Count Me In

We are working to increase access to and quality of health services for children under six in Lesotho, particularly children with disabilities and developmental delays. 

In Lesotho, many infants and young children suffer from malnutrition. One in three children under five in Lesotho is stunted, which is a form of chronic malnutrition. Half of these children also have anemia, mainly due to low iron. Many more children have nutrition and feeding issues that go unrecognized and unaddressed due to a gap in standardized tools and systems to assess children’s health and disability status. 

Children with disabilities and developmental delays are at particularly high risk for malnutrition. A developmental delay refers to when a child slows, stops, or reverses progress towards typical developmental milestones. Globally, children with disabilities are three times more likely to be malnourished than their peers without disabilities and twice as likely to die from malnutrition. While children with disabilities and developmental delays have the same basic healthcare needs as all children, they also often experience unique nutrition and feeding challenges—such as difficulty chewing and swallowing, difficulty sitting upright to eat, and the need for nutrient-dense meals—that require specialized care. 

Identifying disabilities and developmental delays as early as possible allows children to be matched with the services and specialized care they need sooner. Additionally, identifying and tackling nutrition and feeding issues early on can prevent the onset of more serious problems such as delayed physical and cognitive development, illness, and death.

Lesotho has made great progress in disability rights in recent years. However, there are gaps in access to care for children with disabilities and developmental delays. There is no existing system to systematically screen young children for delays, and access to impactful specialized health services and support for children with disabilities and developmental delays is limited. There is a need for standardized digital tools and capacity strengthening for Lesotho’s health and education workforce so they may identify delays early, screen for nutrition and feeding issues, and refer children to quality services that meet their needs. 

Our solution is to use SPOON’s digital health app, Count Me In, to equip Lesotho’s health and education workforce to screen young children for developmental delays and nutrition issues, resulting in a strong system to connect children and families with the inclusive health services and support they need to thrive. 

Our solution consists of three components:

1. Digital health app: Count Me In is an innovative digital health app developed by SPOON that allows service providers at health centers and preschools to screen children for risk of developmental delays and malnutrition. Based on these screenings, Count Me In generates individualized care plans for each child to assist service providers to counsel families on recommendations to improve children’s health and to refer them to additional specialized health services if needed. Additionally, Count Me In collects valuable impact data across implementation sites that can be leveraged for decision-making, monitoring, and advocacy.

2. Capacity strengthening: Through a Training of Trainers model, we strengthen the capacity of service providers throughout Lesotho’s health and education workforce. We equip:

• Nurses and teachers at health centers and preschools to use Count Me In to screen children under age six for developmental delays and nutrition issues, counsel families, and refer children for further evaluation and specialized care based on their assessed risk. 
• Specialized service providers at community-based rehabilitation clinics, physiotherapy clinics, and Organizations for People with Disabilities to identify and address feeding difficulties and to provide inclusive nutrition care tailored to the needs of children with developmental delays and disabilities.
• Community health workers to promote the importance of developmental and nutrition screening among families and to collaborate with health centers and preschools to ensure follow-up for at-risk children.

3. Data-driven advocacy: We use the data collected by Count Me In to raise awareness among key decision-makers in Lesotho about the importance of early identification of disabilities/developmental delays and nutrition issues. We use this evidence base to advocate for policy changes and increased investment in inclusive services. We also work closely with the Government of Lesotho to create a roadmap for nationwide scale of our solution and, eventually, full government ownership.

Our solution strengthens and standardizes Lesotho’s early identification system and links it with nutrition screening, bridging gaps that currently exist in healthcare access and quality care for medically vulnerable children, particularly those with developmental delays or disabilities. Ultimately, once scaled throughout Lesotho, our solution will empower communities to ensure that no child is overlooked or left behind, resulting in reduced malnutrition and improved health for children nationwide. Eventually, we hope to use Lesotho as a model for scaling our solution in other countries in the region.

Our solution primarily serves children under six in Lesotho and their caregivers. We focus on these early years because they are a critical period of rapid growth and development. When disabilities are identified too late in a child’s life, it is more difficult to provide them with the care and support they need for life-long health and well-being. Similarly, poor nutrition in early childhood can cause irreversible delays, so early nutrition is essential for children to grow, develop, and thrive. 

While caregivers are motivated to provide their children with safe and nurturing care, many lack the guidance, resources, and support to do so. This is especially true for caregivers of children with disabilities and developmental delays, who often need specialized care to meet their needs. Our solution equips service providers in the health and education workforces to counsel and empower caregivers to manage their children’s nutrition and feeding needs and support their healthy development.

To reach as many children under six and their families as possible, we equip service providers at health centers and preschools to regularly screen children for risk of developmental delays and malnutrition. Nurses at health centers are in a unique position to promote children’s healthy development because they have regular contact with children from birth until school age. In Lesotho, health centers operate “under-five clinics” where caregivers bring their children for immunizations and to have them weighed and measured on a set schedule. These visits are crucial opportunities to regularly identify issues. Preschool teachers work closely with children once they begin schooling, which provides another important opportunity to screen children periodically throughout the school year once they are a little older.

Through this approach, we will create a strong and comprehensive system to systematically assess children’s health and development during their early years and to connect families with the inclusive health services and support they need to thrive. Once scaled nationwide, this will ensure that all young children in Lesotho can access the quality care they need.

Our solution team is led by SPOON, a nonprofit dedicated to improving nutrition and feeding for children with disabilities and children without family care. SPOON strengthens healthcare systems and empowers local communities through training, technology, and advocacy. We have over 15 years of experience implementing inclusive nutrition and feeding programs in 22 countries. Over the years, we have established ourselves as a leader in our field, collaborating with local partners, governments, UN agencies, and other stakeholders to achieve sustainable impact. Our vision for scale, highly collaborative approach, and technical expertise in nutrition, feeding, child development, disability, and digital health make us well-positioned to lead and deliver our solution.

SPOON is collaborating with the Lesotho National Federation of Organisations of the Disabled (LNFOD) and the Johns Hopkins International Injury Research Unit (JH-IIRU) on our solution. SPOON, LNFOD, and JH-IIRU have worked together for several years to design and deliver our solution, and together we successfully piloted it from December 2021-June 2023 through a UNICEF Lesotho-supported project (see question below for more information). 

• LNFOD is a Lesotho-based umbrella body of organizations of persons with disabilities. Their mission is to advocate for, promote, protect, and defend human rights of persons with disabilities and their families. LNFOD has programs in seven districts in Lesotho, and they work closely with the Government of Lesotho and local councils to design inclusive programs and advance disability rights. As a local non-profit operating since 1989, LNFOD has knowledge of the local context as well as expertise in training, community engagement, monitoring and evaluation, and advocacy.
• JH-IIRU’s mission is to identify solutions for trauma, injuries, disability, and rehabilitation in low- and middle-income populations through research, collaboration, and training; influence public policy and practice; and advance global trauma and injury prevention, disability assessment, and rehabilitation services. They provide expertise in health systems reach and evaluation, implementation research, economic analysis, health policy analysis, and systems thinking.

Our solution team prioritizes community, government, and beneficiary input throughout the design and delivery of our solution. During the pilot period, we formed a local nutrition and disability Core Team made up of professionals from LNFOD, UNICEF Lesotho, and Lesotho’s Ministry of Health, Ministry of Education, and Ministry of Social Development. This team advised on our solution’s design and approach, helped secure local buy-in, and supported us to select sites to pilot our solution. During the growth phase of our solution, this Core Team will continue to guide implementation and support with advocacy. Additionally, during our pilot we conducted two focus group discussions with 16 caregivers of children with disabilities to learn about barriers to early identification of disabilities/developmental delays and access to specialized services. This beneficiary feedback informed the overall design of our solution.

We piloted our solution in Lesotho from December 2021-June 2023. The pilot was a collaboration between SPOON, LNFOD, and JH-IIRU with support from UNICEF Lesotho. During the pilot, we accomplished the following:

• Established local nutrition and disability Core Team
• Conducted five co-design workshops with key stakeholders and the Core Team
• Interviewed 42 key stakeholders about gaps and opportunities for early identification
• Conducted two focus group discussions with 16 caregivers of children with disabilities
• Developed digital tools to screen for developmental delays in Count Me In
• Developed training curriculum and guidelines
• Trained 55 district-level and five national-level lead trainers
• Lead trainers trained 40 pilot participants at health centers and preschools
• Five health centers and five preschools across two districts in Lesotho piloted Count Me In for three months

At the end of the pilot, two external evaluators interviewed 28 pilot participants to understand their experiences with Count Me In. The app was found to be acceptable, feasible, and usable for screening children for developmental and growth delays, and it can be successfully used at health centers and preschools. Pilot participants reported overall positive experiences with Count Me In, noting that it was easy to use and integrate into workflows, increased their ability to accurately assess and refer children, was received positively by parents, and provided a good opportunity to speak with parents about their children’s growth, development, and feeding. A nurse in one of the pilot districts said, “After entering the child’s information, the app analyses it and recommends that we must take the child to a certain place, [which] is very helpful. It also helped us a lot to build good relationships and communication with parents.”

Participants continued using the app beyond the pilot. To date, 504 children have been screened in Count Me In, and more than 1,700 screenings have been completed by participating health centers and preschools. Count Me In data from the pilot showed high levels of stunting (30%) among children 0-6 years old and high risk for developmental delays among children 0-2 years old (23%).

This pilot proved that our solution has immense potential to benefit children and their families across Lesotho. We are now in the growth phase, as we aim to scale our solution to five districts in Lesotho over the next three years. 

With our expertise in disability, nutrition, and feeding, we have developed an effective solution that strengthens and standardizes Lesotho’s early identification system and links it with nutrition screening, bridging gaps that currently exist in healthcare access and quality care for medically vulnerable children. 

We are keen to scale our solution throughout Lesotho and in other countries to ensure that no child is overlooked or left behind, resulting in reduced malnutrition and improved health for many more children. To advance our reach and transform the lives of more children, families, and communities, we are seeking mentorship from MIT Solve on business model, replication design, risk assessment, and quality assurance. 

Our solution is innovative because it connects the dots between nutrition, feeding, and disability by linking early identification of disabilities/developmental delays with screening for malnutrition and leverages technology to bring this approach to life and push for further inclusion.

Malnutrition during early childhood increases the risk of developmental delays. Likewise, developmental delays and disability can make it hard for children to meet their nutritional needs, predisposing them to malnutrition. Therefore, assessing young children’s growth and feeding is important to ensure they reach their developmental milestones, and identifying children who might be at risk for developmental delays is important to ensure children and families have access to the support they need to prevent malnutrition. The benefits of early identification of disabilities/developmental delays on long-term health are well-documented, but linking early identification with nutrition screening in this way is innovative.

Count Me In is a one-of-a-kind tool that brings our innovative approach to life and integrates it into primary care settings to comprehensively reach children. Count Me In allows service providers to assess children’s health as well as their development, counsel caregivers to improve children’s health, and connect families of children at risk of delays with the specialized care they need (see question below for more information on Count Me In’s functionalities). Leveraging technology in this way systematizes and streamlines our innovative approach, fills known gaps in access to health services, and improves quality delivery of care to young children and their families. 

In addition, Count Me In generates powerful and unprecedented data that validates our approach and can be used by SPOON and our partners to push for more inclusive policies and services. Significant gaps exist in data on children with disabilities; to our knowledge, data on the nutritional status of children with disabilities in Lesotho do not exist. This has left them uncounted by and excluded from the global health sector, leading to a lack of systems to support these children. Count Me In fills this gap. The comprehensive data collected by Count Me In provide indispensable insight into the feeding and nutrition needs of these children, demonstrating both the extent of the issue and the solutions that work to eradicate malnutrition. A key component of our solution is using data generated by Count Me In to raise awareness among key decision-makers about the importance of early identification linked with nutrition screening and to advocate for policy changes and increased investment in inclusive services.

As we continue to grow our solution and scale Count Me In nationally, we will use Lesotho as a model for other countries in the region. 

Our theory of change is grounded in evidence that early identification and interventions improve child and parental outcomes. We know that 1) all children can grow, learn, and thrive when provided with nurturing care, adequate nutrition, and early childhood development opportunities; 2) nutrition and development in infants and young children are strongly interlinked; 3) identification and management of delays at the earliest age possible maximizes outcomes like learning, eating, and self-care and reduces the need for long-term rehabilitation; 4) healthcare and education providers have regular contact with children and are uniquely positioned to monitor their progress, coordinate their care, and counsel their families; and, finally, 5) families are the constant factor in children’s lives and should be recognized as key actors and empowered to support their child’s growth and development.

Thus, our theory of change focuses on three interconnected implementation strategies:

1. Capacity strengthening

• Activities: Service providers receive training on early identification of disabilities/developmental delays linked with nutrition screening and use of Count Me In.
• Outputs: Service providers gain competency in feeding and nutrition topics, counseling best practices, referral systems, and the use of Count Me In.
• Short-term outcomes: Service providers demonstrate ability to identify and address nutrition and feeding concerns and risk of developmental delays for children and to counsel their caregivers. 
• Long-term outcomes: Enhanced national health and education workforce capacity.

2. Service delivery

• Activities: Service providers use Count Me In to conduct developmental screening, growth assessment, and feeding assessment and counsel caregivers on individualized care plans and referrals generated by the app.
• Outputs: Caregivers gain competency in making appropriate nutrition choices, following feeding best practices, and seeking additional specialized services for their children as needed.
• 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, building their feeding skills, and supporting their healthy development. 
• Long-term outcomes: Children grow and develop.

3. Data generation:

• Activities: SPOON and partners disseminate baseline and longitudinal nutrition and feeding data and evidence generated by Count Me In to advocate for changes in policy, practice, and funding.
• Outputs: Government, funders, and other stakeholders gain awareness of the need and impact of early identification linked with nutrition screening.
• Short-term outcomes: Government, funders, and other stakeholders demonstrate a commitment to inclusive policies, funding strategies, and programs. 
• Long-term outcomes: Children with disabilities and developmental delays are prioritized and included in policies, funding strategies, and programs at the national level.

Our overall goal for the next three years is to scale up our solution in five districts in Lesotho and support a full handover to the Government of Lesotho. We will achieve scale and sustainability through three interlinked objectives:

1. Improve access to and demand for quality, inclusive basic and specialized health care focused on early identification of disabilities/developmental delays linked with nutrition screening
2. Align tools and training with national systems, including integrating capacity strengthening curriculum with existing training structures and Count Me In with national digital infrastructure and tools
3. Strengthen inclusive policies and investments through evidence-based advocacy to support government-led scale and accountability

Our three-year scale indicators and targets across five districts include the following:

• 97 health centers and 97 preschools using Count Me In to screen children for developmental and growth delays
• 90 master trainers, 582 primary health care providers, 1,940 preschool teachers, and 4,707 community health workers engaged through capacity strengthening in early identification and nutrition screening
• 50 service providers providing specialized nutrition and feeding services to children with disabilities and children with feeding difficulties
• 830 community sensitization meetings conducted by community health workers on inclusion, the importance of early identification, and availability of specialized health services
• 50 national and sub-national key stakeholders engaged through advocacy
• 127,544 children 0-6 years reached
• 127,544 primary caregivers reached

Count Me In is the core technology powering our solution. Count Me In is a web-based app that guides service providers through three types of assessments for children: developmental screening, growth assessment, and feeding assessment. Based on these assessments, Count Me In creates care plans for each child to help service providers counsel caregivers. These care plans include an explanation of the assessment results, recommendations to improve nutrition and feeding, referrals if needed, and scheduled follow-up visits. Count Me In also generates reports showing how children across sites are doing over time. These reports can be used for quality improvement at health centers and for advocacy for better nutrition and feeding for children.

Developmental screening:
Developmental screening helps service providers track a child's progress in reaching developmental milestones. Developmental screening also involves asking caregivers about any concerns they may have regarding their child’s development. By conducting developmental screening, services providers can identify delays in a child's development, allowing them to connect children with the specialized care they need early on.

We built two validated developmental screening tools into Count Me In during the pilot period of our solution: the Survey of Wellbeing in Young Children for children under 2 years old and the Washington Group/UNICEF Child Functioning Module for children ages 2-6 years. When a service provider conducts a developmental screening, Count Me In is programmed to bring up the appropriate screening tool based on the child’s age, automatically perform scoring, and generate recommendations and referrals to share with the child’s family.

Growth assessment:
A growth assessment helps service providers determine if a child is growing as expected. It involves weighing and measuring a child to see whether they are gaining enough weight and height each month. A child’s growth may slow down when they do not receive enough nutrition or when they are fed poorly. Monitoring a child’s growth and identifying concerns early on helps a child stay on track. 

Count Me In guides service providers to enter growth measurements. The app then calculates scores to determine malnutrition risk and generates World Health Organization (WHO) growth charts automatically within seconds. WHO growth charts are used by service providers all over the world. However, unlike paper charts, Count Me In provides interpretations of the results, flags concerning growth, and makes recommendations for a care plan.

Feeding assessment:
A feeding assessment helps service providers evaluate how a child is fed or how they eat. It involves learning about the caregiver’s feeding techniques and the child's response to feeding and identifying challenges or concerns. How a child is fed plays a crucial role in their growth and development. 

Count Me In guides service providers through a series of questions about a child’s feeding, provides recommendations to encourage safe feeding practices, and alerts the service provider when a child may be having difficulty with feeding and needs further support.

SPOON will lead our solution team. Six full-time staff from SPOON and one independent consultant will work on the solution. 

LNFOD will act as an implementing partner for our solution team, with three full-time staff from LNFOD working on the solution.

JH-IIRU will act as a technical partner, with one full-time staff member working on the solution.

SPOON launched Count Me In in 2016; since then, it has been used to support thousands of children with disabilities and children without family care across SPOON’s worldwide programs. Our solution to strengthen early identification linked with nutrition screening in Lesotho using Count Me In began with our pilot in December 2021. SPOON developed Count Me In’s innovative developmental screening module during this pilot phase.

To promote equity for children who have historically been excluded, SPOON must place a high value on diversity and inclusion throughout our organization. We engage individuals who have experienced disability and/or malnutrition on our staff and board, and continuing to diversify our team is key priority for SPOON’s board nominations committee as well as SPOON’s staff leadership. In addition, we center local partners and beneficiaries in our program design and implementation.

SPOON has created a formal Diversity, Equity, Inclusion, Justice, and Belonging (DEIJB) commitment, which is provided to and signed off on by all board and staff members. The commitment is as follows:

“SPOON envisions an inclusive world where all children are valued and nourished. In order to achieve our vision with effectiveness and integrity, we must acknowledge the systemic and historic inequities - such as racism, ableism, and colonialism - that are pervasive in our world and in our sector. We recognize the potential for SPOON to perpetuate these structures, and we challenge ourselves to proactively identify and transform systems of oppression within our organization and the broader world.

In collaboration, SPOON’s staff and board commit to integrating Diversity, Equity, Inclusion, Justice, and Belonging (DEIJB) into all layers and areas of our work, team, and organizational structure, including:

1. Internal Affairs (finance, administration, HR)
2. Programs (projects, partnerships, advocacy)
3. Development (fundraising, communications)
4. Governance (recruitment, leadership)
5. Strategy (vision, mission, strategic plan)

We will continually set concrete, measurable goals towards this commitment in order to fully realize our mission. This commitment will evolve as we continually learn and grow.”

SPOON’s DEIJB Task Force, a committee comprised of both board and staff representatives, drives the implementation of this commitment. The Task Force, which meets monthly, creates space for discussion, motivates staff and board, and supports intentional actions (e.g., annual board and staff goal setting) to integrate DEIJB into all aspects of SPOON. The Task Force is also responsible for brainstorming and implementing ongoing opportunities to more deeply engage staff and board with DEIJB (e.g., training, education, and other activities).

SPOON’s operational model is impactful, collaborative, and cost effective. We do not set up a permanent presence in a country, but instead we work with and through partners to ensure long-term ownership and sustainability. We provide training, technical assistance, mentoring, and consistent targeted follow-up to strengthen our partners’ capacities to continue the work independently. Our model is based on human-centered design principles, and we work in close partnership with organizations of persons with disabilities to ensure all components are designed with them and not for them.

Our project-based revenue typically comes from a third party, such as a private foundation or a government grant. We also seek out contracts with governments and other INGOs to implement our work. 

• Strengthening disability inclusion capabilities of staff/partners via targeted and consistent training, mentoring, and technical support
• Filling evidence gaps on nutrition, feeding, and disability to inform inclusive policies and programs and global health financial investments
• Reducing malnutrition rates among children with disabilities and those living in alternative care or reintegrating into family care
• Developing and implementing advocacy initiatives to promote equitable and inclusive nutrition practices
• Leveraging digital solutions to empower stakeholders to increase early identification of disabilities and developmental delays and improve nutrition among these children

Service providers continue to use Count Me In to independently and sustainably integrate interventions and counsel caregivers after the completion of the capacity strengthening phase of our projects. We encourage use of Count Me In after our role ends to ensure continued benefit for children and caregivers as well as ongoing collection of data that can be used by both partners and SPOON.

SPOON relies on diverse income sources to fund our work, including individuals, foundations, government agencies, and contracts/earned income. The pilot phase for our solution was supported by UNICEF Lesotho, and we have received private foundation funding for a portion of post-pilot activities. We continue to seek support from varied revenue streams to fully fund the growth phase of our solution. 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.

In the longer term, we plan for our solution to be fully handed over to and owned by the Government of Lestho, which will ensure its sustainability. Throughout the pilot, we collaborated with Lesotho’s Ministry of Health to discuss how to integrate Count Me In into the local healthcare system. As the Ministry is currently digitizing health records, our solution complements their ongoing efforts. Moving forward, we will continue to work closely with the Ministry to eventually transition Count Me In’s hosting and maintenance to the government. We have built scale-up and sustainability planning into the key objectives for our growth phase for our solution.