Big Freedom. How A Nursing Home Resident Became Her Own Boss.

This article is presented by the magazin HANDICAP.

Disabled people often get to hear that they cost a lot. Some of them think: “If I had the power to handle that money I could use it much more efficiently.” This describes the idea behind the German personal budget which has been tested in model projects since 1998. In July 2001 it was admitted into social act IX; since 2008 this payment is legal a right. Putting the budget into practice needs some courage – but it is worth the effort, as an example from Mainz, Germany, shows.

15.03.2008

Julia goes shooping for her own flat © Lothar Schwalm

Loaded with bags Julia Maier* is coming home from shopping. What sounds trivial is a little sensation for the 45-year-old woman. For twenty years she had been living in only one room in a residential home for people with a mental handicap where she could not even lock the door behind her. “Actually, I’m not mentally disabled, but when my mother could not care for me any longer on her own there was no other alternative for me to live”, explains Julia who is suffering from spastic paralysis by birth, “I had to promise my mother not to leave the residential home.”

The housemates were nice, nevertheless Julia was out of her element: “People told me I was taking away room for other stronger handicapped people”, she reports. The paternalism and rules like meals at a definite time were getting on her nerves. Julia wanted to get out of the residential home but she was also afraid of living outside.

However, Julia received psychological and practical support for her move from the Centre for Self Determined Life (ZsL) in Mainz, Germany. Parallel to counseling sessions the flat-hunting went on. Until they suddenly had to hurry: “We talked a lot but when a flat was available I told Julia that she had to act immediately”, explains counsellor Nicola Niklas. Since Julia only earns little money in her sheltered workshop the flat was a windfall for her: big enough, barrier free and acceptable in terms of price for the social welfare office.

The handicapped woman started a new life: she chose a nursing service on her own and when she was discontent she took a new service. These people care for her during the week. At the weekends she employs her own assitants. This is what really makes her proud. “With my employees I can decide who works for me and how long I need help”, she explains. Being a boss is a great experience for her.

"Help the way it is needed" ("Hilfe nach Maß"): thanks to this program Julia has her own freedom. Everything a disabled person needs for an independent life is negotiated with the social welfare office and converted into money. The affected person gets this amount as a personal budget. When moving into a new flat also necessary purchases are included. So Julia could buy a barrier free kitchen where she can prepare food independently.

For many other everyday doings she still needs help since she also has a learning disability in addition to her physical restrains. Her previous life where her mother or the nursing staff decided everything marked her. Indeed, Julia is eloquent and knows what she wants - but she is on bad terms with numbers, she can hardly read or write. Due to this she also pays the pedagogic support by two people from the ZsL Mainz from her personal budget. They help the wheelchair driver to arrange her life six hours per week.

This kind of help is offered to many people with learning disabilities or psychological diseases and some of them could reduce support after a while or even do without it. Those who receive the personal budget in Mainz built a group of regulars. Julia goes there, too. After long protected years she catches up on meeting other people and enjoys it. Julia Maier’s mother could not witness her daugher’s move-out. But Julia believes she would have been proud of her.

*Name changed by editors

© Ursula Obermayr