group in Wakefield and her work around stopping hate crime against people with learning disabilities and Black Lives Matter.

Ray spoke about his day yesterday in the community centre in Streatham with Sam telling them about the work of the advocacy plus work he is doing with People First.

Sam said a few people were interested and took business cards. Presentation was to other self- advocates at Lambeth forum about new project which is adding counselling and coaching.

Vicky shared on 4th July herself and other members of together are able are going to be trained to be eye care champions. This is teaching people how to look after their eyesight. Being led by see ability. This is done over two training sessions after which participants will be able to teach people how to look after their eyesight and be eye care aware.

People said in coming weeks they would like to discuss about Ukraine and Human Rights.

4. Any other business

Simone spoke about Heidi’s court case which is on 13th July. Follow the Reclaiming Our Futures Alliance web- link on how you can support Heidi if appropriate.

Heidi Court of Appeal Hearing – 13th July 2022 - (rofa.org.uk)

Meeting Ends

noreply@blogger.com (PPLOG) — Wed, 22 Jun 2022 15:43:00 +0000

Hello friends

I would like to update all of you about Heidi’s court case – I wrote about it in the last People 1^st Newsletter. People First (Self Advocacy) Newsletter - May 2022 (mailchi.mp)

The court hearing is taking place on 13^th July – We understand that Heidi has asked the court judges to speak up about disabled and non-disabled unborn babies equal right to life for a second time. Heidi got the chance to speak to the court judges on 8^th March.

We would love all of you to support Heidi. It be great if you can support. You can come to the court and support Heidi. If you cannot come to the court, you can send your messages of support. We will make sure all messages of support will be seen and heard by Heidi at the High court.

Please follow the Reclaiming Our Futures Alliance web-link on how you can support Heidi.

Heidi Court of Appeal Hearing – 13th July 2022 - (rofa.org.uk)

Please note that I will be on a beach holiday for two weeks in Turkey from 24^th June.

In the first place please contact my support worker, Sedley - simone.pers.ass@gmail.com

Please type in black ink.

Simone Aspis

Director

Changing Perspectives

www.simoneaspis.co.uk

noreply@blogger.com (PPLOG) — Tue, 21 Jun 2022 15:59:00 +0000

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

Wednesday 15 June 2022

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

1. Present

Jenny Sam Geraldine Simone Lorena Phil

Guest: Alexis Quinn

Charles Ray Sarah

Firielle Lynn

Vicky Russell Joanne

Peter Olcay

Apologies:

Andrew Gary Chris

Olcay Kieran Kweku

Jenny and Lorena welcomed everyone.

Everyone introduced themselves.

Jenny welcomed Alexis Quinn who was invited to talk about her experience in hospital and how she escaped the system.

	Alexis: I’m an autistic person and was detained in an inpatient setting for 3 and a half years - a total of 4 years against my will.
	I was teaching in a local school when my brother died. I also had a baby at the same time. I found it difficult to manage and asked for help.
	I went in to hospital a long way from home. I started to behave ‘challengingly’. In fact it was the services that were very challenging to me.
	When people don’t know what to do, they restrain you. This is when you’re held down and injected with medication.

	This happens all over the world. This happened everyday & sometimes a few times a day.
	I was also locked in a seclusion room. It’s called ‘long-term segregation’ when it’s for a few days.
	The worst thing about this was the way people treat you. Like you’re not worth anything. It makes you feel very lonely and depressed.
	I was in 12 different hospitals all around the country. This happens to lots of people with autism and learning disabilities. Often because they don’t know what to do with you.
	I was able to escape from the hospital with the help of a retired Doctor and a retired Head Teacher.

	They picked me up and took me to France where the Mental Health Act isn’t valid. I then went to Africa.
	I was then a lot better, surrounded by people I loved and treated with respect. I could make decisions about when to get up and when to eat.
	I worked for 5 years as a teacher before coming back to England. I now work for the Restraint Reduction charity. My job is to get health and education professionals to stop restraining people.
Questions and comments for Alexis Charles: Respect is so important Vicky: What was it like living in those other countries? Alexis: They’re much less intense. People are more connected to one another and value relationships more.

They’re not stuck on social media and running around. It’s not all in your face and bombarded with sensory input.

Ray: It sounds terrible and against your human rights. How do you feel now?

Alexis: I feel frustrated that Government isn’t listening or involving people with lived experience. I’m not angry with the people who did what they did to me. They’re working in a hard system with little training. Most people were trying, there were only a very few nasty people.

Sam: Did you feel very intimidated when people weren’t listening to you.

Alexis: I felt helpless and hopeless. I felt like I wanted to take my life in my own hands. I was just waiting to be restrained again and I didn’t know when it was going to end. I didn’t really know why I was being locked up.

Alexis wrote a book that tells her story in more detail

Unbroken: Learning to live beyond diagnosis

https://autisminjustice.org/Stories/alexis'%20story.html

Amazon link

Joanne: People’s voices aren’t getting heard in Inpatient units.

Alexis: I get so annoyed that everyone knows it’s not right and it’s not working.

Simone: I’m really interested about the cultures of other countries and the spiritual side. Also, do you think there’s ever a time when someone should be detained? If not what is the alternative?

Alexis: There are times in people’s lives when they’re very distressed and have the potential to harm themselves or others. There should be services in place to prevent this. At the moment there aren’t safe spaces to do this that allows us to connect with others.

If people can’t be supported in the community then there should be Crisis Houses in your community, which is a nice place to go to and is safe. Where we are happy to go and your family can visit.

What we know for autistic people when you’re stuck in the system it is likely to be for 6 years. Stuck in a place that’s inappropriate for them and makes them more depressed.

Nigeria, Tanzania, Kenya and then Egypt are all very difference but for me they all felt very tolerant. I felt very welcome and my colleagues were encouraging and understanding. It’s important to be able to create your own environment.

In the UK it’s difficult as things are so expensive and fragmented (broken). People don’t let you into their spaces easily – lots of closed spaces and environments.

I found in the other countries it was easier to be in other’s spaces.

Russell: I live in supported living and the staff are excellent. We talk to self advocacy groups in America.

Ray: How did you feel when you couldn’t do what you wanted to do?

Alexis: I was in a psychiatric hospital where you go when you have a mental illness. But autism and learning disability isn’t an illness.

I wouldn’t call it a hospital – where you go to get treatment. I’d call it a warehouse where you’re kept because they think you might hurt yourself or others.
I was asking for help for difficulties I had but they didn’t understand it and when I got into hospital it made me worse. I had responses that were seen as dangerous and risky. If they had provided the right support then none of that would have happened. I’m not a violent or aggressive person if people are reasonable.

Charles: I was violent. I hated the way I was treated as if I was a problem. I had to listen to the horrible things said about me. That made me even angrier so the importance of listening is vital, even if the method of communication is not believed by professionals.

No one seems to believe that I can regulate myself. My mum keeps up the fight so they should listen and give her a break.

Alexis: That’s what I was describing. People don’t listen or think about different forms of communication.

Geraldine shared some news. The solicitor worded it...‘I want someone to help me not blame me’.

Vicky: Listening to Alexis and Charles has confirmed that many professionals see us as ‘challenging’ and not for who we are, jumping to conclusions. It really makes me very angry. How’s it still happening in 2022?

Ray: It’s unacceptable. Society treats us like ‘stupid idiots’.

Simone: What is your view on the Mental Health Act and what needs to happen?

Alexis: I campaign to have autism and LD to be taken out of the Mental Health Act. In my naivety that there will be adequate support in the community. Until that’s the case we can’t take them out of the Act as many autistic people may end up in prison instead.

A study done showed that the more hospital beds shut the more PLD went to prison. People may also be diagnosed with a mental illness so they can go to hospital. This is called the Penrose Hypothesis https://mentalhealthcop.wordpress.com/2022/02/03/the- penrose-hypothesis/

Respect and listening and having the rights services in place are most important.

Simone: It’s a concern that our rights may be weakened by changes to mental health and mental capacity law. We also have to look at the Criminal Justice system and understand what falls under criminal acts and what are mitigating circumstances.

We all thanked Alexis for her time and agreed to keep in touch.

Other news

Everyone wanted to send their wishes to Olcay and Andrew. We agreed that people would send their messages via lorenna.empower@peoplefirstltd.com

Discussion: Current issues in the news

Refugees going to Rwandan and coming from Ukraine

We discussed the issues related to refugees at the moment. Some of the policies and situations were difficult to understand.

Definition: According to the UN Refugee Convention, the

definition of a refugee is someone who: ‘owing to a well-founded

fear of being persecuted for reasons of race, religion, nationality,

membership of a particular social group, or political opinion, is

outside the country of his nationality, and is unable to or, owing to

such fear, is unwilling to avail himself of the protection of that

country’ (Article 1, 1951 Convention Relating to the Status of

Refugees)

Did people want to invite and speak to the group?

It was felt that it would be good to get a better idea of what it’s like to be a refugee and being in that situation.

Voting

 Would you like someone who is a refugee? Yes
 Would you like to invite someone from a refugee

organisation to talk about the bigger picture? (E.g. Refugee Action) Yes

We also voted on whether we wanted to find out the experiences of disabilities via the following organisations:

 Inclusion Europe Yes
 Inclusion International Yes

We then finished the meeting by sharing how we were feeling.

It was a hot day!
Next meeting:

Wednesday 22nd June 2022 12:30pm - 2:30pm

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

noreply@blogger.com (PPLOG) — Wed, 15 Jun 2022 15:59:00 +0000

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

Wednesday 01 June 2022

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

1. Present

Andrew Geraldine Russell Lorena

Apologies:

Firielle

Sam Charles Ray Kieran Chris Kweku

Jenny
Simone
Olcay
Phil Sarah

Peter

Gary Vicky

Jenny and Andrew welcomed everyone.

Everyone introduced themselves.

Andrew and Jenny welcome everyone to the group

Jenny: We are going to spend 15 minutes talking about Learning Disability Week and Sarah will remind everyone about their statements

Learning Disability Week 20 – 26 June 2022.
We talked about the theme, which is Connecting Communities.

We agreed we would share information about who we are beyond our learning disability labels, what we do, what we’ve achieved, what makes us angry, what we achieved.

Sarah then read out the statements (see minutes 25th May)

We agreed on a hashtag # to use when we send out our statements on social media.
Hashtag is #SeeTheRealUs

Kieran, I tested the suggested hashtags for what they’re being used for. A lot were in use by other people for non-disability related stuff. It can take a few weeks for a new hashtag to take hold; the alternative is to jump onto someone else’s hashtag with the message we are trying to get out.

Other members of the group who hadn’t been at the previous meeting shared their statement.

Sam: I am a very sociable person. I work for a charity who speak up for people with ld., I also am trustee on another charity, but I have been with for over twenty five years, and I also am sociable things with other outside

Kweku: I am strong advocate, I work for people first I also go to other places as well for people with disabilities and I work on the fairground it’s good to be show people you are capable of doing things and also I attend united friends and we go to different places and we go on holiday sometimes abroad and sometimes England and we decide where we go

Charles: Yes, we may add more to it when given through but so far I am so much more than my autism I have the same rights to have the full life as the next person.

Sarah asked people to send photos of themselves, by WhatsApp or email, that can be used with the Tweets.

Andrew: Alexis Quinn coming on the 15th of June to talk about her experiences and questioning of being in an Assessment and Treatment Unit.

There were some questions suggested at a previous meeting.

We agreed:

Ask her to talk about her experience and how she got out of the ATU.
Follow up with any questions based on what she spoke about.
What are her views about the changes to the Mental Health Act and the Human Rights Act?

BREAK

Heidi Court Case

This is taking place Wednesday 13th July.

It was suggested that if people wanted to attend in person we could arrange a meeting of the Covid-19 group in London on the same day.

We also discussed revising the original statement to include some of the wider issues that we’ve heard about and we’re concerned about.

Women’s right to make decisions about our own bodies.
Far right and abortion groups ‘piggy backing’ the campaign.
The lack of inclusion of people with learning difficulties.

Action: Jenny to contact Manchester Coalition of Disabled People to talk about their position.

Simone: The court case is not focusing on the foetus now. It’s centring on the stereotyping of disabled people and the impact on people.

https://peoplefirstltd.com/downright-discrimination/

We support equality in the womb!

People First (Self Advocacy) and the Covid-19 Support and Action Group offers its support to the case going through the High Court on Wednesday 6th July.

#DownrightDiscrimination is about the screening of disabilities on grounds of equality and human rights. This is being led by Heidi Crowter and others.

Some of us have been fighting for our freedom. This court case is about fighting for our right to exist. Every person should have the same opportunities; there should not be any inequality of opportunity.

The UK Government signed up to the United Nations Convention on the Rights of Persons with Disabilities 12 years ago. One of the guiding principles is ‘Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’. Article 10 (Right to Life) is about every human being having the inherent right to life on an equal basis with others.

We want to have the same opportunities to life and living as everyone else.

People First (Self Advocacy)

The original statement

Kieran: My understanding this was never about abortion legislation.

Olcay: We also need to think about the women who cannot have children; it’s heart breaking. Women with

learning difficulties are told not to get pregnant, and if they do worry that their take child will be taken away.

Jenny: The Heidi court case is bigger than what we think it is and does link to what Olcay saying. A more fundamental issue is if people with learning disabilities are having their children taken off them. Isn’t this an issue to focus attention on rather than the abortion law?

Ray: I agree what Olcay said about women’s rights, at end of the day. It’s a human right.

Philipa: I know that up to now the mainstream women’s movement have not been inclusive of people with learning disabilities around these wider issues. There are some organisations that realise this and want to be more inclusive for people with learning disabilities. I have meeting to talk about these wider issues and there may be some funding for a group to meet and have space to discuss these issues. British Pregnancy Advisory Service and ARK UK – women’s one antenatal results and choice

Simone: They are organisations that campaign for people. I thought would be more women’s rights more generally.

Olcay and Jenny said they were interested.

Next meeting:

Wednesday 15th June 2022 12:30pm - 2:30pm

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

People First.

noreply@blogger.com (PPLOG) — Wed, 18 May 2022 15:44:00 +0000

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

Wednesday 11th May 2022

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

1. Present

Andrew Geraldine Russell Lorena

Apologies:

Sarah

Jenny Simone Olcay Phillipa

Sam Charles Ray Kieran Chris Kweku

Peter Gary

Jenny and Andrew welcomed everyone.

Everyone introduced themselves.

Prep for Alexis Quinn

Andrew – Introduced the topics that we need to work out the plans for Alexis Quinn’s visit and also need to talk about mental health

Jenny – Shared with he group two pieces to give concept. Piece 1 “This is Jim...” and “I live in a house or flat, you live in a setting...” (Open Learning)

The language we use matters.
We need to think about questions for Alexis Quinn.

Simone – Alexis Quinn fought hard to get out of the system as was locked up but escaped to Africa. She has now come back and is not section and works to national restraint reduction and is doing a lot of work around mental health and detainment.

Kerion – I hope she goes into detail of how she got out of the ATUF. Maybe we should wait and see what she says and then ask questions in context of her talk.

Jenny – we need to plan.

Andrew – In the queen’s speech there was about the changes to the mental health laws and the covid group did ATU statement. In light of the way the law is changing maybe questions as to how do we make sure people are supported, and with friends and family and living independently. All gelled together.

Kieran – If changes that are likely to happen now were

there then they would have prevented her being locked up.

Chris – Alexis did an article. As a teacher she’s articulate but how can someone when not so articulate or language is not that great get out.

Ray – shared personal experience.

Kweku – Shared experience. Section should be las thing that they do. Not first. Suggest you’re a bad person. No one should be sectioned especially when its for having a learning disability.

Ray – This week is mental health awareness week. BREAK

Phillipa – read from G that Charles has left the meeting so she will too.

Christopher – What has mental health got to do with my learning disability. I get fed up of people saying learning disability is mental health.

Phillipa - That fits into the programme.
Jenny – we have big things coming up. Would be good

to have a programme of conversations

Phillipa – Human rights changing to a bill and changes in mental health act and understanding that/ It would be good to get everyone’s understanding on a similar level

so then have a better understanding to consider action.

Andrew – the queens speech. The government are bringing an act of parliament to change the MH act. Don’t like UN convention and want a UK bill of rights. In all reports government have been taking away rights rather than improving so heading into a dangerous time. We need to have conversations about how organisations like ourselves and all user leg orgs need to find a way to come together. Protected characteristics rights are under threat. We are small organisations so only by coming together can we have a chance.

Keiron – is there a list of disabled user led organisations?

Phillipa – we just need the groups approval Simone – yes claiming our futures alliance has a list

Andrew – parliament going to go at speed they go at so it concerns me we wont keep up.

Ray – I agree
All – agree for Andrew and Jenny to organise these

conversations and discuss who to invite :

Keiron – that’s why I aske dif a list of organisations.

Simone – my view is Andrew is on committee of ROVA so I expect them to be having those conversations. We

could work with inclusion London
Chris – Any MP? Shadow Disability Minister? Ray – I think its carrying from Brexit

Keiron – Andrew suggested it affect all protected characteristics. Do people know what they are? Its about making it illegal to discriminate on account of age, disability, gender reassignment, marriage/civil partnership. Pregnancy and maternity, race religion or sex.

Simone – covers anyone who can be marginalised by society

Keiron – the government will argue
Simone – Andrew said about UN act, it’s the European

convention on human rights

Andrews – Sibet Lana (??) at Inclusion London is a possible person

Simone – Liberty. I think inclusion London are working with liberty.
Maybe a joint event with inclusion London and ROVA

Phillipa – What about someone for around the mental health act

Kieran – used to be a shadow minister for mental health – not sure if that now exists

Simone – can I ask if are looking strategically and focusing group on these topics so more focus

Andrew – Gary said people with learning difficulties need to get organised. Ask Gary what meant by that? Also need to recognise small organisations that need to come together for bigger good.

Phillipa - Also if anyone knows what is going on relevant to human rights and mental health stuff – let us know

Simone – yes good for focus and everyone up to speed. Good to focus on mental health and human rights

Andrew – social care futures and ROVA to come along Keiron – also current shadow minister for mental health

is Rozeem allan Kaam (??)

Andrew – 2020 UK parliament education learning difficulties. What is in the training, how does parliament work on these thing?

Simone – So maybe we have a conference targeted at mental health bill and human rights act and invite Alexis Quinn to be speaker. Newsletter that asks what others are doing related to this and starts joining people together.

Ray – Conference is brilliant with what people first have

been doing

Andrew – that’s why asked about Gary. The issue the support the self advocates would need to come together.

Kweku – All good ideas. Also need to think about learning disability week in June. What are we doing?

Phillipa - its 20-26 June. The theme this year is reconnecting with communities

Andrew so an action is a statement about the bills in the queens speech.

Meeting ends.

Action

Statement about the bills that are in the Queen’s speech.

Next meeting:

Wednesday 18th May 2022 12:30pm - 2:30pm

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

People First

noreply@blogger.com (PPLOG) — Wed, 20 Apr 2022 15:17:00 +0000

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

Wednesday 13th April 2022

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

1. Present

Andrew Sam Chris Sarah

Apologies:

Simone Peter Geraldine

Jenny Russell Vicky

Gary Charles

Kieran Ray Olcay Darren Joanne Phil

Jenny and Andrew welcomed everyone.

Everyone said how they were feeling and what they have been doing.

Information share

Sarah has submitted the response to the consultation

Human Rights Act Reform: A Modern Bill of Rights

The closing date is 19th April.
All the comments from our session with Rosie and Sophie were included and the guidance from the British Institute of Human Rights (BIHR) was used to help answer the questions. The consultation questions were really hard to understand.

Women’s Group

Phil asked if any of the women in the group would be interested in joining to talk about some of the issues around abortion that are being discussed at the moment.

Building the Right Support programme

Andrew met with Ben Higgins, the CEO of BILD on 12th April. Ben said that a small Advisory Group of Experts by Experience was being set up for the programme and each of the work streams were going to involve 20 invited organisations. The Terms of Reference are still to be agreed. People First has been invited to send representatives.

The group spoke about the intentions of the programme

and how it has not properly involved people right from the beginning.

Andrew will keep the group informed of any developments, but generally people felt it was repeating the same old mistakes.

Action

• Prepare for meeting with Fionn Crombie

• Dates to confirm: o Dennis Queen

o James Sanderson o Neil Crowther

Next meeting:

Wednesday 27th April 2022 12:30pm - 2:30pm

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

Please not there is no meeting on Wednesday 20th April 2022

Chris’s Art Work

People First

noreply@blogger.com (PPLOG) — Tue, 12 Apr 2022 15:18:00 +0000

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

Wednesday 6th April 2022

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

1. Present

Andrew Sam Kweku Phil

Apologies:

Russell Peter

Jenny Simone Darren Sarah

Gary

Kieran Olcay Chris

Ray Charles Geraldine

Andrew: Looking forward to a break over Easter.

Jenny: Feeling ok, busy with different things.

Sam: Alright and getting over hay fever.

Olcay: Have a cold and have had a seizure so feeling like crap.

Charles: Happy to be here. Really happy with my team. Also, good comments on Facebook.

Ray: Not too bad at all. Haven’t been keen to go out because of the weather. We did a webinar with Sam about our work with the SEOEP project. I’ll be taking a couple of weeks off over Easter and for my birthday to enjoy life.

Phil: Feeling good and excited to hear that Beverly Lewis House, a refuge for women with learning disabilities, is still running and has had over 200 women have stayed there. It was started by a group of women called Power House.

Simone: Ok, but trying to get my boiler fixed. Everything’s breaking down – got a lot to sort in the house. Hoping I’m meeting Sally Phillips

Kieran: Feeling good. Been having some laughs, some at my expense!

Kweku: Feeling really well. Been to a speaking up group called Busy People in Southampton

Darren: Fine.

Topic: How lockdown has affected campaigning

Covid-19 campaign work

Simone listed some of the campaigns during the pandemic:

Prioritising people for ‘life saving treatment’
Prioritising people for vaccinations
Do not resuscitate (DNR)
High death rates for people with learning

difficulties
Hospital visiting/support

from family and friends

Most of the campaigns were run by non-disabled people and larger organisations who were able to organise themselves quickly online.

Some involved going to court, writing letters, surveys, and petitions.

People with learning difficulties were not involved in a lot of these or came in at a later stage.

Simone spoke about ‘The Every Death Counts’ campaign. Unfortunately the website was not accessible – it was run by 4 non-disabled people. The experience was not easy and they wrote a statement about why they weren’t going to work with Simone.

Simone posed some questions:

Who is in control of the social media?
Who sets up the Crowd Funding campaigns?
Who has the media contacts?
Who sets up the networks?
Whose voices are being heard?

We need to ask what impact have we had.

We have been able to start in- person campaigning like Heidi’s court case.

Oi event
30 contributions
Chris Burns logo
Hybrid event
Media coverage
Heidi has written about

the Abortion Act –

UNCRPD evidence
Easy Read documents
Court of Appeal

permission
ROFA intervention

Simone then spoke about the emotional and personal impact:
Life styles and values

Sense of being in the world Ideas of independent living and inclusion
Being seen or hidden away Ability to change the world from our homes Developing different relationships online

Ray: Spoke about how he adapted to working from home

Simone: She felt people have become more inward looking and not engaging with wider issues.

Kweku: If you work from home all the time you do miss out what’s happening in the community.

Olcay: Some people have lost their confidence and worried about the numbers rising. Some people are still ending up in hospital. Some people are worried about dying.

Kieran: Online if you’re confident with the tech. Some people struggle to get on to Zoom or Teams. Some things just aren’t the same online. Some advocacy is difficult unless you’re face-to-face. Kieran added that it’s about weighing up the risks, which seem to be reducing.

Simone asked are we really making any change and having any influence?

We can learn from other campaigns but it has had a greater impact when in person.

Phil spoke about why some high profile people or MPs get involved in campaigns. Sometimes it may benefit or promote another cause that is important to them.

Sarah added that campaigns need the right support and resources such as:

An issue that is supported by more than a few people
Good co-ordination and administration
Strong and clear communications and messages
A mixture of methods - in-person and online

It’s also good to look for partners who share the same concerns or wishes.

Sam: People with learning disabilities need to have a voice in everything that is done.

Information share

UK Covid-19 Inquiry: consultation on draft terms of reference https://www.gov.uk/government/publications/uk-covid- 19-inquiry-draft-terms-of-reference/uk-covid-19-inquiry- draft-terms-of-reference-html

Government Guidance on testing published 29th March 2022 https://www.gov.uk/government/news/government-sets- out-next-steps-for-living-with-covid

Action

Email sent to Fionn Crombie (email received from Lynn Murray)
Still to contact:
o Alexis Quinn

o Dennis Queen
Confirm times for:

o James Sanderson o Neil Crowther

Next meeting:

Wednesday 13th April 2022 12:30pm - 2:30pm

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

Chris’s Art Work

People First

noreply@blogger.com (PPLOG) — Fri, 08 Apr 2022 15:13:00 +0000

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

Wednesday 30th March 2022

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

1. Present

Andrew Sam Russell

Jenny Simone Kweku

Kieran Olcay Geraldine

Ray Charles Sarah

Guest: James Sanderson

Apologies:

Gary Peter Phil

Russell: Reallygood,I’m now Covid-19 free and feeling much better.

Jenny: Feelingok,busywith different things.

Sam: Alright and getting on with things

Simone: Up and down. Been busy with work.

Charles: Very happy and having a good time. The team that is supporting me is great.

Geraldine: It’s been really good. Charles is telling me when he doesn’t need me to be around.

Olcay: Feeling good, doing more and just attended a meeting.

Ray: Said he’s not too bad and he’s been out and about in the good weather – although now it’s cold again. He asked who watched the concert for Ukraine.

Kweku: Been busy with VoiceAbility

Kieran: FeelingOkand optimistic about getting the 3 monthly injections back on track.

Sarah: Feeling ok and happy to see everyone.

Things to do:

Andrew and Jenny went through the topics that people said they had wanted to talkjabout.

There are also a number of dates that need to be confirmed for guest speakers.

These include:

Ian McCreath to come back and ask the remaining questions from our list.

James Sanderson to come back and spend more time answering our questions.

Neil Crowther to come back and talk about Social Care Futures

Rosie and Sophie to come to the group to talk about attending meeting with the Law Society.

	Other people suggested as guest include: Alexis Quin Fion Denis Queen 6th, 13th or 20th April were suggested for Rosie and Sophie Kieran will contact Alexis Andrew will contact Fion and Dennis. Russell suggested inviting James back. Jenny reminded people that Neil Crowther also offered to come back to talk about Social Care Futures.
	Topic for today Being safe and free testing. Jenny read through the guidance that came out the day before.

We discussed some of the areas that weren’t clear.

Andrew said he would ask questions in the NHS Learning Disability webinar later.

Questions:

 Willpeopleinpriority level category 6 get free testing?
 Will people in day centres get free testing?
 Willpeoplewhohave free prescription because of a health condition get free testing?
 Willpeopleonbenefits get free testing?
 If you are eligible where do you get them from?
 How much will it cost?

Simone said she doesn’t understand the testing mentality as you have to leave the house to get the tests.

Kweku said it should be free for everyone.

Government Guidance published 29th March 2022

https://www.gov.uk/government/news/government- sets-out-next-steps-for-living-with-covid

Simone:

 The Government has published the Special Educational Needs and Disabilities (SEND) Green Paper
 The Down Syndrome Bill may become an Act by Friday.
 Heidi’s case is going to the Court of Appeal

Chris:

 Received an email about the Comic Strip he has designed for a Hospital Passport for Children. It is now being coloured

Next meeting:

Wednesday 6th April 2022 12:30pm - 2:30pm

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

Chris’s Art Work

People first

noreply@blogger.com (PPLOG) — Fri, 01 Apr 2022 15:34:00 +0000

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

Wednesday 23rd March 2022

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

1. Present

Andrew Simone Chris

Guest: James Sanderson

Apologies:

Gary Peter Jenny Sarah

2. Guest speaker: James Sanderson

Kieran
Olcay
Kweku Phil

Ray Sam Vicky Joanne

Andrew welcomed James and explained why the group was set up and when.

Everyone introduced themselves.

James said it was a huge privilege to be here.

We started by asking if people know about Personalised Care?

2 people said they did.

We then asked if people understood what Shared Decision Making in Health was.

2 people said they did.

James: I’m National Director for Personalised Care for NHS, end of life care, wheelchair services, Chair of national academy for social prescribing and in the past CEO of the Independent Living Fund.

Personalised care is about giving people choice and control over the way care is planned and delivered. Giving people the skills to live lives well.

It is all about treating people as individuals and seeing the person behind the illness

Been rolling this out over last 2 and a half years.

2.8 million people are currently

benefitting with an estimated increase to 4 million over next couple of yrs.

Social prescribing is about connecting to community groups and being able to access care that’s more meaningful

This can be challenging for people with learning disabilities.

Joanne: asked about LGBT groups and trans groups.

James said it was important to reflect cultural identity, religion etc and making services that are tailored to the individual. A one size fits all approach doesn’t work

People with learning disabilities and shared decision making; we want to train clinicians to have better conversations with people.

40% of people don’t understand the information they are given.

We have techniques called Talk Back. We want people to be fully informed.

We need to get this right for people with learning disabilities too.

Ray: Last year I had a biopsy I had letters that weren’t in easy read. I felt I was treated like a bit of an idiot. How can people in hospital communicate better with us?

Joanne: I know a lot of people in ATU’s and they’re also getting left out...they can’t access services because they’re in an ATU

Vicky: 6 or 7 weeks ago I fell and broke my knee cap. The consultant offered a plaster caste which I didn’t want so I stayed in a splint. Last week he said its healed. This is a good example of personalised treatment and a shared decision... t worked for me

James: It comes down to training.... to being respectful and valuing people’s diversity and giving options and making sure options are very clear

ATU’s it’s a real challenge and

we need to support ppl to live in communities and reduce number of people in ATU’s

We have a long way to go with the personalised care agenda

We need to call it out and say when personalised care isn’t being provided as it’s the government agenda

Simone: What’s your relationship with the Transforming Care Programme?

Kweku: NHS staff do not always treat you with disrespect. I got messed about a lot and they blamed me.

James: Re Transforming Care Programme, there are 15,000 people and multiple programmes and it’s a programme that’s very important to bring personalised care in. I’ll talk to colleagues further about your points.

Kweku’s point about having a long way to go, it’s awful to hear about your experience...we have to accept we need to bend the

	way we deliver care to suit the people receiving that care if not we fail as a service. We’re all beautiful people with different skills, experience, brains, bodies and we need to understand this James was asked if he would be up for working with us on your priority areas in the future James: of course
Reflections on the session:
Some people felt James really listened and gave clear answers. Others felt he seemed a bit removed from the frontline and didn’t answer the question fully. It was suggested that next time he comes we have 2-3 questions.

Sharing news:
Olcay has started slimming world again and lost half a

pound
Ray went on an anti-racist march
Sam has been busy sorting out lots of things

Joanne has been busy with the new SeeAbility launch in Lancashire and has 20 opticians signed up. Also working with Pathways to get more women with learning disabilities to go for breast screening in Greater Manchester. Now having a week’s holiday.

Kieran missed his regular set of injections due to Covid. They should be every 3-4 months but hasn’t had them for over 2 years. GP has booked them for next Tuesday so he’s pleased about that.

Andrew has been busy with the Empower Manager interviews and the Nepal sessions. Also gardening and catching up with some movies.

Simone joined the protect with Disability Action Network (DAN) who presented a list of demands for better health and social care. She suggested inviting Alexis Quin from DAN.

Phil asked if anyone would like to speak to the Law Society on 7th July 10am, about why accessible information is important.

Andrew suggested inviting Rosie and Sophie to the group to talk about it before then.

Kieran said he would be interested.

Ray asked if anyone had seen the ‘When Alan met Barbara’ film. He said it was brilliant. https://www.bbc.co.uk/iplayer/episodes/m0015p4q/then -barbara-met-alan

Next meeting:

Wednesday 30th March 2022 12:30pm - 2:30pm

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

Chris’s Art Work

People First

noreply@blogger.com (PPLOG) — Tue, 22 Mar 2022 16:11:00 +0000

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

Wednesday 9th March 2022

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

1. Present

Andrew Jenny Firielle Sam Vicky Kweku

Apologies: Gary Phil

Raymond Olcay Simone

Peter

Lynn Chris Sarah

Vicky

2. Guest speaker: Neil Crowther

Andrew and Jenny welcomed Neil Crowther.

Neil started by saying how divisive and difficult conversations and positions about the Down Syndrome Bill have become.

The Bill came about through the National Down Syndrome policy group, set up in 2022, mainly by parents groups and existing campaign groups like Don't Screen Us Out and the Portsmouth Down Syndrome Association. A further group was established to gain the views of people with Down Syndrome about the wider work with the group.

A new All Party Parliamentary Group was then set up, which these groups and people support, so they have a strong influence.

The idea of the Bill happened by chance. MP Liam Fox had his name picked out of a ballot to put forward a Bill in Parliament. He chose the Down Syndrome Bill. So this was put forward without much discussion or consultation.

The Bill originally had bigger ambitions than it has now. The inspiration was the Autism Act, which requires the Government to produce a strategy then tell public bodies how to implement the strategy in guidance.

The Bill is now quite weak, as all it says is that public bodies should read guidance about how they should meet existing duties and that there should be a named person who is responsible for ensuring that public bodies are paying attention to this guidance (in relation to duties that already exist) on the new Integrated Care Boards.

The Bill has been through the House of Commons and will be going through the second reading in the Lords this week. There may be more questions asked.

For example why only people with Down Syndrome – what would be different about health and social care guidance for people with Down Syndrome?

It focuses on a person’s diagnosis and condition – from the Disability Rights Movement and Social Model of Disability the focus should be the individual and their needs. It’s weak, unnecessary (guidance could be produced without a Bill), it’s become divisive.

Some of the supporters of the Bill have their own campaigns, for example Heidi’s case in the High Court. Although they are separate they have merged – the same people support and organise both.

Christian evangelical groups and right wing groups have connected with the broader issues around the Bill. The UN Special Rapporteur has warned that Disability Rights Groups need to be careful not to end up in allegiance with groups that want to undermine women’s rights about choosing what to do about their bodies. There is a danger that people are using the Downs Syndrome Bill to attack women’s rights to abortion.

The attention around the Bill should not be about attacking women’s rights or taking rights away from women.

Some of the people behind the Bill do not necessarily have the interests of people with Down Syndrome at their heart.

There are a very small number of terminations that happen after 24 weeks, so it seems that the campaign is about abortion more broadly.

Heidi’s case has gone to the Court of Appeal. It won’t be determined on the basis of discrimination but causes stigma and prejudice towards people with Down Syndrome.

The definition of disability in the Equality Act is deficit based – having an impairment of health condition that means you can’t perform day to day activities. To receive support you have to demonstrate the things you can’t do not what you can do. It’s everywhere in our society.

We hope that the Lords will pose questions such as, how will the guidance be co-produced with people with Down Syndrome – they weren’t involved in the writing of the Bill.

We need to be clear that we do not want to undermine women’s rights as a result of campaigning

for the rights of people with Down Syndrome.

We also need to understand why it’s needed.

If it becomes law then the Government will need to produce guidance. At that point we need to make sure people with Down Syndrome are involved.

It’s looked like people have been involved but it’s been theatre.

Are we making one disability more important than others?

The Autism Bill hasn’t really improved things that much for people with autism.

People with different disabilities or conditions will face different barriers. When we’ve promoted the rights of disabled people we need to acknowledge that we’ve actually forgotten lots of people – for example people with learning disabilities weren’t well represented in disability campaigning.

Final comments:

In the case of the Autism Act, many people were struggling to get a diagnosis so they couldn’t access support. There doesn’t seem to be a case to justify a separate law for people with Down Syndrome.

Do councils need extra health and social care guidance about the needs of people with Down Syndrome (maybe education?).

The Bill doesn’t seem to be well thought through and hasn’t come from people with Down Syndrome – it puts their condition right up front as their primary need; a backward step

Does this mean we need to have a Bill on every single issue?

Liam Fox said the reason for the Bill is that people are living longer and need more support – this is about the lack of provision and support not specifically about Down Syndrome but general health and social care problems and underfunding. The arguments for the Bill are very weak – but it has given some people a number of photo opportunities!

The Government has said this does not give people any additional rights or preferential treatment – so why does this need to be in law.

There’s talk that the guidance may include other people but this is unclear.

James Sanderson is our guest on 21st March.

James Sanderson is the Director

of Personalised Care at NHS

England and NHS Improvement

Next meeting:

Wednesday 23rd March 2022 12:30pm - 2:30pm

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

Chris’s Art Work

People First

noreply@blogger.com (PPLOG) — Fri, 18 Mar 2022 16:18:00 +0000

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

Wednesday 9th March 2022

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

1. Present

Andrew Jenny Firielle Sam Chris Geraldine

Apologies: Gary
Phil Simone

2. Introductions

Raymond Charles Kweku

Kieran Olcay Sarah

Vicky

Peter

Andrew and Jenny welcomed everyone to the group and then Jenny asked everyone how they were feeling.

Andrew: It’s been a busy week interviewing for the Empower Manager and joining the British Institute of Human Rights in challenging the Ministry of Justice

about the lack of accessible information about the Human Rights Act Reform consultation.

Jenny: I’m OK, just come from a Wirral Evolutions Speak Up Be Heard Group meeting – although they won’t be Wirral Evolutions in 6 months as Wirral Council are taking day services back in-house.

Charles: I’ve had a good week, and so happy about Alison being the leader of the team. She has lots of ideas for my care and promise for a better future. We’ve had a draft letter written by the solicitor to send to the CCG, which discusses the unlawfulness of what the CCG has said and done and not providing a package. I’m so pleased for sure!

Firielle: I’m good. It’s very cold up north. I’ve been busy with my family and have my God Son’s birthday next week. I’m going to Palestine for my acting 22nd March and will be back in September.

Ray: I’m not too bad, I’ve been doing a bit of cleaning. Looking forward to going to see my girlfriend Christine this Friday after not being able to go up when we had storm Eunice. We’ll being going to into the office next week, so it’ll be good to see everyone face to face. I’ll also be looking out for protests against the war in town around Trafalgar Square or Whitehall.

Kweku: I’ve been very well. I’ve been to a lot of meetings, and we’ve started to make connections with other ‘speaking up’ groups around the country. Also, good to catch up with you guys as well.

Olcay: I’m ok and trying to get back to normal. We went for a walk at the weekend and went to a coffee shop. Not rushing into it, just taking it step by step.

Samantha: I’m feeling alright, getting there. Taking things slowly and waiting to have an appointment for an assessment on my knee. It’s very painful, it’s been damaged from falls.

Kieran: I’m ok and just had a productive meeting at ‘Speak Up Be Heard’. Some other good news - Heidi has been given permission to take her case to the Court of Appeal.

Chris: Been working, fixed my toilet seat, had a hair cut and went to Comicon last week. I received a letter today to say I didn’t have an advocate anymore and my case was closed.

3. Discussion: Firielle’s topic – Disability LGBTQ+

Firielle spoke about the ‘Speak Up Go Out’ group in Wakefield that is campaigning against hate crime towards people from the LGBTQ+ community.

The group is for adults over 18. We make campaigning posters and leaflets, run social activities, have art sessions and have discussions.

Oljay asked how Firielle found out about the group. Firielle said she started the group with other people that she met at an event at Wakefield Town Hall. It’s run by the members.

I went to the Rainbow Pub in Wakefield and met people who arrange LGBTQ+ meetings and demonstrations. They campaign for LGBTQ+ to be treated equally.

We want to raise awareness across Wakefield and help encourage everyone to look out for hate crime – everyone should feel safe.

People should not be treated differently just because they’re lesbian or gay.

Ray asked if Firielle is looking at all hate crime.

Firielle said yes it’s for everyone in Wakefield to be safe, but they looking specifically at people who have learning disabilities from the LGBTQ+ community – but we want to be inclusive of everyone.

Kweku asked if the crime rate was high in Wakefield.
Firielle yes and she is arranging meetings with different people, including the police.

Leaflets will be put around the town to get the message out.

Kweku asked if Wakefield had the ‘Safe Place’ scheme https://www.safeplaces.org.uk/

Firielle said yes, and explained how it works – you can go into shops or public buildings to speak with someone who can contact the police or a family member or friend if you are a vistim of hate crime.

Kieran mentioned the ‘Safety in Town’ scheme and Sam spoke about a similar scheme in Hammersmith.

Olcay asked if the group was getting paid for the work they do. Firielle said yes.

Charles said he was impressed with the support Firielle was providing.

The group also shared some ideas with Firielle.

Contact the local press
Find out who the Council

Safe Guarding Lead/Officer

is
Work with the police
Include everyone

Sam said people have to know about it – they need to feel safe.

Neil Crowther is attending the next meeting to talk about the Down Syndrome Bill.

Jenny explained that Neil has raised a concern about how many of the MPs supporting the Down Syndrome Bill are anti- abortionists.

He has ben involved in the Disability Rights Commission, the Equality and Human Rights Commission, was active around Valuing People and more recently in Social Care Futures.

Jenny asked people what they would like to ask Neil.

Kieran said the motivation of MPs supporting the Bill and the Heidi court case – it should not become about anti-abortion.

Question: Can you tell us more about why you think anti- abortionists are supporting the Down Syndrome Bill

Chris said there are many other syndromes – the Down Syndrome Bill is saying one syndrome is more ‘important’ or needs ‘more protection’ than the other.

Question: Do you think it is helpful or unhelpful to have separate Acts for different disabilities – what has the Autism Bill done for Autistic people?

Why will the Down Syndrome Bill work, when the Autism Bill hasn’t. We have one Act for all disabilities – the Equality Act. Bills coming in for different disabilities is divisive – we need something stronger for everyone.

Question: Do you think that the Down Syndrome Bill will be

divisive?

Question: Has the main push for the Bill ben from parents?

Andrew said it would be good to think about how we might be able to work with Neil going forward.

We then discussed how we want to treat the visitors.

We agreed that everyone’s opinion is important.

We must make sure we give visitors enough time to speak, but we also have time to ask our questions.

If we feel anyone is being disrespectful or not treating the visitors well we must speak up.

Next meeting:

Wednesday 16th March 2022 12:30pm - 2:30pm

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

Chris’s Art Work

People First

noreply@blogger.com (PPLOG) — Wed, 02 Mar 2022 16:09:00 +0000

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

Wednesday 23rd February 2022

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

1. Present

Andrew Firielle Chris Sarah

Jenny Simone Kweku

Raymond Olcay Sam

Peter Charles

Russell Kieran Darren

Phil Geraldine

Guests: Rosie and Sophie Apologies: Gary

Vicky

2. Introductions

Everyone introduced themselves. We then we welcomed Sophie O’Connell and Rosie Harding.

3. Human Rights Act Reform consultation

	Rosie spoke about the Government’s plans to get rid of the Human Rights Act and replace it with a British Bill of Rights as it’s too tied with the European Convention of Human Rights. The Government asked for an independent review to come up with reasons for a reform. It said there didn’t need to be a review. It was published on the same day as the consultation was launched.
	Sometimes there is confusion about the European Convention of Human Rights and leaving the European Union.
	The Human Rights Act has had some bad press over the years. This is usually to do with people in prison, terrorists, and immigration.

	The press has highlighted these cases and helped to give the Human Rights Act a bad name.
	Rosie suggested making the most of stories we can tell about how it has made our lives better.
	Lots of the questions are technical and legal, and unnecessary (and deliberately) complicated.
	Sophie said that the British Institute of Human Rights (BIHR) has done a video and has some templates. Question 29 is the most important one to answer.
	Rosie said it’s not very well written, the claims that they make about what is wrong about the Act is incorrect. Dominic Raab is

	the Minister for Justice. David Cameron spoke about getting rid of the Act in 2006. We need to give them evidence to say otherwise.
	Some of the main points include: They want to restrict compensation depending on previous behaviour that may not be ‘good enough’ . There is no mention of disability in the consultation questions. They’re not planning to get rid of the rights but make it harder to claim those rights.
	Question: Section 3 At the moment the Human Rights Act says the UK courts have to interpret our laws in line with how the Court in Strasbourg interprets them. They want to get rid of section 3 – the interpretive duty. The

government want to delete it so it falls back on how UK courts interpret law – how the ‘ordinary person’ understands it, or what they thought Parliament intended, or other court cases.

This could mean a bigger gap between what our courts say and what the ECHR. There doesn’t seem to be any evidence that this is a problem.

Question 2: Declarations of incapability.
If a court can’t interpret the Human Rights Act that’s in-law with the Convention rights. Section 4 says this can be triggered. The Government proposes that they increase declarations of incapacity to secondary legislation (statutory instruments - regulations that aren’t made by Parliament) they are signed in to law by Ministers. If one of these is incompatible with Human

	Rights Act the courts can say that regulation is void and doesn’t apply. If there’s the proposed change then there isn’t an immediate impact on the law. Our legal system is split in to 3 different parts: 1. Executive - Government 2. Parliament - supreme 3. Judiciary - the courts
	Primary law In order to get an act of law there needs to be a:  Debate in House of Commons  House of Lords  Through committees – to look at the detail and have votes on it Parliament is supreme – this law cannot be changed or made void without going through this process. Secondary law Made by Ministers (the Executive) – no debates. Different status in law –

	this legislation can be declared void.
	We talked about how it affects us. For example, getting equal access to health care. Chris asked about compensation for those deemed fit.
	Rosie said that people with autism and learning disabilities end up in prison more than other people because of the way that law works in a discriminatory way. So if people in prison have their rights restricted this can have more of an impact of people with learning disabilities. Sam asked about appealing about medical treatment that is being refused because of capacity. Rosie explained that access to medical treatment isn’t always

covered by the Human Rights Act. Health Care falls under economic, social, and cultural rights. Human Rights act is civil and political rights.

Section 6 – this is about agencies performing a public service (hospitals, local authorities, courts etc.), have to act in a way that uphold your human rights. Want to change this to if they are performing within the law they are upholding our rights.

This section helps disabled people to get their rights acknowledged.

It would be good to provide your own examples.

Covid-19 restrictions had challenged this by imposing blanket restrictions, such as visiting people.

Ray’s question about information and having easy read. The

Government did not do this well during the pandemic and haven’t published easy read for this consultation.

Permission Stage

There’s a proposal to introduce a new Permissions Stage before people can bring Human Rights Act claims.

You already have to show that you’ve been significantly affected and it’s had an effect on you, so it doesn’t seem necessary to bring another stage in. It’s suggesting there are problems with the process (too many claims wasting time).

This will make it more difficult to bring challenges – this could put people off and make the process more expensive.

The alternative to go to the EU which isn’t a realistic

	option for many people. This is Q8 & Q9 is about the Permission Stage. It seems an entirely pointless proposal from the Government. Important questions that need to be raised and discussed may not make it to court if this is in place. For examples Heidi’s case is about Human Rights principles, but may not reach the threshold of ‘significant disadvantage’ if this stage is in place.
	Russell said it’s really hard to understand the questions. Sophie said that it is really difficult to understand – even with someone who has legal training. BIHR has really good guidance to help with responses.

Rosie agreed – it seems that the Government’s understanding is of the law is wrong.

Kieran said is seems it may be a tactic and a ploy to put people off of making claims and exercising their human rights.

Rosie said that by adding in a hurdle it will prevent people from bringing claims but it won’t stop the Human Rights abuses or infringement. If they apply for ‘permissions’ and exhaust their local remedies they only have the Strasbourg court will be more expensive.

Simone said it could be down to discretion of judges as to what is important or not. Also these points need to be included:

1. Taking out of taking into account European Convention of Human

Rights judgements –

must be retained.

UNCRPD should be

included and is stronger on rights for disabled people.
Courts should make it clear if there’s incompatibility – the law must reflect the rights of disabled people.

Andrew gave an example of reporting disability hate crime; do people have the trust and confidence to report it? Do the courts see and understand these barriers and why people may not report things?

Sophie said it is something to include as the overall effect of what the Government want to do, it could potentially send the message that human rights aren’t as important as they were. The penalties and fines won’t be as high so we take a step back rather than forwards.

	It’s hard to unpick all the proposed changes – people may see these as just little changes but don’t understand the big impacts they will have on people’s everyday lives. Rosie said the more experiences and examples you can give in the response the better.
	Andrew asked about how best we can put our response together. Rosie suggested not worrying about answering all the questions. For example: Don’t answer the technical questions like, how courts interpret the Bill of Rights, or the limits of what is a public authority – e.g. a commissioned service provider. Sometimes not clear in prison services.

Do talk about the Permissions Stage and how it will stop people who do have their human rights stamped on deal with it.

Do talk about other Conventions and other rights like the UNCRPD. They’re not proposing to add in any more rights or change the existing rights, but just ‘little things’ that will reduce access to the courts and to justice – this will make English law potentially further away from UNCRPD, which is a treaty that we ratified and should be accessible to people in England.

Do focus on the changes to what public authorities need to do as this is our interface to human rights. Infringing human rights is about public authorities infringing our rights.

Do talk about how the proposal to introduce ‘behaviour’ will affect

getting compensation if your rights have been breached. This may affect people with learning disabilities and autism.

Do add the fact that it isn’t a proper consultation – no easy read information and difficult questions. This would be Q 29 – also a place to say, keep your hands off our Human Rights, it works!

Ray shared an example of a negative experience of someone thinking he was drunk in a public place.

Rosie explained that the Human Rights Act is about the state and public authorities, not private individuals such as a shop and a person – it falls in to discrimination law, such as the Equalities Act.

Simone suggested finding someone who could put the Government on legal notice about not having

easy read available.

Kieran asked if we could get legal support from a solicitor/lawyer.

Simone suggested finding someone who could put the Government on legal notice about not having easy read available.

Action: Sarah will write up the main points for a response by 8th March.

Information share Research Project

Rosie is putting together a grant application to make suggestions around changing the Mental Capacity Law.

Everyone said they would like to hear more about it. Rosie reassured people that people would be employed to work on the project.

She will come back to the group when there is more news about it.

Legal Action: Louise Whitfield from Liberty may be the person to contact for support for Heidi’s court case. Simone will send her contact details. Simone said the legal team is looking at if they can put in a separate legal argument. The court is restricting access to how many people can attend the court case to 20 people. She has written to the court about this, but encouraged people to turn up if they can 8th March.

Next meeting:

Wednesday 2nd March 2022 - 12:30pm - 2:30pm

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

Chris’s Art Work

noreply@blogger.com (PPLOG) — Tue, 08 Feb 2022 16:11:00 +0000

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.

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.

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.

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.

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.

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

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.

	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.

	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.

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

People First

noreply@blogger.com (PPLOG) — Wed, 02 Feb 2022 16:21:00 +0000

Dear all

Here are the notes of last week’s meeting and the link for this week’s meeting.

Date: Wednesday 2^nd February 2022

Time: 12:30pm-2:30pm

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

Meeting ID: 974 7117 3675

Here are the questions we agreed to Ian McCreath when he attends the group:

[if !supportLists]· [endif]How can we work together in partnership with TLAP to raise the voice of people with learning difficulties?

[if !supportLists]· [endif]We want to work with you do you want to work with us what can we do together to raise our voices?

[if !supportLists]· [endif]What are you doing that’s different from everyone else?

[if !supportLists]· [endif]Where do TLAP and the National coproduction Advisory Group get their funding from?

[if !supportLists]· [endif]Are you developing plans for going forward, how can we influence these plans?

[if !supportLists]· [endif]What’s your interpretation of the social model of disability?

[if !supportLists]· [endif]What does TLAP do for Black people and people from ethnic minority communities?

Also, for your information is a link to the latest People First Newsletter https://mailchi.mp/c19a526d137d/people-first-self-advocacy-january-2022

Best wishes

Andrew

People First (Self Advocacy)

336 Brixton Road,

London.

SW9 7AA

Tel. 020 7274 5484

www.peoplefirstltd.com

noreply@blogger.com (PPLOG) — Mon, 24 Jan 2022 15:37:00 +0000

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

Wednesday 19th January 2022

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

1. Present

Firielle Kieran Charles Simone Phil

Apologies:

Andrew Ray Geraldine Chris Sarah

Gary

Jenny Samantha Vicky (& Dixy) Geraldine

Kweku

Joanne Peter Olja Russell

2. Introductions

Andrew welcomed everyone to the meeting. Jenny and Joanne asked everyone how they were feeling and if they had any other ideas about what they want the group to do or talk about.

Samantha: the approach of Doctors when you go to hospital. They don’t want to talk to you. It’s very annoying.

Joanne: the difficulties around having appointments online.

Chris: I sent a letter to the Devon and Cornwall Crime Commissioners about how we are treated like second class citizens. We need to keep raising this.

Charles: I want to tell MPs how we are supported in this group. It’s important for people to know that people who can’t talk must still have the right to join in with the rest of society.

Kieran: make time for Heidi’s court case when it comes time for the appeal. Also, talk realistically about whether we continue to meet by Zoom or come together in person.

Olcay: keeping our medical information confidential.

Simone: raised a big issue with Liberty as I still can’t find a lawyer to work with us on Heidi’s case. Everyone has the right to representation and there seems a refusal to support disabled people.

Vicky: look at self advocacy and young people. Also, coming out of the pandemic

2. Information share

Learning Disability Network Manager: The NHS England and NHS Improvement Learning Disability and Autism Engagement Team work to help people with a learning disability and their families, carers and supporters to have their say in work happening at NHS England and NHS Improvement.

We are looking for a new person with a learning disability to join our team as a Learning Disability Network Manager. The closing date for applications is Sunday 6 February 2022.

Online application form for Learning Disability Network Manager role - NHS England - Citizen Space

Empower Enterprise: Accessible Information and Communication Service Manager

People First (Self Advocacy) is looking for a new person to join their team as the Service Manager for the Empower Enterprise – accessible information and communication service. This position is for someone who has a learning difficulty, learning disability or autism. All roles are supported and we assist people to apply to Access to Work. th
Deadline for applications: Friday 18
Interviews will be held: Tuesday 1st March 2022 Please contact info@peoplefirstltd.com 020 7274 5484

February 2022

Patient Association Group update

Joanne and Ray told us about the group and what it’s

doing.

Patient Association Group

Rebels with a cause – Traverse

Chris spoke about the group and the webinar that was held before Christmas. Chris has been working with a researcher and has produced some art work.

Clarity Project

Follow up work has included working to make things more accessible. Rosie and Sophie will be good allies to help find appropriate representation and support.

Inclusion North

The Ministerial Oversight Group has been set up to look at Do Not Resuscitate orders https://forms.office.com/pages/responsepage.aspx?id= GuwRpGqSAU2pbsrvqg3rwRq4FNs2ZA1BgABVQtQX Y1tUNFFOS1hZWDlJVFdTVTBCSkgxQURLOVRKRi4u

The letter: https://inclusionnorth.org/wp- content/uploads/2021/11/MOG-easy-read-letter-final- 2.pdf

Action:

 Philipa to contact Clarity Team about coming to a future meeting about finding legal representation for people with learning difficulties.

 Vicky to speak to James Sanderson via Twitter about the group.

Next meeting: Wednesday 26th January 2022 12:30pm – 2:30pm

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

Chris’s Art Work

People with learning disabilities – COVID-19 Support and Action Group Wednesday 8th December 2021

noreply@blogger.com (PPLOG) — Tue, 14 Dec 2021 15:11:00 +0000

Time: 12:30pm-2:30pm https://us06web.zoom.us/j/97471173675 Meeting ID: 974 7117 3675 1.

Present Firielle Andrew Chris Olcay Simone Ray Sam Phil Sarah 2.

Introductions Andrew welcomed everyone to the meeting and asked how they were feeling. People talked about how they’re feeling.

Firielle and Andrew are fine. 1 Chris – worried he might have to leave his home. Simone suggested he get legal advice to support him. She’s offered to help him find a good solicitor with the right experience and who understands people with learning disabilities. The Covid Group all support Chris and are here for him.

Simone – feeling much better Ray – I’m going to Wakefield for Xmas. Doing some Xmas shopping.

Olcay – Last night was my friend’ funeral on line because she’s in Jamaica. She died in hospital and I don’t know why she was in hospital, I think it’s related to Covid. Now they’re talking about the new variant spreading. I don’t know if there will be another lockdown, I am worried. I need something to cheer me up.

2 Firielle: one of my friends in my group, his mum died from Covid. We can do something to cheer Olcay up as she’s had a crap week.

Simone: I’ve been to BT about my landline and am worried to do anything in case I lose my digital connection. I’ve mentioned the Equality Act to them and I’ll threaten them with action on Twitter. They’ve replied and said they’ll send an engineer down on Thursday. I’ve cc’d Ofcom too and I’ve put together a poll on Twitter asking people if they think my landline will be sorted on Thursday. I’m tired working from home. I’m pleased some of us are going out together. Interesting Twitter debate about the Downs Syndrome Bill and people are commenting on my diplomacy for once!!

Heidi has contacted Firielle about a new advisory committee being set up for people with Downs Syndrome.

3 There are 3 lesbians in the Covid group...hooray!! Lesbian strength in our group 

3. Long Covid It’s been difficult to find people with learning disabilities living with Long Covid and we don’t know why. Long Covid is now legally seen as a disability. Lots of people can’t work because of it. People might be worried they might not be believed if they tell the doctor their symptoms. None of us know people with learning disabilities who have Long Covid.

4 We could do a YouTube video about Long Covid. This group can do it based on the Long Covid easy read leaflet. We talked about working from home and how isolating this is for many people. Simone felt that it is affecting our mental health and our communities, it’s affecting our relationships. It is very worrying. She will be holding a workshop about this in January.

Olcay spoke about her friend who died from Covid and said she was scared.

Ray also spoke about his worries about the new Omicron variant.

5 We finished by planning our last meeting of the year. It will be a Christmas and end of year celebration. We agreed that there will be Christmas hats, mince pies and music. We will also look back on the last year and some of the things we’ve achieved together.

Next meeting: Wednesday 15th December 12:30pm – 2:30pm https://us06web.zoom.us/j/97471173675 6

A Hospital Nightmare.

noreply@blogger.com (PPLOG) — Fri, 03 Dec 2021 16:54:00 +0000

This comes with no apology for it being entirely personal.

On Tuesday last, I had to attend hospital for an assessment for a cataract operation - simple enough you might say. Fine, no problem with the assessment (or, normally, the operation). To get to the hospital, 13 miles away - there is no public transport from this small rural village my wife would have to take me and no way could she or I lift my wheelchair or scooter into her small car. So I contacted the hospital asking if wheelchairs are available there. Yes, no problem was the reply.

BUT! When we got there, the only wheelchairs are large ones that have to be pushed (no self-propelled chairs). And Kate struggled pushing one with lumpen me in it. She complained of a painful back afterwards.

Now the appointment letter told us the assessment was in Ophthalmology in the “Windsor Suite” but with no clue as to where the “Windsor Suite” is in the hospital. So I looked on the hospital website and it said Ophthalmology is just to the right of the main entrance! So we went to the main entrance reception and were directed back outside and down to another part of the hospital - true it is to the right of the main entrance but some way down from it. But we got there, with Kate still struggling.

At Ophthalmology reception they said: oh no! you have to go to the “Windsor Suite” on the second floor of the hospital! Back we went, through the main entrance (luckily we had allowed plenty of time), around the ground floor to the lifts and along about a quarter of a mile of corridors. We eventually found it and I was parked in the waiting area.

Unfortunately, Kate then had to leave to attend to other family matters. I was left waiting in the wheelchair for about 50 minutes. HELPLESS, as I couldn’t propel the chair or do anything myself. Other people waiting were appropriately socially distanced so that was no problem. My main concern dawned on me then. If I needed to go to the toilet I couldn’t do anything about it. There was no one in attendance to ask for help. I would be left to wet or even soil myself in my helplessness! (luckily I’d had the forethought to leave off my diuretic medication that day).

I was then seen by a nurse who wheeled me into her consulting room. In a long and thorough assessment she was excellent but a portent was hinted at.

She then wheeled me back to the waiting area and after another long wait I was seen by a doctor who also wheeled me around himself. He too was excellent. Bad news though. I was told by the doctor there was a consensus I would have to have a general anaesthetic for the operation itself. Partially because they’d had problems with my head staying still for retinal photos (essential tremors) but mainly because they’d sussed I can’t lie straight on my back, without acute pain for the half hour the operation would take.

The problem is in 2010 I was told by my Orthopaedic Consultant he could not operate because a general anaesthetic was far too risky because of my general shaky health.

The upshot is that I will have to have another appointment to see the Ophthalmic Surgeon. For that, I will have to find some way to take my own wheelchair or scooter.

Shadow report UNCRPD

noreply@blogger.com (PPLOG) — Fri, 26 Nov 2021 16:28:00 +0000

People First (Self Advocacy) 336 Brixton Road, London SW9 7AA Email: info@peoplefirstltd.com Website: www.peoplefirstltd.com This report is in three parts: Page 1: Page 9: Page 16: The workshop responses 10.11.21 Additional information from Simone Aspis Direct comments on the recommendations 1. The workshop responses 10.11.21 15 people attended We discussed all the issues and then agreed to do some follow up work to gather more information and evidence and examples to support our points. Generally people felt things have stayed the same since 2017, with not much improvement. Then Covid-19 highlighted (all at once) just how little the Government and some sections of society regarded the needs and rights of disabled people. People with learning disabilities felt scared, isolated, cut off and forgotten about. In some ways things had got worse for people. Since Covid-19 they felt scared, isolated and not valued, 1 especially as we heard more and more cases of people being given Do Not Resuscitation Orders without knowing and based on them having a disability (this is not always a health issue). One person said they felt things have definitely got worse.  The Government aren’t communicating with people with learning difficulties. E.g. Ed Davie MP brought parents together to talk about social care but didn’t include people with learning difficulties or DDPOs.  The Coronavirus Act allowed Local Authorities not to fulfil all their responsibilities under the Care Act. This affected people being able to get even the most basic of support.  MP for Stevenage spoke about the Government plans for social housing being reduced. See the Covid-19 Support & Action Group Covid-19 Statement https://peoplefirstltd.com/wp- content/uploads/2020/04/Coronavirus-Statement-from- People-with-Learning-Disabilities-21.04.2020-1.pdf Here is a summary of the points made. 1. How do you think the government is doing on protecting our human rights?  It’s worrying that there are plans to review/update the Human Rights Act and change parts of the Act and obligations that the UK ‘opts out’ of. 2    People generally talk about rights more and the UK has a better human rights record compared to some other countries.  Staff in our public services need to be better trained and aware of their responsibilities in promoting and protecting people’s rights.  Things like Hate Crime must be stopped, it shouldn’t be tolerated.  The Government are not doing as much as they could – people who cannot talk are not treated well.  Criteria for learning difficulties/disabilities is still based on intelligence and historical systems and hierarchies - but we can all face barriers. 2. What are they doing well?  We now have Peer in the House of Lords who have disabilities and understand and promote the rights of disabled people and the social model of disability. E.g. Baroness Jane Campbell’s work on a bill for The Government set up the Joint Committee on Human Rights (JCHR). EU Charter of Fundamental Rights – concerns about the impact of withdrawal from Uk law https://www.togetherscotland.org.uk/pdfs/HOL_seco ndreadingbriefing_charter%20FINAL.pdf 3 Independent Living. It gives us ambitions for positions like this.  Our right to vote – local politicians and UK Parliament are working well to engage with and include disabled people in politics.  Accessible public transport – new stations and vehicles are more accessible. Brought about by pressure from outside the central Government though.  Not enough social care for people to live in the community independently.  Emergency Covid-19 funds were made available and accessible quickly through a number of channels. 3. What are they not doing well?  The Covid-19 pandemic showed us that the Government did not see disabled people as important at first. It felt like we were at the bottom of the list and had to fight for ‘our right to life’. We also had to campaign to be a priority for vaccinations.  People with learning disabilities are still being locked away in institutions (Assessment and Treatment Units) and continuing to be treated badly and isolated from families (Winterbourne View and many others). The recommendations and targets in 4 the Transforming care: A national response to Winterbourne View Hospital not being followed up. See our Statement on Assessment & Treatment Units https://peoplefirstltd.com/wp- content/uploads/2020/09/Assessment-and- Treatment-Units-Position-Statement-1.pdf  Producing accessible information and making reasonable adjustments in a timely manner. Not included in the mainstream – always marginalised, the easy read information being produced late during Covid-19 is an example of this.  Digital exclusion – a lot of health (including GPs), social care and housing information and systems going online.  People with disabilities having to move out of area for support.  Limited and inaccessible consultations for potential changes in law – E.g. Mental Capacity Act  Care Act, Accessible Standards all good but need proper implementation.  Providing good guidance on benefits.  Reporting the deaths of people with learning disabilities from Covid-19 Every life matters campaign https://peoplefirstltd.com/wp- 5 content/uploads/2020/05/Easy-Read-Every-Death- Counts-campaign.pdf  National shortage of health professionals that affects Disabled people being able to access health services. E.g. the shortage of Learning Disability Nurses. ‘In 2018, the number hit a record low of 3,192 – a fall of 40% in less than a decade. Since then, it has risen to 3,214 – an increase of just 22 full-time equivalent posts in the NHS.’ Source: https://www.rcn.org.uk/news-and- events/news/uk-shortage-of-learning-disability- nurses-could-be-putting-lives-at-risk-warns-rcn- 220621 4. What needs to change?  The Government’s attitude to Disabled people.  Attitudes and approaches to housing needs to change to help people live independently and get adaptions – not institutions! More understanding and support for people with learning and physical disabilities.  Need more creative solutions to supporting people to live in the community – not on the margins.  Digital exclusion – digital developments are moving fast and not in-line with 6  Understanding what we are saying about independent living National Independent Living Support Service (NILSS). More choice and community presence.  Employment levels for people with learning disabilities (6%). Government messages need to promote positive policies and attitudes, not perpetuate negative ones.  Make it harder to weaken current legislation that protects our rights – any changes must strengthen them.  Government need to talk directly to people with disabilities and lived experience – this still doesn’t happen with people with learning disabilities. Others (usually non-disabled people) are spoken to on our behalf (de facto). We need more access to Government.  Social Care for all ages of people that need it. 5. What new issues have emerged since 2017?  Government proposals to reform Human Rights law. The update the Human Rights Act and administrative law...” Independent Human Rights Act Review (IHRAR) was set up December 2020.This was set up following the Conservative party’s pledge to “ 7 The report of the review is still to be published. Here’s the BIHR response to the review https://www.bihr.org.uk/Handlers/Download.ash x?IDMF=6efd6aef-3bc3-4c75-867c- d744ede5d0c9  Brexit and the loss of protections in EU law and access to European Social Funds for Disabled People and Deaf and Disabled Peoples Organisations.  Environmental considerations – proposed changes and developments not being communicated in an accessible way or consideration of some of the initial negative impacts on Disabled people. Plans not taking into account access needs regarding transport and energy etc. 8 2. Additional written information from Simone Aspis 1. Whether things have got better or worse or stayed the same since the last examination in 2017 Things have got worse... Article 5 – Equality and non-discrimination Heidi court case highlights the continued disability discrimination – before birth disabled and non-disabled unborn babies do not enjoy the same legal status in law. Equality Act needs to be made stronger – cannot enforce the law because it cost too much money to go to court, medical model and is not always clear what is meant by reasonable adjustments – should it be reasonable adjustments? Public Sector Equality Duty – means that all the state has to do is reconsider the decision after consulting disabled people properly – do not need to make changes to the decision, Article 6 – Women with disabilities Girls and women find it much harder to have their learning difficulties recognised by professionals. This is because professionals do not always understand how women and girls can be very good of hiding their difficulties from families, schools, social services and alike. Women with learning difficulties are still being sterilised or being encouraged to have abortion or give their 9 children up for adoption. Social Services still do not do enough to help parents (usually mums with learning difficulties) keep hold of their children. Questions need to be asked if children with learning difficulties are not taught about relationships, sex etc. whilst in education. Lots of girls and women with learning difficulties are locked up in psychiatric hospitals is because they are often diagnosed with a mental health condition rather than a learning disabilities, learning difficulties and autism. Article 7 – Children with disabilities Increasingly children with learning difficulties and autism are ending up in psychiatric hospitals. Double the number of children are locked up in hospitals because of the lack of recognition of learning disabilities/difficulties and autism. This leads to children and young people do not get the support they need to be educated in mainstream schools and live at home. There is a lack of education, health and care support for children with LDs to help children live at home. Many children with high needs end up having to go to residential special schools or end up in hospitals. Families are less likely to get the support they need to help their children flourish. Article 9 – Accessibility There is a lack of accessibility and reasonable adjustments – such as provision of easy read information, face to face meetings etc. Article 10 – Right to life Article 25 – Health 10 Article 26 – Habilitation and rehabilitation Heidi court case - right to life before birth – less rights than non-disabled unborn babies. The covid-19 paramedic was used to ration health care for people with learning difficulties – GPs were found acting unlawfully by putting DNR notices into people with learning difficulties medical records – telling doctors and health care professionals not to give us healthcare treatment. 6 times more likely to die from covid 19 if one had a LD. And for young people it was 24 times greater than the general population. We had to fight to get covid-19 vaccinations as a priority group. Before covid-19 paramedic – many people with LDs die at least 10 years earlier than their non-disabled peers. Too often doctors and medical professionals do not listen to us, do not take us seriously and do not want to give us treatment that non-disabled people would have received. Children and young people with LDS have had their therapy services taken away or reduced and have not returned to prior paramedic levels. Article 12 – Equal recognition before the law People with learning difficulties do not have the same legal status in law with their non-disabled peers. People with learning difficulties can be forced into 11 institutions, denied the right to make decisions and treated against their wishes. Many people with learning difficulties can be medicated and treated that makes them more unwell rather than better. (I.e. antipsychotic medication) People with learning difficulties can be labelled as losing capacity and therefore lose a lot of rights to make decisions that non-disabled people can make. Article 13 – Access to justice Majority of people with LDs cannot afford lawyers. They have to rely on legal aid which is harder to get for fewer types of court cases. For example, one cannot get legal aid for taking on disability discrimination cases. It’s very hard to get money for legal cases because one must get benefits and not have much money in the bank. Many people with LDs do not think crime is taken seriously – hate crime in particular. Do not get enough support in the criminal justice system as someone who is a victim or is accused of crime. Article 16 – Freedom from exploitation, violence and abuse There is growing evidence that LD people are not being protected against violence and abuse. The on-going scandals of LD people in institutions and segregated education settings continue to allow violence and abuse of LD people. There have been plenty of TV programmes, social media exposure and reports published highlighting the abuse of LD people in institutions. CQC and other public bodies have been pretty useless in preventing such abuse. 12 Article 17 – Protecting the integrity of the person Many LD people are being denied to make decisions and have control over their lives. LD people do not have the same opportunities as their non-disabled peers to develop themselves, to choose how they want to live their lives and support to have control over their lives. Many LD people do not have any choice about their education, work, and leisure, housing and alike. Article 19 – Living independently and being included in the community Article 28 – Adequate standard of living and social protection Article 22 – Respect for privacy Article 23 – Respect for home and the family Article 29 – Participation in political and public life Article 30 – Participation in cultural life, recreation, leisure and sport Majority of LD people still live with parents and family right through older age Lack of resources to support LD people in the community Viewed as community care placements rather than homes Lack of choice of homes and support arrangements – minimum care support Focus is on independent living – medical rather than social mode of disability Not supporting LD people to have full lives – to do what they want whenever they want etc. 13 Cannot take full time work because it can mean that LD persons have to pay for their own support. Need to stop institutionalised care settings – hospitals, group homes etc. Lack of control over support Insufficient support and importance of LD people being supported to engage in various activities. Many activities are still not inclusive of LD people, particularly those who are labelled as having severe and profound LDs – design of activities are not inclusive. Lack of community facilities such as changing places toilets for example LD people’s rights to have family (children) and live with family (LD children with their families) Covid-19 had a big impact. Social security benefits do not cover the real cost of living. Article 21 – Freedom of expression and opinion, and access to information Increasingly parents and professionals are speaking about us without us. They are talking about us a lot - Government funds national parents and carer’s forums whilst speaking up groups get no or little money. Parents and professionals are appointed onto Government, parliamentary and other influential public body task forces. There may be at best one token person with learning difficulties. For example various task forces dealing with people with LDs and Autism stuck in ATUs. This includes state funded research and projects where its parent and professional lead organisations and people win the contracts and control if 14 and how people with LDs are involved. Examples include covid-19 research, projects and alike. There has been fewer people with LDs, experts by experience hired for independent care and treatment reviews. People with LDs do not have a real voice or influence – this is because the state funds and supports the voice of others with LD. People with LDs can be fearful of speaking up and out when they are using services or are in institutions – the fear of being punished or having services taken away from oneself etc. People with LDs are not supported to have a collective voice and therefore individuals can just been seen as those and nothing more. Article 24 – Inclusive education Increased segregation and exclusion of people with learning difficulties from mainstream education. More children and young people with learning difficulties are now placed in special schools, being educated at home, excluded from school. Children and young people with learning difficulties are less likely to be in mainstream education. 15 3. Direct comments on the recommendations Recommendations 114. The Committee recommends that the State party: (a) Conduct a cumulative impact assessment of the measures adopted since 2010, referred to in the present report, on the rights to independent living and to be included in the community, social protection and employment of persons with disabilities. The State party should ensure that such assessment is rights-based and meaningfully involves persons with disabilities and their representative organizations; We don’t have much evidence to suggest that there has been an impact assessment that involves us and our organisations. People First is a national user-led organisation and has not been invited to be involved in any impact assessment. (b) Ensure that any intended measure of the welfare reform is rights-based, upholds the human rights model of disability and does not disproportionately and/or adversely affect the rights of persons with disabilities to independent living, an adequate standard of living and employment. To prevent adverse consequences, the States party should carry out human rights-based cumulative impact assessments of the whole range of intended measures that would have an impact on the rights of persons with disabilities; 16 As above – People First and other self- advocacy organisations are not aware if this has been done and if it is, who has been involved from our community. (c) Ensure that: any intended legislation and/or policy measure respects the core elements of the rights analysed in the present report; persons with disabilities retain their autonomy, choice and control over their place of residence and with whom they live; they receive appropriate and individualized support, including through personal assistance, and have access to community-based services on an equal basis with others; they have access to security social schemes that ensure income protection, including in relation to the extra cost of disability, that is compatible with an adequate standard of living and ensure their full inclusion and participation in society; and they have access and are supported in gaining employment in the open labour market on an equal basis with others; The Coronavirus Act did not support this recommendation. The Government focused a lot on people within care homes/residential care during the pandemic but had little focus on people living in the community. (d) Ensure that public budgets take into account the rights of persons with disabilities, that sufficient budget allocations are made available to cover extra costs associated with living with a disability and that appropriate mitigation measures, with appropriate budget allocations, are in place for persons with disabilities affected by austerity measures; The welfare reform and changes has reduced income for many people with disabilities. 17 Benefits not linked to RPI but the CPI so not keeping up with the cost of living. Some of our members have had to use alternative sources of support such as Food Banks and Mutual Aid groups. (e) Introduce all adjustments necessary to make all information, communications, administrative and legal procedures in relation to social security entitlements, independent living schemes and employment/unemployment-related support services fully accessible to all persons with disabilities; No one agreed that this had been done, in fact people felt it had got worse. https://peoplefirstltd.com/accessible- information-campaign-call-for-signatories/ (f) Ensure access to justice, by providing appropriate legal advice and support, including through reasonable and procedural accommodation for persons with disabilities seeking redress and reparation for the alleged violation of their rights, as covered in the present report; Getting support to understand and access the justice system is very difficult. A member who sought support via Citizen’s Advice was not able to have an appointment long enough to meet their needs. Also, the Legal Advice service is not skilled up enough to meet the needs of people who need reasonable adjustments and accessible information. 18 (g) Actively consult and engage with persons with disabilities through their representative organizations and give due consideration to their views in the design, implementation, monitoring and evaluation of any legislation, policy or programme action related to the rights addressed in the present report; This does not happen as it should. This was demonstrated with the lack of proper engagement and accessible information for the proposed amendments to the Mental Capacity Amendment Bill in 2018. Also, the Coronavirus Act. (h) Take appropriate measures to combat any negative and discriminatory stereotypes or prejudice against persons with disabilities in public and the media, including that dependency on benefits is in itself a disincentive of employment; implement broad mass media campaigns, in consultation with organizations representing persons with disabilities, particularly those affected by the welfare reform, to promote them as full rights holders, in accordance with the Convention; and adopt measures to address complaints of harassment and hate crime by persons with disabilities, promptly investigate those allegations, hold the perpetrators accountable and provide fair and appropriate compensation to victims; We do not see the Government countering any negative stereotyping that happens in the media or in the general public. Hate Crime figures continue to rise 19 Source: https://www.gov.uk/government/statistics/hat e-crime-england-and-wales-2020-to- 2021/hate-crime-england-and-wales-2020-to- 2021 (i) Ensure that, in the implementation of legislation, policies and programmes, special attention is paid to persons with disabilities living with a low income or in poverty and persons with disabilities at higher risk of exclusion, such as persons with intellectual, psychosocial or multiple disabilities and women, children and older persons with disabilities. Those measures should be put in place within contributive and non-contributive regimes; 20 Covid-19 highlighted how little attention was paid to Disabled people. We had to campaign hard to be paid attention to and heard. https://www.disabilitynewsservice.com/shock ing-figures-on-deaths-of-people-with- learning-difficulties-show-need-for-vaccine- action/ https://www.disabilitynewsservice.com/vacci ne-priority-decision-is-campaigning-victory- but-concerns-remain/ (j) Set up a mechanism and a system of human rights-based indicators to permanently monitor the impact of the different policies and programmes relating to the access and enjoyment by persons with disabilities of the right to social protection and an adequate standard of living, the right to live independently and be included in the community and the right to work, in close consultation with persons with disabilities and their representative organizations in all regions and countries that constitute the State party; The Government are not adopting mechanisms or systems that set out human rights based indicators, despite these being clearly presented by the Disabled movement National Independent Living Support Service (NILSS) (k) Respond to the present report within the time limit prescribed under the Optional Protocol, widely disseminate the Committee’s findings and recommendations and provide appropriate follow-up to the recommendations of the present report, including 21 during the consideration of the State party’s initial report before the Committee. We were unable to respond to this. 22