This paper analyses the fundamental changes in the ethical framework of the care model required for effective deinstitutionalisation in the field of disability. Adopting a doctrinal and conceptual approach grounded primarily in the CRPD, it examines the transition from an assistencialist culture, rooted in institutional forms of care, to a human rights-based approach that recognises persons with disabilities as active rights holders. On this basis, the paper identifies some of the key rights and ethical dimensions that should guide the transformation of care and support systems. It argues that deinstitutionalisation requires not merely a change in the place or manner in which care is provided, but a systemic transformation aimed at enabling persons with disabilities to exercise choice and control over their own lives and to live and participate in the community on an equal basis with others.
The institutional approach has long prevailed in care models in the field of disability, meaning that persons with disabilities who require support have typically been forced to live in segregated residential settings or isolated within the family home or in their own homes, and have not been allowed to make decisions or exercise control over their way of life (
However, for some years now, the need to transition towards a new community-based care system has been emphasised, with the implementation of deinstitutionalisation processes (
Although this transition has been called for by various bodies, and in particular by the European Union
This paper aims to explore the meaning, scope and implications of this requirement in the field of disability, and, specifically, to determine the changes in the ethical framework required for the effective deinstitutionalisation of the care system for persons with disabilities, and to identify, based on this framework, certain key rights essential to the success of the process.
The paper adopts a doctrinal and conceptual approach, taking the CRPD as its main normative framework and analysing it in the light of the interpretative work of the Committee on the Rights of Persons with Disabilities, other United Nations human rights mechanisms and bodies, relevant policy documents, and specialised academic literature[5]. Against this background, the specific contribution of the paper is to identify and systematise the fundamental ethical and conceptual changes involved in moving from a care model rooted in institutional culture to a community-based support model grounded in human rights, and to show how these changes point to the recognition and effective guarantee of certain key rights as essential components of deinstitutionalisation.
At present, there appears to be a broad consensus that institutionalisation should not be identified simply with the number of people living together in a particular building or with its size, but rather with a framework for understanding care relationships that could be termed institutional culture.
This culture is essentially characterised by the following features: isolation and segregation from the community; a one-size-fits-all approach, block treatment and rigid routines regardless of the individual’s wishes and preferences; prioritisation of the organisation’s interests over individual needs; a lack of control over one’s own life and the decisions that affect them; and a systematic asymmetry, a power imbalance, between carers and care recipients, which manifests itself, among other dimensions, in the normalisation of the use of restraints (
In the specific field of disability, too, these cultural dimensions have been cited as defining features of institutionalised settings, with the further observation that institutional culture may be present not only in large care homes, but also in small group homes, and even in services provided in individual homes and in the care provided to persons with disabilities by their families (
Institutional culture, as various studies have shown, has a negative impact on the quality of life of persons living in institutional settings (
For this reason, as explained in the introduction and, in particular, following the experience of the pandemic (
In line with the preceding reflections, deinstitutionalisation, including in the field of disability, should not be equated simply with the closure of residential centres where a certain number of persons with disabilities are concentrated, rather it should be understood as a process of change involving the dismantling and eradication of all the defining aspects of institutional culture, as mentioned above, across all care settings and all care relationships.
With regard to the subject matter of this paper, it is also essential to emphasise that, according to the CRPD model, deinstitutionalisation as a process is linked to independent living and inclusion in the community as objectives—dimensions recognised as principles and rights in Articles 3 and 19 of the CRPD
Although the CRPD does not expressly refer in its text to the requirement for deinstitutionalisation, from its very first Concluding Observations, the Committee on the Rights of Persons with Disabilities has categorically stated that the implementation of Article 19 of the CRPD at the national level requires the implementation of effective deinstitutionalisation strategies (for example,
Both in General Comment No. 5, adopted in 2017 with the aim of clarifying the meaning and obligations arising from Article 19 of the CRPD, and in the Guidelines on Deinstitutionalisation, including in Emergencies, adopted in 2022 with the aim of guiding and supporting States Parties in planning deinstitutionalisation processes and preventing institutionalisation, the Committee affirms the fundamental incompatibility between institutional culture and independent living and inclusion in the community. Thus, the Committee states, for example, that “both independent living and being included in the community refer to life settings outside residential institutions of all kinds”, noting that regardless of their size, purpose or characteristics, or the duration of confinement or deprivation of liberty, an institution can never be considered to be in line with the Convention (
In response to this approach, it could be argued that some of these residential settings might be transformed and that some persons with disabilities might freely choose to live in them, provided that genuine alternatives are available. However, this qualification does not alter the fundamental requirement that deinstitutionalisation demands the closure of all facilities and services, and the departure of persons with disabilities from all environments that retain elements of institutional culture; and that this requirement is not met by the mere redesign or improvement of institutional care if these features continue to be reproduced, even on a small scale. From this perspective, the decisive criterion is not the formal designation, size or collective nature of a particular living arrangement, but whether persons with disabilities effectively enjoy choice and control over where, with whom and how they live, exercise control over the supports they receive, and are able to participate in the community on an equal basis with others. A residential setting that reproduces segregation, rigid routines, lack of individual choice or control, or structural power asymmetries cannot therefore be regarded as community-based merely because it is smaller or has been redesignated as such.
Furthermore, it is clear from the Committee’s statements (
Indeed, a fundamental part of this transformation is a profound shift in the ethical framework of the care model, replacing the perspective of assistencialism that underpins the care model rooted in institutional culture with the human rights-based approach inspired by the CRPD, which serves as the foundation for the new care model towards which deinstitutionalisation processes are moving.
In the field of disability, the persistence of a care model based on institutional culture—whose main features were examined in the previous section—is largely explained by an ethical and cultural framework that can be described as assistencialist. The term “assistencialism” is used here to refer to a welfare-based and paternalistic approach that regards persons with disabilities primarily as passive recipients of protection, assistance and care, rather than as active holders of rights. In this sense, successful and meaningful deinstitutionalisation requires challenging the assumptions underpinning this framework from the perspective of a human rights-based approach
The assistencialism-based approach involves viewing persons with disabilities as recipients or passive objects of attention and care, such that interventions are justified on the grounds of protecting the person’s safety (and, on occasion, even protecting society or third parties). In contrast to this view, the rights-based approach requires that persons with disabilities be regarded and treated as genuine, full and active human rights holders, and that interventions be based on the respect, guarantee and promotion of human rights and aimed at their fulfilment (
In any case, it is worth bearing in mind that the failure to perceive persons with disabilities as rights-holders, characteristic of the assistencialist paradigm, stems from a standard conception of human rights dating back to the Enlightenment, which regards capacity, independence, autonomy or self-sufficiency as defining features of moral agency and, consequently, of the attribution of dignity and rights (
Thus, falling below the standard level of abilities, the existence of support needs, and/or dependence on others to carry out certain activities or make decisions are interpreted as factors that diminish a person’s worth, that imply a loss of dignity, and that prevent persons with disabilities from choosing and pursuing their own life plans.
In light of this perspective, within the discourse on human rights, deinstitutionalisation calls for a re-examination of this standard conception and the development of a new model or theory of human rights, of which the CRPD is an expression (
The assistencialist approach, and its standard theory of rights, is also linked to the medical model, which regards disability exclusively as a trait or condition of the person arising from the existence of certain ‘deficiencies’ or ‘anomalies’ (
Thus, from the medical model, the vulnerability that disability represents is conceived solely as an individual condition implying a certain fragility or weakness (
This perspective explains why institutionalisation has been accepted as a necessary measure for the protection of persons with disabilities who, due to their condition, cannot live in mainstream settings. Thus, the medical model has contributed to fostering a narrow philosophy of social support that seeks primarily to “compensate” the person with a disability for their “loss” and which focuses attention on “the impairment, not the person” (
For its part, the rights-based approach leads us to consider, in line with the social model, that disability is the result of mental constructs and social circumstances (
According to this view, the vulnerability that disability represents is not seen exclusively, as in the assistencialist model, as an individual condition, but as a situation generated by the interaction between this condition – viewed in terms of diversity rather than impairment – and social barriers that place persons with disabilities in a position of subordination (
From this perspective, the limitations on participation and the restrictions on rights suffered by persons with disabilities are no longer viewed as something natural, attributable to impairments, but as a manifestation of structural discrimination and as situations where rights are not being met. Thus, the new framework provided by the social model reveals that institutionalisation, far from being a necessary and justified measure, is linked to the existence of environmental and attitudinal barriers.
The fact is that persons with disabilities are forced to live in segregated, institutionalised settings for reasons linked to the very design of care systems that lack community-based living alternatives and support measures for families (
This shift also requires abandoning a homogeneous understanding of disability and incorporating an intersectional perspective. While the assistencialist approach tends to consider disability in isolation, a human rights-based approach must take into account how disability interacts with other personal and social factors, such as age, gender, support requirements, socioeconomic situation, ethnic or migration background, or place of residence, giving rise to different experiences of inequality and discrimination. These intersections are particularly relevant to deinstitutionalisation, since they may affect the risk of institutionalisation, the barriers encountered in leaving institutional settings and the possibilities of accessing adequate community-based support (
The assistencialist paradigm also embodies the philosophy of integration, understood in the sense of assimilation (
Once again, the social model and the rights-based approach challenge this view by advocating for inclusion and demanding that society accommodate human diversity and allow persons with disabilities to be active participants in it. From this perspective, the services must adapt to people’s needs, and not the other way round.
In connection with all of the above, assistencialism adopts an individualistic stance that fails to take into account interdependent relationships or the importance of the community in people’s lives. Indeed, this care model does not aim to “forge inclusive pathways into communal life” and “left out altogether was the connection between the advancement of disability rights and community development” (
However, the rights-based approach signals a shift in focus that emphasises the community-based approach, recognising that “social inclusion is vital to the evolution of our sense of self” and that new services “should stitch together social capital to ensure an equal right to belong, to grow and to be connected with others” (
In accordance with its basic premises, the assistencialist care model is not oriented towards the moral self-determination of persons with disabilities whom, as noted above, it regards as persons without moral agency and, therefore, without the capacity to make their own decisions about their lives or to control and direct the support and care they receive (
In contrast to the hyper-paternalism that prevails within the assistencialist cultural framework and the tendency to make decisions on their behalf, the rights-based approach demands that persons with disabilities take the lead in all matters relating to their own lives. It is therefore necessary to stop focusing on people’s individual circumstances and to raise awareness of the importance of respecting the choices made by persons with disabilities regarding their own way of life. In this regard, it has been noted that the services of the future should enable people to “self-actualise in the world”; consequently, alongside social inclusion, moral self-determination takes on greater importance—that is, having a voice of one’s own, being able to choose, and exercising control (
The cultural framework within which the assistencialist care model is situated is also characterised by fostering and promoting power and domination relationships between carers – particularly, though not exclusively, when referring to professionals working in support services– and those receiving care. These power relationships underpin the justification for the use of restrictive measures, like physical, chemical, or environmental restraints, that are normalised as routine safety solutions and create a significant risk of violence, exploitation and abuse. Based on these cultural assumptions, it is understood that the concept of care carries, for persons with disabilities, a heavy historical connotation of oppression and subjugation (
The rights-based approach requires, at this point, the eradication of power relations in care which, as has been noted, underpin the use of restraints as a naturalised basic element of care. This approach conceives of care as a symmetrical relationship and takes into account the rights of all those involved, both those receiving care and carers (
In any case, the assistencialist paradigm of services for persons with disabilities reflects the general devaluation of care in our society and the view that it is a private matter. People in need of care are regarded as a burden that imposes negative consequences on society, the weight of which must be borne by families, who are entrusted exclusively with the provision of care. Moreover, it is a burden which, in accordance with the prevailing patriarchal culture, must fall primarily on women, the feminisation of care being another of the key aspects of the model
On the other hand, the cultural framework within which assistencialism is embedded holds that the rights of persons with disabilities—particularly when it comes to demands involving State provision, as is the case with care—are not genuine human rights, but merely matters of social welfare (
Another aspect that helps explain the characteristics of this model and its institutional nature relates to the view of housing not as a right, but as an economic good subject to market forces (
For its part, the rights-based approach calls for a revaluation of care in our societies and advocates for its equitable distribution. Care must be understood not as a burden, but as a “necessity for the existence and reproduction of societies, which needs to be valued and, as a consequence, collectively shared through a system that redistributes care work through co-responsibility among all persons, particularly men and women, and among families, communities and the State” (
Likewise, the progressive realisation of economic, social and cultural rights cannot ignore the interconnection and interdependence between all human rights, an aspect also emphasised by the CRPD in overcoming divisions between categories of rights, bearing in mind that a lack of support can impede the exercise and enjoyment of all rights. In this vein, the rights-based approach also requires moving beyond the conception of housing as a market commodity.
Finally, the contrast between the assistencialist and the human rights-based approaches also extends to the political and public spheres. The assistencialist model has traditionally relegated persons with disabilities to a passive position, excluding them not only from decisions concerning their own lives, but also from decision-making processes concerning the laws, policies and services that affect them. By contrast, the human rights-based approach requires their recognition as active participants in the collective processes through which these norms, policies and services are designed, implemented and evaluated (
The ethical framework of the rights-based approach applied to deinstitutionalisation, whose differences from the approach of assistencialism were analysed in the previous section, points to a series of key rights, largely recognised in the CRPD, which also highlight some basic ethical dimensions that must be taken into account in the process of change.
A first set of rights that is particularly relevant to deinstitutionalisation concerns the right of persons with disabilities to choose their way of life and to make decisions concerning their own lives.
These dimensions are closely connected to Articles 19 and 12 of the CRPD. Article 19 expressly recognises the equal right of persons with disabilities to live in the community, with choices equal to others, while Article 12 recognises their right to enjoy legal capacity on an equal basis with others in all aspects of life. Taken together, these provisions reinforce the recognition of persons with disabilities as moral agents entitled to determine how they wish to live their lives and to make their own decisions.
In its General Comment No. 5, when analysing the dimensions of the right to independent living recognised in Article 19 of the CRPD, the Committee states that independent living “does not necessarily mean living alone” and “should not be interpreted solely as the ability to carry out daily activities by oneself”, and links this concept to personal autonomy, self-determination, and control “over their lives and make all decisions concerning their lives”.
Thus, the Committee affirms that the right to independent living “refers to an individual dimension, as a right to emancipate oneself without being denied access and opportunities” (
Thus, the concept of choice and control must feature as a fundamental component of the exercise of autonomy in support and care systems (see also
For its part, Article 12 of the CRPD, which under the heading ‘Equal recognition before the law’ recognises the right to equal legal capacity for persons with disabilities, aims to grant persons with disabilities “the ability to shape their own lives and thus change the way in which the world interacts with them … is an antidote to the tendency of traditional service systems to bypass the wishes of the person and to entrap them in a world not of their own making. It points strongly towards the personalisation of services” (
In any case, in accordance with Article 12 of the CRPD, persons with disabilities have the right to support in making their own decisions regarding the world in which they wish to live. The emphasis on the elements of choice and control must not lead us to forget that there are barriers that will always affect the capacity for self-determination (
Indeed, as the Committee on the Rights of Persons with Disabilities has pointed out, Article 12 requires that “the person’s rights, will and preferences be respected” and that, where “after significant efforts have been made, it is not practicable to determine the will and preferences of an individual, the ‘best interpretation of will and preferences’ — a standard which implies that the support person must make the decision by seeking to determine what the person concerned would have wished, taking into account their life history, life course, beliefs and values — “must replace the ‘best interests’ determinations” (
A further right that is central to deinstitutionalisation is the right of persons with disabilities to be included in the community, expressly recognised in Article 19 of the CRPD and closely connected to the exercise of other rights throughout the Convention. From a rights-based perspective, inclusion in the community requires more than the physical presence of persons with disabilities in community settings: it entails the possibility of participating in, contributing to and being valued as part of the community. Indeed, from a rights-based perspective, and as previously noted, “community is fundamental to our sense of who we are” and “communities are stronger when we are all included and when everyone can participate, contribute and be valued” (
The success of deinstitutionalisation therefore depends, in an essential sense, on the creation of inclusive communities as spaces which, amongst other aspects, respect the rights and promote the participation of persons with disabilities in all spheres of social life and, in particular, in education, employment, culture, leisure and sport, areas in which the CRPD also emphasises inclusion. Inclusive communities value diversity and mobilise all available resources to enable persons with disabilities to realise their life plans.
This certainly implies the need to prepare communities for inclusion. As indicated by the
The right to inclusion in the community is therefore closely connected to the right to accessibility. Inclusive communities must necessarily be accessible communities, since accessibility is a precondition for persons with disabilities to live independently and participate fully in all aspects of life, as recognised in Article 9 of the CRPD. In any case, it is important to clarify that deinstitutionalisation, particularly if understood as in this paper as a systemic transformation, requires the adoption of a broad concept of accessibility. From this perspective, accessibility is considered not only a principle but also a right, and it applies not only to specific areas, goods and services but also to all rights as an essential condition for guaranteeing their exercise on an equal basis, thus also forming part of the right to equality (
The rights to choose one’s way of life and to be included in the community are closely connected to the right to receive the support required to exercise these and other rights. Support occupies a central and cross-cutting position in the CRPD and is expressly addressed in relation to several rights, with Articles 12 and 19 being particularly relevant to deinstitutionalisation (
Article 12, as already noted, refers to support in decision-making; support which, in any case, as previously stated, must respect the will and preferences of persons with disabilities and, where these cannot be determined, must be guided in its actions by the best interpretation of that will and those preferences, rather than by the criterion of the best interests inherent in the welfare model.
For its part, Article 19 refers to support to promote independent living and prevent people from being separated from the community.
Indeed, deinstitutionalisation requires the existence of support systems – understood as a network of people, products and services, both formal and informal, including family-based support, and both human and technological– that provide assistance to persons with disabilities so that they can lead a life of their own choosing within the community (
As the Committee on the Rights of Persons with Disabilities has noted, persons with disabilities have the right to rely on natural support systems and networks that are essential for leading an independent life. These include “relationships that an individual develops with family members, friends, neighbours or other trusted persons who provide the support that a person requires for decision-making or daily activities, in order that the person can exercise the right to live independently and to be included in the community” (
Certainly, “support is a normal part of community life, with families serving as the first source of support for everyone” and “for many persons with disabilities, family support serves as a bridge to access other assistance needed to fully enjoy their human rights” (
Taking these dimensions into account, the rights-based approach requires that family support be based, as is generally the case with informal support, on the free choice of persons with disabilities. This implies that other alternatives must be available and requires that, if persons with disabilities decide to receive support from their families, these families are provided with adequate resources and services to enable them to support their family members in living independently in the community (
In any case, deinstitutionalisation cannot be built on the assumption, present in the assistencialist model based on institutional culture, that families will absorb or re-absorb all the support needs of persons with disabilities. This would, in effect, have a disproportionate impact on women who typically took time out of the labour market to care for a family member with a disability, in turn potentially affecting their life goals and pension rights and, consequently, also the quality of care they might need in the future. A new rights-based support model must not perpetuate gender inequalities (
In this regard, one of the central dilemmas posed by the transformation of the service model linked to deinstitutionalisation is, precisely, the balance between formal and informal care policies and family support. From a rights-based perspective, the final decision on how to achieve this balance must take into account that, in many societies, the family is the primary source of support and that this reflects, in part, prevailing cultural norms, but also the absence or inadequacy of formal support systems; it must recognise and address the gender impact and must give a voice to persons with disabilities (Ibid: paras. 60, 70, 88 and 89).
Alongside informal support, the success of the deinstitutionalisation process critically depends on the State developing a wide range of formal independent living support services which, according to the Committee, must meet the following features: be designed to facilitate community living and full inclusion and participation and to prevent isolation and separation from others, and be suitable for that purpose; be individualised and personalised and based on the choice of persons who have the right to choose services and their providers according to their individual needs and personal preferences; be flexible to adapt to the needs of service users and not the other way round; be accessible, affordable, acceptable and adaptable for all persons with disabilities; take into account different living conditions, considering situations where disability interacts with other factors; and be based on a rights-based approach (
This rights-based approach also requires a non-restrictive support model, which eliminates practices such as involuntary institutionalisation on the grounds of disability—considered by the
It is also important to emphasise that supports for independent living include both human and technological support.
Human support includes support persons, support staff, direct support professionals, etc. (
Technological support includes a variety of devices such as traditional technical aids, assistive products and other related technologies, for example, those involving artificial intelligence. Artificial intelligence, if used appropriately and responsibly, can contribute to the transformation of services for persons with disabilities and promote independent living by contributing to the personalisation and comprehensiveness of support and to the continued presence of persons with disabilities in family and community settings, which can be facilitated through the remote use of AI systems (
With regard to the right to support, and from the perspective of shared responsibility, the role of the social economy—that is, of non-profit organisations, but also of businesses—must be taken into account; consequently, the challenge of the commodification of care must be addressed. From a rights-based perspective, the market – which, in fact, plays a central role in many societies today in the provision of support services for persons with disabilities – must be a means and not an end that leads to inequality in care and the commodification of the individual. To avoid this outcome, the State must always retain its role as the provider of last resort; it must carry out significant oversight and regulatory work by creating – for example, through public procurement legislation – regulatory frameworks and incentives to reorient for-profit and non-profit services
The right to housing and the right to social protection are also essential to the success of deinstitutionalisation processes. The possibility of leaving an institution and living independently in the community depends not only on the availability of adequate support, but also on access to safe, accessible and affordable housing and to sufficient economic resources.
In this sense, Article 19 of the CRPD is directed at enabling the free development of one’s personality in a home of one’s own and with free interaction in the community (
From a rights-based perspective, therefore, access to housing cannot be left exclusively to market forces, since the effective exercise of the right to live independently in the community requires that adequate housing options are actually available to persons with disabilities. In this regard, it has been stated that States must ensure the availability of safe, accessible and affordable accommodation in the community, either by providing public housing or by offering rent subsidies to persons with disabilities, and it has been noted that for housing to be considered adequate, it must meet minimum criteria relating to legal security of tenure, the availability of services, materials, facilities and infrastructure, affordability, habitability, accessibility, location and cultural suitability (
Taking into account the general content of Article 28 CRPD, deinstitutionalisation also requires addressing poverty and social exclusion among persons with disabilities. Insufficient economic resources may increase the risk of institutionalisation and, at the same time, constitute a barrier to leaving institutional settings and establishing a life in the community. States must therefore ensure, among other measures, adequate income support to cover disability-related expenses (Ibid.: para. 86) and avoid financial arrangements for support services that undermine the effective exercise of the right to live independently in the community.
Reflection on support and care, from a rights-based perspective, must take into account its relational nature and must consider not only the rights of persons with disabilities who receive care, but also the rights of carers, which are, moreover, considered to be “inextricably linked”
It is therefore essential to transform the conditions in which support and care relationships take place. In relation to informal care, this requires adequate support for families and other persons providing unpaid care, as already emphasised. In relation to professional care and support, it requires greater investment in the sector and appropriate regulation and oversight to ensure fair, safe and dignified working conditions (
In any case, improving the conditions in which support and care are provided, caring for those who care, is therefore not external to the objectives of deinstitutionalisation. Rather, it is an important condition for building sustainable support systems capable of respecting the rights of persons with disabilities and enabling them to pursue their own life plans and to be fully included in the community.
The analysis developed in this paper shows that effective deinstitutionalisation in the field of disability cannot be reduced to the closure of institutions or the relocation of persons with disabilities to smaller or formally community-based settings. It requires a broader transformation of the institutional culture underpinning traditional care systems and, in particular, a shift from an assistencialist framework to a human rights-based approach centred on the recognition of persons with disabilities as rights-holders with choice and control over their own lives.
This transformation entails fundamental changes in the ethical and conceptual framework of support and care and requires particular attention to the interrelated rights to choose one’s way of life and exercise legal capacity, to inclusion in the community and accessibility, to support and personal assistance, and to housing and social protection. It also requires attention to the rights and conditions of carers and care workers, without displacing the rights, agency, will and preferences of persons with disabilities as the central normative reference point of deinstitutionalisation.
For these changes to result in effective deinstitutionalisation, however, they must be translated into legal frameworks, policies and support and care practices.
Admittedly, whilst legal changes are not in themselves sufficient to ensure the success of the deinstitutionalisation process, it is essential to have a robust legal framework in line with the rights-based approach that supports and guides the process (
The reform of national legal frameworks must therefore include the abolition of provisions that facilitate or permit institutionalisation on the grounds of disability and ensure the legal recognition, enforceability and effective protection of the rights identified above. It must also ensure that persons with disabilities have access to effective legal remedies against institutionalisation and discrimination on the grounds of disability. Furthermore, from the perspective of deinstitutionalisation outlined in this paper, legal reform must be comprehensive and holistic, extending beyond disability legislation and regulations on social services and care to other areas of law, including civil law, housing law, health law (including mental health), social protection, education and employment, among others (
Beyond regulatory changes, progress towards support systems based on a rights-based approach requires that this culture of rights truly permeates the care model and transforms it, which logically requires a paradigm shift in support and care practices.
With regard specifically to professional support and care, this demands new strategies, new skills and new professional roles aimed, in accordance with the human rights approach, at supporting the free choice of life plans and the full inclusion of persons with disabilities in the community.
In any case, to ensure, both during the transition period and after the implementation of the rights-based support model, that the new services do not reproduce the characteristics of the institutional culture, a substantial change in the service evaluation system is essential (
Finally, a critical element is to bring about a profound and widespread cultural change, which involves extending human rights education to various contexts; ensuring the training of professionals from diverse fields, not just those directly involved in care; educating families; empowering persons with disabilities; and raising awareness throughout the community about the rights of persons with disabilities and the importance of respecting their choices.
Ultimately, deinstitutionalisation should therefore be understood as a systemic transformation of the relationships, services, legal frameworks, social attitudes and conditions that shape the lives of persons with disabilities. Its success must be assessed not by the number or size of institutions that have been closed or transformed, but by the extent to which persons with disabilities effectively exercise choice and control over their own lives, receive the support they require, and participate in the community on an equal basis with others.
Profesora Titular de Filosofía del Derecho, Universidad Carlos III de Madrid, patricia.cuenca@der-pu.uc3m.es,
This publication is part of the R&D&I project
Various studies and reports have compared institutional and community-based care in terms of quality and costs, highlighting the clear advantages of the latter model over the former in both respects (
Among the first instruments to address the ‘transition’ from institutional care to local or community-based care, it is also worth mentioning the European Disability Strategy 2010–2020 and the Opinion of the European Economic and Social Committee adopted in 2015 on Long-term social care and deinstitutionalisation. More recently, it is worth mentioning 1) the European Pillar of Social Rights, adopted by the European institutions in 2017, in particular its principles 17 and 18 relating, respectively, to persons with disabilities and to long-term care; 2) the 2018 Opinion of the European Committee of the Regions on ‘Deinstitutionalisation of care systems at local and regional level’, specifically referring to persons with disabilities; 3) the new European Disability Strategy 2021–2030. Furthermore, at a more global level, the European Care Strategy adopted by the European Parliament in 2022 also reiterates the obligations and commitments of the European Union and the Member States regarding the transition from segregated institutional settings to community and family-based care, and the regulation of European Funds has played a central role in promoting the shift towards a community-based support model.
These sources perform different functions and have different legal status: while the provisions of the CRPD establish binding obligations for States Parties, the Committee’s General Comments, Guidelines, Concluding Observations and Views adopted in individual communications are used as interpretative materials, whereas reports and policy documents provide additional analytical and policy guidance.
According to the Committee, “Institutionalisation is a discriminatory practice against persons with disabilities, contrary to Article 5 of the Convention. It involves a de facto denial of the legal capacity of persons with disabilities, in breach of Article 12. It constitutes detention and deprivation of liberty based on disability, contrary to Article 14. States parties should recognise institutionalisation as a form of violence against persons with disabilities. It exposes persons with disabilities to forced medical intervention involving psychotropic medications, such as sedatives, mood stabilisers, electroconvulsive therapy and conversion therapy, infringing Articles 15, 16 and 17. It exposes persons with disabilities to the administration of drugs and other interventions without their free, prior and informed consent, in violation of Articles 15 and 25”.
It should nevertheless be noted that deinstitutionalisation has not historically been grounded exclusively, or necessarily, in a human rights approach. Earlier processes and arguments in favour of moving away from institutional forms of care have also been associated with other rationales, including quality of life, normalisation, the development of community and mainstream services, and changes in models of social and health care. The emergence and consolidation of the human rights model of disability, and particularly the adoption of the CRPD, have reframed deinstitutionalisation in explicitly rights-based terms (
In general terms, the human rights-based approach has been defined as a conceptual framework which, from a normative perspective, is grounded in international human rights standards and, from an operational perspective, is geared towards their promotion and protection; it has been developed particularly within the framework of development cooperation, with the reference being the consensus document The Human Rights-Based Approach to Development Cooperation: Towards a Common Understanding Among UN Agencies, adopted by United Nations cooperation agencies as a guide for their programmes and actions in this field. Within this framework, in the present paper the human rights approach is linked to a stronger philosophical and conceptual thesis on the person, dignity, situated freedom, care and community, coinciding with what
In the sense of
This aspect of the model is emphasised, for example, by the Office of the United Nations High Commissioner for Human Rights, 2023, cited above.
This issue arose precisely in the case of
Thus, it has been noted that Article 12 values mechanisms of (inter)dependent agency by guaranteeing the right to support in the exercise of legal capacity, recognising that every individual has the right to exercise their autonomy, but that this may be exercised with the help and assistance of others (
Indeed, “when no other options are available and families are the sole source of support, the autonomy of persons with disabilities and their family members is reduced. Those being supported have no choice or control over the assistance they require to pursue their life plans, and questions of overprotection and conflict of interest commonly arise”, Special Rapporteur on the rights of persons with disabilities, 2016, para. 20.
In its Views in Bellini v. Italy (CRPD/C/27/D/51/2018), the Committee considered that the lack of support for family carers constituted a violation of Article 23 and identified as appropriate support services: respite care or temporary replacement of the primary carer, psychological and social support measures, financial support, and other support options.
Certainly, “through public procurement law, States can reshape markets (if markets are relied upon) to ensure better outcomes for persons with disabilities. Clear standards can be developed, linking social support goals with procurement policies, gathering data to ensure compliance and imposing clear penalties for lack of compliance. Public procurement laws should reflect a vision of the type of services and support needed in the future and should give preference to smaller service organisations. Standards should include person-centred principles, decision support, choice and control, administrative practices such as seeking participant feedback, the inclusion of persons with disabilities as advisors, and workforce training. Standards should also be based on support approaches that have proven to be effective. Another approach that States may wish to consider is to designate a non-governmental entity to accredit disability service providers based on best practice standards”, Special Rapporteur on the rights of persons with disabilities, 2023: paras. 72 and 73.
In this regard, the
As the Office of the United Nations High Commissioner for Human Rights notes, these considerations relate to the Triple R (3R) framework, referred to in the International Labour Organization’s report Care Work and Care Jobs for the Future of Decent Work (2018), which states that care work must be Recognised and Redistributed, and that Unpaid care work must be Reduced. For its part,
On this point, I find the quality of life model referred to by the