Everyone wants to be heard: New Investigation designed to strengthen the Rights of People having a high Requirement for Support in everyday Life

All people are entitled to take part in society to the full, effectively and with equal rights. According to the UN Disability Rights Convention, this also applies to men and women with complex cognitive and/or physical limitations. In a project set up for two years, the Berlin-based Institute for Humanity, Ethics and Science (IMEW) has focused on this heterogeneous body of men, and investigated to what extent the needs of these people in everyday life are being given consideration. In the interview, Dr. Katrin Grüber, Head of the IMEW, talks about the principal findings that have come to light from the investigation, published in May 2021.

What motivated you to conduct this investigation?
Dr. Katrin Grüber: People with a high requirement for support often experience a lack of moral freedom or self-determination. Against this background, we have, firstly, investigated what options the Federal Participation Act, which is explicitly aimed at strengthening the rights of people with a disability, specifically offers, and to what extent individual interests are taken into consideration. In addition, we wanted to find out how this group of people can experience more self-determination and participation in everyday life.

What are, from your perspective, the greatest barriers in everyday life?
Dr. Katrin Grüber: First of all, this group of people with a high requirement for support is scarcely present in either the public perception or within the context of the integration assistance. It is difficult for others to recognize that they, just like everyone else, actually have the natural requirement to participate, express their wishes, or make contact. They want to be heard, and taken seriously. What can, in that respect, be a help is Supported Communication. Regrettably – according to a key observation made in the course of our investigation – this concept is not yet present throughout the relevant communities. If people cannot make themselves understood with words, or only to a limited extent, due to cognitive and/or physical limitations, then this makes it extremely difficult to take part and participate.

How does this form of communication work?
Dr. Katrin Grüber: Besides various forms of sign language, in particular communication boards are used, with uniform pictograms, voice computers or forms of communication close to the body, are used. Obviously, a lot of patience is required on all sides. Sometimes it takes a long time for the right method to be found, which suits the cognitive and motor capabilities of the client. That is labor-intensive, and requires continuing professional development courses and intense involvement with the technical facilities that exist, as well as the specific needs and prerequisites of the individual concerned.

It is not uncommon for employees or relatives to be skeptical, or to hold the view that Supported Communication is not necessary, and that they already know what their counterpart would require. With this attitude, they take away from that person the opportunity to be confident and achieve their communicative aims. It makes a considerable difference if said individual can express himself or herself, and the people around him or her respond. I therefore firmly believe - which conviction is actually corroborated by other investigations - that, with the aid of Supported Communication, a lot more self-determination and participation could be attained. For example, we have described, in the investigation, the story of a 70-year-old gentleman who has been a member of a residential community for many years. He talks a lot, however not in a language which is understood by those around him. The situation changed for him when new staff joined the community and tried sign language communication with him. Within just two weeks he had already learned twelve everyday gestures of sign language, and has, since then, been able to make his basic requirements well understood.

What other obstacles are there in your perception?
Dr. Katrin Grüber: The greatest impediment, the way I see it, is the fact that the people surrounding those lacking communicative confidence think less in terms of opportunities than hurdles. Moreover, the lack of recognition of the rights and needs of people with a high requirement for support is frequently a topic raised for discussion. Everyone needs to be able to evolve, be confident in their communication so as to be heard, and connect socially. The difference lies in people with a high requirement for support needing more assistance – for their entire life. Their achievements are not acknowledged or noticed as such as a matter of course, either. For some it already means a lot to be together with others in a room.

You have explicitly included people with a high requirement for support as part of inclusive events. What was the most impressive experience you gained from this?
Dr. Katrin Grüber: With the concluding events on the project, those with a high requirement for support reported on the options for codetermination at their day-care center or in the area of support and care concerned. To date, there have only been a few such community boards. Those with a high requirement for support previously only actively took part in events in exceptional cases. This example has shown what you can achieve if you consistently pursue a goal. And it makes it clear that technology can provide new opportunities.

What other positive examples of successful self-determination and participation have you noticed, beyond those discussed, as part of the project?
Dr. Katrin Grüber: Through our dialog with experts, our on-site visits and the workshops, we have been able to experience a variety of fine projects. One of them originates from the organization Leben Lernen  in Berlin. It has built a residential building in a community hub right in the middle of Berlin's Weissenberg district. Men and women without any impediments live in some of the apartments, while other apartments accommodate residential communities, which include people with a high requirement for support. Due to the central location, residents can sometimes just go together to the baker’s, or to the movies, quite easily. I have, furthermore, noted the following by taking part in real-life observations in residential communities: Residents are asked for their opinion. For instance, along with staff, they decide where they have breakfast, when, and what they eat for breakfast, or how they would like to organize their leisure time. Regrettably, however, this approach has to date been the exception rather than the rule.

In light of this scenario, what would you like to see implemented going forward?
Dr. Katrin Grüber: Across the board, I would like to see a widespread awareness at all institutions that self-determination, participation and involvement are fundamental rights for all people. Rights that are worth standing up for – so that men and women with a high requirement for support will in future be able to choose from a large range of social services, and, in addition, be enabled to take independent decisions. In this respect, an attentive, appreciative approach on the part of the qualified professionals is essential. Actually, the people exercising managerial functions, who are behind conscious change in the institutions, endorse change, and have to assist staff in their efforts, also play a key role. In addition, I would like to see more projects implemented at local community level, enabling eye-to-eye, low-threshold meetups in the public sphere. From funding agencies and federal states, I, primarily, expect a higher degree of awareness of the individuality of all people with disabilities. The Federal Participation Act provides a number of starting points for that.

The “Self-Determination and Participation in Everyday Life of People with a High Requirement for Support” project was not only funded by Software AG Foundation, but by Lauenstein Foundation, Kämpgen Foundation and Aktion Mensch as well. The results of the investigation are summarized in two publications: The consultation paperis primarily aimed at funding agencies, relevant departments at state level and regional associations. For qualified staff working in forms of communal living and organizations that provide integration assistance, as well as people with disabilities and their relatives, separate brochures are available. The respective documents are available in simplified language, too, and can be downloaded at www.imew.de. Printed copies can be requested, free of charge, by emailing info(at)imew.de.