Eternal children. Why we wrote this / Article / LSM.lv

Today, 15:24

Authors:
Sanita Jemberga (Head of “Re: baltica”, editor)

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At the end of last year, wandering through social networks, hit the video, in which a group of parents asked the President to help them not burn out and place their seriously ill children in orphanages. Dropping the cynical “not the right addressee because he has no say in it,” I started watching the video, and after a short time I couldn’t hold the ball in my neck. Because the message was simple – we are not asking for anything special. We also want to live and work just like you – we just can’t. –

There are about 8,300 disabled children in Latvia: as many people as live in Bauska or Iecava region. 2548 of them need special care, which means that nothing will change significantly in their lives until the end. They will be eternal children, but at the same time invisible, as will their problems. These are the children of the parents shown in the video. They will always need someone to accompany, lift, move, feed and love them. But looking at the tired faces of parents and thinking about the healthy brothers and sisters whose lives are subordinate to the special children, it is clear that they are carrying an inhumane burden and quietly breaking away from all eyes.

So, after watching the video, I picked up the phone and called the heads of both social media news outlets (agreed at the moment) and offered to create a joint series with the aim to:

1. The system of assistants is being put in order, both by giving them a decent salary and social guarantees. At the moment, the hourly rate is tied to the minimum wage, and there are not enough hours to meet even that way – so there are not many people who would like to work for this money and without the possibility of a vacation or sick leave. Assistants are not taught anywhere: until recently, no one had completed the State Employment Service course. As a result, their children are often assisted by their parents, who, like a vicious circle, cannot work. Because families are often without a second parent who has not endured the daily hardship, the remaining parent is pulled alone, socially isolated and on the brink of poverty.
2. In Riga, where there are the most clients, a day center and group homes for adults with special children are being set up so that parents can work and live.
3. The third is a long-term process: we as a society need to change the way we think that they go to their special schools, and we comfortably continue not to see their parents’ problems. Because many of the pain cannot be solved with money. It is both a bureaucratic attitude, demanding to be accountable for every hour – where you were, what you did – to pay the assistant. Both the lack of information in one place about what they are entitled to (some services are provided by the state, others by municipalities, and thus – how lucky they are with the place of residence). Every step has to be fought – even things as absurd as children with irreversible disabilities should not be required to undergo an examination from time to time, because they would never be better off. And this is the attitude of not being pushed out of the taxi because the autistic person is screaming, or not being driven out of the playroom because he is “disturbing others”. That child in the room will not be forever. A little tolerance would be helpful.

Unusually for us, this time the series is simply real human stories, each at the end reminiscent of a goal. We want to show their lives from abstract people to real ones. Colleague Ieva Alberte, the author of the series, first told how life changes when a special child enters it. Let’s show the daily life of one parent. Let’s show how much not only money means, but also attitude. As in Riga – and as in the regions.

The good news is that the solution doesn’t need that much. Prior to the start of the Covid-19 pandemic, the Ministry of Welfare had shown the Parents ‘Initiative Group a number of offers to address the issue of assistants’ pay. The most sensible option required an additional 19 million from the state and 4.1 from local governments from the 2021 budget. At a time when the treasury has a reserve to deal with the consequences of a pandemic, it would be the right time to finally solve this problem. Before that, Prime Minister Krišjānis Kariņš was ready to meet with his parents and solve. It’s time to come back to the thought: and draw.

The second is the extraordinary elections of the Riga City Council on August 29. Dear candidates, take someone as a promise to set up a day center and group home and lead to the result. Parents are your constituents.

Because it is very difficult to look into the eyes of the first heroine of the clip Anete, who said goodbye in one of our conversations: “I am the wedding organizer. Just yesterday, one young couple said: how can you be so happy given the circumstances. Well, I’m not saying that my doctor increased my antidepressant dose yesterday. “