Basic features and principles of deinstitutionalisation process

 [This we wrote for the Macedonian report. Hope it is useful!]

Stages in transformation of an institution

 

10 crucial steps of transformation process

In order to perform deinstitutionalisation in a most effective and smooth way possible the European guidelines suggest the following 10 steps (CEG):

• Making the case for developing community-based alternatives to institutions
• Assessment of the situation
• Developing a strategy and an action plan
• Establishing the legal framework for community-based services
• Developing a range of services in the community
• Allocating financial, material and human resources
• Developing individual plans
• Supporting individuals and communities during transition
• Defining, monitoring and evaluating the quality of services
• Developing the workforce

On a micro level of an institution or a region, six main tasks need to be achieved. Firstly, already inside the institution, the relationships between users and staff have to democratise and the status of residents improved. That means implementing new ways of democratic decision making on wards, opening the institution for the community and taking users to the community. The transformation or substitution of an institution needs to be planed therefore a vision of deinstitutionalisation needs to be created. The process of creating a vision also needs to be a dialogical process and everyone living and working in the institution should go true a process of its appropriation.

 

Resettlements of users are the next and important step when the place of work for the staff changes as well. Usually the first resettlement are to intermediate structures and foster care for children but latter on independent living should be developed as well. While resettling residents of institutions a whole range of other services (housing, employment, personal assistance, education, etc.) for ex- residents but also for other people that need long term care in the community.  

During the whole process quality, on-site practical training needs to be provided to staff and users. Deinstitutionalisation is a process connected to the whole society therefore it has to be connected to and integrated in the community since the first day.

Principles of deinstitutionalisation

Guiding principles of deinstitutionalisation process are, inter alia:

A.    Inclusion into the community

B.    Fostering enabling approaches in working with people

C.    Independent community living

D.    Ordinary environments and Social Role Revaluation

E.     Participatory action and dialogue with all the stakeholder, empowerment of users and relatives.

F.      Investment in staff and secured employment

G.    Users participation, choice and control

H.    Personalisation of care

I.       No restraint and coercion

J.       No skimming

Inclusion and community are the two most important concepts guiding DI activities. We need to stick to their real and original meaning – that the deinstitutionalisation process must provide means for the people, hitherto excluded, re-join their communities, be accepted, regain the status of full citizenship and step into new, and valued social roles. The goal of not just planning the shift to the care in the community, but envisaging the real community care, i.e. the care by the community thus strengthening the community itself, the processes of solidarity and ideal of conviviality – living together, must be pursued.

To achieve this, it is absolutely necessary to move from the personal deficiency based ways of looking at people with disabilities to enabling approaches. The starting point of any action that would strive for inclusion must be the strength perspective; i.e. valuing the existence of people now residing in the institutions, seeing them as able and making it possible, even in the adverse circumstances, to exercise their faculties, above all the basic one of free will. At this point standardised institutional or community responses need to be replaced by personalised care defined and tailored to each person individually.

Independent community living is thus not a solitary experience, even less the independence must be measured by the personal and social capital or normalised able body or able mind. Conversely, enabling approach must mobilise the environment, the community and the carers to enable people with disabilities to exercise their will, to empower them to make choices, friends and meaningful action.

However, this must not be seen as something special, even less as something separating or segregating people with disabilities (and especially future ex-residents) from the rest of us. Ordinary living must be a benchmark of success of deinstitutionalisation, a criterion upon which the society will measure the outcomes of the process. It must provide people who will resettle from the institutions with possibilities to enter into really valued social roles, exit not only the institution, but also their stigmatised, devalued (invalid) roles.

Goals, outlined above, cannot be achieved without the action that creates dialogue between all the stakeholders, without creating common understanding and common goal. What may seem utopian can be achieved if we truly make the participation of the people most concerned possible. Thus, ways of empowerment of the residents and their near ones must be part and parcel of the process of deinstitutionalisation.

Deinstitutionalisation is an investment in people, not walls. However, it is not only an investment in residents of institutions or people with disabilities; it is an investment in the people working for them. Therefore, the staff of institutions and future community services need to get quality training, but most importantly, they need to be rewarded fairly and to have secured employment. Nobody must lose their employment; they just need to learn to work in different situations and with different methods.

Users’ participation is needed at all stages of deinstitutionalisation. They do not need to have choice and control over their own care, but they need to be the main actors of the planning, implementing and monitoring the reform on the national level.

Community living and service cannot reproduce any of the institutional culture therefore all measures of restrain, coercion and formal or informal punishment have to be abolished immediately. Deinstitutionalisation should provide means of positive discrimination especially for people with the most complex needs. Therefore, there should be no skimming; users with most complex needs should be leaving institution first.

Therefore, a quality deinstitutionalisation agenda must embrace the principles of real inclusion, enabling, independent community living, ordinary environments and Social Role Revaluation, participatory action and dialogue, empowerment, investment in staff and secured employment, users participation, choice and control, personalisation, no restraint and coercion and no skimming. It has to have a steering body on the national level and many organisational and methodical changes in the practice. The organisational changes need to involve all stakeholders and most importantly users and enable democratic joint decision-making. Retraining is needed not only for the staff working in institutions but also for other professionals that will be working with people returning from institutions. The knowledge and technology of deinstitutionalisation needs to be created in the transforming institutions and communities not in offices detached from the people.

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. For this blog Andreja Rafaelič is considered to be co-author.

Sources:

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

Flaker, V., Krstovski, V. (2017) Inception Report - Technical assistance support for the deinstitutionalisation process in social sector (EuropeAid/132633/C/SER/MULTI) European Union project; Skopje: A.E.S.A. Consortium & Alternative Consulting.