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Social work with people with neurodegenerative diseases
KUČEROVÁ, Žaneta
The bachelor thesis is focused on people with neurodegenerative diseases, specifically on people with spinal muscular atrophy. The aim of this thesis is to explore the impact that social work has on the lives of people with SMA. Social work intervenes in the lives of people with this disability from an early age, through Early Care and Continuing Institutions that focus on this group of people. Other social services that intervene in the lives of people with SMA include: respite services, care services, personal assistance services, social activation services for families with children, social therapy workshops, social counselling etc. The theoretical part initially focuses on neurodegenerative diseases. It defines the different types that fall there. It is important to mention that not all of them are listed and I follow with a chapter of neuromuscular diseases focusing on muscular dystrophies, where the individual diseases are described and the disease of spinal muscular atrophy is more specified and the subchapters break down the different types. In the next section I try to build on social work in general and get down to the services used by people with disabilities and get down to the state social support system and what benefits they can draw on (care allowance, mobility allowance, special assistance allowance, TP card, ZTP, ZTP/P and ZTP parking card). Towards the end of the theoretical part, I described the benefits of health insurance for people with disabilities, foundations and public collections, which make a significant financial contribution to these people. The research part was conducted based on a qualitative research strategy. The data that emerged from the interviews were categorized as follows. A semi-structured interview technique was used to collect the data, which consisted of 14 open-ended questions. A total of 6 individuals who have spinal muscular atrophy and were willing to participate. The interviews were conducted at a psycho-rehabilitation camp in Pluhův Žďár, which is sponsored by the patient organization SMÁci z.s.
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