Ida Ismail
In Albania, people with disabilities face not only physical obstacles and health challenges, but also another invisible enemy: the lack of personal assistance. A right recognized by law, guaranteed by international conventions, but which in practice remains nothing more than an unfulfilled promise.
A service on paper, but not in life
The Albanian government in 2019 approved a decision on personal assistants, but in reality the payment of 8 to 000 lek is so symbolic that it is not enough to employ anyone. Family members are often forced to quit their jobs to become 10-hour caregivers.
"We live in fear of what will happen to us tomorrow," says activist Suela Lala, summarizing the anxiety that accompanies thousands of families.
According to INSTAT, there are over 140.000 registered people with disabilities and about 25% of them do not receive any Services. Minimal economic assistance and family support are often the only option for survival.
Standards that are not respected
The UN Convention on the Rights of Persons with Disabilities requires states to guarantee personal assistance as part of the right to independent living. In Kosovo and North Macedonia, special programs are funded by the state. In Albania, the individual has no contract, no choice, and no control over the quality of the service.
In rural areas, the situation is even more dramatic, as there is a total lack of Services. In Tirana, the uncovered claims are in the dozens. The Commissioner for Protection from Discrimination, Robert Gajda, calls this a form of silent discrimination.
Matilda Zizolli, a lawyer at the Municipality of Tirana, says that the rental bonus and the provision of soft loans are a priority of this institution for people with disabilities. Zizolli added: “There is still work to be done to increase the quality of service and accessibility.”
While Veko, a blind mother, relies only on family members:
"The rent bonus and programs for women are not enough. Without personal assistance, everything remains half-baked."
Voices that show the difference
A 10-month UN pilot project “Leave No One Behind” showed that personal assistance makes the difference between survival and a life of dignity. Kristjana Lee, a 29-year-old lawyer who uses a wheelchair, says:
"10 months with a personal assistant was life. I felt free to go to work, to institutions, to take care of my son."
Another beneficiary was Ervisa, who says that in the absence of a personal assistant she is forced to take a taxi to work, which affects her cost of living.
"Working 8 hours a day is a challenge without assistance. Taxis often don't stop where we want, as the infrastructure is such, and we are forced to ask for help again. Having an assistant gives us dignity, a social life, productivity."
Parenting taboo
One of the most sensitive topics is parenting. People with disabilities are often prejudiced as unfit to be parents. The story of Kristjana and Ervisa shows the opposite. With the right assistance, they not only contribute to society, but also raise children with dedication. “Doctors have no information about the pregnancy of women with disabilities,” says Kristjana, revealing a serious gap in the health system.
The “Koço Gliozheni” Hospital has launched an in vitro fertilization program for people with disabilities. So far, five cases have been successfully completed. According to the authorities, the costs of drugs and equipment have been fully covered, while the staff has been specially trained. A small step, but with great significance.
"It was hard, but it was worth it," says a disabled patient who underwent the in vitro fertilization process at the "Koço Gliozheni" hospital.
Albania has signed the UN Convention on the Rights of Persons with Disabilities since 2012. But, if the goal is European integration, then respecting these rights is not simply an option, but an obligation.
Personal assistance is not a luxury. It is the key that unlocks the door to an independent and dignified life. Until then, the struggles of people with disabilities will remain a daily reminder of how far we are from real equality.
