On January 1, 2023, the final reform stage of the Act to Strengthen the Participation and Self-Determination of People with Disabilities, or Bundesteilhabegesetz (BTHG) for short, came into force. The BTHG removed integration assistance from the social assistance system on January 1, 2020 and fundamentally reformed it. The new law is intended to help people with disabilities achieve greater participation and individual self-determination. Integration assistance services are to be geared to the individual needs of people with disabilities with the help of a person-centered approach.
Prof. Dr. em. Elisabeth Wacker, former head of the Chair of Sociology of Diversity, played a key role in the reform of the law as Chair of the Scientific Advisory Board for the German government's Participation Report on the living conditions of people with disabilities. In this interview, she talks about the specifics of the new legislation, the impact of the COVID-19 pandemic on implementation, and improvements in education, among other topics.
Prof. Wacker, you are Chair of the Scientific Advisory Board for the German government's Participation Report - to what extent were you also involved in the development of the new Federal Participation Act?
"My role has always been that of a scientist. On the one hand, I provided the theoretical framework, but on the other hand I also attended congresses and went on tours with ministers through all the federal states to present new concepts. We are talking about a very long period of time in which I was able to make clear why something has to be developed in a certain direction and why one is well advised to deal with the subject. Already during my time at the University of Tübingen, we were able to establish a central scientific institution with the aim of researching how the living situation of people with impairments can be improved. There, we also participated in the major reform of long-term care insurance legislation. During my time at the University of Dortmund, I then worked very intensively with the federal government on the topic of 'personal budgets'. The idea behind this was not to distribute benefits in kind to people, but to provide cash benefits so that the person could shape his or her own life to a certain extent. Another major change was the idea of separating the integration assistance benefit system, which is intended to provide people with tailored and individualized support, from the social assistance system. This major goal has now been achieved with the new law."
What are the special features of the new Federal Participation Act?
"The cornerstones are the shift in the players. Those who are disadvantaged because of their impairment will now be allowed and expected to hold the steering wheel and make the appropriate lifestyle decisions. That is a significant change. However, these people must at the same time have options to choose something for their lifestyle. The provider program must now change accordingly. The bottom line is that it's a performance triangle. On one side are the service recipients, who now have many more rights and fewer restrictions. On top of that, there are the service providers who help design support services and make offers. And then there's the political side, which is the responsibility of the municipalities through the services of general interest. So at the same time, we have the federal level, the individual formations at the state level, and the individual people who ultimately live their lives where they live."
Isn't working with service providers a bit bureaucratic?
"It's actually highly bureaucratic, which is why the new law also includes a fit that tries to better regulate this interaction between the different actors. Even when the 'personal budget' was designed, it was said that there had to be cross-budget services, otherwise individual negotiations would have to be conducted with each potential provider. Now there is a regulated form in which it is ensured that the individual providers come to an agreement in each case - and also with the persons themselves, who may be provided with an assistant. This negotiation process determines for a certain lifetime, usually one year, how the corresponding disadvantage compensation will be structured."
What impact did the COVID-19 pandemic have on the introduction and implementation of the new law?
"The pandemic had a twofold impact. On the one hand, some things have become even more visible. We were able to deduce from studies that pandemic measures that people had thought about theoretically and also knew about conceptually, were also so armed for people that they could no longer exert any influence on their lives. There was clearly an inequality here compared to the rest of the population. In the end, the health department set the rules and the integration aid was no longer able to act, also in terms of its core business. We must now learn from these processes and become more attentive. Although the accompanying research on the implementation of the Federal Participation Act has made progress and can also specify where improvements need to be made, it has run into a certain delay. That's why there is now an extension of two years, in which it will be systematically looked at what effects this change in the law has had."
One goal of the new law is to improve participation in education. How far along is implementation already?
"Inclusion can be lived in different ways. In terms of the school system, the debates have not gone very happily. In their perception of inclusion, the population only sees the disabled children in school. Yet it is a fundamental rebuilding of how society should be organized. In schools, it is going quite difficult and hesitant, because everyone involved has reservations about this kind of change with a great deal of persistence - except at the points where they see massive advantages. And these benefits are usually resource allocations. For example, an inclusive school gets advantages in class size or equipment. We're dealing more with a very insistent system here, including through curriculum design, that doesn't change just because it suddenly says inclusion. Universities are more flexible here. Compared to schools, they can allow people to achieve at different rates. Course offerings are sort of modular, which makes it easier. The difficulty is that universities per se don't care about individuals and their success. This is also true for people with impairments. But the concern from the system has to be that they are not disadvantaged because of their impairment. This is already being attempted, for example, by extending examination times and producing conditions that are spatially equipped so that speech output can be used. Attempts are being made to improve accessibility by redesigning the building to be appropriately barrier-free. That's how you move toward each other."
How far along is Germany currently in terms of participation?
"Germany has a difficult position overall. The numbers of people who are recognized as disabled worldwide vary extremely. There is no standardized record of who is disabled or who is impaired. Worldwide, the figure is assumed to be around 14 percent, but in fact it is probably around 20 percent. Our program in Germany is called 'dismantle the disadvantage', so do everything to compensate for these disadvantages. The more disadvantages related to impairments are dismantled, the less disability there is. And the less disadvantage there is, the less compensation you have to make. This investment means that by expanding accessibility, costs can be reduced while still providing the same level of fit for the individual. The system would also soon be unsustainable due to growing numbers."
How satisfied are you with the status quo?
"It's heading in the right direction, but there is also a lot of need for change in vocational integration. It's just a patience program. Fortunately, the political parties have understood what is at stake. Nothing about the built realities just changes quickly either. Many services in the area of special housing (which used to be called homes) are also structurally stuck in ways we don't want them to be. The social legislation points conceptually in the right direction, in the social court tested effectiveness we are years behind. Consequently, the legislature will have to develop further on the basis of accumulated experience, and this, too, will take years, during which the processes must first take place. However, science contributes to the acceleration, because it can carry out model tests. In doing so, of course, one observes a reality as it takes place, but it can offer a multi-perspective in consideration, for the legal side, which is not a brakeman in Germany."
Thank you very much for the interview!
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Contact:
Prof. Dr. Elisabeth Wacker
Sociology of Diversity Unit
Georg-Brauchle-Ring 60/62
80992 München
phone: 089 289 24460
e-mail: Elisabeth.Wacker(at)tum.de
Text: Romy Schwaiger
Photo: Astrid Eckert/TUM