The birth of a child with special needs inevitably affects the change in family dynamics. Members of the family are forced to find new patterns of action, to establish a balance, and are pressured into taking a new identity - the identity of disability. The subject of the research are families with children with special needs, expressing a special need in family dynamics with the emphasis on facing a child’s special need, meeting the needs, changes in existing roles, facing challenges and necessary adjustments, experiencing social inclusion and exclusion, making use of assistance, necessary additional assistance and support, information on possible sources of assistance and support, experience of satisfaction with the assistance process, and, last but not least, the future of the assistance process. Families with children with special needs are vulnerable, weak and helpless in establishing a balance, and therefore need social support and support of various specialist services. The subject of research are also professionals, their understanding of the concept of a child with special needs, understanding of the family’s needs, a type of assistance and support they can offer, information on potential sources in Slovenia and abroad, the possibilities of professional development, experiencing interactions with families and, last but not least, prospects of improving the assistance process.
In the methodology we conducted interviews with ten families with children with special needs through a qualitative research approach and a technique of a semi-structured interview. These families had the experience of working with specialist services in the field of care for more vulnerable families from governmental and non-governmental organizations as well as with ten professionals from these fields. For this reason we have designed two different questionnaires, specifically for families and specifically for professionals. The transcription of interviews was followed by the encryption of statements within individual phases. The data obtained was presented descriptively and in the tables. By interpreting the results, we deepened our understanding of the power of birth of a child with special needs, of the concept of working relationship towards assistance for families with children with special needs, and the prospects of the needs of the family and professionals in the assistance process.
We find that the current assistance does not make it possible to resolve distress and troubles; families are overlooked, invisible, not considered, lacking sufficient sources of information, adjustments and support, they are victims of stigmatization, exclusion, they are placed in an unequal position with others and are dissatisfied with specialist services due to limited financial resources. Social support to families is most commonly given by relatives, professionals and friends. Social worker is mentioned as an example of good practice. Professionals say that they do not have a satisfactory additional education, networking between specialist services, as well as not enough teamwork. According to their experience, families are unresponsive, non-cooperative, they expect immediate results, they do not respect agreements and judge professional work. Based on the research we propose a complete, integrated and individualized approach, based exclusively on the needs of families with children with special needs and covering modern concepts of the assistance process, including suggestions for improvements for an easier social inclusion of families with children with special needs. The purpose of improving is the quality and effectiveness of performance of family-oriented services.
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