Personal assistance is “an instrument which enables a disabled person to lead an independent living (IL). Personal assistance (PA) is the direct and targeted financing of people with disabilities to pay the assistants for the work that a person needs because of a disability.

PA should be provided on the basis of an individual assessment of needs, depending on each person’s life situation and at prices appropriate to the cost of labor at the internal market. People with disabilities should have the right to hire and manage their assistants and to choose the employment model which best suits to their needs. Funds made available for PAs should cover the salaries of the assistants, their other costs arisen from their employment and legal relations, such as contributions for the employer, as well as the costs of providing the service itself, such as administrative and peer support for the beneficiary of personal assistance. “

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Few understand the difference between an assistant service (understood in Native way of thinking) and personal assistance (understood according European values), but fortunately there are those who share their position on social networks, where I read: “Personal assistance is a qualitatively different political tool from the social assistance or social services – the things we know for better or bad. Personal assistance guarantees the disabled person INDEPENDENCE, it equalizes his and my abilities, it provides independence at all levels – everyday, civil, personal, independence from family as well. This last one is still not widely understood – “how does ANYONE take care of my child who has a disability, can’t swallow his/her saliva, can’t talk …” This type of parents insists on them being personal assistants to their children (it also came from the government’s personal assistance programs which offered this like employment programs – the mother gets money to help her child). But this is no longer personal assistance, this approach does not guarantee the independence of the disabled person, but rather, it makes him dependent on his/her relatives. “

Unfortunately, the above understanding, articulated very clearly and precisely, is rare, including among people with disabilities, and even less so among their families and relatives. Unfortunately, the bill, drafted and tabled by the Ombudsman of the Republic of Bulgaria, bears the mark of misunderstanding and the archaic approach to the social functions and capabilities of the state. Moreover, the bill contains provisions that deviate from the above principles and requirements of the UN Convention on the Rights of Persons with Disabilities.

The general philosophy of the proposed bill places assistants and service providers at the center of regulation. Proof of this is the multiple requirements for assistants and the broad control functions of suppliers not only in terms of monetary costs but also in the quality of service. This contradicts to the main feature of PA consisted in the above definition of the European Network of Independent Living.

The role assigned to the provider is not financially provided in the form of a percentage supplement to the hourly rate for administering the service. This will lead to the monopoly position of municipal administrations as service providers and will eliminate non-governmental organizations or other private service providers from the service market. On the other hand, it violates the right of every disabled person to choose their supplier.

The hourly rate – 1.1 times the minimum wage for the country, rising to 1.5 by 2021 – will not allow people with disabilities to hire assistants in the labor market, respecting the labor law. The experience has shown that at the rate currently applied under the Sofia Municipality Ordinance on the provision of the Independent Living Assistant service, over 90% of the users live at the same address as their assistant. It is legitimate to assume that assistants are predominantly, if not only, in the user’s family circle, which leads to the formation of a double dependency: on the one hand, the emotional attachment, on the other, the financial dependence of the assisting relative, who gets detached from the labor market and becomes completely dependent on payments as an assistant. And third, perhaps most important in the context of the human rights, the so-called “personal assistance” will not lead to any change in the life of the disabled person.

Moreover, the low hourly rate will cause potential users to speculate about the need for hours – sometimes justifiably, sometimes self-interested – to overcharge hours, to distort the accountability, to provide more resources in order to meet needs or family income. An additional prerequisite for this is the lack of a limit on hours per month (as it should be, but under other conditions and subject to restrictions on the use of hours for personal assistance by relatives as assistants), which facilitates the task and creates the potential for multiple appeals on decisions for personal assistance.

There are good reasons to raise the question about the disabled people who do not have families or relatives. The “personal assistance” in the version proposed by Maya Manolova does not answer this question, but it is clear: these people will end up in institutions – large and hideous homes or small, neat homes – or people deprived of rights and resources to do their life choices.

Finally, the UN Committee on the Rights of Persons with Disabilities came up with General Comment No. 5 on Article 19 of the Convention on the Rights of Persons with Disabilities of 31 August 2017, which provides clear guidance on the nature of personal assistance as an instrument of independent living. in the community

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Given the mentioned above shortcomings of the proposed draft law on personal assistance for people with disabilities, and many others that are more technological but not insignificant, it is reasonable to argue that it does not correspond to the principles, values and provisions of the UN Convention on the rights of people with disabilities.

Kapka Panayotov

Chairman of the Board of the Directors

Independent Living Center