In Germany people must pay for personal assistance themselves, until their income and assets are almost exhausted, unless they have insurance cover. “You can have a maximum of 2600 Euros in assets and retain from your income each month 800 Euros plus enough money to pay your rent.” says Corina Zolle, who has employed her own personal assistants for 20 years. “Compared with Germany, Sweden is a paradise.” She adds.
Persönlichen Assistenz (Personal assistance) has been available in Germany since the eighties says Corina Zolle. ”The number of people is increasing slowly, today there are a few thousand people who have assistance, I do not know exactly, there are no statistics.”
In principle, anyone who has a disability can seek and receive assistance if they have enough strength and endurance to deal with the authorities, says Corina Zolle. There is no 65-year limit like you have in Sweden.
”You can apply regardless of age and level of disability does not matter, but it becomes more difficult, the older you are. It's good if you can hire an attorney who can support you.”
How is it determined how much assistance a person gets?
“The extent of the assistance is determined by a doctor employed by whoever handles your application for assistance. It is often a matter of luck, depending on who you meet.”
The right to organize your own assistance via a personal budget has been in existence since 2001, through the law Rehabilitation und Teilhabe behinderter Menschen (SGB IX). It became a right to seek a personal budget in 2008. Despite of this Corina Zolle is very critical of how the system works, especially how personal assistance is financed. The conditions differ, depending on who pays the money.
“The best support is had by a person injured at work, because every employer must have insurance to cover all costs for accidents, often lifelong costs. Second best, a person whose injury is covered by another person’s insurance. In both cases though, the recommendation is often that people end up in an institution. Personal assistance is still relatively unknown.”
How does it look without insurance?
“If you have a disability, that you, figuratively speaking, can’t blame someone else for, it becomes quite difficult. If you need medical assistance (for example, respiratory support in the home), health insurance is responsible and pays the cost regardless of your income. Otherwise, the aid will in most cases be paid from Sozialamt (municipal social) in the municipality. Then you must use up your and your husband's / wife's assets down to € 2 600 (26 000). From your income you may keep about 800 € (8000) per month plus the rental cost.”
Again, living in an institution it often recommended says Corina Zolle, then the cost is taken over by Land (state)
“If someone wants to stay home municipality has to pay. It is not so welcome because its considered as more expensive, especially if someone needs a lot of help.”
Corina Zolle lives in Heidenheim am Rhein in Rhineland Pfalz. She has personal assistance 24 hours a day. Health insurance pays for 4 hours a day because she has respiratory problems because of a muscle disease. The rest is financed through Sozialamt.
“Because of this my income is tested regularly, I see to that I do not earn too much, now I pay only 100 € per month to Sozialamt. I have no assets; I'm not supposed to have any. If I want to make a major purchase, I ask my parents if they can lend me money. I am 50 years old, so this will not work for long.”
She explains that her parents got a lawyer to write a will, so that she will not inherit their house.
“Otherwise, it would be regarded as an asset that must be paid to finance my personal assistance.”
Anyone who has a personal budget for their assistance can either hire a Ambulanter Pflegedienst (private company), a charitable organization like the Red Cross or herself to be an employer of the assistants. Corina Zolle has been an employer for 20 years.
“I am very happy with it. Having said that it is my job to advise others how to do the same.”
How common is it that the assistance user is the employer?
“It's pretty rare, because so few believe they can do it themselves”.
Most people with disabilities live in institutions Wohnheim (houses with rooms or apartments) or Pflegeheim (nursing homes) tells Corina Zolle. The structures of institutions, nursing homes and special schools are strong in Germany. There is resistance that residents leave these from the authorities, from relatives, those who run the institutions and from the disabled themselves.
“The latter are often afraid to leave their protected environments and need good role models. Many parents want their children with developmental disabilities to live there, because they think they are taken care of. Often, they work themselves there. People with physical disabilities, who have a huge need of help often live in institutions because it is claimed to be cheaper compared to living with personal assistance in their home. Only a few manage to live independently in their own home.”
Conditions in institutions are not very good says Corina Zolle, because there are constant staff cuts.
“Again and again, we read of scandals in the press about the conditions”.
Corina Zolle works as a molecular biologist but for the last two years her main occupation has been to provide assistance users advice on how to use personal assistance and to be employers for their assistants. At the local level there are centers (eg Selbstbestimmtes Leben Bremen)) run by disabled people who provide advice and support to those who want to live independently.
“National are e.g. Interessenvertretung Selbstbestimmtes Leben in Deutschland in Germany and some other”.
Are there political parties supporting Selbstbestimmtes leben?
“Yes, Die Grüne and Die Linke”.
What do you think about the Swedish system of personal assistance?
“Compared with Germany, Sweden is a paradise when it comes to personal assistance. One disadvantage I see is that you are not entitled to assistance if the disability occurred after age 65”.
The disability movement in Germany, has according to Corina Zolle been successful in establishing the concept of personal assistance, an employer model and an infrastructure to support assistance users. But there is no specific legislation for personal assistance, it is governed by different laws, depending on what caused the disability. There is however work on a new law that will take effect in 2017 says Corina Zolle. The legislation will be public in mid-March.
“I have seen a draft from December 2015 that is not official and that is very bad. I cannot see the improvements that have been previously announced. Anyone who still wants to live outside the institution would have to seek other people with assistance, move together with them and share assistants. Income limits may be calculated in a different way. The draft law states that you should keep about 1,600 € instead of 800 today, but the rent is included in that amount”, says Corina Zolle.
“Because it is virtually impossible to find a vacant apartment in a major city for less than 800 € per month, this is no improvement”.
Other proposals in the draft legislation is that the asset limits are increased and that partners, financially, are only to a small extent affected.
“It sounds good at first, but this applies only to "Eingliederungshilfe" (means to participate in society) and not for "Hilfe zur Pflege". (Assistance with hygiene tex). Since most people with assistance receive compensation for "Hilfe zur Pflege" only a few will gain from the new law. Our government clearly believes that too much money has been spent in recent years”.
Most insurance companies pay money directly to a Ambulanter Pflegedienst or the persons who organize their own assistance. The personal budgets, which are paid directly to the assistance users are often small, but there are budgets at 10,000 or € 15,000 per month, says Corina Zolle.
How many hours assistance do a person usually have?
“There are no statistics, but it is unusual to have as much as 24 hours per day since the night hours usually count as being on call, and I know of only three people in the whole of Germany with more than 24 hours / day”.
Is there money for expenses of assistance, for example, travel and accommodation costs for assistants?
“By law, this possibility exists, but only a few people know this. You have to fight for it in court with a lawyer”.
Are there rules for how the money is spent?
“Most payers are extremely afraid of cheating. The burden of proof is therefore often huge. Each insurance company may require as much as they want. It often leads to harassment, especially if it is likely that a nursing home would be cheaper”.
The salary for an assistant depends according to Corina Zolle usually on the assertiveness of assistance user towards those who pay.
“Since last year, however, there is a minimum wage of € 8.50 per hour, which now serves as a lower limit”.
Must assistants have special education?
“It is required only when someone needs special medical treatment such as artificial respiration”.
What is the limit for what a personal assistant can do?
“There are no rules, unless it concerns medical devices, that can only someone with the proper training do. The limits are set by the employer”.
Can family members of persons with disabilities work as personal assistants?
“In exceptional circumstances, it is allowed by those who pay. In general, family members work without remuneration”, says Corina Zolle.