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For thirty years, she has been taking care of her severely disabled son. We should take a salary, says mother

He has no income, all benefits from the state are taken by his disabled son, and he has to live on them for two. Sixty-year-old Renata Prunnerová from Ostrava has been taking care of her son Pavel, who has cerebral palsy, a severe mental disability, and disabilities in his hands and feet, for thirty years. “I have to empty him mechanically, he is incontinent, someone always has to look after him, otherwise he will hurt himself. He also faces an operation, they will take his kidney. It’s really too much,” he enumerates.

Pavel, son of Renata Prunnerová.

| Photo: Courtesy of Renata Prunnerová

She cared for him with his parents and extended family for most of his life. She could at least work intermittently and earn by helping assistants. However, the family members who helped her gradually died, and she and her husband divorced. Four years ago, she was left alone in care. She cannot work, she does not receive money for assistance or respite services.

The son receives a care allowance of the highest, fourth level, disability pension and mobility allowance. “Together it makes 36 thousand crowns, there are two of us for it. You can’t survive on it. We caregivers should be paid. We work harder than many workers, we are physically and mentally exhausted. If I get seriously ill, I will put him in a residential service and I won’t have any more money. Everything is written on Pája,” he points out.

Barbora Chuecos and her husband Ernest raise their son Ángel, who was diagnosed with autism:

Volunteers have been helping to take care of Ángel since his early childhood.

They have an autistic son. We take it as an opportunity for our own development, says the mother

According to her, she can take care of a disabled child at home for decades only the middle class who have something to sell or rich people. It is said that the poor cannot afford home care. For twelve years, she has therefore been fighting for the financial security of those caregivers who care 24 hours a day, seven days a week, or for long-term sick leave.

Planned July an increase in the care allowance to 27,000 crowns per month according to her, it is not enough. Moreover, it is money for the disabled person, not for the caregiver. You get nothing. He points out that those who take care of a disabled person for many years will drop out of the labor process and lose social contacts. Once he runs out of power, he has nowhere to go back. “If I put Pája in an institution, I will lose the only income I have. After so many years outside the construction company where I worked, I could only work as a cleaner in it,” she muses.

The woman has been taking care of her disabled daughter for almost 25 years. At the expense of your strength, money and family life:

Mother Tereza (left) with daughter Anežka

The daughter has been disabled since birth. After 17 years, the authorities completely cut off her allowance

She is also bothered by the large state subsidies that flow into institutional care, which is around 70,000 crowns per bed per month, or into homes for the elderly, where a bed is subsidized by the amount of around 50,000 crowns per month. “They give us 36,000 crowns for two people per month for all benefits, but an institutional bed costs twice as much,” he says.

According to her, people who could easily be cared for at home often end up in subsidized homes for the elderly. “But young people don’t want to take care of them, they want their apartments, houses and money. There should be means tests like there are in many places in Western Europe. Whoever has more property cannot put their parents in an institution,” he says.

The Ministry of Labor and Social Affairs (MLSV) is increasing the level of the fourth level care allowance from 19,000 to 27,000 crowns per month in an effort to provide relief to caregivers. The money can be used to pay for about seven hours of assistance per day, and additional hours can be purchased from the personal assistance subsidy title. “Gradually, we want to get to a state where the care will not rest on, say, two family members, but the client will be able to pay a person who will have this as a part of their job,” said the head of the department Marian Jurečka.

According to Prunner, this plan has cracks. “I can’t imagine that I would go to work during the day at the age of sixty and have a second shift with my son at home in the evenings, nights and weekends,” she objects. “In addition, a round-the-clock assistance service means that you turn your small apartment into a hospital and live in it with a stranger,” he points out.

When asked what a family carer is supposed to live off of when he is unable to work due to the actions around the disabled person, ministry spokesman Jakub Augusta replied: “An alternative income is the care allowance that the carer is entitled to for the care of a person dependent on their help.”

The daughter’s muscles are gradually weakening, the disease is getting worse. The mother tries to combine care with work:

Jindra Landová's family refused to give up on their passion for travel, even after doctors diagnosed their daughter Mia with muscular dystrophy

We live a difficult story, but every day is worth it, says the mother of a severely disabled daughter

However, Renata Prunner does not like the fact that, while family caregivers will receive a maximum of 27,000 crowns per month after the increase in this allowance in July, a professional personal assistant can receive perhaps twice as much thanks to subsidies from the state. A disabled person who draws more than 80 hours of assistance per month has up to 290 additional hours for just one crown per hour, the rest is subsidized. He sees this as favoring disabled people using personal assistance over those who are cared for by a loved one.

But according to Augusta, the ministry does not prioritize professional assistants over family caregivers. “The recipient of the care allowance is a dependent person and it is up to him whether he will use these funds to provide social services or to provide for a caregiver. In this case, the Ministry of Internal Affairs and Communications does not prioritize any of the options, what is important for it is the support of people in their natural social environment,” he said.

After thirty years of care, Mother Prunner is already very physically and mentally tired and does not know where to go. “The consequences of such serious diagnoses are downplayed in the Czech Republic. At the same time, it is a huge human tragedy that destroys an entire family. People are afraid of you, they don’t want to go to your house so they don’t have to see the horror and despair,” he concludes sadly.

We will not put them in an institution
Up to a million people care for their relatives at home. However, around 200,000 Czechs are unable to work full-time due to the care of their loved ones, they struggle with a lack of money, extraordinary stress, social isolation and sometimes even the breakdown of partner relationships. Nevertheless, they try to manage everything so that they do not have to put a seriously ill loved one in institutional care. This saves the state a lot of money.

Their fates are covered in a new series by Dení and the organization Invisible We will not put them in an institution.

Are you also struggling with caring for your disabled loved ones? Email us your story [email protected].

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