Right to live in the community (UNCRPD – article 19) main vehicle of deinstitutionalisation

The UNCRPD [1] sets a whole range of rights of people with disabilities and requires from state parties to take measures to implement the rights in everyday life of people with disabilities.  The optional protocol to the convention, also signed by Macedonia, gives the users bases for taking legal procedures if the rights from the convention are not respected. 

It is the first time that a convention directly sets independent living in the community as a human rights. The article 19 states:

Living independently and being included in the community

States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

The article recognizes the right to choose the place of residency and people they want to live with. Institutions are exactly the opposite of that, they force people to live in environments they have not chosen and with people, they do not know or did not choose to live with. The article also requires the development of community services for everyone with disabilities – no matter how complex or intensive their needs are. An important feature is that the article does not focus only on nursing needs of people but defines independent living as inclusive and integrated community life. Therefore, not only supportive services should be developed but also mainstream services should be accessible and tailored to people with disabilities.

In order for people with disabilities to enjoy and exercise their human rights from the UNCRPD deinstitutionalisation is a necessity.  “The Committee on the Rights of Persons with Disabilities has noted advancements in the past decade implementing article 19. However, the Committee observes a gap between the goals and spirit of article 19 and the scope of its implementation. Some of the remaining barriers are the following:

a)      Denial of legal capacity, either through formal laws and practices or de facto by substitute decision-making about living arrangements;
b)      Inadequacy of social support and protection schemes for ensuring living independently within the community;
c)       Inadequacy of legal frameworks and budget allocations aimed at providing personal assistance and individualized support;
d)      Physical and regulatory institutionalization, including of children and forced treatment in all its forms;
e)      Lack of deinstitutionalization strategies and plans and continued investments into institutional care settings;
f)       Negative attitudes, stigma and stereotypes preventing persons with disabilities from being included in the community and accessing available assistance;
g)      Misconceptions about the right to living independently within the community;
h)      Lack of available, acceptable, affordable, accessible and adaptable services and facilities, such as transport, health care, schools, public spaces, housing, theatres, cinemas, goods and services and public buildings;
i)        Lack of adequate monitoring mechanisms for ensuring the appropriate implementation of article 19, including the participation of representative organizations of persons with disabilities;
j)        Insufficient mainstreaming of disability in general budget allocations; and
k)      Inappropriate decentralization, resulting in disparities between local authorities and unequal chances of living independently within the community in a State party. (UN 2017: 3-4)"

One of the main issues with the convention is that too often we remain just on the declarative level. A strategy with a strong implementation plan should be striving to firstly implement the rights recognized by the UNCPRD and simultaneously address all the recommendations and observations of the committee.   The list recommendations of the UN Committee reads almost as the programme for DI outlined in the Common European Guidelines. Both point out that things must be done and conditions changed in order for people with disabilities to attain their rights and have a chance to live in the community like most of the people do. Deinstitutionalisation is a positive programme to address the deficits in social, political and legal arrangements that the recommendations list.

References:

United Nations Convention on the Rights of Persons with Disabilities (2007) [On line] Available at: http://www.un.org/disabilities/convention/conventionfull.shtml 

United Nations (2017) General comment on article 19: Living independently and being included in the community. Committee on the Rights of Persons with Disabilities Eighteenth session 14-31 August 2017 CRPD/C/18/1

---

[1] This blog is intentended as a part of Situation Analysis and Assessment/ Evaluation Report of Implementation of National Strategy on Deinstitutionalisation 2008-2018 which will be soon presented to the public within the EU framework project Technical assistance support for the deinstitutionalization process in social sector. For this blog Andreja Rafaelič is considered to be co-author.

Legal basis of deinstitutionalisation in the international documents (a list)

Deinstitutionalisation[1] is an objective and aim laid out in plethora of international documents. A particularly clear (and binding) statement is presented in the Article 19 of the UN Convention on the Rights of Persons with Disabilities, which recognises the right to independent living and inclusion in the community.  The list below is the compilation of the documents presented in the Common European Guidelines with some documents added by authors. The documents are listed according to the hierarchy of legal acts. First documents on the UN level are listed, then Council of Europe documents and at the end the documents issued by European Union.[2]

Table 1: International documents on the UN level

Document	Content	Target group
Universal declaration of Human Rights	Article 29 sets out everyone’s obligation to their community, which is the only place where personal development is possible. The right to freedom, personal dignity, privacy, marriage, work and equal payment for the same work to everyone is also acknowledged.	All user groups
UN Convention on the Rights of Persons with Disabilities	Article 19 sets out the right of people with disabilities to “live in the community with choices equal to others” and requires that states develop “a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”. Children with disabilities must have access to all human rights and fundamental freedoms “on an equal basis with other children” especially in the area of education.	People with disabilities (children and adults), People with mental health problems
UN Principles for the protection of persons with mental illness and the improvement of mental health care	The principles state that every person with a mental illness has the right “to live and work, as far as possible, in the community”.	People with mental health problems
Recommendations of the World Health Organisation (WHO)	WHO has called for a continued shift away from the use of psychiatric hospitals and long-stay institutions to the provision of community care. It argued that community-based care produces better outcomes when it comes to quality of life, that it better respects human rights and that it is more cost-effective than institutionalisation. The WHO also highlighted the importance of establish housing and employment possibilities.	People with mental health problems
UN Convention on the Rights of the Child	The Preamble states that “for the full and harmonious development of his or her personality” the child should “grow up in a family environment, in an atmosphere of happiness, love and understanding”. In addition, it outlines a range of children’s rights which, taken together, suggest that most children should live with and be cared for by their birth families (Articles 9 and 7). It is the primary responsibility of parents to raise their children and it is the responsibility of the state to support parents in order that they can fulfil that responsibility (Article 18). Children have the right to protection from harm and abuse (Article 19), to an education (Article 28) and to adequate healthcare (Article 24) but they simultaneously have the right to be raised by their family. Where their family cannot provide the care they need, despite the provision of adequate support by the State, the child has the right to substitute family care (Article 20). Children with intellectual or physical disabilities have a right to live in “conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community” (Article 23).	Children
International covenant on economic, social and cultural rights UN	Acknowledges the right to work, education and free participation in cultural life in community for everyone regardless of their disability. (Article 7, 26 and 27)	All user groups
UN Guidelines for the Alternative Care of Children	The Guidelines require that in countries where there still are institutions, “alternatives should be developed in the context of an overall deinstitutionalisation strategy, with precise goals and objectives, which will allow for their progressive elimination.” They add that any decisions to establish new institutions should take full account of the deinstitutionalisation objective and strategy. The Guidelines also highlight that the removal of the children from the family “should be seen as a measure of last resort and should, whenever possible, be temporary and for the shortest possible duration.” When it comes to young children, especially those under the age of three, alternative care should be provided in family-based settings. Exceptions to this principle should be permitted only in case of emergency or “for a predetermined and very limited duration, with planned family reintegration or other appropriate long-term care solution as its outcome.”	Children
Recommendations of the Committee on the Rights of the Child	The Committee has encouraged states to “invest in and support forms of alternative care that can ensure security, continuity of care and affection, and the opportunity for young children to form long-term attachments based on mutual trust and respect, for example through fostering, adoption and support for members of extended families.” The Committee has also urged states to set up programmes for deinstitutionalisation of children with disabilities, phasing out institutional placements and replacing these forms of care with “a comprehensive network of community provision”. In terms of prevention, the Committee has clarified that “children with disabilities are best cared for and nurtured within their own family environment provided that the family is adequately provided for in all aspects”. Examples of family support services highlighted by the Committee include the “education of parent/s and siblings, not only on the disability and its causes but also on each child’s unique physical and mental requirements; psychological support that is sensitive to the stress and difficulties imposed on families of children with disabilities; material support in the form of special allowances as well as consumable supplies and necessary equipment […] necessary for the child with a disability to live a dignified, self-reliant lifestyle, and be fully included in the family and community”.	Children
WHO European Declaration on the Health of Children and Young People with Intellectual Disabilities and their Families	The Declaration highlights the negative impact of residential institutions on the health and development on children and young people, and calls for the replacement of institutions with high-quality community support.	Children with disabilities
Recommendations of the Committee on Economic, Social and Cultural Rights	In a General Comment, the Committee states that “national policies should help older people to continue to live in their own homes as long as possible, through the restoration, development and improvement of homes and their adaptation to the ability of those persons to gain access to and use them.« Housing rights are seen as an integral part of economic, social and cultural rights within the international human rights instruments. The Committee on Economic, Social and Cultural Rights and the European Committee on Social Rights have established the concepts of minimum core obligations and progressive realisation of rights according to available resources in the context of the right to an adequate standard of living.	Older people, All user groups
UN Principles for Older Persons (the Madrid Declaration)  and the UN General Recommendation on Older Women and Protection of their Human Rights	Both documents support the fundamental right of all people to remain integrated in and participate in society, calling for actions to support older people’s independence and autonomy and for services “to assist people to reach their optimum level of function”.	Older people
Regional Implementation of the International Action Plan on Ageing – the UNECE Strategy	Based on the Madrid Declaration, the Economic Commission for Europe of the United Nations (UNECE) developed a Regional Implementation Strategy with ten commitments, including “to ensure full integration and participation of older persons in society” and “to strive to ensure quality of life at all ages and maintain independent living including health and well-being”.	Older people

Table 2: Council of Europe documents supporting deinstitutionalisation

European Social Charter (revised)	The Revised Charter sets out “the right of persons with disabilities to independence, social integration and participation in the life of the community” and requires parties to develop the necessary measures to achieve this right (Article 15). Rights of the child are set out in Articles 16 and 17, which state the importance of promoting family life and the child’s right to grow up in an “environment which encourages the full development of their personality and of their physical and mental capacities”. The importance of developing community-based services for older people is highlighted in Article 23 of the Revised Charter, which requires parties to put in place the necessary measures “to enable older people to choose their life-style freely and to lead independent lives in familiar surroundings for as long as they wish and are able, by means of the provision of housing suited to their needs and state of health or of adequate support for adapted housing [and] the health care and services necessitated by their state”.	All user groups
Council of Europe Disability Action Plan 2006–201576	Action line No. 8 of the Action Plan calls on the Member States to “ensure a coordinated approach in the provision of community-based quality support services to enable people with disabilities to live in their communities and enhance their quality of life”. The cross-cutting action on Children and Young People with Disabilities requires that responsible authorities carefully assess the needs of children with disabilities and their families “with a view to providing measures of support which enable children to grow up with their families, to be included in the community and local children’s life and activities”. Similarly, the section of the Action Plan focused on the ageing of people with disabilities suggests coordinated action should be taken to enable them “to remain in their community to the greatest extent possible”.	People with disabilities (including children and older people), People with mental health problems
Parliamentary Assembly Resolution on Access to rights for people with disabilities and their full and active participation in society	The Resolution invites member states to “…commit themselves to the process of deinstitutionalisation by reorganising services and reallocating resources from institutions to community-based services”.	People with disabilities (children and adults), People with mental health problems
Committee of Ministers Recommendation on deinstitutionalisation and community living of children with disabilities78	The Recommendation states that countries should no longer place children in institutional care. It lists a number of actions that should be taken to make the transition to community-based care, including development of a “national action plan and a timetable […] to phase out institutional placements and replace these forms of care with a comprehensive network of community provision. Community-based services should be developed and integrated with other elements of comprehensive programmes to allow children with disabilities to live in the community.”	Children with disabilities
Committee of Ministers Recommendation on the rights of children living in residential institutions79	The Recommendation sets out the basic principles for the placement of children in residential care, their rights while in residential care, as well as the guidelines and quality standards which should be taken into account. Among the principles, the Recommendation states that “preventive measures of support for children and families in accordance with their special needs should be provided as far as possible”. Furthermore, “the placement of a child should remain the exception and have as the primary objective the best interests of the child and his or her successful social integration or re-integration as soon as possible”.	Children
Committee of Ministers Recommendation on children’s rights and social services friendly to children and families	The Recommendation addresses “children’s rights in social service planning, delivery and evaluation” and highlights that these should be adapted to their and their families’ needs. It calls on Member States to develop “programmes for de-institutionalisation [...] in coordination with efforts to increase family and community-based care services, especially for children under the age of three and children with disabilities”.	Children
Issue papers of the Council of Europe Human Rights Commissioner	In his issue paper on human rights and disability, the Commissioner recommended that states develop the necessary services in the community, stop new admissions to institutions and “allocate sufficient resources to provide adequate health care, rehabilitation and social services in the community instead”. Indicators for monitoring the implementation of the right to live in the community are set out in the 2012 issue paper on the right of people with disabilities to live independently and be included in the community.	People with disabilities (children and adults), People with mental health problems

Table 3: Documents at European Union level

Charter of Fundamental Rights of the European Union	Sets out the right to live independently for people with disabilities (Article 26) and older people (Article 25), and the need to act in the best interests of the child in all actions relating to children (Article 24). Rights to participate in the life of the community, as well as social, cultural and occupational integration are also included, given their importance to achieving a life of dignity and independence.	All user groups
Europe 2020 Strategy	One of the goals of this strategy is to reduce the number of people living in poverty and social exclusion in the EU by 20 million. To achieve this target, the European Commission established the European Platform against Poverty and Social Exclusion as one of its flagship initiatives. With poverty among the underlying factors in the placement of children in institutional care in countries in economic transition, the process of developing community-based services must go hand-in-hand with other anti-poverty and social inclusion measures. The Platform and the Europe 2020 governance build on the previously established coordination and mutual learning among the Member States in the form of the Open Method of Coordination on social protection and social inclusion (Social OMC). These EU processes can help raise awareness, monitor progress and facilitate mutual learning through the European Semester, peer reviews and discussions within the Social Protection Committee. The Platform also addresses access to housing. This is of particular relevance to people with disabilities, as the mainstream housing market does not cater to their needs in terms of accessibility. It is also relevant to children, as many families are forced to place their children in institutions due to lack of housing.	All user groups
European Disability Strategy 2010–2020	This Strategy presents a framework for action at the European Union level in support of national activities. Achieving full participation of people with disabilities in society by providing quality community-based services, including personal assistance, is a goal of the strategy. In relation to this, the European Commission plans to support national activities to achieve the transition from institutional to community-based care. This includes: • the use of Structural Funds and the Rural Development Fund for workforce training; • adaptation of social infrastructure, • development of personal assistance funding schemes, • promotion of good working conditions for professional carers; and • support for families and informal carers. The Strategy also intends to raise awareness of the situation of people with disabilities in residential institutions, in particular children and older people In addition to the Disability Strategy, the EU has a Pact on Mental Health and Well-being and is in the process of developing a Joint Action on Mental Health and Well-being, which will include the evolution of community-based services and socially-inclusive mental health approaches as one of its objectives.	People with disabilities (children and adults) People with mental health problems
Proposed Structural Funds Regulations 2014–2020	The proposed Regulations list transition from institutional to community-based care as a thematic priority. They state that in particular the European Regional Development Fund and the European Social Fund should be used to facilitate this process. The Structural Funds Regulation, notably the European Social Fund, calls for the end to expansion of institutional care in Europe and promote quality community based and family-based care.   The ESF should not support any action that contributes to segregation or social exclusion. Also, EU legislation for Cohesion Policy for 2014-2020 explicitly mentions deinstitutionalisation as a priority in the use of the European Structural Fund and the European Regional Development Fund.  (The use of Structural Funds is covered in more detail in the accompanying Toolkit to the Guidelines.)	All user groups
European Charter of Rights and Responsibilities of Older People in need of Long-Term Care	The Charter was developed by a group of organisations from ten countries, with the support of the European DAPHNE III Programme. Its aim is to set up a common reference framework that can be used across the European Union to promote the wellbeing and dignity of older dependent people. The Charter comes with a guide for carers, long-term care providers, social services and policy makers. It includes suggestions and recommendations as to how the Charter can be implemented.	Old age
The Common European Guidelines on the Transition from Institutional to Community-based Care and Toolkit on the Use of European Union Funds for the Transition from Institutional to Community-based Care	These two documents are not legally binding, they are guidelines, especially for the decision makers, on how to stage the DI programme and how to use the European fund to do this. They are good, precise, comprehensive and yet concise account of definitions, processes, organisational approaches and methods that are used in the deinstitutionalisation. Although not a legal document, they are morally and politically binding and expressing the expectations of the EU how to implement deinstitutionalisation, setting some benchmarks of its effective implementation and providing advice and tip for practical work.	All users groups

European Expert Group on the Transition from Institutional to Community-based Care (2012) Common European Guidelines on the Transition from Institutional to Community-based Care (Guidance on implementing and supporting a sustained transition from institutional care to family-based and community-based alternatives for children, persons with disabilities, persons with mental health problems and older persons in Europe), Brussels. [On line] Available at: deinstitutionalisationguide.eu/wp-content/uploads/2012/12/2012-12-07-Guidelines-11-123-2012-FINAL-WEB-VERSION.pdf

---

[1] This blog is intended as a part of Situation Analysis and Assessment/ Evaluation Report of Implementation of National Strategy on Deinstitutionalisation 2008-2018 that will be soon presented to the public within the EU framework project Technical assistance support for the deinstitutionalization process in social sector. For this blog Andreja Rafaelič, Katarina Ficko and Anže Trček are considered to be co-authors.

[2] If you know any other international document that should be added to the list, please let the authors know.