– How would it have been for you if you didn’t live in Norway, and were forced out to work? – It would have been tough. If I have to sit upright for more than a few hours, I get pains and am exhausted afterwards. The thought of doing it every day… Hedvig (21) is chronically ill. She stops and thinks a bit. – I would be miserable, and probably become significantly worse. At one point I wanted to walk on the wall. Imagine that you are in your early twenties and have your whole life ahead of you. You have a place to study, have finished high school and are on the threshold of student life. But then your body says stop. Young, disabled and outside – It is difficult to see others my age gaining work and life experience, says Hedvig Sandsdalen-Mytting. The number of young disabled people in Norway is rising. Almost everyone who ends up in this category ends their working life there. Last autumn there were around 22,000 disabled young people in Norway. Less than 0.5 percent have found work. This shows new figures that NAV has calculated for news. When Hedvig was 17, she was infected with hare plague. A small mosquito bite led to a severe infection. The after-effect was the disease ME and chronic pain. What does it take to become disabled as a young person? Young disabled persons are those between the ages of 18 and 29 who received disability benefits. In order to be entitled to disability benefits, illness and/or injury must be the main cause of your reduced ability to work and earn. In order to be granted rights as a young disabled person, the following requirements apply: You were born disabled, or became at least 50 per cent disabled before you turned 26. A doctor or specialist has documented that the disease led to disability before you turned 26. You apply for disability benefits before you turn 36, if you have been more than 50 per cent professionally active after turning 26. Young disabled people are guaranteed a higher minimum rate than other disabled people. If you are young and single, the minimum annual disability benefit is 2.91 times the basic amount in the national insurance. This corresponds today to NOK 345,184. Source: Nav That it marked the end of secondary school, her old Russian trousers testify. Although the 21-year-old has now accepted the illness, it has taken time. – It’s a strange anger, because I can’t get angry at anything. I’m mad at a mosquito. That mosquito died a long time ago. Hedvig actually wants to become a researcher or author. Preferably both. After a year at Folkehøgskule, she moved to Ås and started studying biology. The subjects were interesting and the willingness to learn was great, but his health gradually got worse. Finally she had to cancel. Now Hedvig doesn’t know what to answer when people ask what she does for a living. – It gets quiet when I say I’m not doing anything. I wish they would rather ask why. For a while she said she was studying biology. Despite everything, she was registered for subjects. – But then I have waited to say straight up that I am disabled. Or say that I am chronically ill. It’s the easiest thing. Some days Hedvig has more energy than others. Photo: PRIVAT Photo: PRIVAT Make-up has become an important hobby, which does not require much. It is about gaining control over the everyday and over oneself. – When I got sick so young, I lost the sense of control over my body and what happened to me. Having an invisible illness can create prejudice in some people, Hedvig believes. Some might think she is lazy. – It wasn’t a lack of resources that caused me to get sick. It was total coincidence. Back to start Now Hedvig has moved to the childhood home to get help to take care of herself. – It went beyond my dignity to live on my own. Here she has the entire basement with her old bedroom and her twin sisters’ room. Memories from holiday trips and study stays hang on the walls. She spends her days reading, writing, drawing, knitting and working out, if she can. Often in the company of pets. Three cats and two birds. Standing a bit on the sidelines, on “wait”, is something many young disabled people know about. – Personally, I think it’s sad because it’s very lonely, says Hedvig. – There are so many important blinks of an eye now in this time of life, which I and other disabled people miss. Hedvig has been around several times in the public sector, but also in the private sector. The family has spent a lot of time and money on various treatments for Hedvig to get better. Hedvig has not given up. On a good day, she manages one or two things. Knitting is perhaps one of them. One sixth of the national budget It costs society between NOK 17 and 20 million for each young person who becomes disabled. Figures from the Vista analysis show this. That is roughly as much as a fifth of the state budget for this year. The largest is the category of disabled young people with mental disorders. – We cannot continue to park young people. I think many more can and want to contribute. This is what Høgre deputy head Henrik Asheim recently told news. He proposes scrapping disability benefits for everyone under 30. Paul Omar Lervåg (34) has been disabled since he was 18. He is one of the young disabled people who have not been able to find work. – Neither the autism nor the ADHD should lead to me not working. This means that working life must become better at making arrangements for people like me. Paul Omar has always dreamed of a house with a small garden, close to Oslomarka. It is far from the flat with tiny dormitories and a bathroom shared with seven strangers. In one of the most expensive neighborhoods in Oslo, he rents his own small property. Here he has game characters from the Middle Ages and outer space. No light reaches his world through the snow-covered skylight. All his belongings are gathered by the bed. – This is somewhat in line with people’s perception of young disabled boys who sit inside and play computer games, he laughs. But the computer games were useful in the recently submitted master’s thesis in rhetoric and communication. He is proud of that. Now Paul Omar wants out of the confined room and back to work. – I want to go in, he corrects. Into working life, not back. He hasn’t been there yet. The only impression he has of working life is from the TV series “The Office”. The bookshelf contains everything from the first book he received as a child to Icelandic textbooks. He is currently writing a collection of essays about autism, but he has not yet applied for a job. – It is very scary to enter something that is completely unknown. I’m afraid of the uncertainty, he says. He tries to envision a workplace where he can benefit from both his knowledge and education. He could be a good resource in the Nav system, he believes. – I have a user experience that most employees in Nav do not have. – It is important to understand the people behind the diagnoses and their background stories. Everyone is unique and needs unique solutions. I want to feel that I am contributing to society, he says. Job on prescription Paul Omar makes the trip to the Frischsenteret, where they research social economics. Here he meets researcher Knut Røed to talk about how everyday life for disabled young people could be simpler. – You do not necessarily end up on disability benefits because you cannot work, but because you function in a way that is not compatible with working life. Paul Omar proposes that disabled young people should be allowed to work as much as they want, while receiving both social security and wages, for a period of two years. That would have motivated more people to work, he believes. Knut Røed has sat on the employment committee, and looked at how to help young disabled people into work. Disability is the last thing that should happen to young people with mental disorders, believes Røed. Nevertheless, he does not completely agree with Paul Omar’s proposal. – It will appear unfair that people should be able to combine a full disability benefit with a full-time job, he says. On the other hand, he believes that young disabled people should be allowed to work at the pace they want. That, for example, they do not need to have a working capacity of 100 per cent, but are paid for the percentage they are able to work, and that disability insurance covers the rest. Then both society and the disabled will come out better. – In any case, young people with mental disorders do not get better from having nothing to do. For many, getting into work will actually be a real help, also with regard to health problems, says Røed. – They should get a job on prescription. No regular follow-up Nav has no systematic follow-up of young people after they have become disabled, says Åshild Male Kalstø, senior adviser at Nav. It is the young people themselves who are responsible for making contact, when they have improved and want to get a job. Many people refuse to contact Nav, says Kalstø. One of the reasons, according to her, may be because they have been through several years of employment verification and discussions with Nav about their ability to work. How should the Ministry of Labor and Inclusion follow up young disabled people? Answer from Labor and Inclusion Minister Tonje Brenna: Our aim is that even more disabled people will combine work and disability benefits, and that those who already do so will do so to a greater extent. That is why, among other things, I have started work to look at whether the amount you can earn without being deducted from disability insurance should be increased, reduced or continued to be as it is today. If today’s rules stand in the way of people being unable to work, something must be done. We must never give up on the young. There are many reasons why someone becomes disabled at a young age, and we have many measures to help them further. NAV, the healthcare system, the school and education system must work together, as when job specialists from NAV know young participants in training initiatives. In the spring, I will submit a report to the Storting on labor market policy. There we will also discuss what kind of new political measures we can take so that even more people can get or stay in a job. The future Perhaps Hedvig faces a similar future to Paul Omar. Whether she will become disabled after two years of work verification money is not entirely certain yet. – Realistically speaking, I have been ill for almost five years. Then I know that the recovery period took about that long. The way I envision the future, I assume that I will become disabled. At the same time, she wishes the focus wasn’t so work-oriented. The most important thing is not to get a job, but to feel good and manage by yourself, Hedvig believes. – I don’t see it as a defeat to become disabled. Thank you for reading the whole thing! Do you have thoughts about the thing you’ve read, or suggestions for other things that I at news should check out? Feel free to send us an e-mail!
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On the way out of society – Direct
