I grew up in Southern Germany where I contracted polio in 1961, at the age of 17. Within a couple of days I had to be put into an iron lung, since I was unable to breath. During the following three months I trained and built up my remaining breathing muscles until I managed breathing during the day without mechanical assistance. At night I had to sleep on a rocking bed. The following 5 years I spent in hospitals - not because I was sick but because I had nowhere else to go, no suitable housing, no assistance with the activities of daily living. Wheelchair accessible apartment houses were unknown at that time and my family did not have the means to build a barrier-free house for me. Before contracting polio, I had been living with my mother who would not have been physically able to work as my 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, Germany to a student dormitory in Los Angeles, California for university studies – with power chair and ventilator, without family or any contacts in the new country. At that time, I had learned to sleep with a chest shell, also called cuirass, which made traveling and moving to another country a lot easier.
Since 1983 I have used intermittent positive pressure ventilation through the nose at night – a solution in whose development I had been involved since 1979. The nasal mask is anchored in a dental piece for the upper teeth row. During the day, I use a simple plastic hose of 5 mm in diameter without mouthpiece; the ventilator is mounted under the seat of my wheelchair. These light-weight and simple solutions today not only replace the heavy machinery of my earlier years, they also allow me to work and travel and are better for my health.
Back to California and 1966. Through a unique administrative solution the German State 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. No longer was I 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 had picked. Now it was up to me and not the night shift, when I wanted to go to bed late. I was the boss and there was only I who “took care of me.” For the first time I had the means of taking responsibility over my life as other people of my age. This experience marked my personal development and later professional interests.
I 1973, I moved to Sweden in order to do field work for my doctoral dissertation. After completion of my university studies 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 the Stockholm Cooperative for Independent Living, the first European personal assistance user cooperative whose work served as model for the Swedish Personal Assistance Act of 1994 (LASS). In 1993, I founded the Independent Living Institute in Stockholm, a small not-for-profit which works for self-determination in social policy.
Sweden is no paradise for persons with disabilities. In all official statistical comparisons with the rest of the Swedish population disabled people are worse off in terms of education, work, income, housing conditions, leisure time opportunities, social contacts, participation on public life, starting a family of one’s own or psychological well-being.
I still cannot use regular city busses in Stockholm. An overwhelming majority of shops, restaurants, offices and other work places is not accessible to me. There are still hardly any people with disabilities in high positions in politics, administration, business, science, culture and the media.
That people with disabilities happen to be better off in Sweden than in many other countries is for us who live in Sweden of no comfort. The only relevant comparison is with the living conditions of our non-disabled brothers and sisters, neighbors and friends. According to this criterion, we are worse off in Sweden - and elsewhere.
The Swedish Personal Assistance Act of 1994
In my talk today I will focus on the personal assistance solution that has been developed in Sweden, the Personal Assistance Act of 1994. This piece of policy is not perfect, from the viewpoint of the users, but it has many features that promote self-determination and full citizenship of people with extensive disabilities. In describing the Assistance Act and its effects I will use myself as an illustration.
I need personal assistance 18 hours a day, on the average. This figure was established in a discussion with a case worker at the local office of the National Social Insurance Fund. An old medical statement attesting the cause and extent of my disability played a secondary role, since the law requires that the needs assessment has to take a person’s whole life situation into account. Incidentally, if I did not use a ventilator I probably would get one or two hours less a day.
I am married, our daughter is almost 10 years old. Both 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 house and car, and garden work – in brief, with everything that I would have done myself, if I had not been disabled.
With the help of my assistants I can work. One of their 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 we want as much as possible the same degree of independence within the family as other families have. I have a budget for the costs of accompanying assistants’ airline tickets, hotel room, meals, entrance tickets, etc. This budget 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.
At the moment I have eight part-time assistants working for me. My wife, incidentally, is one of them, since we did not want an assistant in the house at night. When she is out or on travel, 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 dependence or independence from each other that other couples have.
Six assistants work according to a schedule, the other two are reserves. Two are freelancing musicians who supplement their income by working for me. Three assistants are from Latin America who study or get by with part-time jobs.
In Sweden, there are no conscientious objectors, as in other countries, who do assistance work instead of military service. The payments from the Social Insurance Fund allow us to pay market salaries. Conscientious objectors are forced to work for almost nothing which damages the image of personal assistance as a profession and makes it difficult to recruit and pay capable people who meet us with respect.
The employer of my assistants is the personal assistance user cooperative, STIL, which I started in the 1980’s. We 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, 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. The members delegate most administrative work to the cooperative’s staff, such as paying assistants’ wages, withholding and reporting taxes to the tax authorities, assisting members in labor disputes and defending members’ rights against the Social Insurance Fund with legal means, if necessary. The Cooperative, however, does not help in the recruitment of personal assistants nor do our assistants work for more than one member. Each member must find, train, motivate and supervise his or her own assistants. Only in this way, I believe, each of us can achieve maximum self-determination. If we were to share assistants, we would need to negotiate with each other, make compromises and concessions. In fact, the cooperative’s staff would need to schedule and dispatch assistants who would go from one member to the next. In this way, the individual member would lose the ability to custom design a solution for his or her needs and preferences – it would not be “personal” assistance anymore.
The cooperative supports members, especially new ones, in their management tasks through courses and peer support, i.e. mutual learning from people in the same situation.
Under the Act of 1994, assistance users receive monthly payments from the Social Insurance Fund. Each December, the Swedish government determines the amount that users 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 hrs x 31 days x USD 27. With these funds I pay all direct and indirect labor 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 up each day or week the same number of hours.
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 the recipient’s or the recipient’s spouse’s, parents’ or other family members’ income or property.
With the funds I can buy assistance services from any assistance service provider, for example, the City of Stockholm that runs community based services, private for-profit companies or other cooperatives that modeled themselves after STIL. In addition, I can become employer and hire my own assistants. Regardless of the service provider’s identity I receive the same amounts from the Social Insurance Fund. All these solutions and their combinations are permitted in order to promote diversity, freedom of choice and competition.
Eligibility for payments under the Assistance Act requires assistance needs of a minimum of 20 hrs 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 hrs 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.
There is no upper limit for the total number of hours stipulated by the law. I know of colleagues with 27 assistance hours a day, since two assistants are needed during part of the day.
The recipients’ age is limited to 65 years, there is no minimum age. The age limit was imposed for state budgetary reasons, since the reform would cost perhaps 20 times as much, if persons older than 65 were eligible. Those who became eligible for payments before 65 continue to receive them also after 65, but those who acquire their disability after the 65th birthday cannot join this exclusive club.
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, are exportable. 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 local government’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 now, since my wife would have been stuck with all work with household and child - and probably partly with me. With the local government’s services I could not have my present job where I travel or work abroad without my wife.
Which conclusions can we draw?
In order to spare people a life in exile in an institution 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. Since 1978, Swedish building norms require barrier-free construction of apartment buildings of three or more floors in height. All apartment units on all floors must be accessible from sidewalk to apartment via large elevators and hallways without steps or thresholds of more than 3 cm in height. Bathrooms and kitchens must have certain minimum dimensions. As a result, in Stockholm an estimated 10% of the total housing stock is barrier-free.
Adults with learning disabilities either live by themselves or in group homes of about five persons per housing unit plus staff. The 1994 Reform legally entitles individuals to live in the community – although this law is sometimes neglected by local governments which are responsible for its implementation.
In Sweden today, there is hardly anybody who would want the classical institutions to return. For one, Sweden in contrast to many other countries I know, does not have a welfare “industry” - private non-governmental organizations with a powerful lobby and close ties with the government. Often, such organizations have run institutions for many decades. Their organizational structure allows only very gradual changes. It is to their economic benefit to depict people with extensive disabilities, in their public relations work, as hopeless, helpless beings incapable of living in self-determination in the community as ordinary citizens.
Sweden is a small country with considerable economic problems that are caused by a rapidly aging population and the country’s dependence on a few vulnerable industries. According to recent OECD (Organization for Economic Cooperation and Development) statistics of GNP (Gross National Product) adjusted for purchasing power, Japan ranks number 13 before Sweden with rank 15 in the world. Thus, Japan is wealthier than Sweden, on a per capita basis.
Despite its economic problems, Sweden has invested in community based solutions rather than isolating people in institutions. Let’s look at the figures:
12,000 persons with extensive needs of assistance with the activities of daily living – in a total population of 9 million people – receive the personal assistance allowance from the Swedish Social Insurance Fund. On an average the Fund pays for 94 assistance hours/week per person. At the present rate of USD 27 per hour and 94 hours a week the total costs amount to USD 1.6 billion. Since the monies pay wages and since the use of the funds must be accounted for, it can easily be calculated that over 50% of this sum goes straight back into state coffers in the form of employers’ contributions to the Social Insurance Fund, Income Tax and Sales Tax. A cost of less than USD 800 million remains. Since much of the Social Insurance Fund money replaces costs that the local governments would have had to pay under the previous legislation, the net costs of the Personal Assistance Act to the Swedish taxpayer amount to considerably less than USD 800 million.
In order to reduce the need for institutions we also need more barrier-free housing in the community. Does it cost money? In Sweden, the additional costs of building barrier-free apartment houses has been estimated at less than 1% of total costs of new construction. The extra costs are due to the installation of elevators and to more spacious kitchens and bathrooms - which benefit everybody.
The Swedish experience shows that a country does not need to be wealthy to enable citizens with extensive disabilities to live a self-directed life in the community. Since Japan is richer than Sweden, on a per capita basis, what is the reason why so many Japanese with extensive disabilities have to live limited lives in institutions?
Over the years, I have met many people with disabilities in different countries and listened to their stories. It is clear to me that the quality of life of disabled citizens is only partly explained by a country’s total economic resources. At least as important is how these resources are spent. A country’s disability policy reflects the way society looks upon us. The old view of disability is to see us as medical cases to be isolated in hospital-like institutions and to be protected from the rest of society. This view we call the medical model of disability.
More and more disabled people all over the world demand a radically new way of looking at disability. We call it the citizenship model, the view that as citizens we have the right to live in mainstream society, to grow up within our families, to go to neighborhood schools, to use the same public transportation as our non-disabled neighbors, to have the same options in education and work as our non-disabled brothers and sisters, to have families of our own – in short, to take our rightful place within family and society with all the duties and rights that full citizenship entails.
Obviously, today, nowhere, neither in Japan or Sweden nor anywhere else, disabled people enjoy the same opportunities. Not because of the nature of our disabilities, but because of the way society has been designed. Since we have not been considered to be full citizens in our own countries, we do not have housing facilities, educational institutions, transportation systems, work places, etc. that are designed for all – including persons with disabilities.
The first step we need to take is to learn to look at ourselves as profoundly ordinary people. Yes, disabled people – even ventilator users - are profoundly ordinary people, with the same need of feeling as part of the community, with the same need of recognition, respect and love. You and I need to constantly remind ourselves that we are worthy of a good life, that it cannot be our task in life to save money for the majority population by dying young or by surviving isolated in institutions from where we watch on TV how other people live their lives.
Only by seeing ourselves as ordinary and not as special people, we can demand a life as ordinary citizens in mainstream society and not as special people in special, isolated solutions.