#### STUDI E SAGGI

– 199 –

Antonio Laurìa, Beatrice Benesperi, Paolo Costa and Fabio Valli

# Designing Autonomy at Home. The ADA Project

An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons

> FIRENZE UNIVERSITY PRESS 2019

Designing Autonomy at Home. The ADA Project : an Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons / Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli. – Firenze : Firenze University Press, 2019. (Studi e saggi ; 199)

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ISBN 978-88-6453-897-6 (print) ISBN 978-88-6453-898-3 (online PDF) ISBN 978-88-6453-899-0 (online EPUB)

Graphic design: Alberto Pizarro Fernández, Lettera Meccanica SRLs Cover image: logo of the Ada Project designed by Antonio Laurìa

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## Contents

Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli, *Designing Autonomy at Home. The ADA Project. An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons*, ISBN (online PDF) 978-88-6453-898-3, © 2019 FUP, CC BY 4.0 International, published by Firenze University Press

## Foreword

Stefania Saccardi1

For many years, Tuscany Regional Government has been involved in the promotion of policies that define a central role for the disabled person developing their capacities and potential for growth in directions that are not those of pure welfarism. These policies aim to develop autonomy and personalise interventions. Indeed, only through greater levels of autonomy will the disabled person be able to participate in the social life of the community, have access to employment, and prepare themselves for the "after us" phase, namely when they will no longer be able to rely on the support of parents as main caregivers.

From our perspective, accessibility at all levels, from private and public environment to education, employment, information, and services, as well as transport, cultural and recreational services, becomes a prerequisite for allowing the disabled person to enjoy all human rights and fundamental freedoms: it must be guaranteed in all spheres of a person's life.

Actions put in place by Regional Government to promote independent living, remove architectural barriers, simplify access, etc., make Tuscany one of the most advanced regions in Italy, including from the perspective of overall financial commitment.

Tuscany Regional Government supports actions to offer frail and disabled persons an autonomous way of life and social integration, identifying the most adequate and efficient solutions to increase levels of accessibility and usability of the territory.

The ADA Project described in this book represents another step forward on the path toward providing care for the disabled person, with the purpose of making the home environment more autonomous, accessible and practical.

1 Tuscany Regional Government Councilor for *Health, Welfare and Social-Health Integration and Sport*.

Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli, *Designing Autonomy at Home. The ADA Project. An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons*, ISBN (online PDF) 978-88-6453-898-3, © 2019 FUP, CC BY 4.0 International, published by Firenze University Press

These are certainly long, complex projects, to be developed in tandem and requiring a high level of participation by the disabled persons themselves, their families, and the associations representing them, as well as the institutional and voluntary sector agencies engaged in different roles and with different responsibilities, but all sharing the aim of guaranteeing the best possible quality of life.

# Preface

Antonio Laurìa

This book describes the ADA Project, an action research developed by the University of Florence (Department of Architecture – Florence Accessibility Lab Interdepartmental Research Unit) and commissioned by Tuscany Regional Government.

The ADA Project was already described in a previous book published for Italian readers (Laurìa *et al*., 2017) but this new edition includes the latest research developments and previously unpublished features. Moreover, contents have been organised to appeal to the international reader. New parts were written, others modified, and the bibliography, tables and images were improved and honed. Parts which would not have been meaningful to non-Italian readers have been deleted; other parts were added with the purpose of elucidating for foreign readers certain issues peculiar to the Italian context. The methodological design of the research and its operating tools have been fine-tuned and are described in their definitive version, excluding all the intermediate passages illustrated in detail in the Italian original.

Accessibility of the book was also taken into account, to render the contents truly straightforward for the widest possible spectrum of users, including those who are unable to see images and complex tables. Specifically, alternative descriptions are provided for any non-textual section, to provide the sight-challenged reader with equivalent content.

The book is divided into two sections: the first outlines the theoretical framework of the ADA Project and the cultural principles upon which it is based; the second describes planning stages and operating tools in detail.

Section one examines the personal and environmental factors (both physical and socio-cultural) that characterise life at home for disabled persons and their caregivers. The evolution of the concepts of disability, personal autonomy and independent life are discussed. The issue of adapting the domestic environment is then analysed through the description of sev-

Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli, *Designing Autonomy at Home. The ADA Project. An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons*, ISBN (online PDF) 978-88-6453-898-3, © 2019 FUP, CC BY 4.0 International, published by Firenze University Press

eral methods and tools, and the subject of *housing adaptation* is introduced through the description of intervention strategies and criteria.

Section two is the core of the book: it provides a methodical illustration of the various phases of the ADA Project, its aims, its recipients and beneficiaries, as well as the procedure and tools used, the players and the relationships with the agencies involved. In particular, a tool for data production and needs assessment (the ADA Assessment Model – AdAM) is carefully described. This tool represents the main scientific and methodological outcome of the ADA Project and is reproduced in full in the Annexe to the book.

Since most challenges addressed by the ADA Project are general in nature and might be met in any context, I hope the reader finds food for thought in the research described in this book, as well as some interesting ideas useful for their own work.

In 2018 the ADA Project was first selected as "Good Practice" by the international Design for All Foundation and then won the "Design for All Foundation Award 2018," in the category "Spaces, products and services already in use."

## Credits

The ADA Project's methodological design and operating tools were conceived and gradually perfected (also in collaboration with other partners)1 by the research group put together at the *Florence Accessibility Lab* Interdepartmental Research Unit of the University of Florence, which comprised Antonio Laurìa (AL), Beatrice Benesperi (BB), Paolo Costa (PC) and Fabio Valli (FV).

The book is the result of the collective work of its four authors and their various roles are detailed below.

Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli, *Designing Autonomy at Home. The ADA Project. An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons*, ISBN (online PDF) 978-88-6453-898-3, © 2019 FUP, CC BY 4.0 International, published by Firenze University Press

## Additional contributions

Angela Arnone edited and revised the English text.

Junik Balisha wrote paragraph 2.5 and prepared all the figures and tables included in the book.

I.RI.FO.R. Toscana assisted with the edition.

Luis Gatt translated the manuscript into English.

Barbara Leporini supervised the alternative textual descriptions of the images for visually impaired people.

## Acknowledgements

The ADA Project began in April 2015 and is currently in progress. During this relatively long period, a series of wonderful relationships were established among the people who took part in the project and we wish to express our gratitude to them.

First of all, we would like to thank all the disabled persons who participated in the ADA Project, as well as their families. By welcoming us into their homes with trust and curiosity, speaking to us about their experiences, their desires and their life projects, they made the project more meaningful and enhanced our skills and awareness.

The close and productive cooperation between the Health, Welfare and Social-Health Integration and Sport Department of the Tuscany Regional Government and the Florence Accessibility Lab Interdepartmental Research Unit of the University of Florence was one of the reasons for the success of the ADA Project. In this respect we wish to thank Councillor Stefania Saccardi who believed in the ADA Project and supported it wholeheartedly.

We also wish to thank Barbara Trambusti, head of the General Office for Citizen Rights and Social Cohesion – Social and Healthcare Integration Policies Sector of Tuscany Regional Government, who always encouraged us and generously offered us her time and attention. We also thank two members of her staff, Giuseppina Attardo and Davide Ricotta, for their support to the Project.

Our gratitude to Franco Doni and Laura Zecchi – respectively Director and Programming Coordinator of the "Fiorentina Nord Ovest" Health District – for their commitment and cooperation while performing the delicate task of providing administrative coordination for the ADA Project on behalf of the Tuscany Regional Government.

If the ADA Project was carried out as planned, overcoming every obstacle and difficulty, it is due largely to the enthusiasm and generous and competent commitment of Andrea Valdrè, coordinator of Tuscany's Regional Accessibility Centre. We wish to express our personal thanks to him and to his team – Adriana Ferrara, Chiara Bondielli, David Burgalassi and Roberto Sarti – for the dedication with which they addressed and resolved a series of problems, both small and large.

It is also our duty to thank all those who worked with us in the fulfilment of the ADA Project. It would be impossible to mention everyone but we are particularly grateful to all the physicians and social workers who were part of the work groups, and all the administrative personnel of Tuscany's health districts.

For the quality and continuity of their contribution, a special mention goes also to Annaugusta Alimenti, Giuseppe Fusco, Barbara Leporini, Cecilia Lombardi, Alessandro Lussu, Anna Chiara Marini and Laura Rosiello and the research fellows of the University of Florence's Architecture Department: Chiara Angioli, Enrico Cibei, Lucas Frediani, Giordana Gregori, Marco Mariotti, Nadia Recca, and Lulghennet Teklè.

Barbara Leporini and Antonio Quatraro deserve special thanks for their precious supervision of the version of the book for the visually impaired.

Our sincere thanks go to Marta and Massimo Tilli for their generosity in revising the ADA Assessment Model from a medical perspective, and to Sergio Aito and Adam Wood for their precious advice.

We wish once again to thank Junik Balisha, PhD student in Architecture at the University of Florence, who did such an excellent job preparing and presenting the tables, figures and images included in the book and wrote paragraph § 2.5, Luis Gatt, of the University of Florence's Architecture Department Image and Communication Lab, who translated the manuscript into English, and Angela Arnone who edited and revised the English text offering valuable advice and suggestions.

Finally, we wish to express our appreciation to the administrative personnel of the University of Florence's Architecture Department, and in particular to Gioi Gonnella, Donatella Cingottini, Stefano Cocci, and Anna De Marco for the professionalism and care with which they carried out the complex bureaucratic procedures concerning the ADA Project.

*Antonio Laurìa, Beatrice Benesperi, Paolo Costa and Fabio Valli Florence, January 2019*

## Introduction

The ADA Project (*Adattamento Domestico per l'Autonomia personale* – Adaptation of Homes for Personal Autonomy) is a Tuscany Regional Government *action research* dedicated to persons with severe disabilities and their caregivers in their home environment. It intends to increase domestic autonomy by adapting home space, furnishings, equipment and technological installations.1

It comprises three *implementation phases*: (1) the *site survey* undertaken at the dwelling of the disabled person, to bring to light their needs and wishes, (2) the *accessibility recommendations* suggesting an intervention framework for adaptation of the homes of the disabled and their families, and (3) *case assessment* to define and assign regional grants for entitled disabled persons.

The methodological design of the ADA Project envisages a *preparatory phase* before the implementation phases, and an *ex-post evaluation* phase downstream of the implementation phases.

The preparatory phase intends to draft procedures and operating tools, and train those who perform data collection and administration procedures during the implementation phases. The ex-post evaluation phase intends to assess the efficiency of the process and the relevance of its results2*.*

The ADA Project was composed of two different stages: the first, aimed primarily to field-test procedures and operating tools, regarded only two of

1 The methodological design and operating tools of the ADA Project were developed by a research group of the Florence Accessibility Lab Interdepartmental Research Unit (FAL) of the University of Florence, comprising Antonio Laurìa (principal investigator), Beatrice Benesperi, Paolo Costa, Fabio Valli (researchers), and Junik Balisha (associate researcher).

2 The ex-post evaluation phase is still in progress and will then be the subject of a future publication.

Tuscany's health districts3 (pilot stage);4 the second stage went on to extend the ADA Project to the entire region.5 Both the procedures and operating tools used during the first stage underwent a careful step-by-step revision based on results and empirical knowledge progressively acquired during fieldwork.

The ADA Project can be shown succinctly as a four-dimensional matrix, as seen in Fig. 1.

Figure 1 – The ADA Project as a four-dimensional matrix on how to achieve personal autonomy for severely disabled persons in their homes.

The purpose of the ADA Project is to increase *personal autonomy* of the severely disabled person in their home environment. Autonomy is a multidimensional process which tends toward self-determination of the person. Since being human includes the concept of autonomy, the addition of the adjective "personal" may seem pleonastic but here the term is used to underscore that improving autonomy should be a highly personalised process and one that respects the pace and methods desired by the disabled person (see Ratzka, 1989).

The beneficiary of the ADA Project is the *person with severe disability*. In Italy, the condition of severe disability is defined by the existing regulatory framework based on the extent to which a person's autonomy is limited in performance terms.6 Regulations, in other words, focus on the *effects* that the functional limitations (motor, sensory perception, mental, behavioural, etc.) can generate in a person's everyday life. Statistical data to illustrate the numerical framework of disability (see ISTAT, 2014) assume as a reference personal capacity in the undertaking of certain activities of daily living (ADLs – *Activities of Daily Living*) (Solipaca, 2009).

The *home environment* is the heart of the ADA Project. It relates to a deep-rooted sense of identity, intimacy and protection; it is the place of family memories; it is the primary space "containing" our bodies, our stories, our needs and desires; it is the interactive context that affects many of our activities (Norberg-Schulz, 1985). For the disabled, home often represents the context where most everyday activities are undertaken. In particularly serious cases, or when family links and social opportunities are weak or broken, home is the extension of their range of activity in the world, the entire horizon of their existence. Since it has such a delicate and significant role in the life of the severely disabled person, the home environment represents a particularly important subject for reflection in terms of public policies intended to support their rights as citizens. The home environment is also the ADA Project's area of operation, so everyday activities outside the home environment (for example, going shopping), while extremely significant, do not fall within the scope of the research. In this respect, the ADA Project must be integrated with other measures whose aim is to improve the degree of accessibility of urban spaces, transport, and public buildings, or those intended for public use (see Laurìa, 2012a; 2014a).

*Housing adaptation* is the main support offered by the ADA Project for the severely disabled (and their caregivers) for undertaking of domestic activities. It is a dynamic, two-directional process (see French *et al*., 1982; Edwards *et al*., 1998), comprising on the one hand the conversion of the environment (physical and social) to suit human capabilities; on the other, the resilience of the individual towards the demands of their environment

6 See Art. 3, para. 3 of Law 104/1992, as subsequently amended and supplemented.

(see Kreisler, 1996; Carver, 1998). This process is regulated by *human needs*, the meeting point – as Heschel (1951) writes – between the interior world and the environment. In the case of frail and disabled persons, the process of environmental adaptation is heavily "unbalanced" since their prospects for responding efficiently to the demands of the environment are reduced or compromised by their functional limitations. In particular, for persons with severe disabilities, even slight disparities between what is necessary or desired and what is concretely possible, can compromise or obstruct the process of environmental fit. Consequently, the ADA Project – together with the biopsychosocial model of disability,7 advocated both by the World Health Organization through the *International Classification of Functioning, Disability and Health* (ICF) (WHO, 2001; Barnes & Mercer, 2005; WHO & WB, 2011), and by the United Nations through the *Convention on the Rights of Persons with Disabilities* (CRPD) (UN, 2006),8 and with the *human-centred* approach to design – focuses on the changes to the physical environment *in favour* of the disabled person, and in particular on the enhancement of the *degree of accessibility*9 of the home environment. This goal is strengthened by collateral actions, such as rehabilitation interventions and welfare support, aimed at exploiting personal motivations and aspirations, as well as personal capacities and social relationships.

This book describes the cultural background and the main sources of inspiration of the ADA Project (Chapters 1 and 2), and its phases and its means of implementation (Chapters 3, 4 and 5). The phases and means are illustrated taking into account all the progress that was made during the research from the very start.

7 See § 1.2.

SECTION I

Theoretical framework

## CHAPTER 1 Basic concepts

The promotion of personal autonomy is one of the fundamental values of policies in favour of disabled persons. Personal autonomy is generally interpreted as the ability to carry out certain activities without the assistance of others or, in a wider sense, as the capability to design one's own life project, relate to others and, with others, cooperate in the development of society. This second interpretation is strictly linked to the principle of self-determination of the disabled person and of their involvement in the life of the community (independent living). In this chapter, after a reflection on the concepts of normality and disability, and on the process of environmental adaptation, we outline the more recent evolution of the meaning of disability and discuss the concepts of personal autonomy and independent living.

#### 1.1 Normality/Disability

Giuseppe Pontiggia, in his book *Born Twice*, addresses the issue of the relationship between disability and normality perfectly, explaining how "it's not by denying the existence of difference that we can fight it, but by modifying our image of the norm." Pontiggia does not ignore the existence of differences but places them in a broader perspective "accepting and transcending them." He thus highlights the theoretical weakness "both for those who make differentiation into discrimination and for those who try to avoid discrimination by entirely denying the existence of difference" (Pontiggia, 2002: 28-29).

Pontiggia's theoretical view seems fundamental for a correct definition of the complex questions regarding the social integration of disabled persons and the full exercise of their citizenship rights. At the same time, this seems very difficult to put into practice.

To allow disabled persons to enjoy the same rights as others would, indeed, require a shift in the paradigm our society applies with regard to the actual meaning of "disability", as well as overcoming or de-structuring disability as a social category.1 First of all we would need a perspective of social cooperation no longer based on reciprocal economic benefit, but rather on benevolence and altruism (Nussbaum, 2011). It would then be necessary for disability policies to stop being *special* and simply be *ordinary.* In other

1 See also § 1.3.

words, implementing a *mainstreaming strategy*, the subject of disability would no longer be an afterthought – based on adjustments and compromises – to general decisions made, but an organic part of these decisions (see Commission of the European Communities, 2003).2 On the other hand, evidence of weakness in the boundary between ability and disability,3 the rising incidence of disabled persons as an epiphenomenon of the betterment of living standards, diagnostic and therapeutic progress in the medical field, and the consequent evidence that, in a certain sense, the entire population is "at risk," in terms of chronic disease and disability, seem to validate the need to overcome *special* policies and rely on *universal* policies instead (Zola, 1989).4 This need exists at all levels: from the creation of laws and institutions at the core of society to regulations concerning employment, education, health, construction, and so on.

The architectural design process would be an apt metaphor for the widespread manner of understanding disability. Usually, the topic of accessibility (or more typically, that of the elimination of architectural barriers) does not inform the early stages of design and is addressed by architects and designers as a simple regulatory requirement after the main design decisions have been made and the *system of constraints* (aesthetic, technological, structural, plant engineering, functional, etc.) has been defined. The result is that the solutions provided for satisfying the needs of the disabled do not appear as an integral, coherent part of planning overall but as *prostheses,* namely artificial and often functionally and semantically questionable grafting of alien parts onto a "body" that continues to be similar to itself (Laurìa, 2012c).

Modification of the image of what is the norm that Pontiggia describes, questions each of us on how we address the subject of disability (and other social diversities), our intention to make a sincere commitment to adapting our values and behaviour to understand others and welcome them into our shared living environment.

BASIC CONCEPTS

#### 1.2 Person-Environment Fit

The *living environment* is not a neutral space, but always an "operating factor" (Fitch, 1972; Canter & Lee, 1974) of human life. The environment dynamically shapes the behaviour, expectations and aspirations of those who inhabit it. In turn, the inhabitants intervene constantly in its transformation (see, *inter alia*, Lawton & Simon, 1968; Boudon, 1969; Alexander, 1970; Lawton & Nahemow, 1973, Lamure, 1976; Lawton, 1982; Steinfeld & Danford, 1999; Scheidt & Norris-Baker, 2004; Laurìa, 2017b) in the attempt to adapt it to their changing needs.

A well-known theoretical instrument to analyse the person-environment relationships is the Lawton and Nahemow's (1973) *ecological model* and the accompanying *environmental docility hypothesis* (Lawton and Simon, 1968) (both developed in gerontology) focused on the interaction between "individual competence" and "environmental press". Their essence is that as competence declines, the person is less able to address environmental press. Competence is defined as the aggregate of the person's abilities; environmental press is interpreted in positive or negative terms based on reciprocal action or influence with the person. Competence, like environmental press, can change over time.

The environment not only defines to what extent an impairment is *disabling* (see, *inter alia*, WHO, 2001, all. 4; Gray, Gould & Bickenbach, 2003; Oliver, 2004; Traustadóttir, 2009), but also the degree to which a certain solution for increasing accessibility is *enabling* (Laurìa, 2014a). For this reason, the assessment of each disabled person's profile must combine traditional medical diagnosis with the features of the physical and social environment in which the person in question lives (see Mace, Hardie & Placie, 1991).5

Sacks (1995: XX) mentions that the great french neurologist François Lhermitte "instead of just observing his patients in the clinic, makes a point of visiting them at home, taking them to restaurants or theatres, or for rides in his car, sharing their lives as much as possible."

In the process of *disabled person-environment fit*, the configuration (in terms of morphology and dimension) of spaces – as already mentioned – plays a very important role.6 Comparing similar functional and other existential and social condition limitations, the more accessible the living environment, the greater the capacity of the person to self-determine their

5 See § 2.2.

6 Inaccessibility of environments is one of the most extensive discriminations suffered by disabled persons. In 1982, a report by the UK's *Committee on Restrictions against Disabled People* (CORAD) highlighted how for many disabled persons, the difficulty of access represented "the fundamental cause and manifestation of discrimination." (CORAD, 1982: 9). Cf. Barnes (1991: 173).

own existence. This suggests that introducing modifications to the living environment that can grow the *degree of accessibility*, will lead to positive effects on the well-being of the person, on their capacity to develop their own *life project* and to participate in a direct and personal manner in collective life and the development of society. When a living environment is not adequate, it not only prevents or impedes performance of activities, but also conditions the conformation of the true "I" of the human being, the constitution of their personality.7 For example, a young disabled man chooses a course not based on his capacities and aspirations, but on the degree of accessibility to places and services, his freedom and life project are irreparably compromised.

The *living environment* is strongly influenced by the social structure in which a person lives their existence (family, community and society). Brandt & Pope (1997) described the environment as an entity in support of the person, as a sort of three-dimensional mat with social factors on one side and physical factors on the other. The capacity of the environment to support people's lives adequately (expressed in the metaphor by the flexibility of the mat) depends on the one hand on its physical accessibility and on the other on the efficiency of the social support network available (Fig. 2).

Figure 2 – Disability as displacement of the "environmental mat." The amount of displacement represents the amount of disability experienced by the individual; it is a function of the strength of the physical and social environments that support an individual and the magnitude of the potentially disabling condition. [Adapted from Brandt & Pope, 1997]

7 Ortega y Gasset's well-known phrase "Yo soy yo y mi circunstancia" (Ortega y Gasset, 1914), underscores reciprocal influences, the entangled mesh of relationships between the person and their living environment. As Ortega y Gasset says, the human personality is not an independent reality but exists only in relationship to the surrounding world and the objects and relationships constituting it.

#### 1.3 On the Recent Evolution of the Concept of Disability

In the 1970s, thanks to the commitment of disability organisations, the concept of disability experienced an important theoretical adjustment.8 Harsh criticism of the "medical model" of disability, which focuses on physical, sensory and cognitive limitations of the disabled person and therefore on the assumption that they are "ill" and must be cured and rehabilitated (Barnes, 2011; ENIL *et al*., 2015) led to the "social model"9 of disability (WHO & WB, 2011), which focuses instead on the economic, social and environmental barriers they encounter.

The social model of disability has its roots in the text *Fundamental Principles of Disability* (UPIAS & DA, 1976), which contains the results of a meeting between activists of the *Union of the Physically Impaired Against Segregation* and the activists of the *Disability Alliance*. The text maintains that disability is not caused by the bodies of the disabled persons but by society: disability is defined as a form of "social oppression" equal to that suffered by women, ethnic minorities and homosexuals.

A crucial role in overcoming the medical model of disability was played by the World Health Organization through the ICF (WHO, 2001), which proposed a fusion of the medical and the social disability model (Barnes, 2011), defined the "biopsychosocial model."

The biopsychosocial model of disability principles can be summed up as follows (WHO & WB, 2011):

8 For a critical analysis of the historical evolution of the concept of disability and of how to understand the disabled, see Canevaro & Goussot (2000); Ryan & Thomas (1987); Barnes (1997); Stiker (1999).

Thus, the biopsychosocial model defines disability as the result of a complex and dynamic relationship between a person's *state of health* and the *individual's contextual factors*. The latter can be of both a *personal* and an *environmental* nature.

*Personal factors* include the individual's personal background and other characteristics unconnected to their state of health: gender, ethnic origin, age, physical condition, lifestyle, habits, education level, capacity to adapt, social background, training, profession, past and current experiences, general behaviour models, character traits. *Personal factors* can influence a person's participation in society and can have a negative or positive impact on a disabled person's living conditions. These, however, are not yet classified by the ICF. *Environmental factors* are related to the physical and social environment in which the person lives; they are classified in two levels: individual and social. The *individual* level, namely the personal environment of the individual (for example home, workplace and school), includes the physical and material features of the environment in which the individual performs their activities and in which they enter into direct contact with others (for example relatives, acquaintances and strangers). The *social* level, which is to say the formal and informal structures, services and interactions with the community or with society having an impact on people include organisations and services linked to the work environment, community activities, institutional services, communication and transport services, formal and informal networks, laws and regulations, behaviours and ideologies (WHO, 2001).

Today, the biopsychosocial model is universally accepted and promoted by the main international organisations, beginning with the United Nations

11 In the European Union, the rate of poverty among disabled persons is 70% higher than average (EUROSTAT, n.d., as quoted by the European Commission, 2010) rates and this is due in part to the limited access the disabled have to employment (European Commission, 2010).

through the CRPD (UN, 2006). Referring to the ICF, the CRPD recognises that disability is not an attribute of the person; it is the result of an interaction "[…] between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others." (UN, 2006: preamble, letter "E").12

#### 1.4 Autonomy and Independence

The terms "autonomy" and "independence", often used as synonyms, are actually slightly different. They are intricate concepts influenced by the context of reference.

The noun "autonomy" derives from the Greek αὐτονομία, from αὐτόνομος (autónomos), "having its own laws", composed by αὐτο (*autos*, self) and νόμος (*nòmos*, law). Autonomy is, therefore, "the right or condition of self-government […] of a State, community, institution, etc.", or else "the freedom of the will." (Brown, 1993).

The term "independence" derives from the adjective "independent", partly on the pattern of the French *indépendant*, composed by "in", negation, and "dependent". Independence is therefore the condition of what is independent, in other words, "not dependent or contingent on something else for its existence, validity, effectiveness, etc.", "not influenced or affected by others", "not influenced by others in one's opinion or conduct", "thinking or acting for oneself." (Brown, 1993).

Whenever "autonomy" is used in the broad sense, the terms tend to assume the same meaning. For example, among the various meanings of "autonomy", Brown (1993) includes "independence", "freedom from external control or influence", "personal liberty"; in the same way, Sinclair (1992) defines "autonomy" as "the ability to make your own decisions about what to do rather than being influenced by someone else or told what to do".

Moreover, in literature about disability, a subtle difference emerges between the two concepts: "autonomy" is generally used in reference to the personal capacity for self-management, in other words to "govern" oneself; sometimes the term slides into the concept of "independence", in the sense of the capacity to express wishes and take decisions regarding one's own life without external restrictions. Reindal (1999: 354) underlines the fact that the notion of autonomy, initially used in the political field to indicate independence from foreign domination or from tyranny, is still interpreted today as "independence and the ability to govern oneself without outside domination". Northway (2011: 80) understands autonomy as "something which

12 The CRPD has so far (2018) been ratified by 175 countries, whereas 92 countries, including Italy (2009), have ratified both the Convention and the Optional Protocol.

is fundamental to independence and choice", in other words as a prerequisite for independence.

The following pages describe aspects of "personal autonomy" and "independent living" concepts.

#### 1.4.1 Personal Autonomy

The sphere of *personal autonomy*13 includes all the abilities required for activities that fulfil the personal needs of the individual who wishes to be a fully-fledged member of society. These abilities include, for example, personal hygiene, dressing, feeding oneself, domestic chores, and leisure (D'Alonzo, 2003).

The meaning of personal autonomy, however, transcends the merely "material" aspect linked to the execution of activities – namely doing – and contributes to the construction of the individual's identity. Personal autonomy therefore plays a fundamental role in the life of every human being.

Personal autonomy is a subjective resource assuming traits and meanings that change according to the individual's physical condition, as well as personal factors such as age, state of health, level of education, cultural background, etc. It is evident, for example, that the concept of personal autonomy assumes a different meaning when referring to a disabled rather than a non-disabled person. Indeed, the presence of a disability can greatly compromise personal autonomy, limiting or even impeding the performance of certain activities and the achievement of a life project. Even if referring only to the disabled person, there are significant differences in terms of personal autonomy among people with various types of functional limitations, ranging someone with cognitive problems to someone with physical or sensory issues (Reindal, 1999; Laurìa, 2016a).14

Moreover, the time when the disability occurs has a defining impact on the person and their autonomy as its limitation may emerge from childhood, or suddenly, or gradually, or later in life. All with a completely different effect on a person's life.

Above all, when a disability is severe and the person's capacity to carry out certain activities on their own is non-existent, the actions of the family and social support network take on a central role, in particular those undertaken by the caregiver (Meininger, 2001). Autonomy, indeed, "does not necessarily mean 'doing things without help', nor is it restricted to persons with full cognitive ability. Persons who are dependent on others in various

13 For the term "personal autonomy" see also the Introduction. 14 In this respect, Meininger (2001) observes how in the presence of serious cognitive disabilities the concept of autonomy – understood as the capacity for self-determination – may be difficult to define, since the ability to develop plans, understand the consequences of one's own choices, and ultimately to choose, can be greatly compromised.

BASIC CONCEPTS

aspects of life due to intellectual impairment, cognitive limitations, frailty, disease, or simply ageing or childhood, can achieve autonomy with respect to their expectations and environment" (EUSTAT, 1999: 22).

Autonomy can also be interpreted as a complex result of human relationships, namely reciprocal interactions between one person and others. This is valid for everyone, regardless of their health condition or functional limitations; in fact, no human being can be considered completely "autonomous" since everyone acts in a condition of *interdependence* with others to varying degrees (Agich, 1993; Northway, 2011).15 From this perspective, personal autonomy is also the result of the relationship between *care receiver* and *caregiver* (Meininger, 2001).

Beyond the aspects linked to the individual and to the family and social environment, the physical environment also has an effect on personal autonomy. It is the physical environment that actually fosters or hinders the person-environment fit process. As stated in the Introduction, since the disabled person has a lesser capacity than the non-disabled to adapt to the physical environment, then this must adapt to their needs and expectations. This is particularly important in the case of severe disabilities.

#### 1.4.2 Personal Autonomy Assessment Methods

Several methods have been established in the health sector for assessing the autonomy of frail and disabled persons in performing certain everyday activities. The methods available today are not specifically related to the physical environment in which the activities take place.

There follows a brief overview of the following assessment scales:

The *Barthel Index* (BI) is used for measuring a disabled person's level of self-sufficiency in carrying out ten everyday activities: (1) feeding, (2) chair/ bed transfers, (3) personal hygiene, (4) toilet, (5) bathing self, (6) ambulation (or wheelchair), (7) stair climbing, (8) dressing, (9) bowel control, and (10) bladder control. Each activity is scored to quantify the level of self-sufficiency in conducting it and the total gives an overall score of 0 (total dependence) to 100 (total independence) (Mahoney & Barthel, 1965; Shah, Vaclay & Cooper, 1989).

15 On the concept of "interdependence" see also § 1.4.3.

The *Impact on Participation and Autonomy* (IPA) measures the disabled person's degree of autonomy and participation in everyday life. It is measured by filling out a form of closed questions regarding the following topics: (1) autonomy indoors, (2) family role, (3) autonomy outdoors, (4) social life and relationships, and (5) work and education. The scores for each question varies from 0 (very good) to 5 (very poor). The questionnaire also investigates to what degree possible limitations to self-determination are seen as problematic when making choices. In other words, when having to decide the manner, time and place for performing specific activities. For this purpose, additional questions address the following issues: mobility (getting around where and when you want); self-care; activities in and around the home; looking after your money; leisure; social life and relationships; helping and supporting other people; paid or voluntary work; education and training (Kersten, 2007; Hammar *et al*., 2014).

The *Functional Independence Measure* (FIM) assesses self-sufficiency separately from the origin of the disability and the specialised skills required for assessment. The FIM is based on an international standard for measuring disability that analyses the person's need for assistance in connection to eighteen everyday activities, divided into six sectors: (1) self-care (eating, grooming, bathing, dressing upper body, dressing lower body, toileting); (2) sphincter control (bladder management, bowel management); (3) transfer (bed-chair-wheelchair, toilet, tub or shower); (4) locomotion (walk/wheelchair, stairs); (5) communication (comprehension, expression); (6) social cognition (social interaction, problem solving, memory). Every activity is scored from 1 (complete dependence) to 7 (complete independence) and the total score can therefore vary between 18 and 126 (Ottenbacher *et al*., 1996).

The *Activities of Daily Living* (ADLs) include everyday aspects like bathing, dressing, using the toilet, transferring (e.g.: from bed to chair), continence, feeding (Katz *et al*., 1963; Katz, 1983; Dunlop, Hughes & Manheim, 1997). The *Instrumental Activities of Daily Living* (IADLs), on the other hand, are everyday activities that require the use of instruments or devices, including use the telephone; shop; handle money; cook meals; perform housework; do laundry; manage transportation; take medications (Lawton & Brody, 1969; Levine *et al*., 2004). There are several versions of scales that use the ADLs and the IADLS. Generally, 1 point is assigned for each activity carried out autonomously. The overall ADLs and IADLs scores vary from 0 (complete dependence) to 6 (for ADLs) or 8 (for IADLs) (complete independence in all functions).

#### 1.4.3 Independent Living

There are many definitions of "Independent Living" in available literature (see, *inter alia*, Townsley *et al*., 2010; ENIL *et al*., 2015). According to the UK's Disability Rights Commission (2002) the expression refers to the

BASIC CONCEPTS

fact that the disabled, like all other citizens, are entitled to choose and control, and to enjoy the same freedom, at home, at work and as members of the community. Independent Living does not necessarily imply a condition of self-sufficiency: when necessary, disabled persons will receive care and practical support. The fundamental aspect is that every form of care and support must be based on the individual *choices* and *aspirations* of those who will benefit from them (DRC, 2002, as cited by ENIL *et al*., 2015).

As also explained by Reindal (1999), in Independent Living literature, the concept of "independence" is based on the concept of "control", understood as the ability to manage one's own life, making choices and taking decisions, even when the material execution of certain physical or intellectual activities are delegated to other people. Independent Living is not so much linked to the individual capacity to carry out a certain activity, but to the capacity to obtain assistance *when* and *how* desired.

In the words of Adolf Ratzka, director of the Independent Living Institute of Stockholm, "Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, work in jobs that are in line with our education and interests, and start families of our own. Since we are the best experts on our needs, we need to show the solutions we want, need to be in charge of our lives, think and speak for ourselves – just as everybody else. To this end we must support and learn from each other, organise ourselves and work for political changes that lead to the legal protection of our human and civil rights. We are profoundly ordinary people sharing the same need to feel included, recognized and loved. As long as we regard our disabilities as tragedies, we will be pitied. As long as we feel ashamed of who we are, our lives will be regarded as useless. As long as we remain silent, we will be told by others what to do."16

Clearly, the concept of Independent Living is applicable to everyone as all human beings have the right to decide with regard to their own life. Disabled persons, however, encounter many obstacles to the fulfilment of that right, and this limits their freedom to exercise additional rights like housing, education, care, employment. The concept of Independent living is therefore closely connected to the citizen's rights of disabled persons. (ENIL, 1989; Zarb, 2004; Ratzka, 2007; Nussbaum, 2011; Belli, 2014; ENIL *et al*., 2015).17

16 From the website <http://www.independentliving.org/> (last access: 01/2019).

17 In the Strasbourg Resolutions, adopted in 1989 during the first *European Independent Living Conference*, it was affirmed that: "We, disabled people, recognising our unique expertise, derived from our experience, must take the initiative in the planning of policies that directly affect us. To this end we condemn segregation and institutionalization, which are a direct violation of our human rights […]

The right of disabled persons to Independent Living was established at international level by the CRPD, which recognises "the importance for persons with disabilities of their individual autonomy and independence, including the freedom to make their own choices" (UN, 2006: preamble, letter "N"), and in particular "the equal right of all persons with disabilities to live in the community, with choices equal to others". For this reason, "effective and appropriate measures" must be adopted "to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community." (UN, 2006: art. 19).18

If the right to Independent Living is not to remain a mere aspiration, a series of conditions must be fulfilled to foster its implementation. First of all, a deep cultural change in society leading to a different approach to disability (Ratzka, 1989; Zarb, 2004; Ratzka, 2007; Belli, 2014; ENIL, 2014; ENIL *et al*., 2015). In line with the social model of disability – representing the theoretical foundation of Independent living – some scholars underline the fact that even today a disabled person's aspiration to independence is often compromised by hyper-protective or negative discriminatory attitudes toward them.19 The widespread perception of the disabled as "vulnerable" and "frail" feeds a sort of "culture of dependency" which considers them passive subjects of assistance and care, exempted from responsibility. If this cultural conditioning were to be overcome, it might contribute to spreading a perception of disabled persons as citizens capable of a positive and active contribution to the construction of society (Zarb, 2004; Ratzka, 2007).

On a political level it is necessary to implement coordinated strategies within the various sectors involved (for example economy, education, construction, transportation, labour, social policies, etc.) and aiming to remove obstacles to a full social participation by disabled persons (ENIL *et al*., 2015). At the basis of each action there should be the recognition of the various needs and solutions connected to the fulfilment of the objective of independence. In this respect it may be worth mentioning the operational

We firmly uphold our basic human right to full and equal participation in society […] and consider that a key prerequisite to this civil right is through Independent Living and the provision of support such as personal assistant services for those who need them." (ENIL, 1989).

framework for support to people with disabilities, based on "seven needs for independent living", identified by the *Derbyshire Centre for Integrated Living* (DCIL) in 1985 (Davis, 1990; Barnes, 2011): (1) Information; (2) Peer counselling and support; (3) Accessible housing; (4) Technical aids and equipment; (5) Personal assistance; (6) Accessible transport; (7) Access to the built environment.

In particular, the issue of housing is central to the right to Independent Living. As already stated above, exercising this right explicitly considers the freedom to choose where to live, with whom to live, and with what form of assistance. This means that if they so desire, disabled persons should be given their own dwelling place within their own community (ENIL, 2014). In the view of the Independent Living Movement, independently of the level of assistance they need, all disabled persons should live in their own home, adequately supported and assisted (ENIL, 2014; ENIL *et al*., 2015).

Many authors (Ratzka, 1989; Zarb, 2004; Ratzka, 2007; ENIL, 2014; ENIL *et al*., 2015) note the need for a gradual social and political process aiming to overcome the system of special services "dedicated" to the disabled, including transport and education.20 This approach points out that residential care facilities for the disabled contributes to their segregation and discrimination, due to two main reasons: (1) the separation of the disabled from their family and social support networks, therefore depriving them of important emotional support, and (2) standardised services offered seldom meet the needs of each individual. Literature shows that disabled persons must have access, at appropriate costs, to barrier-free private housing with adequate accessibility and with all the rights available to other citizens: social housing rent, private rental, housing cooperative, private property (ENIL *et al*., 2015). The removal of "dedicated" structures and services should be flanked with implementation of accessible communitybased services (transport, healthcare, culture, leisure, etc.), adequate for the needs of the disabled who could then make use of them near to their homes, just like other citizens (Ratzka, 2007; Laurìa, 2012a; ENIL, 2014; ENIL *et al*., 2015).

20 Regarding education, in Italy a fundamental stage in the evolution of the regulation concerning the integration of disabled students is represented by Law 517/1977 as subsequently amended and supplemented. The law establishes the abolition of special classrooms, the integration of disabled students in regular classrooms and the introduction in elementary (Art. 2) and middle (Art. 7) schools of special educational needs teachers with the purpose of providing support and carrying out special complementary educational activities for the benefit of disabled students. Law 104/1992, as subsequently amended and supplemented (Articles 12 and 13), reaffirms the right to education and training of disabled persons in schools and universities, and the interventions necessary for the integration in schools of disabled students are defined, with the aim of developing their potential for learning, communication, relationships, and social interaction.

Regarding the housing needs of disabled persons, Racino *et al.* (1993) identified four key principles: (1) all individuals need housing; (2) housing should be based on individual needs and preferences; (3) public services provided in the various areas of a city should take into consideration the needs of individuals; (4) adequate support should be provided for people to allow them to live in an integrated, and highly personalised housing situation. With respect to the option of having a person with severe disability living in their own home instead of in residential care facilities for the disabled, O'Brien (1994) highlights how it is fundamental to consider the three main aspects of living: (1) the possibility of experiencing a *sense of place* (for example, giving a personal touch to the home, taking care of domestic chores, providing the necessary improvements and repairs to the home, being able to grow vegetables, offering hospitality to friends, neighbours and strangers); (2) the possibility of having *control* (personally or with assistance) of the home and the necessary support for living in it (for example, deciding where and with whom to live and managing one's own money); (3) the possibility of experiencing *security of place*, assuming in a direct way the role of owner or tenant of the dwelling.

A peculiar aspect of Independent Living regards the concept of assistance to disabled persons, so they can perform everyday activities. As previously mentioned, the notion of "independence" does not imply a condition of selfsufficiency in the execution of specific activities, so it is necessary to set aside the approach based on a dependence-independence distinction, since *vulnerability* and *interdependence* are conditions affecting everyone, not just disabled people (Reindal, 1999; ENIL, 2014; ENIL *et al*., 2015).

Ratzka (1989) dwells on the concept of *interdependence,* or reciprocal dependence among people whereby an individual uses the knowledge and skills of other people daily to compensate for their own lack of ability or lack of time to undertake certain activities. For example, everyone calls upon artisans or professionals to undertake jobs they are unable to do themselves, or which would require too much time, like repairing a tap or a car. We delegate specific tasks to others, so we have the time and energy we need for other activities: work, social relations, leisure. In other cases, we need the emotional support of relatives or friends (for example to make an important decision), or of their material help for especially demanding tasks, like taking care of small children (see ENIL, 2014).

While some disabled persons are sufficiently autonomous at a personal level to deal with everyday activities linked to primary needs like eating, getting dressed, personal hygiene, etc., the time and commitment required for these tasks can be such that other activities (working, for instance, or a social life, or political activities) are then reduced or hindered. In these cases, the support of others can be fundamental to reduce the time and energy the disabled person invests in taking care of themselves and leaves them free to engage in activities considered more satisfying and significant for their life project (Ratzka, 1989).

When clearly required, care may allow every disabled person to "compensate" an impairment by delegating to others the execution of physical or intellectual tasks they are partially or completely incapable of undertaking alone (Ratzka, 1989).

The most widespread form of care is that provided voluntarily by relatives living with the disabled person, and who often make enormous physical, emotional and economic sacrifices.21 According to Independent Living Movement activists, however, it is fundamental to ensure that the disabled persons who request a paid *personal assistance* service should receive it. The term "personal" refers both to the role of the disabled person, who must decide the manner, time and place of the assistance provided, and to the fact that the service must be extensively personalised to respond to individual needs (Ratzka, 1989).

This type of support should be available in various forms, according to the level and type of care needed. It can be a service provided occasionally, or at specific times of day, or continuously throughout the day. Service providers can also be of different types: the disabled person should be offered the chance to request staff from outside the family circle or to appoint one or more family members to be the caregivers (ENIL, 1989). In any case, the relationship between *caregiver* and *care receiver* should always be based on the principle of the choice of the disabled person, who should always have the possibility to manage caregiving activities directly, and if necessary to train the caregiver, deciding the activities to be delegated, choosing places, times and specific methods of assistance (Belli, 2014; ENIL, 2014; ENIL *et al.* 2015).

Care should take into account the wishes, aspirations and lifestyle choices of the disabled person, so as to allow them direct involvement in every aspect of life. For this reason, care should not focus only on activities linked to primary needs (such as eating, personal hygiene and grooming), but must offer the disabled a chance to engage in family and social life, and when requested provide support at school and work, and during leisure and travel (ENIL, 1989; Zarb, 2004; Belli, 2014; ENIL, 2014).

#### 1.5 Autonomy at Home

When we speak of autonomy, one of the most important areas of focus is the home environment, which plays a vital role in the human experience and is the core of a significant part of everyday activities. Increasing autonomy at home for the disabled person not only means obtaining positive effects for individuals and their families, but also saving resources for the community in terms of social and healthcare costs, in particular by preventing the risk of injury and the need to move disabled persons to care homes.

21 On the subject of the subjective care burden experienced by caregivers, in particular concerning the *Caregiver Burden Inventory* (CBI) (Novak & Guest, 1989), see § 2.3.

The importance of autonomy at home is evident when considering that an essential part of a person's daily activities is based there.22

In general terms autonomy at home is not always to be understood in the strictest sense, namely the capacity to undertake domestic activities without the assistance or support of others. For some disabled persons, as already mentioned, such a goal may be entirely or partially impossible. Therefore, autonomy at home should be conceived as a disabled person's prospects or inclination for making their own choices regarding the manner, time and instruments for undertaking activities at home, rather than the capacity to carry out such activities unaided.

Autonomy at home is deeply influenced by subjective elements of a physical, sensory, cognitive, psychological, proxemic and relational nature, and is not a univocally recognised value. A disabled person does not always think increased autonomy in the home environment is necessary; this can also be true for the members of their family nucleus.

Vaičekauskaitė (2007) studied the role of the parents of disabled children, examining their attitude to developing autonomy in their offspring. Lewis (1986) and Hovey (1993) analysed the tendency of some parents of disabled children to postpone or fail to implement the modifications needed to make their children's rooms more accessible, and the deep underlying psychological motivations for this. Anyone promoting autonomy at home for the disabled should be aware of the complex psychological dynamics that may impede it.

Vaičekauskaitė's study (2007) focuses on the development of autonomy in disabled children from the perspective of parents and on the repercussions of the increase in autonomy in the participation of disabled children in social life. It has emerged that most parents interviewed connected the concept of autonomy to a state of good health and lack of disability, so many parents tended to point out the differences between their children and non-disabled. Research showed that parents would have benefited from adequate support to promote the development of their child's autonomy. The role of social workers and, when applicable, of professional caregivers, in providing support to disabled children for performing everyday activities also appeared fundamental for contributing to development of their level of autonomy. Lewis's work (1986) highlighted two main causes for parents of disabled children postponing actions for making their rooms accessible. The first was due to practical difficulties such as the lack of time and economic resources for converting the home; inefficient public services; lack of awareness in medical personnel of the issue of architectural barriers at home and their impact on the quality of family life. The second cause was often linked to the parents' subconscious reactions. First of all, the conflict between the

wish to have their "dream home" (often corresponding to the stereotype image of their childhood home) and the functional requirements of the child,

which require modifications to the home. Then the reluctance to adapt the

22 See Introduction.

BASIC CONCEPTS

dwelling due to their inability to accept the permanent nature of the child's disability. Finally, the wish to distance the family from the "stigma of disability", made even more evident in the event of visible modifications to the exterior of the home.

Hovey's research (1993) confirmed that housing adaptations are often refused by families when they represent the explicit avowal of their child's disability. One family interviewed for the research said that building ramps to improve their son's mobility would be an obvious declaration of the fact that there was a disabled person in the family. The gender and age at which the disability appeared in the child also had an influence on choices, with a greater tendency to carry out modifications in the case of male and older subjects, with the purpose of maintaining a certain degree of autonomy.

Autonomy at home has a profound effect on a person's well-being and the quality of life. For example, in the case of traumatic events or illnesses which occur at some point in a person's life and generate a condition of disability, the recovery of autonomy at home through rehabilitation can be understood as the individual's capacity for returning to what matters for them or what they need in daily life (Arenghi, Cretti & Scarazzato, 2015). It is also evident that an increase in a disabled person's autonomy at home represents a benefit for the entire family nucleus and for any external caregiver present (Cook *et al*., 1996).

Interventions aimed at fostering autonomy at home for disabled persons and the care and assistance provided by their caregivers can be designed as preventive strategies that avoid or at least delay the institutionalisation namely relocation to care homes, of those with disabilities.23 These interventions, insofar as they offer the freedom to choose whether to remain in one's own home or to move to a care facility, can also be seen as a way to augment individual capabilities.24

Autonomy at home depends mainly on three factors, which influence each other reciprocally and dynamically (Fig. 3):

23 Ratzka (1984), describing the Swedish context, estimated that through adequate adaptations to the homes of the disabled, it would be possible to avoid up to 40% of transfers to care homes, with significant financial savings.

24 In Capability Approach language, living in a care home and living in one's own home represent two *functionings.* The possibility of choosing between these two functionings is, instead, a *capability.* "Functionings", as Sen (1993: 31) writes, "represent parts of the state of a person – in particular the various things that he or she manages to do or be in leading a life. The capability of a person reflects the alternative combinations of functionings the person can achieve, and from which he or she can choose one collection." See also Nussbaum (2011: 25).

By intervening in an integrated manner on these three factors, the person's level of autonomy at home can be increased.

Figure 3 – The three dimensions of autonomy at home.

Of the interventions conceived for the disabled person, the following are particularly significant: (1) adoption of appropriate assistive products aiming to enhance the person's functional performance through the use of specific person-environment "interfaces" (for example, a wheelchair); (2) rehabilitation interventions carried out by specialised personnel; (3) initiatives for the promotion of long-term independent living processes (for example, autonomy at home courses for the blind and the partially sighted). Education for autonomy is an important issue especially in the area of initiatives for disabled children and teenagers, since it provides them with the tools for learning personal autonomy, behavioural and motor skills, assisting them in the process of social inclusion for that stage of their lives when their parents will no longer be able to offer them the necessary support and later, when they die. Whenever required, support initiatives may be implemented, for example by introducing or reinforcing assistance services provided by external figures. As already mentioned, assistance in some cases may help not only in the material execution of specific everyday activities, but also contribute to the fulfilment of personal aims and aspirations.

An efficient *family and social support network* can play a positive role in the disabled person's autonomy at home and in this respect, actions involving relatives and other individuals who provide support to the disabled (for example, professional caregivers, neighbours or acquaintances) can be very fruitful. Moreover, it may sometimes be useful to initiate actions that aim grow the disabled person's social network, for example by promoting participation in groups and associations that organise sports, and cultural, political or volunteer activities, or even through use of digital technologies. For example, by providing appropriate information technology devices – supported by specific training courses – for long-distance multimedia communication (e.g., chat, email, social networks, etc.).

With respect to actions relevant to the *physical environment*, many studies underline the impact of the role of the environment's physical configuration on how everyday activities are undertaken and, consequently, on the level of autonomy at home (see, *inter alia*, Lawton & Nahemow, 1973; Steinfeld *et al*., 1979; Lawton, 1982; Steinfeld & Danford, 1999; Fänge & Iwarsson, 2005; 2007; Petersson *et al*., 2009; WHO & WB, 2011).25 In this respect, it is worth mentioning a research project by Cook *et al*. (1996) that analysed the role of the home environment in the cognitive development of disabled children. The study highlights how the distribution of rooms, furniture, equipment, objects, device controls, room lighting, surface finishes, colour, temperature, etc., influence how activities are performed, facilitating some and limiting others. This research is significant since it clarifies how the quality of interaction with the environment can affect a disabled person's capacity for selfdetermination and self-esteem.

Questions regarding interventions on the physical environment for increasing the personal autonomy of disabled persons are the focus of this book and will be analysed below.

25 The *World Report on Disability* (WHO & WB, 2011: 4) states: "A person's environment has a huge impact on the experience and extent of disability. Inaccessible environments create disability by creating barriers to participation and inclusion."

## CHAPTER 2 Housing Adaptation

Housing adaptation plays a key role in improving the autonomy and independence of the disabled at home in terms of daily activities, social participation and usability of spaces. Therefore, it can be thought of as a part of the personal rehabilitation process. Moreover, adaptation help avoid injuries at home and prevent relocation of disabled people to care homes. In this way, housing adaptation policies can also contribute to cutting down social and healthcare costs. The purpose of this chapter is to describe a theoretical approach to housing adaptation tailored to the characteristics of each disabled person and the family and social network available.

#### 2.1 Introduction

The expression "housing adaptation" indicates a coordinated series of design interventions in the home of a person presenting functional limitations and aims to increase their level of autonomy when carrying out everyday activities. A collateral goal of housing adaptation is to make caregiving less stressful and healthier in the long run.

Among the strategies and criteria for housing adaptation, some are particularly important.

Firstly, since housing adaptation is part of a personal rehabilitation process (see Iwarsson & Slaug, 2010), it must aim to be as customised as possible, in other words it must be implemented in accordance with the recipient's accessibility needs and housing wishes. The personalisation of interventions requires the designer to apply a very different approach to the universal method usually applied to collective spaces (public or for public use), in order to increase the degree of accessibility.

Since housing adaptation brings to light a complex series of health factors to be considered, a second requirement is an interdisciplinary approach. To design time-efficient housing adaptations consistent with the needs of the disabled person and within the care, social and physical context where they live, the situation needs to be viewed from health, social and environmental perspectives. An interdisciplinary team must thus be set up as dialogue involving different areas of knowledge and types of experiences can help to provide the most adequate design solutions (combining different – even diverging – aspects) and reduce the risk of errors and misunderstandings which, especially in complex processes, often arise when information passes from one player to another.

The exploration of such a multifaceted reality must necessarily be carried out at the disabled person's home. Here, through discussions with the disabled person and their caregivers (formal or informal), direct observation of the physical and social environment, and the exchange of ideas between the members of the interdisciplinary team, accessibility issues and other useful data for developing design solutions are identified.

These solutions, in addition to existing regulations, must be guided by specific criteria so that the adaptations to be carried out can meet the autonomy needs of the disabled person as much as possible, but also their personal taste and the requirements of relatives and external caregivers.

#### 2.2 Personalisation

Housing adaptations must be conceived to achieve specific activities of daily life (for example, moving from one room to another, fetching objects, turning switches on and off, personal hygiene, interacting with the rest of the family, etc.). The activities considered must be consistent with the person's desires (activities that the person *wants* to carry out), with their needs (activities that the person *must* carry out), and with their personal abilities (activities that the person *can* carry out).1

Personalisation is therefore the key element in housing adaptation: it requires solutions correlated to the individual characteristics of the person (functional limitations, age, gender, health conditions, etc.) and to those of the family and social support network.

Additionally, it requires a conceptual approach and accessible design strategies which differ from those usually put in place for a collective space (places, buildings and services that are either public or for public use).

Human-centred design of collective space is usually based on *generalisation,* namely an attempt at a universal understanding of phenomena and tendencies and definition of measures and solutions of a general nature (as well as consistent with the quality of the space in question). When intervening on collective space, Universal Design (Mace, 1985; Mace, Hardie & Plaice, 1991) – which requires products, environments and services to be "usable by all people, to the greatest extent possible, without the need for adaptation or specialized design" (CUD, 1997) – represents the most popular and accepted design methodology.2 The term "universal", however, is not to be taken literally. Indeed, Universal Design solutions may reveal a wide and varied *grey area* of the population composed of individuals (e.g. people with

1 See § 5.2, Data sheet S6, Section S6.3.

2 Universal Design is the design methodology also suggested as well by the *Convention on the Rights of Persons with Disabilities* (UN, 2006), which (Art. 4, Letter F) encourages member states "To undertake or promote research and development of universally designed goods, services, equipment and facilities".

severe disabilities) requiring specific support measures and devices (Laurìa, 2012c; Arenghi, Garofolo & Laurìa, 2016; Laurìa, 2017b).3 Awareness of the impossibility (theoretical even before operational) of satisfying the needs of every person with the same efficiency through universal solutions downscales the objective of what can be reasonably achieved through accessible design of collective space: not so much aspiring to define "appropriate" solutions for each individual (which is actually impossible), but rather attempting to define "mainstream products and/or services that are accessible to, and usable by, as many people as reasonably possible on a global basis, in a wide variety of situations and to the greatest extent possible without the need for special adaptation or specialised design." (BSI, 2005).

On the other hand, understanding in as much detail as possible the limits and potential of the various user groups is helpful for getting to know the world and its subtleties, not for changing it. Making collective space more accessible does not mean elevating diversity, but rather "harmonising" it. Collective spaces must be "specific" in order to satisfy specific needs but, at the same time, must *be* and *appear* "generic", so as to be adequate for the widest possible spectrum of people, thus avoiding stigmatisation and prejudice (Laurìa, 2003a) (Fig. 4).

Figure 4 – In the design of human-centred collective space, technical solutions should derive from the harmonisation/generalisation of the needs and expectations of each User Group (UG) in view of contextual factors (climatic, architectural, cultural, historical, regulatory, and so on).

However, when operating in the home environment, generalisations should be set aside for a different approach striving to understand and

3 CRPD specifies that Universal Design does "not exclude assistive devices for particular groups of persons with disabilities where this is needed" (UN, 2006: art. 2). Some universally oriented solutions, such as "stramps" (a combination of stairs and ramp) or shared spaces, for example, generate severe issues for people with eyesight problems (see Parkin & Smithies, 2012; Imrie, 2013; Laurìa, 2016a; 2017a).

alleviate accessibility problems that a *defined space* generates for a *specific person* who lives inside a *specific family* and *social context* (cf. WHO, 2001; ISO 9242-11, 2018). The principles of the ICF (WHO, 2001) and of the *capability approach,* which "takes," as Nussbaum (2011: 18) writes "*each person as an end*, asking not just about the total or average well-being but about the opportunities available to each person", can find consistent applications in home environments.

Quoting the *Mishnah* (Tractate *Sanhedrin* 4:5) for the purposes of housing adaptation design, "each person is a world", so the starting point is the analysis of a series of factors influencing well-being to obtain solutions as personalised as possible.

The uniqueness of each disabled person is perfectly expressed by paraphrasing a famous saying attributed both to Lorna Wing (for autistic persons) and to Tom Kitwood (for dementia patients): "When you've met one person with disability, you've met one person with disability".

Since the home environment emphasizes the *relative nature* of the concept of accessibility, in housing adaptation the same accessibility standards – designed to meet general needs – are not always a goal towards which to strive.

Housing adaptation demands a way of reading and interpreting the habitat which – compared to the challenges arising in conversion of public space – could appear as much simpler and "solider" as they are able to rely on a needs framework that is more easily definable and on more limited and verifiable context data.

Indeed, when speaking about people with severe disabilities this is not the case. Interventions to the homes of the severely disabled require designers or researchers to have specific expertise and skills. First of all, they must be able to listen and have above average empathy. Connecting with the severely disabled and their families, listening to their personal stories, often overflowing with suffering, loneliness, and frustrated expectations, trying to identify with their needs, understanding their life project, can be very difficult and intense, including from an emotional standpoint. It also requires refined judgement skills: two people with the same type of functional limitation may actually have completely different aspirations (as a simple example, one might want to live alone and the other might prefer to stay with their family)4 and this has obvious implications in terms of design strategies for adapting homes. Furthermore, these aspirations vary with time, as perspective changes as it does for everybody: new work opportunities, changes in the affective sphere and in health, etc. Research conducted

4 In Italy, ISTAT surveys (2014) highlighted how difficult it is for the disabled to leave their family context. If 53% of non-disabled persons aged 6-44 live with their parents, the percentage rises to 72% in the case of disabled persons in the same age group.

by Dunn (1987, as cited by Zola, 1989) into a New York City programme (Project Open House) to upgrade the homes of the disabled showed that only two years after interventions were completed, the needs of approximately 40% of these disabled persons had changed. Nonetheless, it is necessary to try to understand the influence of the family and social contexts, and their role in defining solutions (spatial, medical, care, etc.) to address problems. For example, it is necessary to analyse factors such as poverty, loneliness,5 health conditions, lack of care, the difficulty in learning what rights they have and exercising them, etc.),6 that are governed by complex and changing mechanisms,7 and if they interact, they may damage the quality of life of the disabled person and the working conditions of caregivers.

Indeed, the role played by caregivers highlights an aspect that adds further complexity. Under some circumstances (for example, people with severe intellective and/or verbal communication problems),8 suggested "possible" adaptations are not so much aimed to expand the margins of disabled autonomy in material execution of certain activities at home, but rather at making the work of caregivers more comfortable, safe and efficient. This observation can be interpreted in two ways. On the one hand it proves that the concept of autonomy does not necessarily imply selfsufficiency but represents an aspect of the attitude of the person toward controlling their own life, to request assistance when needed and desired (Ratzka, 1989; Reindal, 1999).9 On the other, it would seem to suggest a certain hierarchic subordination of the concept of "autonomy" vis-à-vis that of "well-being", in the sense given to it by Sen (1993), of "what a person can do or can be" in relation to their capacity for transforming available means and resources into objectives (see Biggeri & Chiappero Martinetti, 2010). In any case, the concept of autonomy thus defined (to say nothing of well-being) is not consumed in the two-way relationship between the

9 See § 1.4.3.

person and the environment but is open to additional components. Since the caregiver is a *resource* (often essential) for a disabled person, the aim of housing adaptation, when necessary or possible, must address not so much the relationship between the *disabled person* and *environment* as between the *disabled person-caregiver* and *environment* combination. To factor the caregiver into the reading of the housing context means considering their problems as well, and the stress (objective, psychological, physical, social, emotional) they endure.10 In this respect, it is necessary to consider two additional aspects that can influence both the acquisition of information and the answer in terms of design. First of all, the caregiver may or may not be a family member, a friend or enjoy an affective relationship with the disabled person. In other words, they may be a relative, cohabitant, neighbour or friend of the disabled person, or they may be a paid or volunteer outsider providing care and assistance. Secondly, it is important to note that the presence of a severely disabled person in a family nucleus conditions the existence of every other member. As a consequence, family care is often a combined effort with each member offering support to the affected relative with levels of commitment and intensity that can vary enormously (Fig. 5).

In conclusion, it must be acknowledged that each will for living conditions, needs, and what they expect from the processes for transformation of their habitat, and more generally, as a consequence of their aspirations. Consequently, housing adaptation becomes a "complex" activity that requires a holistic approach (see Hamilton, 1981; Oswald *et al*., 2007). Every intervention may have different aspects and follow different paths depending on the specific details of the inter-relationship between the disabled person (and their caregiver, when appropriate) and the physical, family and social environment in which they live. It would be naive to believe this activity could be relegated to a merely "technical" dimension. More specifically, it could be said that although the "design solution" is inevitably "technical", the research that underlies it, nourishes it, must necessarily be based on a kind of Humanism rooted in the philosophy of Protagoras of

10 As far as the figure of the caregiver is concerned, it is worth mentioning the *Caregiver Burden Inventory* (CBI), a research tool that aims to assess the subjective care-related burden experienced by the caregiver (Novak & Guest, 1989). The CBI is a multiple-choice questionnaire filled out by the caregiver, which explores five different dimensions of the care-related burden: (1) *time-dependence burden*, which regards the time the caregiver must devote to the person in their care; (2) *developmental burden*, related to the sense of failure experienced by the caregiver, relative to their own expectations and hopes; (3) *physical burden*, which is related to the caregiver's physical stress and to their perception of their own state of health; (4) *social burden*, which refers to the presence of role-related conflicts of the caregiver in their work and family spheres; (5) *emotional burden*, which concerns the negative feelings the caregiver experiences vis-à-vis the care receiver.

Abdera, which believes that "the human being is the measure of all things" and must therefore consider the specific physical, cultural and social conditions surrounding the disabled person in their environment.

Figure 5 – In projects for adapting the homes of the severely disabled assisted by caregivers, the accessibility solutions should derive from the analysis and interpretation of the needs and expectations of the disabled person-caregiver pair in the light of environmental (EFs) and social (SFs) factors.

#### 2.3 The Interdisciplinary Nature of the Approach

Health is the result of a wide range of personal, social, economic and environmental factors (determinants)11 (WHO, 1998) and of interconnected variables. Thus, in order to attempt to overcome reductionist approaches and to recompose the singularity of a life project when assessing a person's state of health, it is vital to aim for integration of different types of knowledge and affirmation of work methods that are more consistent with human complexity (Fig. 6).

It is evident that the multidimensional character of autonomy at home (determined, as already mentioned, by the triad: personal characteristics,

11 On the determinants of health, see Maciocco (2009). For a more extensive reflection that looks at the unequal distribution of health within society (determinants of inequality in health), see WHO-CSDH (2010).

physical environment, and family and social environment) dictates the need for a *holistic approach* to the issues and for the contribution of a range of types of knowledge, in accordance with an interdisciplinary, integrated and coordinated approach. Physicians, care workers and experts in accessible design should cooperate in promotion of the person's autonomy (see Arenghi *et al.* 2015). Depending on the case under examination and on the adaptation solutions considered, the engagement of additional expertise might be necessary, including electronic engineers, neuro-psychiatrists, physiotherapists, occupational therapists, psychologists, sociologists, etc. Every professional should conduct an in-depth analysis of the specific details of the case for their own area of expertise, connecting with others while focusing on the common objective: increasing autonomy at home for the disabled person.

Figure 6 – Determinants of health. From the inner circle, which shows the person's biological characteristics (non-modifiable determinants), the diagram moves on to determinants which can be corrected and or changed (modifiable determinants). [Adapted from Dahlgren & Whitehead (1991)]

In the interdisciplinary approach a cognitive exchange takes place, whereby, as Jean Piaget wrote, the "collaboration entre disciplines diverses ou entre des secteurs hétérogènes d'une même science conduit à des interactions proprement dites, c'est‐à‐dire à une certaine réciprocité dans les échanges, telle qu'il y ait au total enrichissement mutuel." (Piaget, 1974: 167). This should offer everyone the chance to modify their initial opinion, raise awareness, reconsidering technical questions and attitudes that become axiomatic, often out of habit.

However, integrated interpretation of interaction between the disabled person and their home environment (physical, family and social) still presents a difficult challenge. It is well known that to "integrate" is always more difficult than to "separate". To negotiate one's own beliefs and to harmonise different languages is a difficult testbench and requires the various players involved to adapt in terms of values and a sincere willingness to listen. For example, it is important to overcome the obstacle of field jargon which betray the deep-rooted esoteric tradition of preferring to protect knowledge rather than disseminate and share it (Laurìa, 2008).

#### 2.4 Field Data Production

To identify the most appropriate adaptations for increasing the level of autonomy at home, an in-depth on-site assessment must be planned, to establish the characteristics of the person in their home environment, compliant with the approach proposed by the ICF (WHO, 2001). The needs and expectations of the person must be ascertained in relation to the activities compatible with their overall functional limitations.

This information should be collected through a site survey conducted by an interdisciplinary team at the disabled person's home and using appropriate methods of investigation. In particular, an in-depth analysis of the features of the physical environment must be carried out in relation to the characteristics of the disabled person, their aspirations, their family and social support network, and the activities the person can or wants to carry out at home. The study of personal characteristics must begin by collecting general information such as age, gender, type of disability (physical, sensory, cognitive, multiple), severity of the disability. The next step proceeds to identify the *needs* and *expectations* of the person and assess the *abilities* that the person has in relation to the activities to be carried out within the home environment. It is the specific task of the various professionals involved in the analysis of the needs to illustrate useful information so that the disabled person and – when applicable – their family nucleus can assess needs, identify priorities, define aims and then make the necessary decisions about the modifications to be implemented (see Cook *et al*., 1996).

During the home environment assessment stage, *accessibility issues* must be identified. These can be classified as two categories: (1) elements present that prevent or impede the carrying out of certain specific activities ("architectural barriers"); (2) elements that are absent yet could facilitate the execution of certain activities, thus contributing to enhance personal autonomy ("facilitators") (WHO, 2001; 2013; Laurìa, 2012a; 2014a). Both the presence of architectural barriers and the absence of facilitators must be analysed in connection to the functional limitations of the disabled person and the assistance they require. For example, an existing bathroom that is too small to be used comfortably by a quadriplegic person in an electric wheelchair and their caregiver is considered an architectural barrier. Conversely, a mobile hoist, still to be installed, to achieve safe transfer of the disabled person from the wheelchair into the bathtub is a facilitator.

One of the aspects worth considering from an interdisciplinary point of view is the stability of the functional clinical situation or its possible evolution (prognostic assessment). Foreseeing possible changes to the patient's health and the timeframe in which they may become manifest will make it possible to identify solutions ensuring some degree of *flexibility.*12

Furthermore, it must be kept in mind that whenever disability presents itself in adult life, the moment when the disability appears and the speed with which it makes its effects felt will usually have important repercussions on the person's capacity to adapt to the environment (Morena, 2015). For example, in the case of sudden blindness caused by a traumatic event, the person's capacity of adaptation to the new situation will generally be lower than that of blindness that develops gradually, possibly caused by a progressive illness (for example, diabetic retinopathy or glaucoma).

To establish the most complete picture of the person it is also necessary to enquire into other areas, for example asking about personal desires and aptitudes. As already mentioned, two people with the same functional limitations could have completely different life projects as far as their affective, social, educational, professional or leisure spheres are concerned.13

To understand a person's background fully it is important to look also at details of the family and social support network. Adaptations will only work if the disabled person is considered in connection to the figures who help them to perform everyday activities. This type of approach is fundamental not only because in situations of severe disability actions to put in place might be addressed mainly or solely at making the caregiver(s) tasks easier,14 but also because the presence of other people when carrying out an activity can have an impact on the size and configuration of spaces and must thus be carefully assessed from a design standpoint.

13 See § 2.1.

14 *Ibidem.*

12 Italian Standard UNI 8289:1981 makes *flexibility* a requirement for usability. It is defined as "aptitude of spaces for transformation and with scope for change in the needs of users through time". This definition of flexibility is very similar to that of *adaptability* laid down in Art. 2 Section I) of Italian Ministerial Decree 236/1989, which states: "adaptability is understood as the possibility through time to modify built space at a limited cost, with the purpose of rendering it completely and easily usable also by people with reduced or impeded motor or sensory capacities."

#### 2.5 Design Solutions

Once the data acquisition phase is concluded, the most appropriate solutions can be defined for housing adaptation. These solutions fall into three areas of action:

The proposed solutions should be based on the interdisciplinary wisdom derived from field data16 and since they are for environments for private use, they should tend toward maximum personalisation.

The design approach should aim to make the most of the disabled person's residual capacities in the execution of specific activities while also turning the home into an "enabling" environment (Laurìa, 2014a). Indeed, spaces, equipment and installations play a central role in exploiting the person's abilities. The solutions identified must therefore allow the person to obtain the maximum level of autonomy.

Furthermore, the home can be the preferred environment for rehabilitation activities and of course this makes it necessary to call upon the collaboration of medical professionals.

The solutions to be carried out must be classified according to *levels of priority* based on the potential levels of autonomy at home they may achieve, so that adaptations with bigger impact on autonomy can be undertaken before others.

As said earlier, solutions must be devised so they can evolve with the needs and clinical picture of the disabled person. In other words, solutions should be such that they can adapt to the person's future over a reasonably long term. This may entail, for instance, the adoption of reversible solutions involving dry assembly methods.

Once the proposed adaptations have been carried out, they may have a deep influence on the life of the disabled person and of the family nucleus, establishing a new way of undertaking certain activities or reorganising care activities in the home environment. For example, following adaptations that lead to a significant increase in the person's autonomy, a caregiver may no longer be required for specific activities. These aspects should be carefully assessed when deciding solutions, and always taking into consideration the person's voiced and unvoiced wishes, as well as their habits.

15 This area of action includes both the traditional technological installations of the dwelling and the I.T. systems and devices that aim to improve the level of autonomy

at home of the severely disabled. 16 On this issue see Introduction and § 2.2.

There should be special attention to obtaining aesthetically pleasing solutions when possible to avoid stigmatising disability. It is best to avoid solutions and products with a "hospital" appearance, or only for the disabled, should be avoided (see Laurìa, 2003b). This attention – as Lewis (1986) points out – can contribute to making it easier for the person and their family nucleus to accept adaptations to their home.

The interfaces for assistive and home automation technologies should be as user-friendly as possible to make them easier and quicker to learn to use. Interfaces that are too complex could confuse the user and that leads to a refusal to use the proposed systems. Placing the *person at the centre of the project* means that making suggested technological solutions simple and easy to use and understand; it also means that the advantages they can bring to daily life must be clear.

In the European context various projects have been promoted in recent years aiming to enhance the quality of life of disabled and elderly people through the use of *assisted living* and *active living* technologies. Among these it is worth mentioning the *Active and Assisted Living* (AAL) *– ICT for Ageing Well* programme, within the scope of the Horizon 2020 programme, for funding projects to enhance quality of life of the elderly through the use of *Information and Communication Technologies* (ICT). The initiative *Make it ReAAL,* linked to the AAL programme, aims to promote standards, guidelines and open platforms for inter-operational solutions in the fields of *assisted living* and *active living*. Also falling within this remit is the open software platform, UniversAAL IoT, which provides solutions for the integration and interoperability of AAL services and promotes an innovative approach to the issue of the technical and semantic interoperability of systems.17

Last but not least, the disabled person and – when applicable – their family nucleus must be adequately informed about the possibility and performance of the proposed systems, devices and services. Following the implementation of the interventions, a support action may be necessary to ensure the proper use of the adaptation. Above all, for technological systems with some degree of complexity personalisation and learning should be scheduled.

17 Information obtained from *AAL - Active and Assisted Living programme - ICT for Ageing Well* (<http://www.aal-europe.eu/>), and from *UniversAAL IoT* (<http://www. universaal.info/>) (last access: 01/2019).

SECTION II

The ADA Project

## CHAPTER 3 Stakeholders and Beneficiaries

In outlining the structure and contents of the ADA Project several specific aspects had to be taken into consideration: its experimental nature; the overlapping of a scientific research project with an administrative procedure that envisaged the delivery of a service and a grant; the number of stakeholders and agencies involved; and – last but not least –the characteristics of the beneficiaries, who are severely disabled. In such a multifaceted, complex scenario, to achieve the proposed goals and ensure the quality of the service provided, it was necessary to construct a methodical and sufficiently flexible process, capable of governing complexity while facilitating the collaboration of the players involved, allowing them to operate in synergy to make the most of their specific skills.

#### 3.1 Implementing Agencies

The ADA Project is the result of a coordinated action involving many stakeholders with different functions, expertise and administrative and territorial bodies. It is quite a complex challenge to achieve successful collaboration between these subjects but it is crucial for bringing home the required results. This section describes the organisational structure that served as a backdrop and made possible methodical development of the phases of the ADA Project later described in detail in Chapter 4 of this book.

#### 3.1.1 Tuscany Regional Government

Tuscany Regional Government, and in particular the General Office for Citizen Rights and Social Cohesion – Social and Healthcare Integration Policies Sector (*Direzione Generale Diritti di Cittadinanza e Coesione Sociale – Settore politiche per l'integrazione socio-sanitaria)*, is the agency that promotes the ADA Project.1 Tuscany Regional Government provided funding, both of the organisational and operational structure, and for implementation of the interventions, through contributions to the health districts.2 Tuscany Regional Government also defines and guarantees compliance with all general criteria referred to the application of the project throughout Tuscany in order

1 The ADA Project was funded in two consecutive phases with 900,000 euros assigned to grants for participants and approximately 250,000 euros to cover the cost of research, design and administrative and operational management of the project. 2 See note 3 of the Introduction.

to ensure all the region's inhabitants are ensured equal conditions of access to the service offered. To this end, Tuscany Regional Government approved specific Guidelines that defined the development of the entire implementation process and directed the drafting of the call for applications at local level.

### 3.1.2 Tuscany Regional Health District

Following the approval of theGuidelines, in November 2016 Tuscany's thirtyfour health districts3 call for applications drafted by the regional administration in collaboration with theUniversity of FlorenceResearch Group was also approved.4

Figure 7 – Tuscany's thirty-four health districts (until 2017). In the bottom right corner: Tuscany's location on the Italian peninsula.

Health districts are the regional structures tasked with managing the ADA Project at local level. The actions each puts in place within their own district constitute a central part of the project. These actions can be summarised

3 For the reduction of Heath Districts from 34 to 26 in 2018, see note 2 in the Introduction.

4 See § 3.1.4.

thus: (1) receipt of regional funding; (2) publication of a call for applications for participating in the project, compliant with regional Guidelines; (3) promotion of the project among potential participants; (4) appointment of the members of the Multidisciplinary Assessment Units (*Unità di Valutazione Multidisciplinari*, UVM/UVH)5 assigned to the project's implementation phases; (5) participation of appointed personnel in the site surveys to the homes of the disabled and drafting of the accessibility recommendations; (6) assessment of grant applications and distribution of assigned resources to participants compliant with procedures defined by the call for applications (Case Assessment); (7) distribution of grants to entitled participants; (8) support in managing organisation and administration processes.

Given the importance of these tasks, it must be highlighted how these territorial structures represent the main link through which the regional policies and the goals connected to them can be transformed into concrete and efficient actions destined to the beneficiaries of the ADA Project. For this reason, from the onset, a key role was attributed to the capacity of the promoting agency (Tuscany Regional Government) and, to a lesser respect, to that of the other coordinating entities (Regional Accessibility Centre and University of Florence Accessibility Lab) to properly involve and motivate the managers and personnel of these regional structures, so as to ensure their active participation in the Project. Without a close involvement of health district officials, there was a great risk that the ADA Project would be perceived as an additional burden to the usual workload, which would have undermined its possibility of success and compromised the level of quality of its interventions.6

A single health district – the "Società della Salute Fiorentina Nord Ovest"7 – was selected by the Regional Government and tasked with the role of administrative management and coordination of the ADA Project both in the pilot phase and in its extension to regional scale. On behalf of Tuscany Regional Government, this health district established and managed the cooperation agreements with the University of Florence's Architecture Department and

6 This risk was mentioned several times during meetings with health district executives to discuss ADA management methods. Aware of the sheer difficulty of communicating the value of such an innovative project across quite different territorial contexts, the aim to involve heath district personnel as much as possible oriented many of the project's planning actions.

7 For the difference between health districts and *Società della Salute*, see note 3 in the Introduction.

5 As defined by Tuscany Regional Government Law n. 66/2008, Multidisciplinary Assessment Units (UVM) are the basis of the "multi-dimensional personal assessment model". Each UVM comprises, as a minimum, a district physician, a social worker and a nurse. This composition may be supplemented by including the GP of the person assessed, medical specialists and other operators considered necessary for defining the Personalised Assistance Project (PAP). The acronym UVH is not part of regional legislation and will usually refer to a specific UVM commission for disabled persons.

with the Institute of Science and Technology of Information of the National Research Council of Pisa.

#### 3.1.3 Tuscany Regional Accessibility Centre

Within the ADA Project, the Regional Accessibility Centre8 (*Centro Regionale per l'Accessibilità* – CRA) was tasked with assisting the health districts and other agencies involved from an organisational and logistic standpoint.

The CRA coordinates ADA Project promotion, educational and information activities, organises site surveys across regional territory, keeps records of activities of interdisciplinary work groups operating in the various health districts, and ensures procedures are standardised at regional level. Finally, it has the task of managing any issues arising during the entire process.

#### 3.1.4 Florence Accessibility Lab Interdepartmental Research Unit

The scientific coordination of the University of Florence Accessibility Lab (FAL) Interdepartmental Research Unit9 is at the underpinning of the ADA Project. The research, theorganisation of contents derived from accessibility and sociology scientific expertise, the definition of procedures and tools used in the project, and the coordination, monitoring and sharing of the various phases with the other partners, as well as the assessment of results revolve around the FAL.

For the implementation of these tasks, FAL's scientific coordinator ("Principal Investigator") established and runs a research group composed of two architects with expertise in environmental accessibility and a sociologist who is an expert in built environment and evaluation. This research group designed research methodology and defined its operating tools. It also offered training and support to seven additional architects10 who worked with the interdisciplinary work groups11 established in every health district in Tuscany to put in place the project's implementation phases.

8 Until 2017 the name of the *Regional Accessibility Centre* was "Regional Centre for Information and Documentation on Accessibility" (Centro Regionale di Informazione e Documentazione sull'accessibilità – CRID). For information on the CRA, see <http://open.toscana.it/web/toscana-accessibile/cra-centro-regionale-accessibilita> (in Italian; last access: 01/2019).

9 For an overview of FAL Research Unit past and present activities, see: <https://www. dida.unifi.it/cmpro-v-p-457.html> (last access: 01/2019).

10 These architects (Chiara Angioli, Enrico Cibei, Lucas Frediani, Giordana Gregori, Marco Mariotti, Nadia Recca and Lulghennet Teklè) were selected through a public call for applications made by the University of Florence Department of Architecture in December 2016, which garnered a total of seventy-two candidates from all over Italy. 11 See § 3.2.

Figure 8 – The University of Florence Accessibility Lab Interdepartmental Research Unit staff who worked on the ADA Project at Palazzo Vegni, Florence. From the left: Antonio Laurìa (principal investigator), Junik Balisha, Beatrice Benesperi, Fabio Valli and Paolo Costa.

#### 3.1.5 The "A. Faedo" Institute of Information Science and Technology

The "A. Faedo" Institute of Information Science and Technology (IS-TI) of Pisa's National Research Council (*Istituto di Scienza e Tecnologie dell'Informazione, Consiglio Nazionale delle Ricerche* – CNR) and, in particular, personnel from the *Human Interfaces in Information Systems Lab* and the *Signals and Images Lab*, 12 worked with University of Florence personnel to identify and define housing adaptation solutions regarding assistive and home automation technologies.13 This collaboration included both

12 For information on the activities of the ISTI-CNR, see: <http://www.isti.cnr.it/> (last access: 01/2019).

13 During the ADA Project pilot phase ISTI-CNR personnel also worked to validate tools developed by the University of Florence Research Group and joined in the assessment actions for regional funding assignment.

organising training for the architects participating in the interdisciplinary work groups (to provide them with the contents and knowledge necessary for them to address autonomously the simpler cases in terms of assistive and home automation technologies during site surveys) and offering them dialogue and support about these specific fields when drafting the accessibility recommendations for the more complex cases.

### 3.1.6 The Learning and Communication Aids Labs

The ADA Project contemplates the involvement of Tuscany Regional Government's *Learning and Communication Aids Labs* (*Laboratori Ausili per l'Apprendimento e la Comunicazione* – LAAC)14 network. The various professions present in the LAAC and their experience in providing personalised solutions to disabled persons in the field of assistive products, including the sector of assistive technologies, represent an important resource for the ADA Project. A resource in some respects complementing that provided by the ISTI-CNR.

Figure 9 – Roles and tasks of ADA Project players.

14 For further information on Tuscany Regional Government LAAC tasks, see: <http://open. toscana.it/web/toscana-accessibile/laboratorio-ausili> (in Italian; last access: 01/2019).

LAAC members participated in training architects operating in the interdisciplinary work groups, illustrating the services provided and laying the foundations for future collaborations in the field of technological support and solutions whose use aims to enhance personal autonomy and communication and learning functions.

#### 3.2 Interdisciplinary Work Groups

An Interdisciplinary Work Group (henceforth work group) was set up in each health district to put in place the ADA Project.

The interdisciplinary approach15 adopted by the ADA Project is based on the operating methods that Tuscany Regional Government social and healthcare services operators have pursued for some time via the *Multiprofessional Integration Model*. This model is based on assessment commissions (Multidisciplinary Assessment Units – UVM/UVH) whose "basic" configuration envisages the presence of a district physician, a social worker and a nurse. When necessary, these commissions can include other medical professionals (like specialist physicians). In this way a procedure and common language is established for assessment and care of every disabled person and their families, using the different knowledge, expertise and tools brought by each of the professions involved.

Thanks to the presence in the various work groups of professionals from fields other than social and healthcare services, the ADA Project was able to make another step forward in the multidimensional assessment of the disabled person. The introduction of the "environmental" component in personal assessment resulted in an improvement in fact-finding and the ADA Project's consequent adoption of the biopsychosocial model of disability.

Within the ADA Project, work groups are always composed at least by three people:

Healthcare contributions aim to understand the disabled person's health conditions and their functional limitations. These assessments are conducted mainly by physiatrists.

The contribution of social services expertise in needs assessment focuses on observation of the person in their family/social context, on the features of any social support network present, as well as on the recognition of existing social resources and the possibility of reinforcing them.

The environmental accessibility aspect aims to highlight any conflict the disabled person faces in the home environment and then identify possible design solutions to expand autonomy for conducting activities at home while improving assistance and care tasks provided by any caregiver/s.

Although this plurality of perspectives initially generated communication difficulties among the various subjects, it soon stimulated the establishment of a natural debate leading to a constructive atmosphere and a positive mutual influence across the various fields of knowledge. Interdisciplinary collaboration proved to be an efficient choice not only for deciding intervention methodology, but also for achieving objectives in terms of the quality required by the ADA Project. For example, awareness of the degenerative process of certain pathologies involved all work group members in defining design solutions that would adapt over time. This result would not have been possible using a sectorial approach.

When needed, additional professional figures ("external experts") may join the work group to address cases with specific profiles. These figures belong to the social and healthcare sectors (for example, paediatric neuro-psychiatrists, ophthalmologists, psychologists, etc.), as well as to those concerning assistive and home automation technologies and personalised help. External experts are thus the "variable" component of the work groups.

External experts can intervene in site surveys but also in drawing up the accessibility recommendations, to assess their efficiency and improve proposals. In some cases, the inclusion of external experts in site surveys may be decided during preliminary work group meetings, on the basis of an analysis of the profiles of the disabled persons participating in the project. This is especially valid for experts from the health, social services and aids sectors, whose involvement is also facilitated by the fact that they are already health district staff. In the case of experts from the assistive and home automation technologies sectors, however, their involvement is decided on the basis of site survey results and is needed for drawing up the accessibility recommendations.

Finally, in each health district, project implementation is also supervised by a member of the administrative staff. The contribution of this figure is especially significant during the initial project phases (definition of the call for applications, management of participant data, ensuring compliance of requisites for participating in the project) and at the end (administrative control of intervention proposals, distribution and delivery of grants).

Work group members were all trained in data collection and administration procedures at the beginning of the project.16

#### 3.3 Beneficiaries of the ADA Project and Requirements for Participation

The ADA Project was activated by Tuscany Regional Government through two calls for applications. The first, in April 2015, was for the project's pilot phase and limited to just two health districts; the second, which involved all regional health districts was published in November 2016.

To be able to take part in the project, at the date of application the disabled person had to meet the following requirements:

ing in situations of greater need.

3. Resident in the health district and in the home for which a site survey and accessibility recommendations service were being requested.

There had been a proposal to set no upper age limit at 65 years for project applicants. Although it is true that age usually aggravates an existing disability, in a larger number of cases age itself brings disability and this is reflected in the number of disabled persons in the older age range (see ISTAT, 2014). Moreover, it is precisely the link between disability and old age that makes it so complex to distinguish between the various levels of infirmity among elderly people. At the end of the day, however, bureaucratic and administrative hurdles prevented the elimination of the 65-year age limit. The requirement of residence derives from the intention to orient provision of the service to homes where beneficiaries live on a regular basis, thus help-

For those who wish to obtain a grant from the Regional Government in addition to the site survey and accessibility recommendations service, there

16 See § 4.2.

is a further requirement, which is to prove that the family unit's income does not exceed 36,000 euros, checked by the *Indicator of Equivalent Economic Situation* (*Indicatore della Situazione Economica Equivalente* – ISEE).17

Figure 11 – ADA Project logo (by Antonio Laurìa).

17 The ISEE is an instrument adopted in Italy for assessing the financial status of families. It takes into account income, assets and property owned, as well as the characteristics of the family nucleus (number and type).

## CHAPTER 4 Methodological Design

Due to its very nature, the healthcare and rehabilitation process for people with severe disabilities is extremely complex. The definition of effective, reliable and consistent housing adaptations to increase autonomy at home is a tough challenge. The ADA Project's methodological design and the phases presented in this chapter attempt to address this challenge.

#### 4.1 Introduction

To achieve its goals, the ADA Project applies a methodological concept inspired by the Performance-based Design approach defined by Gibson (1982: 4) as "the practice of thinking and working in terms of ends rather than means. It is concerned with what a building or building product is required to do, and not with prescribing how it is to be constructed."

This design comprises a *preparatory phase*, three *implementation phases*, and an *ex-post evaluation phase*.

The *preparatory phase* has two goals: to draft the project procedures and operating tools and create a common knowledge base through specific training activities for the members of work groups operating in the health districts. Training is essential, given the different backgrounds of the various members of the interdisciplinary work groups (physicians, social workers, architects, etc.) and the complexity of the challenges of the ADA Project.

The *implementation phases* have three main tasks: (1) a site survey to assess the functional limitations, social context and physical home environment of the disabled persons who participate in the project; (2) drafting of very personalised accessibility recommendations to define housing adaptations; (3) profile assessment of the disabled persons and of critical environment, family and social situations that hinder their autonomy at home, with the purpose of defining and assigning a grant for proceeding with interventions.

The *ex-post evaluation phase* analyses the ways in which a process is implemented and the results, both expected and unexpected, that it produces (Preiser & Vischer, 2005; Costa, 2014). The ex-post assessment takes on a special connotation in the case of housing adaptations (see Gitlin, 1998; Fänge & Iwarsson, 2007). As mentioned earlier, since this phase is still in progress, its results will be described in a forthcoming publication.

Antonio Laurìa, Beatrice Benesperi, Paolo Costa, Fabio Valli, *Designing Autonomy at Home. The ADA Project. An Interdisciplinary Strategy for Adaptation of the Homes of Disabled Persons*, ISBN (online PDF) 978-88-6453-898-3, © 2019 FUP, CC BY 4.0 International, published by Firenze University Press

#### PREPARATORY PHASE

procedures and operating tools work groups training

IMPLEMENTATION PHASES

site surveys accessibility recommendations case assessments

#### EX-POST EVALUATION PHASE

Figure 12 – ADA Project methodological design.

#### 4.2 Preparatory Phase

The University of Florence Research Group's first action was to draft the procedures and operating tools for the ADA Project. These procedures and tools were tested during the ADA Project pilot phase undertaken by two Tuscany Regional health districts (Fiorentina Nord Ovest and Pratese). During this experimentation phase it was possible to identify several critical points that were solved/mitigated by patient, progressive refinement.

Before the beginning of activities, and with the purpose of obtaining procedures and results that were as homogeneous as possible and comparable throughout the entire regional territory, the members of the various work groups participated in a series of meetings regarding cultural, methodological, organisational and administrative aspects of the ADA Project. These training activities took place both in Florence (at the headquarters of the Tuscany Regional Government and of the Florence Accessibility Lab) and at the local level in the various health districts. They were conducted by the research group members with the cooperation of experts from other agencies involved in the project.

In particular, work groups architects attended 36 hours of project-specific training courses that touched upon several aspects of the ADA Project: (1) the context of the regional policies of which it is a part, (2) the people to whom it is addressed, (3) its various phases and operating tools, and (4) the administrative procedures regulating it.

Some topics addressed are not usually part of an architect's typical training: aspects of conduction of the site survey and entering the social context of persons with severe disabilities and of their families, which requires specific sociopsychological training; assistive and home automation technologies aspects; prosthetic assistance strategies (personalised medical aids and prosthetics).

Furthermore, work group architects underwent specific training in how to use the data production tool at the home of the disabled person (*ADA Assessment Model*; see Chapter 5). That also included a stage of field training, with two site surveys supervised by personnel from the University of Florence research group. This field training was necessary to familiarise with the specific complexities of the tool's contents and methods, which broach various fields of knowledge.

#### 4.3 Implementation Phases

The ADA Project consists of three implementation phases:

#### 4.3.1 Site Survey

The site survey at the homes of disabled persons participating in the ADA Project is the main opportunity for collecting data necessary both for drafting the accessibility recommendations and for case assessment. The site survey, however, develops deeper, more far-reaching meanings, expressing a sense of the regional institution's nearness to and attention for the severely disabled and their families, and where necessary is oriented to strengthening the care service. The site survey can also serve to identify additional measures of support for the person, as well as rehabilitation and/or training activities (for example, courses for learning to use or improving skills for new equipment and information technologies) directed at making the most of personal capacities in the home environment.

The site survey is based on two main guiding principles: personalisation of the analysis, and the interdisciplinary nature of the approach. It intends to produce data relevant to three assessment areas: (1) *Limitation to functional autonomy* of the disabled person, (2) *Assistance and social deficits*, and (3) *Accessibility issues* in the home environment*.*

The analysis of the disabled person's functional limitations, knowledge of their family, their social and healthcare services context, assessment of their dwelling's accessibility issues, their personal stories, etc. are taken into account with regard to the various home activities, and addressed by all members of the work group, each with their own expertise. In particular, the physician is responsible for acquiring information and data on the disabled person's *limitation to functional autonomy*; the social worker assesses *assistance and social deficits*; *accessibility issues*1 – in the form of *architectural barriers* to be removed and *facilitators* to be added – are the task of the architect.

### Figure 13 – Diagram of the data flow during and after the site survey.