On November 8, Centre LIVING UPRIGHT (CLU) brought almost all the people who contributed to the personal assistance service in Novi Sad together in order to discuss its outcomes.

Unfortunately, personal assistance in Novi Sad is still a project-based service, funded through the lottery funds, with the amount which cannot be predicted until the end of the two calls for proposals, mostly by the City Department for Social and Child Protection, each year. The other possibility, defined by the Law on Social Protection is public procurement, which is more transparent and funded directly from the city/municipal budget. However, in most cases, the lowest price is the only reason a licensed provider is selected. The users are not the ones who choose the way the service is provided.

Since being recognised as a pilot project organised by a DPO, the service was funded for 1-5 users using the assistance 40 hours a week. After starting the campaign 0.1%, asking for this percentage of the City annual budget to be allocated for this purpose, and organising various donor events to inform citizens about the importance of this service as a potential right of each person, the City of Novi Sad is becoming aware of its importance and price. This year, the amount of 75,000 EUR was approved – 28,000 EUR until May, the rest in August 2018. Starting from October, 14 of us have been using the service from 8 to 24 hours a day. This is 10 more people than in the last 5 years, 40% of the people who need assistance as far as we know, and at least 2,8% of those who would be entitled to it if Article 19 of UN CRPD was fully implemented; having in mind that in Serbia, only physically disabled and blind persons have a right to use PA services. Those younger than 18 have a right to a service called ‘attendance to a child and a pupil’, which implies physical assistance and assistance in decision making. As part of this service, which is mostly used in the school system, ‘attendants’ actually replace teachers in working with disabled children and youngsters, and rarely act as interpreters between the two worlds in the same classroom/group. The connection or continuity between these two services exists only in several municipalities where DPOs are licensed for organising child’s assistance, but in most of them, there is no personal assistance for adults at all.

This is quite a challenge both for the state, from the strategic point of view, and for the movement, since children and young people are the objects of various interest groups. These groups, mostly consisting of parents and experts, or charity-based structures, such as Caritas, believe that they are in a win-win situation, considering the general socio-economic situation in the country.

What is the role of disability and independent movement? Luckily, it has the mainstream knowledge and information, but in most cases, lacks will or (human) resources to make a real change, or to make a difference in society, both as a community and each of us individually. The greatest or no expectations are present, instead of any readiness to do anything for ourselves that will make a difference in our lives. Even when we get to that point of taking action, there is a tendency towards the ‘minimalisation’ of conditions – the tendency of agreeing on a minimum – which leads us to the absurd situation of unfulfilled needs, secondary impairments and the additional limitation to each of us. This disregards the fact that the disability movement, as part of the civil rights movement, offers answers to the whole society for the full implementation of the right to choose. This includes assistance for those who need it, accessibility as more secure and comfortable for everybody, and peer support that reminds us that each personal experience matters, with or without expert knowledge, if we’d like this planet to have a future with all of us as different as we are.

So, working in challenging circumstances, surrounded by different types of discontinuity, with short-term and ad hoc partnerships/coalitions that had an impact on the whole community, CLU has been working on creating preconditions for Independent Living for 15 years in partnership with the CIL Serbia, independent journalists, students, LGBT organizations and other CSOs, using education, publishing and media as its main tools.

Next year, we are expecting changes in legislation, which could improve the position of the community services not founded by the state. We are going to work until all 3,000 of Novi Sad residents, now using direct payments to be cared for by others, can use the assistance, technology or aids we need to live independently and have the main tools to build an accessible city.

Serbian version of the article is available here [Prevod na Srpski]

                                                                                      Milica Mima Ružičić-Novković, 27 Nov. 2018.