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"Help, I've fallen and I can't get up" - Community-based response networks to ensure inclusive access to disability services

The right help at the right time for the right individual - available on any phone.

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What problem does your idea solve?

Persons with disabilities (PWDs) face daily threats to their quality of living and health, often being excluded from access to basic social services due to the specialized resources and assistance required to meet their needs. In wealthy countries PWDs can request assistance through a range of public service access points. Our solution allows resource-limited communities to build scalable response networks so PWDs can quickly and reliably request and access the specialized services they require.

Explain your idea

We developed Beacon, a text-message based dispatching platform that allows local communities to crowdsource assistance from the nearest and most appropriate service providers. Created originally for prehospital emergencies, we regularly see Beacon being used by PWDs to access basic services from local volunteers, similar to a digital upgrade of the classic "Help, I've fallen and I can't get up" alerting system. The potential application to the larger disability to create inclusive resource networks appear limitless: A recent amputee is unable to reliably access appropriate transport to get to physical rehab appointments; a wheelchair-bound person living alone falls from their chair and needs help get back into it; a blind person needs help going to the market. In each case, Beacon can ensure that appropriate, specialized help is always accessible. By relaying requests for assistance from a PWD to appropriately-trained and equipped providers throughout the community, Beacon allows the nearest available resources to be quickly located and dispatched and remedy whatever challenge the individual is facing. Beacon's lowest-common-denominator design and easy-to-understand interface ensures that a wide range of local resources can be leveraged to strengthen and scale the formal and informal systems that are best positioned to attend to the unique needs of PWDs. Whether home health aides, specialized vehicles, or medications and supplies delivery, Beacon coordinates local resources.

Who benefits?

Beacon benefits all individuals and organizations caring for PWDs by streamlining and then automating the end-to-end coordination of resources, from dispatch to delivery. Specifically: 1. PWDs who face significant obstacles in accessing specialized resources and assistance 2. Providers who lack adequate alerting and communications tools to efficiently coordinate response and delivery 3. Family members and advocates who are left to provide care and monitoring with minimal outside assistance

How is your idea unique?

Our approach is unique because it empowers local communities, essentially inverting the centralized call-center approach to create local networks where access to care and services is crowdsourced from community members and organizations. Designed to gain buy-in from the outset, our approach ensures that a range of organizations can be engaged as equal stakeholders in the system, while we offer the the tools and training needed to design, implement, manage, monitor and sustain their own community-based response systems. Our software is unique because it eliminates the need for the expensive and inappropriate dispatching technologies that were originally developed for the public infrastructure of Western nations. Instead, Beacon leverages the people and resources that are already being used to provide care and services, and coordinates them on a platform that's universally-accessible on any type of mobile phone, with or without internet.

Tell us more about you

Tanzania Rural Health Movement (Mwanza) - Community health organization providing health care services, education and training to local residents. Lead implementing partner, oversees training, on-boarding and coordination of local response partners. Trek Medics International (NYC) - Improves access to prehospital emergency care and transport in resource-limited settings through mobile phone technologies. Lead technology partner and technical advisors for system planning and development.

What are some of your unanswered questions about the idea?

There are three principal questions we have regarding the future path of Beacon: 1. When does it become necessary to have a mobile app version for caretakers/responders? (MMS/push notifications vs. SMS-only) 2. When does it become necessary to have a mobile app version for the public to report incidents? 3. What's the best way to design a smartphone version of the app so that it's accessible to the greatest range of disabilities? So far: 1. A mobile app for caretakers/responders would improve experience, but not necessarily accessibility 2. If it were conventional 9-1-1 emergency response, we're very against this. But for non-critical response networks, it's much more feasible 3. Physical vs mental vs cognitive vs mobility vs ...

Where will your idea be implemented?

  • Tanzania

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

  • Mature Growth/Currently Operating: I am currently implementing this idea but may still be iterating.

How has your idea changed based on feedback?

Feedback has helped us identify two questions to use to best determine when and how our platform can be adapted to meet the specific needs from among all disability types: 1) Who will be calling for help? If it’s caretakers requesting assistance, then Beacon can function effectively in its current state to coordinate community-based response networks and provide inclusive services. If PWDs will be requesting assistance directly through Beacon, we have a second question: 2) How accessible is the current platform to specific disabilities, and what modifications are needed to make it truly accessible to each disability? At present, Beacon would be most accessible to paraplegics and persons with auditory and verbal disabilities. Persons with visual and moderate cognitive disabilities and quadriplegics would require minor modifications to ensure accessibility. For severe cognitive disabilities and multiple sensory impairments, major modifications would be required.

Who will implement this idea?

The idea would be implemented through partnerships with community-based organizations already providing support services to PWDs. Partners could be a school, a physical rehabilitation center, an NGO, or small network of family members and other caretakers among others. In each case we would provide training and technical direction during implementation, and then offer on-going technical support and assistance with monitoring and evaluation and quality improvement efforts as needed.

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?

At the beginning of any project, whether for software development or a new program, we work through a process that outlines the project’s purpose, the desired objective, the strategic goals and the values we want to adhere to. Using these parameters, day-to-day decisions are made according to open dialogue with our partners, staff and volunteers. Larger decisions are made with input from the board of directors and technical advisory board. Regarding the platform, final say used to come from senior management. However, now that Beacon’s core functionality and underlying architecture are where we want them, our development priorities have changed to adding new features which we solicit from our partners in the field who see the impact of future development most clearly.

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

What attracts us most about Amplify is its focus on strengthening early-stage solutions that fall outside the traditional development mold. As a non-profit tech startup building software solutions for community-level response systems, we've found it difficult to find our "niche" for support. Amplify is consistently getting behind partnership opportunities that cater well to out-of-the-box solutions like our own, and seem to be willing to take bigger chances than traditional aid partnerships.

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?

For both PWDs and caretakers, a major challenge is being able to alert and access the right kind of help when and where it’s needed. Someone has a physical rehab appointment but can’t find a ride; someone fell out of their wheelchair and can’t find anyone to help them back in; someone has had a seizure and doesn’t know what’s going on. Each instance, and many others, require specialized and appropriate response services. To provide services, however, a second, systems-level challenge exists: Without a reliable way for available resources to be dispatched and coordinated, their services become under- or ill-utilized, resulting in a supply-demand mismatch that negatively impacts the formalization of reliable response networks.

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?

1) By 2022, 1 billion people will have 24-7 access to on-demand emergency care and transport services such that 90% of persons requesting assistance in communities using Beacon will be attended to by trained responders within 10 minutes in population centers and within 30 minutes in peripheral communities 2) What is the proof point needed for governments to fund system scaling?

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

  • More than 2 years

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 seeking registration in order to implement in additional countries.

My organization's operational budget for 2016 was:

  • Between $100,000 and $500,000 USD

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

trekmedics.org/beacon/disability/

5 comments

Join the conversation:

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Team

Hi Jason 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, “The idea brought a great solution for the PWD access to professional assistance and adequate assistive technologies resources.”

What experts shared for is this idea desirable, feasible and viable?
• One expert shared, “Desirability: Yes! Feasibility: Yes! The implementation is explained well and uses the local resources available. Viability: Yes! But would love to better understand the specifics on different contexts of use."
• “No doubt it is valuable, feasible and viable. I would love to understand your thoughts on this question the other way round: Why is has this not already occurred? What are the obstacles in existing services or networks of services hindering this?”

How does this idea consider user needs?
• “I think the idea meets a real demand and its are associated to the real knowledge about the PWD daily needs. Nevertheless, I think would be interested to know the condition that the families of the PWD are living? Who are taking care of this PWDs? Are they, in most cases, professionals or members of the family? Do the people who are around the PWD have the abilities needed to easily interact with this service? I think that this immersion in the context of the PWD families could be a fantastic opportunity to implement the idea and find other ways to make the service work better thinking in terms of universal inclusivity of the idea will also be key to success.”
• “It’s clear that this has been designed with PWD in mind, but there’s limited information in the post of user involvement and user centered design that has been done, would love to hear details about how this was done or how you plan to do this moving forward.”

Some questions to think about:
• Considering your model, how and what makes people join and contribute and what’s your strategy?
• Is the system accessible (WCAG2.0?)?
• How is your product accessible to PWD and their caretakers?
• I'm curious about the literature review done to make this idea come to life. What existing systems were studied? How is this different, and potentially better, than what is out there?
• What is the capacity of connections with the local organizations in Nepal and Tanzania?

Thanks for sharing the important 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!

Photo of Jason Friesen
Team

Thank you OpenIDEO for the encouraging feedback as well as the additional comments and questions.

CONTEXT: Please see our reply to the "Feedback" question above. In short, caretakers requesting assistance on behalf of a PWD could use the software as is -- all that's required is to make a phone call to a call center. For PWDs to request assistance through Beacon on their own behalf would depend on the type and degree of the disability.

WHY HASN'T THIS OCCURRED YES?/OBSTACLES IN EXISTING SERVICES: This idea is very common in wealthy countries owing to robust communications infrastructure and formal response services: PWDs are able to request specialized services through public emergency response systems, as well as through private and non-governmental services. The obstacles that have prevented this from occurring in resource-limited settings primarily include a lack of formal response systems which are due in large part to a lack of appropriate communications technology: Emergency response technologies used to coordinate efforts in the wealthiest countries are typically developed for landline-based communities; prior to the proliferation of mobile phones, available emergency response technologies were inappropriate and/or unaffordable to most resource-limited communities. With Beacon, we've circumvented these outdated technologies to design a fully automated dispatching system that can be used on any mobile phone, with or without internet, and can be scaled for a fraction of the cost. https://trekmedics.org/wp-content/uploads/2017/03/white-paper-beacon_-final_trek-medics.pdf After Beacon has been implemented, the main obstacle in scaling is ensuring that appropriate and adequate patient transport vehicles are available where necessary (ambulances and other patient transport may not always be necessary when services can be rendered in the home - e.g., community-based rehab; quality of life care; in-home care)

LIVING CONDITIONS OF PWDs: Beacon was designed to be effective irrespective of socio-economic status. We have seen firsthand how Beacon can be of benefit to an epileptic patient in NYC as much as it could in rural Africa - rapid response by trained caretakers is needed in both cases. Because the platform can be used on any mobile phone, responders involved in the network could be advanced paramedics in ambulances with lots of training and equipment, or they could be an untrained community member who has a van available to transport PWDs to a rehab appointment, or they could be a caretaker who needs some extra help in turning a bed-ridden patient to prevent bedsores; the callers could be professionals or family members, or it could be the PWD requesting assistance on their own behalf (i.e,. if a person in a wheelchair fell out of their chair and needed help to get back in). Our platform enables communities to leverage the resources they have to meet the specific needs they are faced with.

USER-CENTERED DESIGN: We developed Beacon to be accessible to responders who may have limited literacy and who may/may not have formal vehicles (like ambulances) equipped with high-tech dispatching technologies, so that anyone with training and a mobile phone can actively participate in local response networks. The area where we see definite room for improvement is in how persons with significant physical, cognitive and/or psychological disabilities could access the platform to request assistance on their own behalf. This would largely entail adding features that could only be utilized through a smartphone - e.g., voice-initiated prompts (like Siri), Morse Code plug-ins, video calls and sign language, color contrast and character size, WACG2.0 et al.)

MODEL: People join the network as responders because they are motivated to take an active role in their community's public health and safety; they often tend to be individuals who come into direct contact with beneficiaries on a regular/daily basis through work and/or family; they tend to be young adults who are active and eager for new opportunities to develop their skills and gain professional experience; they generally place great value in community service and supporting people in need. Incentives offered are typically non-financial (e.g., free phones and credits; uniforms and prestige; professional development; health insurance et al).

LITERATURE REVIEW: We've done extensive research focused on the role and impact of time in delivering care to patients with acute medical conditions. Given the higher risk vulnerability for PWDs, we see inclusive services as a natural next step in community-based response networks. We think that our approach is unique because it's focused on leveraging available resources, and not dependent on solutions used in wealthy countries.

CONNECTIONS: We function as an NGO with a SaaS model, providing access to our software and technical advising for established partners, but not assuming control of local operations.

Photo of Jason Friesen
Team

CONNECTIONS (continued): Our work and partnerships are focused on developing prehospital emergency care systems -- work which regularly brings us and our partners into contact with individuals with new, short- and long-term disabilities, particularly resulting from road traffic injuries. Nonetheless, there are always other local organizations with deeper involvement working with PWDs with whom we could work to build and run inclusive response networks -- just as we work with ambulance agencies and fire departments to build and run prehospital emergency response systems.

With support through the Amplify program, we would be open and willing to establish new partnerships with other disability organizations in any country, including in Tanzania where we have existing programs.

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