Eötvös Loránd University Faculty of Education and Psychology
Doctoral School of Education
Thesis of Doctoral (PhD) Dissertation
Anikó Sándor
Self-determination opportunities of persons with high support needs
Supervisor: Dr. György Könczei, DSc, dr. habil. university teacher
Budapest, 2018
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1. INTRODUCTION, RELEVANCE AND DISCIPLINARY CONTEXT
1.1. Introduction
Based on the theoretical framework of Disability Studies, the dissertation presents the characteristics of self-determination of persons with high support needs in different types of living arrangements in Hungary. The research design is based on a qualitative and participatory approach (according to this, the texts was consciously formulated in first person plural).
The key starting point is that Hungary ratified the UN Convention on the Rights of Persons with Disabilities in 2007 (hereafter referred to as CRPD). The CRPD states that States Parties shall recognize the importance of individual autonomy, independence and choice-making [in particular: Preamble n), Article 3, Article 12].
Article 12 of the CRPD on Equal recognition before the law can only be interpreted in the light of Article 19 on Living independently and being included in the community.
Gerard Quinn interprets Article 19 as a window to Article 12 and Article 12 as an anchor of Article 19 (Quinn, 2013), so we conducted the research in the context of different living arrangements. Instead of independence, self-reliance or self-sufficiency, self- determination as a social and cultural concept can be a framework that is suitable for approaching the life situations of people with high support needs. Self-determination means that an individual determines when, how and with whom he or she wants to be involved in life, thus exercising control over his life events. This is a simple, but at the same time, a very complex question. Classical interpretations refer to self-determination as a fundamental human right, as a set of specific behaviors, and as goals of specific behaviors (Wehmeyer, 1999). All three approaches simplify the phenomenon and ignore the characteristics of the group we are investigating.
Persons with high support needs can be characterized as the most neglected and vulnerable group of people with disabilities. During the course of history, they were first people who needed nursing, but did not need education. Then they became lives unworthy of life, whose killing is not punishable because they cannot be considered as human beings (Evans, 2010). Later on, they became „trainable” and joined the educational system in Western societies, but, in reality, they are still the ones who are often denied the services they need. It can be noticed that nowadays, society exclude them through the system of disability support services (Fornefeld, 2008, Dederich, 2008).
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1.2. Relevance
We agree with Theo Klauß that by the examination of the self-determination of persons with high support needs, we do not follow social-romantic considerations (Klauß, 2005a). Persons with high support needs experience oppression, such as marginalization, powerlessness and violence in their everyday life (Young, 1990). Therefore, when we talk about them, at the same time we raise the question of lower support needs, age, childhood, illness, ethnic groups and solidarity, that are fundamental issues affecting each and every member of society.
Persons with high support needs expose elements of self-determination that would otherwise be hidden as we automatically fulfill the expectations that society latently imposes on us.
It is a well-known principle that persons with high support needs are able to express themselves, they can communicate with their environment and they can have an impact on people who are in contact with them. There are few qualitative studies available to reveal the possibility of interpreting self-determination, the types of restrictive and supporting factors that may arise in practice, and the relationship between self-determination and the quality of life, communication, and challenging behaviors (Klauß, 2005b). There is therefore a need for research that considers self-determination from the perspectives of the individual person and his family, considering cultural approaches for diversity, and that also involves important assistants of the family and their experiences (Hagen, 2007). Although we have a relatively wide pool of theoretical concepts of self-determination, we do not know how these concepts can be used during field work, especially in the case of high support needs (Bambara, Cole and Koger 1998). Therefore, the presented research can be considered as an innovative work that tries to fill this gap.
People with intellectual disability who are capable of self-reporting consider their self-determination to be significantly more important than their parents and teachers, while these assistants believe that the question of self-determination is irrelevant in the lives of persons with such disabilities (Wehmeyer, Agran and Hughes, 2000; Schalock et al. 2005, Martin, Woods, Sylvester and Gardner, 2005). As Wehmeyer suggests, this idea can be derived from a misinterpretation of the construct of self-determination (Wehmeyer, 2005), and it is believed that the misinterpretations originate from the assistants’ concepts of human, their understanding of what disability is, and their interpretation of their own role (Weingärtner, 2009, Theunissen, 2012, Emerson, Hasting and McGill, 1994; Hellzen, Asplund, Sandman and Norberg, 2004; Bigby, Clement, Mansell and Beadle-Brown, 2009;
Walker et al., 2011). We try to deconstruct the phenomenon called neoliberal ideal of
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„human” and present the characteristics of a postmodern approach that reflects on the needs of the group.
The discrepancy explained above, underlines the importance of the deconstruction of power relations between people with disabilities and their assistants. An important starting point is that disabled persons are more likely to be objects rather than subjects of researches’
investigations. They do not feel like active participants, which in turn further reconstructs their disabilities (Barton, 2005).
The novel approach of our research focuses solely on adults and renders self- determination not only as an analysed dimension, but focuses explicitly on the possibilities and obstacles of support in self-determination. The topic is relevant because tens of thousands of persons are involved, who in general face numerous disadvantages in their everyday lives.
There have been some case studies in Hungary that focused on this issue (Galambos, Papp and Verdes, 2003), and the self-determination paradigm has been a part of scholarly discourse since the 1990s (Zászkaliczky, 1998). It is well known that the people living in institutions are under guardianship and face significant limitations in autonomous decision making (Kozma, 2008, Verdes, 2009). However, in the first decade of the 2000s, Hungarian empirical research on the quality of life of the group was based more on a quantitative approach, and examined the life situation of families and the services available to them. It has been shown that families who raise children with high support needs, cannot maintain their former social and economic status, and they live in poverty and have a lack of social networks. Their quality of life, and their ability to cater to support needs, is significantly influenced by the region in which they live (Bass, 2004). The access to complex, interconnected, need-oriented and individualized services is essential and significantly determines the living conditions of persons with disabilites and their families (Márkus, 2005). Bass and Márkus have pointed out that due to the above factors the families do not have enough resources, which would allow for self- determination and advocacy, so it is necessary to explore the deeper layers of these issues through qualitative research.
1.3. Disciplinary context
Our study is based on the theoretical findings of Disability Studies and Critical Disability Studies. It explores how the central concept of self-determination can be understood in the case of people with high support needs and reveals the possibilities for adult persons with high support needs living in different living arrangements in our country.
5 In Hungary, for the first time, we are responding to the critique that the above mentioned disciplines can only represent persons with disabilities that are highly talented (Zászkaliczky, 2014) because we are convinced that the inclusion of the group of persons with high support needs is also possible and necessary in Disability Studies. From a historical and cultural point of view, we analyse how the advocatory role can be in line with the core principles of Disability Studies. In our literature summary, we also include other areas of expertise related to disability, for example the sources of special education or sociology.
Our work requires disciplinary and thematic delineations. We do not examine the theory and practice of the education of persons with high support needs, and this approach is not represented in the empirical part either. However, in the analysis of the concept of the human being we integrate the knlowledge of the pedagogy regarding persons with profound intellectual and multiple disabilities. The dissertation does not elaborate on the theoretical and empirical results of the psychological approach of self-determination. We just briefly refer to the legal framework of self-determination, and we do not present the significant set of problems associated with guardianship and supported decision-making. The topic of self- determination and autonomy also has a strong philosophical background, the analysis of which would exceed the frameworks and competences of this work, so it is only briefly referred to in the historical context.
Thematic delineation is also needed in connection with living arrangements:
although these inform the analysis, the complex process of deinstitutionalisation is not discussed in full detail. We briefly refer to the experience of the characteristics of institutional culture in small and large institutions, and draw attention to the lack of real alternatives, underlining the need of deinstitutionalisation in Hungary
The German, English and Hungarian literature available on the subject is fully explored. We introduce new concepts and interpretations into the Hungarian discourse, in order to expand the group’s opportunities for participation.
The findings described in this dissertation will be turned into different types of publications. For assistants, we prepare a professional guide in plain language which will help them to assist in everyday situations regarding self-determination. For people with high support needs, it is difficult to directly disclose research findings, even through augmentative and alternative communication, so they can be reached through their assistants. An easy-to- understand version will also be prepared, which will be shared on the platforms of self- advocacy groups.
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2. AIMS, RESEARCH QUESTIONS AND ASSUMPTIONS
2.1. Aims
Our goals are multi-directional. The study does not only reveal the life situations of the group, but also intends to make an impact through the praxis and results of the research . By doing this, we are trying get closer to the opportunities and obstacles of self-determination of persons with high support needs in our country today, which can contribute to the development of the services provided to them, thereby improving their quality of life.
Examining and visualizing oppressive power mechanisms and structures can enhance the group's empowerment and support the work of advocacy. Sharing the experience of a tried and tested development process can provide practical help for assistants to perform their care work more efficiently. To that end, assistants will be provided with a methodological guide written in plain language.
The detailed documentation of the research process further provides support to those who want to collaborate with persons with high support needs in their research. We hope that these aims together meet the ambition of the research to strengthen the members of the group with its results and avoid becoming just another example of professional oppression (Barnes, 1996).
2.2. Research questions and assumptions
The main research question is: what kind of support is available today for persons with high support needs in Hungary to ensure self-determination in different areas of life, that are relevant to them?
Further questions:
A) Question: How do assistants support persons with high support needs in their self- determination?
a) Hypothesis: It is possible to support persons with high support needs in their self- determination.
B) Question: What are the characteristics of self-determination of persons with high support needs in different living arrangements?
7 b) Hypothesis: The living arrangements affect the kind of support of the self-determination of persons with high support needs.
C) Question: What characterizes the assistants’ notion of what a human is and how do they interprete their own role?
c) Hypothesis: The assistants’ concept of human and the interpretation of their own role has a profound impact on the possibilities of self-determination of persons with high support needs.
D) Question: How can the community of a group home be supported to extend options for self-determination for persons with high support needs?
d) Hypothesis: In extending options for self-determination of persons with high support need, it is important for a community of a group home to recognise those areas that are meaningful for the self-determination of people in their care.
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3. METHODOLOGICAL BACKGROUND, METHODS AND ETHICAL CONSIDERATIONS
3.1. Methodological background
Investigating self-determination is a major challenge in the case of people with high support needs. On the one hand, it can be questioned, if self-determination is a measureable phenomenon (Haeberlin, 1996). On the other hand, the use of self-report-based indicators is not possible (Wehmeyer, 2005; Seifert, 2006). Thus, we applied a qualitative approach suitable for involving persons who typically communicated nonverbally, and we supplemented that information with the views of their trusted assistants. The Grounded Theory approach had the most important impact on our research. This approach primarily aims at shading and developing theoretical concepts. The analysis of the theories, the collection of data and the processing of empirical data is not linear but an interpersonal, a reflexive and a circular process. Consequently, the emergence of theory is not the endpoint of the research process, but rather, it develops, expands and changes from the first version of research design (Glaser and Strauss, 2006, Corbin and Strauss, 2015).
We conducted participant observations in the qualitative paradigm, as well as focus groups and individual interviews, and prepared minutes and transcripts. The transcriptions were analyzed using the Mayring qualitative content analysis technique (Mayring 2015;
Mayring and Gläser-Zikuda, 2008).
Our work is based on the participatory paradigm, with the aim to learn about the possibilities and limitations of inclusive research with persons with high support needs.
Participation could be realised in small elements of the research process, mainly through an advocatory role. In the research, a person with high support needs, Richárd Zachareszku, took part from the planning to the analysis of the four-year research period. We met three to four times a month, and through our relationship, he influenced all observation situations and interviews.
The whole process of the research was accompanied by a reflective research diary, which included all relevant events, research reflection and self-reflection. The research diary is a tool of qualitative field research and disability research, which can support the analysis of the research process (Weigand, 2009; Friebertshäuser and Panagiotopoulou, 1997; Barnes, 1992). It is created for a specific purpose and it is written from the beginning of the process to the end, so it is about a limited period of time. Out of all the available genres, we used the free, non-standardized form, given that the terrain and the subject were not known at all
9 (Fischer and Bosse, 1997). It is a tool to increase the quality of qualitative research, as it provides an opportunity for the process to be transparent, reconstructed and reproducible. It also allows the researcher to reflect on the methods used and the changes needed, which was one of the key moments of this research.
The sample selection did not aspire to be representative, but rather, it wanted to ensure that the typical life situations of persons with high support needs are represented: one group lives in a small or large residential institution (in a group home or a residential home or with more than 10-12 persons), the other group members live with their families (parents or siblings). In addition to the disabled persons, we also addressed close support persons (relatives, caregivers, educators, etc.) who did not only represent their own positions, but also tried to give a substitute response (Helmkamp 2003) during the interviews. After weighing the results of the literature review, we did not use diagnostic tools based on the support needs and did not use available medical, special educational and psychological diagnoses. Following Beamer and Brookes and Seifert's sample selection criteria, we added our own criteria and worked with persons with high support needs, who:
do not speak or speech is not their primary communication channel,
live with intellectual disabilities, which in many cases are associated with physical disability or illnesses,
have other labels such as „problematic behavior”
require intensive support in their daily lives in all areas (Beamer and Brookes, 2001;
Seifert, 2006); and
they are considered to belong to the group according to their environment.
3.2. Methods
In the first phase of the research, which lasted from January 2014 to June 2015, we included two group homes belonging to the same NGO. The selection was based on nonprobability sampling. We chose institutions where people with high support needs lived.
The observation directly involved 7 persons living in the group homes. We conducted semi-structured interviews with 6 of their relatives or guardians. The support staff in the group homes participated in focus group interviews. Semi-structured interviews and focus groups were recorded at the beginning and at the end of the process, and the observations took place in the middle and at the end of the process. During the process, some of the participants died and some of them left their workplace, making it difficult to pinpoint the exact sample of this research phase. However, this was considered a feature of the field
10 and was supported by the continuous reconsideration of the methods used. The research design also included the participation in the team meetings and an internal, Disability Studies- based employee training organized at the end of the process.
The interviewees involved in the second phase of the research were mainly reached through institutions. We did not differentiate between the employees of the institutions in terms of their qualifications, but we included professionals and untrained persons as well, who perform some kind of occupational support, nursing or who serve as heads of these institutions. Interviews were conducted in small group homes providing services for 10-12 persons and supported living providers (5 interviews) and the staff of residential institutions providing services for 12 to 200 people (17 interviews). In the larger facilities, colleagues who worked for a long time together, sometimes collaborated spontaneously with each other, and in accordance with the qualitative paradigm, we supported these dyadic interviews. In the 17 interviews, thus, we involved 19 interviewees. The gender ratio is determined by the field: at this stage, there was one male interviewee who had a leading position in one of the large residential intstitutions.
Besides the interviews with the staff, interviews were also made with relatives. We reached the persons still living with their families through the day-care system. With this technique, families who did not use services could not have access to this study. 6 interviews were conducted with parents or siblings of persons who live in their families of origin and 6 interviews were conducted with family members whose adult relatives are already living in one of the institutions.
The interviewees, also taking into account day-care services, were connected to 8 different institutions, some of which belong to a common service provider. One of the group homes was created specifically for persons with high support needs within the large institution itself. Some of the living arrangements operate in large cities, others operate in small towns or villages. To ensure that institutions and participants remain anonymous, we do not disclose any specific information about the size or location of the facilities. Additionally, such information is not relevant for the research question.
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4. RESULTS AND CONCLUSIONS
4.1. Results
Our study has shown that some elements of self-determination can be observed in the case of people with high support needs and in all forms of living arrangement. These elements are typically part of the everyday routine, and are connected to fulfilling basic human needs.
It is extremely difficult for participants in the research to translate the meaning of self-determinatin into concrete situations. The concept is used actively and consciously by very few people, so it has little influence on the support activity as well. Our theoretical work revealed that self-determination is an abstract phenomenonthat is very difficult to define. In our inquiry, we quickly got to questions and contexts that address the fundamental questions of human existence. Without the deconstruction of the notion of „human being”, the status of people, normality and disability, the deeper exploration of the phenomenon is not possible.
This partly explains the insecurity of the interviewees. Especially in the case of parents and the staff of smaller institutions, we have experienced the previous reflection of these issues, which enabled a more subtle discussion of practical implementation. In our work, we did not venture into a deeper examination as to how the interpretation and experience of self- determination relates to the legal consciousness of the participants. We assume that in the Hungarian context, there are cultural, social, political and economic considerations, which do not allow the concept of, the need for and right to self-determination to befilled with any meaningful content.
The misinterpretation of self-determination is the key obstacle in the process of support. Self-reliance, decision-making, self-adcocacy are aims that can hardly be interpreted in the case of persons with high support needs. That is why assistants think that self- determination is unavailable to this group and is not a relevant and meaningful principle. This supports the practical relevance of the difficulties discovered by Wehmeyer et al., and points out that the phenomenon has cross-cultural features that are presumably linked to the dominant image of what „human” is.
All sections of the research confirmed that for persons with high support needs the self-reliance and possibility of choices in eating, listening to music and playing are the most important areas of self-determination. It affirms the theory of basal self-determination (Weingärtner, 2009) that these areas are linked to the everyday, most basic human experiences and provide opportunities for creating choice-making situations. Although at
12 different levels, but in all types of living arrangements, these situations have emerged, or at least they were not hindered. The latter addition is important because effective support could only be provided if the creation and strengthening of these situations were the result of conscious, coordinated professional activity. However, the persons with disabilities have little or no opportunity to experience their own influence and to experience the consequences of their activities.
It is worrying that assistants strongly limit their understanding of needs into these few basal areas, and they hardly mention the importance of communication, emotional security, and relationships with relatives and friends. One of the most important human needs, the opportunity to care for others, appeared only in the family context as a need and as an opportunity for people with high support needs. Only in the context of group homes and supported living services, was the need for augmentative and alternative communication and the support of it observed, even though this would be the starting point for expressing and interpreting needs. Due to the lack of direct self-reporting, subjectively important and meaningful areas should therefore be regarded as interpretations, while retaining the possibility that these can be significantly influenced by what the community understands as
„human”, and how assistants interpret ther own role as assistants.
The practice of promoting self-determination is clearly influenced by the level of support needs. Most assistants say there is a kind of „border” in the field of communication and intellectual skills beyond which the concept of self-determination cannot be interpreted.
Persons with lower support needs have broader self-determination options in every kind of living arrangement. Differences are reinforced by a variety of routines, such as categorisations and different labels for different support needs.
Persons who can not move are more likely to experience their vulnerability because physical barriers require their support to involve more resources. In that sense, they have less chance of self-determination. At the same time, with the lower level of self-determination, they are those who experience fewer restrictions because they can not actively cause situations that are considered to be disturbing. In our analysis, we have come to the conclusion that this relationship may be subject to further research in the future, as it may help to develop alternatives to restrictive measures and relieve assistants.
However, the level of support needs is not the only influencing factor. Self- determination is created in the dynamic interactions between the individual and the assistants. It is determined by the subjective significance and the desired level of self determination, and the possibility of exercising it.
13 Assistants, regardless of whether they are family members or paid assistants, are involved in systemic oppressive power mechanisms. Persons with high support needs and their assistants are experiencing serious constraints in their everyday lives and do not have a voice in organizing and managing services. This confirms earlier research experiences that the autonomy of assistants is related to the self-determination of persons with disabilities.
Assistants are therefore less supportive of self-determination efforts. They prefer protection and continuous supervision and control over the activities of persons with disabilities.
4.2. Conclusions
We can conclude that it is the larger institutions are most likely to be characterized by the emphasis on the infant-status of adults with high support needs and the use of the very serious restrictive measures resulting from this attitude. Four groups were defined based ont he observed restrictions, which are located along an interval. On one end of this continuum, there are severe physical restrictions, while on the other, there are useful, constructive social expectations. Small institutions and families are more prone to construct these positively- assessed, constructive expectations that are in accordance with our culture. In all arrangements, however, it is difficult to maintain a balance between the self-dtermination and restrictions on behalf of physical needs and emergency situations.
However, in this study, we cannot support the assumption that the restriction would be strongest in the family of origin, in the presence of parents or siblings. In this context, the social interpretation of self-determination and the importance of participation are the most common values. Families live together, mainly because of the lack of acceptable alternatives and the operational anomalies of existing services, not because they want to limit their children. However, it can be seen that even families, which support higher levels of empowerment find it difficult to organize social participation, programs, and they live more or less isolated. From this point of view, larger institutions are in a better position because they can use more resources to mobilize disabled people. However, persons with the highest support needs, especially those using tubes or wheelchairs, are often excluded from these recreational opportunities.
Types of living arrangements clearly influence how hierarchy develops and and at the same time, the risk of power abuse in certain situations is inevitable. Experience confirms that this phenomenon is most noticeable in large institutions. In organizations where the number of employees sometimes exceeds 100 people, it is inevitable that this will develop and this will make it impossible to provide support for self-determination. Although small service
14 providers (group homes and supported living) have been treated as one category, it can be observed that there is a difference between their operations. The most direct contact between the persons with disabilites, the workers and the relatives could be found in the non- governmental organizations providing supported living. Members of these communities, who are not connected to other units of the service provider, meet, communicate with each other on a daily basis and can thus easily solve challenging situations. This structure decreases chances of hierarchy, and it is easier to balance possible power shifts. In group homes, the features of institutional culture can be observed more often.
In institutions, the principle of self-determination is most desired by the management, while assistants believe that this is an unrealistic goal. In addition to the way they interpret their own role, this can be explained by environmental conditions. As long as there are service providers who respond to the lack of workforce by requiring restrictions on fulfilling basic needs (e.g. no need to bathe at weekends, workers buy their own nursing equipment, etc.), it is difficult to interpret the need for self-determination in relation to any actors involved. In smaller living arrangements, with more direct relationships, employees have more power to influence processes and are therefore more satisfied and more supportive.
The assistants’ ideals of living and working conditions are clearly determined by what kind of service they are employed in. Everyone called the form of living that represented the next step of independece ideal: for larger residentital institutions the group home, and for group homes supported living seems ideal. Assistants who work in large institutions typically imagine the development of a group home within the walls of the institution, as we have seen in our sample.
Persons with high support needs are typically considered to be children because of their intellectual abilities and very high care needs. In Western societies, children's self- determination is interpreted as a phenomenon of continuous development, oriented towards the future, one that can be brought about by strong limitations, starting with external control situations. Although the child status influences the nature of support, an ambivalent situation arises where the environment recognizes biological maturity and adulthood while it sees the stagnation of development. Therefore, the future-oriented and development-oriented aspect is missing in the process. A kind of „intermediate”, difficult-to-reach category is created at the border of childhood and adulthood, pevaded by the phenomenon of disability. In this context, the idea is that providing self-determination options considered „normal’ in our culture is neither necessary nor possible for members of this particular group.
15 There is a strong medicalization of the needs of persons with high support needs, which resulting from two factors: the dominance of the medical model, and the neoliberal image of the human being. From the assistants’ point of view, independence, self-reliance and responsibility appear as necessary criteria of adulthood that these people cannot fulfill.
We believe that the assistants’ roles are influenced by the living arrangement they are connected to. Relatives clearly perform their role in the family roles when performing their support functions. Among the interviewees, it was mainly mothers who saw their roles as unchanged from their child’s infancy. They consider the protection of their children as their most important task and do not want to give over the control of their children to paid assistants. At the same time, they were those who clearly stated that their adult children should be treated as adults, irrespective of their support needs.
The support staff working in institutions mostly interpret their role based on four pillars: education, protection, supervision and control. They believe that they work in the interests of persons with disabilities if they help them to accommodate themselves to institutional culture and keep them under constant control, thus preventing accidents or emergencies. In most cases this happens routinely, not consciously, and is not accompanied by professional reflection. At the same time, it confirms existing asymmetries of power in the system. In group homes and supported living, role interpretations are more in the direction of equality and partnership. The providers and users of these services have reported more dilemmas and questions about self-determination, which confirms that they have more differentiated understandings about the phenomenon and consider it an important professional principle.
We emphasize that, despite the uncertainty of the concept of adulthood, assistants regard persons with high support needs as valuable people. They talk about their relationships with deep emotional involvement and empathy. They think of them as persons who have rights and who should be treated as we would like to be treated in similar situations.
However, there is a systemic problem that some service providers mix adults with children under the age of 18. Under such conditions, no one can provide an individualized, age-appropriate support, so this solution is unacceptable. It should be noted that this is not to be confused with the situation of parents with disabilities living in an institutional setting with their children, even though the above dilemma may also exist in their case and they may require supported living alternatives.
In our work, we also assumed that in the context of group homes the key element in expanding the range of possibilities for self-determination is a complex assessment of
16 personal preferences. To that end, we made use of the biographical approach. Through the method of biography, it is possible to map the subjectively relevant areas of self- determination. During the joint work, it has been proven that through the complex assessment of persons with high support needs and the support team and through the mobilization of their resources, the extention of self-determination is possible. Our research process has shown that workers are not familiar with the persons they are supporting due to fluctuation and the pressures of great work load.
Without changing the existing financial conditions and institutional structures, small elements of everyday processes have been developed to facilitate the change from the insitutitonal culture to the paradigm of supported living servives. In doing so, it was crucial to improve the frequency and quality of communication among different actors and to increase their involvement through individual time and attention.
The fact, that parents and siblings are more likely to opt for full protection, does not make the cooperation easier between them and other support personnel. Although staff members are typically more open to support freedom, they are afraid of responsibility.
Facilitating the work of assistants is thus about finding a balance between restriction, responsibility, and self-determination.
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5. PRACTICAL APPLICATIONS OF RESEARCH RESULTS
The aims of our research were multi-directional. We did not only investigate the existing situation, but also generated change through the research process and as a result of it. This is how we got closer to the possibilities and limitations of the support of self-determination of persons with high support needs in Hungary today. Examining oppressive power mechanisms, powerstructures and making them visible can contribute to the group's empowerment and support the work of advocacy.
We are confident that the professional guide that is being developed after the research will provide assistants with useful input to be more aware of their activities. In the longer run, with the creation of more adequate external conditions, the quality of services and the quality of life of persons with high support needs and their assistants can be improved.
A well-documented process provides research methodology and research ethics support to those who want to conduct qualitative research or try to collaborate with persons with high support needs in their research. This can shift the researches from the dominant quantitative approach that uses proxy answers to participatory, user-led and controlled research approaches.
In the future there is a need for research that reflects more deeply on the social, and cultural elements that influence the interpretation of self-determination. It would be important to extend enquiry to people of different ages and sexes, and to those who belong to different disability groups, because we know that the subjective definition of self-determination can be influenced by these factors. Exploring similarities and differences could make for a more effective cooperation between persons with disabilities, their relatives and supportes, who often live in different cultural and social contexts. A fundamental question is the broader and narrower interpretation of the phenomenon of self-determination in Hungarian by introducing narratives of minority and/or marginalized groups, as this could support the adaptation of foreign theories, measuring tools, methodological protocols and results.
During our work, we also pointed out that the national literature on education does not deal with this topic. This can be partly explained by the fact that, as in the German context, more emphasis has been placed on school-based integration studies in recent decades.
We, however, encourage the topic to be raised in the context of pedagogy-connected disciplines, as it is known that the support of self-determination can significantly contribute to the success of inclusive education and to the achievement of educational goals. Self-
18 determination is also a predictive factor for the success of transitions and adult outcomes, so interdisciplinary, multifocal studies may indicate which areas may need to be developed in in the future in the fields of education, healthcare and the social sphere.
Our results underpin the need for the deinstitutionalisation process that is already on its way in Hungary and indicate the problems that could be solved in well-organized supported living services. Responsibility for the abuse of power is primarily not the responsibility of individuals. The problems and difficulties that have been identified suggest that there is a need for systemic changes, that are based on the social and human rights models of disability. These developments can only lead to a real self-determined way of life if they coexist with the restoration of the legal capacity of persons with disabilities and the development of a supported decision-making system.
We have presented a number of theoretical and empirical examples of how persons with high support needs form a vulnerable group. Their human dignity is violated because their most basic biological needs are often not satisfied. Today, it is perhaps not their social exclusion, but rather their marginalization within the disability system, which is the most urgent issue. Current discussions about deinstitutionalisation point to the danger that self- determination, as any other professional principle, misinterpreted, coupled with a utilitarian image of what „human” is, may lead to more exclusion from the scope of newly emerging services by classifying the members of the group as inferior. Because of unfavorable external conditions, self-determination seems to be a „luxurious” demand for qualified professionals as well. In the training of assistants, it is therefore extremely important to raise awareness of how the image of „human’ is constructed, and of the need for professional self-reflection. This must be complemented by supporting the empowerment of relatives and other allies in order to act together more effectively against the restrictions.
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Barnes, C. (1996). Disability and the Myth of the Independent Researcher. Disability &
Society, 11, (1), 107–110.
Barton, L. (2005). Introduction. In Barton, L. (Ed.). Disability and Dependency. Second Edition (pp. 1–5). London, New York: Routledge Farmer Press.
Bass L. (2004). SZÜLJÖN MÁSIKAT?! – Súlyosan-halmozottan fogyatékos gyermeket nevelő családok életkörülményei Magyarországon. In Bass L. (Ed.). Jelentés a súlyosan- halmozottan fogyatékos embereket nevelő családok életkörülményeiről, (pp. 54–91).
Budapest: Kézenfogva Alapítvány.
Beamer, S. and Brookes, M. (2001). Making Decisions: Best Practice and new ideas for supporting people with high support needs to make decisions. London: Values into Action.
Bigby, C., Clement, T., Mansell, J. and Beadle-Brown, J. (2009). „It’s pretty hard with our ones, they can’t talk, the more able bodied can participate”: staff attitudes about the applicability of disability policies to people with severe and profound intellectual disabilities.
Journal of Intellectual Disability Research, 53, (4), 363–376.
Corbin, J. and Strauss, A. (2015). A kvalitatív kutatás alapjai. Budapest: L’ Harmattan.
Dederich, M. (2008). Der Mensch als Ausgeschlossener. In Fornefeld, B. (Ed.). Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik (pp.
31–49). München: Ernst Reinhardt.
Emerson, E., Hastings, R. and McGill, P. (1994).Values, attitudes and service ideology. In Emerson, E., McGill, P. and Mansell, Jim (Eds.). Severe Learning Disabilities and Challenging Behaviours (pp. 155–172). London: Chapman and Hall.
Evans, S. (2010). Elfelejtett bűnök. A holokauszt és a fogyatékossággal élő emberek.
Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar, ELTE Eötvös Kiadó.
Fischer, D. and Bosse, D. (2010). Das Tagebuch als Lern-und Forschungsinstrument. In Friebertshäuser, B., Langer, A. and Prengel, A. (Eds.). Handbuch Qualitative Forschungsmethoden in der Erziehungswissenschaft (pp. 871–886). 3. Auflage. Weinheim, München: Juventa.
20 Fornefeld, B. (2008). Verantwortung für Menschen mit Behinderungen im Wandel der Zeit.
In Fornefeld, B. (Ed.). Menschen mit Komplexer Behinderung. Selbstverständnis und Aufgaben der Behindertenpädagogik (pp. 14–30). München: Ernst Reinhardt.
Friebertshäuser, B. and Panagiotopoulou, A. (2010). Ethnographische Feldforschung. In Friebertshäuser, B., Langer, A. and Prengel, A. (Eds.). Handbuch Qualitative Forschungsmethoden in der Erziehungswissenschaft (pp. 301–322). 3. Auflage Weinheim, München: Juventa.
Galambos É., Papp Z. and Verdes T. (2003). A minőség problémája a felnőtt értelmi fogyatékosok lakhatást nyújtó szociális ellátásában. TDK–dolgozat. In Könczei György (Ed.).
(2009a). A súlyos és halmozott fogyatékossággal élő emberek helyzete Magyarországon.
Tanulmánykötet (pp. 155–198). Első rész. Fogyatékosságtudományi tanulmányok VI.
Download: http://mek.oszk.hu/09500/09511/09511.pdf, 01. 09. 2017
Glaser, B. C. and Strauss, A. L. (2006). The Discovery of Grounded Theory. Strategies for Qualitative Research. New Brunswick, London: Aldine Transaction.
Haeberlin, U. (1996). Selbstständigkeit und Selbstbestimmung für alle – pädagogische Vision und gesellschaftliche Realität. Zeitschrift für Heilpädagogik, 47, (12), 486–492.
Hagen, J. (2007). „Und es geht doch!” Menschen mit einer geistigen Behinderung als Untersuchungspersonen in qualitativen Forschungszusammenhängen. Vierteljahresschrift für Heilpädagogik und ihre Nachbargebiete, 76, (1), 22–34.
Hellzen, O., Asplund, K., Sandman, P-O. and Norberg, A. (2004). The meaning of caring as described by nurses caring for a person who acts provokingly: an interview study.
Scandinavian Journal of Caring Sciences, 18, (1), 3–11.
Helmkamp, S. (2003). Partizipationsmöglichkeiten von Menschen mit schweren oder mehrfachen Behinderungen vermittels eines stellvertretenden, multiperspektivischen Verfahrens. In Deutsche Heilpädagogische Gesellschaft (Ed.). Strategien zur Selbstbestimmung und Teilhabe von behinderten Menschen mit hohem Hilfebedarf (pp. 22–
26). Tagungsbericht DHG-Workshop, 11/12. 2003, Bonn. Download:
http://dhg-kontakt.de/wp-content/uploads/2015/12/DHG-Schrift-11.pdf, 01. 09. 2017
Klauß, T. (2005a). Menschen mit schweren Behinderungen im Spannungsfeld unterschiedlicher Interessen. Referátum. „Wir gehören dazu” Teilhabe von Menschen mit schweren Behinderungen als Herausforderung für Praxis, Wissenschaft und Politik.
Magdeburg 22.–24. 09. 2005. Download:
https://www.lebenshilfe.de/wData/downloads/themen-recht/eroeffnungsrede.pdf, 01. 09. 2017 Klauß, T. (2005b). Selbstbestimmung als sinnvolles Leitmotiv einer anwendungsorientierten Forschung für Menschen mit geistiger Behinderung – ein Paradigmenwechsel? DIFGB, 17./18.11., Marburg. Download:
21 https://www.ph-
heidelberg.de/fileadmin/user_upload/wp/klauss/Selbstbestimmung_und_Forschung_DIFGB_
05.pdf, 01. 09. 2017
Kozma Á. (2008). Az intézetben élő értelmi fogyatékos emberek élethelyzete. In Bass L.
(Ed.). Amit tudunk és amit nem… az értelmi fogyatékos emberek helyzetéről Magyarországon (pp. 157–177). Budapest: Kézenfogva Alapítvány,
Márkus E. (2005). Súlyosan-halmozottan fogyatékos gyermekek nevelésének elméleti és gyakorlati problémái. Doktori disszertáció. Budapest: Eötvös Loránd Tudományegyetem.
Martin, J. E., Woods, Lee L., Sylvester, L. and Gardner, J. E. (2005). A Challenge to Self- Determination: Disagreement between the Vocational Choices Made by Individuals with Severe Disabilities and Their Caregivers. Research and Practice for Persons with Severe Disabilities, 30, (3), 147–153.
Mayring, P. and Gläser-Zikuda, M. (Eds.) (2008). Die Praxis der Qualitativen Inhaltsanalyse.
2. Auflage. Weinheim und Basel: Beltz Verlag.
Mayring, P. (2015). Qualitative Inhaltsanalayse. Grundlagen und Techniken. 12.
überarbeitete Auflage. Weinheim und Basel: Beltz Verlag.
Quinn, G. (2013). Liberation, Cloaking Devices and the Law. Or a personal reflection on the Law and Theology of Article 12 of the UN CRPD. Lecture, 13.11.2013. Budapest: Fogyatékos Emberek Szervezeteinek Tanácsa.
Seifert, M. (2006). Lebensqualität von Menschen mit schweren Behinderungen.
Forschungsmethodischer Zugang und Forschungsergebnisse. Zeitschrift für Inklusion–online, (2). Download:
http://bidok.uibk.ac.at/library/inkl-02-06-seifert-lebensqualitaet.html, 01. 09. 2017
Shalock, R. L., Verdugo, M. A., Jenaro, Ch., Wang, M.-Wehmeyer, M., Jiancheng, X. and Lachapelle, Y. (2005). Cross-Cultural Study of Quality of Life Indicators. American Journal on Mental Retardation, 110, (49), 298–311.
Theunissen, G. (2012). Lebensweltbezogene Behindertenarbeit und Sozialraumorientierung.
Eine Einführung in die Praxis. Freiburg: Lambertus.
Verdes T. (2009). „A ház az intézet tulajdona”. A totális intézmények lebontásáról, humanizálásáról és modernizálásáról. Esély, 20, (4), 92–114. Download:
http://www.esely.org/kiadvanyok/2009_4/05verdes.pdf, 01. 09. 2017
Walker, H. M., Calkins, C., Wehmeyer, M. L., Walker, L., Bacon, A., Palmer, S. B., Jesien, G. S., Nygren, M. A., Heller, T., Gotto, G. S., Abery, B. H. and Johnson, D. R. (2011). A Social-Ecological Approach to Promote Self-Determination. Exceptionality: A Special Education Journal, 19, (1), 6–18.
22 Wehmeyer, M. L. (1999): A Functional Model of Self–Determination: Describing Development and Implementing Instruction. Focus on Autism and Other Developmental Disabilities, 14, (1), 53–62.
Wehmeyer, M. L., Agran, M. and Hughes, C. (2000). A National Survey of Teachers' Promotion of Self–Determination and Student–Directed Learning. The Journal of Special Education, 34, (2), 58–68.
Wehmeyer, M. L. (2005). Self-determination and Individuals with Severe Disabilities: Re–
examining Meanings and Misinterpretations. Research and Practice for Persons with Severe Disabilities, 30, (3), 113–120.
Weigand, G. (2009). Einleitung der Herausgeberin. In Weigand, G. (Ed.). Die Praxis des Tagebuchs. Beobachtung- Dokumentation- Reflexion (pp. 7–32). Münster: Waxmann Verlag.
Weingärtner, C. (2009). Schwer geistig behindert und selbstbestimmt. Freiburg: Lambertus.
Young, I. M. (1990). Az elnyomás öt arca. (ford. Harasztosi P. and Kacsuk Z.) Young, I. M.
Justice and the politics of difference. Chapter 2: Five Faces of Opression (pp. 39–65).
Princeton: Princeton University Press alapján. Download:
http://www.kallaierno.hu/data/files/az_elnyomas_arca_YWop5A.pdf, 01. 09. 2017
Zászkaliczky P. (Ed.). (1998). A függőségtől az autonómiáig. Helyzetértékelés és jövőkép a kiscsoportos lakóotthonokról. Budapest: Kézenfogva Alapítvány.
Zászkaliczky P. (2014). A gyógypedagógia: a fogyatékosság tudománya. Fogyatékosság és Társadalom, (5–6), 73–85
23
7. LIST OF PUBLICATIONS
7.1. Articles in scientific journals
Sándor A. (2018). „Az együttgondolkodásból fakadó többlettudás az értelme”: Az inkluzív kutatás módszertana egy fogyatékosságtudományi kutatás tapasztalatai tükrében.
Gyógypedagógiai Szemle, 46, (1), 12-32.
Sándor A. (2017). „Úgy kell kezelni őket, mintha tényleg igazi felnőttek lennének…”.: Magas támogatási szükségletű személyek önrendelkezésének lehetőségei és korlátai. Esély, 2, 29-53.
Sándor A., Horváth P. and Radványi K. (2015). A gyógypedagógia és a társadalmi kirekesztés új formái. Gyógypedagógiai Szemle, 43, (2), 117-130.
Heiszer K., Katona V., Sándor A., Schnellbach M. and Sikó D. (2014). Az inkluzív kutatási módszerek meta-szintű vizsgálata. Neveléstudomány, (3), 53-67.
Sándor A. (2014). Élek és szeretek: Egy különleges ember hétköznapi élete, avagy egy hétköznapi ember különleges élete. Fogyatékosság és Társadalom, (5-6), 128-135.
Sándor A. (2012). Theunissen, Georg: Empowerment und Inklusion behinderter Menschen.
Eine Einführung in Heilpädagogik und Soziale Arbeit. Gyógypedagógiai Szemle, 40, (3), 284- 285.
7.2. Books and book chapters
Könczei Gy. and Sándor A. (in press): Spirituality and Disability. In Zsolnai L. and Flanagan, B. (Eds.). International Handbook of Spirituality and Society. Routledge.
Horváth P. L. and Sándor A. (2017). Bioetika a fogyatékosságtudomány perspektívájából. In:
Flamich M., Hernádi I., Hoffmann R., Sándor A. (Eds.). Paradigmák örvényében:
Fogyatékosságtudomány Magyarországon, (pp. 35-46). Budapest: Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Sándor A.: „Az intézetben nem hagyták őket felnőni...”: Támogató személyek tapasztalatai az önrendelkezésről. In: Bogdán B., Cserti-Szauer Cs., Katona V., Sándor A. (Eds.) Befogadás és önrendelkezés: Absztraktkötet: Magyar Gyógypedagógusok Egyesülete Felnőtt Fogyatékosságügyi Szakosztály. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar, 2017. pp. 10-16.
Sándor A. és Horváth P. L. (2016). „Kann ich auch eine Familie haben?”: Über das Recht behinderter Kinder auf eine Familie. In Hedderich, I. és Zahnd, R. (Eds.). Teilhabe und Vielfalt: Herausforderungen einer Weltgesellschaft, (pp. 407-416). Bad Heilbrunn: Klinkhardt.
Sándor A. (2016). Magas támogatási szükségletű és intellektuális fogyatékossággal élő tanulók önrendelkezése a neveléstudomány nézőpontjából. In Juhász Gy., Orsovics I. and Nagy M. (Eds.). Korszerű szemlélet a tudományban és az oktatásban = Súčasné aspekty vedy
24 a vzdelávania: SJE Nemzetközi Tudományos Konferencia, (pp. 164-188). Komárno: Selye János Egyetem.
Könczei Gy., Heiszer K., Hernádi I., Horváth P., Katona V., Kunt Zs., Sándor A. (2015).
Kutatásetikai alapvetés a fogyatékosságtudományhoz: A kontextusról, alapvető szabályokról és levezetett szabályokról. In Hernádi I. and Könczei Gy. (Eds.). A felelet kérdései között:
Fogyatékosságtudomány Magyarországon, (pp. 152-157). Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Kunt Zs. and Sándor A. (2015). „Bölcsőtől a sírig”: Halál, haldoklás a fogyatékosságtudomány és a gyógypedagógia kontextusában. In Hernádi I. and Könczei Gy.
(Eds.). A felelet kérdései között: Fogyatékosságtudomány Magyarországon, (pp. 135-150).
Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Hernádi I., Könczei Gy., Kunt Zs. and Sándor A. (2014). A fogyatékosságtudomány a mindennapi életben: Szokatlan szempontok kritikai világlátásunkhoz. Budapest: Budapesti Műszaki és Gazdaságtudományi Egyetem.
Sándor A. (2014). Magas támogatási szükséglettel élő személyek önrendelkezés In Hernádi I., Könczei Gy., Kunt Zs. and Sándor A. (2014). A fogyatékosságtudomány a mindennapi életben: Szokatlan szempontok kritikai világlátásunkhoz, (pp. 86-115). Budapest: Budapesti Műszaki és Gazdaságtudományi Egyetem.
7.3. Edited volumes
Bogdán B., Cserti-Szauer Cs., Katona V., Sándor A. and Zászkaliczky P. (Eds.) (2018).
Problémafelvetések a támogatott lakhatás témaköréhez kapcsolódva. Tanulmánykötet.
Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar. Download:
https://edit.elte.hu/xmlui/bitstream/handle/10831/37933/Probl
%C3%A9mafelvet%C3%A9sek%20a%20t%C3%A1mogatott%20lakhat%C3%A1s
%20t%C3%A9mak%C3%B6r%C3%A9hez%20kapcsol%C3%B3dva_A.pdf?
sequence=2&isAllowed=y
Bogdán B., Cserti-Szauer Cs., Katona V. and Sándor A. (Eds.) (2017). Befogadás és önrendelkezés: Absztraktkötet: Magyar Gyógypedagógusok Egyesülete Felnőtt Fogyatékosságügyi Szakosztály. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Download:
https://edit.elte.hu/xmlui/bitstream/handle/10831/34822/Befogad%C3%A1s_%C3%A9s%20
%C3%B6nrendelkez%C3%A9s_A.pdf?sequence=1&isAllowed=y
Flamich M., Hernádi I., Hoffmann R. and Sándor A. (Eds.) (2017). Paradigmák örvényében:
Fogyatékosságtudomány Magyarországon. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar. Download:
http://www.eltereader.hu/media/2017/11/Paradigmak_orvenyeben_KONF_2017_EGYBEN_
VEGLEGES.pdf
Katona V. and Sándor A. (Eds.) (2017). Ötödik Magyar Fogyatékosságtudományi Konferencia „Poszthumanizmus és fogyatékosság – mit jelent embernek lenni a 21.
században?” Absztraktok. Budapest: Eötvös Loránd Tudományegyetem. Download:
25 http://www.eltereader.hu/media/2017/11/Paradigmak_orvenyeben_KONF_2017_EGYBEN_
VEGLEGES.pdf
7.4. Conference abstracts and presentations
Sándor A. (2018). A nagylétszámú bentlakásos intézményektől a támogatott lakhatásig:
Intellektuális fogyatékossággal élő személyek önrendelkező életútjai.
In Az Új Nemzeti Kiválóság Program 2018. évi záró konferenciájának absztraktfüzete, (pp.
283). Download:
https://www.elte.hu/dstore/document/1670/UNKP_ABC_WEB.pdf (2018)
Sándor A., Horváthné Somogyi I., Iván Z. and Kalányos Gy. (2018). „Kicsit kemény, nehéz, de kezdem élvezni”: Önrendelkezés támogatott lakhatásban - egy participatív kutatás tapasztalatai. Lecture at the international closing conference of PODIUM project, 19.4.2018.
Antal Zs., Csángó D., Cserti-Szauer Cs., Futár A., Horváth P. L., Katona V. and Sándor A.
(2018). Együtt tanítunk és kutatunk! Társadalmi és technológiai innovációk - a fogyatékos emberek teljes körű társadalmi részvétele. V4 konferencia programfüzet, (pp. 37).
Budapest: Emberi Erőforrások Minisztériuma.
Cserti-Szauer Cs., Katona V., Sándor A., Losoncz M., Kun Zs. and Tausz K. (2017).
PODIUM training module and supported living practices. Lecture at the PODIUM projekt, Supported Living for everyone – the needs of persons with disabilities in focus workshop series. 8-10.2.2017.
Cserti-Szauer Cs., Futár A., Katona V., Sándor A., Bogdán B., Kun Zs., Losoncz M. and Tausz K. (2017). The Theory and Practice of Supported Living. Erasmus+ PODIUM (Path Of Deinstitutionalisation – Urgent Moves) c. nemzetközi projekt partnertalálkozóján a tananyagfejlesztés bemutatása. Belgrád.
Hernádi I., Katona V., Kunt Zs. and Sándor A. (2017). Fogyatékosság és poszthumán, a fogyatékosságtudomány perspektívái/Disability and Post-human, Perspectives in Disability Studies. In Gábriel D., Kund A. és Paksi V. (Eds.). Modernitások. A Magyar Szociológiai Társaság vándorgyűlése. Absztraktkötet, (pp.55). Budapest: MSZT – Károli Gáspár Református Egyetem. Download:
http://www.szociologia.hu/dynamic/modernitasok_mszt_vandorgyules_2017_absztraktfuzet.p df
Sándor A. (2017). Az inkluzív kutatás módszertana fogyatékosságügyi kutatásokban. In Az Emberi Erőforrások Minisztériuma által meghirdetett Új Nemzeti Kiválóság Program 2016/17. évi ösztöndíjasainak szervezett konferenciája az Eötvös Loránd Tudományegyetemen. Program és absztraktfüzet, (pp.73). Download:
https://www.elte.hu/media/a5/92/62ad65058d75c537e7a90c371dfb810983fa93daa6710f0163 c11aca7390/elte%20unkp%20konferencia_04_26.pdf
Sándor A. (2017). A korlátozás alternatívái az önrendelkezési paradigma tükrében. Lecture at the Gyógytea Extra conference, 15.6.2017. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
26 Sándor A. and Könczei Gy. (2017) „Amíg tart az életük, többet érdemelnének, mint amit most kapnak”: A gyakorlat üzenetei az emberi jogi megközelítés számára. Lecture at the conference in honor of the 85th birthday of dr. Hatos Gyula 85. „Az értelmileg akadályozott felnőttek kísérése: múlt, jelen, jövő” conference, 16.11.2017. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Márkus E. and Sándor A. (2016). Attitűdváltás a gyógypedagógus-képzésben: a döntéshozatal participatív-kommunikatív megközelítése. Lecture az „Enyém a döntés! Halmozottan fogyatékos tanulók felkészítése az önérvényesítésre, támogatott döntéshozatalra”
Konferencián, 03.06.2013, Debrecen.
Sándor A. (2016). Önrendelkező életre nevelés és magas támogatási szükséglet. In Zsolnai A.
and Kasik L. (Eds.). A tanulás és nevelés interdiszciplináris megközelítése: XVI. Országos Neveléstudományi Konferencia: Program és absztraktkötet, (pp. 271). Szeged: SZTE BTK Neveléstudományi Intézet; MTA Pedagógiai Bizottság.
Sándor A. and Horváth P. L. (2016). I want a family too! Adoption of children with disabilities in Hungary. In Inclusion, Participation and Human Rights in Disability Research - comparisons and exchanges. Abstracts, (pp. 97). Stockholm. Download:
https://alterconf2016.sciencesconf.org/data/pages/book_alterconf2016_3sept.pdf
Sándor A. and Horváth P. L. (2016). I want a family too! Adoption of children with disabilities in Hungary. In Morgan, H. and McWade, B. (szerk.). Lancaster disability studies conference: Book of abstracts, (pp. 27). Lancaster: Centre for Disability Research (CeDR);
Lancaster University.
Sándor A. (2015). Magas támogatási szükséglettel élő emberek önrendelkezési lehetőségei: Jó gyakorlat, merre vagy? Lecture at the Gyógytea workshop series 2. vol: Súlyosan és halmozottan fogyatékos személyek számára nyújtott szolgáltatások Magyarországon, 28.5.2015. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
Sándor A. (2013). „Semmit rólunk, nélkülünk”- Fogyatékosügyi mozgalmak a holokauszt után. Lecture at the XX.századi Taigetosz – Megemlékezés a fogyatékos emberek holokausztjáról project opening conference, 13.12.2013. Debrecen.
Sándor A. (2012). Támogatott döntéshozatal a gyakorlatban. Lecture at the MAGYE 40.
conference, 22.6.2012. Kiskőrös.
Sándor A. (2012). Támogatott döntéshozatal – egy németországi kutatás tapasztalatai. Lecture at the Celebration of Hungarian Science, 13.11.2012. Budapest: ELTE Bárczi Gusztáv Gyógypedagógiai Kar.
7.5. Other lectures and policy papers
Sándor A. (2018). Deinstitutionalisierung in Ungarn - aktuelle Tendenzen. Guest lecture at Martin-Luther-Universität Halle-Wittenberg., 28.5.2018. Halle an der Saale.
Sándor A. (2018) Inklusion in der Forschung. Guest lecture at Martin-Luther-Universität Halle-Wittenberg, 29.5.2018. Halle an der Saale.
27 Sándor A. (2017). Menschen mit Lernschwierigkeiten in Ungarn. Online guest lecture at Pädagogische Hochschule Heidelberg, 12.6.2017.
Sándor A. (2017). Selbstbestimmung von Menschen mit hohem Unterstützungsbedarf Guest lecture at Martin-Luther-Universität Halle-Wittenberg, 10.4.2017. Halle an der Saale.
Cserti-Szauer Cs., Csabai L., Dávid A., Fehér I., Gordos E., Gurbai S., Harangozó J., Hoffmann I., Horváth P., Katona V., Kondor Zs., Kovács M., König É., Kristóf R., Kolutácz Gy.-né, Nádas P., Sándor A., Szőke Zs., Vályi R., Zászkaliczky P., Bódy É. and Juhász P.
(2016). Javaslattétel a fogyatékossággal élő személyek számára ápolást-gondozást nyújtó szociális intézményi férőhelyek kiváltásáról szóló stratégia (2011-2041) módosításának szakmai tartalmaira, (pp. 1-42). Budapest.
Sándor A. (2013). A támogatott döntéshozatali modell gyakorlati megvalósulása intellektuális fogyatékossággal élő személyek esetében: Egy németországi vizsgálat eredményei. I.
helyezett TDK dolgozat, XXXI. OTDK Társadalomtudományi Szekció, Supervisor: Dr.
Könczei György.
Sándor A. (2013). A Támogatott Foglalkoztatás gyakorlati megvalósulása intellektuális fogyatékossággal élő munkavállalók esetén. BA Thesis. Budapest: Budapesti Gazdasági Főiskola. Supervisor: Dr. Csillag Sára.
Sándor A. (2012). Supported Decision Making (SDM) in der Praxis. Guest lecture at Martin- Luther-Universität Halle-Wittenberg, 30.10.2012. Halle an der Saale.
