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.
Ni komentarjev:
Objavite komentar