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6
Sven-Olof Brattgard
The XIIIth World Congress of Rehabilitation International
HANDIKAPPFORSKNINGEN
GÖTEBORGS UNIVERSITET
Övre Husargatan 36
413 14 GÖTEBORG
June 1976
VARIETIES OF LIVING FOR THE SEVERELY DISABLED
1
A LIFE FOR LIVING
The ancient Hebrew literature, known to us mainly through the Old
Testament, contains an interesting approach to disease and its
treatment. Disease represents disturbance of a functional unity
within the body, and also disturbance of relationships between
people and between individuals and divine powers. Cure involves
restoring unity, making the individual whole, making him "alive",
re-establishing relationships.
Rehabilitation is not just a medical and technical training process
or compensating the individual in some way for loss of a physical
function: in the deepest sence, it is making the individual alive.
When the Fokus foundation started its campaign in Sweden ten years
ago for integrated living for the severely disabled, it used the
slogan "A life for living". It is with this basic philosophy that
I will talk on the subject "Varieties of Living for the Severely
Disabled".
To be "alive" means more than just existing! To live as a human
being means belonging - giving and receiving feelings, thoughts,
knowledge and ideas. The aim of rehabilitation is not primarily
to help a person cope with activities for daily living but to
enable him or her to function among and with other people despite
his or her handicap. Rehabilitation can therefore never end with
medical or technical measures.
Integrated living has become a slogan in many countries. People
have come to realize that the disabled - like everybody else -
must live in contact and fellowship with other people. There is
a general drive to get the disabled out of institutions into the
community. Rapid industrialization often leads to change and
migration of the population. In such situations institutions
provide security for persons admitted to them and relieve the
patients' relatives of the burden. Institutions often also have
access to medical and technical resources which are lacking in
an integrated environment. These advantages are obtained at the
2
cost of isolating the disabled from their original environment.
In many countries the severely disabled always remain in their
normal environment, where they belong, with their relatives, in
the village. They have never been isolated from their normal
environment. Obviously, the process of helping the disabled to
become a living part of the community will depend on culture,
attitudes, and the economic and technical resources in the
community in which the disabled person lives. The aim will,
however, always be the same: the disabled person must be given
a possibility to live a life which, as far as possible, gives
him contact with other people and puts him on an equal footing
with them. Depending on the nature and degree of the disability,
and the economic, technical and cultural environment in which
the person lives, the needs will differ, however. There is there-
fore no general solution which can be adopted in all countries,
nor is there one solution for each country.
2
CONDITIONS FOR A SOCIAL LIFE
If the disabled person is to live a real life, he must have access
to:
somewhere to live - a home
someone to help him - personal service
something to do -. a job
education and leisure-time activities - culture
help with getting about - transportation
He must also have a financial situation which gives him at least
a minimum of security and independence.
3
HOUSING AND PERSONAL ASSISTANCE
3.1
A home of one's own a necessity
A home of one's own! That is the dream of all young people,
including the severely disabled. They want somewhere where they
can be alone and live their own life. A place to be in and live
together with the person one loves. For most people this dream
comes true. For the severely disabled it often remains an unful-
filled wish. Neither they themselves nor the community dare to
3
believe it can be possible. Relatives and experts are doubtful.
There are not only technical obstacles for the disabled to master,
The psychological obstacles - after years spent in a protected
environment at home or in a sheltered institution - are at least
as great.
In many countries recommendations concerning dwellings for the
severely handicapped have been set up. (Ref. 1, 2, 3, 6 and 7.)
It is technically and economically possible to build these
dwellings. The great problem is the 24-hours-a-day service which
the severely disabled need. Parents, wife, husband, brothers and
sisters, or other close relatives must generally handle this side
of things. In some countries they may receive some small financial
compensation but in most countries they get nothing at all. The
disabled person is therefore dependent on the good will of his or
her relatives years after years. Despite all the love and decision
this entails, it may become a burden to both the disabled person
and his family.
Integration in connection with dwellings means that the dwelling
must not only function for the disabled person but must also be
so situated and arranged that he can receive, and mix with, other
people. He must also be able to get into and out of his home. The
demands on the dwelling therefore also comprise demands on the
environment in which it is situated. It is not enough to see that
the kitchen, bathroom and other areas of the apartment suit the
disabled person: staircases, lifts and footpaths must also be
designed in an appropriate manner.
The housing problems of the severely disabled have in principle
been solved in three ways:
1. Residence in an institution
2. Residence in groups
3. Integrated housing
a. with 24-hours-a-day service
b. with limited day service.
Residence in an institution is too familiar to require description.
Segregation from an ordinary environment and an authoritarian
4
system of management within the institution are typical features
irrespective of the size and form of management of the institution.
In residence in groups, the disabled tenants are offered coordina-
ted group residence and they must coordinate their needs to greater
or lesser extent. Residence in groups creates fellowship between
the disabled persons but also means some degree of segregation
from their surroundings.
Integrated housing means that the disabled individual has the same
type of housing and right to tenancy as other people. The environ-
ment is admittedly technically adapted to the needs of the disabled
but decision processes and liberty of action are in principle the
same for the disabled and non-disabled.
3.2
Residence in groups
The philosophy of group integration has been put into practice in
planning in connection with both housing and employment. There
are examples of such solutions in my country as well as in other
countries. The best known examples in the world are Het Dorp in
Holland in connection with housing, and Viscardis Ability Inc. in
New York in connection with employment. Both of these examples
have been described in the literature: Het Dorp in the book:
"Personal Relationships, the Handicapped and the Community" (ed.
Derek Lancaster-Gaye, Ref. 3), and Henry Viscardi's in the book:
"Give us the Tools" (Ref. 4): As always, the size, organisation,
technical solutions etc. of these group activities are, of course,
open to discussion. One should beware, however, of getting trapped
in discussions on details. It is more important to analyse the
philosophy underlying these projects and the community in which
the disabled have to live.
The most comprehensive social experiment in group housing is the
communities of disabled persons named Het Dorp in Holland. When
society did not open its doors to receive the disabled, a community
of their own was built for them. 470 disabled persons live and work
in the community which is situated in a quarter of Arnhem. Within
the area there is a restaurant, a chürch, an infirmary, a shop,
5
a gymnasium, a sheltered workshop, living accommodation for the
staff and a post office. Through the shop, the church, cultural
activities and many other activities, efforts are made to attract
non-disabled persons from the surrounding area into the village.
The dwellings are grouped into units of 9 flats. These units are
linked by a system of covered streets or corridors. Differences
in levels in the landscape are compensated for by lifts. A unit
comprises 9 dwellings. The unit also includes a living-room cum
dining-room, kitchen and laundry room. A one-man flat has an area
of about 25 square metres and consists of one room, a hall and a
bathroom. Two flats can be adopted to a two-roomed flat and one of
the bathrooms can be altered into a kitchenette. Each flat has its
own address and street number. Post is delivered to the letter box
of each flat. Each flat also has a patio. From the constructional
and technical point of view, the village is of very high standard.
In principle, any technical adjustments a disabled person may need
can be carried out. This makes it possible for persons with very
severely disabilities to live there. It is possible to build a
family but these possibilities are limited.
The disabled receive all the help they may need for 24 hours a day
from permanently employed staff. The 9 tenants in each unit eat
their meals together in the living-room cum dining-room. The food
comes from the restaurant kitchen and is transported by trolley
to the housing units. Most of the disabled persons who work do so
in the sheltered workshop within the area or within the Het Dorp
organisation.
Transport to the centre of Arnhem takes place by bus or taxi, Het
Dorp is open to all Dutch citizens as the village is nationally
managed. The disabled tenants pay part or all of their housing
costs, depending on their financial situation. Those working in
the sheltered workshop have their rent deducted from their wages.
6
3.3
Integrated housing
3.3.1
Integrated housing with day and night service
For the severely physically disabled, and other severely handi-
capped, the philosophy of integrated housing and 24-hours-a-day
service has been most highly developed in the so-called Fokus
flats in Sweden. This form of housing is described in the book:
"Personal Relationships, the Handicapped and the Community"
(ed. Derek Lancaster-Gaye, Ref. 3).
The housing system for the severely disabled developed by the
Fokus foundation is based on the principle that housing for the
disabled should be interspersed among ordinary housing units in
an ordinary housing area. For service reasons, the flats are
grouped in a single building. The best solution has been found
to be a multistorey block of 6-8 storeys and several lift sections
in which one flat on each storey and one lift is reserved for the
disabled. The other flats on each storey are intended for non-
disabled tenants. This enables good distribution of flats for the
disabled and good service via the lifts. The service department
from which personal help can be obtained is situated on the ground
floor between the various lift-shafts. Experience has shown that
units of 10-15 flats are the optimum size from the serviee and
economic point of view. Adjacent to the service department there
are specially equipped bathrooms with hoists, rooms for physio- -
therapy and open for everybody, disabled or non-disabled tenants,
a specially equipped laundry-room and assembly room. When building
the block, every effort is made to adapt the roads, pathways, car
park and, as far as possible, even shops to the needs of the dis-
abled. For health care and medical treatment, the disabled, like
everybody else in the community, must rely on the resources of
the hospitals and clinics. As all local authorities in Sweden have
an organised home-nursing system, the disabled person also has
access to this service in his or her home. Employment is not
arranged within the housing area. The disabled, like everybody
else, must obtain work on the open market or in sheltered workshops.
The flats consists of 1, 2 or 3 rooms and a kitchen and are between
45 and 90 square metres in size. Alterations to fittings, such as
7
moving cupboards and walls, or raising or lowering benches and
wash-basins, are allowed for in the building plans and are there-
fore easy to arrange, All cupboards are movable and all benches
can be raised or lowered. Bathrooms are designed for the severely
physically disabled. Technical aids such as hoists for the bath-
-tub, can be installed. From each flat there is a signal system
to the service department.
Personal help is given by a mixture of personal home helps for
some hours a day and permanently employed staff, who are always
on duty. Every local authority in Sweden has a municipal home-
-help service which is available to all who are in need of personal
help owing to disability, sickness, age or for any other reason.
Through this government- and local-authority-subsidized service,
everybody can be allocated a personal assistant. If necessary this
home help comes for between 2 and 5 hours a day on up to 5 days a
week. The disabled tenants in the Fokus flats have access to this
personal help. Apart from this, the Fokus unit provides a 24-hours-
-a-day service. The staff providing this service are permanent
employees and the disabled person may call for help whenever he
or she needs to. The size of the staff is calculated so that no
one need wait for help for more than 15 minutes. The ordinary
home help provided by the local council usually wash the disabled
person, cleans the flat and shops and cooks for the disabled per-
son if he is unable to do so himself. The disabled person decides
himself what and when he wants to eat. If the disabled person has
visitors, he also receives help with preparing their food. The
home help also takes care of laundry and so on, and helps the
disabled person buy clothes etc.
The permanently employed staff act as a helping hand. They help
the disabled person go to the toilet, help heat up food, help him
eat, wash him at bedtime and provide any other help the disabled
person may need during the course of the day.
The disabled person pays rent just like the other tenants. If he
cannot cope with the rent he may apply to the local council for a
rent allowance. Persons on premature retirement pensions receive
an allowance for the whole of their rent. The costs of personal
service are also payed for. If a person has no income apart from
8
a premature retirement pension, the service is provided free of
charge.
A special transportation system is arranged in the community for
the disabled.
Fokus flats are intended for the severely disabled. Some of the
tenants of these flats are practically unable to move their arms
and legs and can use their electrical wheel chairs only by means
of a blow-suck system (Possum appliance).
For some years we have also been experimenting in Sweden with a,
variation of Fokus living by which five or six severely disabled
persons live together. A house is built in a residential area or
a large flat is rented in some town. Each disabled person has his
or her own room and toilet and there is a communal kitchen and
living room. As with the Fokus flats, the groups have access to
home help and 24-hours-a-day service. The transport service is
also available to these people.
3.3.2
Integrated housing with limited day service
For those who can manage their personal service themselves, or with
the help of relatives, or who only need service for a limited
number of hours per day of week, there is a third form of integrated
housing. When building new blocks of flats or renovating old flats,
flats adapted to the needs of the disabled, known as interspersed
invalid flats, are created. In these flats the disabled have access
to a personal home help from the council for an hour or so each
day. There is no 24-hours-a-day service. The transport service is
also available to these people. This form of housing enabled the
disabled to remain in the environment they are used to even after
becoming handicapped. They can stay among friends and acquaintances
and this means a great deal to them. Obviously, these flats cannot
be used by persons who need 24-hours-a-da; service but for many
paraplegics and other people with a similar degree of disability,
this form of housing works excellently.
9
3.3.3
Estimation of the need for integrated flats
The described integrated housing and services are mainly designed
for the physically handicapped. In principle, the same forms of
housing are available to the mentally retarded. For these people
the main problem is not technical adaptation of the home of lif-
ting aids etc.: it is more a question of personal supervision and
support. This personalihelp is given by home helps and permanently
employed staff.
The question of housing for the severely disabled must never be
viewed isolated from the community as a whole. If the service in
the home and the transport service do not work satisfactorily,
most disabled persons will be forced to live in groups or insti-
tutions. Even if these>service are provided, there will be a
certain, though limited, need for institutional or group housing.
There are disabled persons who desire this form of housing tempo-
rarily or permanently. It does have its disadvantages, however.
It may easily lead to a feeling of isolation and total care. The
individual easily becomes institutionalized.
For the severely disabled in the age-groups below 60 years in
Sweden, where there is access to service in the home and a tran-
sport service, the need of beds in nursing homes or group inte-
gration is estimated to be about 1 per 20,000 inhabitants. Inte-
grated housing as in the Fokus model would require three places
per 10,000, and interspersed flats adapted to the needs of the
disabled about twenty places per 10,000 inhabitants. In these
figures the needs of housing for the old and sick are not included.
3.3.4
Housing for everybody
The great importance of the form of housing for the rehabilitation
of the disabled and their return to a more normal life in the
community has sometimes led to both the UN and the EEC secretariat
in Brussels trying to draw up guidelines for future building of
housing so that they can be adapted to the needs of the disabled.
(Ref. 7. )
In the discussions of this and similar matters it is often argued
that the disabled are such a small group in the population that
10
building production and planning cannot be generelly adapted to
their needs. Instead, special measures for the disabled are re-
commended. This argument is based on faulty premisses.
Firstly, regarding the number of disabled persons: several studies
in the Nordic countries show that, for example, 7-10 % of the
population aged between 16 and 75 years have difficulty in walking
or are confined to wheel chairs. But it is not only the disabled
person's own situation which is influenced by the housing situa-
tion. He or she is a member of a family and his or her situation
influences that of his wife or her husband, children, parents
and brothers and sisters. If the housing question is viewed in
this realistic manner it acquires another dimension. It is then
not just the 10 % of the population that are disabled that are
concerned but many times this number.
The second mistake we make when reaching decisions about general
measures or special measures for the disabled is that we build
housing for the healthy and special housing for the disabled. We
forget that we ourselves may end up in the disabled group. Let us
for a moment leave the statistics about how many disabled persons
there are in the community to day and instead ask ourselves "how
great is the risk of my becoming disabled?" If we live sufficiently
long, all of us become more or less disabled. The risk of a person
aged 20-25 years having temporarily or permanently to sit in a
wheel chair or having such difficulty in walking that he needs
specially adapted housing is of the order of 60-70 %.
A third erroneous assumption is that special measures are necessary.
People think of persons in old-fashioned or unsuitably designed
wheel chairs. Our investigations show that with small, modern wheel
chairs housing can to a great extent be adapted to the needs of the
disabled. It is easier to replace an unsuitable wheel chair than
to alter a flat.
A fourth source of error is that the life of housing units is not
considered. During the fifty years during which a dwelling is
occupied many people will live there and enter its door. Many
of these will be disabled.
11
A non-parliamentary working group at the EEC secretariat in
Brussels recommended in 1975 guidelines for new housing production
which would lead to most flats in ordinary blocks of flats being
adapted to the needs of the disabled in the commonest types of
indoor wheel chairs. (Ref. 7.) In my own country Parliament has
also decided that future building shall be based on these princip-
les.
4
TRANSPORTATION SERVICE
A home of their own and personal service for the severely disabled
must be supplemented by a transportation system. Private cars and
taxicabs are not enough for the severely disabled. During the last
few years we have in my country combined the domestic service with
a transport service under the auspices of the local council. Spe-
cially adapted minibuses, which can be booked by telephone, pro-
vide the disabled with transport to and from their homes, to and
from work, the theatre, the university, restaurants and on visits
to friends. They travel in their own wheel chairs, for example, and
are carried up staircases. (Ref. 5.) The handicapped person pays
what a normal bus-ticket would cost for the journey. Originally,
the transportation service was started by the Red Cross, Lions
clubs and other private organisations. Today the local authorities
are responsible for the service. The Government pays 35 % of the
costs.
5
WORK AND LEISURE TIME ACTIVITIES
After the need for a home of one's own and personal service, come
the demands for contact with those parts of life which are covered
by the words work, culture and leisure-time activities. Although
the main theme of this paper, is housing and service, we must
stress the point that the disabled need something to do. For some
disabled sheltered workshops and segregated day-time activities
are the only realistic solution but we must work for integration
of the severely disabled into ordinary jobs and cultural activities.
The community must in one way or another help the disabled to be-
come accepted as full members of society in these respects too.
12
6
EFFECT OF INTEGRATED LIVING
Attempts have been made to analyse the effect of integrated
housing according to the Fokus model (Ref. 6.) The tenants' situa-
tion before and two years after moving into the Fokus flats were
compared. Most of the tenants (65 %) had previously lived in an
institution or another sheltered environment. The majority of
them were aged between 20 and 35 years. They had received all
the help the community could provide in the form of medical and
vocational rehabilitation. At the time of moving into the Fokus
flats less than 8 % were working. After two years 36 % were
working and after a further two years up to 80-90 % were working
in some units. Less than 10 % of the tenants were married or li-
ving with their fiancé(e) when they moved into the flat. Two years
later 34 % had married a disabled or non-disabled person. The
figure rose later. Since the tenants had received all the help
the community could provide before moving into the flat, these
results must be interpreted as evidence that the increased re-
sponsibility and independence stimulated the tenants to live a
more normal life. A home of one's own and guaranteed service mean
something that medical and vocational training or institutional
care cannot provide. A further advantage, not least important
from the politicians' point of view, was that Fokus housing cost
only two-thirds as much as accommodation in a nursing home and
half as much as a bed in long-stay hospital.
7
PSYCHOLOGICAL ASPECTS OF SOCIAL LIVING FOR
THE SEVERELY DISABLED
Housing, service in the home, transport service and various types
of vocational rehabilitation are important measures for enabling
the disabled to live a real life in cultural and social fellowship
with other people. But these measures are not enough. Our technical
resources will be inadequate or meaningless if we do not also tackle
the psychological problems which must be solved if a disabled person
living in the community is to be truly integrated. One cannot talk
about types of housing for the severely disabled without discussing
this important problem.
13
To be disabled is to be dependent. To a great extent this depen-
dence is unavoidable. With some exaggeration, we may say that
the real handicap is the dependence itself. Several of our inves-
tigations have shown what a great strain this means to many people.
On the other hand, there are disabled persons who have become
accustomed to being well cared for and their hope is that there
will be someone to take care of them in the future too. They lack
the courage or the ability to assume responsibility for themselves.
Dependence of this emotional kind counteracts the process of inte-
gration and makes complete interaction between the disabled person
and his environment impossible.
In certain respects integration is also counteracted by hospital
organisation. At the acute stage of his illness the disabled per-
son is taken care of. At this stage it feels very good to know
that one can hand over all responsibility to skilful and well-
-trained doctors and nurses. Conforming to the hospital routine
is easy: it fells quite natural to become an integrated part of it.
But at the same time this integration implies segregation from the
community outside the hospital walls. In hospital the individual
patient is to some extent helplessly dependent on the specialist's
decision. His practical knowledge of the subject is quite inade-
quate, his experience far too limited. Hospital organisation,
designed for emergency situations and acceptable for short periods,
has unfortunately been used in rehabilitation clinics also. And
yet the functions of medical rehabilitation - all emergencies
apart - are so distinctive as to demand a special form of organi-
zation. It should not be a copy of the organization used in emer-
gency situations or for long-stay care. Our investigations show
how important it is to tackle the problems posed by the negative
effect of institutionaly care. In rehabilitation as well as habilita-
tion, the value of independence must be clearly stressed. When a
disabled person leaves the confines of an institution, he must be
prepared to take on full responsibility for himself.
In the system of nursing and integrated living the disabled person
has to play different roles. In the institution he is a passive