Housing needs in deinstitutionalisation

Housing is one of the most important needs to address in the process of DI and developing community care. Besides providing the shelter from the atmospheric adversities, the housing provides many important functions in people’s lives. A house or a flat is a place where people can construct their identities (by choice of living arrangements, furniture, decoration etc. and by forming relationships, family by co-residents), it is an important place of social activities, a place to invite people and be invited to and it is a place of intimacy and privacy as well. It is also a place to store one’s belongings (a personal museum) and an important item in constructing a formal virtual reality and contractual power – a place of permanent address (Flaker et al. 2013).

In deinstitutionalisation, issue of housing is one of the most important practical questions: where will people going out of an institution live. The question is burning since many of the residents have lost their homes and for many the housing problems were crucial moment in becoming a resident of the institutions. A little number has a property, but needs to be renovated or adapted for use. Some would like to return to their families, but conditions (be it material or social – broken relationships) hardly permit this. Even if there were premises available most of the residents would need support in the issues related to having a home. They would need support in maintenance of a flat or a house, in developing and maintaining privacy and intimacy, in choosing eventual flat mates and handling the relationship with them. Above all, in order to have a home, they would need a secure tenure (or ownership) in order to exert the right of having a home of one’s own (Flaker et al. 2013).

Housing needs

Need of secure tenure

Support in maintenance and housework

Adapting the house for personal requirements

Choice of co-residents or living alone

Need for privacy and intimacy, but also to be able to host friends and acquaintances

Need of permanent address

Need for temporary accommodation – transition period, training and rehabilitation, respite, crisis accommodation

Possibility for new forms of cohabitation (shared household, housing communities and cooperatives)

Source: Flaker et al., 2013.

For users that are not residents of institutions picture is more favourable. According to UNDP research ( 5-7) majority of disabled people have decent housing conditions. Majority lives in homes with three or more rooms, however, especially in urban areas (31 % as opposed to 12%) live in accommodation that has two rooms or less. Mostly they live in owned accommodation (research does not specify whether it is owned by a person with disability or their family), however there is a margin of respondents (6-17 %) who do not specify the nature of the accommodation ownership or would not answer the question of the number of rooms (2-7 %). This indicates that there might be housing problems for something like 5-10 % of people who are labelled with disability. Therefore, we can assume that there is about 1000 or more people who have problems with housing. This number is probably larger if we include the people who have inappropriate housing (poor conditions, arrangements not suiting their disability, living with people they do not want to live with or have problems with neighbours[1]).

For other groups of vulnerable people the proportions could be worse. It is known that mental health problems can be connected with housing issues (as cause or a consequence of mental distress). For old people in general housing problem is not so big, often there are cases that old people have more than plenty living space. However, there are some who live in bad condition, are evicted or cannot maintain their accommodation.

For the people in need who at the moment do not reside in the institutions access to housing is of virtual importance in the perspective of independent living. Most of those family members who believe that a person with disabilities can live independently consider that besides the employment housing is needed (UNDP N: 52).

We can conclude that housing needs are among the most important if not the most important to address in the process of DI. Most of the residents of the institutions would need new housing arrangements, a big number (almost all) of would be ex-residents will need some input in arranging accommodation either in their families or their property. For a relatively small proportion, but still substantial number of people in need of care and support access to secure accommodation would alleviate their distress and provide possibilities of independent living. A very rough estimate is that there will be needed a housing stock of more than 2000 units in Macedonia.

To come to the better and more precise assessment of needs in numbers but also in type of housing needs more research and investigation is needed that will estimate existing housing stock owned by users and services, circumstances of accommodation of the residents and community services user, preferable and appropriate housing arrangements, support needed to maintain the accommodation, and the needs regarding the use of flats or houses. This should also include the accessibility issues and the possibilities for use of assistive technologies.

Claimer: This blog is intended 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.   

Reference

Flaker, Vito, Vera Grebenc, Tadeja Kodele, Jana Mali & Mojca Urek (2013) 'Where do you live? - Housing and long-term care (Kje živiš? - Nastanitev in dolgotrajna oskrba)', Dialogue in Praxis, Volume 2 (15), Issue 1—2 (24—25), 2013, pp. 111—132

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[1] Persons with disabilities are the most discriminated against in the provision of adequate housing and their inclusion in the community. 27% of the responders stated that they would not like as a neighbour person with intellectual disability; while people with physical disabilities are more acceptable as neighbours than those with intellectual disabilities. See publication: Naumovska Vojnovska A. Grozdanova E. Kasumi A. Kikerekova T. Sajkovska B. Stamenkovska Z, Stojanovik V., Trenchevska J., Useinova I., Fakovikl N., Cvetkovska S., “Guidelines for implementation of the national strategy for equal opportunities and non-discrimination base on ethnic age, disability and gender”, British Council in Macedonia, 2013, p. 25, http://www.britishcouncil.mk/sites/britishcouncil.mk/files/vodic_nsen_mk.pdf quoted in  ANED SP: 21

Intermediate structures[1]

 

Intermediary structures are forms of care provision that lie between institutional care and independent living in the community. Most known and common forms of intermediate structures are group homes and day centres. Group homes or similar residential care facilities are way of organising care, in which groups of people, children or adults, live together in a house or a flat with support from staff. Day centres or similar occupational facilities (clubs, drop-in centres, sheltered workshops etc.) are ways of organising care, in which users of this facilities spend part of the day occupied by activities of productive, recreational or socialising nature.

Intermediary structures are almost necessary first step in deinstitutionalisation since they provide an immediate and relatively quick way of resettling residents into community. They usually enable more ordinary, homelike and integrated environment. These structures, do, however, have streaks of collective living that may lead to practices akin to institutional ones. Therefore, they must be seen only as a temporary provision leading to more independent, personalised and included living arrangements.

Group homes

The Council of Europe Commissioner for Human Rights has raised a number of criticisms of group homes. He points out that group homes often do not differ much from institutions as they restrict the control of the people over their lives and isolate them from the community, despite being physically located within a residential area. Clustering children or adults in the community draws attention to them as a group rather than as individuals and sets them apart from the rest of the neighbourhood. In addition, linking support services with housing in group homes limits the choice of the people about where they can live. Systematic placement of children with disabilities in group homes without ensuring equal access to prevention, re-integration or family-based care should be avoided at all costs. (CEG*)

At the same time, small-scale residential care in the form of small group homes in family-like environments can sometimes be used as temporary or last resort, if it is in the best interest of the child (for example, in a case of continuous placement breakdown), or if it is based on the child’s or young person’s own informed decision. The use of such settings should always be limited to cases where a properly conducted, professional assessment has deemed them appropriate, necessary and constructive for the individual child concerned and in their best interest. The objective of any residential care should be to “provide temporary care and to contribute actively to the child’s family reintegration or, if this is not possible, to secure their stable care in an alternative family setting”.

For older people, residential arrangements such as group homes are sometimes considered preferred options. People live in their own flat with their own belongings while benefiting from common services (such as a restaurant and other facilities) and enjoy the company of peers. However, a range of alternative community-based options needs to be provided in order to ensure that people have real choice of where and how to live. It must also be noted that the ‘choice’ of an older person to move to a group facility and distance themselves from the rest of society is likely to be influenced by society’s view of older people as a ‘burden’. In summary, group homes could be developed as part of a deinstitutionalisation strategy, but this should clearly be for a small minority of users for whom an assessment shows this is a positive care/support choice. They should not be seen as “the default solution that presumes to embody the principles of the right to live in the community«. More efforts should be invested in removing barriers in the environment, the provision of accessible housing, the development of supported living arrangements and of alternative family-based care options for children.

 

Day centres

Day-care centres for adults and older people provide advice, support, meals and some aspects of personal care, as well as social and cultural activities. For older and especially frail people, they may be of considerable advantage as they can be effective in combating loneliness and isolation. Factors which determine how beneficial day-care centres can be include ease of accessibility, affordability, the choice of services to be used and, of course, users’ involvement in the planning, implementation and evaluation of services to be offered.

 

Separation of housing and support

The type and level of support individuals receive should not be determined by where they live, but by their needs and requirements. Support should follow the person wherever they live; even high levels of support can be provided in ordinary housing. Separating the provision of housing and support will ensure that individuals will not lose their support should they decide to change their living arrangements, for whatever reason.

Dispersed housing should have priority over campus or cluster-style housing. ‘Dispersed housing’ refers to “apartments and houses of the same types and sizes as the majority of the population live in, scattered throughout residential neighbourhoods among the rest of the population”. Campus or cluster-style housing is used to describe “provision of a complex of houses on a specialised campus, or homes for people with disabilities (or older people) which are clustered in a specific housing estate or street.” Between the two approaches, dispersed housing has been shown to provide better quality outcomes for its inhabitants. The disadvantages of campus/cluster housing identified include: the size of the living unit, less home-like setting and furnishings, lower staffing ratios, greater use of an-psychotic and an-depressant medication, less choice; and smaller social networks. The exceptions to this are some situations where people choose to live communally in village communities, where these then serve a mixed population of disabled and able-bodied individuals.

 

Sources:

These definitions are drawn mainly from Common European Guidelines on Transition from Institutional to Community-based Care, on the UN Convention on Rights of People with Disabilities and the General Comments of its article 19, and on our work done for the groundwork of deinstitutionalisation in Slovenia including the manual on rapid assessment and response to the needs related to deinstitutionalisation and long-term care. 

References:

• 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  
• 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
• Flaker, V., Rafaelič, A., Bezjak, S., Ficko, K., Grebenc, V., Mali, J., Ošlaj, A., Ramovš, J., Ratajc, S., Suhadolnik, I., Urek, M., Žitek, N. v sodelovanju z Dimovski, V., Kastelic, A., Pfeiffer, j. (2015), Izhodišča dezinstitucionalizacije v Republiki Sloveniji (Končno poročilo, verzija 3.2). (študija po naročilu Ministrstva za delo, družino, socialne zadeve in enake možnosti, omogočila EU z uporabo Evropskega socialnega sklada), Ljubljana: Fakulteta za socialno delo. 
• Flaker, V., Rafaelič, A., Ficko, K. & Meduza (2014) Hitra ocena potreb in storitev za dolgotrajno oskrbo in dezinstitucionalizacijo zavodov za dolgotrajno osrkbo na področju duševnega zdravja in intelektualnih ovir (DEZ-HOPS), interno poročilo, Verzija 1.0. december 2015, Fakulteta za socialno delo.

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[1] This blog is intended 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.