Introduction

When we look at the history of social work, we can see substantial changes and advances in the approach to people with disabilities. While in the distant past people with disabilities were seen as a burden, modernization has substantially changed this perspective. Today, the human-rights approach prevails, which takes individual needs into account and allows people to live independently and fully, and to access community-based services.

The beginnings of deinstitutionalization in Europe can be dated to the mid-20th century. The main motivation for deinstitutionalization is the struggle for the observance of basic human rights and against the isolation of these persons. It is promoted that support and services should be provided at the community level so that these people can live independently and integrate fully into society. The essence of deinstitutionalization is the gradual abolition of institutions and the shifting of resources to the development of alternative forms of support, including support in the home environment and the development of community services.

When speaking of deinstitutionalization, we must necessarily also speak about independent living, focusing on the fact that the right to independent living is a basic human right that emphasizes that every human being has the right to live their life freely, without unnecessary restrictions, and according to their own wishes. People cannot be distinguished from or discriminated against based on their age, sex, health status, ethnic origin, or other grounds.

Each person has the right to freely decide about their own life, to choose their place of residence, to study, to work, to develop and maintain social relationships with family, friends, and the community, to have access to resources and support that will allow them to achieve their goals.

Assumptions and legislative premises of deinstitutionalization

Deinstitutionalization means a change in the system of support for people who depend on help from others. The transformation of social services and the shift from institutional care to community services is an essential part of this process. Creating the conditions for independent living and improving the quality of life of people who depend on the help of others is a goal that, as signatories of various international documents, we are committed to achieving. A prerequisite for successful realization of this goal is the gradual reduction and abolition of institutional care and the creation of targeted support.

Through social policy, the state must create basic conditions for the independent living of citizens with disabilities and integrate them into social life. Inclusion becomes possible when the state ensures equal access conditions to everything in the same degree as people without disabilities have. (Kožárová et al. 2018).

The rights of persons with disabilities are set out in many national and international documents and in European Union legislation. At least some of them are listed here. The European Social Charter in Article 15 regulates the right of persons with disabilities to independence, integration, and participation in society. The EU Disability Rights Strategy for 2021–2030 sets out goals and priorities of EU actions such as accessibility, quality of life, non-discrimination, and the promotion of rights of persons with disabilities. The strategy aims to ensure that all persons with disabilities in Europe can exercise their rights, have equal opportunities, equal access to participation in social and economic life, can decide for themselves where, how, and with whom they live, can move freely in the EU regardless of their need for support, and do not have to experience discrimination. (European Commission, 2024)

In 2021, the European Commission found long-term limitations in everyday activities due to health issues. Among the 27 EU member states, Slovakia ranked 23rd. Social policy expenditures in the EU account for 22% of GDP, with an average of 2.2% of GDP allocated to disability. In 2020, Slovakia invested 1.6% of GDP in disability. Denmark spends the most on this area, with 5% of GDP, while Malta spends the least at 0.6% of GDP. (European Court of Auditors, 2023).

Among domestic legislation we can mention Act No. 460/1992 Coll., the Act No. 447/2008 Coll. on financial contributions for compensation for severe disability, which supports the social inclusion of persons with severe disability through their active participation in society while preserving human dignity. The system of compensation contributions for social consequences through repeated and one-off grants contributes to preventing the use of institutional services, especially residential forms, and helps the client return to their natural home environment. Act No. 448/2008 Coll. on Social Services regulates legal relationships in the provision of social services. The goal of the National Programme for the development of living conditions of persons with disabilities for 2021–2030 is to create optimal conditions for implementation of the UN Convention on the Rights of Persons with Disabilities. The National Strategy for Deinstitutionalization of the system of social services and alternative care for 2021 states that the primary aim of deinstitutionalization in the Slovak Republic is to create and secure conditions for independent living of people dependent on support in the natural social environment of the community.

The World Health Organization prepared a document, the Global Strategy for People-Centred and Integrated Health Services 2016–2026, which calls for a paradigm shift in perceptions of healthcare toward a person-centred approach. A person-centred approach is precisely what can ensure inclusion, better quality of life, financial sustainability, and efficiency. At the international level, the key legal framework is the UN Convention on the Rights of Persons with Disabilities, ratified by the Slovak Republic in 2010. The Convention is based on a holistic approach and emphasizes the guarantee of equal rights for persons with disabilities, including the right to live in the community with the same opportunities and choices as others. The social model sees disability as the result of various barriers that prevent inclusion in society.

The Slovak Republic joined the global trend of systematically eliminating institutional isolation and segregation of people requiring long-term help and care in specialized facilities at the end of 2011. Institutional care is problematic for many reasons, such as high cost, staff shortages, low-quality care, and isolation of people from the surrounding world. (Morávková, Šimonová, Mojtová, 2021).

The European Parliament recalls that under Article 19 of the Convention on the Rights of Persons with Disabilities, persons with disabilities have the right to independent living and to adequate community services. It calls on the Commission and member states to phase out institutional care options as soon as possible, and to ensure a transition from institutional and other segregated environments to a system that enables social participation and where services are provided in the community with full regard for the individual needs, will, and preferences of the person with a disability. It emphasizes that stereotypes, disability-based discrimination (ableism), and false beliefs that hinder persons with disabilities from living independently must be removed and that their contribution to society should be promoted. It also emphasizes that access to the labour market is essential for persons with disabilities to live independently and fully participate in society. It expresses regret about the lack of accessible and affordable housing, which is a major barrier to independent living, and stresses that independent community living must be strengthened and achieved as an alternative to institutional care. The Parliament calls on the Commission and member states to adopt a person-centred approach and adequate support needed to ensure full inclusion of persons with disabilities. Relevant EU funds should focus on supporting inclusive environments, services, and tools, with deinstitutionalization prioritized, including strong support for personal assistance and independent living. (European Parliament, 2022).

Personal assistance is not a privilege; it is a basic human right so that persons with disabilities can also have equal conditions for independent living. It is something automatically available to people without disabilities, but people with disabilities cannot fully function in society without it and would otherwise remain isolated.

Personal assistance is available in 33 Council of Europe countries, but 97% of respondents report that access is insufficient or needs improvement. (European Parliament, 2022). General Comment No. 5 on independent living and inclusion in society requires governments to provide adequate support services to family caregivers. Personal assistance is user-directed, available to the person with a disability, for whom it represents a means to independent living. Funding must be based on the individual needs of each person. A person with a disability should decide who, how, when, where, and in what manner to use personal assistance. Persons with disabilities should control personal assistance themselves. (UN, 2017).

The European Network on Independent Living (ENIL), 2023, states that in the UN Convention and deinstitutionalization guidelines, state parties are called upon to address disability discrimination with attention to women with disabilities, who are increasingly victims of violence and discrimination than men, and to older people and disabled children, who are often exposed to institutionalization and segregation. According to the deinstitutionalization guidelines, independent-living support services should be available, accessible, acceptable, and affordable. Too often such services exist only on paper, while people with disabilities have no real access. This can be due to procedures that are inaccessible, unfair, and non-transparent. Authorities often block access instead of ensuring support for everyone who needs it. There are also cases where authorities arbitrarily withdraw services or benefits.

Based on General Comment No. 5, support for persons with disabilities should be assessed through an individual approach. The assessment should consider the person’s will and preferences and ensure full participation of these persons in the decision-making process. The UN Committee on the Rights of Persons with Disabilities considers it necessary that authorities do not burden persons with disabilities with constant and overly demanding assessments. Some countries leave assessment entirely to healthcare professionals or municipal and state officials who often do not understand what a disability model based on human rights entails. With respect to disability assessment, administrative procedures are often unfair and non-transparent. This process can be lengthy and burdensome, and in some cases humiliating. Methods used may also be limiting and fail to reflect real barriers persons with disabilities face in daily life. Assessments are largely based solely on medical criteria instead of using a human-rights approach in preparing assessments, without consultation with disabled persons. Many people with disabilities have difficulty passing assessment procedures because authorities act as gatekeepers to access. Other persistent barriers include long waiting times and undignified processes, poor diagnosis of hidden disabilities, delayed or absent assessments of women with disabilities, and insufficient levels of support. (European Disability Forum, 2021).

Institutional care is more costly for the state—the total economic cost per client in 2023, based on a random sample of institutions, is on average EUR 1,833.26. Without investing sufficient resources in social policy, it is difficult to achieve independent living as guaranteed in Article 19 of the Convention on the Rights of Persons with Disabilities. Independent living is the right of everyone to choose the type of social service that is appropriate for them. Every person with a disability has the right not to be placed in an institution, even when they require constant daily care. With appropriate state support, a person with severe disabilities can remain in a natural environment. Whether this is caregiver service or personal assistance, the choice of the person who will provide the service must be the choice of that same person in need. The fact that a user of personal assistance should have the right to choose or hire anyone as a personal assistant, including family members, is also set out in the Principles of Personal Assistance adopted in Oakland in 1991. (Principles of Personal Assistance, 1991).

Independent living

Independent living means that even a person who depends on the help of others can live their life according to their own wishes and freely decide where and with whom they want to live. Independent living guarantees the exercise of basic rights such as the right to education, the right to work, the ability to plan one’s activities and free time, to have personal assistance or other support (a caregiver).

Adolf D. Ratzka PhD, founder and director of the Swedish Institute for Independent Living, states that there is an enormous gap between what the UN Convention on the Rights of Persons with Disabilities requires of our governments and what we actually receive from them. We need genuine personal assistance, not false substitutes. The Convention clearly states that the amount and quality of personal assistance services cannot depend on a country’s budget priorities or on public opinion about the quality of life we are said to “deserve.” Personal assistance policy aligned with the Convention provides “all necessary means enabling users to exercise choice and control over their lives, promoting a life and inclusion in the community with the same choices as others.” Any government programme not based on individual assessment of needs and individual life circumstances, which groups us into one of only a few categories of needs or limits our support to a fixed number of hours, must be categorically rejected. Why? At best, such a scheme may provide enough assistance hours for eating, personal hygiene, and dressing—the minimum needed for survival according to the medical model of disability. Such policy may keep us alive, but it does not give us life. It cannot provide enough hours of help for us to have “choices equal to those of others.” It does not allow us to use personal assistance as the most important tool to compensate for our disabilities, grow, and develop as human beings, or to claim our rightful place in family, community, and society. (Ratzka, 2018).

The rules that make people with disabilities more independent are based on these principles:

  • People with disabilities are first and foremost citizens, not patients.
  • People with disabilities are experts in their own needs.
  • People with disabilities require the same degree of freedom of choice and self-determination—that is, what other people consider a given.

For people with disabilities to move out of institutions, housing availability, community services, and personal assistance are needed. Personal assistance also has a preventive role, helping people avoid placement in institutions. (Ratzka, 2020).

Integration problems

Funds are invested in institutions instead of developing options for people with disabilities to live independently. The central idea is the possibility to choose how, where, and with whom they want to live—this should be an individual choice. (UN, 2017).

The greatest barriers to integration can be considered the lack of community services, insufficient state support (personal assistance, caregiver service, respite services, etc.), and the non-targeted nature of compensation benefits—due to the assessment system, benefits are not always provided adequately and according to individual client needs, and in practice benefits are sometimes not granted to those who need them most, thereby endangering integration. Additional problems include inadequate awareness among clients and professionals, including lack of knowledge of the UN Convention on the Rights of Persons with Disabilities. Major barriers are also physical, informational, and psychological barriers, often rooted in lack of awareness, which means broader public awareness must also increase. Another problem is misunderstanding the essence of independent living and ignorance of human rights. People who create laws, without lived experience, can only poorly understand the daily problems and obstacles people with disabilities face. Therefore, people with severe disabilities must be included in decision-making with the slogan “nothing about us without us,” as called for by member states and the European Parliament, which also calls for their participation in political and public life. State support is missing so that these people can live independently in their communities. The Committee recommends that contracting states no longer allocate public budget resources to facilities, but to community services.

Problems also arise in the provision of personal assistance and caregiver allowance. In personal assistance, various organizations have long pointed out that personal assistance is not an employment relationship. We also negatively view the fact that a personal assistant can mostly be only a non-family person, while a family member can do it only in a limited scope (maximum 4 hours a day) and only for activities precisely specified in the law; this model was adopted from Sweden, where such restrictions do not exist. Thus, free choice—also regulated in the Principles of Personal Assistance—is missing. A similar problem exists in caregiver services, where caregiving can be performed only by a family member or by a person with at least temporary residence at the care recipient’s home address. Such legally defined restrictions, which do not account for specific situations and needs in real practice, often cause major problems, hinder integration, and can lead to forced institutional placement. A major issue is also income limits for the caregiver and the person receiving care. Multiple service packages should be available, and the specific person should be considered when choosing which service to use. The state must invest more in supporting family care.

Institutional versus family care

When comparing life in an institution with life in a home environment, we need to rely on several principles. Independent living cannot be achieved in residential facilities. The greatest downsides of institutional care are: others determine when and what we do, others schedule our free time, and we must adapt to the facility’s daily rhythm, losing work habits and social skills. The advantages of a family environment are: I decide for myself when and what I do, I plan my free time myself, and I decide myself who will help me, when, and what services I will use.

As noted above, the state does not create suitable conditions for independent living. Economically justified costs in institutions are much higher than the support of different forms of home-care services. Independent living cannot be realized in any institution. To implement an independent life, supportive systems are needed: accessible public services, affordable housing instead of institutions, assistive technologies (aids), and support services such as personal assistance. It is the state’s task to create the necessary social conditions for them to function.

In 2020, the UN Committee on the Rights of Persons with Disabilities clearly stated that newly state-led supported housing does not meet human-rights requirements for independent living and social inclusion. Although integration is the goal, people with disabilities are still segregated and discriminated. Supported housing alone cannot create the social conditions required for independent living. These homes are eerily similar to former institutions, only smaller. In the absence of alternatives, large-capacity institutions experience strong pressure for placement from families, despite the low quality of care. (Környei, 2022).

Personal assistance also helps people with severe disabilities become more fully themselves compared with life in an institution. Personal assistance provides freedom; the person decides for themselves when to get up, what to do during the day, and when to go to sleep. It enables employment, travel, meeting friends, planning time, and feeling independent. Anyone can become a person with disability, and therefore these people, like everyone else, have the same needs to be included in society and the same need to feel recognized, respected, and loved. Personal assistance and independent living are human rights; their denial means a violation of the UN Convention. Disabled people have the same ambitions, priorities, and dreams as anyone else, they are the best experts on their own needs and desires. They are capable and have the right to decide what affects their lives, and this should not be done by municipal and state authorities. In Sweden, personal assistance saved taxpayers billions. One hour of personal assistance costs taxpayers much less than one hour of residential services. Moreover, the same amount of money used for personal assistance provides a higher quality of life than residential facilities. (Ratzka, 2015).

The goal of independent living for people with severe disabilities is that these persons receive support in the form and environment they choose for themselves, as they prefer. A priority of every democratic state is to protect families as much as possible and provide legal certainty. The state is committed to protecting older family members, people with disabilities, and children in families through the creation of a system of social-legal protection. (Hanogi 2016).

Social work is a field into which we need to invest through sound social policy. In a state where social policy is highly developed, social problems are fewer and such a society is more developed. It is an investment that can return multiple times over. Institutions isolate people with disabilities from society and determine and limit their daily lives through institutional conditions. They end up in a passive “care-receiver” role, and their previous abilities worsen over time, which is easily attributed to disability. Violations of law and the repression of their rights remain hidden by the closed nature of institutions. In institutional care, residents receive all services in one package and have no right to make independent decisions about their lives. More community services and adequate support for home care, including caregiver services and personal assistance, can bring society closer to what is called independent living.

Conclusion

By shifting to community services and a human-rights-based approach, it is possible to improve the quality of life of people dependent on another person’s help, which is the primary goal of deinstitutionalization.

Life in an institution can never be a full substitute for life in a family environment. A person living in institutions gradually loses skills that could otherwise be retained. Institutional life prevents people from personality development; lack of information leads to misunderstanding of the problems and essence of what independent living means.

These persons should have access to individualized support and workplace adaptations, as they have a right to employment support that guarantees a dignified life and to services that allow them to participate in the labor market and society. The disadvantages they face go far beyond employment, since their social and financial situation in the EU is significantly worse than that of people without disabilities. The European Parliament calls on member states to adopt effective and concrete measures to promote equality, diversity, and horizontal inclusion of persons with disabilities and their families into all parts of society, including through personal assistance, independent living, social protection, increased awareness, and barrier-free environments. It also reiterates that labor market integration is essential for social inclusion and equal opportunities, while it also offers significant economic opportunities for the financial independence of persons with disabilities and benefits the wider economy. (European Parliament, 2022).

The benefits of investing in people are a return on financial outlays in the form of increased employment among people with disabilities, and improved financial situations for those who provide care. By increasing the employment of persons with disabilities and the household income at the same time, purchasing power rises, which has a positive impact on the state budget. Another benefit is harmonious family relations and reduced divorces, since severe financial strain caused by reduced income in a family with a member with disability is the most common reason for divorce. The state is obliged to protect families and create harmonious conditions for their development, supporting them as much as possible.

The most important benefit is improved quality of life and personal development. If appropriate conditions are created, even a person who depends on the help of another person can be beneficial to society, can develop their potential, and grow personally.

Author: Mária Szegfüová PhDr. Bc. Vysoká škola zdravotníctva a sociálnej práce sv. Alžbety v Bratislave -doktorandka Univerzita Komenského – právnická fakulta, Bratislava -magisterské štúdium The author works as a social worker, lecturer, and supervisor. She devotes her scientific and professional activity to human rights, justice, public administration, and social policy. For a long time she has drawn attention to problems of integration and the implementation of the UN Convention on the Rights of Persons with Disabilities.

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