self advocacy | Include.org

Breaking Down Barriers – there’s an app for that!

When healthcare information is accessible and understandable for all, it can literally save lives.

Alix Lewer, Founder and CEO of Include and The Include Champions helped to develop an accessible version of the CardMedic app…a tool that breaks down barriers to good communication in healthcare.

It’s a partnership that we are really honoured to be part of. We wanted to know a bit more about what the people at CardMedic thought, so we asked!

Rachael Grimaldi – Co-Founder and CEO of CardMedic

What is CardMedic’s mission?

At the point of care, the inability to communicate is the largest single contributor to health inequalities, and patients with additional communication needs make up nearly 50% of the population.

CardMedic’s mission is to break down communication barriers between healthcare staff and patients by making healthcare information accessible and understandable for all.

We’re committed to inclusive communication and believe in acknowledging and accommodating everybody, regardless of their communication needs. Our aim is to provide intuitive and cost-effective technology that empowers clinicians and patients to communicate quickly and efficiently across any barrier, enabling more effective delivery of care, reducing health inequalities, and improving patient outcomes.

Why did CardMedic want to work with Include?

We were really keen to work with Include because we share their mission to break down barriers and create a more inclusive world. At CardMedic, we recognise that accessible information is vital for ensuring equitable care delivery, so we couldn’t imagine a better partner.

Alix Lewer’s expertise as a Speech and Language Therapist, as well as Founder and CEO of Include, made it a no-brainer. She and her amazing team have been invaluable in helping us improve communication in healthcare and increase our understanding of the challenges people can face.

Together, we’ve been able to develop innovative solutions and resources that empower us to think differently about how we communicate. Particularly in a healthcare setting, we’ve learnt how to effectively communicate with patients with diverse communication needs and improve health outcomes for underserved populations.

Our shared vision of inclusivity and accessibility made us confident that partnering with Include would help us work towards a more equitable healthcare system for all.

How did the partnership help your project?

Alix is incredibly knowledgeable in the accessible information space and about the Mental Capacity Act (2005). She understands that inclusive communication means recognising and respecting all forms of communication–not just the written and spoken word.

Drawing on her knowledge of inclusive practice in health and social care, having worked as a Speech and Language Therapist in the NHS, Alix contributed to the initial development of an accessible version of the CardMedic app. Include’s lived experience Champions Group also continues to work with us to review our content regularly and provide feedback about accessibility.

Our partnership with Include has helped us refine our content to ensure that it’s as accessible as possible to individuals with diverse needs, including those with learning differences, visual and hearing impairments, and language barriers.

Alix’s expertise has helped us convert our library of scripts covering a vast array of clinical specialties and sub-specialties into Easy Read, at a reading age of 6 or under. This essentially means it is accessible to many more people than traditional information would be, both children and adults.

What would you say to others thinking of partnering with Include?

For anyone working in the accessibility, language, and communication space, they would be remiss not to reach out to Include! Include promotes inclusion and wellbeing, empowers people with additional communication needs, and ensures that they have equal access to services, facilities, and opportunities. They do a fantastic job of collaborating with businesses, educational institutions, and other organisations to help raise awareness of accessibility and provide practical solutions for inclusivity.

Include also offers brilliant training and consultancy services to help organisations improve their practices by making them more accessible. By partnering with Include, you’ll gain valuable insights, guidance, and resources to enable you to create a more inclusive environment.

The team are so friendly, and their expertise will help you address communication barriers and send out a powerful message about your commitment to inclusivity. All in all, we’d highly recommend partnering with Include!

Get in touch with Include, please email : info@include.org

More information : https://www.cardmedic.com/

(She won’t tell you herself, but while we are here and talking about healthcare…Alix won a Royal College of Speech & Language Therapists’ Giving Voice Award for voluntary work with The Mental Capacity Act Clinical Excellence Network – Raising Awareness of Supported Decision Making at End of Life.)

Penny Sims
Communications and Partnerships Manager

Meet Beth

Everyone is welcome

When I talk to people about Include, I always say how much it has made a huge, positive impact in my life and improved my quality of life, given me a purpose and that it is the BEST charity I have ever come across where EVERYONE is included, everyone is welcome.

I want the world to know that there is no place anywhere that makes you feel so included, safe, comfortable, happy and purposeful as Include does.

How it started

I first found out about Include by research. I moved back down to Surrey from Coventry, and wanted to find out if there were any Makaton groups nearby and that’s how I came across Include. I messaged Alix and it all went from there.

I wanted to get involved because I was very lonely and I enjoy Makaton so much, and use it a lot personally.

At first, I was very anxious, only because I always am when facing new places, people and situations BUT this didn’t last long! Soon I was comfortable and felt ‘included’ and part of an amazing community and surrounded by lovely, genuine people.

When I first went to Include, I started off just joining in the choir every Wednesday evening in Redhill.

Growing in confidence

It wasn’t long before I wanted to volunteer, make a difference and help others.

I also started to attend some of the Stroll and Sign walks on Saturdays, going to performances, and helping to design the new ‘Star of the month’ certificate and another certificate.

I am also now part of the Champions Group which I really enjoy and feel we all make a difference by working on and designing Easy Reads for people and giving examples and explaining things like ‘reasonable adjustments’ etc.

Since being part of Include, I have gained confidence, made friends and have something to really look forward to each week; helping others, having fun, being included and having a purpose.

Signs of Change

Although I already knew most Makaton signs before I came across include, I have gained more skills from The Include Choir and the Champions Group. These include improved speaking and listening skills, trusting people because I feel comfortable with the people I’m surrounded by and learnt a couple more skills on my computer.

The things I do with Include really help me day to day and help my support workers, family and others around me to understand and communicate with me, and others in a better or different ways.

When I struggle, I can become non-verbal, so for support workers and family to know basic Makaton signs is very important and helpful. I am now able to feel confident to teach them the important basic signs that are useful so that they can best support me.

I think it is important for people in all sorts of jobs to know basic Makaton e.g. hospital staff, doctors, teachers in schools, dentists and other professionals that might come across people who may use a different form of communication like Makaton.

We are all different…

My favourite quote is ‘we are all different, but all equal’ and I feel everyone at Include is treated equally no matter what their needs are and this makes me very proud to be a part of such an amazing group.

The next step in my Include story is to do volunteering more and make more of a difference, help people more, improve more skills and gain more confidence.

I have a goal and that is to do a solo Makaton song at Christmas, I hope I can get enough confidence in time.

Discovering Include is the BEST thing that’s happened and I am very grateful for all that everyone does to make it such a lovely, enjoyable group.

Penny Sims
Communications and Partnerships Manager

Reasonable Adjustments

At Include, we work hard to ensure that communication needs or disabilities are not a barrier to access or inclusion in our projects.

We proactively make reasonable adjustments – and we keep listening and checking what else we can do to ensure people have equal access.

We admit that we can always improve in this area.

Probably most services, charities and businesses can do more to enable genuine equality of access. We don’t just mean how easy a building is to access if you have a mobility issue. But the whole experience – how people interact and communicate, how we experience an environment or service from a sensory point of view etc.

A graphic representation of a ramp - explaining the things that support Communication access. 1 Raise Awareness of Communication Needs. 2 Increase Understanding of Inclusive Communication 3 Build confidence and self-advocacy in people with Communication needs 4 Train people to be inclusive communication partners.

Focussing on improvements that help individuals and getting it right tends to enhance things for everyone, with or without an additional need.

FREE Easy Read download about Reasonable Adjustments Download

As well as coproducing a FREE Easy Read on Reasonable Adjustments, our lived experience consultancy team The Include Champions are reviewing some of the things we do within Include and helping to fine-tune them.

By sharing this FREE Easy Read we hope more people with communication needs and disabilities will have better experiences when they go to work, interact with services or are customers in shops and restaurants.

Email

We recently talked about our emails.

We already use accessible fonts and Easy Read format – with a picture to reinforce each point.

But our members suggested that we use shorter and simpler links, and make the writing bigger.

Website

Image of a young man pointing at the colour red on a board which has two colours on it - red and blue

We’re becoming even more aware of the importance of colour contrast in terms of how easy, or not, it is to read and have started to use a new resource to check this: https://colourcontrast.cc

Furthermore, we are going to be working harder to make best use of alternative (Alt) Text to describe the images we use on our website and elsewhere. Thanks to Colin Grist from Few and Far for his recent free talk and tips on website accessibility.

A screen shot of a calendar of things Include.org is doing on 15th 18th and 19th of July. Which are Stroll and Sign on 15th at 11am, Epsom Include Choir on 18th at 6pm and Redhill Include Choir on 19th at 7.30pm

Our website provides project information in a calendar format so members can check at any time what projects are running, where and when. One of our Champions, Hannah is encouraging everyone to use it – it means you don’t have to wait for the emails!

Visuals

A photo of the list of songs that Include Choir members have put together on a board. Includes songs Any Dream Will Do, Three Little Birds, This is M, Sweet Caroline, I have a Dream, Fly a Kite, Don't Worry Be Happy, Shotgun and Wonderful World

Consultation and co-production are central to the way we do things, so naturally Include Choir members help to write lyrics and choose which songs we learn to sing and sign.

Visual and tactile prompts help people with communication needs. So, we make a physical list of song names with visuals using Velcro. Members choose from a whole table full of song options to decide which songs we perform at certain events.

Recently Hannah, one of our members has suggested that our song polls on Facebook also have an image to represent each song option to enhance understanding.

We also have a photo board at the choir sessions – this is for people to add themselves (sign in – without needing a pen) as they arrive and so everyone can see from the photos who is there that day.

Recently we have had feedback to say that we should make the signing in board a bit more organised so that volunteers are shown in a board along with an idea of their role that day.

Objects

Hattie the hat stand is never far from Choir Director Alix’s side! There is a very good reason for that. We have Hattie because it carries all our props or objects of reference. We use physical props because some people find objects helpful to enhance understanding – because communication is more than signs or words.

Champion Beth feels the props are good as we have some visually impaired members – props can enhance their experience too. Member Philip loves the hat stand and Josh reminds us to include Hattie in some of our photos!

Location

A photo of 5 people walking down a path in the countryside chatting and using hand gestures while talking

Many of the adjustments we make are not to do with literal access ramps (often the first thing that comes to mind when people consider disability access). That said, when we run projects like our Stroll and Sign wellbeing walks, or perform as a choir in new locations we always risk assess beforehand.

An important element of that is assessing accessibility and working out what adjustments we may need to make. For example, regarding lighting in a car park, suitability for wheelchair users or access to a stage. And if we need to, we do feedback to venues about any issues to try to improve things.

If you would like some guidance on inclusive communication, or access to a lived experience a focus group to look at this topic for your organisation please get in touch: info@include.org

Penny Sims
Communications and Partnerships Manager

Vote like a Champion!

Ahead of the local elections on Thursday 4^th May, The Include Champions Group has created a FREE Easy Read guide to voting for people with communication difficulties.

Voting Easy Read Guide from Include.org:Download

Here is the audio to listen to the guide: https://soundcloud.com/include-org/voting-like-a-champion?

The My Vote, My Voice group have accessible information about voting on their website too.

Our Champions have been sharing their experiences:

Hannah’s experience

During Covid times, Hannah, one of our Champions voted by post. But gradually she has decided to go to a Polling Station.

She knows she can ask for help from the people working there but Hannah has become more confident over time about being independent when voting in person.

First, she talks about it with her family and thinks really carefully about who she wants to vote for. She now votes independently.

Planning Ahead

The Include Champions pointed out that if you live in supported accommodation, or a block of flats you might not get someone knocking on your door or putting a flyer through your door about their party. So, it’s not always easy to get information to be able to make a choice about who you want to vote for.

Despite that, our Champions did know about The Conservative Party, SDP (Social Democratic Party), Liberal Democrats, Labour Party, Green Party, Heritage Party and The New Forest Party. There are lots of options and you can talk to your friends and family and get ideas to help you make a choice about who to vote for.

Ellie voted by post – you need to register to do this before the election. Ellie’s Mum helped her do this online.

Voting in person

Some people prefer to vote in person. David said that it is too far to walk to the polling station, so he needs to ask for help / transport to get there.

Remember your Photo ID to vote in person.

If you are voting on your own and don’t know what to do, you can always go into the polling station and say “I am here to vote, please can you tell me which desk to go to.”

The helpers can’t actually tell you which party to vote for – that has to be your choice.

Apparently, all the polling station staff have been trained to look out for sunflower lanyards – so they know that people may want to be offered extra help. So, you can wear one if you have one.

More participation

Changes (set out in The Elections Act 2022) are designed to boost the political participation of people with disabilities in voting and standing as political candidates. The Local Government Association provides support to disabled councillors and those considering standing for election to their local council.

You can read more about it here: https://commonslibrary.parliament.uk/research-briefings/cbp-9718/

Penny Sims
Communications and Partnerships Manager

What is Co-production, and is it important?

The Include Champions Group is a lived experience consultancy team, generating ideas, feedback and free accessible resources on important topics. Between us, group members have real world experience in of learning disabilities, autism and other communication needs.

Our latest FREE Easy Read resource is about Co-production. It helps to explain what Co-production is and why Include puts it at the heart of everything the charity does.

What-is-Co-production-FREE-Easy-Read Download

An audio version is on SoundCloud

Working together

Our dedicated Champions Group members meet every week via Zoom, and there is always something important to discuss, analyse and provide feedback on.

Last week we had an invite from Lloyds Bank seeking the input of people with additional needs. This is so the bank can try to design their services with everyone in mind.

We had a special guest on the Champions Group Zoom session last week – Cathy Wood who has joined Include’s Board of Trustees. She said:

“I was delighted to hear that Lloyds Bank are inviting Include members to provide feedback as experts by experience of what it is like to use their services with a communication need.”
Cathy W – Trustee of Include.org

Philip from the Include Champions Group said this;

“It makes us feel happy that they want our help. I’ll feel like I’ve achieved something and the bank is being helpful by asking us.”
Philip – Include Champion

We can help others

The Champions can teach services about their experiences and what helps them to communicate well.

For example, the Champions Group help design training for health professionals, to help them understand how to support people with communication needs in hospital.

The Champions can also help to check documents to make sure they are accessible. For example, the Champions worked with The Samaritans to make sure their flyer was easy to understand.

Trustee Cathy sums up:
“It was great to get more insight into the important work that The Include Champions Group does. Ensuring everyone has a clear idea of what Co-production is, and why it is important is such a valuable piece of work. We hope many organisations and individuals will make use of this Easy Read explainer.”

Please email us on info@include.org if you think you might like some help from The Include Champions Group.

Penny Sims
Communications and Partnerships Manager

Hello…we are the Champions!

Claudia, our new Speech and Language Therapy Assistant, who we introduced you to in December’s blog, has been getting to know The Include Champions Group a bit better.

We’re really proud of the Champions Group because they do some really important things, and we’d like everyone to have a chance to get to know the group better – not just Claudia!

So, our latest FREE Easy Read resource is made by the Include Champions about the Include Champions! It explains what the group does, why and how – all presented in an Easy Read format.

FREE Easy Read: We are the Include Champions Download

FREE Audio format on SoundCloud.

In summary, The Include Champions Group is a lived experience consultancy team, generating ideas, feedback and free accessible resources on important topics including the Mental Capacity Act and Inclusive Communication.

Members have real world experience of learning disabilities, autism and other communication needs.

Dedicated group members meet every week via Zoom, and there is always something important to discuss, analyse and provide feedback on.

Time to Talk Day (2nd Feb), which encourages people to have conversations about mental health, seemed like a good day to re-share two of the Easy Read resources produced by our group:

Kind Communication
Listening Skills

As our CEO Alix says in her guest blog for Browning York; “Today is ‘Time to Talk’ day – a day designed to promote conversation and communication to benefit everyone’s mental health. Let’s also think about the communication which uses more than words to include people – the biggest kindness of all.”

Penny Sims
Communications and Partnerships Manager