Tough struggle for personal assistance in Iceland

Only about fifteen people receive personal assistance payments in Iceland, but new legislation is under discussion and interest is rising. According to representatives of the newly formed NPA Center cooperative, however, there is resistance within the disability movement. In addition, the personal assistance agreements may be too miserly because of the economic crisis. Today special housing solutions dominate the scene with common personnel groups, where according to Embla Agustsdottir from NPA Center, it is hard to live an independent life.

Visit to Stockholm to learn about personal assistance

Embla Agustsdottir
Freyja Haraldsdottir, Embla Agustsdottir and Hallgrimur Eymundsson are active in the NPA Center cooperative, which was launched in Reykjavik, Iceland in July 2010. All three recently traveled to Stockholm to visit the user cooperatives STIL and JAG and get advice and support in their continued efforts. The NPA Center cooperative has 33 members, three of whom have personal assistance. The cooperative does not yet provide personal assistance services, but supports assistance users and promotes more personal assistance in Iceland. Embla Agustsdottir, who is currently applying for personal assistance in her municipality, is glad that Sweden has come so far.
“It’s difficult to see the possibilities at home and it’s encouraging to see what’s happening in Sweden and that it is indeed possible to implement.”

Fifteen people receive personal assistance in Iceland so far

Personal assistance is a new phenomenon in Iceland. Freyja Haraldsdottir, who has personal assistance, says that only about fifteen people have received assistance so far. However, those who receive payments for personal assistance don’t have enough money to get the support they need, she says; some only have personal assistance a few times a day even though they need it all day long. 

“The average is 8 hours per day for people with extensive needs. Another woman and I are exceptions because we have assistance 16 hours per day. I actually need assistance all day long and the rest of the time I receive help from my parents, from whom I rent an apartment.”

Like all assistance users in Iceland, Freyja Haraldsdottir employs her assistants herself.  “There are some private companies, but they are more geared toward pure care, they don’t see things from an independent living perspective, but provide assistance with things like hygiene and food.”

Money given only for assistant salaries

Freyja Haraldsdottir
Those granted personal assistance receive a sum of money that is supposed to be enough to cover wages for the assistants. Once a year personal assistance users have to show how they used the money and how they paid the assistants. “After much struggle, bringing one’s assistants along when we are hospitalized has just been accepted,” says Freyja Haraldsdottir, but if an assistant is sick, no additional compensation is provided. 

“The money is given only for wages for assistants, nothing is given for substitute staff, administrative costs or expenses for assistants who accompany the user around town or while travelling.” 

So you don’t receive money to be able to bring your assistant to Sweden?
“No, I have to pay for that myself.”
Is there any age limit to be able to apply for personal assistance?
“I don’t know any older people who applied for assistance. Otherwise  67 is the limit where people are considered to be too old for personal assistance and receive support from another agency.” 
What are assistants permitted to do?
“There are no restrictions, it depends on the user. Unfortunately some people are exploited,” says Freyja Haraldsdottir and tells of an assistance user who has a person working almost around the clock for a low salary. 
“This particular assistance user needs extensive help, but only receives money to pay for four hours a day, so this is how he’s handling an impossible situation. It shows how important it is to create a working cooperative with guidance and advice and to have more assistance time granted. The assistants have to receive proper wages governed by agreements.”

Municipalities to take over January 1, 2011

In Iceland government and municipalities share responsibility for granting personal assistance payments. Freyja Haraldsdottir received her contract three years ago, and had struggled with applications for three years. She made a list and reported what assistance she needed and submitted an application to the government and the municipality, which worked out the compensation together.

“I don’t know how they decide how much money the user gets, we have no idea about that. It varies among the municipalities, though the government pays most of the cost and the municipality pays maybe twenty percent. But from January 1, 2011, the municipalities will take over all support for the disabled.”

Many don’t apply for personal assistance because of low compensation

Hallgrimur Eymundsson
Hallgrimur Eymundsson is 32 years old and lives in Reykjavik. He is a deputy on the Board of Directors for the NPA Center cooperative. He does not receive personal assistance today, but lives in a group home. He notes that the personal assistance money does not go very far, which is a problem that makes many people reluctant to apply for personal assistance.

“So little money is available that you’re really better off staying in the regular system. 
The government is still cutting back on spending because of the financial crisis, which can also make it difficult to get a good contract with the municipality where users reside. The municipality may choose to make a deal that benefits them so they can save money. I think this will become a growing problem.”

Struggling against the disability movement

Embla Agustsdottir says that the bulk of government support for people with disabilities, about 60 percent, goes to special housing solutions, but all this will now be taken over by the municipalities. She is critical of the established disability movement in Iceland because she feels it only works to obtain funding for residential institutions and special housing, rather than for personal assistance, which she feels is the key to an independent living.
“The new ideas are beginning to be spread, but many people do not agree with us because they accept the old solutions.”
So you’re fighting the disability movement, too?
“Yes, at least on this issue. The disability movement prefers to stay on the right side of the authorities and obtain grants, rather than working for human rights.”

Many do not understand the lack of freedom for people living in group housing

“A person with a disability who does not have personal assistance either receives support in a special housing facility or from family members,” says Embla Agustsdottir, who is working on applying for personal assistance and is paying the person assisting her on the trip to Stockholm with her own money. In Iceland she lives at home with her parents and next year she will begin studying at the university.
“I’ll have to move away from home and will need personal assistance to live independently.” 

Living in group housing is very difficult to combine with living an independent life, according to Embla Agustsdottir, who tells about a friend who lives in group housing and is studying at the university.
“The housing facility staff are not allowed to accompany her to the university. In order to go to the bathroom she has to travel 40 kilometers to return home to get help going to the bathroom, and then drive back to school. Obviously something is  very wrong. People often don’t understand the lack of freedom in the housing facilities, many believe they can control their lives there,” says Embla Agustsdottir.

The situation in Iceland can be compared to Sweden before assistance came in 1994, when there was an extensive system of cluster housing with shared staff (boendeservice). Hallgrimur Eymundsson has an apartment in a group housing facility where the residents share the staff. 
“Someone will come if I call, maybe within a half hour, but I don’t get any help for anything outside the walls of the building.”

How did you come to Sweden?
“I have a friend with me, but he doesn’t get paid for helping me here.

New legislation on personal assistance expected—possibly next year

The political parties like the idea of personal assistance in general, according to Hallgrimur Eymundsson, and legislation is under discussion.
“They say it will be completed this autumn, but it may well take longer because of the financial crisis and then it has to go through Parliament. But it’s important for the law to be good, so it may take time.”
What would you like the new legislation to look like?
“It should be based on the perspective of independent living; those seeking personal assistance should be able to define their own needs since they are all experts on their own needs. Assistance should be provided regardless of age or type of disability, everyone should have an opportunity to live independently. 
I explain how some regulatory authorities in Sweden are currently working on formulating a needs assessment instrument for personal assistance that would ultimately be used to calculate the total number of minutes of assistance an individual needs in daily life. Hallgrimur Eymundsson is dubious that a person’s needs in life can be measured solely by the questions of others.
“Two people with the exact same disability may not necessarily need the same quantity of assistance time. It also depends on how people live their lives. Individuals should be included and define their own needs. It seems that the authorities in Iceland want to try this approach to the assessments.”
The assistance benefit should also cover more than just wages, according to Hallgrimur Eymundsson. 
“It should be able to cover expenses for assistants, such as tickets for travel and for the movies, expenses for an extra room for the assistant in the home and the cost of relief staff.”

Unions are positive

The NPA Center cooperative has already initiated a dialog with the trade unions, according to Freyja Haraldsdottir. One trade union has contacted the cooperative because it wants to organize this future occupational group. Freyja Haraldsdottir has also signed an agreement with a trade union for her assistants. 
“There was some discussion about working hours, for example, whether the assistants should be able to work sixteen hours from eight in the morning until midnight. It was a bit hard for them to understand, but we reached an agreement and the union accepted it as long as my employee accepted it,” says Freyja Haraldsdottir.

Freyja Haraldsdottir, Embla Agustsdottir and Hallgrimur Eymundsson were interviewed by Kenneth Westberg 15 September 2010

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