Inependent Living and Yugoslav Experience

INEPENDENT LIVING AND YUGOSLAV* EXPERIENCE

* Federal Republic of Yugoslavia, has been now constituted as State with name Union of Serbia and Monte Negro

by Gordana Rajkov, 2003-03

Center for Independent Living of Serbia,
Presented at the European Network on Independent Living (ENIL) conference in Southampton, England, 7-9 March 2003

(Another presentation at the conference: Belli, Raffaello. 2003-03. "Independent Living and some Italian Experiences.")

SITUATION ANALYSIS

Regional crises and general socio-economic decline over the past decade have left the Yugoslav population largely impoverished, making FRY one of the poorest countries in Europe. Despite the fact that one third of the population lives below the poverty line of one dollar per day, the nature and extent of poverty in Yugoslavia is poorly documented. Quality of poverty data is likely to improve during the Poverty Reduction Strategy Paper process that will be completed for Serbia by June 2003. It is less certain that the process will generate an equally better understanding of marginalisation and ways in which different groups are contributing to and/or are affected by prejudice and bias. The unfortunate reality in Serbia is that marginalised groups have to compete with each other for the limited attention span of the public and the officials alike. In Serbia, as in other countries in transition, issues of social exclusion are dealt with in order of political prioritisation and in response to internal and external pressures. The issue and status of 150,000 – 300,000 Roma and over 500,000 refugees and IDPs, for instance, rank higher in the eye of the public than the 760,000 disabled people or approximately 10% of the total population. The three groups are facing different obstacles to active participation and social integration. To a large extent, difficulties are commensurate with a relative inability of a group to articulate a political voice as ‘special issue voters’ and low prioritization by the donor community. Thus far, disabled people were often co-opted in a quasi-nongovernmental institutional framework that nurtured a culture of dependency on the state, institutions and the ‘other’.

Due to ‘blind spots’ in knowledge, skills, systems and procedures, some of the traditional and experienced disabled people’s organisations (DPO’s) have become vulnerable in a changed environment that requires them to professionalise and adjust to state of the art development practices. With a very few exceptions, DPO’s are diagnose-bound, i.e. organized around a specific type of disability.

More often than not, they take a needs based, rather than a rights-based approach to membership and contextual issues. This approach fails to produce a sustained impact as it focuses on symptoms, not causes of marginalisation. A further obstacle to an improved performance of DPO’s is their lack of access to peer consultation, knowledge transfer and exchange opportunities with DPO’s in the region and in Western Europe. Hence, a tremendous human potential that lies in DPO membership has yet to surface, catalysed by first hand peer experience and other fresh inputs.

From the perspective of disabled people, the Serbian society today is a charitable tutor that defines disability as ‘a problem’ and disabled people as ‘patients’.

INDEPENDENT LIVING

The philosophy of independent living is still a new area that have not yet taken root in Serbia. Unfortunately, very few disabled people in Yugoslavia have a professional personal assistant. Small number are either 'cared for' by home-helps who are employed and paid for by the State and whose assistance often fails to correspond to the wants and needs of the disabled. Moreover, home-help service is available only in three Serbian cities. The service has been designed to assist the elderly and it was expanded to disabled people. Helpers either come at different times, without prior consultation with beneficiaries or, on certain days, fail to show up or inform their clients about their absence. The disabled then remain stranded in bed, helpless and eventually adjust to disincentives in planning their own lives.

Alternatively, many disabled people are 'cared for' in institutions, but mainly for the visual or intelectual impairment. There are approximately 12.000 severely physically disabled people in Serbia and a single Residential Institution for physically disabled people in Belgrade has the capacity to accommodate 90 residents. Thus, a vast majority is cared for by their families, locked in a permanent child-parent relationship to deal with tradeoffs between love and dependency on ‘kin sacrifice’. Physically disabled without access to household support are most affected.

Typically, they end-up in residential institutions for elderly people, regardless of their young age. Alternatively, they are institutionalised together with people with learning difficulties.

In each of those scenaria, disabled people are deprived of control over their lives. The learned helplessness has a detrimental impact on all areas of a person's life. Due to low self-esteem, disabled people lack motivation to make the most of their human and social rights, capabilities and responsibilities. Social and environmental barriers prevent many disabled people from accessing the education system. As a result of lower education, chances for employment are lower than in other social groups. Over time, compounding factors of marginalisation start to reinforce each other, resulting in a vicious circle of economic and social dependency.

Lack of adequate support services that could stimulate active involvement of disabled people prevents even the potential ‘winners’ to take the lead on behalf of a larger number of disabled people. Some disabled people can afford to close the PAS gap as they are able to rely on social capital or personal finances. However, this is not an option for a vast majority of disabled people in Serbia.

CENTRE FOR INDEPENDENT LIVING OF SERBIA

Although many people with disabilities in Serbia have tried and succeded to organize independent living on individual bases for many years, it was never viewed as an option in the mainstream social policy. The first ideas on the Independent Living Phylosophy have come to Yugoslavia, in 1966, when the Centre for Independent Living of Serbia was set up. The key person in that process was Gordana Rajkov, who brought hear Irish experience on IL, where she was involved in CIL Dublin work.

Center for Independent Living has been formed in Belgrade in 1996 by disabled people on cross- disability basis. The mission of CIL is to promote the philosophy of independent living and create conditions for its implementation in Serbia.

Center’s aims include:

• Working towards creation of conditions for independent living of disabled people in Serbia, especially including setting up a new models for out-institutional support for disabled people (personal assistant service)
• Working towards creation of accessible environment, housing and public transport
• Gathering and disseminating data and information on the phylosophy of independent living of disabled people
• Putting effort into and working towards the realization of basic human rights of disabled people
• Promotion of creative potentials of disabled people and putting efforts into their self- empowerment and building of their self- confidence
• Promotion of social approach to disability, especially in the fields of economic, social and housing policy
• Participation in the work of ENIL and cooperation with other CILs worldwide
• Since 1966, the Centre for Independent Living is a leader in Serbia’s struggle to come to terms with disability. The Centre gathers people with disabilities who have a first hand experience in developing and putting to practice the philosophy of independent living. Based on that shared personal experience, the Centre’s experts are painfully aware of differences in quality of life for disabled individuals in terms of access to personal assistant. A core activity of the Centre for Independent Living is to conduct an on-going assessment of availability and gaps in support services for severely disabled people.
• The Center started with 12 founding members, while curretly it is gathering more then 250 people from different parts of Serbia. In an attempt to decentralise and expand the organisation’s spatial coverage, the Centre has branched out to 6 cities in Serbia.

AWARENESS RAISING ON INDEPENDENT LIVING

Since its establishing in 1996, the Centre has accomplished a great number of different projects and activities, aimed to raise awareness on Independent Living and initiate activities towards its achievement in Serbia. All the projects of the Centre have been development oriented working towards information provission, skills development and strengthening of disabled people and improvement of the quality of their lives.

Taking into consideration the need for promoting the idea of independent living of disabled people, the Centre was concentrated on translations, publishing and disemination of foreign publications relevant for this matter. For example, with the Oxfam financial support Centre published translations of the publications “Disability - Investment not Burden” (the conclusions from the international conference with the same name, held in Dublin, in 1995). As well as that Centre has developed the productive international cooperations, included the participation of representatives of the Centre for independent living of Dublin in number of seminars and the workshops that was organized by the Centre. As well as that, in cooperation with partners from Ireland, Centre has organized the training and work for personal assistants from FRY and Bosnia (Republika Srpska) in Ireland.

Over the past 2 years, CIL also conducted educational and awareness raising activities on the Phylosophy of Independent Living and preconditions for that (including PA service). More then then 30 workshops was organized in over 20 cities in Serbia, involving more then 500 people, both disabled and non-disabled, spreading the whole idea all over Serbia, both to disability commuunity and to local authorities and national government.

FIRST EXPERIMENTAL PA SERVICE IN SERBIA

A core activity of the Center for Independent Living of Serbia is to conduct an on-going assessment of availability and gaps in support services for severely disabled people. During 2000 and 2001, with the financial support of Oxfam, the Centre organized the experimental project of personal assistants service in Belgrade, the first of this kind in FRY , running paralel research programme on personal assistance service work and preconditions necessary for its mainstreaming. The research results on the pilot programme service, as the alternative form of the support service for disabled people, were published in a special publication. The promotion of the publication, that attracted a great attention of the public, was held under the auspices and with financial support of Ministry for social affairs of Serbia, with the participation of Mrs Gordana Matkovic, the minister for social welfare of Serbia.

Some of the highlights of the pre-test project include:

• PAS is a new service in Serbia and although improvements in service users’ quality of life have been documented, the timeframe was too short for real changes to occur; service users stated that more time would have enabled them to recognize and identify real needs that could feed into more defined job descriptions and schedules for their Pas
• Both users and PA’s showed interest in training and education activities provided in the pre-test. However, training activities included in the project were perceived as insufficient and they have started too late, i.e. after the start up of service provision. Participants in the project were mainly leaders in disability movement (10 of them) who are either currently active or were involved in the work of disabled people’s organisations. The fact that such a group expressed interest in more education and training, signals that there is a strongly felt need for an organized training process rather than ad hoc training sessions.
• The project showed that almost all participants miss social communication skills. Thanks to the personal assistants, many of them were able to run their own errands - go shopping, attend a medical examination, visit friends or go to a theatre. Even these simple and basic everyday activities were characterized as life changing experiences by PAS users.

The lessons learned from the pre-test include:

• Longer timeframe is required to enable Users-Leaders to get sufficient and lasting experience that could change their quality of life. At the same time, a longer term project will generate more trustworthy results and analysis required for successful advocacy efforts aimed at mainstreaming PAS and ensuring sustainability of the investment.
• Project impact can be strengthened through a set of simultaneous and coordinated activities in several cities in Serbia.
• Good preparatory activities are key to successful implementation. Given the complexity of the PAS project, a three month-long preparation is required before personal assistants can start to work. It is necessary to organize orientation and training for both service providers and users in advance, to enable them to get basic knowledge needed for recruitment of PA’s, time planning and management of this new relationship.
• A sustainable livelihood for the assistants in the pilot phase (1 – 2 years), including professional and career development opportunities and exchange of experience would help address some of the job market imperfections and strengthen focus on selection of PA’s and their performance monitoring.
• Tradeoffs between the focus on numbers and on quality monitoring of the process are emphasized in this type of a project. Whereas a larger number of beneficiaries would seem to generate a greater benefit, it might actually reduce the overall impact that can be achieved with a smaller, well selected and well monitored group of users and PA’s.

NEW PILOT PROJECT ON PAS IN SERBIA

Having in mind the experience Center has gathered in the experimental project, Center continued to develop and researc possibilities for running real pilot project on PAS, performing at the same time lot of advocay work for different stakeholders.

Eventually in September 2002. Center has successed to get funding for the new pilot project, which will last for 2 years. The project is going to be funded by Irish government (Ireland Aid), and will be implemented together with American Humanitarian Agency Catolic Relief Service – CRS. This project has received official approval from the Ministry of Social Affairs of the Republic of Serbia, and CIL will be implementing partner, having the managarial responsibilities for the project as well. The preparation work has already started, and the official launch of the project would be performed by the Irish Ambassador ti the OSCE, on March 14th 2003. in Belgrade,

Project Aim is to support independent living and full civic participation of disabled people and their associations in Serbia.

Project Objectives

1. Establish the first consumer controlled personal assistance service in Serbia, as a key aspect of independent living of the disabled people.

2. Enhance the skill base of disabled people fundamental to their own independent living and full civic participation

3. Build rights-based civic coalitions of disability organizations, other NGOs, civil society organizations and citizens to support community-based advocacy efforts for social inclusion of disabled people

The project will be implemented in five segments:

(1) Induction - 3 month-long preparatory period

(2) Action Programme – 21 months of running the personal assistance service in practice, including additional training for disabled people, their Personal Assistants (PA’s) and disabled people’s organisations (DPO’s).

(3) Participatory Action Research (PAR) - research plan design over a 3 month period and PAR implementation over 18 months (overlaps with implementation)

(4) Lobbying, advocacy and coalition building for mainstreaming PAS in regular social and welfare systems and social inclusion of disabled people - second half of the project, last 12 months (draws from and complements PAS and PAR implementation)

(5) Evaluation -finalising research findings and producing the evaluation report – final quarter of project duration

Advocacy will be a crucial part of the project, its sustainability and the mainstreaming of PAS. It will build on a series of cross-cutting activities, namely training, the PAR study, peer consultations and cross-disability initiatives, implemented during the project life. However, the intensive advocacy and campaigning activities will be organized in year two of project implementation. The main aim of advocacy efforts is the inclusion of a PAS model adjusted to Serbia as one option in mainstream social welfare system. To do so, activists will target decision makers in national and local government, as well as relevant public institutions and service providers such as Centres for Social Welfare. Bringing these stakeholders into concrete conversations about improving social welfare provision in Serbia will help form lasting partnerships between these active citizens and their government representatives. Achieving this change in social welfare policy will substantially improve the lifestyle options of hundreds of disabled people in future years.

The advocacy component of this project will achieve other aims as well. In pursuit of this policy change, CIL and CRS will support a core group of 20 disability NGOs through training and mentoring in advocacy techniques. Equally importantly, CIL and CRS will support these 20 groups as they reach out to other civil society actors, such as human rights organizations, women’s groups, local and national media and the PRSP Network of 20 local NGOs and representatives of local self-governance. Activities of the PRSP Network, of which CIL is a member, are facilitated by CRS. This core group of local actors aims to raise mobilize other civil society organizations and citizens to take an active part in design, implementation and monitoring of PRSP for Serbia.

As disabled people are a high percentage of Serbian citizens entrenched in poverty, CIL and CRS will facilitate linkages between these DPO’s and the groups already solidly working on policy recommendations to fight poverty. Such cross-sectoral partnerships are new to Serbia, where community based organizations often are unaware of each other at best, or deeply sceptical of each other at worst. However, these new partnerships could create important opportunities for future coalition efforts on issues of mutual interest, such as improving the legislative environment for all NGOs.

Given Serbian government’s attempts to move forward on decentralization, it is expected that lobbying and advocacy efforts will need to focus more on local governments who will ultimately bear the cost of expectations and co-funding of PAS. In order to be successful in this effort, CIL advocacy will combine inter-group and mass advocacy approaches.

This will require a fair amount of learning through training but also learning in practice given that currently accessible local knowledge has not been acquired through people centred and community-based initiatives but rather though ideological advocacy, focussing on enemies, not allies.

It is planned that project targets will have five discreet groups of direct beneficiaries:

• 70 disabled persons through provision of PAS, training, independent living skills development and advocacy
• 70 personal assistants through job creation, training and advocacy
• A core group of at least 70 leaders and activists from at least 20 disabled people’s organisations
• A 1,000 citizen-strong civic coalition advocating for social inclusion of disabled people
• Serbian Ministry of Social Affairs as the recipient of a tested model of personal assistance service provision and a comprehensive PAR study

FEASIBILITY STUDY

Currently another initiative is taking place in Serbiaas well, started by the Ministry for Social Affairs, to perfom the feasibility studies on needs for the assistance of another person in general disability population, and possible ways to meet those needs. This study is aimed to offer possible recommendation for the new legislation in Social welfare which is due to be bring by June 2003. At the moment, in Serbian legislation, there is a benefit called “financial support for the involvement of another person’s help”, and most of the disabled people who are categorized to have 70% and more percentige of impairment, are intaitled to this benefit. However the amount is the same for all beneficiaries, and is 3.600,00 YU dinars per month (60 €) regardless of their particular needs, and people who are regard as social cases (without regular income) are receiving 1.500,00 YU dinar (25 €) per month. Of course both of these amount are too small to be used to pay assistance. The idea of the study is to researh on particular sample, different needs for the assistance, and ways to meet them, such as institutional care (which is now in decline), day centers, small cash benefits, and hopefully direct payment, i.e. PA service. The study would also has current legislation analysis on this issue, and recommendation for legislation changes. CIL has been invited to be a partner in this study, and to contribute with its expertize and experience.

INSTEAD OF CONCLUSION

The real opportunities of achieving independent living for disabled people in Yugoslavia and Serbia, at the moment does not exist in neither in the mainstream system of social welfare, nor as the alternative option for certain nuumber of users. Almost identical situation is in the other countries of Former Yugoslavia (i.e. Bosnia, Macedonia). Situation is little bit better in Slovenia which has certain system set up, while in Croatia, at the moment the civilian military service is used as an opportunity to involve some people as PA, but only at the organizational level, not individual. However, the hope of CIL is that pilot project on PA Service, Fisability Study on needs for the assistance, and good and permanent advocacy work, would open up conditions for independent living in Serbia. The risks to that proces would of course be, political situation, new escalation of violence in the region, and fail of poverty reduction strategy.

NOTE: The launch of the project Personal Assistance Service in Serbia, planned for the 14th of March, has been post poned, due to the killing of Prime Minister of Serbia, Mr. Djindjic, and state of emergency proclaimed in Serbia, after the atack to Prime Minister. It is expected that the official launch could take place at the end of May 2002, while preparatory activities of the project will run, as planned