My name is Sophia Schwarze and I am a student at the Health Professions school at Samford University in Birmingham, Alabama. In the spring of 2016 I was given the opportunity to study in London. It was my advisor who encouraged me to apply for an internship. Being only a second year in university I knew that finding an internship would be a bit more difficult. Although I am studying to become an Occupational Therapist, it was my passion for working with individuals with intellectual disabilities that opened the door to a small organization called RIX Research and Media.

RIX Research and Media is a company out of the University of East London that uses Multimedia Advocacy and person-centered planning to promote self-advocacy and human rights of individuals with intellectual disabilities. Having done a lot of work in this community I was somewhat aware of the various technologies used to help individuals with communication but ‘Multimedia Advocacy’ and ‘person-centred planning’ were concepts that I had never heard of. When I was first given the notification that I would be interning with RIX I was both excited and nervous. I had never interned before nor had I ever worked in an office.

It became clear very early on that there would be no micro-managing from the staff. On the first day I was given an assignment and everyone went back to doing their own work. At first I felt I might be uncomfortable with this approach but it was this trust and independent environment that really pushed me to become both more confident and more comfortable in my abilities. I never realized how much I relied on the direction and the confirmation of others. Sure I am a perfectionist and I want to make sure that I am doing the work properly the first time but RIX showed me that being confident in one’s own work and abilities from the beginning makes for a more productive and better employee.

RIX provided me with incredible opportunities both in and out of the office. I was given the opportunity to go out on my own and conduct interviews with Wiki users. Although it is primarily used for people with special needs, the Wiki’s function has been modified for a variety of different groups. Recently the Wiki has made its way into the mental health community. Whether it is being used as a personal recovery plan or as a communicative aid, the functions of the Wiki are designed to best suit the needs of the individual. One of my main tasks was to write case studies of individuals using wikis within the mental health field. It was incredible to see how a single product could be transformed to fulfill the personal needs of one individual. Having never conducted an interview before I had a lot to learn but of course with practice comes knowledge and eventually skill. Through the interviews I was able to meet some incredible people and see the Wiki being used in everyday life scenarios. I learned how to ask questions, how to gather material, and how to compose it into an article that truly reflects the individual’s story and feelings.

One of my favorite opportunities was being able to work with Ajay. Ajay, also known as the Wiki Master, is an employee and spokesperson with learning difficulties at RIX. Recently Ajay had been enrolled in a European Computer Driver License course which covered computer software programs such as Microsoft Word, Excel, Powerpoint, and Project. On Wednesday afternoons Ajay and I would go through the modules and quiz questions together talking things through and coming up with fun ways to memorize the material. Working with Ajay was not only fun but it gave me a glimpse into the kind of work I would be doing in the future and I have to say I am pretty excited.

Communication is something we use everyday and often we take it for granted. For those with intellectual disabilities or mental health challenges, being able to communicate can be difficult. RIX has dedicated itself to improving the lives of these individuals by giving them the tools they need to vocalize their thoughts, needs, and aspirations. Whether it is through video, picture, or text, every person deserves to have a say in their own lives and wellbeing.

RIX is something really special. The work that they do and the people they serve says a lot about the kind of people who work within its walls. Although it is a small team, everyone is extremely hard working and supportive. They have taught me so much and they have given me so many opportunities to be apart of something so much bigger than myself. It has only been three months but I am going to miss seeing the people here and I can not wait to see what amazing thing they do next.

On Wednesday 2nd May 2016, RIX Research and Media along with their London Scholars and colleague Darren Sharpe from IHHD (Institute for Health and Human Development) at the University of East London, hosted the first RIX Innovation Lab.

The innovation labs aim to aid in creating a RIX Wiki Evaluation Toolkit. The aims of this toolkit will be to develop a framework to sustain the use and implementation of RIX Wikis, within schools, health and social care services, as well as capture the impact of RIX Wikis within these services.

The day was attended by various professionals from a range of schools, services and local authorities and some great discussion were had.

The event consisted of discussions on the following topics:

  • How the RIX Wiki corresponds with Legislative framework, such as Mental Capacity Act, Care Act, SEND Reforms etc.
  • Why each service/organisation purchased the RIX Wiki?
  • How each service/organisation is using the RIX Wiki?
  • What processes are in place and what are the KPI’s (Key Performance Indicators)?
  • Current evaluation processes?
  • What needs to be evaluated?

The discussions were all very interesting and we will now look to use these discussions to prepare for our second Innovation Lab.

We would like to thank everybody who attended, your contributions were greatly appreciated, and we look forward to seeing you all at our second Innovation Lab!

Another thank you to our Graphic Facilitator for the day Charlie Minnion, who was able to capture all of our discussions in a graphical illustration.

Santino Vassell is an associate peer recovery trainer at CNWL’s Recovery and Wellbeing College. He teaches a course at the college working with individuals with mental health and learning difficulties and he refers to this as his first real job. Santino is able to offer a unique perspective in the college as he himself has a learning disability as well as a mental health disability.

Santino was first introduced to the RIX Wiki in the summer of 2014 by his friend and Deputy Manager at the college, Amanda Bailey.

“At first I thought it was going to be really hard,” Santino says, “but I’m really enjoying it. The Wiki is simple and straight to the point.  It’s interactive and easy to use.”

He attended a two-week Wiki Builder’s course with two of his fellow recovery trainers. Santino enjoys the person-centred structure of the Wiki and says that this makes it easier for people with mental health and learning difficulties to express themselves. He describes a Wiki as a story about you, told by you. “You can put your own pictures, your own writing, and you can even put your favourite songs on it! It’s a fabulous and brilliant tool.”

The Wiki is entirely owned by the user and he or she can choose who else can see the Wiki, and whether they see either the whole Wiki or only a specific section or sections.  “I also like that the Wiki is completely private and only the people I want to can see it, so it can be used to communicate with doctors and other professionals,” he adds.

For Santino, the Recovery College has not only given him a new beginning, but a job that he loves and allows him to do what he is most passionate about – helping people. The Wiki is a tool that helps Santino to do his job. “Using my Wiki helps me to express myself to other people. It helps me to encourage and support others. I have a Wiki so that I can help people like myself.”

Bexley Voice Wiki shows its power of communication at a DfE event

Bexley Voice For Special Needs Children (BV) is small charity, comprising volunteer parents and carers, which supports families of children and young people with special needs and disabilities age 0-25. We offer a programme of visits to all the schools in Bexley as well as meeting with professionals and our Local Authority. We generally have two volunteers attend.

At BV, we have been piloting the use of a RIX Wiki for our own forum, to help us with the visits and presentations, and have been delighted with the results. As parent volunteers, we often have ’emergencies’ where one person is unable to attend. By using a Wiki, we can be confident that we are presenting the correct and full information, without the need for a second person to be present.

With invaluable support from Sam Goncalves, one of our parents, the BV Wiki has enabled our team of volunteers to offer more detailed information to our parents and carers at the touch of a button.  There is so much information that we need to give out and it’s not always possible to retain it all.  This way, the volunteers know that they can visit schools and go to meetings, and present all the information accurately, for example, on the SEND Reforms, EHC Plans, all about Bexley Voice membership, support organisations and benefits advice. We can spend less time training the volunteers to present to schools, as the relevant information is already there to show to the parents or professionals. We also find that it’s more engaging for parents to watch the different short videos, rather than us talking for two hours!

Recently, our forum Wiki helped us with a real challenge.  As BV is a member of the National Network of Parent Carer Forums (NNPCF), we were asked to create a new private Facebook Group to enable the 32 London NNPCF forums to share information. As part of this project, we were invited by Contact A Family to showcase a presentation at the Department of Education to all of the London forums and professionals from the DofE, all about the new Facebook Group.

Both myself and Juli Atkinson (BV Parent Coordinator) were extremely nervous to say the least, at the thought of presenting to such a large audience of professionals. We were concerned about missing out vital information to ensure the network of forums understood how to use the new Facebook Group. As we are all parent/carers experiencing similar issues, we wanted to be informal and relaxed but also be professional and informative. So it was suggested that we add a new section to our forum Wiki; a great way to introduce how we at BV are involved at a regional level.

We enjoyed filming the Wiki information sections, especially being able to do re-takes so that the information was correct.  Using video clips to explain the various sections (showing me at my computer) was much more visually engaging.  And knowing the exact timing of the presentation also helped with the planning of the day’s agenda.

Once the Wiki section about the Facebook Group was set up, both Juli and I were much more relaxed.  Just knowing that if either one of us was unable to attend or got ‘stage fright’ on the day, that it was all prepared beforehand made such a massive difference to our presentation. The Wiki was very easy to use, just a few clicks and we were able to sit back and watch the audience’s positive reaction.

It was so well received, we had great feedback from many attendees and we would certainly use a Wiki for many types of presentations in the future. It is easy to use, fun to film, can be updated regularly if required and takes a lot of stress out of presenting!  We even have a video from a Local Authority professional on there now talking about our forum’s valuable contribution.

Thanks to Sam and the Wiki, which really did make such a difference!

RIX Research is working with the Foundation for Research and Technology Hellas (FORTH) in Greece on a new, two-year project funded by Erasmus+ KA2: Co-operation for Innovation and the Exchange of Good Practices. The project, called Puzzle, is a Strategic Partnership for adult education and also involves agencies from Sweden, Poland and Lithuania.

Currently, adults with intellectual disabilities (ID) in these European countries have fewer opportunities for education and training or for participating in the social and economic spheres of life. This is partly because much of the existing educational text has not been adapted to the specific needs and language skills of adults with ID, so that it can be easily understood. There is also a low take-up of suitable digital tools to support learning with adapted materials, both because the educators are not aware of the availability of such tools nor do they have the knowledge and skills to use them effectively.

The Puzzle project brings together the particular knowledge and experience of each partner agency to address this issue. The Swedish agency, MTM, is expert on the use of the ‘easy to read’ method, which facilitates the transformation of text into forms that are easily understood by people with limited capabilities in reading. Their expertise is being combined with that of RIX Research, which is a pioneer in the inclusive development of accessible digital media tools to support people with ID. Greek agency FORTH, which has extensive experience in the development of related applications, will contribute further to the work.

Puzzle is now well underway. An international team of 12 education professionals from Greece, Poland and Lithuania is being trained by the MTM specialists on the ‘easy to read’ method and by the RIX Research specialists on using innovative technology platforms as the main way of disseminating ‘easy to read’ material. Everyone came together in February, for a week’s concentrated workshop held in London, at the RIX offices at the University of East London’s Docklands campus. The workshop was a great success as the participants explored how the quality and accessibility of information provided to people with ID can be improved.

Richard Lohan, accessible information officer at Camden Council, was a guest tutor at the workshop. He presented on the exciting work he is doing in Camden to promote the use of photosymbols in easy read information. Richard uses photosymbols in Camden’s exemplary wiki portal, which details many of the information and support services available to people with ID in the borough (https://www.rixwiki.org/camden/all-our-wikis/ ). Camden has also found a way of embedding their wikis in their local offer website in order to reduce the number of external links on the page.

Richard said: “Creating and using images is a key part of presenting information in an accessible, easy read format. In Camden, we are working with local people with intellectual disabilities to create local photosymbols that have real meaning for those living in the area. It’s a great example of co-production.”

The Puzzle project will also see further research, led by Poland, on assessing how adults with ID in Greece, Poland and Lithuania access information on their human rights and their difficulties in understanding the written information. The research will lead to the development of an e-learning platform and mobile application, with information and learning materials on human rights issues produced in ‘easy to read’ format. This will then enable the design and testing of a series of ‘easy to read’ lesson plans to help people with ID understand their basic rights, for example in employment, housing, social integration and education

The active participation of people with ID in the research to create the ‘easy to read’ text and accessible web platforms is critical. By working directly with the ID community on the design and production of the information, the researchers will achieve the best possible output and ensure that people with ID can communicate effectively about themselves and their rights. The expertise that RIX Research has developed in Inclusive Research Methodologies will also help the research team to gain confidence in taking a co-production approach and exploring how to develop this further.

The implementation of Puzzle will motivate and encourage professionals and organisations in the field to develop their skills and widen considerably the learning opportunities of people with difficulties in reading comprehension. Important information and educational course materials available in ‘easy to read’ formats, on accessible digital applications, will be free for use by any person with ID and difficulties in reading comprehension in each of the countries.

Another training workshop for Puzzle is set to take place in November, hosted by the Lithuanian agency, Jaunuoliu Dienos Centras, in Panevezys. RIX Research will present the digital platform and app that it is currently developing, as part of the resource set of accessible media tools that will be made available across Europe.

Andy Minnion MBE, Professor of Media Advocacy at RIX Research & Media, said:

“There is so much excellent work being done around the world to drive positive change in the lives of people with ID and their families. Enabling people with ID to learn about, and understand, their human rights is fundamental to their ability to move towards ever greater levels of self-advocacy, self-determination and independence. I’m incredibly proud of the work that we are doing at RIX at the forefront of this change.”

Project number: 2015-1-EL01-KA204-014123

Useful websites:

www.rixresearchandmedia.org

https://www.forth.gr/

http://www.mtm.se/english/

http://www.pjdc.lt/

http://www.smialek.org/

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