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Description
In Poland there is no comprehensive health care system addressed to families with children with disabilities. Parents of children hospitalised in neonatal intensive care units do not receive reliable information nor appropriate support. This experience causes them stress comparable to traumatic stress. They often feel despair, guilt or injustice, and even struggle with depression. There is a lack of multi-specialist centres where the child is in the centre of attention, and where professionals work closely together and consult with each other to determine the scope of treatment. In addition, activities aimed at the child with disabilities usually overlook the aspect of functioning of healthy family members. Therefore, families with children with disabilities very often break up (statistically 8 out of 10 marriages break up after the birth of a child with disability). In this project we want to create and test solutions that will improve the support system for families with children with disabilities in the Wielkopolska Region. We will design a web application, launch a specialized forum and create a network of 10 PRO-BABY – Early Childhood Support Information and Consultation Points. We will conduct an evaluation and elaborate a report on the possibility of disseminating the developed solutions throughout Poland. In creating the network of Pro-Baby Points, we cooperate with such organisations and institutions as: the Department of Neonatal Infections of Poznan University of Medical Sciences, the Rysy Foundation, the Association for Children and Adults with Cerebral Palsy "Żurawinka", the Club of Enterprising Women and the Little Pony Clinic in Suchy Las. Our foreign partners include Centre for Applied Social Sciences (CASS) University of Tartu (Estonia), Gerðaskóli, Suðurnesjabær (Iceland) and the Women''s Issues Centre (Lithuania).
Summary of project results
Main problems and challenges answered by the project:
1. Lack of comprehensive, systemic care and support for a disabled child and his or her family
2. Lack of reliable information (e.g. necessary documents, diagnosis and therapy options) collected in one place, easily accessible to parents
3. Lack of easily accessible, clear treatment algorithms (diagnostic and therapeutic) that would be individually adapted depending on the diagnosis and condition of the child.
4. Exclusion of families of children with disabilities from social life.
5. Feeling of loneliness and misunderstanding when caring for a child with a disability
6. Lack of support from healthy family members, e.g. healthy siblings The problem is complex: children need therapy, parents and siblings need support, society needs information about the problems and needs of children with disabilities, related disorders and the functioning of Persons with disabilities (OzN).
1. Organization and equipment of points -Creation of points in key locations of the Poznań Agglomeration, including smaller towns. -Equipping points with promotional and substantive materials. 2. Specialist support -workshops, training for parents, individual consultations and lectures. -Launching a helpline for parents in crisis. 3. Training - for 20 representatives of points in the field of communication with families, institutional and therapeutic support. 4. Integration of local communities -Organization of integration events: football tournaments, family festivals and concerts. -Meetings and consultations at points - exchange of experiences and integration of local communities and families of children with disabilities. 5. Technological innovations - Application for parents, including specialist databases, diagnostic algorithms, patient calendar 6. Information campaign -Active promotion of the project in social media and during conferences. -Dissemination of the final report with recommendations for public institutions. 7. International cooperation -Exchange of experiences with partners from Estonia, Finland and Iceland, organization of educational trips and participation in international aid events. Products developed: -Guide for parents: Compendium of knowledge available in points. -PRO-BABY application: A tool supporting parents in organizing care for children with disabilities. -Training program for students, volunteers and specialists. -Final report with recommendations: Conclusions and proposals for system changes sent to key institutions and organizations. Effects: -Building an effective support network for families in the Poznań agglomeration. -Strengthening the social integration of local communities with families of children with disabilities. -Facilitating access to information and support for families. -Starting activities to implement similar points in other regions of Poland
1. Strengthening support for families of children with disabilities (DzN): helping them understand and accept their child''s disability, providing information and tools needed to better meet the child''s needs and provide effective family support. 2. Increasing the availability of medical, therapeutic and information services: thanks to the focus within the project activities on developing a network of local information, therapeutic and educational support that is important for DzN and their families. Accessibility was increased through training, workshops, consultations for families, information and integration meetings, creation of a network of information points, and preparation and provision of information materials in the form of guides, e-books, etc. 3. Improving the quality of life of children with disabilities through social integration: The project promoted the integration of children with disabilities with peers, both in the school and social environment. Activities included the organization of workshops, sports and artistic activities, and participation in various social events, picnics, festivals, etc. 4. Support for parents in acquiring skills necessary to care for children with children: The project offered parents training and workshops that would help them acquire skills necessary for everyday care of children, including alternative communication techniques, medical and therapeutic care, pre-medical first aid as well as an open approach for the child''s education. 5. Improving social awareness about children''s disabilities: The project influenced the change in social attitude and awareness about children''s disabilities through information campaigns, seminars, educational activities, and integration meetings. 6. Reducing the stigmatization and discrimination of people with disabilities and promoting equal access to education, work and other aspects of social life.
Summary of bilateral results
Cooperation with a partner from Iceland significantly enriched the project, contributing unique perspectives and solutions based on Icelandic experiences. Iceland, known for its advanced approach to social policy and systemic support for families, was an inspiration for us in many areas: 1. Understanding the needs of families of children with disabilities The partner from Iceland presented detailed mechanisms for supporting families of children with disabilities, based on an individual approach to each case. We learned how to effectively organize psychological, educational and financial support, which will help us better adapt our activities to the needs of families in Poland. 2. Inter-sectoral integration Thanks to the partner from Iceland, we learned about solutions that facilitate the integration of the medical, educational and social sectors, which allow us to create comprehensive support programs. The Icelandic model of cooperation between institutions has become a model for us, which we want to adapt. 3. Exchange of good practices The partner allowed us to participate in workshops and meetings with Icelandic specialists, who shared their experiences regarding modern forms of rehabilitation, supporting the inclusion of children in social life and inclusive education. This significantly enriched our knowledge and competence resources. Continuation plan: Development of a comprehensive model of support for the family of a child with a disability Based on the experience gathered in Iceland and other activities within the project, we plan to implement a comprehensive model of support for the family of a child with a disability in cooperation with foreign partners. The model will include: Introduction of a support system at the diagnosis stage, including psychological and information care for parents and creation of an early intervention network that will allow for a quick response to the needs of the child and family.