Persons disabled since childhood with severe functional impairments: medical-social portrait

Aim. To study of medical and social characteristics of persons disabled since childhood of the first group, their needs for various types of rehabilitation and care for the development of a medical-social model of personal assistance.

Methods. A sample study of 194 persons disabled since childhood of the first group in eight regions of the Russian Federation was conducted using a specially developed methodology. The calculations were performed by using the IBM SPSS Statistics Viewer 23.

Results. The state of health of persons disabled since childhood of the first group is characterized by polymorphism and polymorbidity. 64.3% of people with disabilities have multiple dysfunctions of organs and systems. In this regard, there are pronounced restrictions on the main categories of life activity. Half of the caregivers (47.4%) spend more than 8 hours a day on organizing care for persons disabled since childhood of the first group; between 4 and 8 hours — 29.8%; between 2 and 3 hours — 12.9%; less than 2 hours — 4.1%. It was found that 32.7% of families spend more than half of their family budget on care (organization of medical and household care, transportation and relocation, organization of training, communication in accordance with age). At the same time, only 30.0% of caregivers work, the remaining 70.0% do not work (do not receive seniority) and will not be able to claim a labor pension. Persons disabled since childhood of the first group are characterized by pronounced restrictions on the main categories of life, the need for constant and regular care of all types, however, 28.4% of this group of people can self-service themselves or with little help from other people. With the presented medical-social portrait, state support for this category of citizens should be carried out in a differentiated manner. The “personal assistance” model allows parents/guardians of persons disabled since childhood of the first group not only to care for a family member but also to find employment as a personal assistant.

Conclusion. Families with persons disabled since childhood of the first group need differentiated support that will allow parents/guardians to care for their family members and work; the “personal assistance” model could solve these problems.