Mari (32): – They would observe me and my boyfriend at night

Thursday, September 6, 2018

Mari Storstein (32) works as a documentary director.

She has a job, a girlfriend to come home to and a family she loves. A small detail separates Mari from the rest of the population. She sits in a wheelchair.

But this little difference has led Mari to create many challenges.

Mari suffers from spinal muscle atrophy and has had help from the public as long as she can remember.

At the age of 18, she was granted user-assisted personal assistance (BPA) for the first time. A scheme that allows Mari to organize and manage her assistants, something she is very pleased with.

Fight for help

When Mari was 26, she moved to Lillehammer to take further education. She began documentary film registry, and after completing studies, she decided to move home to St. Hanshaugen in Oslo, the district she has grown up in and is familiar with. But the welcome home was not quite the way she had hoped.

For almost a year, she had to fight to get back the help she’s totally dependent on. Mari needs assistance around the clock, and the district wanted to reduce her hourly rate at night. They wanted to check if the need was the same, something Mari’s eyes are strange as she has had the same need throughout her life.

This is BPA

BPA stands for user-controlled personal assistance.
The arrangement entails that the user himself is to be the workforce for his personal assistants and decide what the person needs help with and when it is to be given.
The municipality pays the assistants.
In 2015, the right to BPA was statutory. The legislation states that the municipalities must ensure “necessary health and care services”.

Sources: Norwegian Handicap Association, Ministry of Health and Care.

But that was the way they wanted to control the need for Mari to rage.

– They would come home to me and observe me and my girlfriend repeatedly over a period of two weeks. They wanted to see how much help I needed, says Mari to TV 2.

The argument for the district was that Mari had now a boyfriend. The district meant, according to Mari, that he would be a security. But Mari will not be dependent on her boyfriend.

She explains that she felt at a pressure and that the district threatened to remove her hours if she denied the visit.

She decided to fight the district. The 32-year-old was in a number of meetings and was able to document the assistant’s need with medical certificate and documentation from Ullevål Hospital, Physical Therapist and Employer. And not least – find out how she experiences her everyday life.

– It should count high. Who knows his life better than himself? An observation for a day or a week will not give a complete picture of my life and my need. No days are the same, she says.

Felt offended

Mari felt disturbed and violated by the request for the bedroom visit.

“I do not know if anyone else would have accepted it. It seems like we who are in a wheelchair will require less and expect less than others. That we have a lower value. It is not desired and expected in 2018, she says.