Working and parenting with personal assistance

Summary of legislation, interpretations and other developments as of August 2012

In sweden there is a law that defines the rights people with severe functional impairments have to various fully funded services and benefits, including personal assistance. The law also defines requirements for a  functional impairments to be considered severe. This Law is called "The Law about Support and Service for Persons with Certain Functional Impairments (LSS)" and is the subject of regular review. If you are too old or not sufficiently impaired to qualify for LSS services then you may only be entitled to partially funded services according to another law.

The final report “Opportunity to live as others” submitted in 2009 by the committee revising the law proposed a new LSS service: “personal service with support at home.” This new service was intended to be similar to existing home help services available to people with lesser functional impairments in Sweden. It was proposed that this service be provided to individuals who do not qualify for more than 20 hours of personal assistance for basic needs per week and would replace the personal assistance currently funded by local government in Sweden. Lars U Granberg, Social Democratic Party and Vilhelm Ekensteen, Chairman of Ifa, the interest group for individuals eligible for assistance, are highly critical of this proposal. They argue that many users would find that this change would reduce the opportunity to work or to be a parent.

Liberal Party members Maria Lundqvist Brömster and Linnea Darell would like to enhance opportunities for people with disabilities to work and raise a family. They put forth a motion that would require a clearer definition in the LSS law detailing what roles personal assistance can be provided for. Jessica Smaaland, who published the book Våga arbeta [Dare to work], also believes that the legislation should be more clearly written in this regard. Wheelchair user Carina Fasth says that work and parenthood still do not fit the expected image of a person with disabilities. She talks about her need for assistance at work and says it gives her a level playing field.

Various people who are eligible for assistance describe life with children and assistance in a series of interviews. They all point out the risk of an unequal relationship with their partner. Journalist Jonas Franksson says that “personal service with support at home” would mean that full responsibility would fall on his girlfriend. He would never have dared to have children without personal assistance.

The Swedish Social Insurance Agency’s “two-year rule,” which states that extra assistance generally is not approved after the child reaches the age of two years, was also roundly criticized. Carina Fasth, a mother of two who is eligible for assistance, says that this rule is also a source of inequality. Maria Dahl, another mother who is eligible for assistance, tells in an interview about parenthood characterized by a struggle with the Social Insurance Agency to obtain the assistance she needs. They are backed by Linnea  Darell and Maria Lundqvist Brömster, Liberal Party: “Using the needs of the individual as the starting point, a general rule based on the age of the child cannot be applied; the decision must be taken on a case by case basis," says Darell. Hanna Eriksson, an attorney at STIL, compares the situation with the practice that the Social Insurance Agency applies for children with disabilities. In such cases the cut-off is 12 years. She argues that it makes no sense.

Tomas Sundberg, Social Insurance Agency, responds to the criticism by referring to the preparatory work for the LSS bill and argues that the parent can apply for more assistance time for special activities even after the child reaches the age of two years.

According to a Statistics Sweden survey carried out in 2008,  7% of unemployed people with disabilities stated that they would need a personal assistant in order to be able to hold a job. According to Kerstin Fredriksson, Statistics Sweden, the interviewee had to interpret whether "personal assistant” referred to personal assistance from social services, or the personal assistant provided by the Public Employment Service.

Eva Olofsson, the Left Party, responds to a written question about whether the Government will take measures to enable individuals who are eligible for assistance to work in a location other than where they live. The case involved a man who lived in Gothenburg and was forced to turn down a job in Stockholm because the assistance benefit did not cover travel and subsistence expenses at the place of employment. Maria Larsson responded that the Government did not plan to change the assistance benefit to allow for commuting, but noted that it is possible to apply for extra funds from the home municipality.