Transition to life in the community– from seeds to flowers
EASPD's Spring Knowledge Café took place on 13th April and focused on the transition from institutions to independent living (IL) for Persons with Disabilities. Throughout the event, Pep Solé from Support Girona served as moderator, guiding the discussions of speakers László Bercse (Self Advocate and vice-president of Inclusion Europe), Natalia Cojocaru, from Keystone Moldova, Cerasela Nicoleta Predescu from Pro Act Support in Romania, and Milan Šveřepa from Inclusion Europe. The main objective of the event was to underline the right of living independently for everyone and to highlight initiatives and challenges that persons with disabilities may face in their transition to independent living. As it was stated at the beginning of the conversation, IL is not only about making society accessible, but also about providing the support required for every person and to make the society aware of the right to live independent.
The event started with a speech from Mr Bercse on the transition to independent living. He began his speech with a visual description of what IL means to him. He proposed to the participants to imagine a group of persons in the garden of an institution watching people playing football in the next garden. As those people playing, persons with disabilities also want to live, make friends, make decisions, learn, and control their own lives. Persons with disabilities want to be included and be part of the community. Living independently makes persons with disabilities an integral part of society, rather than segregating them in institutions. However, to live independently, persons with disabilities need support. In this regard, Mr Bercse continued his speech with suggestions needed to be implemented by public authorities when improving the quality of services to live independently. These are:
- Providing personal budget to persons with disabilities living independently.
- The right of being users of the best services and the most adapted to their support needs.
- The right to choose independently the services needed.
- The inclusion of persons with disabilities in planning and monitoring of services.
- The support for communities to include people with disabilities.
- More trainings for staff that support people with disabilities.
Finally, Mr Bercse believes that this support from states or service providers to live independently is impossible if there are no common guidelines from the European Union to Member States on how to further the deinstitutionalisation (DI) efforts. This will also help the development of emergency plans to address future potential crises, the need for which has been demonstrated by the COVID-19 pandemic.
The conversation continued with Ms Cojocaru, who explained the technical assistance that her organisation, Keystone Moldova, provides to service providers and persons with disabilities to achieve the legal framework needed for the rights of persons with disabilities to live independently.
This perspective focuses on different areas, such as DI, where they provide social assistance or psychological counselling to persons with disabilities; labour inclusion and economic empowerment when providing vocational training or support in job identification; advocacy and self-advocacy; complain, where they offer a hot line service and persons with disabilities or any other person can call and state how their rights have been violated or ask information about community services, among others. Other area of technical support are capacity building, through training, mentoring, or coaching, and raising awareness. Ms Cojocaru stressed the importance of raising awareness of the right of persons with disabilities to live independently among the society and family, in order to empower persons with disabilities in the process of DI. This tool is put in practice through sharing personal experiences of persons with disabilities that live independent, showing that IL is possible.
The third speaker, Ms Cerasela Nicoleta Predescu, from Pro Act Support, shared the current national legal framework for IL in Romania. She explained that thanks to the international community and the EU pressure, the Romanian government has put their attention on institutions. However, this attention results in closing big scale institutions and developping protected living, which in essence, is small scale of residential care. In this context, ProAct Support runs 12 community services that provides to 54 people the opportunity to live independently. Nevertheless, her organisation finds it difficult to achieve the balance as social service. This is because, on the one hand, ProAct is a social service who offers support with houses for persons with disabilities to live independent, but on the other hand, they do not offer any further service as people are living independently. Given this situation, Ms Predescu stated that the Romanian system is made to live in an institution.
Currently, the Romania situation is that there are initiatives and willingness from governments and public authorities to help persons with disabilities to live in the community, however there is a lack of role models or good practices to focus on, since Romania has no experience in this transition.
The final speaker, Milan Šveřepa from Inclusion Europe, underlined two essential points in the transition to independent living. The first one is that all members of a community have the opportunity, and often the duty, to adopt various roles. These can be as parent, sibling, neighbour, worker, community leader, etc. Unfortunately, persons with disabilities residing in institutions are denied these roles, and instead confined to that of persons receiving services, separated from the rest of the community. These roles, however, are essential for the wellbeing of a person. Therefore, services should adopt as a key mission to support persons with disabilities in their integration in the community, including with regard to adopting key roles within social groups.The second point is the language and the framework given to IL. Independent living is not synonym with living isolated or alone, it means that the person is independent to make decisions. IL is not about household skills that can be taught, but about having social relations and develop a social role in the community. In conclusion, the main focus of IL should be on building social relationships and developing social interaction so persons with disabilities can function in the society as everybody does.
After the presentation of the speakers, there was time for a Q&A session, when the floor was open to the participants. During this moment, several points were contributed to the conversation:
- The importance to have collaboration and policy integration between policy makers when developing DI process and policies.
- The significance of making the society aware of the right of persons with disabilities to live independently. This is not only to facilitate the inclusion of persons with disabilities in society but also to have the support on DI policies, since IL costs less than institutions. While a person can receive around 400€ for living independent, a person living in an institution needs a budget of 1200€.
- The decreasing frequency of support to IL along the time. In the beginning persons with disabilities may require constant support, but after they have developed the skills required, the support needed is less or inexistent.
As a closing remark to the event, Mr Pep Solé stated that every person matters, and every single person must have individualised support based on their needs. When self-advocating, people do not want to be a hero, but they just want to live, as everyone else. Support is essential on persons with disabilities to develop social relationships and help them to overcome personal barriers independently.
Finally, along the event some resources related to IL were shared:
- DI Greece: Technical Support on deinstitutionalisation (DI) process in Greece
- UNIC project
- Collection of Models of Good Practice in deinstitutionalisation for people with high support needs/multiple disabilities, including practices on how assistive technology can support inclusive living
- Innovative Frameworks for measuring the Quality of services for Persons with Disabilities
You can find more information about EASPD’s work on independent living on our website.