Christian Bayer’s most important issue is means-tested personal assistance. People who have a job and earn money have to pay for their personal assistance themselves.
According to German law, people in need of personal assistance can get money from the State for it. Yet, unlike Sweden, the payments depend on your income and property. People who have an income and earn over a certain level have to pay for their assistance themselves.
“I don’t want to pay for my assistance, so I work part-time to avoid exceeding the income level. If the level were higher, or if there weren’t a limit, I would be able to work more.”
Christian Bayer is attending the conference (25 years of Independent Living in Sweden November 2008) because he has personal assistance and feels it is an important issue for him and many other participants in the European Independent Living network.
“I’m a European citizen and want to know what’s happening in Europe. It’s interesting to find out about different influences.”
The situation is not bad in Germany, but it could be much better, according to Christian Bayerlein. “The politicians feel it would be much too expensive if the government were to pay for all personal assistance one needs. Having personal assistance is a human right. It shouldn’t depend on economics. Other areas in society are much more expensive, like the military and the air force.”
Germany has a handful of personal assistance user cooperatives – the oldest is in Bremen – that serve as employers for the assistants. Assistance users often share their assistants with other cooperative members and a staff member in the office schedules the assistants. However, most people with disabilities hire their personal assistants themselves. The government pays and ensures that the money is used for the intended purpose, but the people with disabilities are responsible for the administration.
“I like it because I can handle it, but it’s a problem for many people because there isn’t anyone between you and the assistant if there are any conflicts. You have to be able handle the paper work yourself such as paying the employer contributions to social security and withholding taxes. Some people with extensive disabilities are unable to handle these tasks. Support is available, but people rarely receive it.”
Getting the necessary support is no easy task. Assistants are paid by the hour. The pay varies depending on where people live in Germany. In some parts of the country, assistants receive only € 9 per hour, including employer contributions and taxes.
In addition to income-based personal assistance, Christian Bayer feels that education for children with disabilities is an important issue.
“We have different types of schools in Germany. Whether children can attend a regular school is highly dependent on whether the school building is accessible. Sometimes accessibility is good, but the children are unable to get the assistance they need.”
Institutions are mainly run by churches and charities. They are changing from large complexes to small group homes. New institutions are also being built.
“It’s possible to lead a normal life in the community, but people have to fight hard for their rights. Living in an institution, on the other hand, is much easier. Many people are not able to look for an accessible apartment, apply for assistance or find a job,” says Christian Bayerlein. In an institution you don’t need to worry about all that.
Many have grown up in institutions since they were young and it takes a large dose of courage to move out and live a normal life.
Christian Bayer lives in a city 100 km north of Mainz with a population of 100,000.
“Accessibility is relatively good. You can ride the bus with an electric wheelchair. Trains aren’t an option because the stations aren’t accessible. And service isn’t available after eight in the evening.”
In Germany people with disabilities receive a car subsidy if they have a job and need the car for their work.
Christian Bayerlein was interviewed by Malin Bernt on Nov. 28, 2008