Inclusion? Here’s how!

7 Apr

We're going to an NHS Citizen Design Workshop!

Malak

 

Hey gang, there’s an event I’m going to be involved in next week. It’s the NHS Citizen Design Workshop.

 

 

Ace Man

 

What’s that about?

 

 
 
 

Malak

The NHS are changing how they do things and how they plan new ways of working. They want ordinary people to be involved and have a voice about how to do this.

 
 

Kick Ass Maracas

How can they give people a voice and include everyone? Usually we’re not included and decisions are made about us or for us without asking us.

 
 

Ace

Yes usually everything is in jargon and we can’t understand what’s going on in meetings and at conferences. Yeah and things are always too long and so boring! I hate meetings and conferences.

 
 

Annabel

Yes and quite often there aren’t many people with learning disabilities at these events because it’s very hard to join in. Sometimes the venues aren’t very wheelchair friendly either.

 

Malak

Well I’m going along to try to help them try and understand how to make it more inclusive. What do you all think would make it easier for you to be involved?

 
 

Annabel

Well they need to think about how they give information to people. Lots more people could be involved if they made their information easy-read and with pictures to support the words. It would help to have information in easy-read before the event so we know what it’s about and what will happen.

 

KA Maracas

They definitely need to stop using jargon! It would be great to go to a conference where the presentations were done as key points and made clear and simple.

 
 

Ace Man

It would help if people were asked to speak more slowly as well. It would be less boring if there were more breaks so you had time to understand the information.

 
 

Annabel

If they want people to be included and have a voice then they need to think in a person centred way and that means being flexible to people’s needs.

 

A-team members

 
 

We have a lot to offer because our experience comes from the heart and it’s time we were included and had a voice!

I Never Admitted I had a Learning Disability………

31 Mar

Annabel:

The A-team is reblogging this Guest Blog by Shaun Webster, worker with a learning disability at CHANGE because Shaun is one of our heros.

Originally posted on Philipa at Changepeople:

Shaun I am Shaun Webster, European Project Coordinator in CHANGE. I am a person with a learning disability. From my heart I feel very proud to be working in CHANGE. If I didn’t have CHANGE in my life I would be stuck in a dead end job with no power at all. I would be feeling isolated and small with no one taking any notice of me. Now I feel powerful and equal. In the past I used to despise having a learning disability. I used to hide it away. I used to feel embarrassed about it because people used to call me names and abuse me. My dad was embarrassed that I had learning disabilities. If I said that I had a learning disability I felt they treated me like a baby and a second class citizen. Now I am proud that I have a learning disability. I feel that…

View original 529 more words

Pledging to make things better in the NHS

24 Mar
NHS Expo in Manchester last month - Innovation in Health and Care

People with learning disabilities tell it like it is at the NHS Expo in Manchester last month

Malak

I went to the NHS England Health and Care Innovation Expo in Manchester last week.

 

 

Ace Man

Oh, what was that like?

 

 

 

 

Malak

It was really interesting. There were lots of people taking part. There were displays and speakers, workshops and cafes.

 

 

 

 

Annabel

Why were you there?

 

 

 

 

MalakI went with our organisation. We were networking, taking part in group discussions and doing presentations. Some of our group got filmed talking about the work we do about involvement, co-production and people with learning disabilities. There was an area called Speakers Corner where people could take part in discussions about making the NHS better. People were invited to make pledges about how they are going to do this.

 

 

 

 

Ace

What are pledges?

 

 

 

 

Malak

A pledge is a promise to do something. People could write a pledge on a flag about what they will do or write or draw on a graffiti wall to share good ideas.

 

 

 

 

Annabel

I can think of a few things I’d like the NHS to promise to change. What about accessibility when I go to the doctor or hospital. I’d like them to pledge to make reception counters lower for people and think of people who are wheelchair users.

 

 

 

 

Ace

I’d like them to pledge to make the touch screen easier to use at the doctors – I can’t use it easily.

 

 

 

Kick Ass Maracas

I’d like them to make sure all the NHS staff get disability awareness training. They should learn about better communication and how to listen properly. They need to understand that everyone has different communication needs.

 

 

 

 

Ace Man

I want to be treated as a person – not just seen as my disability.

 

 

 

 

Malak

I think it would be good if they thought about giving people accessible information when they need it. You need easy-read information when you go home to help you with taking your medicine, as well as at the doctors.

 

 

 

 

Annabel

These are all things health and social care workers need to think about changing if they want the NHS to be people-centred. They need to listen to people with disabilities.

 

 

 

 

Ace Man

Pledges are good but you have to carry them out. It’s like the A Team. We have all pledged to raise awareness about accessibility and disability issues and we do it!

Personal Budgets – What does it mean?

10 Feb

Ace Man

I’ve been hearing a lot about Personal Budgets, what does this mean?

 

Annabel

Oh, I am just trying to understand that myself as everything is changing.  But it’s about getting money for the care and support I need.

 

 

Malak

I’ve heard it’s supposed to give us more choice and control so we can have a better quality of life – but I only know one person with learning disabilities who has a Personal Budget.

 

 

KA Maracas

Yes, but how is that different from Direct Payments? Are you still getting the money that you need?

 

 

Annabel

Yes I am but I can decide how to use it. It’s about me being at the centre of my care. I can decide what care I want and who’s going to provide that support and care. It’s personal to each person as everyone is different.

 

 

Ace

But why is that better?

 

 

Malak

It’s better because when services are planned they ask the person that who needs them what they want. Also health care and social care professionals are going to work together better to help each person.

 

 

Annabel

I think we might be able to use our Personal Budgets to get more involved in community life, which would be great, because I know lots of people with learning disabilities don’t feel included in their communities.

 

 

Ace

But how are we going to find out about Personal Budgets so that we understand what it is and know what help and support is available? I’ve never seen any easy read information about Personal Budgets.

 

 

Kick Ass Maracas

Neither have I. We need information about Personal Budgets that has pictures and easy words. This would help us to get the right information without relying on our social worker or our support worker to get it for us. Videos would help us to understand too. Then we’d have more power!

 

 

Ace Man

Has it made a difference for you, Annabel?

 

 

Annabel

Yes, I can choose what support I get and also change it to something else when my health changes. I have more freedom to get around because my transport fits round me rather than the timetable of the provider. This make me feel much happier because I am more independent.

 

 

KA Maracas

We will just have to see how it works out for different people as it’s a lot of changes to services and people are a bit worried about how it’s going to work for them.

 

 

Malak

I think we will need good support to understand the changes and how they will affect us. We need Peer to Peer support and training from other people with learning disabilities to help us understand what our rights are, what Personal Budgets are, how we get them and what to do if things go wrong.

 

 

Annabel

Oh, Peer to Peer and easy read information, wouldn’t that be great. I can feel the power!

 

 

How was your Christmas?

20 Jan

KA Maracas

Did you have a nice Christmas?

 

 

Malak

No. I was on my own and I felt a bit lonely.

 

 

Kick Ass Maracas

Sorry to hear that. Do you not spend it with your family?

 

 

 

Malak

They all live far away and anyway I don’t really get on with them.

 

 

Annabel

It was hard for me too – it was my first Christmas without my mum and I miss her lots.

 

Ace

That’s sad for you. Everyone remembers loved ones they have lost at this time of year.

 

 

Kick Ass Maracas

Yes, and it is hard because everyone expects you to be happy. I found it difficult at Christmas-time because my usual support group has a break.

 

 

Malak

Wouldn’t it be great if there were places where you could get support and meet people who are also struggling?

 

 

Annabel

That’s a good idea. I’m lucky that I live in a community where neighbours check on each other. My neighbour bought small gifts for the people who were on their own.

 

 

Malak

It would have been nice if I’d had somewhere to go to share a Christmas meal.

 

 

KA Maracas

My family like to do things for other people at Christmas. We helped at a local soup kitchen for homeless people.

 

 

 

Ace Man

That’s great. People need to be more sharing and generous and think about other people at Christmas, not just their own families.

 

 

 

Kick Ass Maracas

We can get involved in things happening to help others who are struggling in our community. That can help us to be happy too.

 

 

Malak

Shall we find out what’s happening in the community and all get involved next Christmas?

 

 

 

KickAss, Ace Man and Annabel from the A-Team

 Yes, great idea!

2013 in review

6 Jan

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,100 times in 2013. If it were a cable car, it would take about 35 trips to carry that many people.

Click here to see the complete report.

Co-production works!

17 Dec

KA Maracas

Hey Annabel, I’ve been thinking about Co-production a lot since we talked about it and it reminded me about my cousin Mary. She has learning disabilities and had a hard time a few years back. She had three kids and lived in a really rough area where there were problems with drugs and poverty. She didn’t get the support she needed and ended up losing her kids. She was devastated.

 

Annabel

 

That’s sad. So what happened?

 

 

 

KA Maracas

She got involved with an organisation called CHANGE who campaign for the rights of people with learning disabilities. They employed her as a co-worker on a project making an accessible book about pregnancy and birth. She was very happy to have a proper paid job especially doing work that was helping people with learning disabilities.

 

Annabel

 

That’s great.

 

 

 

Kick Ass Maracas

While she was working at CHANGE she was able to have enough money to get her own place and make positive changes in her life. She got pregnant again and when she left work she was able to keep her baby because she had made her life better and safer. She also knew that it was her right to get support to keep her child.

 

 

Annabel

That’s a really positive story about someone being involved in co-production and the difference it made to her life. We need to keep on pushing for change so people with learning disabilities can be employed in real jobs.

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