Does personal assistance enable people to live normal lives?

Background In Sweden, people with a substantial and permanent disability have been entitled to personal assistance since the personal assistance reform took effect in 1994. To qualify for government attendance allowance, a person must belong to one of the groups predefined in the Act Concerning Support and Service for Persons with Certain Functional Impairments and require personal assistance with their basic daily needs for more than 20 hours a week. Attendance allowance may be granted to people who have not turned 65. Compensation for almost 93 million hours of assistance was paid for a total of 15,877 clients in 2010. The average number of hours has increased by 73 percent between 1994 and 2010. Two and a half times as many people received attendance allowance in 2010 as in 1994. The aim of this study was to investigate if attendance allowance provides the prerequisites for people with personal assistance to engage in meaningful activities and participate in the labor market. Methods The report consists of a quantitative cross-sectional analysis based on data from the Swedish Social Insurance Agency as well as data from a questionnaire survey of a sample of people entitled to personal assistance (total of 15,515) conducted in 2010. The number of responses (10,200) corresponds to a response rate of 67 % which is very high considering the potential difficulties involved for this population. Results The results shed light on the extent to which personal assistance enables people to live normal lives. More men than women believe that attendance allowance is a prerequisite for their ability to work or study. Eight of ten clients reported that assistance contributed to the ability to have a meaningful employment. Nine of ten people, including small children, reported that assistance promoted opportunities for social contact and activities. Nevertheless, a relatively large percentage (ca 60%) of respondents expressed uneasiness about the future. Conclusions The results indicate that personal assistance offers valuable support that largely meets Sweden’s obligations pursuant to the UN Convention on the Rights of Persons with Disabilities. Personal assistance also creates better conditions for the fulfillment of Sweden’s national public health goals. Key message Personal assistance in Sweden enables people to live normal lives and is a prerequisite for work, studies and other meaningful activities among young people and adults with permanent disability.