Автор: Richard Lohan

As Phase 1 of the Rix-MATICS project draws to a close, we thought we’d share some of the findings from this six-month feasibility study.

The project worked with participants in the South West to trial the use of the Multi Me software platform across different sites as a way of sharing About Me information with integrated care services. The project’s aim was to find out how we could develop our software to complement integrated care provision and, at the same time, promote person centred practice.

These findings were captured as recommendations in the Rix Research project report submitted to the project funders.

We will be sharing these recommendations in due course as we map out our development pathway.

Throughout the project, we explored the potential benefits of using the Rix Multi Me software as a bridge between people with learning disabilities and autism, and the integrated care services they use. We could not have done this without the participation of our project partners, Havencare and Livewell Southwest, as well as our Inclusive Research team at the Rix Centre.

By using Multi Me to share practical solutions, provide easy read information, facilitate diary recording, send reminders and prompts, and integrate information into specialist consultations, individuals with disabilities can actively manage their health and well-being during the long waiting times that some services are experiencing. This can improve people’s engagement, self-care, and overall health outcomes, while also addressing the issue of long waiting lists.

As we await feedback from our funder we are keeping our fingers crossed that we are given the opportunity to move into Phase 2 and implement our extensive software development plan.

Find out more about Rix Multi Me software

 

Rix-MATICS is part of the SBRI Healthcare Autism & Learning Disabilities Competition for development funding. Phase 1 ran from Nov 2022 to April 2023.

SBRI Healthcare is an NHS England programme that looks at new technologies that could enable the NHS to access innovations that solve unmet needs. SBRI stands for the Small Business Research Initiative.

We’re excited to announce the latest Rix Wiki upgrade, scheduled for late spring/early summer, and we thought we’d give you a sneak preview of some of the improvements you will see in the new version.

More speed

Our software is getting a serious speed boost and your Wiki will load much faster.

More personalisation

You’ll be able to choose from new colour themes to reflect your own style.

Easier to use

You’ll notice small changes that make your Wiki even easier to use. Easily create new sub-sections in your Wiki, move slides between Wiki sections, and lots of other improvements.

More media

Our new Wiki lets you record audio directly into your Wiki. You no longer need to use audio software like Audacity or other sound recording equipment.

You don’t need to do anything for now, just keep an eye out for emails from Rix in the next few months advising you on next steps.

Existing privacy policy and terms and conditions will remain unchanged.

Other news

We’re joining forces with Multi Me and, for an additional charge*, Rix Wiki users will soon be able to add any combination of the following Multi Me tools to their Wiki

• Calendar – syncs with Goals to help you keep on track
• Goals – a step by step approach that helps you get things done
• Circle – build your own online circle of support
• Diary – a great place to record events and share media
• Media – all your media in one place so nothing gets lost

*There will be a special introductory rate for existing Rix Wiki customers

Learn more about the Multi Me tools here

We are more than halfway through our Rix-MATICS project, a six month feasibility study looking at how the About Me information of people with learning disabilities and autism can be shared across Integrated Care Services using the Multi Me software platform.

The project is on track and going well, and together with our project participants from Havencare and Livewell Southwest, we have been developing some great ideas to improve our software. We have agreed, for example, that by having a suite of Multi Me apps built for mobile, we could make self-advocacy even more accessible for people with learning disabilities, especially those who would benefit from assistive technology features.

We have also been looking at how we can develop dashboards for professionals so they can access important About Me information. This will enable them to provide care in a more person centred, streamined and efficient way. These developing ideas have the potential to improve the quality of care and enable people with learning disabilities to have more control over their support.

Our Wiki Master, Ajay Choksi, has been co-running sessions with people with learning disabilities and their support workers in Penzance, and they have also given us lots of ideas for improvements, with Multi Me smartphone apps being at the top of their list. Charlie Levinson, Multi Me director, observed how inspired participants were by Ajay’s presentation of his own Multi Me and Wiki, as they witnessed the power of self-advocacy in action.

At Rix and Multi Me, we believe in working collaboratively with people with learning disabilities, their families and the people who support them, and this is always front and centre in our software development, training and research.

If selected for Phase 2 of the SBRI Healthcare programme, we will have the development funding to turn these ideas into new exciting software features that we hope will improve care and wellbeing across the Integrated Care Systems in the South West.

This work was commissioned and funded by SBRI Healthcare. SBRI Healthcare is an Accelerated Access Collaborative (AAC) initiative, in partnership with the Academic Health Science Networks (AHSNs). The views expressed in the publication are those of the author(s) and not necessarily those of SBRI Healthcare or its stakeholders.

The Rix-MATICS project is a six month feasibility study looking at how the About Me information of people with learning disabilities and autism can be shared across Integrated Care Services using the Multi Me software platform.

The study will be focusing on the integrated systems in the South West and, in particular, Plymouth County Council. Project participants will be people using the support services of local care providers Havencare and Livewell Southwest.

The project’s aim is to find out how we can develop our software to complement integrated care provision and, at the same time, promote person centred practice. Our goal is to make the software both easier to use and easier to implement within integrated care systems. We hope to be able to show how using a person centred approach alongside digital tools can make integrated care more effective in meeting health and wellbeing outcomes for people with learning disabilities and autism.

Our feasibility study will consist of ten case studies of people using services at Havencare and Livewell Southwest. We will work closely with service users and their support workers and integrated care professionals. If the study is successful we hope to scale up the project and work with all the people with learning disabilities and autism who use these services.

Rix-MATICS is part of the SBRI Healthcare Autism & Learning Disabilities Competition for development funding. Phase 1 runs from Nov 2022 to April 2023.

SBRI Healthcare is an NHS England programme that looks at new technologies that could enable the NHS to access innovations that solve unmet needs. SBRI stands for the Small Business Research Initiative.

This work was commissioned and funded by SBRI Healthcare. SBRI Healthcare is an Accelerated Access Collaborative (AAC) initiative, in partnership with the Academic Health Science Networks (AHSNs). The views expressed in the publication are those of the author(s) and not necessarily those of SBRI Healthcare or its stakeholders.

To celebrate #purplelightup for International Day of Persons with Disabilities, Kate Allen writes about purpleSTARS, a team of artists and technologists with and without learning difficulties and disabilities (LDD). They work with museums and heritage sites to make displays appeal to all of our senses.

Nothing about us without us

On Thursday 29 September 2022, members of our Surviving Through Story group, Ajay, Paul, Terry, Vicky, Gosia and Kanchan, took the train to Brighton.

It was a bittersweet moment. On the one hand we were eager to visit ‘Lockdown the Lost Years’, an exhibition by artists with learning disabilities supported by Brighton & Hove Speak Out, a local independent advocacy group. On the other hand, it was a poignant moment, as this would be the last time that members of the Surviving Through Story group would meet as the project officially came to an end.

Our train journey was full of energetic chatter. It had been a while since we had all come together and seen each other in person post Covid. Some of us had only seen each other online, self-contained in rectangular boxes on Zoom or Teams. It was lovely seeing that people actually existed outside the virtual world!

Ajay helped us navigate the streets of Brighton to find the Jubilee Library. We were very happy and excited to meet members of Brighton & Hove Speak Out, Danielle, Sarah, Emily, and Noelle, a freelance researcher.

We really enjoyed looking at the memory boxes and scanning the QR codes to hear the evocative stories of the artists who had created them.

All of us were really touched by these memory boxes. They gave us a glimpse of what that person was feeling and thinking at the time. The memory boxes showcased that life during Covid was hard and challenging but also that people had hope and resilience.

Most of us thought Hannah’s memory box was the most stirring. On the outside it was beautiful and bright with colourful butterflies. The inside of the box provided a stark contrast, showing her as a prisoner in her own home.

However, Susan’s memory box was full of hope and happiness. It had beautiful, colourful thread work depicting flowers and a butterfly.

After viewing the exhibition, we all went out for lunch. We talked about our hope that we would get the opportunity to work together again soon.

We ended the trip by taking a stroll through the tranquil Pavilion Gardens, a lovely end to our visit.

The project, ‘Covid Stories from the Learning Disability Community’, has collected the stories of 25 people with learning disabilities during the Covid pandemic and the recovery phase. Click below to see the stories.

Kanchan Kerai, The Rix Centre

Covid Stories from the Learning Disability Community

Surviving Through Story

 

Preparing social work students for practice by involving young people with profound and multiple learning disabilities in teaching and learning

This recently published article (see below), co-authored by Gosia Kwiatkowska from Rix and Kathryn Stowell from Charlton Park Academy, describes the Advocacy Pathway for social work students at UEL and looks at how the Rix Multimedia Advocacy model benefits students with profound and multiple learning disabilities (PMLD) as well as trainee practitioners.

The Advocacy Pathway

In 2018 a new Capabilities Statement was produced by the British Association of Social Work, BASW, highlighting the need for social workers to develop robust advocacy skills based on values, ethics, personal behaviours, knowledge, skills and interventions, through critical reflection.

To support people with lived experiences, social workers need to:

• get to know people with lived experience as individuals
• listen and know how to communicate effectively
• support their family and friends
• help them lead the lives they choose
• show respect and treat them as equal citizens

The Advocacy Pathway is a 12-week programme during which social work students are paired with a young person who has lived experience of PMLD.

The aims of the pathway are twofold: to equip social work students with a new set of skills and to empower learners with the lived experience of PMLD to build relationships and provide opportunities for them to be listened to, respected and included.

It makes you discover who you are, it helps you grow as a person and learn about people’s individualism, that people regardless of whatever challenges they might be facing, they have dreams, they have aspirations, they know who they are and what they want out of life, and I think it is just an enriching pathway where you learn to grow. (social work student, 2019)

Following 20 years of research and development, Rix have established a new way of working with people with lived experience of learning disability using multimedia, called Multimedia Advocacy.

The Multimedia Advocacy approach is based on the values and principles of person-centred practice, and it supports collaboration between the person with the lived experience, their family, and education, health and social care professionals.

Multimedia Advocacy learning resources are available for free on Open Learn Works platform within our course Multimedia Advocacy: Making Plans with People with Learning Disabilities

Multimedia Advocacy learning resources

Through active listening, and observation I have learnt to realise all behaviour is also communication. (social work student, 2022)

We were hand-picked by the Mayor of London’s Commission for Diversity in the Public Realm to deliver a training workshop for heritage practitioners to share our expertise and support them to develop their walks, talks and tours to be more inclusive and accessible for wider audiences.

We were really excited – not only would our workshop be part of a day organised to celebrate London’s community heritage practitioners and the launch of their new website, it was also going to be held at a place very close to our hearts, the Museum of London.

Being passionate advocates for London and London’s heritage, we were all motivated to start thinking about how we could deliver our workshop in our unique purpleSTARS way.

We identified what we felt were essential nuggets of information to share, our top tips for a more accessible and inclusive talk and tour. We created a public Wiki and an easy read version of our top tips to accompany our workshop.

Top Tips Wiki

The group thought it was important that heritage practitioners think about how to make a walk, talk or tour, sensory and interactive. A sensory bag containing items relevant to a particular walk, talk and tour would be the most practical solution.

The purpleSTARS members presented their top tips at the workshop, during which practitioners were able to look at, listen to, touch and smell different objects.

Practitioners were then invited to create their own sensory bag. To get their creative juices flowing, purpleSTARS showcased the bags they had made. A member of purpleSTARS supported and facilitated the seven practitioner groups and shared ideas on the types of items they may want to include, like scents, objects, edible items, photos and audio clips.

The heritage practitioners enjoyed creating their bags. There were lots of discussions and questions asked around how they could make their walk, talk or tour include sensory elements. It was fascinating to hear the practitioners, who run a walking tour of the Welsh Harp in Brent, discuss, whilst working on their bags, how to include smells and items to touch as part of their tour.

It was encouraging to hear that our top tips had clearly been taken on board. The delegates who were presenting after us, acknowledged that their slides were not in easy read, were not clear enough and contained jargon. It was reassuring to hear that they would bear these top tips in mind for future presentations.

“You were all amazing, your presentation, practical session and the members were brilliant, you made this event a real success.”
Vanessa Ansa, Producer, London Heritage Walks & Tours

As part of the Mayor of London’s Commission for Diversity in the Public Realm, there are a series of free walks and tours taking place between July – November 2022.

London Unseen free walks and tours

purpleSTARS website

Kanchan Kerai, The Rix Centre

Our recent Transitions event was an opportunity for members of the Rix Multi Me community to share the stories of how they have used our software.

Andy Minnion, Rix director, started things off by placing the event in the broader context of a Rix Multi Me community of practice that would meet every few months to share ideas and showcase examples. Today’s theme was Transitions and Andy reminded us of the importance of giving people a voice

When change comes along, that’s when it’s extra-critical that we’re genuinely listening to people with learning disabilities, with autism, with support needs. We need an account of people’s lives that’s in their own voice, and that’s where our tools and the multimedia advocacy approach can come to the fore.

Jeannie Donald-McKim and Joe Darko from Abingdon and Witney College talked us through the story of how Joe had used a Rix Wiki at school before moving on to college where they use Multi Me. Joe will soon transition into the community. Here is a shortened version of their presentation.

Another highlight from the event was David’s story, as told by his mum Rosemary. David’s transition involved moving house and having a new care provider,

Dawn Chatfield from MacIntyre Care was then invited to share her reflections on David’s story from a care provider’s point of view.

David’s transition has gone really, really well… a lot of it is due to using the Multi Me and all the information that mum’s provided for the new staff. The progress David’s made has been remarkable.

Charlie Levinson, Multi Me director, gave us a guided tour of the Набор инструментов Rix Multi Me that David and Joe use and Craig Wilkie from the Rix team finished off with an introduction to Rix EasySurvey, our accessible survey software.

Watch the full event here

A big thank you to everyone who attended Moving On Up!

On Wednesday 4 May 2022, we came together at Stratford Campus to take part in the Multimedia Advocacy graduation event.

This was the first time, in a very long while, that we’d had the opportunity to dress up, meet face to face and celebrate achievements in a large group. There was much excitement in the lead-up to the event and during the graduation ceremony itself.

Attendees included staff and people with a lived experience of learning disability and autism from WEL Enterprise and Airthrie Homes, UEL Social Work students, our Rix inclusive co-research team, and staff from Digital Unite.

The first certificates to be handed out were for Taking part and completing the advocacy pathway and developing multimedia skills. These were awarded to people from Airthrie, a residential home, Link Place and Woodbine day centres, part of WEL Enterprise.

The happiness, joy and tears of the new graduates on receiving their certificates was a truly inspiring to witness. It made me realise that people with a lived experience of disability do not often get the opportunity to celebrate their achievements, be these big or small.

The Airthrie residents volunteered to present certificates to the UEL Social Work students for Completing and participating in the advocacy pathway placement. Our social work students had been working closely with students at Charlton Park Academy, residents from Airthrie Homes as well as people attending WEL Enterprise day centres, to help them develop their person centred Wikis.

Last, but not least, certificates were presented to our very own inclusive co-research team in recognition of how much they have developed their multimedia self-advocacy and research skills and for taking part in the Digital Unite Aspire Project, becoming Aspire champions in the process.

The atmosphere during the whole graduation event was electric. The jubilation and delight on peoples’ faces as they met, clapped, cheered and spoke with each other after the graduation was wonderful to behold.

Kanchan Kerai, Rix team member and senior administrator at Rix Research & Media

Moving on up – using Rix and Multi Me software to support smooth transitions

This is a free online event for education, health and social care professionals, and families and carers, with opportunities to ask questions and share best practice.

• Thursday 16 June 2022
• 11am – 12.30pm
• Online via Teams

Transitions can be exciting moments of change in our lives. They can also be times of great anxiety and turbulence, which can have a negative impact on wellbeing and confidence. This event explores a range of real-life transitions and demonstrates how the Rix and Multi Me tools have been used to support people through these challenges and help make transitions successful. Delegates will have the opportunity to ask questions and gain expert advice from professionals and carers who are already using these innovative tools to help navigate through periods of change in the lives of the people they support.

Outcomes of our event

• Learn from practitioners, families and carers who use Rix software to manage successful transitions
• Find out how the Rix Multi Me toolkit can support transitions for the people you support
• Network with experienced professionals working in the education, health and social care sectors
• Connect with carers and service users to hear how they use the Rix software effectively
• Special offers for attendees including free software advice slot and free trials of our software

Please see below for the full agenda.

You can book a place at this free event via Eventbrite.

Please share this invitation with colleagues within and outside your organisation.

Register here

Повестка дня

We met with Kayla Milner, Payton Wemert and Letty Thym to find out about their experience as Rix interns on the CAPA programme.

What were you doing before you came over to London as Rix interns?

PW
I was on track to be a double major in marketing and economics and I was also interning for a nonprofit. I’m profoundly deaf and I have two cochlear implants. Growing up I’ve always been integrated into what we would call mainstream society. I went to mainstream schools, did very well, but I’ve always had a heart for the disabled, a heart for the people that have a lack of communication. I feel like there’s a lack of awareness and a lack of understanding around disability and I’ve always wanted to bridge that gap.

KM
I’m a second year student at Samford University and I’m currently studying psychology and neuroscience. I’ve loved having this experience here just to help me figure out where I want to specialise in the future.

LT
I go to Hollins University, which is an all women’s liberal arts school in Virginia and I am majoring in psychology. I’m very interested in child development and I’m playing with the idea of maybe doing research or maybe going through down the counselling for adolescents and children route. I really enjoyed this internship because I myself have a mild learning disability. I have slow processing speed, my brain does work differently than other people and I take more time to do things.

What it was like for you when you first sat down and worked with and communicated with people with learning disabilities?

LT
For me, I immediately went into that role when I’m with children, where I’m excited to be with them and to see their unique traits and get to know them. When I sat down with Danny, it just felt very natural for me and I really admired the different ways he communicated – I was excited to get to know him so it was enjoyable for me.

KM
I don’t particularly remember my first one, but I think my favourite one was when Payton and I had lunch with Kieran, one of the co-researchers. She’s so much fun and she’s a lovely person and I just really enjoyed getting to know her a little bit more on a personal level.

Did you find that you had to modify your communication to make sure that there was understanding between you?

PW
I think I’m always adjusting for conversations for anybody who I talk to, in terms of the level of conversation that we’re having, the different tones of conversation. But when talking to a person with learning disabilities I always take care to be aware of context, contextual clues and asking them questions about themselves first so that they feel comfortable to share, but I try to treat it like any other conversation and I think that’s the most important part. With the Rix Centre, my first experience was actually working with Ajay on the Rix Wiki. I didn’t realise that we also employed people with learning disabilities and I think that’s a true reflection of the Rix Centre in terms of how we want to include them and work with them.

What will you do next and what is the biggest take away for you?

LT
Hopefully I’ll be doing an internship this summer and then I’ll probably also be working. My biggest take away is that I learned so much about how neglected people with learning disabilities are in America. It’s given me a bit of a spark to do more research on what the initiatives are in terms of accommodations for individuals and maybe trying to see if there are any nonprofit organisations working on changing these issues, and what the picture is state to state. But yeah, that’s my take away, how important it is what y’all are doing and how important it is to see if it’s being done in America.

KM
So this summer, I’m working as a camp director at a camp so I think that’s kind of like my next plan. I’ve loved working here because I’ve been involved in such a broad range of activities and projects. My biggest take away is learning how to work in a team, work with different interns and also work with the co-researchers. We’ve done a lot of analysis and I’ve really enjoyed that and I’ve enjoyed being creative and getting to work at Charlton Park – I feel like I’ve learned so much over the past few months .

PW
When I get back home I’ll be hanging out with family, doing courses and then I’ll be back up at Samford University in the fall. This internship has given me a renewed interest in what I wanted to do. This is the type of work I want to be doing and I’ve gotten a lot of business opportunities through Craig with the SWAT analysis and building the social media platforms and it’s renewed that spark of marketing, promoting, including and spreading awareness.

Can you tell us about your first experience working with or observing the children with profound and multiple disabilities that you met at Charlton Park Academy?

PW
I was very impressed with how quick they are. Once you give them the tools to succeed, they can go figure out the next step. I sat in on a data class and they learned how to code. They were making things above my level and I felt very honoured to be in the room with them.

KM
One of my favourite experiences was when they were playing Red Light Green Light and whether they were in a wheelchair or could walk or were using a walker, they all participated in that game and I’ve just never seen anything like that. I caught myself thinking, this is really what community inclusion is, including them all in the game and not leaving anyone out.

LT
My main impression of the technology was that this stuff needs to be more available to people. Using Eyegaze, one student could use his eyes to communicate and he was able to do everything they were asking the class to do. In America, you see these children who don’t have access to that and aren’t able to be included in the same way.

Why would you recommend having a placement at the Rix Centre?

PW
Interning at the Rix Centre provides you with support and encouragement to reach out and communicate with people with all levels of learning disability, as well as with co-workers. I’ve had Letty and Kayla throughout this semester and we’ve been able to really reflect and kind of walk with each other and learn from each other. I think it’s very important to have this experience because it helps you adjust your expectations for community conversations later on in life, whether that’s with a stranger or family or a lifelong friend.

KM
I think the biggest thing that I achieved here was learning to communicate and learning truly what inclusion is because I feel like you guys do inclusion so well. Having the co-research team and having people with learning disabilities on the team here, it’s like a microcosm of what the world should look like. I had never really been exposed to too much of this before. Usually people with special needs or learning disabilities are separated from the mainstream schools and I think, with the right technology and the right resources, we can truly achieve a fully inclusive community. Interning at Rix teaches you how to work in a team, communicate with others, develop new skills in research and database analysis and learn about inclusion and people with learning disabilities.

LT
I think it’s really important to intern here so that you’re more informed and you will be inspired to take what you’ve learned back to America because people need to know about this.

At Rix, we see interns and students as little seeds. What would be that little seed that you will plant?

KM
In my perfect world there would be someone with a learning disability speaking at every level of government, maybe starting in school councils in the US. I would like to start promoting that, including them in every level of life.

PW
We had a conversation about diversity at the very beginning of the internship and I think it goes for more than just learning disabled people, but also just increasing awareness and just keep talking and sharing about it. Also, photography is one of my hobbies and working at Rix has inspired me to do more with that and use it to share stories of people and as an outlet for people to express their feelings.

LT
I’m interested to see what America is doing because I don’t think they’re doing enough. And you know, I’ve been through that – I’ve seen it in the school system. I see myself doing policy work and trying to create change for everyone at a federal level because it’s so hard at the state level because states do not communicate with each other. And I’m interested in seeing what technology is available in America as well.

A big thank you and all the best for the future to Kayla, Peyton and Letty

We spoke to Ajay Choksi, member of the Rix team and peer support champion, about his work at The Rix Centre and his interest in research

Ajay, please tell us a bit about yourself

I have an intellectual disability and I’m passionate about digital inclusion, accessibility and design. I’m really interested in using different devices like my iPad, smartphone and laptop.

What do you use those devices for?

I make photo collages and do graphics work and video editing. I take photos and video on my iPad and use these to tell my story. I add them to my Wiki to inspire people.

Что такое вики?

A Wiki is an easy-build website. You can add photos, video and sound to tell people about yourself, your hopes and dreams and anything else you want to share with others.

Who can see the Wiki?

You can invite people to view your Wiki by using the Invite button. I share my Wiki with other staff, social workers, service users and others by sending them an invite from the Wiki software. I also share my Wiki on screen during meetings and presentations and when I’m teaching other people how to build their own Wiki.

How does it feel to share your story with other people?

It’s important to share my Wiki, it makes me feel proud and confident because I am speaking up and working on my advocacy and leadership skills.

Why is that important?

So that other people can see how they can speak up for themselves with their stories. It’s an easier way for people with learning disabilities to be heard and to have a voice.

How many Wikis do you have?

I’ve built lots of Wikis.
Ajay Advice 3 is about me and has advice about being independent.
I use my Research Wiki to help me learn how to be a researcher – it has lots of information about the different Rix Research projects I’ve worked on.
I use my Advocacy and Leadership Wiki to keep a record of my learning and skills development in these areas.
We also have project Wikis like MYS (Me and Your Stories), Aspire (Zoom training) and purpleSTARS (Museum of London).

Where can we see examples of your Wiki work?

There’s a link to Ajay Advice 3 below and you can also check out the Me and Your Stories (MYS) Wiki. Me and Your Stories is a European partnership project all about storytelling and how we can use digital devices and special software in the classroom to capture and share our stories.

Ajay Advice 3

Me and Your Stories