“We have an 11-year-old son, severe autism was diagnosed when he was 3 years old. We noticed that something was wrong with the child. For all those 8 years, we paid for everything ourselves – education, therapies. We are following this path independently, because the state cannot help much, only providing the services of a psychologist and a speech therapist.
The situation changed when we got the personal assistant service, which was two years ago, as soon as it was available. We are very happy about it. The letter that just arrived from the Vilnius district municipality made me very sad. It says that the employee’s hourly rate has changed. Drastically reduced – 25 percent. without any warning. It was a shock for the working person, we don’t know either – he can leave us at any time.
The state is following the path of reducing the number of assistants, or what else to call them. I can’t the staff pay that difference, with us everything is calculated to the euro, unless we refuse something, and it will be at the expense of the child. For now, we are very happy that the assistant is staying, but I don’t know how long she will stay. It is not known what other news awaits. About 2.5 thousand euros per month is already spent on child’s education. This is not a “cosmic” amount, we live and work for the sake of our children, but if the assistant was no longer available tomorrow, it would mean a sentence for our family. One of us wouldn’t even be able to work to contribute financially,” says the boy’s mother, Sofija. Another child is growing in the family.
To the question of how she managed to get the service of a personal assistant, Sofija answers that it was easy, because she was one of the first with such a request: “Perhaps the municipality had money for it, it was even strange to me that they were helping so willingly.” I told another family raising a child with a severe disability about such an opportunity, she lives in the city of Vilnius, she also got it a year ago.”
The woman says that she was really unpleasantly surprised that the Vilnius district municipality decided to save at the expense of this service, because it only deepens the problem: children are not going anywhere, they will grow up and something will have to be done with them. “And what to do with a person who grew up without help?” Then they will need to be cared for, institutions will be needed to look after them.
Autism is a disorder, not a disease that can be cured. But it is based on scientific research that if you start working with a child up to 3 years old according to ABA therapy 8 hours a day and 5 days a week, then 50% grow up in such a way that you can’t tell from the side that he has autism syndrome, and the rest are socialized, adapted to live independently, are not a burden to the state or parents. So it is very worthwhile to work for at least a few years: they adapt, and no additional institutions or foster homes are needed, just how much maintenance costs. It is a pity that the state does not finance such help, such therapies.
The service of a personal assistant is very important and necessary, because if a family wants to apply therapies to a child, to educate them as necessary, then practically for 10 years one of the parents must not work, they must take care of a one-and-a-half-year-old baby both day and night, because the child does not sleep. Consequently, one parent is always around, while the other works for two or three, depending on how many children there are in the family.
I went looking for help because the child was spending a lot of money a month, I thought if someone would stay with him, walk him, I could work because we can’t pay the bills anymore. This service really made life a lot easier, we can both work, the child gets daily help.”
Sofia says that the child’s assistant is wonderful. According to the law, the municipality allowed them to employ their own person, the family found him, trained him so that it would be good for both the child and the working person. The parents go to work, and the assistant stays with their son all day until they return; teaches social skills during the day: dressing, bathing, eating so that the child can be independent, takes them to clubs.
“During those two years, we can see the result – the child has changed a lot. My son attends a comprehensive school, goes to therapy in the afternoon, visits the swimming pool, and learned to swim. There are situations when nothing can be done except to change the attitude, to reconcile, but our situation is not like that. It’s a very good saying to bend a tree while it’s young. So while children are small, they can teach a lot, but when they grow up, that’s all. Our child is 11 years old, he has learned to say what he wants, to wait and other important things; very happy about it.
You need to understand that autism is not a birth trauma, it is a bolt from the blue, no tests during pregnancy will determine that the child will be autistic, it can happen to any family, and they are increasing. If you knew what was waiting for you, you could prepare yourself, but it goes as it goes.
When the child was diagnosed with autism 8 years ago, not many people knew this term yet, we were told that we would work with the child for 15 minutes a day. I immediately realized that this is a no-brainer because I am with the child 24/7 and see what is happening.
I remember having to get a PPT conclusion before going to school. They talked to me for an hour not to do this, not to go, because nothing would come of it anyway. Allegedly, the child is bad, it will never get better, and why are we trying here. I kept saying that I’m not complaining, I’m not asking for anything, we’re just going to go and try for our money. Maybe we won’t succeed, because I don’t know what awaits, but we can try. There was a time when I already asked my husband to go talk because I was running out of patience. When we returned there after 4 years, the same specialists said how we have changed, how cool we are. To be honest, I became angry and disgusted,” recalls Sofia.
If you can change the fate of a child, you do everything
The woman says that their child has been studying in a private school with children of typical development for four years, he can read and count: “All educational institutions should accept all children, but in practice it is different. In all of them, they say that it will be too difficult, they don’t really want to accept him, they show that such a child is not needed, although our son is not aggressive, in addition, we said that we would bring our assistant who would be by his side.
During those 11 years, no one said a bad word to me about the child, but those institutions that are supposed to help did not help at all. A child goes to a comprehensive school for social skills, because if we want him to grow up to be among people, we have to raise him in such an environment, and not keep him locked up somewhere. Whether it is a public school or a private one, it makes no difference to us, except for money, because our assistant works with the child individually. Today, I think it’s too difficult for teachers to work with such children in public schools, although there are good examples, but most are unprepared or don’t want to be prepared,” Sofia says.
The family has another son, everything is fine with health. He got him when he already knew that the first one had autism syndrome. When asked if it wasn’t scary to have another child, they answered that it wasn’t, because then they didn’t know what was waiting for them, how much it would cost, because it was just the beginning. The woman does not hide that it was a very difficult time to raise two small children, but now it is easier, and the brother seems like a gift from God. They go to the same school together, meet, eat, and have a friendly chat.
“We waited a lot and wanted a family, so maybe it’s easier for us, but it’s also incredibly difficult. I understand people who have unplanned pregnancies or relationships that don’t work out, it’s really an unbearable burden both financially and emotionally to raise such children.
I think the worst thing is if a child is born into a family where it is believed that disability is a punishment from God. People think of everything, they punish themselves. None of the parents did anything wrong to have an autistic child, I see a lot of situations where parents screw themselves up.
It is easier for a person to bear a short-lasting pain, an illness, because he knows that it will pass anyway, the child can recover, he has hope, but when you know that nothing will pass and that it is for a lifetime, it becomes unbearable. You can’t beat your head against the wall because you can’t change the fate or when the child regresses, but if there is a result, if you can make his life easier, then you will hang on to anything.
Autism is not a tragedy, you can try to learn, adapt, there are autistic people who do not speak, but write books. Our son is very strong physically, he has no problem climbing a 5-meter pole, he can ride a scooter for 10 km without breathing. And if I told him to swim as much as he can, he would definitely be a champion,” Sofia smiles.
The municipality and the ministry also commented on the situation
Jolanta Gulbinovič, the representative of the Vilnius district municipality, when asked to comment on the situation, replied that the hourly rate of purchased or financed personal assistance is determined by the mayor of the municipality, taking into account the costs of providing and organizing personal assistance, the efficiency of their use and the peculiarities of the provision of this assistance in the territory of the municipality. The hourly rate of personal assistance may not exceed the amount of the maximum amount of financing for home assistance costs for the residents of the municipality determined by the municipal council (ie the hourly price per person).
Currently, in the Vilnius region, the price of one hour of help at home is 9.30 EUR, so in compliance with the provisions of legal acts, the price of one hour of a personal assistant is equal to the price of help at home (ie, it currently amounts to 9.30 EUR, previously it was 9.59 EUR) .
Currently, according to the above-mentioned legal act, the earnings of a personal assistant working in the Vilnius region are a little over 80%. hourly rate, the rest is intended to cover the organizational and administrative costs of the Vilnius District Social Services Center, which organizes the provision of personal assistance in the Vilnius District Municipality.
Having mentioned again that it is reduced after all; if the personal assistant’s earnings are a little over 80% hourly rate, which means that 80% of the amount from EUR 9.30 comes out to about 7.40 EUR. The remaining amount remains for the district to cover its organizational and administrative costs. The representative of the municipality replied that the rate was reduced in accordance with the description of the procedure for determining the amount of payment for personal assistance for persons with disabilities approved by SADM.
When asked by the Ministry of Social Security and Labor what has changed, the same answer was received that the personal assistant’s rate is determined taking into account the costs of providing and organizing personal assistance, the efficiency of their use and the specifics of providing this assistance in the territory of the municipality.
1 percent the municipality cannot determine the rate, because the hourly rate of purchased or financed personal assistance consists of:
1. Salary of employees providing personal assistance (including state social insurance contributions, employers’ social support in money) – not less than 75 percent of the hourly rate;
2. Wages of employees organizing personal assistance (including state social insurance contributions, employers’ social support in cash), costs of training and business trips of employees providing personal assistance, and costs of purchasing communication equipment and communication services, transport costs related to the provision of personal assistance, other the cost of purchasing goods and services related to the provision of personal assistance – no more than 25 percent of the hourly rate.
This means that the salary of a personal assistant is at least 75 percent. the set hourly rate, that is, it can be more.
The need for personal assistance is determined by a municipal social worker who fills out a questionnaire together with the person.
If, after assessing the need, it becomes clear that the person does not have enough assistance from a personal assistant or needs a different type of assistance, the person and the institution providing other services are informed about this in order to assess the need for other services. If a person does not agree with the decision made by the municipality regarding the need for personal assistance, he has the right to appeal this decision within 1 month from the date of receipt.
The provision of personal assistance in municipal territories is controlled by the Agency for the Protection of the Rights of Persons with Disabilities.
Tags: story Vilnius woman municipality cut quarter salary sons assistant leave survive
