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part iii achieving the change - Disability Monitor Initiative

part iii achieving the change - Disability Monitor Initiative

Beyond

Beyond De-institutionalisation: The Unsteady Transition towards an Enabling System in South East EuropeACHIEVING THE CHANGE: KEY STEPS AND SHARED RESPONSIBILITIESBOX 24Lack of public information on governmental activities on disability issues in BulgariaOne of the largest problems of disability policy reform is the lack of comprehensive information availableto the community in regard to governmental activities on disability issues. In a survey conducted inBulgaria on state policy, the majority of people with disabilities said they were not aware of governmentactivity related to disability such as programmes and funds to assist people with disabilities, employmentinclusion incentives or financial assistance policies. Despite this lack of knowledge, the survey showedthat the majority of people with disabilities expect changes in the system to come mainly from the staterather than DPOs.Source: Centre for Independent Living Disability - A Deficit or a Means for Survival: Disability Rights inBulgaria, (Sofia: Centre for Independent Living, 2003).Initiatives for changeAs stated previously, DPOs and NGOs in the regionare the major instigators for data and informationcollection on the situation for people with disabilities.The Centre for Independent Living (CIL) in Sofiaproduces a yearly survey on disability rights legislationin Bulgaria in collaboration with research institutesand various local NGOs. Along with reporting ondisability rights in Bulgaria, the report makes anassessment of the situation of people with disabilitiesand evaluates how informed they are about theirrights. The aim of the survey is to make an analysisof Bulgarian disability legislation in the framework ofthe UN Standard Rules. CIL Sofia recently publishedtheir third report on disability rights and the situationin Bulgaria in a report called, "Equal Opportunitiesthrough Access to Social Services". It makes aqualitative analysis of social services available topeople with disabilities by asking users themselveshow they view the services available to them as well asresidential institutions, government policies and NGOactivities towards disability issues. Finally, the reportmakes an economic analysis of the effectiveness ofstate resources on disability expenditures 80 .The Centre for Independent Living Serbia made areport on the "Specificity of Poverty among Personswith Disabilities" in collaboration with Oxfam, Belgrade(Box 25).The survey on the situation of people with disabilities inthe UN administered province of Kosovo conducted byHandicap International along with Gravir and HandiKos,a DPO in the UN administered province of Kosovo,illustrates how research can provide information onthe environment of people with disabilities. Using theDisability Creation Process classification, it identifiedthe main facilitators and obstacles encountered bythe interviewees 81 . Spotlight number 9 explains thedynamic of this information initiative.Looking aheadPriorities for improving the field of information andcommunication regarding disability for the regioninclude:• Comprehensive surveys should be conductedon the situation of persons with disabilities, ontheir needs and expectations, based on holisticmodels such as the ICF or the DCP,• Databases should exist to collect information onthe individual needs of people with disabilities.These databases should be mainstreamed intoexisting public services databases such asCentres for Social Work, education, and theEmployment Bureau. This will help to identify iftheir services can reach people with disabilities,• Improve the access to information for peoplewith disabilities on their rights and availableservices. This will also provide them with thetools to monitor the change process.The state is also responsible for informing citizens ondisability and care system policy reforms. Disabilityresearch programmes need to be funded by the state inorder to understand the needs, obstacles and situationof people with disabilities. People with disabilitiesthemselves should be involved in the collection,design and dissemination of this information withthe participation and involvement of all stakeholders.Finally, and most critically, this information will providethe knowledge needed to communicate about disabilityaccording to the new disability paradigm.2.3 Training of professionals workingin services that concern persons withdisabilitiesThe sustainability of community-based servicesdeveloped in South East Europe over the last decadeis tenuous in part due to the lack adequate trainingof professionals on the new disability paradigm. Thiscan be done only through promoting a change inprofessional practices for all professionals workingspecifically with people with disabilities or those who80 Centre for Independent Living, "Disability - A Deficit or a Means for Survival: Equal Opportunities through Access toSocial Services" (Sofia: Centre for Independent Living, 2003).81 E. Bouffioulx, P. Castelein, G. Heris, M. Lemort, R. de Riedmatten: "Analysis report of the situation of people withdisabilities in Kosovo” (GRAVIR, Handicap International, HandiKos, September 2002).106

Beyond De-institutionalisation: The Unsteady Transition towards an Enabling System in South East EuropeACHIEVING THE CHANGE: KEY STEPS AND SHARED RESPONSIBILITIESBOX 25Report on the "Specificity of Poverty among Persons with Disabilities" carried out byCentre for Independent Living Serbia and OxfamThis project originated from CIL Serbia's involvement in monitoring the PRSP process in Serbia findingthe need to address the issue of poverty and disability. The project was led and funded by Oxfam,Belgrade office. The research was carried out in three municipalities and included 180 people withdisabilities of various types.The main findings of this report show that:• People with disabilities are one of the poorest groups among the poor citizens,• The percentage of the poor among the people with disabilities is three times higher than among theother inhabitants.The basic causes of poverty for people with disabilities as well as for the overall populationare:• Insufficient education,• Impossibility of work engagement, particularly conditioned and strengthened by the specific causesof poverty for the disability population:- Additional expenses of disability,- Social exclusion,- Inexistence of necessary and adequate support systems.If the "poverty line" is established as in the 2002 SLSP (Survey on the Living Standard of the Population)at 4,489 dinars per household member* then the income of 61,2% families of persons with disabilitiesis below the poverty line:• 34% have an income ranging from 2,500 to 4,500 dinars per household member,• 27.2% have an income below 2,500 dinars per household member.The report makes a detailed analysis of the additional costs of disability and social exclusion of peoplewith disabilities including very low accessibility to social services and affordability of services thatfacilitate independent living such as personal assistance. Poverty is measured not only in incomeand economic dimensions but also in all of its aspects such as the dimension of accessibilityof public utilities and services and the level of participation, and social exclusion.* Bogicevic, B., Krstic,G., Mijatovic,B., Milanovic, B. POVERTY AND REFORM OF FINANCIAL SUPPORT TO THEPOOR, Ministry for Social Affairs and The Centre for Liberal-Democratic Studies, Belgrade, 2003, page 19.are providing services that may concern persons withdisabilities.According to the holistic approach described in theUN Standard Rules, the main objectives for trainingprofessionals are:• Professionals working in the disability field needto be trained on interdisciplinary teamwork, and onindividualised and holistic rehabilitation tools,• Professionals working with people with disabilitiesincluding educators, educational administratorsand social workers need to be informed of thenew disability paradigm and the principles of fullparticipation,• Mainstreaming disability into all ordinary services,• People with disabilities should be included intraining programmes and the development of newcurriculum for public service training.Under the institutionalised care systems inSouth East Europe, disability was considered asan individual pathology, to be cured by specialistssuch as defectologists and physiatrists (physiciansspecialised in physical medicine and rehabilitation).The training of rehabilitation professionals was andstill is overspecialised and fragmented in terms ofservice delivery 82 . Even though the technical levelof rehabilitation professionals trained in the formerYugoslavia and in Bulgaria was acknowledged asgood, it was essentially based on medical diagnosesand the functional status of the person, with littleattention paid to environmental factors and individualexpectations. There has been little evolution on theseaspects since then, partly due to a lack of opportunitiesfor professional upskilling.Most of the professionals working outside this specialiseddisability field do not receive any information ondisability during their studies, and thus are reluctantto work with this category of clients, considering themas too fragile. For others like health professionals thisinformation remains limited, and is still stamped witha very medical approach to disability. This is also thecase within training programmes for social workers incountries from the former Yugoslavia which was theonly country in Central and Eastern Europe to maintain82 Pascal Granier, “Physical Rehabilitation Services in South East Europe”, Disability Monitor Initiative, (Belgrade: HandicapInternational, 2004).107

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