To start, let’s explore what personal assistance (PA) is and what purpose it serves. European Network on Independent Living, an international disabled people’s organisation (DPO) that advocates for independent living for all groups of disabled people defines PA in the following manner:
Personal assistance is a tool which allows for Independent living. Personal assistance is purchased through earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed. Personal assistance should be provided on the basis of an individual needs assessment and depending on the life situation of each individual.
It needs to be clarified here, that living independently does not mean to leave alone nor does it signify our ability to execute all daily tasks without help but rather refers to the freedom of choice and control over our lives and a maximum degree of autonomy while deciding for ourselves in which way to live our own lives. Access to personal assistance is a human right enshrined in Article 19 of the UN Convention on the Rights of Persons with Disabilities. This service should enable the users to participate equally in all aspects of family life, work, school, leisure activities, travels or public and political life.
UN Committee on the Rights of Persons with Disabilities, an expert body designated to monitor the implementation of the Convention and to provide an expert authoritative interpretation of the Convention’s provisions, in its General Comment no. 5 states that personal assistance refers to person-directed/“user”-led human support which is a tool for independent living. The Committee lays out further claims related to self-management of personal assistance:
Persons with disabilities who require personal assistance can freely choose their degree of personal control over service delivery according to their life circumstances and preferences. Even if the responsibilities of “the employer” are contracted out, the person with disability always remains at the centre of the decisions concerning the assistance, the one to whom any inquiries must be directed and whose individual preferences must be respected. The control of personal assistance can be exercised through supported decision-making.
(UN Committee on the Rights of Persons with Disabilities, 2017, para. 16 (d) (iv))
These definitions indicate that the essential purpose of personal assistance is to provide support to disabled people in executing daily activities to the extent needed so that they retain choice and control over their lives and be in a position to choose where and with whom they will live instead of being forced to live in closed residential institutions. There is nothing in these definitions to suggest that the PA service should not be provided to people with learning difficulties. On the contrary, it has been emphasized that the purpose of this service is exactly to prevent disabled people from ending up locked in institutional care and that the control over the service may be exercised by means of supported decision-making (another type of support provided usually for people with intellectual and psychosocial impairments which represents the alternative to legal capacity deprivation). However, the possibility of applying for and using personal assistance has been taken away from this group of people in Serbia. How is this happening and why?
Personal assistance has been recognised in the Serbian legal framework in the Law on Social Protection where it is classified as a support service for independent living (Article 40 (3)) which should be funded by the local municipalities. Given that local authorities are not obliged to provide this service for its citizens who may need it, the service is conceived only as a possibility, not as a right, if the citizens are lucky enough that local authorities wish to provide funds for the PA service. PA service is currently being provided for 285 users with physical impairments on the whole territory of Serbia, across 17 municipalities, only (Mental Disability Rights Initiative – Serbia, 2022).
These pioneering steps towards introducing personal assistance in Serbia have not envisaged the possibility for people with learning difficulties to use the assistance. The Rulebook on Minimum Standards and Conditions for Social Service Provision which elaborates the requirements to be fulfilled before applying for personal assistance (Article 99) demands that the users „possess the ability for independent decision-making“ which places people with learning difficulties in an unfavourable position due to their cognitive abilities and prevents them from having the assistance.
Similar provisions in Finland have led a disabled person to seek justice by filing an individual complaint to the UN Committee on the Rights of Persons with Disabilities. In a recent decision upon individual complaint, the UN Committee held Finland responsible for discrimination against people with intellectual impairments and ordered Finland to rectify contested provisions.
The complaint was submitted by a 40-year-old person with an intellectual impairment who needs 24-hour assistance for all daily tasks and activities. The author pointed out that Finnish law prescribes that the applicant has to possess the ability to determine the content and modalities of assistance. Such criteria, in a similar manner as in Serbia, have effectively limited the access to personal assistance for people with intellectual impairments. Given that the author of the complaint is a person with complex support needs and that he communicates through gestures and single words, the court in Finland interpreted his condition as such that it prevents him to determine what he needs assistance for and denied him the opportunity to use the assistance to help him to live in his own home. For this reason, he was forced to move back with his parents and live with them. Had it not been for their support, the only remaining option would have been to be placed in institutional care.
In its decision the UN Committee expounded several key findings that bear relevance to the system of social protection in Serbia:
- All support services must be designed to support living within the community, preventing isolation and segregation from others and must in actuality be suitable for this purpose;
- Refusing access to assistance based on the grounds that he would be unable to choose represents an ableist argument contravening the human rights model of disability;
- Refusing access to personal assistance has in effect prevented him from living in the community and being involved in it;
- Eligibility criteria for personal assistance which refer to cognitive ability to determine the content of assistance (or in the case of the Rulebook in Serbia – „ability for independent decision-making“) result in indirect discrimination because seemingly neutral provision places people with intellectual impairments as a group, in an unfavourable position.
Bearing in mind that everyone’s mental capacities differ, it is not possible to limit the enjoyment of human rights on the grounds of differing abilities nor to determine the threshold of mental abilities under which a person would deserve to be deprived of the enjoyment of human rights. Moreover, autonomy and control over one’s life do not depend on mental abilities since no one makes decisions in isolation from others and we all rather make our life decisions while embedded in the relationships with people that surround us, consulting with them and getting the support when needed. Such understanding of autonomy indicates that we are all interdependent and that mutual exchange is a common feature of human existence. Instead of limiting the access to needed services due to cognitive impairment, the state would do better to reconsider the role of the family and environment in controlling and coordinating personal assistance to enable people with learning difficulties to use the PA service to pursue their life goals and preferences.
Unless the Republic of Serbia wants to face the complaints as Finland before the international human rights mechanisms, the state should urgently reform the legal framework and eliminate discriminatory eligibility criteria, introduce individualized needs assessment and guarantee access to personal assistance on the basis of assessed needs.
References
Committee on the Rights of Persons with Disabilities 2022. Decision adopted by the Committee under article 5 of the Optional Protocol, concerning communication No. 46/2018
Committee on the Rights of Persons with Disabilities 2017. General comment on article 19: Living independently and being included in the community.
European Network on Independent Living 2014. Myth Buster. Independent Living. Brussels: European Network on Independent Living.
Mental Disability Rights Initiative – Serbia 2022. (forthcoming) The Position of Persons with Disabilities in Serbia – Zero Report. Belgrade: Mental Disability Rights Initiative – Serbia.
