Living a self-determined life through Personal Assistance

If you want to live an independent life, you sometimes have to take advantage of assistance services. What might perhaps sound contradictory to some, is obvious for many persons with disabilities: Personal Assistants make it possible for them to life a self-determined life. And once you have used this service, you won’t want to be without it anymore.


Photo: Wheelchair user and her Personal Assistant; © Romashova

Personal Assistants are an important support in everyday life for people with disabilities; © Natalia Romashova

Personal Assistants help persons with usually physical disabilities wherever they need support at the time. This might be the case with daily routines and activities such as shopping or personal hygiene but also in a career environment.

"Many persons with disabilities and assistance needs don’t know they have the option of organizing their assistance on their own," knows Barbara Vieweg of the Independent Living in Germany Interest Group (German: Interessenvertretung Selbstbestimmt Leben), ISL. "And even if they have the information, there is usually a lack of helpdesks that assist them in filing an application, conducting a needs assessment and invoicing."

According to Vieweg, the lack of counseling and support structures is one of the reasons why there are partially such big regional differences in the usage of personal assistance.

Not a nine-to-five job: Personal Assistance

Sima Surkamp has been a budget consultant with the Assistance Service Düsseldorf since 2014. The trained healthcare management associate assists with house hunting, applications for a personal budget and all questions pertaining to Personal Assistance for example. Surkamp consults using the peer-to-peer principle. "I have already gained some experience in this area and like to share it with others as needed."

For many years, the 35-year-old paid her assistants out of pocket because the necessary Personal Budget was initially not approved. In the town she lived before, she was one of the first people to file this application at that time. "The first budget is always the hardest one," confirms Vieweg. "A social services office that has never approved a Personal Budget or Personal Assistance services is frequently overwhelmed and afraid of overspending. Too often, the action is based on available services and the person is not the focus of considerations."
Photo: Sima Surkamp and Sandra von Ameln; © beta-web/Nadine Lormis

When Personal Assistance turns into friendship: At REHACARE 2015 Sima Surkamp and Sandra von Ameln talked about their special relationship with each other; © beta-web/Lormis

Once Surkamp moved to Düsseldorf for her job, however, her assistance services were approved in a quick and easy manner. In early July of 2014, she met Sandra von Ameln through a social network site. She has been Surkamp’s Personal Assistant since August of 2014. Von Ameln also provides job assistance and handles approximately two-thirds of Surkamp’s assistance needs. The other third is handled by another male assistant. Over time, their acquaintance went beyond the assistance aspect and resulted in a friendship.

"The assistant job is not a typical nine-to-five job," says the 40-year-old assistant. "When you spend at least 180 hours per month with a person, getting closer happens virtually automatically." Despite their friendship, however, von Ameln is still Surkamp’s employee. "When it comes to decisions like 'should I get an assistance dog or not', I state my opinion but she is the one that ultimately makes the decision," emphasizes von Ameln. Both admit that they share occasional differences but that "these healthy disagreements clear the air".

Participation thanks to assistance

Having said that, not all assistance providers and recipients develop this kind of friendship. Many explicitly don’t want this to happen and clearly separate the two. Exactly what the relationship should look like with your personal assistant is something every person should ultimately decide on his/her own.

Meanwhile, the two women from Düsseldorf have found the right path for them. Personal Assistant von Ameln stresses that she has learned a lot from her boss and friend "about accessible environments and people in general. But above all, I learned something for life."

Surkamp is also completely satisfied with her life today. "My work with the Assistance Service Düsseldorf has helped me a lot in growing up." Since she was not only aided but also challenged in her position as a budget consultant, she was able to grow in her responsibilities – and her personality. She also keeps pointing out how much the Personal Assistance service enriches her life. "Thanks to my work and the assistance I receive, I am not only a mother but also an employee, boss, friend – and, therefore, a sought-after member of society."
Photo: Nadine Lormis; Copyright: B. Frommann

© B. Frommann

Nadine Lormis
(Translated by Elena O'Meara.)