Count Me In

Proper nutrition and safe feeding during early childhood lay the foundation for lifelong health and wellbeing, yet the complex nutrition and feeding needs of children with disabilities and children living outside of family care are not always met through primary health care. Children with disabilities are three times more likely to be malnourished than typically-developing children, and SPOON has found rates of malnutrition as high as 93% for children in institutions. In the low- and middle-income countries where SPOON works, this malnutrition is usually driven by a lack of health services adapted to the unique needs of these children, as well as limited support and training for their service providers and caregivers. While service providers and caregivers often have the best intentions to provide safe and nurturing care, many lack the guidance, resources, and structure to do so. Without solutions that empower those who care for vulnerable children to improve both what and how they are fed, they are at high risk for malnutrition. Globally, an estimated 290 million children have a disability, and 10 million live outside of family care. Due to the intersection of disability and lack of adapted health services, SPOON estimates that 250 million children worldwide are at particularly high risk for malnutrition and the resulting delayed development, lifelong poor health, and early death. Despite this extreme need, significant gaps in data on these children have effectively rendered them invisible in the global health sector.

Count Me In is a web-based digital health app solving malnutrition and feeding difficulties for children with disabilities and children living outside of family care in low- and middle-income countries. Count Me In allows trained service providers (i.e., community health workers, rehabilitation workers, physicians, nurses, and social workers) to assess and monitor children’s health over time, sustainably integrate best practices into their systems of care, and support caregivers to safely feed and nourish their children, resulting in improved growth and development. The data that service providers collect can be analyzed through comprehensive, built-in reports, providing support for clinical decision-making and monitoring at the site level. SPOON then leverages the anonymized data collected across our global programs to advocate for funding, policies, and systems towards improved equity and better nutrition for vulnerable children, ensuring that they are seen and counted in the global health sector.

Count Me In is designed specifically to be used by service providers who support children with disabilities or children living in residential care. The app is built around SPOON’s training curriculum focusing on nutrition, child development, feeding, disability, and growth. Once service providers receive training, Count Me In assists them to monitor individual children across three core modules: mealtime, growth, and anemia. Each module includes educational content, assessment tools, and specific recommendations for intervention and contributes to an individualized care plan for each child.

In the Mealtime module, Count Me In guides service providers to screen children for feeding difficulties. It recommends specific feeding interventions related to positioning, safety, efficiency, skill-building, and social development. When appropriate, the app makes recommendations for caregivers to use specialized techniques for feeding children with disabilities. In the Growth module, Count Me In maintains an individualized schedule for each child’s growth monitoring. It prompts service providers to track multiple key measurements, plots the results on the World Health Organization’s growth charts, and uses sophisticated logic to interpret the results. It flags any concerning measurements and prompts service providers to schedule a follow-up assessment. Finally, in the Anemia module, Count Me In prompts for anemia screenings and provides instructions for measuring hemoglobin. It interprets test results and, if the child is anemic, recommends supplementation and schedules the next follow-up screening.

Count Me In is built for scale, and to date it has been translated into six languages and adopted in sites across eight countries spanning Africa, Asia, and Eastern Europe. It is architected as a web app designed for use in low bandwidth contexts. It relies on simple technologies, is accessible to users with very modest mobile technology, and it has been designed with accessibility best practices in mind. It was designed based on SPOON’s extensive experience working with caregivers around the world and, with their active participation, it has continually evolved since its launch. It is optimized for the real-world contexts that its users inhabit. By providing structure and process for monitoring the growth and nutrition of underserved children, delivering clinical recommendations powered by artificial intelligence, and supporting decision-making at the site level through comprehensive reports, Count Me In is an effective and unique solution that supports the primary health care of children with complex needs.

Count Me In serves those who care for two populations of children with high rates of malnutrition: children living outside of family care (i.e., residential institutions) and children with disabilities. Children are institutionalized for a variety of reasons that include poverty, family breakup, disability, and lack of community-based, specialized health services. Children living in institutions experience delays in emotional, physical, and neurological development due to limited opportunities for attachment and stimulation, sub-optimal diets, poor hygiene, and unsafe feeding practices. Children with disabilities, whether living in institutions or in their homes, are especially vulnerable and experience stigma and lack of services adapted to their unique needs, such as specialized feeding techniques or adapted growth monitoring practices.

These two groups of children often require specialized nutrition and feeding care, but they are largely left behind by global nutrition efforts and training structures. Even further, these children are also often overlooked on a health systems and policy level. Many of the services that children need are governed by policies, budgets, and national strategies. Policy makers and funders use data to guide decision-making around key services that children need. However, surveys often either do not include these children or do not collect data on disability or family care status. Without comprehensive data, the needs of these vulnerable children are overlooked by policy makers and funders.

The lack of inclusion of these children stands in stark contrast to their level of need, so SPOON developed Count Me In as a concerted effort to fill this gap. Count Me In meets the need for solutions that facilitate the delivery of quality, adapted nutrition and feeding interventions that address malnutrition for children with limited access to specialized treatment and care. It provides service providers, administrators, policy makers, and funders with practical, up-to-date, and actionable insight into the feeding and nutrition needs of historically underrepresented groups of children and the most effective solutions to reduce malnutrition and improve their developmental outcomes.

Mishelle Rudzinski and Cindy Kaplan co-founded SPOON in 2007 after they each adopted children severely impacted by malnutrition. Through this experience, they identified a previously unrecognized gap in nutrition and feeding services for children in residential institutions. Realizing that no organization addressed this issue, they established SPOON. Today, SPOON is the only organization dedicated solely to transforming nutrition and feeding for children with disabilities and children living outside of permanent family care. With 15 years of experience addressing feeding and nutrition for these specific groups of children; our expertise in nutrition, disability, and digital health; our vision for scale; and our highly collaborative approach, we are well-positioned to deliver and scale Count Me In.

SPOON’s strategy is rooted in partnership and collaboration. We form strategic partnerships with local agencies, organizations, and government entities to ensure that our programs are locally owned and sustained. We complete initial needs assessments for each new project in tandem with our local partners to ensure that our programs are adapted to the local context and meet the most urgent needs. We then strengthen the capacity of our partners so they deliver training, monitor projects, and encourage service providers and caregivers to employ best practices in feeding and nutrition. Our projects are structured so our partners can own and run the programs, reaching out to us only for technical assistance as needed once training is complete. For example, we are in the final stages of transferring leadership of our long-running project in Zambia to our local partner there, Catholic Medical Mission Board Zambia (CMMB). CMMB is in charge of supporting the 15 sites there that are currently using Count Me In, as well as expanding the app’s use by running trainings for new sites. They also ensure that our project has had strong buy-in with multiple government ministries.

We also work with our local partners to ensure that beneficiary feedback is incorporated into the design of our tools and programming. The idea for Count Me In was initially conceived after a partner in Kazakhstan told us how time-consuming and inefficient it was to travel from city to city to collect monthly feeding assessments for the children in our program. She needed updated information to inform the next steps of the program, but she spent more time traveling than training and supporting service providers. She also wanted a way to share the assessment data without having to translate from Russian to English and back to Russian so she could quickly incorporate recommendations from SPOON’s nutrition and feeding specialists.

Count Me In’s on-going design changes have been informed by extensive partner interviews to learn what is working, what is not, and what outstanding needs exist. For example, feedback from multiple partners in Zambia over the past five years has led to significant overhauls to the way Count Me In approaches mealtime assessment and screening for feeding difficulties. Users helped streamline the process, pointing out that it had been too time-consuming, and helped adapt portions related to mealtime positioning to better account for common Zambian practices. In large part, beneficiary feedback prompted SPOON to identify a need for an expanded version of Count Me In with offline capabilities (see below).

In addition, SPOON seeks to engage those whose experiences and expertise are most relevant to the needs of the community we serve in our internal decision-making. SPOON’s board and staff include persons with disabilities, persons who were separated from their families of origin at young ages, and persons who experienced malnutrition and/or feeding difficulties.

SPOON’s organization-wide goal is to use Count Me In to assess the feeding and nutrition of 10,000 children over the next two years. We believe that a robust dataset on children who traditionally have been uncounted is essential to capture the attention of global decision-makers and lead to inclusive funding, policies, and programs for the estimated 250 million children who could benefit from access to high-quality nutrition and feeding care around the world.

When we launched Count Me In in 2016, we specifically designed it to be piloted with service providers in residential institutions with reliable access to WiFi. However, since its inception, both the app and our vision for its use have evolved considerably. In order to grow our reach and achieve catalytic impact, we have identified an opportunity to expand to community markets, including community clinics serving children with disabilities who live with their families. The recommendations, support, and structure offered by Count Me In are applicable across contexts and do not need to be limited to residential institutions. However, the way the app is currently designed is a barrier to growth.

We aim to transition Count Me In to a Progressive Web App with a more inclusive and mobile-friendly interface, enabling its most critical functions to work offline and improving the app’s usability and reliability. This expansion of the app’s capabilities will allow SPOON to reach entire large markets that are currently off-limits to our interventions and support service providers at community clinics to inclusively meet the needs of children who aren’t normally served. As a result, we will be able to use Count Me In to generate a more comprehensive picture of the needs of vulnerable children in low- and middle-income countries. Additionally, this will open the door for SPOON to partner with large INGOs with a broader reach to impact more of the 250 million children in need of adapted nutrition and feeding support.

We are applying to this Challenge to seek support for this next phase of Count Me In’s growth, including the development of the Progressive Web App; cultivation of strategic partnerships; training and supporting partners as they deploy the new version of Count Me In; and data analysis of the robust information collected through longitudinal use of Count Me In.

Despite the ubiquity of digital health apps, no other digital solution focuses on the unique feeding and nutrition needs of children with disabilities and children outside of family care. Unlike mainstream nutrition services, which typically focus on what children are fed, Count Me In looks at how children are fed as well, holistically addressing the root causes of malnutrition. Key innovations within the app include simplified interpretations and recommendations of growth measurements and growth charts, internal logic for the treatment of anemia, and ground-breaking logic for detecting and troubleshooting feeding difficulties and feeding positioning.

What makes Count Me In catalytic is its scalability and potential for broader impact. In addition to the individualized care plans that inform primary health care, Count Me In offers indispensable, big-picture insight into the feeding and nutrition needs of underserved children in low- and middle-income countries around the world and the solutions that best meet these needs. The data it collects illustrate disparities in growth between typically-developing children and those with disabilities, as well as between children living in families and those living in institutional care; prevalence of feeding difficulties; changes in growth that accompany shifts in feeding practices; and where anemia is particularly prevalent during key stages of development. SPOON and our partners leverage this data to work with local health ministries, funders, and NGOs in the health, disability, and care reform sectors to systematically improve healthcare systems and outcomes for vulnerable children worldwide.

SPOON’s organization-wide one-year goal is to gather baseline data on 5,000 children in Count Me In, with a total of 10,000 children at the end of two years. Of those 10,000 children, we aim to use our new version of Count Me In to assess 3,000 children. To do so, we will engage in at least five projects across three or more countries within a year of launch that use Count Me In’s new offline capabilities.

Our five-year goal is to catalyze change in the systems that lead to inequities in nutrition for children with disabilities and children living outside of family care, including primary health care. Using our data collected both in residential institutions and across community sites, by 2027 we aim to change policies, programs, and investments that will reach at least 10 million children through the following channels:

• Influence development and implementation of at least two national policies, one global policy, and four sector-related agendas
• Inform inclusive program designs for at least three large NGOs
• Compel at least one large funding institution to shift funding practices to reflect inclusive nutrition practices

As an evidence-based organization, SPOON utilizes data to make programmatic decisions, evaluate impact, and advocate for policies that better support vulnerable children. Through our suite of quantitative and qualitative evaluation tools, we collect baseline and outcome data for the children, service providers, caregivers, and institutions impacted by our programs. We collect data from our trainees and partners through evaluations and surveys as well as through interviews conducted either in person or over Zoom. In addition, we collect data through Count Me In itself. Within the app, we can see real-time reports on the following: number of active projects, number of active sites, and number of children served. We can also see data on malnutrition rates among the children in our programs, including rates of wasting, underweight, stunting, and anemia (indicators for SDG Target 2.2). Our feeding data on individual children is detailed and includes indicators such as type and texture of food, positioning for meals, implements used, and instances of choking or other indicators of high-risk feeding. Through all of these metrics we gain insight into child health; service provider and caregiver knowledge, skills, and attitudes; and site-level use of best nutrition and feeding practices, which we then use to assess our impact.

We measure progress of our advocacy through outputs (publications, stakeholder meetings, digital campaigns, etc.), indicators of success (such as increased knowledge and support from our target audiences, recognition of the issue in public documents or statements, and inclusion in related advocacy platforms), and outcomes (changes in policies, programs, and investments). Due to the political and fluid nature of advocacy work, we balance a clear theory of change with dynamic pathways to create change.

SPOON ensures that children with disabilities and children living outside of family care have equitable opportunities to be healthy, well-nourished, and stimulated as they grow. This is only possible when their caregivers are empowered and supported to provide them with nutritious diets and to feed them safely and positively. To achieve this, we need service providers who are well-trained and qualified in nutrition and feeding specific to the needs of these vulnerable children, quality services and tools, and an enabling policy environment guided by data and evidence. Therefore, our theory of change focuses on three interconnected implementation strategies: training, service delivery, and data generation.

Training

• Activities: Service providers receive SPOON’s training on feeding and nutrition for vulnerable children and use of Count Me In.
• Outputs: Service providers gain competency in feeding and nutrition topics, counseling best practices, and the use of Count Me In.
• Short-term outcomes: Service providers demonstrate ability to identify and address nutrition and feeding concerns for vulnerable children and to counsel their caregivers.
• Long-term outcomes: Service providers mentor and train others in nutrition and feeding for vulnerable children, enhancing national capacity.

Service delivery

• Activities: Service providers use Count Me In to assess children’s growth, anemia status, and feeding and counsel caregivers on individualized care plans generated by the app.
• Outputs: Caregivers gain competency in making appropriate nutrition choices and following feeding best practices and specialized feeding techniques.
• Short-term outcomes: Caregivers feed their children a nutritionally adequate diet using safe and responsive feeding techniques; caregivers demonstrate confidence and self-efficacy in managing their children’s nutrition and feeding difficulties and building their feeding skills.
• Long-term outcomes: Children grow and develop to their full potential.

Data generation

• Activities: SPOON and partners disseminate baseline and longitudinal nutrition and feeding data and evidence generated by Count Me In to advocate to governments, funders, and other stakeholders for changes in policy, practice, and funding for vulnerable children.
• Outputs: Governments, funders, and other stakeholders gain awareness of the need and impact of nutrition and feeding interventions.
• Short-term outcomes: Governments, funders, and other stakeholders demonstrate a commitment to including vulnerable children in policies, funding strategies, and programs.
• Long-term outcomes: Vulnerable children are prioritized and included in policies, funding strategies, and programs at national and global levels.

A strong example of SPOON’s theory of change is evident in Zambia, our longest-running program, led by our local partner CMMB. So far, 99 service providers from 18 facilities in Zambia have received training and implemented Count Me In. To date, 8,236 nutrition and feeding assessments were conducted on around 923 children with disabilities and 244 children in residential care in the country. Overall, the preliminary baseline prevalence of stunting (67%), wasting (24%), underweight (59%), anemia (55%), and feeding difficulties (78%) was alarming. Over an average of 11 months, the prevalence of wasting and anemia attributed to iron deficiency decreased by 31% and 36%, respectively. Using these data, SPOON and our local partners in Zambia advocated with the Zambian Parliamentary Committee on Health, Community Development and Social Services for increased prioritization of children with disabilities and children outside of family care in the 2019 Public Welfare Awareness Scheme and the 2020 National Food and Nutrition Bill.

Count Me In is built on an open source web framework (Django) and is served by a standard AWS-based stack (data in RDS; EC2 web server; CloudFront CDN). The recommendations and care plans it generates are the result of decision-tree-based algorithms. It incorporates Social Behavior Change-based facilitation techniques to ensure our training is contextualized, assimilated, and made actionable.

Service providers use Count Me In to collect primary health care data. These are professionals who work with caregivers or children, including nurses, social workers, therapists, and physicians. Their motivation to use the app varies from site to site, but common reasons include the easy generation of growth charts, care recommendations that are easy to share with caregivers, and a structure for monitoring children’s growth and anemia.

SPOON believes that the only way we can promote equity for populations of children who have historically been excluded is to place a high value on diversity, equity, and inclusion throughout our organization. We clearly communicate to staff that we are an equal opportunity employer, we have an equal pay for equal work policy, and we give annual pay increases rather than performance-based pay increases. We have reviewed and continue to review all of our staff policies and practices with an eye to equity in order to create an environment that promotes diversity and inclusion for staff.

In 2020, SPOON prioritized becoming an anti-racist and anti-oppressive organization, starting with an equity audit by an outside organization. The goals of the audit were to analyze and evaluate the employee experience through the lens of diversity, equity, and inclusion and identify best practices that SPOON could implement to strengthen our anti-oppression and anti-racist practices, policies, and procedures. The following goals were identified, all of which have been addressed: 1) drafting a DEI statement, which will be used as a guiding principle to further support our staff, board, and community in the DEI work that we have already begun; 2) revising our hiring and board recruitment policies, including our HR manual, with a DEI lens; and 3) making our existing racial justice group (previously optional) mandatory and meaningful. Our goals for this year include comprehensive DEI training for board and staff, as well as continuing to increase the diversity of our board and staff. We particularly value staff and board members who have lived experience with issues related to our mission, including those who have experienced disability, malnutrition, and/or family separation, as well as individuals from a diverse racial and geographic background.

SPOON’s value proposition is to 1) deliver training on feeding and nutrition for children with disabilities and those living outside of family care; 2) provide tools, including our digital health app Count Me In, to service providers around the world, resulting in improved health outcomes for vulnerable children; and 3) provide meaningful data that partners can use to measure progress and make a case to funders to support their work. Key activities within our business model are the training and mentoring of service providers, which happens within discrete projects. Service providers continue to use Count Me In to independently and sustainably integrate interventions and counsel caregivers after the training phase of projects wind down. We encourage use of Count Me In after our role ends in order to ensure continued benefit for the programs as well as ongoing collection of data that can be used by both the partners and SPOON.

We partner with local organizations based in the countries where our projects take place. Revenue typically comes from a third party, such as a foundation or government grant, and is project-based. In some cases, our partners pay for projects more directly.

SPOON relies on diverse income sources to fund our work, including individuals, institutions, government agencies, and earned income. In FY21, 41% of our income came from foundations, 30% from individuals, 16% from government, 4% from corporations, and 4% from earned income. SPOON has a sound financial track record, having met or exceeded our budgeting goals since our inception. In FY22, we began an ambitious plan to expand our revenue by identifying and pursuing prospects in each of our revenue streams (individual, corporate, foundation, government, and earned income). We are particularly focused on growing our earned income revenue stream by charging organizations directly for our training and tools. We are always refining our approach to fundraising, and we are committed to growing all revenue streams to ensure that our programs are funded and our organization operates sustainably.

As mentioned above, SPOON has always met or exceeded budgeting goals. Noteworthy sources of funding include: the M.J. Murdock Charitable Trust ($256,000/3 years); UNICEF in Lesotho ($148,000) and Belarus ($115,000); GHR Foundation ($400,000/3 years); Happy Family Brands ($10,000); and over 10 individuals who give at the $10,000 or higher level each year. We have been successful in leveraging our Board's networks, our program partnerships, and our outreach materials to gain connections to additional funding opportunities.