Speech by Hon Dr Bengt Westerberg, former Minister for Social Affairs in Sweden,
chairperson of the Board of the Swedish Institute for Disability Research, in Los Angeles,
June 26, 2013
Social Assistance - a revolution for people with disabilities
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
The preparatory work for the reform was initiated by my predecessor, Mr Bengt
Lindqvist, later to become Special Rapporteur to the United Nations regarding the
implementation of the Standard Rules for persons with disabilities, preceding the UN
Convention of 2006 on the Rights of Persons with Disabilities.
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
Regarding the terminology (technical terms) in English I have followed the translations used by the
Swedish National Board of Health and Welfare (Socialstyrelsen).
2 The Swedish Institute for Disability Research (in Swedish Institutet för Handikappvetenskap, or IHV) is a
collaboration between the universities of Linköping, Örebro and Jönköping.
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disabilities, and also for others with different kinds of impairments. At the end of the
1960s 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 1950s 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
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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
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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).
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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 selfdetermination 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 70,00080,000, 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 Swedishstyle support: the public authorities, as I mentioned, mandated the practical design.
Beneficiaries had little power and were largely treated like passive objects of care.
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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 selfdetermination.
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
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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.
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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 inhome 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.
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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
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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.
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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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