The New Idea
Walburga and Klaus create equal opportunities for people with severe learning difficulties. They seek to fundamentally transform the way in which government and private agencies engage and serve people with severe learning difficulties, and in so doing transform how society perceives their capacities and potential. At the core of their strategy is enabling people with severe learning difficulties to assume leadership roles in defining the accessibility of the environment in which they live and the quality and type of care which they receive.
Traditionally, those suffering from severe learning difficulties have not been included in defining or developing the services they receive. This led to a fundamental and chronic mismatch of services provided. Indeed, people with severe learning difficulties are often left in a state of dependence on state care or trapped in inactivity, severely limiting their ability to reach their full-potential. According to Walburga and Klaus, the institutional-care system for people with severe learning difficulties ought to respond to the needs, perspectives, and interest of those it was designed to serve.
Walburga and Klaus' vision is to make a U-Turn in the prevailing, top-down system for the people with severe learning difficulties by empowering them to control and decide about their own lives. People with severe learning difficulties regain their voice. They become access to crucial information that allows them to take their own choices, and thus, live a self-determined life. They are equipped with tools to evaluate, decide and control the services they receive as well as to assess and address the barriers with which they have to cope in mainstream society. This includes gaining full influence on the facilities where they are cared, choosing in- or out-patient settings, leaving the system and living on their own, and finally, tearing down the multiple barriers that surround them in mainstream society. Walburga and Klaus are creating a bottom-up community of peer-to-peer support and influence, so that gradually more ex-clients of full-day care support services are becoming mutual experts for their peers. People with severe learning difficulties become the experts that drive institutional change and barrier-free landscapes. This vision is being carried out both in particular institutional settings, as well as influencing the system on the province and national levels, replacing the old, traditional, disempowering structures by the novel peer-to-peer approach.
According to the European Commission, one percent of the population has permanent learning difficulties. In Austria and Germany, 20-30 percent receive full day-care support in the form of either assisted living (sheltered housing) or assisted working (sheltered working). This means that the life-style of every fifth person with learning difficulties is fully dependent on social services, the provision of which often can span the course of a lifetime. Even those not in full-time assisted living or working environments are also dependent (if not as heavily) on social services provided by the state. According to experts, twenty percent of people with learning difficulties who receive institutionalized services in Austria could potentially live and work right now on their own and therefore immediately exit the institutionalized day-care support system. Another thirty percent could move from institutional care to assisted living in the mid-term through a supported transitional phase.
Society perceives individuals with severe learning difficulties as incapable of providing reasoned opinions on their own needs or their interests. They are largely considered passive service recipients. If at all, only close relatives are asked for feedback on the quality of services received. In the rare case that people with learning difficulties who receive institutionalized services are asked directly, they are asked by non-disabled experts and only regarding their subjective satisfaction; their user-based expertise is not acknowledged nor taken advantage of. Typically, the individual satisfaction surveys sent out are not useful in assessing the output and outcome levels of the services provided, nor do they enable qualitative benchmarking of service institutions due to the absence of measureable criteria and transparency. This means that people with severe learning difficulties receive care which does not correspond to their real needs. Still the majority of people with severe learning difficulties are put in institutional care. In the most extreme cases, they are hospitalized in psychiatric institutions that neglect their basic human rights.
A prerequisite for people with severe learning disabilities to move freely in society is that they understand the language and narrative codes of the society they are moving in. But this is not only true for them. Based on the Common European Framework of Reference for Language, 40 percent of the total European population has a reading and writing competence of A2, which means they are only able to read and understand simple texts. However, 70 percent of public administrations and companies communicate on level C1. Hence, almost half of the European population barely understands important everyday information and cannot fully participate in society. This lack off appropriate educational training (functional illiteracy) and access to information negatively impacts 30 Million people in Austria and Germany alone.
In 2006, the United Nations adopted the “Convention on the Rights of Persons with Disabilities and its Optional Protocol”, consequently ratified by Austria in 2008. The convention states that people with disabilities should have the freedom to make their own choices, as well as the opportunity to be actively involved in decision-making processes about policies, programs, and mechanisms including those directly concerning them. To date, there has been no systematic feedback loop to aggregate, analyze and communicate the end-user experience in the reform process for institutional care systems. In addition, multiple barriers still prevent people with disabilities and other vulnerable groups to realize full citizenship in mainstream society.
Walburga and Klaus have a dream that all people with disabilities and difficulties can live a self-determined life. The first step is to create a care system that evolves out of the participation of its users, the disabled people themselves, by enabling them to voice their needs, to actively contribute to change existing practices, and to choose the way they want to live. Walburga and Klaus train people with severe learning difficulties to become the experts that assess and evaluate the full day-care support services provided by institutions in the form of either assisted living (sheltered housing) or assisted working (sheltered working). People with severe learning difficulties are trained and employed as evaluators of and change managers in care institutions. They learn how to develop quality criteria, lead interviews and analyze the data received. Most importantly, these evaluators come with the invaluable experience of having lived and worked in sheltered and fully-assisted care institutions. The evaluators develop the quality criteria together with the users, i.e. patients, of care institutions, undertake the interviews, and present the results. They train users of care institutions to become quality managers within their own institutions, in order to lead the change management process.
This peer to peer encounter on eye-level is a transformative and empowering experience. The evaluators feel competent, needed, self-confident, and as part of a larger movement to change the lives of others who share their learning difficulties. They take their job satisfaction from the fact that they empower people with severe learning disabilities to articulate their own needs, and of holding a real job that allows them access to income and a more independent lifestyle. They act as role models for their peers (the interviewees, i.e. users), who change perspectives, acquire confidence, and develop new ideas about how they really want to live their lives and what options they have. The disabled inhabitants are empowered to collaboratively define the institutional quality-bar and to assess the status-quo performance of the institution. If there is a discrepancy, change is needed.
This enables the next level of empowerment. Either the institution changes or the people change the institution. The former requires that selected disabled inhabitants of institutions are trained to become change managers. Change managers are hired by these institutions, team up with the care personnel, and together they manage the transition process to improve the quality of the services provided. The disabled change manager is the broker between the “abled” management and the “disabled” users, and guarantees that the user’s perspective forms and renews the institution.
Walburga and Klaus developed an online platform that makes all evaluation results public. Individuals with learning difficulties, their relatives, service providers, public institutions, and experts can compare the results and choose the best places and practices. This created transparent public access to user-based information about service institutions for people with severe learning difficulties in the world. It is a tremendous incentive for service providers to take the evaluation results seriously and to improve and further develop their services. Service providers need to change their practices if they don´t want to lose their reputation, funding and ultimately, their clients. The online platform displays currently 658 evaluated and comparable service suppliers. The State of Styria has already adopted their model to reshape its institutional care-system for people with severe intellectual difficulties. Other States in Austria and Germany are now following this example and initiate legal and policy changes to adopt the model or specific elements of it, such as the Austrian States of Upper Austria and Tirol, or the German State of Berlin and Hamburg.
Through this model, Walburga and Klaus help service suppliers to improve their services, public institutions to design responsive policies and support measures, while allocating public funds more efficiently and enabling a self-determined life for people with severe learning difficulties. It is a unique mechanism that allows people with severe learning difficulties to shape and transform the institutional care system according to their needs and perspectives, with the ultimate goal to life a free life in mainstream society.
The evaluation and change process triggered by Walburga and Klaus reveal the full spectrum of existing care opportunities to the disabled people, i.e. non-institutionalized, part-time care. Many disabled people do not only choose to change the institution, but regain their confidence and abilities to leave – or develop the wish to leave – the institutionalized care system at all. This at the same time increases the demand for the – comparatively cheaper – non institutionalized part time support system. The evaluation results and assessments done are used by Walburga and Klaus to demonstrate decision makers that institutionalized care systems need to be fundamentally reformed, and that people with severe learning difficulties would exit institutions through an enabled ability to choose how they want to live. They promote that a non-institutionalized care system needs to be actively built that is, above all, based on the active participation of the disabled themselves, and guarantees a free live in mainstream society.
Therefore Walburga and Klaus organize conferences and workshops that promote disabled people as experts to transform the old care system, which instills trust and confidence in both, the disabled and non-disabled expert audience that such a bottom-up change process is possible.
The power of Walburga’s and Klaus´ work really unfolds when whole federal states or regions adopt their approach. When this happens, more and more disabled people start to decide to leave the institutional care system. This automatically increases the demand for more non-institutionalized, part-time, care options. And the more people with disabilities live outside of institutions, the more it is an implicit necessity to tear down the walls and barriers in mainstream society for people with disabilities. That is why their approach becomes a deeply transformational process when densified into geographical regions. Firstly, they trigger change in institutions and mindsets so that the traditional care-infrastructure transforms according to the needs of people with disabilities and as a consequence, more and more people with disabilities exit the institutionalized care system; Secondly, they create enabling, responsive and barrier-free landscapes for people with disabilities that enable quality of life in mainstream society.
Walburga and Klaus work with entire regions to become barrier-free and accessible. In these regions, Walburga and Klaus work with municipalities, citizen groups, and businesses to develop common barrier-free visions for entire regions, status-quo assessments, and roadmaps for change. The change process is monitored over time, and a certification system awards successes. The regions themselves are networked in a wider national and international network, where they can share their experiences. The disabled people themselves are once again participating in these reforms actively as experts, and their feedbacks and perspectives are shaping the regional reform initiatives. Regional actors are incentivized by the fact that approx. 10% of the population has a severe disability, and that this trend will further grow in the coming years through an aging population. This constitutes a large but neglected costumer group and purchasing power for the regional economy. Thus, these regional barrier-free initiatives are often spearheaded by the municipal tourism, economic development agencies and the local business community.
In addition, Walburga and Klaus raise the awareness of businesses and public authorities that the corporate and public information they produce and disseminate - ranging from legal texts, to digital media on workplace safety, questionnaires, website-texts, and many others - need to be translated in easy language to be understood by the majority of the people in society. According to research, 40 percent of the European population suffers from functional illiteracy, excluding hundreds of thousands of Austrians from daily routines, or at least, complicating their lives tremendously. In order to tear down these informational barriers, Walburga and Klaus work with businesses and public authorities to change their language, and ultimately, to change the narrative code of mainstream society that excludes a large part of its population through setting unwillingly informational barriers. Walburga and Klaus train people with learning disabilities to become proofreaders who assess whether information is barrier free and easy to understand.
Walburga and Klaus spread their ideas and initiatives through an award-winning social franchise system. The ultimate goal of the social franchise system is to create jobs for people with learning disabilities, while creating a more inclusive society at large. The social franchise system offered a smart mechanism to codify their practices in a simple way that other organizations can take them up and replicate. It creates a network of practitioners that share experiences and further develop the offered services. Above all, it creates regional, national and international infrastructure for the design of care systems and barrier free environments that is driven by the disabled people themselves. The growing network becomes a powerful bottom-up reform movement, a hub that promotes and lobbies for substantial reforms in the public spheres. It does not only lobby for abstract reforms designed by ordinary experts but develops and articulates the alternatives from the perspective of the grassroots and the disabled people themselves.
Walburga and Klaus stand at the cross-roads to a large up-take of their ideas. Having struggled over 10 years to pioneer these new perspectives into the traditional system, and finding ways to make these approaches replicable by other practioners, they now experience a smooth tailwind. The network has grown, the results have proven the concept, and a new care system in in the making spurred by legal reforms implemented in several states across Austria and Germany. Also the UN Declaration on the Rights of People with Disabilities, adopted in the recent years by Governments across Europe, finally officially acknowledged their pathway of reform. The traditional cultural resistance experienced in the last years is getting less strong. Walburga and Klaus aim is to spread the network across Europe in the first place. It will become the intellectual and practical infrastructure of a bottom-up and disability driven reform process, that will change the institutional landscape according to the needs and perspectives of the disabled people themselves across Europe, while creating barrier-free landscapes, that enable everybody with any kind of “disability” to move and live freely in mainstream society.
Furthermore, Walburga and Klaus have plans to expand their work to other sectors, institutional settings and target groups. The natural next step is adjust their work for seniors and hospitalized patients, in the context of nursing homes, hospitals and rehabilitation centers. Beyond these fields, Walburga and Klaus aim to test their model in the context of prisons and migrant reception and detention centers. The idea is the same as for people with severe learning difficulties, i.e. to empower the users to influence the quality of services they receive, to enable transparent public access to user-based information about service institutions, and to nurture a bottom-up reform movement.
Person – Walburga
Walburga grew up in rural Styria as the firstborn of an enterprising couple who pioneered sustainable farming practices. Her deaf uncle lived and worked with them on the farm as an equal, an experience and interaction that was central in Walburga developing a strong sensitivity for the rights of people with disabilities to live fully included in society. At the age of seventeen, a summer job allowed Walburga to work in an institution for people with disabilities in Switzerland, an opportunity that changed her career aspiration from chemistry to social work. She subsequently spent the next years´ summer holiday working for this institution.
After her studies in social work and management, Walburga started to work for one of the largest Austrian disability organization (called Lebenshilfe), where she launched a counseling and service center for families with disabled children. She identified that the core challenge for families was recognizing the opportunity for both their children and themselves to live a fully engaged life, as her family and uncle had. Her center’s work motivated the young parents with disabled children to enjoy their life in the middle of mainstream society.
Later, while on maternity leave, Walburga was unsatisfied with the quality of kindergartens in her neighborhood. She solved the problem by starting a new one, which was elected as Austria’s best kindergarten in short time. At the same time, Walburga earned a degree in “Integrative Supervision and Organizational Development” and started to supervise several entrepreneurs and teams—among others Klaus Candussi, founder of the organization Alpha Nova which aimed to de-institutionalize a unit at the youth psychiatric hospital of Graz that treated youth with severe learning difficulties.
Returning from maternity leave, Walburga began working with Alpha Nova, where she developed its social services branch contributing to the programmatic sustainability of the organization by transforming the learnings and developing expertise of the de-institutionalization process into an a solid range of service offers. Within the branch, Walburga established a pioneering counseling center with a focus on sexuality and adult identity, which became the central source for information on this topic in Austria.
Her work in the counseling center gave her deep insights into the desires of people with disabilities and opened her eyes to their dissatisfaction with the services offered—even by innovative providers such as Alpha Nova. Intensive discussions with Klaus, Alpha Nova’s CEO, led them to the conclusion that a totally different approach towards the design of services was needed. This ultimately let them to establish Atempo together.
The Person – Klaus
Growing up as one of five children in a family living under modest financial conditions, Klaus learned quickly that achieving higher goals or wishes needed special personal initiative. Klaus was elected into the role of student representative at both school and university. After obtaining a master’s degree in musicology, he did civil service at the disability organization Lebenshilfe, where his interest in disability and wider social issues was first sparked.
Klaus started as a regional manager of Lebenshilfe to reorganize and professionalize the organization. He also founded a profitable newspaper for Lebenshilfe, which became its central tool for communication on disability issues. At Lebenshilfe, Klaus and Walburga met for the first time. An avid journalist — as both a passion and as a sideline pursuit with which he was engaged — Klaus became involved in the fight against the systemic maltreatment of disabled juveniles in the psychiatric clinic in Graz in the early 1990s. His investigative articles helped to bring the topic into the public sphere. As the Styrian government failed in finding solutions to dissolve the “Gulag,” as the psychiatric department was named in an official medical assessment, Klaus identified an ally in a former judge with an interest in the issue, and while still a young man co-founded Alpha Nova to take over the juveniles department from the clinic, close it down, and establish alternative living and working facilities for the former patients. Executive Director Klaus recruited Walburga on board to set up the social service branch of Alpha Nova.
As Alpha Nova quickly became a large and complex service provider, Klaus recognized the need for further University credentials. While maintaining his responsibilities with Alpha Nova, he enrolled and later graduated with a degree in Social Management from the University of Economics in Vienna.
Although the management and the functional work at Alpha Nova were setting standards for the field in community integrated services for people with disabilities, Walburga helped Klaus to realize that this existing setting would never lead to fundamental transformation of the quality of life for the users that they aimed to enable. Opposite to mainstream thinking at that time, the two were inspired by the Anglo-Saxon human rights approach to disabilities, rather than the Scandinavian welfare state model. Faced with the ideas of the self-advocates movement of people with learning difficulties and disabilities, Walburga and Klaus decided to launch a new institution - Atempo - as the place where the intended change towards valued roles in society and inclusive cooperation between people with and without disabilities could practically happen.