Olga Ślepowrońska

The lives of caregivers of persons with disabilities have been reduced to helping others, and their own needs and potential have been dismissed. Olga created a national network of support for caregivers to back them up and free their potential.

Over two million people in Poland take care of their dependent family members. At least 10% of them do it full-time. Yet caregiving is an unpaid and undervalued job. The global monetary value of unpaid care work for women over 15 is estimated at least $10.8 trillion annually. This is three times the size of the world's tech industry, according to the OXFAM report "Time to care." Despite the rewarding nature of caregiving, the nature of the job can leave individuals vulnerable and prone to neglecting their health and well-being.

As an independent mother, Olga understood that primary caregivers, persons assisting an underaged child or a sick, elderly, or disabled relative, needed the power of social networks around them to take care of their well-being. Through her organization Mudita, Olga highlights caregivers’ vital role in society and normalizes the need to support those who tend to others. Olga has created a national network of support for family caregivers in Poland, mobilizing a vast reservoir of resources, including respite care, professional services, and material assistance. Through this expanded network, she transforms how government policies treat caregivers and their families.

Olga has a comprehensive approach to supporting caregivers of persons with disabilities, focusing not only on respite care but also on the everyday logistics and advocacy efforts. These are the main three streams of Olga’s strategy. Mudita established a respite care network in more than half of the regions in Poland, relying heavily on volunteers and local coordinators, to provide respite support, which fosters a sense of community and shared responsibility for supporting families with disabilities and normalizing caregivers' needs. Everyday logistics include solutions like the "Power Meals"¾ a program that helps reduce food waste and provides healthy food options for families immobilized by disabilities who may have difficulty accessing nutritious food. A high degree of community involvement is seen in all of Mudita's strategy streams. "Power Meals" are volunteer opportunities and allow local vendors to join. By engaging the regular citizens, Olga was able to build strong social support for legislative changes, allowing for better financial and job-market regulations for the primary caregivers.

The potential of Mudita's volunteer network was tested in February 2022, when 6 million war refugees from Ukraine entered Poland. This group included many primary caregivers and their families. Both the Polish government, struggling to serve its citizens so far, and international NGOs like the UN Refugee Agency (UNHCR) were prepared to provide the relevant support. That's why Mudita opened their reception points in Krakow and Warsaw, dedicated to caregivers and persons with disabilities. Mudita's 007 Team for Special Tasks still supports people in need with information, legal advice, and social assistance.

Olga, Mudita, and thousands of volunteers contribute to the well-being of family caregivers, ensuring that their energy is transformed into a feeling of agency and contributes to the well-being of the primary caregivers. In Olga's opinion, this vector direction change influences the social dynamics and, in the longer term, should create stronger social cohesion in Poland for all its inhabitants.

More than 2 million people in Poland serve as primary caregivers for their dependent family members, with at least 10% doing so full-time. Caregivers spend an average of more than 24 hours a week assisting their loved ones. While this can be a deeply rewarding experience, it can also leave them vulnerable to neglecting their own needs. Caregivers often suffer from lack of sleep, poor diet, little exercise, and isolation from social activities, leading to poor health outcomes. Studies have shown that between 40% and 70% of caregivers suffer from depression and anxiety due to the stress associated with providing 24/7 care. The long-term consequences of caregiving can include increased risk for mortality and morbidities such as coronary heart disease or stroke.

Moreover, social and attitudinal barriers to participating equally in society pose a significant risk of poverty for families of people with disabilities. According to Ph.D. Rafał Bakalarczyk's analysis, people with disabilities are at risk of poverty in multiple dimensions, including economic, institutional, social, and mental aspects. The experience of poverty in one dimension can lead to a higher risk of poverty in other dimensions, such as too low income, deprivation of material and social resources, and a challenging employment situation. Research by the Polish Fund for Rehabilitation of People with Disabilities (PEFRON) suggests that up to 29% of families with disabled family members cannot afford basic necessities, such as fresh fruits and vegetables and fresh food products like bread. Such findings underscore the need for greater support and resources for caregivers in Poland.

The welfare and healthcare systems in Poland are ineffective in addressing the needs of caregivers, as demonstrated by the 2018 protest where persons with disabilities and their caregivers occupied the Polish Parliament for 40 days without any tangible effect. In Poland, there is still a prevailing societal construct that caretakers, typically women, should embody the idea of quiet sacrifice, particularly when caring for children with disabilities. This construct diminishes their agency and subjectivity, and they are often viewed as incapable of making independent decisions. Marta Sałowska's analysis of press articles on the Parliamentary protests of carers of people with disabilities reveals a dominant approach where specialists, social workers, psychologists, and politicians are believed to know better than the caregivers themselves. As a result, the caregivers are not given specific financial support or the autonomy to decide on their professional activities. Instead, they are offered vouchers to spend on items such as holidays, assuming that they lack the ability to make informed decisions. On the other hand, caregivers are expected to take on roles for which they have no training, such as physiotherapists or speech therapists, while adhering to the advice and guidance of specialists and experts. Despite these expectations, when caregivers seek the support they need, they are often labeled "demanding," which exacerbates their frustration and helplessness. This way of treating people with disabilities and their caregivers is unreasonable and ultimately harmful. It undermines the caregivers' dignity and perpetuates the cycle of poverty and social exclusion faced by persons with disabilities.

The Mudita (which in Sanskrit means the joy/pleasure that comes from delighting in other people's well-being) strategy focuses on providing respite support and everyday logistics, accompanied by advocacy efforts. The strategy has expanded its humanitarian assistance efforts to families with disabilities, concentrating on Poles and Ukrainians, in response to the full-scale Russian invasion of Ukraine in February 2022.

Respite support is seen as part of human rights, and Mudita ensures that people's fundamental rights are respected through social support. Mudita's respite support includes respite volunteering, support groups, a support phone for caretakers of people with disabilities, and “The Flying SPA.” Respite volunteers operate in 9 provinces of Poland, providing respite support to several dozen families. These volunteers provide assistance to children, teenagers, and adults with disabilities freeing around three hours per week for primary caregivers. Many of these local coordinators are mothers caring for loved ones with disabilities who take the lead in coordinating the available respite support. Recognizing the value of this support, they have become passionate advocates for sharing this solution with others. Mudita is actively developing a network of local coordinators to have at least two of them in every voivodeship in Poland. This way, every family that seeks assistance can benefit. As Sylwia, mother of Krzyś with Spinal Muscular Atrophy (SMA), explains: “respite care offers a much-needed break from the daily demands of therapy, rehabilitation, doctor visits, and physiotherapy.”

Each family's circumstances and challenges are unique, but relatives of individuals with disabilities often face similar issues. In response to these challenges, Mudita has established online support groups for mothers, fathers, and other relatives of persons with disabilities. Participating in support networks can boost self-esteem and provide the strength needed to cope better with daily challenges. These groups meet once a week for ten months. One participant shared, “among other mothers facing the unique nature of their children, I no longer feel alone.” In February 2021, Mudita launched its first online support group for mothers of children with disabilities. By the end of the year, eight groups had been organized, including six for mothers, one for fathers, and one for all relatives, including siblings. As of October 2022, in total, around 100 individuals use this form of psychological support. "I have learned here that I have the right to live like every other mother," says Ania, mother of Tymon, who has cerebral palsy and autism.

Mudita also offers a helpline for caretakers of people with disabilities, providing confidential listening and emotional support. The helpline is operated by nine psychologists, available 23 hours a week to offer free and anonymous psychological help. This service has proved very beneficial, with several dozen people using it each month. Between January and September 2022, the helpline received over 500 phone calls, and Mudita considers this support successful, having assisted 200 of those callers. This simple solution has reached over 880 caretakers, providing them with much-needed support to help them navigate their challenges.

The last format of respite care is “The Flying SPA,” which is Mudita's cornerstone, where it all started. The mothers of children with disabilities are not superheroes; many cannot access "luxuries" such as hairdressers or massages. While a person with a disability has care provided by Mudita, caregivers can rest. One of the participants shared her experience, saying, "I am an elderly lady who had a massage for the first time in her life. I am proud of myself that I decided to do it. A wonderful masseuse, very cultured, and nice. I am delighted." The Flying SPA initiative also provides a space for professionals to contribute their skills for the common good. One of the volunteer beauticians shared her perspective, saying, "These women left their everyday life aside, and the volunteers took care of the children. These are ordinary women who take things very lightly. I gained such a distance from them; it's good to look at people who have it uphill, but they are doing great."

The second stream of Mudita's strategy is focused on everyday logistics, as Olga recognized that caretakers face many small and large challenges that can become overwhelming without proper support. To address this, Mudita has developed various formats to ease these challenges and support caretakers. These formats provide opportunities for caretakers to actively participate in finding solutions and supporting one another, becoming changemakers in their own right.

One of these formats is the Welcome Book. This first-in-Poland tool offers psychological first aid and information to parents who have just been diagnosed with their child's illness, disability, or special needs. The Welcome Book guides exercising their rights, coping with stress and anxiety, taking care of themselves and their relationships, and building a support network of other parents who have gone through similar experiences. The Welcome Book also includes a special gift ¾ a massage oil to remind parents that they are essential and that while caring for their child, they must also care for themselves.

Mudita also offers "The Power Meals" (operating in 3 cities), where volunteers weekly collect food items that are still good to eat but may not be sold due to close expiration dates or imperfections in appearance. These food parcels, mainly fruits, vegetables, and bread, are then delivered to caretakers who have difficulty leaving the house to shop. This program helps families, saves food, and involves bazaar sellers in contributing to the community. The work is also accompanied by "The Power Podcasts," which feature the stories of families who have faced challenges related to disability, law, environment, and social awareness.

In addition, Mudita has created a team of information support called "007 Team for Special Tasks." The team responds to dozens of messages from caretakers each day, addressing questions and problems related to disability, such as finding the best car seat for a child with limited mobility, locating a dentist for an adult with an intellectual disability, and finding paid care for children and adults with disabilities.

Fundamentally, Mudita's strategy creates a space for caregivers to participate in the solution and support others actively. The organization's efforts are to help families raise awareness about the daily challenges and bring them to governmental attention. Olga is a working group leader dedicated to caretakers at "Our ombudsmen." With the support of members with legal knowledge, they can discuss demands for legal changes and collaborate with a broad coalition of citizen sector organizations to lobby for changes. Their priority is addressing the restriction assigned to the care allowance of 2129 PLN (450 euros), which is below the minimum salary in Poland. Caretakers receiving this allowance cannot get paid for the job or risk losing assistance. Many caretakers would like to work part-time, for example, when their child with a disability is at school, but financial constraints prevent them from doing so. Removing this restriction would benefit the country's budget, and social support for this change exists. On January 19, 2023, the Government Plenipotentiary for Disabled People announced that a reform including the decision about the removal of the allowance restriction is nearing completion. Other postulates of the working group are about extending the period of paying pension contributions for a person receiving a care benefit for the entire period of caring and many others.

An unplanned but essential and indispensable part of the strategy has become a highly specialized humanitarian aid. The specificity of refugees from Ukraine also allowed caregivers with severely disabled people to leave their homes, who could not be accommodated in standard support places. Mudita operates reception centers for refugees with disabilities in Warsaw and Krakow, offering temporary housing, meals, psychological support, doctor and physiotherapist consultations, lawyer consultations, and assistance to volunteers in resolving critical issues. From June to September 2022, Mudita provided shelter to more than 350 individuals at these locations. Additionally, Mudita runs a helpline in Ukrainian, which offers practical assistance and has resolved 1400 cases since April. In October, the organization launched the first support groups for caretakers from Ukraine, and Mudita's solution is part of the official governmental refugee response plan.

The nature of respite care support is that the change in that sector needs to be deep before it can be broad. Olga aims to build solutions that address the deep problem and simultaneously can be scalable. Currently, Olga focuses on increasing the scale of activities in respite care and everyday logistics strategy streams. The unresolved issues of deinstitutionalization and the issue of housing for people with disabilities are significant sources of anxiety for caretakers. Although Olga has no ready solutions, she says that she can retire when these issues are resolved.

Olga has been working with people with disabilities since the age of 16. From the beginning, she thought that the appearance of a disability in the family was often like landing on another planet. After her teenage volunteering experience, during her first year of psychology studies, Olga started working as a therapist for a boy with autism. At that time, she also observed how many problems the whole family faces: physical and mental exhaustion, fear for the future, and looking for the best therapies. Those challenges often isolate them from people who do not know such problems.
Olga also volunteered at the Itaka foundation (missing persons search center). She was amazed at how comprehensive care is provided to the families of missing persons. A support group, consultations with lawyers, social workers, or psychologists ¾ she thought something like this would be helpful for the families of people with disabilities.

Years later, Olga became an independent mother. At that same time, she accepted a job offer in a distant part of Poland. The job was great, but she cut herself off from her support group. It turned out that such independent motherhood is tough. When Olga came home for Christmas, her mother decided to take her to the spa. Being at the massage table, it occurred to Olga that the mere fact that her mother saw her needs was fundamental. Olga realized every mom could use a little "noticing" from time to time, especially mothers of people with disabilities. This led Olga to believe that everyone has the potential to create a society with room for tenderness and support.