In Finland personal assistance will become a right on September 1, 2009. However, dissatisfaction is great because municipalities can still decide how assistance should be provided.
A person with a disability currently has no right to a personal assistant in Finland; instead personal assistance is provided as a complement to cluster housing (individuals who need personal assistance live in their own apartments within regular apartment blocks but share staff) if the municipality approves it. To date, young people and people of working age with disabilities are the primary recipients of personal assistance. Beginning on September 1, 2009, it will be a right and people who are autistic, visually impaired or who have intellectual and mental disabilities will be able to receive personal assistance.
Ulf Gustafsson, Secretary General of the Federation of Swedish-speaking Disabled in Finland, sees the new law as an important step. “Assistance will be free of charge and the municipality must provide it, they can no longer blame the budget.”
How much personal assistance is provided today?
“It varies greatly, about ten percent of the country’s 300 municipalities approve no assistance, while others may provide a maximum of 90 hours per week. Today I have 88 hours per week, but I hope that the new law will mean that I eventually get more hours.”
Under the current system, people with disabilities employ their assistants. The draft bill proposes that the municipality, an association, a cooperative or a company could now also serve as employer, but the municipality should be able to determine who will provide assistance. Elina Akaan Penttilä from Helsinki, a lawyer at the Finnish Association of People with Physical Disabilities, spoke as an expert to parliament before the new law was adopted on October 8 this year. “I’m very unhappy that the municipalities are allowed to decide who should be the employer.”
How does it work today?
“About the same, with the difference that personal assistance is not a right. In my case, there won’t be much difference because my municipality provides me with assistance. However, it will be better for those who haven’t received assistance in the past,” says Elina Akaan Penttilä. She also believes that assistance hours will increase slightly. “Today I have 60 hours per week; it will probably be a little more, because now assistance will also be provided for leisure needs outside the home, which is said to be ten hours per month.”
What about expenses for assistants today?
“Usually you don’t get anything, but I have extra funds to be able to carry out my job. My assistant receives a salary from the municipality, but they don’t pay for expenses such as business trips.”
Will that change with the new law?
“Let’s hope so, but I’m not sure.”
“In municipalities that currently do not provide personal assistance, people with major disabilities live in cluster housing facilities,” says Ulf Gustafsson, who lives in a rented apartment in central Helsinki. “In this form of housing you have to share the staff with other residents, which means a regulated life in which the house rules must be followed. It is not common for anyone there to have a job.”
The cluster housing system began in the early seventies. At first they were large units, which have gradually become smaller, and many who live there won’t want to move even if they receive personal assistance, according to Ulf Gustafsson. “Personal assistance may seem frightening for many, if you’ve lived in cluster housing for many years and celebrated Christmas together, it’s become like a family.”
Can those who want to still live there?
“Absolutely, then you get your assistance in the group home, but it will only be ten hours per month for recreational needs, which will be increased to thirty hours per month from 2011, if it turns out as promised.”
The government will provide one third of the cost of personal assistance, but the Association of Finnish Local and Regional Authorities has been critical because the new law will be too expensive for the municipalities. Elina Akaan Penttilä hopes there will be personal assistance companies run by people with disabilities. When she works she has an assistant whom she employs. “Today, unfortunately I have to live in a cluster housing facility because my municipality does not provide round the clock personal assistance, which I need to be able to live on my own. In other words, I can’t choose where I want to live or do what I want when I want.”
Will your situation will change when the new law comes?
“The municipality still has the right to choose who will be in charge of the assistance and which group housing situation I’ll live in, as long as I don’t have enough assistance to be able to live independently. So my situation will continue to depend on the good will of the municipality.”
Will you continue to work on a new law after the one that comes next year? “Yes, of course, we want a law similar to the Swedish act, it’s much better than the one we’ll have in Finland,” says Elina Akaan Penttilä.
The compensation provided for assistance will cover salaries to assistants as well as costs for centers that train assistance users in supervisor role and assistants. These centers will be run by disability organizations with funding provided by the Finnish gaming monopoly, though in the future it will also be financed by the municipalities. Ulf Gustafsson hopes there will be four pilot centers in operation at the end of 2009.
“Employers and supervisors in particular will receive guidance and support there. They will also recruit, train and provide assistants for temporary needs. The users, 100-300 per center, and the founding organizations will elect a supervisory board, which in turn will elect a board of directors on which users will be represented.”
What support will you be able to receive from such a center?
“I’ll receive support for assistant-related problems, such as recruitment, payroll and substitutes.”
I ask Ulf Gustafsson what duties an assistant is permitted to do in Finland, since many municipalities in Sweden feel that assistants should not be expected to do certain tasks, such as taking care of a garden. “The assistant’s duties are based on an employment agreement between the employer with the disability and the assistant. What the agreement covers is solely decided by the contracting parties.”
Although Ulf Gustafsson is pleased with much of the new legislation, he also sees some cause for concern. “Some people worry that people with mild disabilities might not get the help they need, because they won’t qualify for assistance.”
Will two classes arise, one that receives a lot of support and one that doesn’t get any?
“Absolutely and it’s also unclear what will happen for people with psychosocial problems who, for example, can’t handle going out by themselves. They should be able to get personal assistance according to the spirit of the law, but it is unclear where the line will be drawn.”
Ulf Gustafsson is also afraid that the assistant occupation will be a low-wage job.
“The wages paid for assistance will not be very high, so the question is how interested people will be in working as assistants,” says Ulf Gustafsson.
Ulf Gustafsson and Elina Akaan Penttilä were interviewed by Kenneth Westberg November 28, 2008