The number of the autism diagnosis is increasing rapidly all over the word. A recent EU study (supported by EU grant – ASDEU project) showed that in 18 EU member countries (among them in the partner countries) the prevalence rate is close to 1%. Lately there are many therapies and interventions, targeting the persons with autism, and more and more trainings are available for the professionals working with autistic children and adults. Still, there is an underserved target group: parents with autistic children (or even adult family member). They have very little support. They feel left behind and left alone with their problem. Parents need information on autism itself. As autism as a disability is quite young, too many misleading information is available. Families need professional guidance to find the right interventions. Besides, autism is also new among the disabilities, the UNCRPD has just recognised it recently. There is still a long way to go to promote the right of persons with autism and neurodevelopmental disorder (NDD). Parents have to learn their rights, and also have to develop advocacy skills to be able to stand up for their children’s rights. The countries involved in this project (Hungary, Romania, Poland and Serbia) have similar social and educational background. The project partners are already all supporting families with autistic (and NDD) children. The goal of the project is to exchange good practices and collect the methods about: • how to build a network • how to keep it alive • channels to communicate • content that is injected into the network • info, that is collected from the network • research – parent expectation about support The plan is to organize meetings for parents and NGOs from various countries, to share their needs as well as their solutions for a better quality of life for the families. During these two years, we hope to learn from each other in the aim of providing better care for parents with disabled children. At the end of the second year, every partner will implement a new channel or method of support that will increase the quality of their support. Tangible outcome: Collection of good family practices (how to promote rights, how to keep the life on a "normal" track with a special child) Collection of methods of networking (channels, structures) Examples of organised familiy support best practices from every country Guide: How to build a parent network and how to keep it alive
According to a recent (2013-2018) EU project (ASDEU) that conducted study in 18 European countries, the prevalence rate of autism is 1%, meaning 1 in every 100 person is autistic. In Hungary, the National Association conducted a research. The outcome showed similar prevalence rate, and also increasing numbers of the diagnosis. After the diagnosis the families with autistic children remain alone. Nor the health neither the social support system has any solution how to give appropriate help for the families after the autism diagnosis. As the society does not understand the autism condition, they became easily excluded from the society. All the partners who participated in the project have experience in supporting families with disabled family member on different level. All these experiences are showing the demanding need of support. This is leading to the conclusion that families with disabled member need support, they need to belong somewhere. In the PROPAR project, organisations from Hungary (Mars Foundation), Poland (JiM Foundation), Romania (KEY Association) and Serbia (Autizam Srbija) have worked together to exchange good practices in supporting families with disabled family member on different level. We have worked together for 2 years in order to learn from each other, find new ideas, practices and new impulses and implement new ways of support in every partner country. During our Online Closing Event, we have summarized our experience and shared with you all, hoping that you will benefit from our findings too. https://youtu.be/bxX091C0E0Q