torek, 21. november 2017

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.



[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.

ponedeljek, 20. november 2017

Community care definitions[1]



 

Community care


One of the basic dimensions of deinstitutionalisation is the transition from institutional to community care. The new, alternative care provision has been named differently in different contexts: community based services, community mental health, community psychiatry, community nursing, community provision etc. While different nuances in meaning the common features of these terms is that it points to different, alternative location and diverse actors. The distinction can be made between the care in the community and the care by the community. First refers just to the change of location and not necessary of the actors, while the latter refers to the fact that care is not provided only by specialist services and to the fact that there is a communal process and gain in the new services provided. Former is a necessary condition of deinstitutionalisation and the latter an optimal achievement.

The latter means also a right of a user of being included in the community, which is emphasised in the UN Convention of the Rights of the Persons with disabilities.  The UN Committee on the Rights of Persons with Disabilities comments:

The right to be included in the community relates to the principle of full and effective inclusion and participation in society as enshrined in, among others, article 3 (c) of the Convention. It includes living a full social life and having access to all services offered to the public and to support services offered to persons with disabilities to enable them be fully included and participate in all spheres of social life. These services can, among others, relate to housing, transport, shopping, education, employment, recreational activities and all other facilities and services offered to the public, including social media. The right also includes, having access to all measures and events of political and cultural life in the community, among others public meetings, sports events, cultural and religious festivals and any other activity in which the person with disability wishes to participate.” (United Nations 2017: 5).


Independent living


Independent living is the key concept and the major goal of deinstitutionalisation. The UN Committee on the Rights of Persons with Disabilities defines it:

Independent living or living independently means that individuals with disabilities are provided with all necessary means enabling them to exercise choice and control over their lives and make all decisions concerning their lives. Personal autonomy and self-determination is fundamental to independent living, including access to transport, information, communication and personal assistance, place of residence, daily routine, habits, decent employment, personal relationships, clothing, nutrition, hygiene and health care, religious, cultural and sexual and reproductive rights. These activities are linked to the development of a person’s identity and personality: where we live, with whom, what we eat, whether we like to sleep in or go to bed late at night, be inside or outdoors, have a tablecloth and candles on the table, have pets or listen to music. Such actions and decisions constitute who we are.

Independent living is an essential part of the individual’s autonomy and freedom, and does not necessarily mean living alone. It should also not be interpreted solely as the ability of carrying out daily activities by oneself. Rather, it should be regarded as the freedom to choice and control, in line with the respect for inherent dignity and individual autonomy, as enshrined in article 3 (a) of the Convention. Independence as a form of personal autonomy means that the person with disability is not deprived of the opportunity of choice and control regarding personal lifestyle and daily activities. (United Nations 2017: 4)


Independent living is, often misunderstood for absence of dependence on the support of another. In the framework of deinstitutionalisation and long-term care, it means quite the opposite – it is pointing to the need of support to live independently but also to have control over the support needed. Therefore, there is need to emphasise this, like in the term – independent living with support. To distinguish from the institutional life sometimes (independent) community living is used.

 

Person centred care


Person centred care is the main instrument to achieve the independent living. It is also among the main objectives of deinstitutionalisation to organise and establish services that are tailored to the needs of each person and replace the total standardised response of institutions.


“Traditionally, support has been provided in a service-centred way; that is, trying to fit the person into existing service options. Instead, the needs and preferences of the person and the child should be at the centre and the support should be tailored to their individual situation and should offer personal choices. This means that users and families should also be actively involved in the design and the evaluation of services.” (CEG)

Deinstitutionalisation and consequent development of community services required new ways of planning, organising and funding the new provision for the person in an ordinary environment. New methods of planning and providing care were based on the tradition of classic casework, enriching and making more potent by providing resources (previously held by institutional care), organisational power and comprehensive approach. Case management, care management, independent brokerage, personalised care packages and others were types of care provision developed to individualise and personalise care provision. Their joint characteristic is that they all take in consideration human needs, ambitions and wishes; tailor the care to each individual, increasing the choice, control, and power of users.

The main tool of personalisation or person centred care is personal planning (formerly termed also as individual planning). The main features of the method are that it is proactive, empowering, setting the goals rather than reacting to ‘problems’, using user’s perspective and introducing the user from the strengths perspective, seeing the user as competent and able and seeking the ways of enabling him or her, taking the life-world perspective and whole life into the account. A personal plan is It is on one hand the expression of user’s will but also a work plan for the providers of what support is needed to achieve the quality of life set by the user.  Personal plans are often also the basis for the planning of services, their organisation and founding.

 

Long-term care


Long-term care is a relatively new outlook on organising and funding services to people who need continuous, comprehensive, organised and coordinated care. In many ways, it is the other side of the medal of deinstitutionalisation since it emphasises the right to live in community, promotes the independent living and sustains the dignity of people in long-term distress. Through budget provision or special social insurance, it provides the financial resource in a more universalistic manner posits the personal priorities in the foreground and seeks to integrate social, health and education services in a continuous and coordinated provision.

 

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, as well as 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




[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.