Alf Brun must spend at least 70,000 for a three-day summer vacation in Norway and Sweden. The municipality blames it on lack of funds.
Alf Brune (34), who suffers from ALS, has to cover the travel expenses of his assistants himself.
Alf Brun is traveling like many Norwegians this summer. At the weekend he was in Gothenburg to enjoy Goldplay. Later this summer he will visit Kristiansund with his family.
But Alf was not like other Norwegians. In 2016, he was diagnosed with a rare neurological disease ALSALSAmyotrophic lateral sclerosis (ALS). A neurological disease that causes muscle wasting. The disease cannot be cured. In many cases, the disease causes widespread paralysis and death within a few years. Source: Great Norwegian Lexicon.. He cannot speak or move.
Even breathing is a challenge that he cannot cope with without help. Alf only has months to live.
It makes vacation travel very demanding. Alf has to bring four different assistants and extra equipment with him when he goes on vacation. He hires assistants through Ecura.
Alf and his wife Anna enjoyed their favorite Gold Play live last week.
Had a dream meeting
Last fall, Alf and his family became national celebrities when they visited Copenhagen. There they enjoyed a dream encounter with Erling Brod Holland and Manchester City. During that time, Ecura covered additional costs for food and wages beyond normal working hours.
However, Alf and his family took care of the transport and accommodation for the assistants themselves.
This summer, things are different. When Alf told the helper that he had started planning the vacation, he was told that he would have to cover the helpers’ salaries in addition to working hours and meals.
This means that Alf has to cover food for 4 assistants, room for assistants and a rental car for equipment that Alf depends on out of his own pocket.
It can quickly become very expensive. Alf estimated that the total costs for one night in Gothenburg and two nights in Kristiansand would be at least NOK 70,000.
Last fall, Alf got to experience his favorite team, Manchester City, up close. At that time, Ecura covered the additional costs.
– Miss the opportunity to take a vacation
Aftenposten has obtained access to a contract for housing and maintenance services between Ekura, where Alf lives, and the municipality of Hol.
The contract states that service recipient activities, holidays and other special personal needs are covered. This means that Alf is responsible for covering these costs.
– So with these conditions, they basically make it so expensive to go on a trip that they lose the opportunity to go on vacation. This applies not only to me, but to many others who are in the same situation as me, he says.
He insists that he is very satisfied with the assistants who follow him.
Aftenposten has also seen a written agreement between Alf and Ecura for expenses related to the holiday trip to Gothenburg. It insists that Alf must cover the accrued costs associated with the Ecura trip.
The municipality did not respond to this
As Alf is unable to move, he must use his eyes to use an advanced computer program to write emails to the municipality.
On June 28, Alf took up the matter with the municipality. The municipality never responded to Alf’s inquiry.
– The worst thing is that they take away the joy of looking forward to summer vacation. I don’t know how many summer vacations we left together. They forget about the user and don’t seem to care. This is a big stress for us.
This is what Alf’s wife, Anne Brun Syverson, says.
Aftenposten recently produced a documentary about former professional boxer Nils Arne Morga and his fight against ALS.
Hells-Norge’s signature Websites For one thing, there are currently no treatments for ALS that can halt disease progression or repair nerve cells.
– It’s incredibly tiring. I communicate with my eyes, so writing and responding to emails takes time and effort. Then I feel so humiliated that I don’t get an answer, says Alf.
The municipality is aware of this
Rikke Marie Tipdahl, municipal manager at the municipality of Höll, tells Aftenposten that they are aware of the case, but tight municipal funding leaves them with no room to provide services beyond what is required by law. It also does not support vacation trips.
– Hole Municipality believes that setting up holiday travel and additional costs should be discussed with the service recipient and service provider, Dybdal writes in an email.
Holl Municipality confirms that Alf was the only one who contacted the municipality seeking support for the holiday trip. However, according to the municipal manager, they cannot prioritize the application.
– Tieptahl says the municipality and mayor aren’t sitting on extra money they can allocate.
She elaborates:
– If there is to be a change, it should come from a higher level like the Minister of Health. Hole Municipality doesn’t have its own vacation fund, but Dipdahl says there are different procedures from municipality to municipality.
Municipal Manager at Hall Municipality, Rickey Marie Tipdahl
Aftenposten confronted the municipality of Hol with Alf’s criticism that he never received a response to an email he sent on June 28.
– The municipality perceived the e-mail as a statement on June 28, which begins: I want to inform about this … and ends: I had to speak, Tipdahl says.
Dybdal confirms that Alf contacted Hole Municipality regarding the case, but they perceived Alf’s June 28 email as a statement and therefore did not respond. However, there was general communication with Alf via phone and email regarding funding and planning vacations for Alf and his family.
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