In this part of my presentation I will talk about the personal assistance legislation in Sweden. I do not want to imply in any way that Sweden has a perfect policy. In formulating the model legislation text (available soon on this Website) I benefited from my experience in designing the STIL solution (Stockholm Cooperative for Independent Living), lobbying to turn our model into national legislation and defending the original version of the law against changes for the worse. First a short personal introduction to tell you how I got into this business.
Incidentally, my present talk is also available on the Institute’s Website at www.independentliving.org/docs7/ratzka200410a.html.
I grew up in Germany. In 1961, when I was 17, I became disabled. The next five years I spent in hospitals. I was not sick but I had nowhere else to go. There was no housing and no assistance with the activities of daily living. Wheelchair accessible apartment buildings were unknown at that time and my family did not have the means to build a barrier-free house. Before contracting polio, I had lived with my mother who could not work as an assistant. Besides, I would not have liked to depend on one and the same person, every day for the rest of my life – not even on my mother.
In 1966, at the age of 22, I was able to move from my hospital room in Munich to a student dormitory in Los Angeles, California for university studies – with power chair and ventilator, and without family or any contacts in the new country. Through a unique administrative solution Germany paid all my costs including my assistive devices and my personal assistance. Every month the German Consulate in Los Angeles sent me a check with which I hired and trained fellow students as personal assistants.
This financial arrangement revolutionized my life. I was not a patient but an ordinary student. I was no longer the object of professionals who decided over every aspect of my daily life. The people who helped me get up in the morning were not people in white coats who often would not even listen to me, but fellow students whom I hired. Now it was up to me and not the night shift, when I wanted to go to bed late. I was the boss and I was the only one who “took care of me.” For the first time I had the means of taking responsibility over my life as other people my age. This experience marked my personal development and later professional interests.
In 1973, I moved to Sweden to do field work for my doctoral dissertation. After completion of my degree I stayed in Sweden and did research on barrier-free housing and de-institutionalization. In the 1980s, I imported the Independent Living movement to Sweden and founded STIL, the Stockholm Cooperative for Independent Living, the first European personal assistance user cooperative. Our work served as model for the Swedish Personal Assistance Act of 1994.
In describing the legislation and its effects I will use myself as an illustration. I need personal assistance 18 hours a day, on average. My case worker at the local office of the National Social Insurance Fund and I arrived at this figure. A medical statement about cause and extent of my disability played a minor role - the law requires that the assessment takes a person’s whole life situation into account.
I am married, our daughter is 10 years old. My wife and I work. According to the law, my assistance services shall enable me to achieve the division of responsibilities in the family which is common in Swedish society. Thus, my personal assistants help me with shopping, cleaning, minor repair jobs around the house, car maintenance, and garden work – in brief, with everything that I would have done myself, if I had not been disabled.
My assistants enable me to work. One of the most important functions is to accompany me on trips. As head of the Independent Living Institute I often travel. Since my wife has her own work – she is an occupational therapist – we only travel together on vacations. And there too, I take an assistant along, since I want to have the same role within the family that I would have had without my disability. Money for the costs of the accompanying assistant’s airline tickets, hotel room, meals, entrance tickets, etc., is part of the monthly payment from the Social Insurance Fund. Thus, I do not have to apply, motivate and fight for such expenses every time I travel.
I have eight part-time assistants, including my wife, since we find it inconvenient to have assistants in the house at night. When she is not at home, I have to make arrangements to make sure I can get help, if I need something at night. Our goal is the same degree of independence from each other that other couples have.
Six assistants work according to a schedule, and the other two are reserves. Two are freelance musicians who supplement their income by working for me. Three assistants are from Latin America who study or get by with part-time jobs.
The employer of my assistants is the personal assistance user cooperative, STIL, which I started in the 1987. There are presently 240 members, among them children, people with learning disabilities, and older persons. The only thing in common is our need of personal assistance. According to our bylaws, only assistance users can be cooperative members, and only assistance users can serve on the board. The director and a large part of the cooperative’s office staff are disabled and often personal assistance users themselves. Instead of describing STIL’s organization and work I refer you to my friend Bente Skansgård from ULOBA in Norway which will be here tomorrow and talk about their cooperative, which copied much of STIL’s methods.
Under the Assistance Act, users receive monthly payments from the Social Insurance Fund. Each fall, the Swedish government determines the amount that we receive for the average assistance hour for the following year. For 2004 this flat rate amounts to USD 27. Thus, I have a monthly budget of 18 hours x 31 days x USD 27. With these funds I pay all direct and indirect labour costs of my assistants and my part of the cooperative’s administrative costs. The rest I can use for the travel costs of my accompanying assistants and similar expenses.
The money from the Social Insurance Fund is paid directly to me. Each month I have to show how many hours my assistants have worked for me. Every sixth month I have to account for the numbers of hours I have used during the period. For the unused hours the corresponding amount of money is paid back. Within the six month period I can spend or save hours as I find it necessary and do not need to use the same number of hours each day or week.
The payments from the Social Insurance are to cover all my assistance needs – not just a part. The amount of the payments is independent of income or property of the recipient or the recipient’s spouse, parents or other family members.
With the funds I can buy services from any provider, for example, the City of Stockholm that runs community based services, private for-profit companies or cooperatives such as STIL. In addition, I can employ my assistants myself. All these solutions are permitted to promote freedom of choice and competition. Regardless of service provider I receive the same amount from the Social Insurance.
Eligibility for payments under the Assistance Act requires assistance needs of a minimum of 20 hours a week for such basic activities as personal hygiene, getting dressed or fed or, if applicable, for communicating, structuring one’s day or other cognitive and emotional support. Once the 20 hours of need per week for these most basic activities are established, additional assistance hours, if needed, can be granted for other activities such as assistance at work, with household chores, during leisure time or with the practical aspects of raising children.
The law does not set an upper limit for the number of hours. I know people with 27 assistance hours a day, since two assistants are needed during part of the day.
Eligibility under the Act is limited to people under 65 for state budgetary reasons. The reform would cost perhaps 20 times as much, if persons older than 65 were eligible. Those who already received payments before 65 continue to get them also after 65. But those who acquire their disability after their 65th birthday cannot.
Assistance users who are not eligible under the Assistance Act must get help
from the local government under the Social Assistance Act of 1972. Whether
assistance is provided in the form of cash benefits or services in kind is
left to the local government’s discretion. There is a considerable difference
in the resulting quality of life between the Assistance Act of 1994 and the
older 1972 legislation. For one, local governments need only support a “reasonable” quality
of life, whereas the Assistance Act of 1994 is to expressively maintain a “good” quality
of life, which translates into more assistance hours. Also, local governments
are not responsible for services or payments outside their geographical boundaries.
The funds of the National Insurance Fund, on the other hand, can be used outside
of Sweden. For example, I used my payments during my sabbatical year at the
University of Costa Rica.
Without direct payments for personal assistance my wife and I might not have married, since the poor quality of the municipality’s home help services would not have promoted a mutually supportive partnership based on equality, with space for both parts to develop independently from each other. Most likely, we would not have a child, since my wife would have been stuck with all the household and childcare work - and probably partly with me. With the municipality’s services I could not have my present job, that includes travel or work abroad without my wife.
In order to spare people a life in institutions it takes barrier-free housing and assistance services of sufficient quality and quantity. In Sweden, there are no residential institutions for persons with physical disabilities. Adults with learning disabilities either live by themselves or in group homes of about five persons per housing unit. Since 1978, building norms require barrier-free construction of apartment buildings of three or more floors. As a result, in Stockholm an estimated 10% of the total housing stock is barrier-free.
Sweden and Finland are two small countries with considerable economic problems caused by an aging population and dependence on a few vulnerable industries. According to recent World Bank statistics of Gross National Product adjusted for purchasing power, Finland ranks number 24 in the world before Sweden with rank 26. So, Finns are richer than Swedes per capita.
What are the costs of the Personal Assistance Act? A total of 12,000 persons with extensive needs of assistance with the activities of daily living receive direct payments for personal assistance from the Swedish Social Insurance Fund. On average, the fund pays for 94 assistance hours/week per person. At the present rate of €22 per hour and 94 hours a week the total costs amount to €1,290 million. Since the monies pay wages and since the use of the funds must be accounted for, it can easily be calculated that more than half of this sum go straight back into state coffers in the form of employers’ contributions to the Social Insurance Fund, income tax and sales tax. Much of the national Social Insurance Fund money replaces costs that the municipalities would have had under the previous legislation. In addition, the 12,000 assistance users together employ 40,000 assistants, many of whom would otherwise receive unemployment insurance or welfare payments. No cost-benefit analysis has been conducted, but I would not be surprised, if the Personal Assistance Act turned out to be one of the most cost-efficient policies ever.
The Swedish experience shows that a country does not need to be wealthy to enable citizens with extensive disabilities to live a rich, self-directed life in the community.