“Once it happened that the battery in the fan failed and in a few seconds he became completely pale,” personal assistant Toni, who has been practicing her profession for ten years and today joins the personal assistants’ strike, describes the care for the user.
“I have worked with people who have a tracheostomy with a cannula (artificial breathing opening in the neck with a breathing tube) and need aspiration or cleaning of the airways, which is quite demanding and is done several times a day, precise hygiene is important,” says Tomi about working with a user with muscular dystrophy.
The user also needed the cannula for ventilation, which allowed him to breathe. “It once happened that the battery in the fan failed and in a few seconds he became completely pale. Sometimes there is also a clot in the cannula that cuts off the air flow,” Tomi describes the most stressful moments of working as a personal assistant. It is also demanding to work with a gastrostomy, which is an artificial opening in the stomach that allows feeding.”The food should be properly mixed and injected into the stomach.” When managing a tracheostomy and a gastrostomy, the assistant bears a huge responsibility, as the user’s life depends on it.
Tomi is employed full-time as a personal assistant and works 40 hours a week. He works in shifts, i.e. morning, afternoon and night, on Saturdays, Sundays and holidays. So far, he has regularly worked with four users, sometimes due to the absence of other assistants, he comes to the aid of a user for whom he is not otherwise regularly in charge.
Users who are at risk of death are entitled to full personal assistance, or 168 hours per week, which means that they should have four to five personal assistants in rotation. But since there is a shortage of personal assistants, it sometimes happens that only three to four assistants take care of such a user on a regular basis.
Beneficiaries of personal assistance are people with various forms of disability who need help in living independently, but want to live outside of full-day institutional care. Personal assistance, e.g. they are needed by people with multiple sclerosis, muscular dystrophy, tetraplegics, the blind and people with other forms of disability. There are currently 4,035 beneficiaries of personal assistance in Slovenia, and there are around 8,000 personal assistants, and it should be emphasized that most users do not need 24-hour care.
Help at work, involvement in family dynamics
“I worked with people with multiple sclerosis who needed help lifting, dressing, sitting in a wheelchair or feeding. But they could do some things by themselves.” Tomi was a personal assistant to a man who worked as a translator but could not type himself. So he sat next to him and typed what he dictated. “In a way, I was an extension of the arm,” he adds.In addition to other things, I also helped another dystrophic with a cannula at work, e.g. when photocopying, putting documents in work folders…”
Many problems in the work of a personal assistant are sometimes caused by the very understanding of the user. “When you get used to the speech and interpret it for others, the person’s condition worsens. Sometimes you can no longer understand a person even with the help of a communicator.“The personal assistant also has to lift the user from time to time, as a result of which back problems often occur in their profession. At work, relationships within the family the assistant joins can also be burdensome.”But we stick to the principle of not talking about it. We are not talking about other private things of the user either.“
Tomi with his users usually stays “until the end“. There is no single answer to the question of what the emotional relationship between the user and the assistant is.”You are emotionally connected to the user in some way. Some are more domestic, others more official. According to some theories, it is even better for the relationship to be more official than completely friendly,” explains Tomi, adding that this is his job after all.
For the work of a personal assistant, the 24th starting salary class is foreseen, after ten years of work, Tomi receives a good 1,000 euros, together with all allowances for Sunday and night work. Ten years ago, when he became a personal assistant, the state paid him the difference up to the minimum wage.
Most assistants are currently employed full-time
But personal assistants are not part of the public sector. Although personal assistance is 100% financed from the budget, it has been grounded in the private sector from the beginning. According to data for March, 107 personal assistance providers are registered at the Ministry of Labour, Family, Social Affairs and Equal Opportunities. These are mostly institutions and associations in the public interest that employ personal assistants or the assistants perform activities for them as self-employed.
“In the beginning, it was complete chaos, as contractors could be sole proprietors who employed or contracted personal assistants who acted as precarious workers. Currently, most personal assistants are full-time employees,” explains the president of the Personal Assistance Union Nenad H. Vitorović. There are approximately 1,200 personal assistants who provide services as independent entrepreneurs, which represents 15 percent of all those who practice this profession.
These are mainly personal assistants, who are not only personal assistants, but also perform other activities through sp. But as Vitorović adds, more than half of the self-employed are still forced to do so. “The personal assistance provider employs a personal assistant for an indefinite period with a trial period, and when it expires, he is faced with the fact that, if he wants to continue the work, he must open a sp. sp,” he warns.
As Vitorović adds, before the amendment to the Act on Personal Assistance, which slightly tightened the conditions for providers of personal assistance, there were many financial interests in establishing institutes, which saw the implementation of personal assistance primarily as “good business“.
Family members as personal assistants
Personal assistants can also be family members, but currently only two family members can be personal assistants at a time. Last May, according to data from the Ministry of Labour, 51.5 percent of the hours of personal assistance provided by family members were completed. At the consultation on personal assistance just over a week ago, the competent minister, Luka Mesec, said that the possibility of providing personal assistance would be limited to one family member, while the rest of the assistants should not be family members, because according to the minister, “this service must not socially deactivate the whole family”.
“We constantly warn that it is necessary to prepare criteria according to which problematic family members would be excluded from personal assistance, but this is not listened to, the discussion only revolves around the number of family members who can provide personal assistance,Nenad H. Vitorović is critical of the announcement. While the Ministry of Labor is preparing the revision of the Act on Personal Assistance, Vitorović warns that so far the amendments to the Act on Personal Assistance “they never really tried to improve personal assistance, but to save on it15.5 million euros in budget funds were allocated for the provision of personal assistance services in January. The costs therefore increase to 200 million euros on an annual basis.
The defender of the principle of equality for the law on personal assistance requests a review of the constitutionality
Today, when the personal assistants are on strike, the Defender of the Principle of Equality has announced that he has submitted a request to the Constitutional Court to review the constitutionality of the law on personal assistance. In his opinion, the law is discriminatory because it regulates the rights of people with disabilities based on their age, but at the same time, the competent ministry did not take into account the recommendation that this discrimination should be eliminated.
Beneficiaries of personal assistance, according to the definition of the law, are people with disabilities aged 18 to 65 who need help in carrying out activities for independent personal and family life, integration into the environment, education and employment for at least 30 hours a week.
The defender of the principle of equality already assessed at the beginning of 2021 that such a definition is discriminatory. He made the decision based on the application of a person who applied for personal assistance a few months after turning 65. “During the evaluation process, counsel found no valid reason for denying the right to personal assistance to a certain age group of people with disabilities on the basis of age alone. He also found that there are no services comparable to personal assistance for over-65s . Although these persons with disabilities may benefit from the institute of a family assistant or help for the family at home, these forms of assistance are less accessible, less extensive and more expensive for the user compared to personal assistance.” they wrote in a press release.
The revised Act on Personal Assistance in November 2021 did not take into account the defender’s assessment, but in February this year he received a new proposal for a request for a constitutionality assessment, in which the proposer cited the case of two equally seriously ill persons who need comparable assistance services, but only because of the age difference between they receive various forms of assistance. A patient under the age of 65 is entitled to 24-hour personal assistance, while a patient over the age of 65 is only entitled to an allowance for assistance and service.
Unequal treatment of persons with disabilities only because of age is unfounded and constitutes discrimination in accessing the right to personal assistance. The defender therefore proposes to the Constitutional Court that, in the event that the law is inconsistent with the Constitution, it should instruct the National Assembly to amend the law in which age restrictions will be excluded.