The benefit for a carer of a disabled person in Poland currently amounts to approx. 2,1 thousand. zloty. This amount cannot be multiplied. This means that if there is more than one child with a disability in a family, the amount of the allowance does not change. – The service provider did not foresee that someone could have more than one disabled child – Agnieszka says bitterly. She herself has three of them and has been fighting for years to provide them with a dignified existence. – It is getting more and more difficult every year. Everything is getting more expensive and the needs are only growing. State aid is negligible. Disability in Poland is a luxury – he says.

  1. Agnieszka Oczkowska is a lawyer, but has not worked in the profession for years. He cannot do it, because according to the regulations, in order to receive the allowance for the carer of a disabled person, he must be economically inactive
  2. The amount of such an allowance is 2,1 thousand. PLN, and besides, “you are entitled to” for one child. – The service provider did not anticipate that someone could have more than one disabled child. And now: what may be enough 2 thousand. zloty? – Agnieszka wonders aloud
  3. The costs of treating Ewa, Frank and Jaś are enormous. Annually, up to 100 children are needed to treat children. zloty
  4. – Our legal system requires parents of disabled children to be managers for them. If they do not seek help from non-governmental organizations, do not organize collections, they are doomed to poverty, and extreme poverty – sums up the mother of three disabled children
  5. You can find more about the coronavirus on the TvoiLokony home page

Triple blow

The story of Agnieszka and Tomek Oczkowski could serve as the basis for a drama film. However, their lives are far from the plot of any drama. For two reasons. First, it is not a fiction, but a reality full of everyday challenges. Secondly, his script is written by life, and that changes faster than the most prolific writer could invent.

It started with Ewa – the long-awaited daughter of two ambitious lawyers. The girl was born healthy, or so it seemed to everyone. It quickly turned out that the little one was not gaining weight. There were feeding problems, stomach pains. The diagnosis was made only two months after birth: galactosemia. It is a rare genetic disease involving a metabolic disturbance in the conversion of sugar (galactose) into glucose, which is essential for the proper functioning of the entire body. Late diagnosis led to irreversible neurological disordersthat Ewa struggles with to this day – reduced muscle tension, hand tremors, speech disorders and many others.

Franek was second. During pregnancy, “checked” on all sides – no birth defects, genetic diseases, pathologies were found. Agnieszka and Tomek were relieved because the chance that she would inherit galactosemia was at the level of 75 percent. The boy, however, was born without a right forearm. When he was seven, he was additionally diagnosed with type 1 diabetes, followed by a hypothalamic tumor.

At the time of Frank’s diagnosis, Hansel had also been in the world for four years. Agnieszka calls the fact that he was – and still is – a real miracle. The boy was also born with galactosemia and although this time the diagnosis was made very quickly, there were complications. While still in the hospital, Hansel contracted the stick of blue pus, he developed sepsis, which seriously damaged the health of the newborn. Five years later, again passed sepsis. It caused neurological disorders, epilepsy and chronic respiratory failure, which immobilized Jan completely. The boy does not breathe on his own, does not speak and does not move, he communicates with the environment solely by blinking.

The list of costs is endless

Each of the three children is subject to treatment based on pharmacotherapy and rehabilitation. They are under the care of over a dozen specialists.

With Ewa, my parents travel all the way to Warsaw (from Toruń – ed.), Because only there has for many years been possible to treat such a rare genetic disease as galactosemia. The girl is under the care of a metabolist (specializing in galactosemia), neurologist, gynecologist, endocrinologist (the disease causes damage to a woman’s reproductive organs), physiotherapist, speech therapist and many other sensory integration specialists.

A neurologist, anesthesiologist and gastrologist as well as numerous physiotherapists regularly visit Jan. – On average, four specialists visit us at home every day. Visits start at 9am and continue until evening, Monday through Saturday. Some are refunded, others have to be paid for. As for all ventilator equipment, respiratory drains, catheters, diaperswe consume a dozen of them every day. Their monthly cost is PLN 650. – It’s as much as we have to pay extra, after a partial refund – adds Agnieszka.

Franek is also receiving treatment in the capital. He goes there to use a modern insulin pump – the most promising method of treating type 1 diabetes. The device is not reimbursed. Its cost is 20 thousand. zloty. It is disposable, but you have to invest in the equipment regularly – sensors are needed every month, which cost about 1 thousand. zloty. Added to this is the cost of cancer therapy.

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However, the cost of drugs and physiotherapy is just the tip of the iceberg. You need medical equipment, parts for devices, accessories, hygiene products and a lot of other, non-obvious things.

– These are, for example, special food for Jan, who is enterally fed, but also dietary products for Ewa and Frank, who are on elimination diets – no lactose and no sugar. These are prostheses (the cost of one varies between PLN 15 and 20), but also constant tailoring of clothes for the son, because nobody designs clothes for people without hands, and Franek wants to look like any other boy – says Agnieszka.

Some people ask why dentures. They are not obligatory, many disabled people live without limbs. For Agnieszka it is incomprehensible. – How could I deny my son something that would improve his life, help him make his dreams come true? He wants to ride a bike, play basketball, play guitar. Ok, you can say: he doesn’t have to play sports, he doesn’t have to play an instrument, but please tell me how to tell my own child who wants to live a normal life, pursue his passions? – he asks rhetorically.

“Parents of disabled children must be managers for them”

Agnieszka has no doubts: – Disability in Poland is a luxury, although it is in no way associated with something nice. It gets harder every year. Everything is getting more expensive and the needs are only growing. State aid is negligible. Our legal system requires parents of disabled children to be managers for them. If they do not seek help from non-governmental organizations, do not organize collections, they are doomed to poverty, and extreme poverty at that.

The monthly cost of treating the children of the Oczkowski family is on average PLN 6-8 thousand. zloty. Annually, this amount reaches even 100. zloty, but this year they estimate that it may be as much as 50 percent. more. – The recent increases have also affected us. Literally everything was expensive: from diapers, through drains, to spare parts for a respirator and prosthesis, not to mention specialist consultations. I really don’t know what will happen this year and how we will manage to survive it – adds Agnieszka.

Fixed income is Tomek’s salary, who works several jobs to provide the family with the most dignified existence, and benefits. The latter, although important and necessary, are completely inadequate to the growing needs.

– For example nursing benefit, which so far amounted to approx. 1,9 thousand PLN, at the moment it is less than 2,1 thousand., so they were increased by about PLN 100. We are happy with the increase, but everyone knows that it is absolutely disproportionate to the price increases. The second thing is that “you are entitled” to only one child, and we have three. The healthcare provider did not anticipate that someone could have more than one disabled child. And now: which may be enough for 2 thousand. zloty? After all, we won’t even buy food for a month for a family of five with special needs, and where are the rest of the things that need to be secured for children? – he asks rhetorically.

However, what hurts Agnieszka the most is the law prohibiting the work of a carer who receives such an allowance. – It is known that when I spend all day looking after children, I don’t have much time to do any other activities. But nowadays, when it is so easy to organize remote work and you can do something part-time, I could take on even the simplest tasks and add these few, so important for us, pennies to the home budget. Under Polish law, I cannot, because I will lose the benefit – he complains.

Rescue? Rebounds. – They allow us to survive. We have been using the help of the Siepomaga Foundation for years and thanks to the huge hearts of many strangers, our children live and have a chance to heal. 1 percent is also a huge support for us. a tax that I ask everyone and everywhere. I run the website trojedzieci.org, I also write about our everyday life on Facebook, on the website of the same name. I do not hide, I am already very tired, the reality scares me, but I am the manager of my children and I will do everything to make them live and enjoy this life – he confesses.

When asked for advice for parents who have just faced the challenge of their child’s disability, she suggests:

– Contact your local foundation that brings together children with the type of condition. There you will get the most information and with experts you will prepare a plan for further action. When my Ewa was born twenty-something years ago, I was in the dark. I lost a lot of time, so we wasted a lot of things, we were unable to do or rehabilitate. That’s why time is of the essence. Unfortunately, I am not referring you because there is no plan to help the parents of a disabled child. Today, just like two decades ago, in a hospital, rarely will a parent hear what to do and where to go for help. Fortunately, there are non-governmental organizations, there are support groups, there is the Internet – it is worth taking advantage of these opportunities. Don’t wait. If you are concerned about something about your baby’s development, see an early childhood development specialist. The sooner the better – he advises.

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If you want to support Agnieszka and her family in the fight for the costly everyday life with disabilities, you can donate 1 percent. tax:

KRS 0000037904

Specific objective: 12729 Oczkowski Jan, Franciszek and Ewa

You can also help Ewa, Frank and Jasio by donating any amount to the fundraiser:

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