Adulthood and More for People on the Spectrum in Germany

[Ed. This is part of the international perspectives series]

Adulthood
Since my son is only 8 years old, I am not too familiar with the situation after school yet. I hear from the parents with older children that they start to have more problems when the young adults leave school, usually at age 18. There are vocational training programs to integrate people with autism into regular jobs, there are also special workshops and day programs, but I hear that it is quite difficult to find a place that fits. Also, there seems to be a shortage in good living situations: there are some group homes that seem very good but do not have enough openings, and there are long waiting lists to get into a good group home. Some members of our parent organization are currently working on new projects for autistic adults concerning work and/or living. There is no doubt; as diagnosis numbers rise, we will have more and more adults on the spectrum. Both the German government and society will have to find new, more and better solutions for adult care and inclusion.

Disability ID & Caretaking Act
There are a number of additional services provided by the German government. Once the child is diagnosed, parents can go to a governmental office and apply for a disability ID. The office will process the application by evaluating doctors' letters. The ID will then state the degree of handicap (in case of Early Childhood Autism: 100%) and will also state other needs (H – helpless on his own, B – needs to to be accompanied at all times, etc.) These codes can be translated into certain rights. For example, if the child needs to be accompanied at all times and is helpless on his own, the accompanying person will not have to pay for public services. For example, entrance to the zoo will be free for the accompanying adult, and even traveling all throughout Germany on a high-speed train is free, as children under the age of 14 don't have to pay, and the accompanying adult doesn't have to pay, one just shows the conductor the child's disability ID. This is one of my favorite benefits: it allows us to visit my parents and grandmother, who live 400 miles away, as many times as we please without having to consider travel costs.

Once the ID has been processed, it can also be handed into the health insurance and they will send a specialist to evaluate the level of care needed at home. Any family will then receive "caretaking money" from the health insurance, regardless of the family income. There are three levels of care:
• Level I pays 215 Euros each month ($272)
• Level II pays 420 Euros/ month and ($533)
• Level III pays 675 Euros/ month ($856)

The concept of "caretaking money" was introduced in 1995 as part of the Caretaking Act. It is a means of acknowledgment of the work that a family does at home, as well as a means of encouragement to provide care at home rather than sending a family member with a disability to live in an institution. So one has to realize that this is not really an altruistic gesture from the government. The Caretaking Act actually tries to reduce costs, because providing around-the-clock professional care in an institution is much more expensive than awarding a family with "caretaking money." Since families with disabled family members supply care regardless of their income, politicians made it a point that such an acknowledgment could not be tied to or affected by income. Families can spend this money whichever way they want. The payments have just been increased as part of the reform of the Caretaking Act, effective July 1, 2008, and will gradually be increased further.

Also, the reform of July 2008 implemented a new health insurance service: families can now get an additional respite benefit of 100-200 Euros per month. This benefit cannot be received in cash, but only be used through a caretaker service, which is registered with the health insurance. Payments are again independent from family income. For example, parents can use the caretaker service in the evenings or during weekends.

The Caretaking Act of 1995 also contains other benefits, for example for health care products and assistive technology (we just received a talker through that service), as well as benefits of short-term care. In case a single parent has to go into the hospital, for example, the child can stay in a children's group home for short-term care and the health insurance will fully cover the costs. The Caretaking Act also provides a benefit of convalescent care which can be used every 2-3 years. The child and one parent can live in a specialized spa-like house for three weeks where they receive health treatments like massages, attend gym classes, go swimming, can see a psychologist on staff if wanted, attend parent self-help meetings etc. This benefit is a means of respite for both the child and the parent. Some activities offered in the house are for mutual activities and some are separate from each other. Upon arrival at the facility, an individual schedule is being devised, which should provide three weeks of "active relaxation."

All of these services aim at enabling a family life beyond institutionalization, giving the caretakers the strength to sustain stressful situations, in the belief that the family member with a disability will also benefit from stable, healthy and balanced caretakers. (The Caretaking Act is not only effective for disabilities, but also for chronic illnesses and care for the elderly, so that people are encouraged to care for their elderly parents at home. However, benefits vary depending on the degree of disability and the coded "level of care.")

I think this about sums up services in Germany. Even though we like to complain about the bureaucracy attached to all services, I feel that services and benefits are quite comprehensive, especially financially. However, I also feel that education can be improved in the area of autism specific education methods, and society as a whole needs to open up more to the concept of inclusion in every-day life.