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Organisation of personal assistance

A user of assistive breathing technique devices, probably needs help with both health and non-health related tasks. For example, help with respiratory support devices and masks, and tasks such as cooking, shopping, running errands, work and company when attending social activities. The tasks vary and the help can be organised and received in several ways, so it is a good idea to consider how the help can be best organised.

What rights do I have?

The Legal Rights Centre has web sites that may help you. The Norwegian Association of the Disabled also has a web site with information that could be useful to you.

About home care

When using the home care service/community nursing service, one receives help during the day at specific times or if, for example, the safety alarm is triggered. It might not always be the same person. You may also have a support person to assist you with social activities, etc. In the following, you can read how Jørgen has organised his daily life.

Jørgen’s opinion on user-controlled personal assistance

The help I need is organised through user-controlled assistance (BPA). I organise the hours assigned to me by the Borough Administration Unit myself. I choose how and who to employ, and I organise the timetables of my assistants to suit my daily life. So, if I am tired one day, I just sit at home and watch TV. On the other hand, if I want to be sociable and go into town, my assistant will accompany me. That is, I choose the work tasks to be included in each assistant’s job description.

For me independence is a keyword: Being able to decide who I want in my home, when and where I want help, and to organise my own day so I can live my life the way I want. I believe that these factors must be in place in order to be independent.
I feel that this scheme helps me live a more free and independent life on my own terms. I would not have had the same choices with traditional home care. Of course, managing one’s own staff is demanding, but even though it may sound complicated, I believe that most people could cope with a little follow-up from the service provider.

Tasks and training

My assistants also handle my technical breathing devices. This is something that anyone can learn. In my opinion, one does not need healthcare qualifications in order to learn how to use the equipment that I use. When employing assistants, I like to give them training on how to use the breathing machines, mask, etc., myself, as it is important to me. Through the years, I have developed a few routines on how to use and maintain the equipment. I know these routines the best and I believe that I have the competence to train others. I am not saying that no other routines could work better, but in cooperation with employees over a long period of time, the routines have been tailored to my helpers and me.

Taking responsibility for your own health

Taking Responsibility for Your own Health – text version

It is important for your self-image that you take care of your health. If there are health professionals around you then your chance to control your own health is often taken away from you. This is how we control our own life. That you can decide which people you have around all day. It should be people you both trust and that you know have had the right training. Also, it’s a human right to make mistakes. Should the municipality take away your chance to decide over your own life because they’re afraid you’re going to make a mistake. Nobody can decide over other people. Nobody can check that you go to the doctor and take your medicine. Why shouldn’t we decide over ourselves just because we can’t lift the sandwich to our mouths without help. With good training it’s no problem for a person without authorised medical training to change a needle. And it can be a good idea to do it at home, because that’s where you are. Maybe you shouldn’t go to the hospital because there are more germs there than in your house. So if you keep good hygiene when you change the needle, you can just as well do it at home.