Monika Tóthné Almássy

Monika imagines a future where access to education is not a privilege just for healthy children. In order to design this future, she built the Hospital School Foundation which bridges the gap between the different actors who are responsible for the education and well-being of sick children. Monika also brings in new actors to the system, mainly young volunteers with high motivation to change the system, to support the pillars of this holistic work.

The importance of having school as a routine activity in a child’s life is often overlooked. It is usually not only a place of academic learning but also their main socialization platform with peers as well as the rest of society. As soon as a child is diagnosed with long-term sickness, be it cancer or a severe case of borderline syndrome, they lose this routine immediately which creates a significant psychological toll on them on top of the existing health issues. This problem has a ripple effect in society, affecting the families, schoolteachers, and hospital teachers of the sick child. In order to support these kids who involuntarily dropped out of this system, Monika built the Hospital School Foundation, a holistic support institution for all actors involved.

This is a problem at the intersection of many systems and many different subgroups from society. Thus the solution must work on various levels, affecting the diverse groups’ lives positively. The uniqueness of Monika’s idea lies behind its holistic and yet modular nature, making it a collection of best practices for Hungary and beyond. Together with their experts, the team design and produce new material for the education of sick children and introduce this material to existing hospital teachers and ed-schools. They also recruit volunteers from high schools and universities: high school students work with parents to support them and keep track of progress whereas university students work with the kids to support their education as well as the extracurricular activities. They recruit health staff at pediatric hospitals and regular teachers at school to be informed about the issues of the beneficiary group and to help the kids and their families as much as they can throughout the transition. Thanks to this work, all professionals and decision-makers in the system are better educated, the parents are better supported, the children have long-term goals in regard to their education, and the young volunteers become part of a system changing movement.

Bringing all of these unlikely allies together, Monika aims not to stop at Hungary and scale the model internationally. Her next steps include building a methodological center for adults working with sick children, and then to train other organizations in CEE and the Balkans to adopt their model to reach the sick children in those regions. Thanks to the modular nature of the idea, Monika believes the parts of it could be easily adapted to different contexts.

There are 68 million children at school age in Europe, 1 million of whom currently reside in Hungary. Although there is no official European data showing the number of children who, due to illness, have not been to school for six months or more, Monika estimates the ratio to be around 5%. This translates to roughly 3.4 million children being away from their school, teachers, and primary socialization environments for more than a semester. Education systems all around the world are designed for the mainstream; they cannot be easily altered according to the special needs of un-healthy, minority, or refugee children.

There are approximately 50,000 kids in Hungary who have not been to school for more than six months. It goes without saying, even once their treatment is over, these children can fall behind and drop out of the education system in the long run. This problem not only affects the children themselves but also their caregivers and the wider community in general. Siblings and parents are found to be the most affected by this issue as it creates a psychological toll on an already struggling family. The health professionals are not trained or obliged to offer these children pedagogical care at the health institutes. Health systems are usually not concerned with the psychological toll on patients while they go through a long-term treatment. Most health institutions are not designed for child patients or their caregivers.

Public school teachers are usually eager to help their sick students, but there is no defined processes for them to keep their students engaged through online channels, or to educate the teacher about the needs of a sick children who might be returning to the school. As of 2022, Hungary is struggling from a lack of educators, even for mainstream education. The children in treatment go through a psychologically challenging process for not only being stuck at a hospital or home but also being kept away from their usual schedule which includes education and socialization at school. When a child gets back to education after a treatment, neither their peers nor their teacher might be aware of their special needs. The child could still be using medication and there could be various side effects that can affect their daily behavior at class. After a period of being away from school, they might have difficulties in adapting to the environment. Families struggle as they try to ensure the physical health as well as the psychological wellbeing of their kids alongside answering to their educational needs.

Monika Tothne sees three stages in a child’s treatment process and designs solutions for each of these stages: Hospital Treatment, Home Treatment, and Back to School.

During a child’s time at a hospital, some support for education is offered by most states including Hungary. Specifically trained hospital teachers spend 5-10 hours a week with each age group to narrow the gap between the sick kids and their peers continuing the school. Of course, compared to the 30-40 hours of school time that a healthy child gets, the time of hospital teaching is not adequate or enough. The first element of Monika’s work is to update this existing system. Once a hospital teacher herself, she saw that the current system is outdated and/or not designed right for specific age groups.

Monika and her team not only provide hospital educators with new content, but they also train these professionals to provide better support for the children’s development. The team recruits and engages many education experts in this process to design specific curricula, propose additional activities, and adapt existing resources for hospital teachers. In this process, the team also recruits healthcare professionals as their allies, and these professionals will now educate new families starting a long-term treatment for their child to reach out to the foundation and the related hospital teachers.

Another gap Hospital School Foundation fills is the education of sick children who continue their treatment at home. Hospitals and schools, although their educational program is not designed for sick children, are institutions where the state or civil society can make sure children attend some educational activities in order to keep learning and socializing. As soon as home treatment starts, neither the kid nor their family is visible to the system anymore. For this stage, Hospital School Foundation recruits university volunteers to work with children and high school volunteers to work with their parents as well as helping with curricula development. While university volunteers are key in providing the children with extracurricular activities and additional academic practices to minimize the gap with their peers, high school volunteers are key to keep in touch with wider family, identifying their needs, and keeping track of the overall progress. They also inform the foundation about the emerging needs and the impact of the foundation’s work on the family. The COVID-19 pandemic was actually an opportunity according to Monika to improve the work at this stage. As most schools went online for their classes, the foundation’s volunteers immediately collaborated with teachers to include their sick children in some of the classes. Even as the pandemic lockdowns ended, the foundation kept on encouraging teachers to connect with their students at home via online tools, to keep up the connection with their classmates.

Once the child is ready to go back to school, Hospital School Foundation volunteers organize a meeting between the parents, the healthcare professionals who are knowledgeable about the child’s condition, the hospital teacher, and the schoolteacher to prepare for the transition. These meetings serve as a space for professionals to update each other about the most recent months of the child’s life and to prepare the schoolteacher for their future needs. The volunteers keep supporting the schoolteacher and the family until the child is fully onboard with the mainstream school life.

To make this model sustainable and easily scalable, Monika designs a system that goes beyond the Hospital School Foundation’s remit of control. She believes, for an inclusive and practical system to be built, all stakeholders, especially the public institutions, should be a part of the solution. New policies, processes, and audit mechanisms are needed to reach the ideal stage for the education of sick children. Monika defines their system as a high-end support system based on tested solutions and aims to bring transparent segregation of duties and accountability among stakeholders.

Through health professionals and hospital teachers, Monika built partnerships with state hospitals. With the help of families and in partnership with schoolteachers, Monika also managed to introduce this model to mainstream schools which could be the biggest partners of families during the treatment process. The team also works with ed schools to educate the new generation of teachers about this issue, to build a master’s program for hospital teachers, and to recruit students as volunteers. She is already in conversation with the ministries of health and education, supporting them to adopt basic principles that would diminish the difference in the quality of education for sick and healthy children. Monika is also a part of many international coalitions and professional groups from which she can transfer good practices. She also aims to influence other countries with similar budget restriction for the educational sector and lack of attention on sick children in joining this movement such as Romania and Bulgaria.

To this date, Hospital School Foundation worked closely with 1,000 children, getting help from 2,500 young volunteers, and developing 260 different kinds of curricula to support these processes. The foundation is in partnership with 13 departments from seven universities for volunteer recruitment and ed-school influence work. All state hospitals support their operations, especially while reaching children.

Monika has always been interested in the education field, especially teaching. Although she graduated from a business school and began working in international trade, she immediately left her career shortly after graduation to go back to her elementary school to help teachers. After working in the sector in various positions, when she was working to teach Hungarian grammar and literature, her firstborn got sick and required treatment at hospital. In that process, she experienced the issues of hospital parents first hand and met with many likeminded mothers at that time. She also encountered a new profession – hospital teaching. This profession required an extensive knowledge of the children’s situation and working with different age groups at once. Impressed by the role of hospital teachers in a sick child’s life, Monika became a hospital teacher herself.

In the following years, she observed the issues and opportunities within that system closely and became more and more active in professional groups to collaborate with other hospital teachers. There came a critical point in 2014 when Monika saw they cannot affect change anymore, by simply working as enthusiastic parents and teachers. That is when she brought together her founding team to start a systemized intervention in the system.