It is normal to say that we are still far from Sweden, but we are already very close to Sweden in some areas. At least in Alytus, Lithuania and at least regarding personal assistance services. Is it hard to believe? It is possible, when you want and try to connect the community to a common goal!
In the past, in Alytus, as in the whole of Lithuania, support through personal assistance was provided to disabled people through social rehabilitation projects, but this service did not meet the true mission of personal assistance. For information, personal assistance is a tool for independent living, which means that the person is the one who should choose and decide about how he/she wants to live.
The word “personal” emphasizes individuality, which means that a person can choose a service provider, a personal assistant, time at which assistance will be carried out, place where assistance will be carried out, and the way in which assistance should be provided.
In Sweden, for example, a personal assistance service has been provided for many years (a pilot project was launched in 1987 and services have been approved since 1994).
This service is also now available to residents of Alytus, since September of this year.
Alytus is the first municipality in Lithuania that runs a personal assistance service (currently a pilot project), which is carried out independently of the pilot projects of the Ministry of Social Security and Labour, which are supported by the European Union funds. Alytus carries this out through its own funding, in accordance with the Ministry guidelines – drafted by our working group – which regulate the delivery of personal assistance services and the activities of personal assistance.
In the Alytus municipality, funding for personal assistance services was provided by extending the employment enhancement programme. As a result, four personal assistants are employed by three non-governmental organizations that won the competition. With this financing model, Alytus is close to Sweden, as the city itself provides the financing and not the disabled person. The person does not pay for the service from their own funds. In Sweden, the system is a little different – direct payments are allocated, through which a disabled person pays independently for personal assistance.
Why does a disabled person need a personal assistant? Because disabled people want to be independent, to control their own life, to have the freedom to live as they want, to be, to travel or to participate where they want. As the personal assistance service is intended to facilitate the main functions of the person’s life, and to ensure the independence of a disabled person, the following four main functions are distinguished: personal hygiene, eating, mobility and then social relations and environment as one function. In each case, it is individually decided which assistance measures are necessary.
Of course, it is to be understood that a personal assistant is not a personal servant. A personal assistant is to help with daily activities, which disabled persons themselves cannot carry out. A personal assistant does not do everything for the person who needs support – the two do things together. Depending on the nature of the impairment, there are tasks that are performed only by a personal assistant. For example, if it is hard for you to lift something, the personal assistant will lift it, but you will continue to do the work yourself.
In my own case, I had the opportunity to choose a service provider, that understood my needs during the first meeting. We have signed a contract for the provision of a personal assistance service, which specifies hours that I have been given. I was given the opportunity to use an assistant for 10 hours a week, choosing how much, when and where I need the support most. It does not matter whether it is a workday or a weekend. Until now, my personal assistant met all my expectations, so I do not plan to replace her with someone else, but there is such possibility.
I have the freedom to choose when I need support most and I inform the NGO through which I have my personal assistant in advance. It can be at 8 o’clock in the morning or 6 o’clock in the evening, I choose where the support is needed – whether to travel to/from work, a university, a public office, shop, gas station or simply to help me at home if needed.
I choose myself how much support should be given – in other words, what I need support with and what I can do myself. I mostly need assistance with moving around; i.e. helping to get to the right place, for shopping, going to a hairdresser, a dentist, my workplace, a car wash or just to get fuel at a petrol station. Support in moving around is especially needed, in my case, during the winter, when it becomes extremely difficult or impossible to travel independently.
Sometimes, I ask my personal assistant for support at home, when I need to reach for something, for example, or to carry a bucket with water when I am washing the floor. My personal assistant also helps me prepare food at home, so we often make pancakes, cabbage rolls and prepare other dishes together.
I can safely say that personal assistance is a service that allows a person to remain dignified and independent. I hope that more and more Lithuanian municipalities will join Alytus, and more and more disabled people will have the opportunity to live their lives independently.
Sweden is not really so far away.
Kristina Dūdonytė
Activist for human rights of persons with disabilities