Personal Assistance - a revolution for people with disabilities - Keynote

Keynote at the 7th International Conference on Social Work in Health and Mental Health, University of Southern California, Los Angeles, June 26, 2013

By Hon Dr Bengt Westerberg, former Swedish Minister of Social Affairs, chairperson of the Board, Swedish Institute for Disability Research

I have been asked to say something about Swedish disability policy. I was Minister for Social Affairs of the Swedish government between 1991 and 1994, responsible for disability policy among other things. During that time, in 1993, we carried through the biggest disability reform ever in our country.[1]

Since 2000 I have been chairperson of the Board of the Swedish Institute for Disability Research, a collaboration between three Swedish universities, and have followed the development from that perspective.[2]

For several decades Swedish disability policy has been greatly influenced by the same ideas that underpinned the UN Convention. Thus, these ideas inspired our policy even before the Convention was adopted.

History

I would like to discuss the major reform of 1993, but before that, a few words about our disability policy history.

It has been far from glorious. For too long, persons with disabilities — particularly those with intellectual disabilities who used to be referred to as mentally retarded — were regarded as a major problem. During the 19th and the first part of the 20th centuries Swedish disability policy was characterized by a racist approach. The Nordic race was regarded as particularly clean and valuable. Political and scientific authorities during the beginning of the 20th century warned not only against miscegenation, but also against reproduction in our own population among people with bad genes. Those with intellectual disabilities were sorted into this group. They were stopped from having children by incarceration or sterilization.

In 1934 the Swedish Parliament passed a law that included sterilization, originally aimed at the intellectually disabled but later extended and used against groups such as the Romani and Travellers. Over three decades, more than 60,000 people were sterilized. The law remained on the books until 1975.

Despite the sterilization policy, for the first half of the 20th century institutional incarceration was seen as the most humane option for those with intellectual disabilities, and also for others with different kinds of impairments. At the end of the 1960’s there were more than 200 institutions in Sweden with about 15,000 inmates, one third of them children younger than 7.

The outlook gradually changed. From the 1950’s on, criticism grew against the institutions. In 1968 a law was passed guaranteeing partial support to intellectually disabled individuals living outside institutions. And with another law, passed in 1985, a more systematic phaseout of the institutions began.

This law prompted the development of housing and services for the intellectually disabled in open society, and calls were made for similar legislation for those with other types of impairments. In 1988 the Swedish government appointed a commission to investigate this issue.

Relational perspective

Criticism against the institutions was largely related to a new relational perspective on disabilities. It is the functional limitations of the individual in interaction with the surrounding society that create disabilities. Compensatory measures to reduce or eliminate disabilities must involve both the individual and the environment.

This view differed from the old, medical perspective, which often focused on the individual’s functional impairment.

In international discussion, some will even claim that all disabilities can be attributed to the environment. This standpoint holds that functional abilities vary among individuals naturally. Disability arises because society is not adapted to that variation.

I would claim, however, and I dare say this is the prevailing understanding in Sweden and the basis for our national disability policy, that there are individuals with such impairments that they need individual support even in the most impairment-friendly environments.

Accessibility

But, of course, much can be achieved by making society more accessible. In Sweden we are highly ambitious about increasing accessibility in many ways. The Swedish Government has adopted a 5-year strategy through 2016, with many concrete objectives.

• Physical accessibility is to be increased in premises used for education, care and culture; in the public transport system; in sports centers, etc. Requirements for accessibility in the Swedish Planning and Building Act have recently been tightened for new construction and renovation, as well as for existing premises and public spaces. Still, much remains to be done to achieve the stated objectives.
• the staffs of public agencies and of business companies are to be better prepared to understand disabilities and create solutions through increased accessibility.
• Information of varying kinds is to be made accessible for individuals with disabilities as well. The accessibility and efficacy of public web interfaces is to be increased. Radio and television are to be made accessible to more people, regardless of functional ability. Public libraries are to pay more attention to providing literature in forms accessible on equal terms to individuals with disabilities.
• Public support for sports is to be restructured to include persons with disabilities, currently often excluded from sports centers, clubs and activities.

The Swedish Agency for Disability Policy Coordination, Handisam, has been commissioned by the government to monitor and assess the development of accessibility. In a report published in mid-May of this year the agency officials reported that progress has been too slow and called for a new thrust if the goals of 2016 are to be met.

One of the goals is to increase employment for people with disabilities, which has actually decreased during the first decade of the century. A number of measures have been implemented in recent years or will be introduced in the coming years, most of them inspired by the ideas of supported employment. However, the effects so far are difficult to estimate.

Another goal of increased accessibility is to reduce the need for individual support. This has been explicitly expressed in many reports by public agencies in Sweden. Specific examples of where this might be realized spring easily to mind. For example, were public transport to improve its accessibility, the need for individual-based transport services for people with disabilities could diminish.

But increased accessibility brings an increased demand by people with disabilities for participation in society. Today, the disabled are often excluded from sports arenas and cultural institutions, for example, because these facilities are not physically accessible. Should this improve, more individuals with disabilities want to visit these premises, but physical accessibility is not always enough. They might need individual support to get there. And if we want to encourage those with disabilities to become more active in sports, many will need increased individual support.

I have not seen any study that explicitly analyzes how increased accessibility will affect the need for individual support, so my reflections are only speculations. Still, I think it is wise not to be too optimistic that increased accessibility will automatically reduce the need for individual support. The truth might even be the opposite, at least for those with significant impairments.

One proposal currently discussed in Sweden is to make inadequate accessibility grounds for discrimination under the Discrimination Act. The idea is that a lack of accessibility in any environment should be regarded as an act of discrimination against people with disabilities. This is already in effect in workplaces and universities. The government is hesitating because of the uncertainty regarding cost. A government agency has estimated that the costs in economic terms will considerably exceed revenues.

A key factor in the calculation is the value attached to increased accessibility. It is hard to fix a price. Many advocates of the proposal assert that accessibility is a human right that we must be prepared to invest in. Others see accessibility as an aspect of quality of life. What is needed is accessibility for everyone, regardless of functional ability. Accessibility means more customers, more visitors and a better society for all.

The Social Services Act

In a study by Statistics Sweden, a government agency, 25 % of all Swedes between 16 and 64 years old claim some kind of disability. Of course, they form a very heterogeneous group. Half of them regard their ability to work as reduced, and one fourth their ability as greatly reduced. The latter group consists of about 400,000 individuals. Half of them are unemployed and a majority of those qualify for social insurance benefits.

A number of these individuals, perhaps 100,000, get additional social assistance, mainly from the municipalities, based on the Social Services Act.

This is the most important social-services legislation in our country — everyone who lives in Sweden must be able to turn with confidence to the social services in their home municipality for assistance. You are entitled to that assistance if you are unable to service your own needs or have them serviced. Under the act each citizen is guaranteed a reasonable standard of living. People with functional disabilities qualify for services through this law.

They have long been entitled to different kinds of support. But until the beginning of the 1990s the services were developed by the service providers, mainly the municipalities, who mandated not only the scope of services but also implementation and staffing. The clients, lacking influence, had to grin and be grateful.

The Act Concerning Support and Service for Persons with Certain Functional Impairments (LSS)

To recap: In 1988, the government set up a commission to evaluate support given to persons with significant disabilities and to produce ideas for improvement.

In 1991, I became Minister for Social Affairs and shortly after that the commission presented one of its reports. In the spring of 1993, based on the commission’s report, I presented the bill on the Act Concerning Support and Service for Persons with Certain Functional Impairments, with a Swedish acronym of LSS, to the Swedish Parliament. On May 5 it was adopted and from January 1, 1994, implemented. We now have almost 20 years of experience for evaluation.

The LSS supplements the Social Services Act and aims to secure support for certain disabled people. Previously, as I mentioned, a similar act had guaranteed some services for the intellectually disabled. The LSS extended these guarantees to other groups with major and permanent physical or mental impairments that are clearly not due to normal aging, and which cause considerable difficulties in daily life and, consequently, imply extensive needs for support and service.

The goal of the act is as follows:

”The activities pursuant to this Act shall promote equality in living conditions and full participation in community life for those (with significant and permanent impairments). The objective is to make it possible for the individual in question to live as others do. … The activities concerned shall be based on respect for an individual’s right to self-determination and privacy.”

The services guaranteed in the LSS include for example companion service, support for domestic needs, arrangements for children and young people who need to live away from their parental home and similar residential arrangements for adults.

Individuals can appeal to an administrative court if not satisfied with decisions made by local authorities.

About half of the 100,000 people between 16 and 64 years old with disabilities who get social assistance from the municipality are targeted by the LSS. But the act also concerns those younger than 16 and older than 64 so the total number is approximately 70,000-80,000, or about 0.8 % of the Swedish population.

Personal assistance – the roots

The most important proposal in the new act was the right to personal assistance and therefore I will focus on that.

The roots of the personal assistance concept are actually here in Los Angeles and California. The person who launched the idea in Sweden is Adolf Ratzka.

Adolf was born and grew up in Bavaria in Germany. In 1961, when he was 17, he was afflicted by polio. Helped by private teachers, he gained his high school diploma from the hospital bed. His excellent grades won him an elite Bavarian scholarship, including accommodation. But no university in Germany would accept him.

He contacted some American universities with special programs for students with disabilities. One was the University of California here in Los Angeles. He was accepted. Financial support from the state of Bavaria paid for his studies, including the costs for hiring fellow students who assisted him with the activities of daily living.

The support he received from Bavaria was unique, made possible by brave decisions by visionary and non-bureaucratic individuals in his home state. The case was highlighted in several media, among them The New York Times and Der Spiegel. The movie director Werner Hertzog, later to become world-famous, with films such as Grizzly Man, made a documentary about Adolf.

Even before Adolf left for Los Angeles he had been in contact with Ed Roberts, who later founded the independent living movement in the United States. Some years later Adolf brought Ed’s ideas together with his own experiences to Sweden. He came to our country in 1973 to collect material for his doctoral dissertation. The project took longer than planned and he ultimately settled in our country.

The environment he encountered in Sweden was very different from the one he had left in Los Angeles. In Stockholm he could get more extensive public support, but Swedish-style support: the public authorities, as I mentioned, mandated the practical design. Beneficiaries had little power and were largely treated like passive objects of care. Community-based in-home support services for those living in the community were not available everywhere, so many persons with disabilities were still forced to live in institutions. For Adolf, his new life meant a disastrous loss of integrity and self-determination.

He later gave one example of the consequences of the Swedish model. Although recipients of the community-based services did not see any difference in going to the toilet at the home, in the workplace or school or while shopping downtown, the responsibility for supporting them with toileting was divided among four or five different institutions, each managing a different environment.

Personal assistance to Sweden

In December 1983, Ed Roberts spoke at a conference in Stockholm. Subsequently, a Swedish branch of independent living was founded — the Stockholm Cooperative for Independent Living (STIL).

Adolf Ratzka coined the terms “personal assistance” and “personal assistant”. They were quickly adopted into the public discourse in Sweden. He has later explained that the word “personal” does not refer principally to the fact, that the assistants help the service users with intimate moments, such as body hygiene, but rather to the political dimension of the word. ‘Personal’ stands for individualization and empowerment: the money shall follow the beneficiary, not the provider. Personal also means that the solution is not universal, not of the one-size-fits-all model designed by others, but individual and custom-made by the user for his or her unique individual needs, circumstances and priorities.

In 1986, I met Adolf Ratzka and his colleagues in STIL for the first time and was enthused by their ideas.

They managed to convince the local authorities in Stockholm County to let them run a pilot project. The funds the authorities had been ready to spend on community-based services for Adolf and the others in STIL were put at their disposal to be used as they desired. This allowed them to employ, train and supervise their own personal assistants and to decide with what, where, when and how their assistants should work. This project started on January 1, 1987.

At the time, I was still part of the parliamentary opposition. In a speech in parliament a few weeks later, I recounted my meeting with STIL members and expressed my vision that their project would provide a prototype for disability policy reform in Sweden.

Not everyone was as enthusiastic. Many even opposed the idea, among them representatives of the disability movement as well as professional social workers. Still, the idea was interesting enough for the government to ask the commission reviewing the disability policy to investigate. The commission shared my view and came up with a proposal to introduce personal assistance. That is how it became part of the 1993 disability reform.

I have not been actively involved in these issues since I left Government in 1994. The picture I will share with you now is based on contacts with relevant government agencies and representatives of disability organizations, and also on some evaluation and research reports. Unfortunately, most of the material is available only in Swedish.

Who qualifies?

Under the act, one of the challenges has been to decide who qualifies for personal assistance.

The idea is that persons with significant and permanent impairments, and who need help in situations of intimate nature, should have a decisive say in who provides the service. Those situations include help with hygiene, dressing and undressing, eating or communicating with others, or help that requires deep personal knowledge. If these criteria are met, assistance should also be given in other contexts where the person needs qualified services – for instance, to get out in the community, to study, to participate in normal activities or to obtain or maintain a job.

If the need for assistance in intimate situations exceeds 20 hours a week, the responsibility for funding the exceeding hours is transmitted from the municipality to the national state. The reason for that is that the costs shall be borne loyally by all the country’s taxpayers.

Establishing how much assistance is needed for such intimate situations has been a matter of debate. After discussion in the Swedish Social Insurance Agency, which administers the national funding, and based on the precedent set by a verdict of the Supreme Administrative Court in 2009, this has now been accurately defined. This process has contributed to a certain tightening of the criteria. In recent years, some individuals have even lost their personal assistance through reassessment.

This development has been heavily criticized by the disability movement, but lawmakers appear to approve of the implementation. I am not aware of any initiative to change the act, which would be necessary were the politicians dissatisfied with the way in which it is being interpreted and wanted to change the outcome.

Costs and benefits

The number of people in Sweden receiving personal assistance is currently almost 20,000, which is 0.2 % of the population. On average they receive personal assistance for about 115 of the week’s 168 hours. Some beneficiaries have two assistants simultaneously, at times, contributing to the high average.

The cost for this year is estimated at about 5 billion USD. Together with other benefits and social services provided to these individuals it adds up to about 1 % of the Swedish gross national product and 2 % of public expenditures. This can be regarded a measure of the priority given to normalizing the living conditions of the individuals served by the act.

The reform is more expensive than the original estimate. The unexpected cost increase has two causes: the number of beneficiaries is somewhat higher than forecast, but mainly, the actual hours needed were grossly underestimated.

The forecast of 1993 was based on the services then provided by municipalities. There are no indications that the increased number of hours reflects decreased accessibility in society. On the contrary, it has improved. It is rather that personal assistance has made it possible for beneficiaries to do more things. This increases demand and need, supporting my point that better accessibility might raise demand for individual support.

Another factor that has contributed to more hours is the changed perspective. Before the new act, services were often limited by budget restrictions, especially at the local level. The intention of the act is that individuals with disabilities should get the help needed to lead a normal life. As I mentioned, they also have the right to appeal to an administrative court if unsatisfied. This has contributed to the entitlement of more hours.

The cost increase has troubled many. A number of investigations since the mid-1990s have puzzled over how to address the increase. Some of their recommendations may have slowed the cost increase, but nonetheless, total costs have increased annually for 20 years.

In 2001 the parliament changed the rules in a way that will certainly further increase costs. When the Act was approved, the intention was that the beneficiaries would lose their right to assistance when they turned 65, the normal retirement age in Sweden. Subsequently, they were to rely on the regular services for the elderly. The change provided that those entitled to assistance before 65 have the right to keep it after 65. This will increase the costs for personal assistance, although somewhat reducing the costs for other service provisions.

A point of discussion has been how much the costs for assistance have raised total costs for the disabled, and to what degree it is only an issue of redistribution. Even without personal assistance, the authorities would still incur high costs for the individuals concerned. Let me remind you that when STIL initiated its pilot project in the 1980s it was purely a matter of redistribution and not of additional costs.

With some certainty, we know that the total cost of service provision for people with impairments has increased since the LSS was introduced. The cost increase for personal assistance does not correspond to cost decreases for other services. My guess – I admit it is a guess – is that between one third and one half of the total costs for personal assistance can be regarded as a cost increase.

Individual beneficiaries have individual situations. But let me use a figurative case to epitomize the difficulty of making this kind of estimate.

A young woman is receiving assistance 16 hours a day. This costs about 225,000 USD a year. Without personal assistance, she would probably qualify for community based in-home support services 3 hours a day at a cost of 75,000 USD a year. Her family would also be forced to help and support her for many more hours. One parent might have to give up a job, which was common before personal assistance was introduced, leading to the loss of production amounting to another 75,000 USD a year. We know by experience that the family’s health care consumption would increase, adding further costs.

It would also be more difficult for the family to interact socially. The young woman would be more dependent and her ability to make decisions about her own life would be more limited.

The personal assistance reform has been expensive, but it has had major advantages for the beneficiaries and their immediate circles. If you perform a cost-benefit analysis, taking into account all costs but also all welfare benefits, it is an open question whether there is a net cost or a net gain.

Attempts to substantially limit the reform have been strongly opposed and the instigators forced to yield.

You might think that the objections of a group consisting of 0.2 percent of the population would have little weight but relatives and friends make up a wider group. This support group might even include the personal assistants themselves. They constitute a new group in the labor market, established during the past 20 years and now amounting to about 80,000 people or 2 % of the Swedish labor force.

Assistant providers

A few remarks on personal assistants. Who are they? Three fourths are women and the same proportion are younger than 35. Between a fourth and a third have a university education. Some are part-time assistants, working their way through higher education or supplementing an income. Not long ago, turnover was between 20 % and 30 % a year, but seems to be decreasing. By a large majority, they like their job.

About 500 of the 20,000 persons who are entitled to personal assistance employ their assistants themselves. A couple of thousands are members of cooperatives that provide the assistance – the model proposed and tested by STIL.

The rest purchase assistance from private companies or municipalities. One explanation for why so few beneficiaries are employers or members of cooperatives is that many of them have cognitive disabilities and limited autonomy.

Since 2011, assistant providers, including cooperatives, must be licensed by a national authority. The demand followed disclosures of fraud and quality scamming. Many beneficiaries have low consumer power, making it hard to defend their interests. Since screening was introduced every fourth application of potential assistance providers has been rejected.

Beneficiaries’ opinions

How has the reform been received? I dare say, with considerable enthusiasm. The initial apprehension in the disability movement is gone.

In 2011 the Swedish Social Insurance Agency surveyed all beneficiaries funded by the national budget, developing a good picture of individuals with personal assistance and how they experience their support.

The most common impairment is reduced mobility. This affects about 80 % of beneficiaries. About half have dyslexia or speech impediments. One third have impaired vision or brain damage or other injuries resulting from disease. Many have multiple impairments.

Half have congenital disabilities, the other half acquired.

Approximately 90 % of the beneficiaries live in ordinary homes, alone or together with a partner, a housemate, or parents. For many in this category, personal assistance is a prerequisite for their way of living. The remaining 10 % live in adapted home environments or homes with special service.

Close to two thirds of the beneficiaries said the hours of assistance they receive were adequate. One fourth said they needed more.

Most of them felt they had strong influence on the selection of assistants and scheduling of help.

Assistants have to multitask, helping with personal hygiene, eating, dressing and undressing, but also with housework, transportation, health care, leisure activities, meeting relatives and friends, shopping or eating out, communication with others, etc.

More than 90 % of beneficiaries were satisfied or mostly satisfied with their assistants or assistant providers. About 30 % changed assistant providers, indicating the awareness of freedom of choice.

Many children have a parent as personal assistant. In ordinary life, parents have always assisted their children. The difference is that many of them are now paid for that work. It has become visible. There are pros and cons of having parents as assistants. It can be difficult for a child to grow up in the constant presence of parents. It can be difficult for parents to separate their roles as parent and assistant. Recent research has indicated that children with parents as their only assistants tend to be more isolated than those with external personal assistants. And the family risks becoming economically dependent on the needs of the child, and thus unwilling to let the child move out.

A large majority of beneficiaries experience assistance as absolutely crucial for participation in social interactivity and a meaningful life. In another survey, almost everyone — 98 % — pointed to personal assistance as the most important factor for their quality of life.

Even with personal assistance, large differences in living conditions remain between the individuals I am talking about and the population at large. But for thousands of Swedes, the right to personal assistance has meant a freedom never before experienced — a revolution for those with the most significant impairments. This does not mean that their lives have become easy. We cannot eliminate their disabilities. What we can do is partly compensate for them. But as I have emphasized, this costs money.

When I meet politicians and others who think it is too expensive, I have a couple of standard questions: Do you think the lives of the beneficiaries are too good? Would you like to change places with anyone of them? So far the answers to both questions have been negative. The discussion then peters out.

Other countries have introduced personal assistance, even if not as extensively as in Sweden. I hope more countries will follow, in terms of both the principle and the scope.

Thank you for your attention!

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