There is a struggle between Minister Rafalska and the carers of disabled adults. Jolanta Świderska, Łukasz’s mother, who founded the first Day Center for Adults with Autism in Poland in Białystok, tells about what they are demanding from the government and what it is like to live with a disabled adolescent and adult child.
- Representatives of parents and guardians of disabled people have been protesting in the Sejm since last week. They demand the introduction of a rehabilitation allowance for disabled adults in the amount of PLN 500 per month and the equalization of the amount of the social pension with the lowest disability pension from ZUS
- Parents and the disabled met with Minister Elżbieta Rafalska. The protesters presented their draft agreement. They announced that they would stay in the Sejm until the bill was passed
- The founder of the first Daily Center for Adults with Autism in Poland, Jolanta Świderska, is the mother of Łukasz, who has been suffering from autism since childhood. Every day he fights for his son’s health
Representatives of parents and guardians of disabled people who have been protesting in the Sejm for a week now met with the ministry. Minister Rafalska listened to the protesters who proposed that the demand for a PLN 500 supplement for disabled adults should be spread over time. The proposal is to be analyzed in the ministry.
Possibly, people with disabilities are only mentioned on the occasion of elections, or how the disabled do not behave in the same way as those parents who are currently in parliament and are fighting for their rights.
– In recent years, what has improved in terms of disabled people, has changed the amount of nursing benefits for carers of disabled people who require 600-hour care. Initially, it was very low – PLN 1480, but it was revalued after the previous protests. At the moment, the value of such a benefit amounts to approximately PLN 153. This amount has been increased to the appropriate national lowest and it is revalued every year. In other matters, nothing has changed – says in an interview with MedTvoiLokony – Dr. Jolanta Elżbieta Świderska, president of the board of the Oswoić Świat Foundation. – The allowance of PLN 12, which is paid by municipal family assistance centers, has not changed for at least XNUMX years. Worst of all, nobody wants to bring up the topic. Nothing has changed in terms of the availability of medical services as well. We have huge problems because we deal with adults with the autism spectrum, who also have other health ailments – he adds.
– The protesters in the Sejm expect at least one demand to be met – equating the social pension with the lowest pension currently being paid from ZUS, but this is the smallest problem. The whole thing is that these people are claiming a rehabilitation benefit of PLN 500. We have government programs such as “Apartment Plus” or “500 Plus Program” – it shows that this money is somewhere in the system. So why not give these 500 zlotys for the rehabilitation of the disabled. This amount is not so large and would not apply to such a wide group of people, but to those who are currently receiving a social pension or are incapacitated – emphasizes Świderska.
– I do not agree with Minister Rafalska that there is confusion in the judicial documentation. It is very easy to check. ZUS knows to whom the social pension is paid – it is granted to those people who are not able to work from birth and require care, and the majority of this group is incapacitated. The parents who are currently in the Sejm are asking for this PLN 500. It concerns the most severely injured people who require 24-hour care – he adds.
Jolanta Świderska founded the Day Center for Adults with Autism in Białystok. It is the first facility in Poland where teenage patients can stay five days a week. Thanks to this, their mothers can work professionally, or have moments when they can breathe and without remorse meet with friends, go to the hairdresser.
Łukasz was born 28 years ago. A beautiful, healthy boy, he got 10 points on the Apgar scale. There were some deviations from the norm, but not large enough to be particularly worried about them. The boy was restless as a newborn, he slept little, his speech developed reluctantly, then he became extremely active. When he was three years old, Jolanta Świderska decided that it was necessary to look for the reasons for her son’s unusual behavior. So the journey of doctors began: neurologists, speech therapists, psychologists, psychiatrists, and neurologopedists. In vain. – None of the doctors wanted to label my child “handicapped”. Because although medically everything was fine, we all saw that his behavior deviated from the norm – recalls Jolanta Świderska.
For the first time, the diagnosis of “autism” in relation to Łukasz was made by Dr. Michał Wroniszewski, one of the founders of the Synapsis Foundation. It was already something. There is now a direction to go. But little was said about autism at the time. Jolanta Świderska, with medical education and the title of doctor of medical sciences, remembers that she had maybe one lecture on this disease throughout her studies. When Luke was 5 years old, she decided that she was stopping to find the reasons for his “different behavior”. In large part because she faced other problems and decisions. – First of all, the choice of a kindergarten, and in the long run – a school – says Świderska.
At that time, there was already one integration kindergarten in Białystok, and another one was being created. Only no one wanted to accept Łukasz there. In the end, the Świderscy heard the condition: “If you give the daughter, who is two years older, healthy, we will accept the son as well.” They agreed. – Today I know that integration centers are not for autistic people – admits Jolanta Świderska. – It’s too big a group of people. Autism is largely related to communication disorders, but most of all to establishing and maintaining social contacts. These are people who function much better and learn more if they are in a small group. The ideal arrangement is one therapist per one mentee. My son somehow persisted for three years in that kindergarten, although I have wondered a thousand times whether I should stay at home with him, or devote even more time to him? But the psychologists I went to advised that if I could work, I’d better do it. Fortunately, thanks to the help of my family, mother and husband, I could be an active professional person.
A breath of normality for several hours
From the moment when Jolanta Świderska first heard the diagnosis of “autism” and began to learn about the specificity of this disease from materials downloaded from the West, she knew that she would never lead her son to “regular” elementary school at the beginning of the school year. There was only one alternative proposed by the system at that time: individual tuition at home. – I did not want to agree to it – admits Świderska. – In an autistic person, knowledge or skills once acquired do not remain forever. They fall back if they are not developed and maintained. I knew that if I locked Łukasz at home, after some time he would not want to leave the house at all. So I teamed up with other Białystok parents of children with autism and, in cooperation with the local government, we created a facility where our children could learn.
Only that after a few years the children grew up. Their compulsory schooling ceased to apply to them and the same problem appeared again as a few years earlier: the fear that with these grown-up children now it will really be necessary to shut up at home. Then Jolanta Świderska, together with other parents, came up with something again. She founded the Oswoić Świat foundation, and soon after that, the Day Center for Adults with Autism in Białystok. It is one of the few facilities of this type in Poland, the only one operating in a five-day system. It has 14 pupils, it is open from Monday to Friday, from 7 to 16.
– The few hours when an adult child with autism is in our care gives the parents caring for him a breath of normality. This mainly concerns mothers, because the vast majority of fathers simply leave after several years of “living under such stress” – says Jolanta Świderska. – Of course, if someone is professionally active, he brings a child to us and then goes to work. But most mothers just get a moment of peace. They can clean up, shop, and sometimes, if they can afford it, go to the hairdresser. However, more often they choose a doctor instead of a hairdresser, because they are not young people anymore. They begin to suffer from health problems typical of, for example, perimenopausal age. And how to go to the doctor, if 24 hours a day, 7 days a week, they have their adult children on their heads, which they have to look after all the time? What if they have to go to the hospital?
Then you can only do one thing with your child: send him to a psychiatric hospital, and there they do not use any therapy, only pharmacological treatment. If the patient is aggressive, and in this case he will be, because the environment has changed, he will be immobilized, most often by attachment. They will give him drugs, and he will lie and wait. Besides, there will come a time when we will no longer be able to take care of our children. From a biological point of view, they are healthy, strong, adults. How a 70-year-old woman will cope with caring for an over 40-year-old man.
According to Świderska, there is currently no system of adequate support for adults with autism in Poland. – They often lead a passive existence in family homes, and when their parents are unable to take care of them, in large social welfare homes not adapted to their needs – says Jolanta Świderska. – This existence is often interrupted by numerous stays in psychiatric hospitals. In Poland, the system of health care, rehabilitation, long-term multidisciplinary care, as well as social activation and social empowerment are clearly inefficient and maladjusted to the needs of adults with autism and their families.
There are no institutions or centers that would provide assistance to aging parents in caring for their adult autistic children. In addition, the burden of this care and its cost was also transferred to the parents or legal guardians. And it is very high, which is related to the nature of the disease.
Love lined with fear
The nature of the disease is also responsible for the fact that this daily care, despite great love, is also lined with fear. – Proper functioning of a person with autism requires maintaining their strictly established daily rhythm – explains Jolanta Świderska. – If something in this rhythm changes, does not fit, is different than usual, even if it is just a change in pressure or temperature, there is an outbreak of aggression or self-aggression. As I said, they are strong, adult people, mostly men. My friend had a contract with a security company. When her son was getting too insane, such great gentlemen would burst in and hold him down until an ambulance with a straitjacket arrived. It’s really not nice to see your own son lying naked, tied to the bed. Unfortunately, there are no other solutions at present.
That is why another goal of Jolanta Świderska is to create a XNUMX/XNUMX center for people with autism in Białystok. – But running it involves such enormous costs that I am afraid to think about them – nods Świderska. However, he adds that there is no way out because the statistics are alarming.
In 2000, estimated data for Poland indicated about 20. children and 10 adults on the autism spectrum. However, in 15 years, this number has risen sharply. Worldwide autism prevalence rates on average range from 3 to 6 autistic children per 1000 births. In Poland, the adopted rate is 6 autistic children per 1000 born (i.e. 1/166). Estimates for Poland can be compared to the statistics for Europe, which show that out of 150 people one is affected by this disorder. In 2008, the United Nations recognized autism as one of the world’s most serious health problems, along with cancer, diabetes and AIDS. It is noted that the incidence of autism has increased tenfold in the last 25 years.
– Although the knowledge and treatment options have improved tremendously, still 75-80 percent. people with autism will require constant, 24-hour care. Unfortunately, nothing is being done about it, there are no system solutions. It’s just that it is impossible to get away from the problem and the sooner we start dealing with it, the sooner we will see the results – convinces the head of the Oswoić Świat foundation. – We, the parents of adult autistic people, are left to ourselves. Without the goodwill and cooperation of the state, we cannot do anything. Legal solutions are needed and, of course, permanent financial resources, as is the case in the education system. Increasing the educational subsidy for children with autism spectrum considerably helped to solve this problem. Only these children will grow as ours have grown. After completing their education, they and the whole family will fall into a so-called “black hole”. Everything will fall back. Now I know that the help I was organizing all this time for my son and his peers came too late. Again, I am with a problem that none of the authorities is interested in, because if you don’t know what’s going on, it’s about money. We, parents of adult autistic people, want to create a facility that will be safe for our children. We have always dealt with them. We took on the burden of education and care, for which we always had to pay extra. We did not give them to social welfare homes and for this we pay a huge cost. We very often think with horror, what will happen when we are gone? The facilities that operate are not suitable, or even dangerous, for our adult autistic people.
If not a door, it’s a window
In December 2015, the first edition of the Oxford Encyclopedia was published in Poland. One of the people mentioned in it is Jolanta Świderska. In addition to the biography, you can also read the life motto of the founder of the Oswoić Świat foundation: “When fate closes the door, opens the window”.
– I really believe in that. The window is always open, although it is not always the largest and most eye-catching – says Świderska. – If not for the center, I would have been sitting at home with my son for several years. He would be retarded, and I would have to look at it and give him more and more drugs. Thanks to our facility, he is a young, admittedly low-functioning, but smiling, happy and cheerful person. If a few years ago, together with other parents, we said that if the door is closed, we can do nothing, today we and our children would be a group of sad, excluded from society, very unhappy people. However, we did find a window that was open. We act, we help ourselves and others, we move forward. This is the most important thing.
The Oswoić Świat Foundation is a public benefit organization that can be supported by donating 1% of tax to it, KRS 0000423745
What is autism? It’s a neurodevelopmental disorder whose causes are yet to be understood. The disease affects the development of the brain in the spheres of reasoning, social contact and communication. Children and adults with autism most often have problems communicating in a group and performing joint activities. Autism is most often revealed in the first three years of life (it occurs four times more often in boys than in girls), and the earlier the therapy is started, the greater the chances for its positive results and improvement in the child’s functioning, and thus the greater the possibility of gaining independence. adult person. The Oswoić Świat Foundation in cooperation with the Faculty of Computer Science of the Białystok University of Technology has developed the “AutismNet” model. By means of an electronic questionnaire (www.autismnet.pl), the parent may initially determine or exclude the presence of autism in a child before contacting a doctor.