Establishment and sustainability of the deinstitutionalization process and development of community-based services for people with intellectual and mental disabilities in Serbia

Abstract

The second half of the 20th century has brought novelty in understanding of disability. Religious or moral model, that marked the beginning of peoples’ perceptions and attitudes towards disability, as well as the medical model that has prevailed for few centuries, were subjected to review because of changes in reflecting and understanding of disability. Alternative models, such as the social or bio-psycho-social and human rights based model have marked a change of paradigm, policies and legislation in the field of disability around the world, as well as increased acceptance of persons with disabilities as members of diverse societies. These models of disability were followed by different perception and changes in the approach to people with disabilities by professionals, their families, local communities and society as a whole. Therefore, the large residential institutions, in the form of asylum, served for treatment of these people begun to be replaced by community-based services starting from the 1960s of the last century with the emergence of numerous movements for rights of people with disabilities, the development of the normalization principles, criticism of institutions and its dehumanizing effects, as well as the public scandals that were related to the treatment of the beneficiaries and living conditions. Expressed commitment to non-institutional care for people with disabilities in different countries was operationalised in practice at a different pace and with varying degrees of success. In some countries, this process took place relatively quickly and without major difficulties, while the system has remained still largely institutionalized in many countries. The commencement of the deinstitutionalization process in Serbia dates from the beginning of the 2000. This process was defined as a part of the social protection system reform. The system, which was characterized as predominantly institutionalized, was the subject of change efforts in the direction of greater decentralization, activization and deinstitutionalization of beneficiaries, in accordance with international standards, which are simultaneously part of the necessary requirements in the European integration process. Therefore, the subject of this thesis, operationalized through theoretical and empirical part, is the analysis of the current situation in the field of social protection of people with intellectual and mental disabilities, as well as factors that contribute to or inhibit the implementation of deinstitutionalization process in Serbia. The focus of the theoretical part is on normative and organizational assumptions of this process with the aim of assessing its hitherto achievements and results. This part is based on the analysis and critical review of the normative acts (laws and by-laws, regulations, strategies), the international law acts (declarations, EU conventions), reports of local and international agencies and organizations, governmental authorities and bodies on the human rights of persons with intellectual and mental disabilities. The empirical part emphases the supported living for people with intellectual and mental disabilities as supporting service for independent living in a community, which is at the same time one of the key services in the deinstitutionalization process. The subject of this research are differences in the quality of life for users of residential accommodation, supported living provided by the social protection institutions and users of the same service but provided by the non-governmental sector, based on the Quality of Life Questionnaire (QOL.Q). The empirical part includes examination of the attitudes of the employees in social protection institutions that work directly with beneficiaries toward the possibilities of deinstitutionalization of these persons. At the same time, this research allows to indirectly determine the predominant model of disability presented in the attitudes of professionals, as well as the potential extent of expressed paternalism and prejudice. For the purposes of the research, questionnaire that examines the attitudes of professionals towards beneficiaries they work directly was constructed related to level of support assessment and participation of the beneficiaries, as well as the deinstitutionalization process in Serbia. The results indicate that there was made a significant shift in the direction of the alignment of national legislation with international standards in the field of protection of people with intellectual and mental disabilities, but the next step which would lead to their further operationalization and implementation in practice is missing due to lack of control mechanisms, many by-laws or their non-compliance with the standards what have a direct impact on the quality of life of these people. Research shows that there are significant differences in every quality of life domain among all the sampled groups of users in relation to the services they use and the service provider. The quality of life of people with intellectual and mental disabilities who live in supported living provided by social welfare institutions is higher in all areas of assessment compared with institutionalized users, but also lower in relation to the quality of life of users of the same services provided by non-governmental organization. These results suggest that physical proximity to institution contributes to less empowerment, independence, productivity and inclusion in the life of the community, and respectively to their considerable reliance on the institution after deinstitutionalization. The quality of life of beneficiaries is also affected by the attitudes of employees in the social protection institutions characterized by paternalism, expressed prejudices, inadequate assessment of beneficiaries and still partially maintained the medical model. Additional problems are systemic inconsistencies and lack of regulatory procedures as well as cross-sectoral cooperation and services. All these reasons together contribute to transinstitutionalization and the creation of services that could better be described in terms of the halfway houses between institutional and non-institutional care rather than community-based services due to which the social protection system of people with intellectual and mental disabilities is being very difficult and slow reformed while the position of these persons remains very unfavorable.

Druga polovina dvadesetog veka je donela novine u razumevanju invaliditeta. Religijski, odnosno moralni model koji je obeležio početak percepcije i odnosa ljudi prema invaliditetu, kao i medicinski model koji je bio vekovima dominantan, bili su predmet preispitivanja usled promena u promišljanju i shvatanju invalidnosti. Alternativni modeli, poput socijalnog, odnosno bio-psiho-socijalnog i modela zasnovanog na ljudskim pravima su označili promenu paradigme, politika i zakonodavstva širom sveta u oblasti invalidnosti, kao i povećano prihvatanje osoba sa invaliditetom kao članova društava različitosti. Ovi modeli invalidnosti su bili praćeni različitom percepcijom i promenama pristupa osobama sa invaliditetom od strane profesionalaca, porodice, lokalnih zajednica i društva u celini. Stoga su velike rezidencijalne institucije koje su u formi azila služile za zbrinjavanje ovih osoba, počele da bivaju menjane uslugama u zajednici počevši od 1960-ih godina prošlog veka sa pojavom brojnih pokreta za zaštitu prava osoba sa invaliditetom, razvojem principa normalizacije, kritikom institucija i njenih dehumanizujućih efekata, kao i javnih skandala u ustanovama u vezi sa tretmanom i uslovima života korisnika. Iskazano opredeljenje ka vaninstitucionalnoj zaštiti osoba sa invaliditetom se u različitim zemljama operacionalizovalo u praksi različitom dinamikom i sa različitim uspehom. U nekim zemljama se ovaj proces odvijao brže i bez većih teškoća, dok je u mnogim zemljama sistem zaštite i dalje u velikoj meri institucionalizovan. Začeci procesa deinstitucionalizacije u Srbiji datiraju od početka 2000-ih godina i definisani su kao deo procesa reforme sistema socijalne zaštite. Sistem koji je bio okarakterisan kao pretežno institucionalizovani, bio je predmet nastojanja da se promeni u pravcu veće decentralizacije, aktivizacije i deinstitucionalizacije korisnika, a u skladu sa međunarodnim standardima koji su istovremeno deo neophodnih zahteva u procesu evropskih integracija. Stoga je predmet ovog rada, operacionalizovan kroz teorijski i empirijski deo, analiza trenutnog stanja u oblasti socijalne zaštite osoba sa intelektualnim i mentalnim teškoća, kao i faktora koji doprinose, odnosno inhibiraju sprovođenje procesa deinstitucionalizacije u Srbiji. Fokus teorijskog dela rada je na normativnim i organizacionim pretpostavkama ovog procesa sa ciljem ispitivanja njegovih dometa i dosadašnjih rezultata. Ovaj deo je zasnovan na analizi i kritičkom osvrtu na normativne akte (zakone i podzakonske akte, uredbe, strategije), akte međunarodnog prava (deklaracije, konvencije EU), izveštaja domaćih i međunarodnih agencija i organizacija, vladinih organa i tela o stanju ljudskih prava osoba sa intelektualnim i mentalnim invaliditetom. U empirijskom delu je naglasak na usluzi stanovanje uz podršku za osobe sa intelektualnim i mentalnim teškoćama kao usluzi podrške za samostalan život u zajednici koja je istovremeno jedna od ključnih za proces deinstitucionalizacije. Predmet istraživanja su razlike u kvalitetu života korisnika domskog smeštaja, usluge stanovanje uz podršku koju pružaju ustanove socijalne zaštite i iste usluge koju obezbeđuje nevladin sektor na osnovu upitnika za merenje kvaliteta života Quality of Life Questionnaire (QOL.Q). Empirijski deo obuhvata i ispitivanje stavova zaposlenih u ustanovama socijalne zaštite, koji rade direktno sa korisnicima, prema mogućnostima deinstitucionalizacije ovih osoba. Cilj ovog dela istraživanja je istovremeno posredno utvrđivanje koji od modela invalidnosti je pretežno zastupljen u stavovima profesionalaca, kao i u kojoj meri je izražen njihov paternalizam i predrasude. Za potrebe ovog istraživanja konstruisan je upitnik koji ispituje stavove profesionalaca prema korisnicima sa kojima neposredno rade, procenom stepena podrške i participacije, kao i procesu deinstitucionalizacije u Srbiji. Dobijeni rezultati ukazuju da je izvršen značajan pomak u usklađivanju nacionalnog zakonodavstva sa međunarodnim standardima u oblasti zaštite osoba sa intelektualnim i mentalnim teškoćama, ali je izostao sledeći korak koji bi doveo do njihove dalje operacionalizacije i implementacije u praksi usled izostanka kontrolnih mehanizama, mnogih podzakonskih akata ili njihove neusklađenosti sa standardima što ima direktne posledice na kvalitet života ovih osoba. Istraživanje pokazuje da postoje značajne razlike u svim domenima kvaliteta života između svih grupa korisnika u odnosu na uslugu koju koriste i pružaoca usluge. Kvalitet života osoba sa intelektualnim i mentalnim teškoćama koje koriste uslugu stanovanja uz podršku koju pružaju ustanove socijalne zaštite veći je u svim domenima procene u poređenju sa institucionalizovanim korisnicima, ali istovremeno manji u odnosu na kvalitet života korisnika iste usluge koju obezbeđuje nevladina organizacija. Ovi rezultati ukazuju da fizička blizina ustanove doprinosi manjoj osnaženosti, samostalnosti, produktivnosti i uključivanju korisnika u život zajednice, odnosno njihovoj značajnoj upućenosti na ustanovu i nakon deinstitucionalizacije. Na kvalitet života korisnika utiču i stavovi zaposlenih u ustanova socijalne zaštite koje odlikuje paternalizam, izražene predrasude, neadekvatna procena korisnika i delimično održavanje medicinskog modela. Dodatni problem predstavljaju sistemske nedorečenosti i nedostatak regulatornih procedura, kao i međusektorske saradnje i usluga. Svi ovi razlozi zajedno doprinose transinstitucionalizaciji i stvaranju usluga koje se više mogu opisati u terminima kuća na pola puta odnosno usluga između institucionalne i vaninstitucionalne zaštite umesto usluga u zajednici usled čega se sistem socijalne zaštite osoba sa intelektualnim i mentalnim teškoćama veoma teško i sporo reformiše, a položaj ovih osoba i dalje ostaje veoma nepovoljan.