Table of contents:
Legislative background
In Estonia, social protection for people with disabilities has been gradually developing over the years since independence in 1991. A new level of development was kick-started by Estonia entering the European Union (EU), as EU pre-accession funds and structural funds were made available, largely contributing to improvement of social protection, equal opportunities, de-institutionalization and resolving work-life balance issues.
Since 1 January 2009, it has been possible to apply for childcare for children with disabilities, enabling families to strike a balance in situations where the burden of care is substantial and to preserve their ability to participate in the labour market. Local authorities can provide further support with childcare for children with disabilities, and during the EU 2014–2020 programming period, the European Social Fund also supported staying in the labour market by helping to tackle the burden of care. All these measures have enabled development at the individual level and preserved healthy relations within the family but have predominantly focused on assistance for children. When an individual turns 18 and becomes an adult, the relatively generous offer would disappear.
Having realized that the need for care and guidance remains, becoming even stronger when individuals reach adulthood, Estonian legislators have in 2018 introduced a new service for adults, enabling step-by-step decision-making towards independent living. Legislators foresee 23 days of interval care per month for persons with intellectual disabilities and adults with complex dependency needs, who would be able to try out living independently (with relevant assistance) without needing to immediately decide on a permanent solution; rather, they would be able to map different approaches to find the most suitable one.
Consequently, since 1 January 2018, it has been possible to offer special care services for a limited time (interval care) for adults. A description of the target group for whom the assistance is designed, prepared by the Estonian Social Insurance Board, the authority assigning service users to available places, is presented in the box.
Description of target group for interval care services
The service is intended for a person who has been diagnosed with other intellectual disability (diagnosis code F78), unspecified intellectual disability (diagnosis code F79), a severe intellectual disability or a profound intellectual disability (diagnosis codes F72–F73), who has an extensive need for care, needs constant assistance in activities related to daily life and is not able to perform self-care activities. Therefore, in addition to regular daily support activities, in many cases, they also need care 24 hours during a day, constant assistance or permanent guidance in daily activities by a facilitator/staff member. A person who has a moderate intellectual disability (diagnosis code F71) or who needs a lot of supervision and assistance in daily activities does not require a lot of care.
The purpose of the service is to provide a person with the necessary assistance in daily life activities, enabling them to continue living in their home environment and to postpone placing them in a 24-hour social welfare setting. It also reduces the care burden on those closest to them and supports their work and participation in social life.
What does the service provide?
- A person is guided and assisted in self-care procedures, hygiene procedures and self-service (e.g. changing clothes, changing diapers and sanitary towels, washing and eating).
- A person is also guided and assisted in establishing or maintaining social relationships, time planning, arranging leisure time and participating in hobbies. The activities of support groups are also carried out and support is provided for participation in such activities.
- The service shapes and develops a person’s daily life skills according to their abilities. Job-like activities that correspond to a person’s abilities are also provided. If necessary, the service advises those closest to the person, providing specific information about the person’s health/diagnosis and behaviour.
Source: Republic of Estonia, Social Insurance Board (n.d.c). Erihoolekandeteenused (Social care services).
In recent years, policy makers have moved away from descriptions of a particular group’s need for assistance such as the one above, instead aiming for every person in need of help – regardless of their diagnosis, administrative status or whether or not they have disabilities – to receive assistance.
In reality, as often a lot of assistance is provided at municipal level, Estonian organizations of persons with disabilities are concerned that assistance will often be refused, and based on that have launched a dual approach: advocating for high-quality assessments of needs that would lead to both administrative status for persons with disabilities as well as wider availability of services to all who need them, regardless of their administrative status. This is in line with the CRPD definition of persons with disabilities, provided in Article 1: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.
It is the removal of barriers, together with increasing the number of individuals benefiting from help, that will enable the realization of independent living. A step towards a more flexible approach that gives all stakeholders time to get used to a new living situation has been the aim of the interval care for adults services, which will be looked at closer later in this paper.