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Improving independent living and inclusion of Children with Cerebral palsy in Bugesera, Rwanda through an Appropriate Paper Based Technology

CECHE Foundation aims to make special assistive devices using cardboards to promote the inclusion of children with cerebral palsy in Rwanda

Photo of Joseph MUNYANDAMUTSA

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What problem does your idea solve?

Access to assistive devices is a global problem for disability inclusion in ordinary living. In Bugesera district of Rwanda, children with cerebral palsy are facing complications due to inappropriate early intervention. Many of them are left stigmatized in their homes because they can’t move, communicate or interact independently. This results in lack of access to basic services in education, health and social. This situation overload caregivers making their economy situation deteriorating

Explain your idea

The Appropriate Paper based Technology is intended to be implemented for young children with cerebral palsy who don’t move from their homes due to postural weakness. Those children will first be identified by community Inclusive development workers, and their needs will be assessed with support from a professional. Family members will be included in designing and making the special assistive device which responds to the assessed need. Card boards and other waste papers will be used to make the therapeutic furniture produced locally by trained community resource persons This locally made assistive device will be taken home by a trained family member to be used for the inclusion in the family and the community in general. Regular follow up will be organized through a home visits program by Community Inclusive Development Workers under supervision of a professional. This will certainly change family and community attitude towards abilities and potentials of children with cerebral palsy, enabling and facilitating them to achieve their full potentials The final goal of the APT is to achieve independent living and inclusion of children with disability in family and community life; enabling access to education, healthcare and social community services. Those beneficiaries who were staying at home will be able to go to schools while their parents will be mobilized for mutual support through self-help groups. Community participation in the implementation of the APT is vital

Who benefits?

Children with cerebral palsy manifesting physical disabilities and postural problems with their families will benefit from the APT. It will be produced locally using available community resources in Bugesera district, Rwanda. Those children range from 8 months old to 6 years old both boys and girls, whom data are not known. This idea is targeting at least 10 children and their 10 caregivers per administrative sector, making a total of 150 children and 150 caregivers in the whole district

How is your idea unique?

This idea of APT is very unique: users participate in designing, using waste products in making useful life changing devices is an unknown experience to many people. It is only in few countries and in Rwanda it is not well known technology. The final product is meeting local context, is affordable, adaptable, and lasting. These elements make the user to feel comfortable and they don’t cause any harm. The advantage in this idea is that it will add a contribution to the sustainability of the organization, making a little income. Other few organization in Rwanda who are trying to make APT do not focus on quality standards of assistive devices. I strongly believe that my idea will be more successful because it will be extended in a social business model, ensuring quality standards from the making to distribution. To be able to make that, a close collaboration with advanced APT promoters who are more skilled across the developed countries will be established to allow technical exchanges.

Tell us more about you

CECHE Foundation is an acronym for Children in Educational, Culture and Healthy Environment. It is a legal national NGO founded in 2013 operating in Ntarama, Bugesera district in Rwanda. It is a community centered organization with minimum external support; working with Community workers who are trained on disability and inclusion backed by its staff. This team is devoted to make this idea a reality. A support from Cerebral Palsy Africa might be solicited for short course training in APT

What are some of your unanswered questions about the idea?

The APT is a new concept in Rwanda. CECHE Foundation is the only organization in Rwanda whose staff have basic skills in APT and is really persuaded to moving from a community support service delivery to a wider money making socio-economic enterprise where PWDs will get employed. I am still working out on how CECHE Foundation can own a permanent residence within the community in order to move from a renting organization to a next level on which CECHE Foundation is strong, sustainable organization reputable in the country and across borders. This can be achieved in partnership with other organization who are eager to support both technically and financially because the organization is still fragile in terms of trained human resources.

Where will your idea be implemented?

  • Rwanda

Experience in Implementation Country(ies)

  • Yes, for more than one year.

Expertise in Sector

  • I've worked in a sector related to my idea for more than a year.

Organizational Status

  • We are a registered non-profit, charity, NGO, or community-based organization.

Idea Maturity

  • Early Growth/Roll-out/Scaling: I have completed a pilot and am ready or in the process of expanding.

How has your idea changed based on feedback?

the idea has not really changed. however, it was strengthened to include feedback from both CECHE Foundation and OpenIDEO communities. For example Including that the devices produced by this idea will be produced in consultation of both parent and user. Even if users are children, they will be consulted to participate in the designing phase of the assistive device and consider their choice. This is some thing that we did not think about deeply before the feedback. The other thing that we improved from the feedback is the standardization of the devices, matching the local production with the standards required.

Who will implement this idea?

This idea will be implemented in the full participation of the community. Five full time staff located at our Community Daycare Rehabilitation Center will be implementing this idea. the center is located within the same operation geographic area. The five staff will be working with Community Inclusive Development Workers based in the villages to promote the access to healthcare services. This idea will also collaborate with the Cerebral Palsy Africa to provide quality standards devices.

Using a human-centered design approach, you may uncover insights that lead to small or foundational changes to your organization’s existing strategy or processes in order to unlock the potential of your idea. How would your organization go about making such changes?

CECHE Foundation is a small organization of a strong team of young innovative leaders. in case there is an insight that lead to the changing of our strategy/philosophy, it will require the board to meet and decide. As a growing organization, it will welcome the new ingredients regarding to that change. once the board approves the changes they should apply . Such approval will be acceptable if the intended changes to amend do not deviate the mission of the CECHE Foundation which is to build a brighter future based on education, Cultural and health background among all children.

What is it that most attracted you to Amplify instead of a more traditional funding model?

The most attractive thing about the Amplify that I noticed is the mutual exchanges among professionals from different background to inspire each other. this help designers to orient their work in a human-centered mindset. The process of the challenge have a learning aspect through the comment section, e mails exchanges,.... this is really a participatory funding model which gives the time to the people in the competition, to reflect on their idea.

What challenges do your end-users face? (1) What is the biggest challenge that your end-users face on a day-to-day, individual level? (2) What is the biggest systems-level challenge that affects your end-users?

children with Cerebral palsy face many problems associated to either their impairment or to the environmental barriers, or a combination of both. Children with cerebral palsy have difficulties in positioning and mobility. if they are not cared in consideration of their disability during the early childhood, their body become nonfunctional, leading to severe disabling complications. in this situation, some parents in our community still have to leave their children locked inside the house and go for daily living work. nationally and globally, the assistive devices are still a dilemma for person with disability in need. due to high cost of assistive devices, children with cerebral palsy (their families) have problem in affording them because they are not eligible for health insurance.

Tell us about your vision for this project: (1) share one sentence about the impact you would like to see from this project in five years and (2) what is the biggest question you need to answer to get there?

IMPACT: By 2022, at least 150 children with cerebral palsy across Bugesera district are included and participate in their family and community lives by aid of the making of appropriate assistive devices which respond to their needs. QUESTION: How can we improve the functional independence of children with cerebral palsy to allow their participation and inclusion in family and community life? How could the parents be actively involved? How can we produce low cost local devices?

How long have you and your colleagues been working on this idea together?

  • Between 6 months and 1 year

How many of your team’s paid, full-time staff are currently based in the location where the beneficiaries of your proposed idea live?

  • Under 5 paid, full-time staff

Is your organization registered in the country you intend to implement your idea in?

  • We are registered in all countries where we plan to implement.

My organization's operational budget for 2016 was:

  • Under $50,000 USD

If your team/idea/organization has a website, please share the URL below.

https://web.facebook.com/CECHE-Foundation-169026229960023/?ref=aymt_homepage_panel https://www.youtube.com/watch?v=8BRq6BgV0ZE

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20 comments

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Spam
Photo of Christie Taylor
Team

This idea is wonderful, replicable and inspiring! Good luck in your endeavors. I like that your concept is from a renewable resource. Thanks for sharing your concept.

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Hello Christie! i really appreciate your encouragement. Thank you very much!
much appreciated.
Joseph

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Hello!
I would love to take this time to thank the amplify team and external experts for your constructive comments and questions. I wish to respond to some of the asked questions that we could not include in the idea because of space limitation.
. The cardboard technology alone is not the only best option as a material for a chair that needs to be adjusted and provide support. for example wooden chairs are another option but this idea will focus on cardboard technology because it is easily accessible and cheaper than wooden technology and is environment friendly compared to other options. the cardboard is not used alone: some other local materials such as news papers, cassava flours, brown papers, ....The challenge with collection waste papers and materials is that some materials collected by our network are not of a required quality and the logistics to collect them is a problem. Yes we are having competent physiotherapists who received an informal training on paper technology who inform in the designing of the devices. straps may be used but not always depending on the assessed abilities and needs. cushions are not necessary because the devices are harmless to users. the model will be sustainable in a way that they will generate income and create a social community enterprise. the device produced are varnished which make them strong and waterproof which explain their durability.
. This idea put the users at the central of every production process (where applicable). children will be consulted either verbally or non verbally to know what they think about the device. in case the child's communication abilities are affected, the caregiver will be at the heart of the designing process.
. The safety of the devices will be ensured by providing a guide manual (catalog) to explain the usage of the device. The overlaying different cardboard layers and varnishing the finished devices are a key asset to their durability and management. their repair will be provided at the community level by the trained community personnel who even participate in the designing the devices.
. cardboard, cassava flour, news papers and brown papers can easily be found in the context of this idea. the clinical needs of the children are first evaluated by a physiotherapist to ensure that the device does not deteriorate the child condition. the Community Inclusive development Workers are trained in the community to eliminate environmental barriers

Thank you very much once again.
Joseph

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Hello!
Thank you very much for the constructive comments. I will share more insights of my idea very soon.
Regards
Joseph

Spam
Photo of OpenIDEO
Team

Hi Joseph and Team! We’re excited to share with you feedback and questions from the Amplify team and an external set of experts. We encourage you to think about this feedback as you continue to improve and refine your idea. You are welcome to respond in the comments section and/or to incorporate feedback into the text of your idea. Your idea and all associated comments will all be reviewed during the final review process.

General feedback from experts:
• One expert shared, “This new idea is very exciting from a number of angles: it uses low-cost, appropriate technology adapted to individual needs; it will benefit children who are otherwise unable to participate in normal life and are left at home, immobile; it has the potential to grow into a social enterprise that could serve the whole country and beyond.”
• “Excellent idea mainly because involves family members, an approach that I have never seen and will help with improvements and maintenance of the devices.”

What experts shared for is this idea desirable, feasible and viable?
• Experts saw this idea as potentially desirable, feasible and viable, some questions: Is cardboard technology alone the best option as a material for a chair that needs to be adjusted and provide support? What are challenges around collecting waste materials and production? Do you have someone on your team with clinical knowledge to inform design? Is there a need for extra support to be considered such as straps and cushions? How will your model be sustainable?

How does this idea consider user needs?
• “This idea builds in a consideration of users' needs in making the assistive furniture in collaboration with each family and user. It is in the early stages of testing but has demonstrated an awareness of what has failed previously”
• Experts would love to better understand how you considered/plan to consider users needs throughout the design process.

Some questions to think about:
• How will safety (standards) be assured? i.e. strength of the finished product, durability, risk management, wear and tear, maintenance / care requirements.
• What kind of waste material can easily be found in the context of this idea?
• “Using recycled materials is a noble concept if appropriate and necessary however using these materials should not outweigh or impact on the clinical needs of the kids and their independence. I think this has great potential, but needs a lot of work to provide an appropriate solution for the community. How do you propose to fully understand and consider the needs of the user and their environment?”

Thank you for sharing the amazing work you are doing!

In case you missed it, check out this Storytelling Toolkit for inspiration for crafting strong and compelling stories: http://ideo.to/DXld5g Storytelling is an incredibly useful tool to articulate an idea and make it come to life for those reading it. Don’t forget - June 4 at 11:59PM PST is your last day to make changes to your idea on the OpenIDEO platform.

Have questions? Email us at amplify@ideo.org

Looking forward to reading more!

Spam
Photo of Fiona
Team

Hi Joseph, well done on your idea and recognising the importance of positioning postural support for children with cerebral palsy, we have also looked into the idea of APT here in Uganda, but as yet have not received any training. Have you made prototypes of these already? How long to they generally last for? Are you charging the families to purchase them or do you give them away? How do you plan to make this a sustainable project.
Also do you have any physio or occupational therapy support for your children and to advise on the best positions for each child?
Best wishes with your project

Fiona

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Thanks Fiona. yes w have started the APT in our community. the devices we produce are strong and can last for about 4 years depending on how the user is taking care of it. we have Physiotherapists who support regularly in that. yes we charge them at a lower cost to encourage their participation. if the family can't afford, we include the family member in making the device for their child at no cost.

Spam
Photo of Alexandra Berrio
Team

Is this related to the Adaptive Design Association?

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Dear Alexandra, I don't get you well by Adaptive Design Association?? Can you explain ?

Spam
Photo of Alexandra Berrio
Team

ADA is a nonprofit based out of NYC. They've been building assistive technology from cardboard since 2001. They travel to organizations and train social workers and the community on how to use and build local resources. I thought perhaps you were one of those organizations. If not, I HIGHLY suggest reaching out to them. Their Founder, Alex, has won many awards for her work in this field and they are highly experienced in the approach and methodology you are taking.

Aside from this, I'm traveling to Kigali next month to test the basic prototype my team and I are building for children living with communication disabilities. We are targeting cognitive and communication in inclusive schools. It'd be great to meet you and your team! We'll be in town from June 6-18. Please email me if you're interested- alex@assistivelabs.com

Spam
Photo of Joseph MUNYANDAMUTSA
Team

This is really helpful Alexandra but I can't know exactly if APT and ADA are the same technologies, even they use both cardboard. Yes, sure. I will reach you through the email. Regards

Spam
Photo of Clarice Torrey
Team

What type of professional is training the CIDWs? Are they being trained on CP or just how to make the assistive device?

Spam
Photo of Joseph MUNYANDAMUTSA
Team

thank you very much clarice. The CIDWs are trained by Physiotherapists who hold also the skills in the Appropriate Paper based Technology.

Spam
Photo of jennifer compau
Team

Wonderful innovative solutions. I am very interested in your ideas.
Will you design custom special assistive devices for each child?
Would they include both standing and seated positions?
How do the community Inclusive development workers connect with the families of children with Cerebral Palsy? Once they are connected is there a period of time that they follow and support the child and their families?
Namaste, Jennifer

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Thank you very much Jennifer for your interest in this idea.
yes, every child's needs will have to be assessed in order to make an "appropriate" device that meet his/her needs. this means that a device can be either to support his seating or his standing positions. The CIDWs are members of village selected by the community. they conduct home visits advising the families of children with Cerebral Palsy. Such visits are regularly organised and reported to program coordination office at our community center. thanks for your questions Jennifer!

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Thank you very much Jennifer for your interest in this idea.
yes, every child's needs will have to be assessed in order to make an "appropriate" device that meet his/her needs. this means that a device can be either to support his seating or his standing positions. The CIDWs are members of village selected by the community. they conduct home visits advising the families of children with CP. Such visits are regularly organised and reported to program the coordination office at our community center. thanks for your questions Jennifer!

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Thank you Ashley!
The initial pilot has been conducted where Community Inclusive Development Workers (CIDWs) are trained in home based care for cerebral palsy. one of them is trained to produce assistive devices using card boards and other waste papers. the CIDWs identify children in need of a device, and refer the child to center for supporting (through engaging) the family by provision of a device. there is an emerging APT workshop now at the community center. I learned that every community has potential resources for community based inclusive development. (both human and materials)

Spam
Photo of Ashley Tillman
Team

Thank you Joseph for contributing to the Challenge! Can you share a few details about your initial pilot and what you learned?

Spam
Photo of Friends of Mmofra
Team

We saw some examples of cardboard-based structures when we paid a therapy visit to a CP support group in Accra Ghana last year. How long would say the chair in your image last, and how resistant is it to water? Thank you and keep up the good work!

Spam
Photo of Joseph MUNYANDAMUTSA
Team

Thank you for your comment. The chair could last for about 4 years and more depending on how the user is taking care of it. It is really strong; varnished and is impermeable!