Second wave of deinstitutionalisation in Macedonia – group homes for adults

The second wave of deinstitutionalisation started in 2008, when the first Deinstitutionalisation Strategy 2008–2018 was adopted and resettlement of first cohort of 192 residents from Demir Kapija was planned in a project funded by MHI. The project was partially successful, in terms of resettled residents (only a third of planned residents has been resettled), but it was also incomplete in many other aspects. The residents were moved into two locations, one in the nearby town of Negotino and the other group to Skopje. The new provider of the services was the parents’ organisation Poraka of Negotino, which now operates in both locations – in Negotino and Skopje.

The services they provide are group homes (euphemistically called ‘housing units’) and day centres. The ones in Skopje used to be dispersed around the city, but are now concentrated in a satellite village of Volkovo, just outside the city (at the end of a city bus line). They are on two locations of the same village, both providing two units for about ten people, one of them having also a facility of a day centre, which is frequented mainly by the residents but also by a few users (about three) who live at home.

The day activities seem to be very intense (working in the garden, tending to animals, providing services to the community) and despite the relative remoteness of the facility, it provides residents with daily activities in the centre of the town (individual and group outings to cultural, sport, entertainment and other events). The atmosphere between staff and residents seems to be very cordial and in good spirits and there are many visitors and volunteers engaged in the living of the groups.

Design of the project

Almost simultaneously with the adopting of the National Deinstitutionalisation Strategy[1], the MoLSP accepted the offer from Mental Health Initiative – Budapest for an action targeted towards Demir Kapija. It was an initiative for a more systematic approach in resettlement of persons with intellectual disability from the Special Institute Demir Kapija.

According to the Implementation plan for establishing community-based services for persons with disabilities ‘The Community for All Initiative – Macedonia’, the project was focused on developing a comprehensive system of community support services, thus transforming the system of institutionalised care. Within the project, community based housing services were planned to be established all over Macedonia, and total number of 192 users of Demir Kapija to be resettled in the established services (64 users per year in 2008, 2009 and 2010). In addition to housing services, the need for other community – based services such as leisure and occupational activities was recognised. All programs were planned to be highly individualised, flexible and responsive to the changing needs of the users. Individualisation and flexibility in programming was to be ensured through the development of individual support plans (i.e. Person Centred Planning). Through the initial and practical training of the staff and managers to work in new community-based services, this project was supposed to increase capacity of individuals and organisations in Macedonia to provide community-based supports and services to people with disabilities.

Mental Health Initiative – Budapest with the Association for Promotion of Inclusion – Croatia were the leading implementation partners, in cooperation with the Ministry of Labour of Social Policy.  The Institute for Social Affairs, centres for social work and the Demir Kapija were involved in the working groups and in the implementation teams. Initially centres for social work were intended to organise and provide services. There capacity and willingness were, however, insufficient and the NGOs were called in. There were several organisations involved (Poraka Negotino, Polio Plus), but gradually all the provision got to be provided by Poraka Negotino. The first small group homes created in Skopje were managed by Polio Plus, but shortly after they were established, this NGO has withdrawn from the project (because of disagreements with project leaders). The responsibility for the functioning of the small group homes was then given to centre for social work Skopje. Couple of years later, MoLSP decided that it should be transferred to Poraka Negotino.  

One of the goals of the project was to promote individualised support schemes for resettled users form Demir Kapija. The creation and implementation of a person centred plan for every person supported by the housing service were the foundation for all of the activities that are provided in the community. The goal of the person centred planning was to determine individual needs and to structure the support according to those needs. The person centred planning details the level of support each individual needs in order to live as independently as possible, and to achieve the highest possible level of self-determination.

The shift from the medical to the social model of disability has changed focus from diagnosis (mild, moderate, severe, profound intellectual disabilities) to determining the level of support an individual needs to function in his social environment (by individual assessment of capabilities and training for independent living skills).

Extent of the resettlement

Even though within the project 192 users were planned to be resettled from Demir Kapija, at the moment there are 81 users (43 in Negotino and 38 in Skopje) in the group homes of Poraka Negotino. The majority of the users are adults, above the age of 18 years, with intellectual disabilities of different level and combined disabilities such intellectual disabilities with mental health issues, physical disability, sensory disability, etc. According the regional distribution, there are users from 19 municipalities.

The total number of resettled users over the years in the group homes was 93.

• from Demir Kapija – 67 users (31 in Skopje – Volkovo and 36 in Negotino).
• from Topansko pole – 4 users (3 in Negotino and 1 in Skopje)
• from Psychiatric hospital Bardovci – 2 users in Skopje
• from Psychiatric hospital Negorci – 1 user in Skopje
• from Home for old people – Prilep – 3 users in Negotino
• from foster families – 1 user in Skopje
• form 11 Oktomvri – 1 user in Skopje
• from Čičino selo[2] – 1 user in Skopje
• from original families – 13 users (10 in Skopje and 3 in Negotino)

Demir Kapija institution was the main source of resettlement, but there were also residents coming from a variety of other institutions, including mental hospitals and old age home. A substantial number was admitted directly from their homes. Eleven (11) out of the 93 users have passed away (eight in Skopje and three in Volkovo). One user was resettled to the original family. One user that could not adapt was readmitted to Demir Kapija.

Total share of the resettlement of users of SI Demir Kapija in the group homes was 23%.

Figure 1: Resettlement in group homes by years

Source: Poraka Negotino response to authors

The resettlements happened on average 8,4 a year; if we take the most intensive period (until 2013) the rate was 59 residents or 9,8 a year. The main peak and achievement was in 2009 with 27 residents resettled. After 2013 there was a lapse of two years and resettlement have resumed in last two years.

Methods used

Different profiles of workers were involved in the deinstitutionalisation project conducted by Poraka Negotino: special educators and rehabilitators, pedagogues, psychologists, social workers, accountant, lawyer, people with secondary education, parents, brothers and sisters.

The model has been developed by Inclusion Croatia and it was considered by MHI as successful and appropriate at that time.  At the beginning of the project, a team composed of representatives from SI Demir Kapija, Inclusion Croatia and Poraka Negotino conducted initial interviews with the users that were planned for resettlement.

The methods used within the resettlement process wee: personal planning based on the initial interviews with the users (they were asked where they want to live and with whom), teamwork (SI Demir Kapija, Inclusion Croatia and Poraka Negotino), risk analysis.[3]   

Services to the users provided by Poraka Negotino during the project included: training and preparation for independent living, health care, social care, special education treatment, individual work, psychomotor re-education, workshops, work related activities. Poraka Negotino established in the process two day centres for the users of the group homes that are providing possibilities for different types of creative activities. Also, social integration in the community through work engagement and participation at community events. These services are provided still now.  

Special attention was given to the work with families and the importance of family support. In addition, re-establishing the connection between the users and their families was (and still is) done constantly. 

Deinstitutionalisation unit at MoLSP

With the creation of the Unit for deinstitutionalisation in the Sector for Social Protection in the MoLSP in 2009, the following activities were undertaken:

• Consultation meeting with the leadership of the SI Demir Kapija for smooth and transparent implementation of the deinstitutionalisation process;
• SI Demir Kapija was asked to establish working group which would be directly involved in the process and be in charge of the preparation of the users for resettlement, in cooperation with the centres for social work; 
• All centres for social work were visited and introduced to the deinstitutionalisation;
• After this, during the resettlement of the users there was an active cooperation of the centres for social work, SI Demir Kapija and the service provider (Poraka Negotino).[4]

In 2014, the Institute for Social Affairs has developed the ‘Procedures for referral of users in housing units for organised living with support’, but unfortunately, these procedures were not adequately applied in the work of centres for social work, as it would have been if the process of deinstitutionalisation would be implemented according to planned dynamics.

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The second wave of deinstitutionalisation in Macedonia was more efficient than the first one. The protagonist have resettled a higher number of residents in a shorter time span. It was also distinctly different in its structure and methods used. It was led, not just sponsored, by a foreign agency and with a pronounced participation of the local NGOs. The main means of the resettlement was moving to a group home, not to a foster care, as was the case in the first wave. Also the methods of working were different, involving more up-to-date ones (as personal planning elements) and leaving behind robust diagnostic and training procedures that took previously a lot of time and gave little effect.

The making of deinstitutionalisation was marked also with more conflict and disagreement, also more resistance on the part of institution’s staff. And also by a change in the desired model of the transformation. The initial intention was to transform the institution into services, i.e. to apply the conversion model, or more precisely a mixed model, using the institution’s potentials in Negotino and transferring residents to Skopje using the NGO capacities – sic substitution model.

A resentment and resistance, however, surfaced in Demir Kapija. There a various, but uncomplete ad biased, accounts of how this happened. It is always difficult to deal appropriately with resistance to change. The result was a break-up of already tenuous relationship; each side went on with their business and was founding this among other on the resentments. The substitution was born out of inability to perform conversion. Did these events stop the process as whole or the processes withered with lack of funding or political interest is not clear. It is clearer, though that the stoppage of the process produced a kind of stale-mate which allowed this division to continue. While it is understandable that both parties were after the break up accusing each other of mishandling (which had a kernel of truth) etc. myths were created on both sides that are still destructive today.

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, Vlado Krstovski is considered to be co-author.

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[1] For its contents and implementation cf. chapters 1 and 6.

[2] Čičino Selo is a facility near Skopje, which was used in the past for several purposes (refugee camp, emergency shelter, accommodation in crisis).

[3] The risk analysis was used to persuade the residents in the process of the resettlement that the life outside the institution was safe and better. This had to be done since the staff of the institution, in the wave of resentment of the resettlement process were frightening the residents marked for resettlement by possible failures and perils of community living.

[4] This is how the action was described by an official from MoLSP. However, this is true for the past, while now the cooperation described is down to very formal procedures and lack real collaboration. Even in the past, as we can deduce and are describing below, the operation did not run smoothly and many resistances have surfaced and needed to be overcome.