The state of Montenegro must, in accordance with the Convention on the Rights of Persons with Disabilities, regulate personal assistance as a stable, long-term and systemic right, available to all persons with disabilities who need it, without discrimination on any grounds and with full control of the user over the support. Anything else constitutes a violation of the Convention and prevents independent living and full inclusion of persons with disabilities in society, the Association of Youth with Disabilities of Montenegro (UMHCG) announced today.
The UMHCG said that in their latest publication "Personal Assistance in Montenegro - a Right of Persons with Disabilities or an Elitist Service?" they analyze the compliance of the national framework with international standards, the state of practice and key obstacles to the full enjoyment of this right, and provide specific recommendations for improving the legal and institutional framework.
"The findings of the publication indicate serious systemic limitations that distance personal assistance in Montenegro from its human rights meaning. All of the above clearly indicates an urgent need for a paradigm shift. We call on the competent institutions to take responsibility and, each within their respective jurisdictions, begin the process of substantially harmonizing laws and practices with the Convention on the Rights of Persons with Disabilities, particularly taking into account the Committee's General Comment No. 5 regarding Article 19 of the Convention and implementing the recommendations presented in the publication," the UMHCG statement states.
The non-governmental organization (NGO) said that personal assistance should not be viewed as a cost, but rather as an investment in the independence, productivity, and realization of the full potential of people with disabilities.
"It is a mechanism that enables the full contribution of persons with disabilities to local communities, society and the state as a whole, which is confirmed by the history of the movement for independent living and the contribution of its most significant advocates. Personal assistance is a human right, guaranteed by the Convention that Montenegro ratified in 2009. It is the right to individual support that a person with a disability controls and manages, and which enables them to live independently and participate fully in the community, on an equal basis with others. Despite this, personal assistance is still wrongly treated in Montenegrin laws and practice as a limited social protection service, instead of as a key mechanism for the realization of fundamental human rights," the UMHCG statement reads.
According to them, personal assistance should not be reduced to pre-prescribed activities, nor should it be equated with other forms of live assistance similar in name or structure.
"Its purpose is not to help the family or 'keep' the person in the family environment, nor is it a substitute for institutional care. On the contrary, it must represent one of the basic alternatives to institutionalization and segregating environments, with the aim of enabling education, work, social, cultural and political participation, in accordance with the individual needs and choices of persons with disabilities. When its scope is limited in advance by laws, by-laws or administrative procedures, the right to independent living remains formally recognized, but essentially unrealized," said the UMHCG.
They said that the practice of relying on family or other restrictive environments as a substitute for systematically organized personal assistance is particularly concerning.
"Such an approach leads to invisible institutionalization within the family, limits the autonomy of persons with disabilities and creates a disproportionate burden on family members. Although personal assistance was defined in the Law on Social and Child Protection in 2013, in practice it is not available to most persons with disabilities. The regulations further limit this right exclusively to adults who simultaneously use certain material benefits and are in the education system or in employment, thus elitizing the service and denying it to a large number of persons, contrary to the Convention. According to publicly available information, the service is currently licensed for only 49 users nationwide, which is unacceptably small coverage, especially compared to the number of persons with disabilities placed in closed and semi-closed institutions or those who use other services whose goal and outcome is not independent living and productivity," the statement reads.
The UMHCG said that an additional problem is the long-standing practice of various forms of live assistance - such as home help, personal companions, teaching assistants, geronto services or even public works by the Employment Service - being incorrectly called personal assistance.
"This creates confusion, renders meaningless the right guaranteed by the Convention and slows down the development of real personal assistance as support for independent living. The way the service is financed and regulated is also a concern. Personal assistance is still financed with high participation from users, although the state has not previously assessed and covered the real costs of persons with disabilities arising from their disability, without clear and fair criteria and without publicly available data on the scope, duration and effects. At the same time, the price of the service is not aligned with its complexity, especially when it includes assistance in meeting personal needs, which leads to the fact that persons with more complex needs cannot in practice provide assistants and exercise the right that is formally theirs," said the UMHCG.
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