Ben le koala
Disability is everywhere, so are the difficulties to ensure the rights to access healthcare and services. Due to chaotic referrals and problematic patient care, life expectancy in the disable population is lessened, notably by 10 years for people with autism who often also have co-occurring conditions.
About 1 in 100 children is born with autism and a recent study showed that 80% of behavioral disorders affecting people with autism may be of somatic origin and less than 30% of pain are assessed among those who have difficulty communicating. Results of the study “Indifference or hypersensitivity? Solving the riddle of the pain profile in individuals with autism,” have been published in the journal Pain and indicate that in most cases, the sensitivity to pain of people with autism is higher than that of most of the population, while they are unsuccessful at effectively suppressing painful stimuli
Health personnel and families are at loss, feel powerless, don't manage to understand the person and his/her behavior. Children with disabilities and their families may overburden already stressed health systems.
Children with autism pay a high price as they experience isolation, discrimination, school failure, drop out ( According to parents associations, 80% of children with autism don’t go to school in France and many schools around the world are not designed to be universally accessible) and higher health risks.
Their family as well,, especially mothers. For 2/3 of mothers with a child with disability there will be an impact at work and risk of separation (study March 19th 2015, Limousin France). Indeed half of the single mother of a child with disability recognize the handicap as a factor of separation. Mothers, and parents in general, experience higher risks of stress, mental disorders and violence.
It is vital to propose early childhood intervention to support the children , the families, the specialized and health workers. Early childhood intervention, especially in prevention, are insufficient currently and thus children will develop into adults with chronic diseases and other important health problems.
Today the health costs are too high due to this situation and inadequate prevention measures that could reduce future costs if needs and risks would be addressed.
As the World Health Organisation states : « Care for people with autism needs to be accompanied by actions at community and societal levels for greater accessibility, inclusivity and support »
There is not enough health tools created and designed with and for people with autism and for people with disability. During sanitary crisis, new challenges arise for children with autism and their circles as they lack specific communication, teaching materials and tools to develop new skills.Another audience is targeted by our projects : fMigrants and refugees from outside the EU region to the European countries. Arrivals complexify Healthcare services in response to complex and evolving individual needs. Barriers to accessing healthcare are identified and include languages and literacy. Professionals and social keepers need tools to react rapidly and efficiently
Ben le koala is an innovative technology-powered solution that supports health prevention and access to Health system for kids with autism (2 to 6 y.o.) by introducing free of charge pédagogical material. We work on key hygiene, prevention and care gestures in forms of video, print & play, advices for parents. Booklets, …
Ben le Koala is an animated character who teaches gestures to children by mimicry. Ben makes gestures and the child learns by imitating him: he is the friend of learning and access to autonomy for children from 2 to 6 years old and especially the ones with autism.
It plays a role in facilitating access to health care by :
proposing codesign to the different actors, with the social inclusive design methodology, to identify needs in terms of access to health and invent new pedagogical material
Its easy use and its universal design that makes it efficient on a wide range of audiences
Its ability to adapt fast and deploy good practices widely. The application concentrates all tools so that new thematics can be added when new diseases and sanitary crisis arise like in the case of covid when Ben managed to include shielding measures
Its ability to enhance the collaboration between the different actors around the kids (families, healthcare providers, teachers, medics, …)
People are empowered and their knowledge recognized.
Ben supports families and professionals in accompanying the development of the child, to encourage his/her fulfilment, to help him/her perceive his/her potential... and simply to grow up!
The application shall allow the monitoring of the child's learning to personalize the experience and highlight the child's progress, even if it is minimal, to the educational community (parents, relatives, professionals). A Parental guidance includes tips to the parents in the app and the project proposes webinars with professionals.
Ben le koala can be developed in various contexts.
For more details on the already developed tools :
-30 imitation-based educational videos available for free on 3 mobile apps and YouTube
-Additional paper materials are available for free on the website www.ben-le-koala.fr :
Educational tools for children (print & play)
Guides for parents and professionals
https://www.youtube.com/watch?v=9Ricdoscp7Y
https://www.youtube.com/watch?v=cTRIibCD_70
https://www.youtube.com/watch?v=IOw_rhuJj8Y
https://www.youtube.com/watch?v=N_gKy-P69RU
https://apps.apple.com/fr/app/apprendre-avec-ben-le-koala/id665193100
https://play.google.com/store/apps/details?id=fr.btld&gl=US&pli=1
The Council of Europe has now declared the lack of support and shortage of support services, socio-economic injustices, difficulty in accessing housing and health care, but also the refusal of schooling in France. The freedom and dignity of people with disabilities are hindered, their rights are violated by the French state.
Autism spectrum disorder (ASD ) contributes to significant social (quality of life) and economic impacts (lifetime cost USD1.4 million and GBP0.80 million assessed in USA) that increase with ASD symptom severity. The families with people with autism experience various inequities.
As explained already above, children with autism will face many difficulties in accessing health care and will not experience adequate quality health services
Families will have difficulties in taking the children to the different health care providers
Indeed healthcare providers often experience difficulties not only in diagnosis and management of individuals with autism spectrum disorder (ASD), but also as they have no or little knowledge about possible ways to overcome barriers in ASD patient interactions in healthcare settings. Families and providers are unprepared to use specific tools, for exemple to help the child behave during the waiting period at the health centers.
Children and their families face important stigma while trying to access, are refused access as the provider fear being unable to manage the patient.
There is no statistics on migrants with disabilities arriving in France, none on Ukrainian children with autism. Autism is assessed at 1% in Ukraine as worldwide, so about 440 000 ukrainian people may live with autism. Autisme-Europe alerts about their situation in this time of war and as they seek asylum. Children with autism and their families are said to be neglected by humanitarian agencies, as the nature of their disability is not understood and seen.
Our solution Ben le koala helps building resilience in health systems to allow them to better prepare for welcoming, managing and caring for children with autism.
The innovative solution aims at targeting directly (participating in the creation of tools, webinars, events) in the next year phase :
15 000 healthcare providers
600 children with autism and their families
210 educative staff, specialized classes, in 3 regions
Indirectly through the diffusion of the app and the professional networks:
20 000 children with autism and their families
350 000 children with communicating disabilities
62 000 healthcare providers
1050 educative staff, specialized classes
30 300 non-french speaking schooled children
The validated relevance of Ben le Koala lies in universal design, it has already impacted ten of thousands of families through its capacity to promote the inclusive approach. It addresses the needs of all targeted groups as it improves their participation and the quality of care for vulnerable group
Our will to develop Ben ; to keep on designing and delivering this solution, comes from the request of families and professionals for more content (videos and non-digital tools) addressing the health issues described above and the construction of clearer usage paths for Ben in the field
Our solution has proven its relevance to families and professionals. It was evaluated on more than 150 children in testing phases and two studies are ongoing until this summer tackling development of parental skills
We have 27,000 active users of the applications per month.
We have also more than 300,000 downloads of the application and more than 3,3 millions views on Youtube.
We have developed a Ben le koala community, parents, children and professionals share experience and practices during events and webinars (last one online in March 2023)
Our organization has received many national and international prices. Since 2003, Signes de sens has made information and culture accessible to people with sensory, cognitive, mental or psychological disabilities. We have also been part of the International Visitor Leadership Program from the US Departement State to explore the US model about disability.
We provide concrete solutions to the problems encountered by the most vulnerable public and thus improve the experience of all, in a logic of universal design.
On a daily basis, we act for a more inclusive society that gives everyone a place. Our impact:
About 200,000 people reached directly each year
More than 50 accessible solutions published (educational kits, books for children, museum visits, mobile applications, etc.)
Also, it is crucial to note that we are working currently with international partners to develop international projects. The majority of autistic individuals in lower resource countries (LRCs) do not have access to the healthcare necessary to support their medical needs, and experience many of the barriers described above, especially lack of services, high costs, shortage of physician knowledge, and stigma. Yet, most of the studies on barriers to healthcare faced by individuals with ASD have been conducted in HRCs. Effective community-delivered programs have been implemented in many LRCs to increase access to care. These include the WHO-led CST programs (described above), which are active in several LRCs, including the Philippines, Ethiopia, and China,34,35,98 and PASS Plus, a program delivered in rural India, which integrates support for autism comorbidities.99
These initiatives could really benefit from our innovative solution that can be easily adapted, as the process is by imitation: accepted by specific profiles (e.g. autism) but used by all children (universal design).
Ben simply supports children, families and professionals to act as early as possible and to avoid a situation to deteriorate from difficult to dangerous.
Our solution is being developed with people, for people and builds a better system that responds to the needs of children with autism while reaffirming their active role. We have experts from the community as part of a scientific board that meets regularly and direct the development of the solution.
- Increase local capacity and resilience in health systems, including the health workforce, supply chains, and primary care services
- France
- Growth: An organization with an established product, service, or business model that is rolled out in one or more communities
27 000 active users of the app and 300,000 downloads of the app
3,3 million views on Youtube
We can assess 3 of our ambitions that shall require support:
to propose our solution abroad
Ben le koala has managed to support many families but we are well aware of the challenges not only in France but also in Europe and around the globe for people with disability and specifically children with Autism Spectrum Disorder.
We need support to reach out to the USA and to some countries in Africa,Asia and South America. We need advices and scientific data to better adapt to local health and educational systems, deal with local cultural specificities to adjust the solution
We are interested in working with researchers and monitoring and evaluation experts, not only for the solution in France as it grows but also to test in different settings and how quick it impacts the lives of people.
build strong partnerships
In the same line as above, we have heard about MIT Solve and read reports so we can assess the richness of the partnerships to be developed. To be accurate abroad we will need the right partnerships with the local actors in the field of autism. Technical support is also key to our development, especially when it comes to be able to propose latest technological advancements
to find our business and legal model
It is vital to build the resilience of our systems and for Ben to find its business model.We have set a target to at least double the number of people reached every year in France and shall assess targets for new countries. We could always benefit from follow-on funding throughout the years and in-kind support. We have developed some products with private companies but are keen on receiving advices to fix the terms and strategic commercial plan. As well, it is necessary for us to get legal support to better comprehend and deal with property rights and other issues.
Ben has started to be well known with the video on how to brush your teeth. We have been developing on prevention more recently and as we said we are doing so as parents and professionals are asking us to help them not only with tools but also in terms of coordination. It is a real challenge to ensure continuity of care between schools (where we can find medical staff), specialized childhood care professionals, healthcare providers in hospitals and other settings and families. We have experts from all areas to guide us and participate but we definitely are engaging in a new scale and would need support from MIT SOLVE
- Business Model (e.g. product-market fit, strategy & development)
- Legal or Regulatory Matters
- Monitoring & Evaluation (e.g. collecting/using data, measuring impact)
- Product / Service Distribution (e.g. delivery, logistics, expanding client base)
- Technology (e.g. software or hardware, web development/design)
First of all, as written above, in France, access to care for people with autism is complex and linked to their communication difficulties. It is also assessed that lack of training and awareness of health professionals about autism contributes to the problem.
People with autism may face difficulties communicating and understanding the professionals' instructions. Healthcare is thus not only very stressful and source of anxiety for the child but
their behaviors can disrupt and disturb professionals. All families, children, and professionals lack tools.
Our solution has proven successful. It is free of charge. Now it should be developed to include substantial materials for oral care and other topics.
Our solution introduces mental flexibility to the child and impacts perseveration and cognitive flexibility. We need to develop new materials where the child will start getting used to changes. For example, Ben has a green toothbrush but also will use a yellow one. The child will notice the difference. As our scientific and pair expert has expressed, the child manages to learn one specific skill with one material, and Ben proposes as well to work on that same skill but with another material. It helps introducing variations and flexibility.
Ben is innovating and different because it constantly evolves with requests from parents and professionals. They have asked to introduce reminders, weekly tasks planning, Ben shall answer these needs. Ben proposes chaining, a behavioral strategy used to teach students with autism complex behaviors by breaking them down into smaller sequential steps. It develops chaining based on task analysis. Individual steps are recognized as requirements for task mastery. So parents and professionals are well guided and secured in their planning
The application innovates as well by proposing physical materials that can be printed out from the app. The child is also an actor as he./she chooses those materials.
As explained, the application is an “all in one service” to support the development of children. It gives advices, proposes tools but above all helps each parent to gain time and reduce cognitive load
What families and professionals request is not only tools but better coordination. That is where the Ben methodology is very innovative as it gathers different actors to create the tools together. They start discussing, they develop connections, and they stay connected within Ben community . We propose webinars, events, where they can share their experiences and feedback, give advice to each other on the use of the app and in general on the child development. The whole process is backed by our scientific board with renown experts and people from the community. And again thanks to the universal conception it works for every child.
We see how to develop our solution as Government agencies are starting to work transversally and discussing how to use Ben for new publics. As we have targeted for the diffusion phase, the broader impact will be for all children with disability , but also children under legal protection measure, social services, as well as non-French speakers, refugees.
Within 5 years Ben's work will avoid saturating health centres and hospitals in France and in at least 2 other countries due to 3 keys achievements :
-Better adapted prevention for people with disability, therefore reducing their health problems and their impact on the health system including costs
-Better access to care and therefore early management of health problems to avoid critical situations and the development of chronic diseases and other serious health problems. The risks of resorting to emergency care and creating additional stress at the level of health professionals are minimized
-Territorial and financial equity because Ben is digital and free.
As soon as year 1, in France, coordination of care is promoted, collaboration between all actors (school, parents, health professionals) is improved. Our team develops an efficient and mobilizing governance. The new tools are adapted and allow children to imitate and acquire new skills . Ben unifies practices, secures children and facilitates their acceptance of care.
Over the next 5 years, important research will be undertaken and shall show:
- developped efficient and innovative health literacy tools for individuals and professionals are broadly used in France and in 2 other countries at least
- identified innovative practices, approaches, tools for user participation and coordination of care are adopted in various setting and across government agencies in France and 2 other countries at least
The impact goals are achieved through a range of actions organized in 4 main phases
1> comparative analysis of systems with an identification of the levers to be activated in each country to improve practices and welcoming of children with ASD in health facilities. We will rely on our design methodology to conduct the work and see how Ben can be a lever and adapt to specificities
Timeline :
Year 1 and 2
2> development of contents, app development, testing in the various fields. We produce tools that seem relevant by mobilizing all the actors and in a logic of inclusive service design. We include the adaptation of interfaces in different languages and possibly some cultural specificities (Development of the app with the free support of Cap Gemini in under discussion)
Timeline :
Year 1 and 2 in France. From year 3 to 4 in at least 2 other countries
3> Communicating and sharing tools in different countries for testing and impact evaluation at 4 levels: on the child, on the family, on the professionals , on the system
Timeline :
Year 3 in France
Year 4 and 5 in at least 2 other countries
4- Final report and project closure events
Timeline :
Year 3 in France and 5 in at least 2 other countries
- 3. Good Health and Well-being
- 4. Quality Education
- 10. Reduced Inequalities
As written above we will conduct research and evaluation throughout the project. As soon as year 1, the field impact of the project is shared in semi annually quantitative and qualitative reports.
We use different analytics coming from :
● Google analytics (numbers of users)
● App Store & Android Analytics
Browsers Analytics
Exemples of indicators :
100% of the tools are tested with children (30 children face-to-face and 50 children remotely) and validated
###i#< of Increased parental satisfaction with tools
###i#< increased satisfaction rate of professionals with tools
###i#< of professionals feeling more equipped to welcome children with ASD
Cost efficiency of prevention through Ben: % of children accessing oral care prevention compared to previous situation. For example, if we see that 60% of children who did not access oral health prevention prior to the project access it thanks to Ben, and that non-oral hygiene usually multiplies the costs of care by 8, we can evaluate the gain allowed thanks to Ben. This will be developed with researchers.
Frequency of RS posts and likes
Number of new RS Followers
Target:
Double the number of users every 2 years
300 people (health professionals and families) participating in design workshops
Our solution is adapted to the current context (problems and opportunities, especially technical opportunities).
We target first children with autism , their families and professionals, we extend their skills and help them be more autonomous considering their present condition.
But Ben allows anyone to get free access to the app so it helps parents, teachers in classes, all professionals, who work to support children development.
Ben proposes its universal conception, so parents and professionals can use the same tool for the whole family and class, notwithstanding the differences between children
Ben is a system change project : creating a range of tools to help every family live a better life with less cognitive load !
So far professionals (not only health professionals but this is true as well for school professionals) tend not to analyze the different contexts in which the families live. They take parents as one category of actors, give them one “parenting” role. Ben allows to change the way people cooperate, it gives each one a complementary role to play (and not a contradictory one). Professionals are not used to cooperation, they often understand and use collaboration rather than cooperation. here we say: really work together, share a common goal for the child development and health.
Research that will be conducted will also focus on this convergence zone that the methodology and app develops. Ben build the field cooperation, it builds on the needs and questions of all actors and transforms the group (those taking part in the design workshops , webinars, events..) into a powerful multi actors collective.
The app is developed in Flutter and available on iOS and Android.
The videos are hosted on a private web server and the other resources (e.g. pdf) are on Firebase.
Moreover, the back office of the application is also managed from Firebase.
We own the source code and it is accessible on a GitHub.
Ben le koala program uses an application to gather all the different tools created with and for children with autism: videos, printables..
The application is used by the parents/professionals, the child does not interact with the application, he/she only watches the videos and can chose the physical tools (printable).
The application can be used in groups (for example, to watch videos in class)
- A new application of an existing technology
- Software and Mobile Applications
- France
- France
- Hybrid of for-profit and nonprofit
At Signes de sens our vision is guided by each of our actions. Disability is part of diversity and we show, through our projects, that it is a key point for creativity and innovation. It can generate value for the whole of society in a logic of universal design.
Accessibility becomes a process of progress and disability a lever for innovation! We have been convinced of this for a long time now, and we will tell it, share it, bring it to life further and further afield.
"Each of our projects reinforces our conviction that, through accessibility considerations and problem solving, we ultimately improve everyone's comfort. In this way, all of society benefits and improves its lot: this is the magic of universal design ", Simon Houriez, Founder of Signes de sens.
we share the values of MIT SOLVE and work on the same areas in terms of
-Internal efforts : we hire people based on their skills, motivation and experiences. Our practices ensure that people of all backgrounds can enjoy working at Signes de sens. We are committed to providing an environment that is accessible to individuals with disabilities. Some of us are deaf, some of our scientific committee members are diagnosed with ASD (aspergers’ syndrome).Women represent the majority of salaried staffhttps://www.signesdesens.org/n...
-Communications : we train our staff and even propose training to other organizations on what is known as “clear communication”. We also train staff and other organizations on sign language.
Program: all our design workshops take into considerations the disability of participants. we are used to chose activities in regards to the handicap in the group. All documents are drafted to be accessible, we use sign language translator, etc.We apply the same in our organization, for exemple before a team meeting, we send all the ppt documents to our sign language translators so that they are ready the D Day to translate for colleagues. We follow the law as under French law, any employer, whether governed by public or private law, employing at least 20 employees is required to employ, on a full-time or part-time basis, disabled workers in a proportion of 6% of the company's total workforce.
Today, Ben le koala exists thanks to a mixed financing method combining:
● Public funding: Ministry of education, Regional health agencies
● Private funds, financial sponsorship and skills sponsorship: Foundations (Crédit agricole, Orange, Fondation de France..), Stepwise, Cap Gemini
● Own resources: Signes de sens has developed different service offers in training and in inclusive design. It also has an online store selling various products. The funds raised from these services also fund the program developing free of charge solutions like Ben le koala but also Elix dictionary, their maintenance as well as their restructuring to prepare for the future in terms of massification and internationalization
- Individual consumers or stakeholders (B2C)
It is important to look for and diversify funding in France and abroad to further our work. As discussed with various government agencies, it is crucial to propose co-funding and to answer calls for proposals in innovative research.
We will also develop our own resources to keep the basic service free of charge (common good) and continue to improve it, but also to optimize our integration and content management processes.
We wish to explore the economic model of Ben for the next 2 years:
● innovation funding (tax credit, BPI, etc.)
● integration of advertising
● sale of secondary items (books, Ben musical box, Ben dentist toy suit and box, Ben doctor toy suit and box .. with companies like Cultura and other promotional items, etc.
● introducing a training on the Ben technology and methodology for professionals (based on the model of PECS)
These income must cover:
● the functioning (workshops, hosting, maintenance, communication, community animation, etc.)
● the development of app and new functionalities
Ultimately, by covering this operating cost with the revenue generated, we will be able to create new tools as per the request of families and professionals
We are looking for partners to help us scale up and at the same time developing a business model
Ben le koala has received the support of many partners, for its funding and technical development:
● Changer par le don (similar to the “giving pledge” in USA): 60 000 euros (2023)
“La France s’engage” Foundation, led by former President François Hollande
● Ashoka: support since the election in 2009 of the director of Signs of Sense as Ashoka Fellow for Elix
● Institutional partners to legitimize the project:
the Ministry of Education and Edu’UP: 50 000 euros (2022-2023)
Regional Health Agency of Hauts de France: 15 000 euros (2022)
Foundations:
Orange: 15 000 euros (2023)
In terms of National and international prizes:
●2014: "Trophy for the best mobile health application for the general public", in the "oral
health" category of the Mobile Health Awards organized by DMD Santé .
●2016: Medappcare labeling.
●2016: mHealth Quality
●2017: International Design for All Foundation Awards.
●2017: "Internet users'favourite " of the Mobile Health Awards organized by the DMD
Santé .
●2018: CCAH Award in the Changing Lives
●2019: "Coup de coeur " of the Caisse d'Épargne Hauts de France Foundation.
●2022 : «Zéro Project Award » (UNESCO)