The history of the adoption of the Personal Assistance Law in Bulgaria and its subsequent controversial effect - 2009-2023

Mitko Nikolov is a long time Independent Living activist and the leader of the CIL Sofia

Admission history

The Law on Personal Assistance (PAA) was adopted in Bulgaria in 2018 after a long struggle by several groups of people with disabilities. An initial initiative was the Center for Independent Life (CIL) - a non-governmental organization of disabled people with over 20 years of expertise in protecting the rights of disabled people and their empowerment. In 2009, a group of people with severe physical disabilities, with the support of lawyers, studied the European and world experience and, especially that of Sweden and Norway, and developed a draft of the PAA. In it, they combined the best practices from the experience of other countries and complied with the current Bulgarian legal norms.

During the next 7-8 years, the draft of the PAA was submitted to 3 Bulgarian Parliaments and meetings were held with their chairmen, as well as with deputies, with the aim of its submission and consideration by the legislators. A number of campaigns were also conducted to publicize the ideas and philosophy of the proposed draft of the PAA, as well as to find like-minded people to increase the group of advocates for the adoption of the law. Unfortunately, these attempts were unsuccessful.

During these same 7-8 years, the movement of mothers of disabled children emerged who were dissatisfied with the support - at that time - that the state provided to their children and to them as parents of disabled children. Therefore, they recognized the PAA as an opportunity to solve their problems and, together with the National Health Service, acted for its adoption. But over time, it turned out that the parents' understanding of the philosophy of the law differed from that of the Center, and they, together with the institution of the Ombudsman of Bulgaria, reworked the initial proposal of the PAA of the CNJ. In their version, the individual needs assessment was crippled, the hourly rate slashed, the scope of eligibility widened, and the parent-assistant cap removed.

Unfortunately, through enormous pressure from the parents' movement and the institution of the Ombudsman of Bulgaria, in 2018 their version of the PAA was adopted by the Bulgarian parliament, ignoring the objections of the CIL that this law does not profess the philosophy of independent living and The United Nations Convention on the Rights of Persons with Disabilities, does not empower disabled people who need daily support to get out of bed, but benefits parents of disabled people and turns the PPA into a law to provide financial support to parents.

Implementation of PAA

The law came into effect on January 1, 2019, and according to the 2022 report of the Social Assistance Agency (SAA) - the body for implementing the Social Welfare Act - in 2022, 43,534 average monthly number of beneficiaries benefited from it, which cost the state budget BGN 439,448,116.

At the moment, there are many criticisms of the law of a different nature, and they all depend on how you look at it - parents want an increase in the hourly rate, an even wider opening of the scope of entitlements, an increase in the ceiling of hours, all things that increase the financial income of the families of people with disabilities; while people with severe physical dependence themselves and a small part of parents realize that the law increasingly leads to the dependence of disabled people on their families and therefore demand an individual assessment based on the real needs of each person, limiting the possibility of parents being assistants and narrowing the scope of those entitled to people with severe physical dependence of working age and children with disabilities.

In 2023, the parameters of PAA are as follows - the ceiling of the possible hours that a person/child with a disability can use under PAA is 168 (which is a maximum of 8 hours per day and only on working days), the individual assessment does not determines the necessary hours of personal assistance, and groups disabled people into 4 groups according to the degree of disability and sets a lower and upper limit of the possible hours for the group, the hourly rate is 1.2 of the minimum wage for the country (780 BGN or less than 400 euro), the beneficiaries are almost all disabled people who have a TELK decision (outdated system for assessing the ability to work), the personal assistant cannot be used outside the municipality where the beneficiary lives and there is no restriction on hiring relatives as assistants.

During these 4 and a half years of the implementation of the PAA, we from the CIL have wanted an independent analysis of its action and whether it leads to a change in the quality of life of disabled Bulgarians in need of personal assistance. There is no such analysis to date, but the ASP is obliged under the PAA to prepare its own such analysis for the implementation of the law, and last year it published one for 2021. After familiarizing ourselves with it, we can highlight many indicative data:

• about 60% of the beneficiaries are people over working age, i.e. resource flows to people who need another type of assistant support;

• the total number of assistants is almost as many as there are beneficiaries, which suggests that many people with disabilities use 1 assistant;

• out of all the more than 45,000 people with disabilities who benefited from PPA, only 173 started work. It is mentioned that there are also people who have continued their education, but no number is given. All this shows that the change in the quality of life has occurred in just under 0.03% of people with disabilities who use PAA.

However, the conclusions of the ASP are entirely positive, although the following is taken into account: "Looking at the participation of family members who provide care as assistants, we should note that this gives them the opportunity to enter the labor market and at the same time not to terminate the care. In this way, the financial situation of the family is supported, as well as giving the caregiver the opportunity to acquire and accumulate work experience. This mostly applies to parents of children with disabilities." and "There is a tendency to appoint people from the family circle of the service users as assistants.", and also "The Personal Assistance Act enables people from the family circle of persons with disabilities to become assistants, which provides them with work experience, social security and, last but not least, income."

We cannot fail to note the findings of one municipality (municipalities under the PAA are the providers of personal assistance service), which directly states "The feeling is that the state guarantees financial support for the close family circle, and not adequate assistance for the person with a disability to ensure basic rights and provision of daily needs." Unfortunately, this problem has been noticed (or expressed) by only one municipality and the experts in SAA do not pay enough attention to it.

In conclusion, we can say that in this form, the PAA does not at all contribute to changing the quality of life of people with disabilities in Bulgaria, does not follow the philosophy of the UN Convention on the Rights of People with Disabilities, and needs a complete change.

The next article in the Disability Rights Defenders Newsletter September 2023 is:

• PA: What's the current situation in Finland? - Sanni Purhonen