Not knowing whom to contact for help, information about available treatment methods and benefits to which they are entitled is the biggest everyday problem for 75% of parents of chronically ill children and children with disabilities—according to the results of a survey by the Espero Foundation – Nadzieja Dla Dzieci, which also included caregivers from Lower Silesian Voivodeship.
Long queues to specialists or a lack of doctors in their place of residence are also a major concern. As if that were not enough, these challenges generate further problems. Because of the system’s “illnesses,” caregivers of children suffer from insomnia, depression, anxiety and burnout. Nearly 9 in 10 parents surveyed admit that they experienced a mental health crisis over the past year.
An ombudsman is needed now!
Appointing an ombudsman who would safeguard their rights and needs, together with a new, comprehensive support system, is a chance to change this difficult situation.
The average waiting time for a first appointment at a clinic for children with autism in Wrocław under the National Health Fund is as long as 300 days. The qualification process for occupational therapy can take up to four months.
To avoid the queue, families can choose a private facility. An hour of individual therapy costs as much as PLN 240. By comparison, the nursing allowance is just under PLN 216.
In the capital of Lower Silesian Voivodeship, fewer than 10 paediatric cardiologists specialising in congenital heart defects work in public facilities. Too few for the needs. There are also problems with other specialisations.
70% of the parents surveyed by the foundation wait at least three months for a specialist appointment. Two-thirds admit that the lack of an appointment or lack of coordination worsened their child’s health situation.
Caring for a child with disabilities? “Multitasking” does not begin to describe it
Caring for a child with disabilities is a full-time job, around the clock. With zero pay, but requiring total dedication. The day is dictated by medication schedules, rehabilitation, specialist appointments and responses to sudden deterioration in the child’s health.
It is therefore unsurprising that it very often means one of the parents must give up paid employment or significantly reduce their working hours.
– For more than a year, I have been a single mother of three boys, two of whom have disabilities. Caring for them is a huge challenge. However, our life revolves mainly around the youngest, Tomek. My son has undergone two heart surgeries, and another two are planned for the near future. We also rehabilitate Tomek every day because he has problems with muscle tone following the surgeries. All this requires me to have logistics skills at the highest level. I take all three children to every appointment or therapy stay because there is not always anyone who can stay with the boys. I try to combine caring for the children with work. I currently work, but it is not always easy, because not every employer is understanding. Sometimes I have to leave work during the day because my child needs me – confides Kornelia Wilk, mother of six-year-old Tomek, a beneficiary of the Espero Foundation – Nadzieja dla Dzieci, who was born with a serious heart defect in the form of congenital narrowing of the left arterial opening.
Galyna Koval, the mother of nine-year-old Dima, who is on the autism spectrum, describes her everyday life as follows.
– Dima’s reactions and behaviour are very difficult to predict. There are completely calm days, but there are also moments when everything annoys my son. He gets angry, for example, when the tram does not arrive on time or because of some unexpected noise. He can be explosive, and because of this he is often misjudged by those around him. Not everyone understands that it is autism spectrum disorder. It is easier for others to conclude that my son is simply badly brought up or that I am a bad mother. It was probably worst when we fled to Poland from the war in Ukraine. It was a major additional stress for Dima, with many new stimuli. He threw toys and shouted that he wanted to return to his kindergarten in Kyiv. I put a lot of work into helping my son feel comfortable in Poland. My parents are here with me, and it is his grandparents who take him to therapy and doctors. I work shifts in a warehouse, and I am glad that I can combine work with caring for my son, because otherwise it would be difficult. There are many expenses – Galyna says, describing her everyday life.
Fighting the system is like tilting at windmills
The nursing allowance, a benefit intended to cover part of the expenses associated with providing care to a child with disabilities or a chronically ill child, currently amounts to PLN 215.84 per month. The caregiving benefit is PLN 3,287 per month. Despite the recent increase in this amount, in practice it rarely compensates for lost income and does not cover the costs of intensive rehabilitation, private medical appointments or travel to specialist centres.
The benefit is received by parents who give up work or do not take it up in order to care for their child.
– I cannot count on any benefits – says Galyna. – I receive an allowance in Ukraine amounting to around PLN 400, so I cannot receive the nursing allowance in Poland. Besides, people react badly to Ukrainians receiving anything in Poland. Dima has a disability certificate, but it does not include point seven, so there is no question of receiving the caregiving benefit – his mother points out.
The aforementioned seventh point, concerning the need for care or assistance from another person, determines whether a child requires constant or long-term care and needs help with everyday functioning to a greater extent than a healthy child of the same age. Why is it so important for parents raising children with disabilities? It entitles the caregiver to receive the caregiving benefit and is the basis for payment of the nursing allowance.
– Dima is in an integrated class, so at school he receives help from a speech therapist, psychologist and support teacher. However, for my son to have a chance to “catch up” with his peers, he has to work with specialists every day. Giving that up would mean halting all his progress – adds Galyna Koval.
Kornelia Wilk admits that without the help of the Espero Foundation, she would not be able to provide her son with adequate care.
– Without fundraising campaigns and donations from 1.5% of tax, it would really be difficult to balance the household budget. Especially since most examinations and doctors’ appointments have to be arranged privately because the waiting times are simply shorter, and we cannot afford to wait weeks for appointments, for example with a cardiologist.
A diagnosis is only the beginning
Helplessness is a feeling well known to parents of sick children, who wait years for the correct diagnosis and fight every day to obtain specialist appointments.
– The worst was at the very beginning, after the diagnosis. I had no knowledge of heart defects, yet I had to make quick decisions about treatment. I read up on the subject online, and the doctors in the ward told me a great deal, but I knew that as soon as we left the hospital with my son, I would be left alone with everything. Apart from having a follow-up appointment arranged, I really did not know what to do next – admits Kornelia Wilk.
Left to fend for themselves
Because of flaws in the system—limits on benefits, long queues for doctors and a lack of specialists—parents of chronically ill children and children with disabilities are forced to seek help on their own. They devote an enormous amount of time to educating themselves about medical matters.
They spend long hours online, searching for successive therapies and trying anything that might help their children. Those from voivodeship capitals or larger urban centres are in a better position—even though they face long waiting times for specialist appointments, they have easier access to specialists. In many regions of Poland, there is a shortage of paediatric cardiologists, neurologists and rehabilitation specialists. Parents are forced to travel frequently across the country, generating additional costs and taking away time they could spend with their child.
In Poland, we have the Ombudsman for Children, and patients also have their own ombudsman. But who protects the rights of parents and caregivers of children with disabilities? – Nobody!
What would the ombudsman’s role involve?
The idea is to appoint an ombudsman—an authority that intervenes, demands responses from hospitals and offices, monitors compliance with and protects parents’ rights, initiates legislative changes, and ensures that assistance is coherent, predictable and accessible in practice.
The ombudsman would oversee the Central Support Coordination Point (CPKW)—a single point of contact that directs a case onward—and the Voivodeship Support Coordination Points (WPKW)—points where a family receives real support from a team, rather than merely information. Patrycja Rudnicka emphasises that the idea is well thought out and clear for parents, and was also developed based on consultations with parents.
– Our plan consists of six steps. First, the parent contacts the CPKW online or via the helpline. The case then goes to the support coordination point in the relevant voivodeship. The family receives a coordinator—a person who helps them “navigate the system”: planning steps, monitoring deadlines and supporting contact with hospitals and clinics—as well as an Individual Support Plan (IPW). In the next step, the coordinator arranges legal and/or psychological support – explains Patrycja Rudnicka.
Support the initiative
The initiative to establish an Ombudsman for Parents and Caregivers of Children with Disabilities, together with central and voivodeship support coordination points, can be supported by donating 1.5% of your tax to the Espero Foundation.
It costs nothing and takes just a few seconds. When completing your PIT tax return, simply enter KRS number: 0000877316. More information: https://www.nadziejadladzieci.pl/przekaz-1-5-podatku/.
It is also an opportunity to support Tomek, Dima and the foundation’s other beneficiaries from Lower Silesian Voivodeship in their fight for health and life.