by Susanne Berg, Independent Living Institute
Let me start by thanking you all for inviting me here today.
During the last two decades of my life I have had assistance with almost all of the everyday activities “common man” does without thinking. I have spent months in hospital and rehabilitation units. I have lived in a flat connected to a service central allowing me some modicum of privacy and integrity. I have had the doubtful privilege of meeting the fifty or so personal of the “night patrol” taking turns to visit me. And since 1994 I have had personal assistance through direct payments.
Today I have my assistance administered through the Stockholm Independent Living Cooperative, STIL. That is, they take care of the paper work; I do the rest. Personal assistance has enabled me to live a full and very active life. I work – at the moment with a project doing internet radio on disability issues – and study part-time on a distance programme at Leeds University. My employment is with the Independent Living Institute, a small but sharp unit where we spread information and design projects targeted at improving the lives of disabled people.
I am going to describe the background and development of the legislation that confers us with the right to personal assistance through direct payments. In doing so, I will not pretend to be objective. That is impossible for a person, who lives through the right to personal assistance, and exists in the shadow of the threat to have it taken away. Because this is what personal assistance means to me; the difference between existing on conditions decided by others, and shaping a life after your own personal capacities and choices. Bare existence or exalting life.
Background and services prior to personal assistance
I was born on the fourth of January 1959. The year the Swedish government started to subsidise building of specially adapted flats for persons with mobility impairments. Housing and services – these are the two core issues for those who long to escape the imprisonment of institutions or create a life of their own beyond the family borders. Dedicated adapted flats had begun to be built in 1956 in several municipalities in Sweden. (1)
From the second half of the 1950’s and onward more than 60,000 dwellings per year were built in my country. During the years 1965-1975 “a million new flats” were built in what is known as the “million programme”. Maybe you have heard that Sweden had accessibility requirements in the building code as early as 1966. It is true, but these did only require accessibility to the common areas of housing. No demands were made on accessibility in the flats, the actual living areas. First in 1977 accessibility was required in the flats themselves; and lifts in houses of three stories and more.
So some one and a half million dwellings were built without vital accessibility demands making them unfit for use by persons with mobility impairments. If usable flats were built at all during these years they were probably specially adapted flats or flats in what was to be known as FOKUS-schemes, cluster housing, housing with services. For persons with intellectual impairments group dwellings much later became the solution.
The huge institutions in Sweden were people lived their lives, died and got buried were mainly a “privilege” for persons with intellectual and psychiatric impairments. These enormous entities were characterised by dehumanising views. They were asylums with care of poorer and degrading quality. (2) For persons with mobility or visual impairments the institutions were vocational schools. To these children were sent to get schooling and learn a craft. Up until 1963 the municipalities in Sweden did not need to cater for pupils with mobility impairments; and a teacher’s word was enough to tear a child from its family, sending it far away to a special school – a special place.
For someone with a more extensive impairment, needing practical help with everyday living activities, leaving such a school meant either going back home to be taken care of in the family or entering an old people’s home or geriatric ward. The question of services was high up on the agenda of disability organisations. In the discussions with the municipalities and county councils the established disability organisations made the connection between the lack of accessible housing and services. They advocated for “family hostels with services”.
During the 50’s the media in Sweden lifted issues of maltreatment and abuse in institutions. Both institutions for persons with intellectual impairments as well as the vocational “schools” and the solution of geriatric wards were fronted in the newspaper, radio and television.
At this time disabled people had started to force their way out of institutions. The fact that there were disabled people actively participating in the labour force, and the rising costs for institutions, forced those in power to plan for our re-integration into society. The access to educational choices, outside the traditional “handicap-trades” taught at the institution, was probably a key element as it provided individuals with personal care needs with competitive work skills. Another vital fact was of course the government subsidy for home care services enacted in 1964; which enabled a strong development of such services. (3)
The need of personal in home services were pushed forth and the initiative of the FOKUS Society and Lions resulted in the first Swedish telethon, 1965. The fundraising campaign, lead by the media personality of that time, Lennart Hyland, resulted in 13 million Swedish kronor. (Lions a) (4) The campaign with its symbol the Red Feather was a huge success; and thus is forever branded into the memory of the viewers connected to the building of “handicap housing”.
Cluster housing under the name of Fokus /…/ [is] the best known Swedish effort for keeping people with extensive need of personal assistance out of institutions. /../ The common pattern consists of 10-15 special apartments dispersed throughout one large apartment complex /…/ The units are connected via intercom to a staff on duty 24-hours a day. In the original concept the apartments were mainly intended as a half-way house solution. (5)
In 1973 the local municipalities were charged with a legal responsibility of providing this type of housing with service. “Cluster housing is no longer referred to as Fokus but as ’boendeservice’ which might be translated as ’housing with service’.” (6)
In 1982 I fell off a horse and landed in a wheelchair. I was twenty-three years old, living on my own – an “independent” adult. From the moment my head hit the ground, crushing the fifth cervical vertebrae creating a complete lesion, I was incapacitated. In the words of the parliament committee of disability’s report: “One has sometimes described the dominant conception about persons with impairments as an idea about “the eternal childhood”. They are perceived as children; dependent on the help and support of others and therefore incapable of self-determination and an independent life.” (7)
In-home-care services, as provided by the municipalities in Sweden in those days, had many similarities with the services provided in institutions. I would claim that they are different levels in the same dantesque inferno. Don’t mistake me, I would rather inhabit any “housing-with-services-life” than be shut in inside a special hospital, vocational school or any other asylum. I spent seven months in emergency care and rehab. Been there, done that, have the T-shirt.
What I mean is that the institutional mechanisms work in similar ways. The municipal home care services are designed to produce a specific quantity services with a specified content. The assessed hours or activities individual users of the services are given are not so much a right to self-determination and integrity, as they are working-orders to the municipal administrative unit.
The collective character of home-care-services makes it impossible to satisfy demands of self-determination and integrity from individual users. Over and over again, I have seen and experienced how attempts to increase influence and quality of services, have failed. The wishes of a group of staff to organise their tasks will always mean that the individual, who happen to be one of these tasks, have to subordinate her life to the work schedule.
The parliamentary committee researching the situation of disabled people at the end of the 80’s found that professionalism was one of the obstacles to disabled people’s influence. Professionals have by the force of their knowledge and professional status priority to interpretation of disabled people’s needs. If they also control the necessary resources to satisfy those needs, there is very little room for self-determination. Another obstacle identified was the organisation of services:
The impotence and the powerlessness our interviewees express carries all the distinguishing features we can expect in such a situation; perfunctory delimitations of tasks, an organisation of work built on the interchangeability of staff, complaints met with references to regulations, difficulties to know who is deciding and to whom you shall complain. (8)
Though the committee’s status report treated professionalism and organisation of service as two separate obstacles they really have to be seen as two sides of the same coin. If professionalism entails power or partial power over the regulations of the profession; that surely includes power over the organisation.
What collectivism and professionalism created were integrated residential units with services. But they failed to shape this in a way that gave disabled people independence. The services were exclusively connected to the apartments; while services in the work situation, in school or during leisure were organised separately.
When I was discharged from rehab I was elated. I felt that finally I could go on with my life. And to some extent I did. I had the privilege of being able to close the door and be by myself. I had my own furniture and curtains. What I didn’t have was control over my life; and of course the possibility of leaving my apartment and still being able to get assistance with the small things in life – as for example going to the toilet.
STIL and the legislative right to personal assistance
Even though “housing with services” was a step out of the institutions it did not provide the control and choice over personal assistance that created independent living conditions; at least not according to the independent living group in Stockholm. Advocating for a personal assistance scheme, which did not link housing and services and provided full choice to the “consumers” through direct payment, they successfully negotiated a deal with the city. Thus they received the funds the city otherwise would spend on “ordinary” services, enabling them to do the “staffing, scheduling, training, hiring, and firing” themselves. This was how personal assistance and direct payment was provided before the legislation of 1994 – through contract between individuals and municipalities.
The independent living model of personal assistance did not sit easily in the politics of the late 1980’s. It is interesting to note that the resistance to STIL came from sources like the political left and the unions. The left viewed the project as part of a privatisation wave, digging holes into the welfare system. The unions
known for their reluctance to support de-institutionalization fearing that they cannot protect their members’ interest outside /…/ [they] could easily be exploited, if employed by individual consumers. (9)
One of the most persistent arguments was also that the project was elitist; and that not many disabled people can manage their own assistance. This argument is echoing the attitude that disabled people are dependent and therefore incompetent to make choices regarding their lives; and since we are not competent to choose what is best for us we must be dependent.
It was evident that power had a lot to do with upholding the former system. The large stakeholders talking against the individualised STIL-model had vested interests in keeping the services in their existing form. The left had a political interest in keeping the collective system of state-owned services as it fitted their ideal of welfare organisation. The unions had an interest in organising the work for their members in the way best suited for them; full time employment, weekdays preferably between nine and five. Power was the issue. And the hypersensitivity regarding the empowerment of disabled people surfaced in the negotiations preceding the STIL-project.
The Stockholm Independent Living Cooperative, STIL started their pilot project in 1987. The solution was made permanent two years later when STIL signed agreements with seven municipalities in the Stockholm area. This was not an easy win. In the municipality of the City of Stockholm (the biggest municipality and probably the decisive one) the agreement went through in the political committee for social welfare with a majority of one vote.
One year before the pilot project persons with intellectual impairments had been given the legal right to group dwellings. This was of course a huge improvement from the asylums. However, STIL had from the start members belonging to this group.
In 1994 personal assistance became a legal right in Sweden. This was not an easy struggle either. It is my personal belief that the existence of a liberal government during that time is a decisive factor. Sweden has been ruled by government with major social democratic influence since 1930’s. The exception is two periods of right wing/liberal rule; the latter during the years 1991-1994. However, political negotiations in the Swedish parliament are done prior to plenary sessions. The acts were voted through unanimously.
The support and service act, LSS enacted in 1994 (10) provides a defined group of disabled people with explicit rights; among them the right to personal assistance or funding to enable purchase of such assistance. To qualify for personal assistance through LSS you must need assistance in:
demanding or in different respects complicated situations, as a rule of very personal character. Decisive should be that the individual needs personal help to take care of his hygiene, to get dressed and undressed, to partake of meals or to communicate with others. (11)
Individuals, who have these qualifying needs, can then apply and receive additional assistance hours for needs connected to every form of everyday activity. LSS provides assistance according to the level the individual deems is suitable for him/her to live.
The personal assistance needed is assessed in a specified amount of hours; not activities or levels. These hours are then funded with a specified amount of money, calculated per hour and supposed to cover all the costs relating to assistance: salaries, social security fees, administration, assistants’ cost when accompanying the assistance user in leisure activities or on travels or else, education for assistants, etc., etc.
The assessment takes into account the need for personal assistance in all activities concerned with daily life. It has no boundaries limiting it to particular chores or times; the only limiting is concerning activities where personal assistance is not granted for assistance needs during school hours, occupational day-care services for persons with intellectual impairments, time in hospital or other state-run institutions and group dwellings. The reason for this is that these types of services should have adequate staff to cover the assistance needs for the participants in them. Even in these cases, however, special personal reasons are the basis for an exception and assistance granted.
The municipal responsibility forms the background to the reform. The individual can choose whether he/she wants to buy hours from personal assistance entrepreneurs, arrange them through a cooperative, become a private employer or simply demand this type of services from the municipal welfare administration. Whichever way the user chooses, the municipality has the final responsibility; as it also has to provide personal assistance in emergency situations. All services received through the LSS are provided free of charge and without means-testing. The assessment is done from the individual’s needs, depending both on assistance-needs as well as life style.
Supplementing LSS is LASS, the support and finance act which finances personal assistance for a group within the group, receiving personal assistance via LSS. For those individuals who have “qualifying” needs 20 hours or more per week, this act shifts the funding responsibility from the municipality to the social security system. This means that individuals with costly service needs have these covered at the national level and do not have to compete with political priorities at the local level. The payment provided with support of either act is, as stated above, based on a fixed hourly sum.
The aim of the acts was inclusion of disabled persons as well as providing services for parents with disabled children. The ability to have equality in family life as well as being able to take up paid employment is specifically mentioned:
persons with impairments or families with an impaired child shall be able to live as normal a life as possible. Both parents shall /…/ be able to remain gainfully employed /…/ keep their friends and cultivate interests outside the home. The ambition shall be that persons with impairments – like other citizens – shall be provided with possibility of achieving a good education, have gainful employment, have a safe and dignified accommodation, participate in different cultural and leisure activities. (12)
Investigating the 1994 reform we can see several elements providing disabled people with extended possibilities of living independently: It contains explicit rights to personal assistance (through direct payment). The care assessment in it shall be done on the basis of people’s needs and shall cover needs connected with all activities in the applicant’s life. There are no fees connected to it; neither are the services means-tested. The municipality has a fixed basic responsibility to step in, in case of temporarily extended assistance needs, assistant’s illness or other emergencies. They are also responsible for costs outside the ordinary direct payment budget received, if such for some reason should occur. The direct payment is based on a fixed calculated sum covering all expenses connected with the assistance; including administration and indirect costs for assistants travel cost, food, tickets etc., etc.
Socialstyrelsen (national board of health and welfare) investigated the results of the reform and concluded that positive effects so fare could be seen in connection to the right to personal assistance. Several surveys confirmed that personal assistance has had a positive effect for many users. SoS also concluded that regulation and administrative routines have had to change to clarify issues of responsibility, better the application and control the rising costs. (13)
The numbers of the reform
Costs due to the legal reform of personal assistance are dependent on three factors: the number of recipients, number of granted assistance hours and the regulated hourly sum. At the end of 2000, seven years after the enactment close to nine thousand persons received assistance through the national social security system (those with close assistance needs exceeding 20 hours per week). The sum is preliminary since retroactive decisions (due to court cases) are not included. The cost for municipality funded assistance is not possible to calculate.
The disability committee estimated the amount of persons to be around eleven thousand five hundred after a ten year period. This was the time estimated to complete de-institutionalisation. The national social insurance board predicts that the number will increase from the 2000 sum. So far persons with psychiatric impairments have had difficulties being granted assistance. (14)
The estimated average number of hours per week has increased from 65,9 in the first year of 1994 to 85,3 in 2000. (15) This exceeds the estimated average in the proposal for the reform (which was forty hours per week). The national social insurance board means that this is due to wrong estimates at the time. The estimated sum was calculated after the amount of home care services received and neglected to take non-covered needs as well as needs fulfilled by help from relatives and friends, into account. Another possible explanation is changed behaviour in health care facilities enabling more tasks to be done at home with assistance and thus enabling persons with more complex assistance needs to live at home. (16)
The regulated sum for 2003 is set at 198 SEK per hour. This must be viewed as highly cost-effective when compared to municipality based services. In the City of Stockholm a system for customer choice was enacted in the home help services last year. This makes it possible for the recipient to choose between companies which have an agreement with the City. The companies have been selected after a procedure of public tender. The costs of this system, as opposed to the hourly assessed LSS/LASS assistance, are mostly based on levels (some 17 levels with average hours calculated – the absolute majority of costs exceeding the assistance sum when compared at average level). Proposal for the fixed hourly sum in this system is from 200 SEK during office hours to 236 SEK per hour during weekends. (17)
It is worth noting that even the “cheapest” hour in this system exceeds the average fixed sum of the assistance allowance (which covers hours around the clock all days). Personal assistance through direct payment to the users is thus a much cheaper service as well as a service made available when people need it; not when the “office has telephone hours”. The surveys also clearly show that the quality of services is way better than in the old system.
Most assistance users still prefer to receive their assistance from the municipalities. A survey made by the national social insurance board estimated that 68% of the recipients chose the municipality as service provider. Fourteen percent chose a cooperative, fourteen percent a private organiser and three percent chose to become employers themselves. (18) The group choosing the municipal alternative, though large, is decreasing.
The amount of persons still choosing to use their granted direct payment to buy hours via the municipalities should not be surprising. The reform is still very new and during the first years there were comparatively few decisions made. Even though the record show some four thousand decisions from 1994, this is based on the date of application not the decision date. After finally getting a decision it also takes some time for an individual to find a suitable administrator, advertise for staff, etc.
There is also the personal inertia, the unwillingness to change a known system for the unknown, untried one. The unpaid labour of “hiring and firing” is no small obstacle for the individual; especially if viewed against the utopian dream of having such done with quality by someone else. I am for example one of those for whom the municipality’s legislated duty to provide assistance with quality, for a long time made me stubbornly stick to the letter of the law; claiming their obligation to do just this. However, I can safely say that it does not work. If I, despite my verbal eloquence, my almost self-destructive will to fight authority, my legal knowledge and my peer support group, could not get it to work satisfactory I sincerely doubt that anyone can; at least in the present time frame.
If we view the character of the group abandoning the municipality for another administrator it is evident, that quality criteria is the reason behind the choice. During the first five years the fastest growing group of those who abandoned the municipality for another administrator belonged to persons with intellectual impairments and persons with permanent brain injuries acquired in adulthood. (19) It is interesting to note that the groups, commonly viewed as having most difficulties in handling the administrative duties of individual users, are those abandoning the municipal administration. My personal view is that the group will increase even more. Freedom is an acquired taste. I personally cannot understand why I persisted to fight for mere influence over my life under municipal care for so long; when all I needed was to take control over my assistance and thereby my life.
Now what type of organisation or mixture of organisations you, as a user will choose, I think depends on the surrounding situation. Whether or not you live alone, if you have relatives close by or friends that can provide the security you need. What type of person you are. There exist no right or wrong in personal choices like these. But there does exist empowerment or disempowerment. Whether or not the user can take his funding and go somewhere else, is for me the absolute essence of personal assistance. After all most of us considers computer software a free market, in spite of the percentages using Microsoft products. And the threat of Linux is enough to keep the quality up. I strongly suspect it will be the same with assistance. When enough people leave the municipalities their quality will increase. After all there is nothing like a little healthy competition. If the municipalities, companies and other institutions really are convinced that they provide the best service available – they should have nothing to fear. If the services are so good, our freedom of choice will only benefit their system.
Conclusion and personal thoughts
For me true citizenship is that which allows you to be a part of society’s development; that which enables you to participate in the moulding of our joint future. Democracy from this perspective becomes something much more than the obligation to cast your vote with regular intervals. It is a wide responsibility to speak out and dig in; striving to make things better for all. In fact, I strongly suspect it is the only way to make sure that you will be treated as an equal.
While, welfare and individual support as a solution to individual needs, is a measure of a fair as well as an affluent society, welfare can also be provided in ways that are more or less oppressive; more or less liberating. The prejudice about disable people as weak, incompetent and deserving no more than being taken care of simply is not true.
We, human beings, are as weak or strong as we are allowed to be. If we do not create services that enable people to live full lives we are perpetuating these stereotyped prejudices. The message to the public at large is that: “Disabled people are weak. They need to be taken care of. They are worth less.” The message to the individual with disability is that: “There is no point to get a good education or train to become good at a job because nobody is going to notice it anyway. You are without chance. And without justice.
For me the acid test of any reform is whether or not it grants the recipients the right to strive for a career on the labour market and if it enables you to form a family. The national social insurance system is really not that different from any other insurance you could have. It should protect you from the possibilities of accidents and illness. It should compensate.
There exist many different views on the merits or flaws of LSS/LASS and the right to personal assistance in Sweden. However, there is one thing that you cannot do anything but agree on – it has created a huge improvement for those of us that need some help in getting up in the mornings. For me personally it has given me a life which I would not swap for anybody else’s disabled or non-disabled.
(2) Grunewald, Karl & Olsson, Thomas, (1997) Utan talan: historia i bil från omsorgerna om utvecklingsstörda, Liber: Stockholm (Without voices: history in pictures from the care of persons with intellectual impairments)
(5) Ratzka, A.(1986) Independent Living and Attendant Care in Sweden: a consumer perspective, Independent Living Institute: Stockholm (http://www.independentliving.org/docs/wrfmono.pdf) Accessed on 2002.01.07. p.18
(9) Ratzka, A.(1986) Independent Living and Attendant Care in Sweden: a consumer perspective, Independent Living Institute: Stockholm (http://www.independentliving.org/docs/wrfmono.pdf) Accessed on 2002.01.07. p.17
(11) Proposition 1992/93:159 Stöd och service till vissa funktionshindrade Allmänna förlaget: Stockholm (Government proposal 1992/93:159, Support and service to persons with certain functional impairments ) p. 63.
(12) Ibid. p. 43.
(13) Socialstyrelsen (national board of health and welfare) (1997), Handikappreformen: slutrapport, 1997:4 (Disability reform: final report, summary), Socialstyrelsen: Stockholm (http://www.sos.se/sos/publ/referat/fu9704.htm) Accessed on 2002.02.07
(14) Riksförsäkringsverket (national social insurance board) (2001) Resurser för att leva som andra - en analys av kostnadsutvecklingen inom assistansersättningen (resources to live like others – an analysis of the development of costs connected with the assistance allowance) RFV analyserar 2001:3, Riksförsäkringsverket: Stockholm (http://www.rfv.se/publikationer/pdf/ana0103.pdf) Accessed on 2003.05.03. p.10
(17) Stadsledningskontoret i Stockholm, finansavdelningen ( head administrative unit, city of Stockholm, department of finance) (2001) basic data for decision making (http://www.stockholm.se/files/14700-14799/file_14741.pdf) Accessed on 2003.05.03.
(18) Riksförsäkringsverket (national social insurance board) (2001) Resurser för att leva som andra - en analys av kostnadsutvecklingen inom assistansersättningen (resources to live like others – an analysis of the development of costs connected with the assistance allowance) RFV analyserar 2001:3, Riksförsäkringsverket: Stockholm (http://www.rfv.se/publikationer/pdf/ana0103.pdf) Accessed on 2003.05.03. p.35
(19) Riksförsäkringsverket (national social insurance board) (1999) Statlig assistansersättning – de fem första åren (national assistance allowance – the first five years) RFV redovissar 1999:11. Riksförsäkringsverket: Stockholm (http://www.rfv.se/publikationer/pdf/red9911.pdf) Accessed on 2003.05.03. p.20