POLIO PLUS

movement against disability

WHITE BOOK
(De) Institutionalization - Our Reality

‘Cicero’ Edition
Skopje, 2010
Title:
White Book (De) Institucionalization - our reality

Publisher:
Polio Plus - movement agaisnt disability
For the editor:
Zvonko Shavreski
Translation:
Gulnihal Ismail
Nomber of copies
500
Printing:
Jugoreklam - Skopje

Ovaa publikacija e izgotvena so pomo{ na Evropskata Unija i Inicijativa

za mentalno zdravje - Institut otvoreno op{testvo

This publication has been produced with the support of the European Union and
the Open Society Mental Health Initiative
 Introduction
Disability has existed throughout human history and modern science has
further defined the phenomenon. Approaches to disability have evolved
from traditional attitudes to medical models and social integration models.
Theories have varied as to the ways in which disability affects the lives
of disabled people: some focus solely on separate affects of disability—
whether biological, psychological, medical, educational, or social—while
others view all these factors as combined in their affect.

One discipline which differentiates between all the aforementioned factors

is that of defectology. Since being constituted as a branch of science, it
has promoted the establishment of specialized institutions that are neither
medical, nor pedagogical, nor social, but authentically different. By em-
phasizing the need to address the problems of disabled individuals directly
through discrete social interventions, it represents a step forward in the
design of a new system of education, rehabilitation and empowerment
of disabled people. The origins of the system for the protection, educa-
tion, empowerment and rehabilitation of disabled people can be traced
back to 1949. This system was instituted on the basis of modern principles
of rehabilitation. Thus, from 1955, all pre-existing special pedagogical in-
stitutions were transformed into institutions for rehabilitation. In practice,
however, these institutions failed to fully implement the modern principles
of rehabilitation. This was primarily due to a lack of expert personnel and
to strong resistance on the part of some pre-existing staff in the relevant
institutions of healthcare and education.

With the passing of the Statute of the World Health Organization in 1974,
rehabilitation became not only a component of the healthcare system but
also a legal right of disabled individuals and an obligation of society.

The constitution and establishment of institutions for rehabilitation entailed

a radical and wide-ranging modernization of practices in the protection,
education, and medical (curative) and remedial (defectological) treatment
of people with disabilities — a process whose consequences are still evi-
dent.

1
 A network of institutions has been established providing various forms of
professional education, healthcare and social protection. However, cur-
rent practice is burdened with numerous shortcomings which, if not ad-
dressed, will not only hamper future development and modernization but
may also contribute to the abandonment of those components that proved
successful in the past and which previously constituted the core of the
whole practice. Failure to address these shortcomings could lead to a pro-
cess of over-rapid deinstitutionalization and the abrupt termination of de-
fectological theory and practice in Macedonia.

Progress in efforts made to tackle the complex problem of disability have

depended on numerous factors: above all upon the varying material
means available to different countries, but also on differences in state leg-
islation, social systems, and traditional and cultural values, etc. Humanity
everywhere is concerned with the problems of disabled children, problems
which have long since ceased to be regarded as merely individual and
have acquired a significant social dimension.

The following demands need to be met in future: no social practices should

be allowed to develop or be reformed without periodic reviews of past
activities and without projections of future development on the scientific
basis of assessments of previous experience.

This book reviews the overall development of rehabilitation institutions in

the Republic of Macedonia, with particular emphasis on the establishment,
development and functioning of the Special Institution in Demir Kapija—an
institution with fifty years of experience in the rehabilitation of individuals
with mild, severe and profound disability.

Polio Plus,
movement against disability

2 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 C hapt e r FI R S T
1
The Projection of the System

1.1 Institutional protection in the Republic of Macedonia

The problems of developmentally disabled children1 have long since

ceased to be regarded as the problems of individuals: they have acquired
a significant social dimension.

Progress in addressing this complex problem has been affected by nu-

merous factors. According to Ajdinski and Andreevski2, these factors in-
clude, above all, the varying material means of different countries, but
also differences in state legislation, social systems, and traditional and
cultural values.

The second half of the twentieth century saw growing interest and in-
creased efforts to address the existential and essential problems of
mentally retarded children, with greater scientific and social attention,
increased financial support and legal regulation, an expanding network
of various institutions for these children, the engagement of a greater
number of expert staff in the field of protection and rehabilitation, and the
strengthening of the international movement for the integration of these
children within the community and the normalization of their relations with
society.

Historically, the Church has had a significant influence on the social life of
the population in Macedonia and this institution also played a role in the

1
The terms “mental retardation” are till today are used by the Institution for social work and de-
fectology and are part of their daily terminology.
2
See the book from Ajdinski L., Andreevski V., ‘50 Years of Protection, Rehabilitation and
Education of Disabled Persons in the Republic of Macedonia, 1949–1999’, Skopje, 2001.

GLAVA 1: PROEKCIJA NA SISTEMOT 3

 care of mentally retarded children. There is no evidence that the Church
engaged in any kind of organized provision of custody for such children,
but individuals who had been rejected by their family and community and
who sought help from the church would be provided with assistance, al-
though this assistance was limited to providing shelter. Research in this
field shows that some individuals with disabilities were accepted in a large
number of monasteries throughout Macedonia—for example, the monas-
tery in the village of Slepche, the monastery of St. Joakim Osogovski in
Kriva Palanka, the monastery in the village of Kalishta, near Struga, and
many others.

The institutional protection of children with impaired development began in

1949 with the opening of the first institution in the Republic of Macedonia.
The absence of pre-existing institutional forms of protection and the lack
of qualified staff and practical experience in the field of protection and re-
habilitation in Macedonia prior to 1945 caused enormous difficulties once
attempts were made to overcome problems that had been neglected for
centuries.

1.2 Developmental stages in the social protection and rehabilitation of

mentally and physically people with disability
Since 1945, progress in the social protection and rehabilitation of the
mentally and physically disabled has been influenced by developments
in various branches of science and by social and economic conditions in
our country and throughout the world. The humanization of conditions for
the disabled was first driven by efforts for a more consistent realization of
the values of a socialist society, as expressed through a large number of
measures and activities to develop the psychological and physical poten-
tial of individuals with hindered development and to include them more
successfully in everyday life. It is important to emphasize that care for
these individuals was given appropriate priority at certain periods in the
development of our society, always bearing in mind that there had been
no organized protection and rehabilitation for such children in the region
of Macedonia until the end of WW2.

Despite the accumulated problems of previous neglect, the priorities of

social policy immediately after Macedonia’s liberation in 1945 established
relatively promising conditions for the permanent development of protec-
tion and rehabilitation.

4 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 Following a wide-ranging review of this issue by the Republic’s authorities,
the first institution for the disabled children was opened in 1949. This was
the outcome of a new attitude in a new society—an attitude which viewed
disabled people as equal to other citizens and capable, depending on their
abilities, of being rehabilitated and of contributing to social development
and progress together with other citizens.

Rehabilitation was seen as the most appropriate and most humane form
of social protection for disabled people. The development of a system to
provide for such rehabilitation was made an integral part of social policy,
resulting in the establishment of a n extensive network of rehabilitation.

From a historical distance, therefore, and taking into account the socio-
economic conditions in Macedonia, we may state that significant results
have been achieved in solving the most essential issues in the protection
and rehabilitation of disabled persons. Amongst these achievements may
be listed:

◘◘ The establishment of a network of institutions for the protection and

rehabilitation of disabled persons of all categories and ages.

◘◘ The recognition of a large spectrum of rights to protection and reha-

bilitation in many social spheres: the right to social care, to education, to
pension and invalidity insurance, to employment, etc.

◘◘ The establishment of a financial basis and the training of staff to pro-

vide institutional and non-institutional forms of protection for all individuals
with hindered development.

◘◘ The establishment of basic conditions for the application of the most

modern theoretical and practical findings in defectology and other scien-
tific branches to the protection and rehabilitation of disabled people.

Moreover, the participation of employees and citizens in solving the

problems related to protection and rehabilitation has been strengthened
through the development of a system of delegation and the introduction of
self-government within the social care system.

The historical development of social protection and rehabilitation in Mace-

donia may be divided into five stages:

GLAVA 1: PROEKCIJA NA SISTEMOT 5

 Stage one encompasses the period from 1945 to 1955. This period saw
intense activity on the part of public authorities, particularly the bodies
set up to provide social care, and the involvement of political and charity
organizations in identifying the problems of disabled persons, seeking so-
lutions for their social protection and undertaking long-term measures to
help them lead independent lives.
In addition to various forms of assistance provided for these individuals,
a number of special institutions for special education and inclusion in
work were established in this period. Special institutions for children and
adolescents with visual and hearing impairments were established and
special classes for mentally retarded children were formed in Skopje and
Bitola. Specialized workshops where adolescents with vision and hearing
impairments were employed provided the basis for protective workshops
which later acquired a special legally regulated status. Thus, this stage is
considered to be the period in which the foundation was laid for the system
of protection and rehabilitation in the Socialist Republic of Macedonia.

Stage two (1956-1965) was characterized above all by the recognition of

the need to build up a differentiated and well designed institutional system
for the protection and rehabilitation of particular categories of children and
adolescents with hindered development according to age, disorder, and
the specific manner of treatment required in various stages of rehabilita-
tion. This period saw a strengthening of the financial and human resource
capacities of the institutions for protection and rehabilitation, improve-
ments in identifying and treating disabilities, the establishment of protec-
tive workshops and the involvement of many social organizations in the
realization of a system of protection and rehabilitation.

All these issues were captured in an in-depth study undertaken in 1957 by

the professional department of the Republic’s body for social care. Taking
into consideration the latest professional and scientific knowledge in our
country and in the world and the need to improve protection and rehabilita-
tion, this study gave a projection for the further development of this activity
with all its components. Thus, in this stage of development, the modern-
ization and adaptation of premises and equipment were undertaken and
several new institutions were built for the hearing impaired and develop-
mentally disabled children.

A school for child logopedists was opened in Bitola in 1957. The follow-
ing year saw the opening of the Special Institution for profoundly men-
tally retarded children in Demir Kapija. In 1960, the Centre for Audiology
in Skopje was opened. A network of special classes for mildly mentally

6 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 retarded children was setup within elementary schools in Skopje, Bitola,
Prilep, Veles, Stip and other places. A department for moderately retarded
children was established in Demir Kapija Institution and in Dracevo vil-
lage near Skopje in 1963. The first protection workshop for people with
impaired hearing, ‘Svetlost’, opened in Skopje in 1962.

It is important to mention that this stage saw the passing of an increasing

number of federal and republic laws and regulations in response to prac-
tical demands in the field of protection and rehabilitation. The following
legislation was vital in bringing about a coherent system of protection and
rehabilitation: the Regulation Book of categorization and registration of
children with hindered physical and psychological development (Official
Gazette of FNRJ, No. 5/60); the law on the professional rehabilitation of
children of insurance-holders (Official Gazette of FNRJ No. 5 /60); Rules
and regulations for protective workshops (Official Gazette no 3/61); the
Law on Special Schools in the People’s Republic of Macedonia (Official
Gazette of RM No. 11/61) and other regulations in the field of education
and social care.

The third stage, between 1966 and 1974, saw the greatest attention paid
to the protection and rehabilitation, and consequently to the organization
and quality of categorization of those children who had not been catego-
rized unti then. Particular attention was paid to moderate and severely
mentally retarded children and children with severe invalidity. The network
of special schools for less severely retarded children was enlarged and
protective workshops underwent further development.

The following institutions were established in this period:

1. The Institution for the rehabilitation of severely disabled and mildly dis-
abled children, established in Dracevo near Skopje 1965, moved into new,
specially-designed premises in Skopje in 1970. (It is now called the Institu-
tion for the rehabilitation of children and adolescents –Skopje.)

2. An annex for severely mentally retarded children3 was built at the Spe-
cial Institution of Demir Kapija in 1970 (Ergela-Demir Kapija).

3
The terms are quated from from Ajdinski L., Andreevski V., ‘50 Years of Protection, Rehabilita-
tion and Education of Disabled Persons in the Republic of Macedonia, 1949–1999’, Skopje, 2001

GLAVA 1: PROEKCIJA NA SISTEMOT 7

 3. The Institution for the rehabilitation of children and adolescents with se-
vere invalidity was established in Banja Bansko, near Strumica, in 1974.

4. Special elementary schools for mildly mentally retarded children were

established in Prilep and Bitola in the school years 1966/67; two other
such school were established in Skopje in 1970/71 and in 1971/72; and an
additional school was opened in Veles in 1972/73.

5. The following protective workshops were established in this period: ‘So-

cijalen Borec’ in Bitola, ‘Napredok’ and ‘Ukras’ in Ohrid, ‘Uniplast’ in Ku-
manovo, ‘Makedonija’ and ‘Marketing’ in Skopje.

In addition to the opening of new institutions, this period was also signifi-
cant in that it saw the building of premises for those categories of children
previously covered by protection and rehabilitation but who had did not
had adequate conditions. A Centre for hearing, speech and voice was
constructed in Skopje and new premises were created for the Centre for
occupational rehabilitation for adolescents with impaired hearing, with
classrooms for practical classes and an infirmary.

Stage four encompasses the period from 1974 to 1990. This was a period
of qualitative improvement in the protection and rehabilitation of children
with hindered development. With the establishment of new conditions and
the formation of self-governing communities of common interest in the
fields of social care, education, invalidity and pension insurance, health-
care and health insurance, and in the social care of children, new solutions
were found to increase the capacities and provision of financial resources
for existing institutions in the Republic. Working conditions were improved
with the enlargement and building of annexes to existing premises, the
introduction of new equipment with new technical devices, better training
and improvement of qualified staff and increased active participation of
employees in solving problems in the area of the protection and reha-
bilitation of children with hindered development. The delegation system
provided much improved working conditions for children and staff in these
institutions.

Stage five encompasses the period from 1990 to 1999, a stormy decade
in the nation’s political, economic, social and cultural development.
This period saw radical changes as Yugoslavia and the socialist system
fell apart and wars broke out across the region. Macedonia became an
independent and sovereign country without bloodshed, but the transition

8 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 to a market economy involved the privatization of state capital and the
closure of many previously nationalised factories and companies. Thou-
sands of jobs were lost and there was a rise in smuggling, corruption, brib-
ery, and other asocial phenomena such as prostitution, alcoholism, drug
abuse, delinquency, suicide, and serious crime.

Despite these harsh social and economic conditions, the institutions for
protection and rehabilitation of disabled individuals were nevertheless
able to fulfil their function normally. We would like to emphasize our grati-
tude to the many donors—friendly nations and charity organisations—who
helped financially with equipment and food in this period.

This period saw the opening of the Department for Defectology Studies in
the University of Skopje—a matter which will be described in greater detail
later in this text.

A new stage in the protection and education of children with hindered de-
velopment and mentally retarded children has been underway since 2000:
a period of deinstitutionalization and integration affecting the children of
the Special Institution in Demir Kapija.

GLAVA 1: PROEKCIJA NA SISTEMOT 9

 1.3 New winds - Deinstituionalisation

The process of reforming the social care system in Macedonia commenced

in the mid-1990s with the establishment of the first social organization in
the community, a day-care centre for adults with mental disabilities in Kriva
Palanka. Over the next seven years, the Ministry of Labour and Social Pol-
icy established a network of 20 day-care centres for children with special
needs. In cooperation with domestic and foreign organizations, training
was organized for professionals from social care centres and employees
in the day-care centres. In 2007, the Ministry offered financial support to
NGOs managing day-care centres for adults with mental disabilities.

However, the first concrete measures towards deinstitutionalization were

taken in 2000, with the signing of a Memorandum for Cooperation be-
tween the Ministry of Labour and Social Policy, UNICEF, and the World
Health Organization. A new administrative prohibition stating that no new
residents were to join the Special Institute in Demir Kapija came into ef-
fect. Financed by UNICEF, the project began on February 13, 2001 as a
pilot project lasting for a period of six months. During these six months,
the Institute for Defectology cooperated with the centres for social work.
These centres are responsible for children in institutions and it is the cen-
tres which are supposed to provide children with foster families or adop-
tive families.

Towards the end of the project, the Institution recommended that about ten
children leave the Special Institution of Demir Kapija. The Institute faced
the question of where those children were to be sent. The centres for so-
cial work did not manage to provide families, while the professionals from
the Institute were unanimous that the children could not continue to stay
there. Throughout the project, the Institute pointed out that that they were
building a unique model for work with children in Demir Kapija, a model
which was recommended a few months later for application in East Euro-
pean countries where this project was already in progress.

A Macedonian model of deinstitutionalization was being constructed. This

is why the Institute offered a solution that was unacceptable and inappro-
priate to some people. However, the Institution had a clear vision of be-
ing on the right track. The Institute offered a temporary solution whereby
deinstitutionalization was to be achieved through a process of re-institu-
tionalization. The Institution allowed that eight children should leave and
this was accepted by the Institution for Social Care and the social care

10 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 centres. In the following four months, in the period between September
and December 2001, the centres for social work invested a great deal
of effort and found families for all the children. Hence, the problem of re-
institutionalization was surpassed.

In 2002, eleven more children left the Institute, while four children found
families in 2003, making a total of 23. The social work centres are now
searching for families for six more children. The number was expected to
increase by September, when the project will still be valid. The problem of
providing families for children with special needs has been almost over-
come. The centres for social work have been working intensely on find-
ing and educating families who wish to take care of children with special
needs.

In 2007, as a result of the political dedication for a complete implementa-

tion of deinstitutionalization, the first national Strategy for the deinstitu-
tionalization of the social care system in Macedonia was designed for the
period 2008–2018. One of the primary objectives of this strategy is the
deinstitutionalization of the Special Institution of Demir Kapija.

The strategy resulted in a Memorandum signed by the Macedonian Gov-

ernment and the Ministry of Labour and Social Policy with the Open So-
ciety Institute: the Initiative for mental health, consisting of a plan for the
deinstitutionalization of some dependants from the Institute.

The plan affected 192 persons and was to develop in three stages for the
period September 2008 and September 2011. Six services for accom-
modation in the community were to be formed, including the provision of
48 apartments. The apartments were designated according to the origins
of the dependants, the wishes of these individuals, and the existing infra-
structure in the community. The most appropriate locations were selected
as Skopje, Negotino, Gevgelija and Demir Kapija.

The first 4 dependants left the Special Institution on December 3rd, 2008
and went on to live in Skopje.

Besides the prior role that Polio Plus had played in the process of the proj-
ect implementation, there were some difficulties that spoiled the time dy-
namics, as well as the plan itself. Polio Plus was removed from the project,
and the work was carried out by the organization Poraka from Negotino.
Up to now, 28 persons have left the Institution to live in the abovemen-
tioned cities.

GLAVA 1: PROEKCIJA NA SISTEMOT 11

12 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
 C H A P T E R T WO
2
Demir Kapija - our reality

2.1 The Growth of Demir Kapija

Intensive efforts have been made to develop the material and staff re-
sources to cater for the needs of people with physical and mental dis-
abilities. As a result, a system of care for children with hearing, speaking
and visual impediments has now been established on a largely adequate
basis. Special schools and institutions for education and upbringing have
been opened for persons with impaired hearing and speech, as well as for
persons with impaired vision. There is an Institution for rehabilitation and
correction of speech in Bitola, while in Skopje we have an 8-year school
for persons with impaired vision and a vocational trade school providing
practical training for persons with impaired hearing.

According to the seriousness and urgency of their problems, mentally

retarded children are ranked immediately after these with hearing and
speaking impediments. Mentally retarded children are divided into children
with mild mental disability who require special classes or regular 8-year
schooling, and children with severe and profound mental retardation who
require special social institutions of a closed type.

According to incomplete and unreliable sources, the Council for Social

Protection states that there are 619 children with mental disability, most of
them being in the category of mild mental retardation.

Children with milder cases of mental retardation attend regular primary

schools. There are special classes for those children with special needs:
two in Skopje, one in Tetovo and one in Kumanovo.

Severely and profoundly mentally retarded children require special insti-

tutions with social, educational and health care, while the most profound
cases of mentally retarded children require shelter for social protection.

As a result of anatomical and physiological defects or loss of senses,

the sensitive memory is generally absent in profoundly mentally retarded
GLAVA 2 DEMIR KAPIJA NA[A REALNOST 13
 children. These children cannot maintain, connect or reorganize their im-
pressions. Even if maintained, those impressions are so marred that they
rapidly vanish. Hence, these children can hardly generate even simple
notions.

Due to this inability of creating individual notions, they cannot recognize

their parents or guardians, even if in permanent contact. These children’s
thought processes, as well as speaking abilities, are at a very low level.
They are unable to learn to speak, but only utter articulated sounds, while
the severest cases only repeat or ‘sing’ the same words or parts of some
song they have learnt mechanically. Such children cannot be educated,
taught to behave or to redirect certain habits and mechanical gestures.
Given these disadvantages and the burden these problems place on such
children’s parents, the Council for Social Protection resolved in 1957 to
provide a shelter for profoundly mentally retarded children.

Having examined the position of the severely disabled children and their
families, the Council decided on September 16, 1958, to open such a
home in Demir Kapija. It was concluded that the centre would become a
national institution with budgetary financing due to its institutional type.
The Council also concluded that the institution would commence working
on October 1, 1958.

14 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

CHAPTER 2 DEMIR KAPIJA OUR REALITY 15
16 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
CHAPTER 2 DEMIR KAPIJA OUR REALITY 17
 2.2. Modernization of the premises, equipment
and aids in the Institution

The development of the Special Institution in Demir Kapija followed five

stages:

The first stage of the Institution’s development comprises the period be-
tween 1958 and 1968. This period was characterised by difficulties in all
spheres since its opening and its beginnings with the previous organiza-
tion. Until October 20 1958, the facilities of the Institution had previously
been in the ownership of the Archaeological Museum of the Federal Re-
public of Macedonia and the same facility was built to serve the purpose of
a hospital for the employees of the Yugoslav railway network.
There had been no institutions dedicated to tackling this problem in Mace-
donia until 1958. Upon opening, large numbers of dependants were living
in small bedrooms, while the living room was organized in one hall only.

18 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 The employees had primary or no education at all. At this time, the Institu-
tion had all the characteristics of a shelter.

The second stage of the Institute’s development comprises the period be-
tween 1968 and 1975, characterised by efforts to turn the organization
from a shelter into a modern institution.
The invested finances were used to create a material and a special base
for new living conditions in the Institution. A new organization was set up
to provide functioning in an appropriate way, as well as to obtain quality
improvements in the dependants’ protection and the treatment for children
with severe and profound mental disability.

The cases of severe intellectual disability were separated from those with
profound disability by the creation of three wards:
◘◘ A ward for the accommodation, nursing and healthcare of children
with profound intellectual disability situated in Demir Kapija.
◘◘ A ward for the rehabilitation, treatment and upbringing of severely
disabled persons, the so-called Annex, located out of Demir Kapija.
◘◘ A common ward.
The Annex was opened on May 30 1970, and represented a step forward
as it allowed for the separation of less severe cases from those with pro-
found disability. Apart from being provided with nursing and accommo-
dation, those persons are also provided with rehabilitation treatment and
upbringing. In the department for persons with profound mental disability,
the dependants are organized into wards according to their psychological
and physical conditions, age, sex, and mobility. The wards have appropri-
ate bedrooms, workrooms, duty rooms, showers, a pantry, and a toilet.
The Annex has workrooms with desks, chairs and various didactic materi-
als, as well as playgrounds, sandpits, TV clubs, etc. In 1971, a barrack
was built in the Annex aimed at a workroom for the dependants (sewing,
knitting, metalwork, etc.)
The third stage of the Institute’s development comprises the period be-
tween 1975 and 1980. This stage is characterized by stabilization, greater
improvement of living conditions, and greater activity of the Institution. The
institution takes constant care of the property as one of the basic tasks for
normal work.
One of the existing tasks is the Institution’s extension and better equip-
ment. For obtaining this objective, a developing program was drawn up for
the period 1975-1980. Efficient and successful realization of the program
enabled continuous annual increase in accommodation capacity.

CHAPTER 2 DEMIR KAPIJA OUR REALITY 19

 Before the expiry of the 5-year plan, the Institution provided the planned
capacities for 450 dependants. Meanwhile, the Institution strengthened
financially, and there were newly employed experts, too. There were semi-
nars, and courses on theory and know-how instructions held for profes-
sionalizing the nursing staff. Other employees were sent to specialization
at the Faculty of Defectology in Belgrade, as well as on the Higher social
school in Skopje. In this stage the number of employees was increasing
more and more.

The fourth stage comprises the period 1980-1994. This was a period of
stagnation in which the Institution suffered a complete crisis. The life con-
ditions were deteriorated, even the food was with lower nutrition quality.
What is more, there were times when the Institution had problems with
heating, water heating, irregular washing, etc. and all this due to the lack
of finances.

The fifth stage of the Institute’s development comprises the period 1994-
1999. The Institution invested maximum efforts to improve itself in every
regard. The Institution had previously been financially supported by SIZ
for social protection. Nowadays, financial assets are provided by the Min-
istry of Labour and Social Policy and the Government.

2.3. Description Of The Institution Demir Kapija

An institution for long-term accommodation of people with intellectual

disabilities, the Special Institution Demir Kapija is under the competence
of the Ministry of Labor and Social Policy. DK is located in the south of
Macedonia on the outskirts of the town of Demir Kapija. The town of Demir
Kapija has a population of over 2,500-3,000 inhabitants, the majority of
who work in agriculture.

2.3.1 Objectives and tasks of the Institution

The Institution’s tasks are to provide the following:

◘◘ Accommodation of persons with mental disabilities.

◘◘ Care of dependants with profound mental disabilities, particularly of

those who are immobile and cannot maintain hygiene.

20 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 ◘◘ Permanent health - care.

◘◘ Rehabilitation treatments, psycho-motor re-education and upbringing

◘◘ Organized sports activities, entertainment, work, rest and recreation.

◘◘ Conditions to provide elementary useful work, which is the final aim in

the social care of these persons.

◘◘ Continual engagement of the dependants according to their mental

and physical capacities and strength to enable a higher level of working
ability.

◘◘ Continuous cooperation of the Institution with the dependants’ parents

through the organization of parents’ associations.

◘◘ Continuous adaptation and improvement.

2.4 Operation and Structure of Demir Kapija

The Special institution Demir Kapija is the only institution in Macedonia

that provides “accommodation, care, health care, education, rehabilitation
and vocational therapy for persons with mental disabilities of all catego-
ries” 4. DK is organized in three units:

»» Unit for accommodation, care, health care and rehabilitation of per-

sons with profound mental retardation5 and for persons with combined
disabilities (Unit 1);

»» Unit for accommodation, care, health care and rehabilitation and cor-
rection treatment and educational and working process for persons with
mild and severe intellectual disabilities (known as the ‘Depandans’);

»» Unit for legal, financial, administrative and technical matters and economy.

4
Quote from the Statute of the Special Institution Demir Kapija.
5
. The names of the units are quoted from Special Institution Demir Kapija’s internal documents that
use the term “mental retardation” to describe persons with intellectual disabilities.

CHAPTER 2 DEMIR KAPIJA OUR REALITY 21

 Unit 1 provides care for a total of 226 clients accommodated in two build-
ings: the “old facility” and “new facility”:
At the ‘old facility’, 188 clients reside in six departments (one of which
is for children) which has been renovated in recent years. Despite im-
provements to the physical conditions, the clients are not provided with
organized activities, the number of professional personnel is very low, and
therefore only very basic care is provided.
At the ‘new facility’, 38 clients are accommodated in seven ‘apartments’
(4-6 persons per apartment), which in physical terms provides satisfac-
tory conditions. These clients can participate in various handicraft work-
shops, other work/rehabilitation activities, as well as leisure time activities.
In terms of the general appearance, behavior, acquired habits and skills
of clients, there is a significant difference among the two units described
here, with the clients in the new facility in better condition overall.

22 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 The Depandans is located outside the institution’s main premises, at the
other end of the town. It accommodates a total of 88 clients who are clas-
sified as having good possibilities for independent living, some of whom
are engaged in work at the institution and a small number are employed in
town. Twenty two people live independently in a separate barrack located
within the Depandans and these people independently engage in every-
day activities. Nevertheless, the location of the facility (3 kilometers from
town, surrounded by fields and without inhabited homes in the vicinity)
prevents the social inclusion of these clients.

The sector for administrative, financial and technical affairs and supply
and Economy is a legal service that advises this institution before the au-
thorized institutions in Macedonia and harmonizes the working organiza-
tion and the general acts with the provisions of the Law on Social Protec-
tion, based on the Constitution, the Labour Law, the Law on Institutions
and Collective Agreements.

CHAPTER 2 DEMIR KAPIJA OUR REALITY 23

 2.4.1 The structure of staff in Demir Kapija6

The Special Institution Demir Kapija employs a total of 120 permanent and
75 staff members on temporary basis . The organizational structure of the
institution foresees a total of 35 different positions, four of which are vacant.
In terms of the staff structure, thirteen permanent staff have university-lev-
el education, six of whom are professional personnel (3 special education
teachers, 2 social workers and 1 doctor). 74 staff members have secondary
or college level education and 33 have primary school education. 34 of the
permanent staff (28.3% of the total staff) are employed in the administrative
department.

Staff are employed on permanent or temporary basis:

♦♦ 120 employees (or 61.5%) have contracts on indefinite period, and
♦♦ 75 employees (or 38.5%) have contracts on definite period.

Table1. The structure of stuff in Demir Kapija

No. of staff
Position Total
perm temp.
Director 1 - 1
Head of Unit 3 - 3
Grad. Lawyer 1 - 1
Lawyer 1 - 1
Archivist 1 - 1
Adm.-tech. Secretary 1 - 1
Grad. Social Worker 2 - 2
Grad. Economist 1 - 1
Economist 1 - 1
Chief Accountant - - -
Accountant 2 - 2
Account-liquidator - - -
Cashier - - -
Logistics Officer 2 1 3
Medical Doctor - - -

This review of the structure of the staff of Demir Kapija reflects the situation in the institution on
6.

May 1, 2008, and is based on the information obtained from the institution’s archive

24 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 Defectologist 1 3 4
Head Nurse 1 - 1
Medical Nurse 9 6 15
Lab. Technician - 1 1
Physiotherapist 1 3 4
Caregiver 55 28 83
Educator 6 1 7
Hairdresser - 1 1
Cleaner 5 11 16
Driver - 1 1
Guard 5 - 5
Occupational Therapist 7 1 8
Locksmith 2 1 3
Electrician 1 1 2
Head Cook (Chef) 1 - 1
Cook 3 1 4
Kitchen staff 2 3 5
Laundry staff 5 2 7
Tractor Driver - 1 1
Gardener/farmers - 9 9
Overall Total: 120 75 195

Table 2. Level of education of the stuff in Demir Kapija

Number of staff Level of education Total
Primary Secondary College University
Unit 1 19 42 0 4 65
Unit 2 2 11 6 2 21
Unit 3 12 14 1 7 34
Total: 33 67 7 13 120
Total – percentage: 27.5% 55.8% 5.8% 10.9% 100%

CHAPTER 2 DEMIR KAPIJA OUR REALITY 25

 2.4.2 The Structure of Resident in Special Institution Demir Kapija 7

According to data from May 2008, Demir Kapija accommodates a total of

314 clients, 289 of whom are adults and 25 who are children below the
age of 18. 166 of the clients are men and 148 are women.
Among the children, 12 are 16 years old or older, i.e. they will become
adults by the end of 2010.
A majority of them have spent many years at the institution

Table 3. Age structure of residents in Demir Kapija

Clients Age (in years) Total
0-18 19-25 26- 31-40 41-50 51-60 61- 71- Dna*
30 70
Num- 25 34 30 69 80 50 17 8 1 314
ber
% 8% 10.8% 9.6% 22.0% 25.5% 15.9% 5.4% 2.5% 0.3% 100%
DNA = data not available

Table 4. Gender of residents in Demir Kapija

Male Female
Clients Total
Resident % Residents %
Adults 151 48.1% 138 43.9% 289
Children (up to 18 yrs.) 15 4.8% 10 3.2% 25
Total: 166 52.9% 148 47.1% 314

Demir Kapija offers long-term accommodation to its clients. The time spent
at the institution ranges from several months (the last clients were admitted
to the institution in 2007) to almost 50 years (the clients staying at Demir
Kapija have been there since 1959).
The small number of recently admitted residents is a result of the admin-
istrative prohibition for admission of new clients at Demir Kapija that came
into force in 2000. Since then, only several clients were admitted at Demir
Kapija with a special approval of the Ministry of Labor and Social Policy,
in order to provide care for persons for whom no alternative form of care
could have been provided because of their health condition.

This review of the structure of the clients of Demir Kapija reflects the situation in the institution
7.

on May 1, 2008. The overview was compiled based on the personal files of the clients kept at Demir
Kapija and the national Institute for Development of Social Work.

26 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 Table 5. Duration of Accommodation at Demir Kapija
Duration of accommodation (in yrs)
Clients Total
0-5 6-10 11-20 21-30 31-40 41-50
Adults 7 24 79 97 66 16 289
Children 9 7 9 / / / 25
Total: 16 31 88 97 66 16 314
Total - percentage: 5.1% 9.8% 28.1% 30.9% 21.0% 5.1% 100%

The clients at Demir Kapija have varying degrees of intellectual disabilities

and physical mobility.
Legal capacity status is also varying. Demir Kapija clients are categorized
in four main categories according to the degree of their disability: mild,
moderate, severe and profound. A majority of them are categorized as
“persons with severe degree of intellectual disability”, i.e. 234 or 74.6%;
only six clients are in the “mild” category. In terms of physical mobility, 239
clients are mobile, 33 are semi-mobile and 42 are immobile.

Table 6. Degree and Type of Disability

Type and degree of intellectual disability
Clients Total
Mild Moderate Severe Profound
Adults 6 55 215 13 289
Children / / 19 6 25
Total: 6 55 234 19 314
Total – percentage: 1.9% 17.5% 74.6% 6.0% 100%

Table 7.Overview of Clients in Terms of Mobility

Mobility
Clients Total
Mobile Semi-mobile Immobile
Adults 230 32 27 289
Children 9 1 15 25
Total: 239 33 42 314
Total – percentage: 76.1% 10.5% 13.4% 100%

Among the total number of 289 adult clients, 244 have full legal capacity
and 37 have had their legal capacity revoked. The procedure for revok-
ing the legal capacity of 8 clients is currently underway. Regarding the
guardianship 35 clients had as a responsible guardianship its relatives
until 24 has guardianship by the representatives of the Centers from the
social works

CHAPTER 2 DEMIR KAPIJA OUR REALITY 27

 The clients in Demir kapija has its own properties and pension. The clients
entitled to pensions receive the money on their personal bank accounts.
The funds are used for their individual needs with an approval of their re-
sponsible guardians and/or the staff at the Demir Kapija.

Table 8. Legal Capacity, Guardianship Status and Property/Pension Structure

Clients Legal capacity Guardianship status Property/pension
Yes Proc. No Relative SWC em- Prop- Pension
ployee erty
Adults 244 8 37 35 23 33 8
Children - - 1 - -
Total: 244 8 37 35 24 33 8

Available data indicate that the clients’ communication with their biologi-
cal families is very limited, with the majority having no contacts with their
families. Namely:
◘◘ 99 clients have both parents (82 adults and 17 children) – 31.5%
◘◘ 93 have only one living parent (85 adults and 8 children) – 29.6%
◘◘ 122 do not have living parents (all adults) – 38.9%

Table9. Clients’ Families and Contacts

Contact with biological family
Clients Total
Regular Occasional No contacts
Adults 29 69 191 289
Children 3 5 17 25
Total: 32 74 208 314
Total – percentage: 10.2% 23.6% 66.2% 100%

Clients at Demir Kapija originate from all parts of Macedonia. Most cli-
ents from a single town come from Skopje (91), followed by Prilep (23),
Kumanovo (21), Strumica (15) and Vinica (14). Two clients originate from
other states of former Yugoslavia and three clients are of unknown origin

28 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 2.5. The living conditions of the residents

Regarding the programme for time organization, there are several activi-
ties in which the residents take part together with a defectologist. They
have one creative workshop and one workshop for individual work aimed
at users with lower levels of disability. These programme contents include
various drawing, painting and graphic techniques, as well as modelling
and constructing.

Residents may be visited any time without prior announcement. They are
either visited by their parents or receive telephone calls. Any residents
wishing to make call are provided with a phone by the employees. The
disabled are also allowed to go outside of the institution, with or without
monitoring, depending on their abilities.

To enable residents to get to know the natural environment, picnics are

held on a frequent basis. These events develop in the residents a sense
of co-operation and independence and complement the rehabilitation pro-
cess through providing access to fresh air and exercise. In previous years,
according to the Institution’s reports, holidays were organized abroad, in-
cluding a trip to Bulgaria attended by 30 people from the Institution. A
professional team decides upon which groups can safely go outside of the
Institution for a picnic or a walk according to their capabilities.

The August 2008 report of the Helsinki Committee8 concluded that there
had been a general improvement in living standards at Demir Kapija as
compared to their visit in 2005. However, the Committee reported that con-
ditions were still poor and that standards of hygiene remained unsatisfac-
tory. In particular, the Committee commented on the following: a pervasive
odour of urine; old, torn, and dirty sheets; old and damaged bathrooms
without such basic hygiene products as soap.

8
Report from the Helsinki Committee for the Special Institutiona Demir Kapija, august 2009. http://
www.mhc.org.mk/default-MK.asp?ItemID=0EBF6B41EB83B747B95269A1E7A33D90

CHAPTER 2 DEMIR KAPIJA OUR REALITY 29

 As previously mentioned, the interior of the older facilities had not met the
basic criteria for adequate standards of living. However, the renovated fa-
cilities created a pleasant interior, with new children’s wards being painted
in different colours and furnished with toys.

With regard to the creative workshop is concerned, it is unfortunate that

the apparatus and the tools are out of use due to the lack of some parts;
thus, the employees, as well as the dependants must make do with the
essential aids. On the other hand, all the equipment could be made func-
tional with the exertion of more effort. The pleasant large park is also worth
mentioning, though it was not in use during the Committee’s visit due to
high temperatures.

A physician makes rounds and treats the disorders of the dependants con-
cerning problems in the field of diagnostics, care, prevention and rehabili-
tation. The physician also writes the dependants’ medical history, makes
assessments of dependants’ health, and establishes diagnoses and ther-
apy. There is one physician of this kind who is at the same time a director
of the Institution.

In the 2007 EU Progress Report9 for The Republic of Macedonia, the follow-
ing was stated: the death of 6 patients in the Special Institution for disabled
persons in Demir Kapija at the beginning of 2007 imposes the urgent need
for improvement of the institutional care of socially vulnerable groups and
persons with special needs, as well as further development of alternative
services at local level.

The 2009 EU Progress Report10 for the Republic of Macedonia noted minor
progress in the cooperation of all stakeholders in the country in the process
of deinstitutionalization. However, it concluded that disabled persons con-
tinue to live in poor conditions in the Institution.

9
The 2009 EU Progress Report;
http://ec.europa.eu/enlargement/pdf/key_documents/2007/nov/fyrom_progress_reports_en.pdf
10
The 2009 EU Progress Report;
http://ec.europa.eu/enlargement/pdf/key_documents/2007/nov/fyrom_progress_reports_en.pdf

30 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 2.5.1. Mortality in the Special Institution Demir Kapija

Ten deaths of residents of the Special Institute of Demir Kapija were

recorded in 2005, at the ages of 53, 38, 32, 29, 24, 19, 17, and 4. The di-
agnoses Insufitientio Cardiorespiratorica, in three cases followed by TBC,
was stated as the most frequent reason for death.

Eighteen deaths were recorded in 2006: at the ages of 67, 63, 58, 55,
54, 52, 51, 41, 40, 27, 21, 19, and 15. Insufitientio Cardiorespiratorica,
TBC, Abdomen acuta, HTA, CMP and Myocariopatia chr.cor decopensat-
um edema pulmonum are stated as the most frequent reasons for death.

In the following year, sixteen deaths were recorded, at the ages of 81,
66, 58, 57, 54, 51, 50, 44, 41, 40, 33, 26, 25, 24, and 20. The abovemen-
tioned diagnoses are also stated as main reasons of deaths for 2007.

The representatives of the Helsinki Committee3 were given an insight into

the medical documentation of evidence pertaining to those suffering from
tuberculoses since 2005 onwards. It was stated that:
◘◘ in 2005 there were 12 recorded cases of diseased, 4 deceased, the
others cured, with one case transferred in 2006.
◘◘ In 2006 there were 6 recorded cases of diseased, 1 deceased in
2006, and one more in 2007, the rest of them cured.
◘◘ In 2007 there were 6 recorded cases of diseased, except for one
person who contracted the disease in 2006 and died in 2007; the rest
were cured.
◘◘ In 2008 there were 4 recorded cases of diseased, of which 2 per-
sons died.

CHAPTER 2 DEMIR KAPIJA OUR REALITY 31

WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
 CHAPTER THIRD
3
The story about the numbers v.s. needs

3.1 Numbers in correlation with needs of the final users

Even is not understandable to be discussing about the finance when we

talk about the disability, but only about the rights … in this case we will
make some exception. Not from view of the truth that the same numbers
are barring, but this time that information we will give them “bare”, those
one that we got from the state and private institutions, except from the
Special Institution Demir Kapija who are in silence when that question is
on the agenda.

In more expensive institutions, the service providers may expect that by

redirecting of users with disability toward better services in the community,
the expenses will lower, while the conditions will be of the same or better
quality; the community will gain more profitability in this case. The accom-
modation for dependants with higher level of disability in more expensive
institutions will cost as same as the accommodation in some of the com-
munity facilities, but the quality will be better and the profitability for the
community will be greater.

But, what’s the position like concerning numbers in the Special Instituion
Demir Kapija? How much this institution is costing Macedonia versus the
service is giving?

GLAVA 3 PRIKAZNA ZA BROJKITE V.S. POTREBITE 33

 3.2 The economic, technological and functional development
In the period between 1961 and 1963, 2.5 acres of orchard and 0.5 acres
of vineyard were planted. The Supplies Department increased until 1969.
In 1970, the Institution planted an orchard of almost 7.5 acres and a vine-
yard of 17 acres. This was an initiative of the Institution, and 16,000,000
Dinars were spent.

In September, 1968 a new development program was adopted which en-

tailed a twofold increase in the accommodation capacities for residents,
the creation and employment of professional staff, a new organization set-
ting in the Institution, in order to organize the work in an appropriate way
aligned with contemporary concepts in the country and abroad. Based on
this program and in cooperation with the Institution on Social Issues Sko-
pje, in October 1968 a new investment plan with a complete technical doc-
umentation for opening of the Annex was drawn up, including the building
of a new administration office, a kitchen and a laundry with a capacity for
500 dependants, as well as other facilities. The plan was adopted by the
State Self-governed interest community of social care (in 1968 - A State
fund for Social Financing), all vital facilities were realized on time.

The Council of the municipality of Negotino, as well as the agricultural and

industrial combine Povardarie, Negotino made their contributions, too.
With Decision No.
01-31 of October 10th, 1968, the Working Council of the agricultural and
industrial combine (AIC) Povardarie, Negotino, gave land and facilities
in the amount of 51,304,417 former Dinars to the Institute in the region of
Dolna Ergela in the area of Demir Kapija for permanent use and manage-
ment. The Municipality council, further on, with Decision No. 01-2067/2 of
November 25, 1968 overtook all annuities for the vineyard plantations from
AIC Povardarie, Negotino, for an amount of 17,090,487 former Dinars.

In May, 1969 the building of the fence around the Depandans and the
Economy made of concrete and wicker network was finished. It was
built by the building cooperative Sloga from Negotino for an amount of
2,800,000 former Dinars. The fence at the Institution was constructed by
Metalka from Kavadarci for an amount of 1,500,000 former Dinars.

In August, 1969 an erection of a 10 kw long-distance power line was fin-

34 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 ished, an extension from the long distance power line Doshnica, Demir
Kapija to the Annex, and an extension to the Institution.

Both the Annex and the Institution erected their own transformer stations
simultaneously, making the Special Institution self-supporting as far as
regular electricity procurement is concerned. The project for the long-dis-
tance power line was carried out by the planning office from Veles, Iskra
from Strumica being a main constructor for an amount of 5,500,000 former
Dinars.

In October 1969, the installing enterprise Toplovod from Skopje installed

central water heating in the Annex for an amount of 15,000,000 former
Dinars.

On November 1st, 1969 the erection of the petroleum station in the An-
nex with a capacity of 50,000 l was finished. The erection was carried out
by the building cooperative Sloga, Negotino for an amount of 9,432,198,
former Dinars. In 1969, a pump station with a thrust line was built on the
Boshavica river, serving the purpose of the Institution water procurement.
The organization Penelishko Pole built it for an amount of 7,500,000 for-
mer Dinars.

On May 30, 1970 the Annex of the Institution was put in operation. It was
built in the area called Dolna Ergela, 2 km away from Demir Kapija, and
3 km away from the Institution. The facility was erected by the building
enterprise Udarnik from Skopje, for an amount of 119,879,778 former Di-
nars. The following building activities were carried out: an administration
building and a surgery, a pavilion for mobile males, a pavilion for females,
a pavilion-building for immobile children and youth, a doorman’s booth,
asphalt paths and a park, as well as a playground, walking paths, wire
fence, a pigsty, a chicken coop, a warehouse and a garage.

In 1970, the Institution planted an orchard of 7.5 acres, and a vineyard of

17 acres, everything being directed by the Institute itself and an amount of
16,000,000 former Dinars was spent.

In 1971, the building of the kitchen with a working room for the administra-
tion and a laundry was finished. The work was carried out by Granit Sko-
pje, with Negotino as a second building site for an amount of 98,606,483
former Dinars.

CHAPTER 3: THE STORY ABOUT NUMBERS V.S. NEEDS 35

 In 1971, the installing enterprise Edinstvo, Skopje finished the installation
of central water heating in the laundry and the administration building for
an amount of 6,768,995 former Dinars.

In 1971, a house was installed in the Annex serving the purpose of work-
shops for the dependants (for sewing, knitting, metal works etc.). The in-
stalling house was granted by YNA (military garrison from Skopje). The
foundations, the de-installation and the transport from Skopje to Demir
Kapija were carried out by Pepelishko Pole from Negotino for an amount
of 15,000,000 former Dinars.

In 1971, the path from the Institution to the Annex was asphalted for an
amount of 41,000,000 former Dinars.

In 1971, a building of water supply wells with a capacity enough to procure

the Annex and the Institution with water commenced at the Boshavica riv-
er, in the area of Dolna Ergela. The building was carried out by Penelishko
Pole, Negotino for an amount of 24,000,000 former Dinars.

In 1974, a drying place costing 6, 500.000 former Dinars was built.

In 1976, an adaptation of the basement and the left tract of the Institution
were made. The adaptation was made by the building enterprise Sloga
Negotino for an amount of 21,000,000 former Dinars .

In 1976, a water reservoir was built for connecting the Annex and the Spe-
cial Institution. All building, trade and installing tasks were carried out by
Penelishko Pole for an amount of 33,000,000 former Dinars.

In 1976, a facility aimed at a dinning room and a workshop was construct-

ed in the Annex of the Institution. The facility was erected by the building
enterprise Granit from Skopje with Negotino as a second constructor, for
an amount of 93,000,000 former Dinars.

In 1977, a new surgery was erected by Treska Skopje, the Kavadarci plant
and Pepelishko Pole from Negotino for an amount of 45,000,000 former
Dinars.

36 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 In 1977, a reconstruction of the heating device (pipes) in the Institution
was carried out in the first and second building. The work was performed
by the installing enterprise Greenje, Skopje, for an amount of 34,000,000
former Dinars.

In 1977, an aggregate of 180 KBA was installed in the Institution. The ag-
gregate was procured and the installation of the electrometallurgy equip-
ment was made by Elektromakedonija, Skopje for an amount of 51,000,000
former Dinars, while the erection of the facilities was carried out by Pepel-
ishko Pole, Negotino for an amount of 17,000,000 former Dinars.

In 1978, the building of a new accommodation facility with a capacity of

200 beds for persons with severe mental disabilities was completed. The
building was carried out by the Pepelishko Pole, Negotino for an amount
of 257,000,000 former Dinars.

In 1978, a porch for 100 immobile persons was built by Pepelishko Pole
for an amount of 101,000,000 former Dinars.

As far as donations are concerned, we have obtained the following data:

for 2007/2008 the Institution received a EUR 12,000 donation from the
state president Crvenkovski aimed at building a playground.

EUR 15,000 from the wine vault Kula. The money was used for current
needs, procurement of hygiene materials, etc.
From the Red Cross from they receive clothes donation.
The Belgian Embassy donated assets for the renovation of one of the
facilities.
EUR 40,000 donated by Cosmofon for the park near the facility.
MKD 13,000 deposited monthly by OKTA to the Institute aimed at current
needs.

The main source of finance is the state budget.

CHAPTER 3: THE STORY ABOUT NUMBERS V.S. NEEDS 37

 3.3 facsimile

Facsimile from Ministry from Labour ans Social Policy

38 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 Facsimile from T - Mobile

CHAPTER 3: THE STORY ABOUT NUMBERS V.S. NEEDS 39

 Facsimile from EVN

40 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 CHAPTER FOURTH
4
From the camera objective and from reality

The forth chapter of this publication is not time determinate. Is mixing with
the pest time and is fulfilling the emptiness among them.

However, the followed pages are not eclectic connection of scatter data
but attempt to get an answer of the most objections – in correlation with
the truth and covering the reality.

In the other part are present the lives from the eye of the photography.
One photo – many words! – And all philo sophizing for the need, the big
care and it own institutionalizations are missing their meaning.

GLAVA 4: OD OKOTO NA KAMERATA I REALNOSTA 41

 4.1. Echo

42 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 43
44 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
 4.2. From the camera objective 11

11
The images are from the exebition “ We are one world” held on the 3rd of December 2001.
CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 45
46 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 47
48 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY
CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 49
 4.3 The begining of the era - deinstitutionalisation of
Special Institution Demir kapija

The deinstitutionalization process in the Republic of Macedonia

was initiated in the mid 1990s with the establishment of the first
Day Centre for Adult Intellectually Disabled Persons located in Kriva
Palanka.

However, the real steps towards deinstitutionalization were made in

2000 when the Memorandum of Cooperation was signed between
the Ministry of Labor and Social Policy, UNICEF and the World Health
Organization, which brought into force the administrative prohibition
for accepting new persons with intellectual disabilities at the Special
Institution Demir Kapija.

In 2007, the first National Strategy on Deinstitutionalization in the

Republic of Macedonia (2008-2018) was prepared. Even in R.
Macedonian exist 4 big institutional care systems the Government
of Macedonia access to the process of deinstitutionalization of the
only long stay social welfare institution for people with intellectual
disabilities, the deinstitutionalization of Special Institution Demir
Kapija, by its transformation into a community-based centre for pro-
viding services to people with intellectually disability.

In the spirit of the European Integration and political commitment

and will including the support from the civic society in 2008 the Gov-
ernment of Macedonia make an agreement with the

The first four residents were visited by the Prime Minister and the
Minister of Labor and Social Policy in their new home in Skopje,
after having lived for years, and in some cases decades, at the Spe-
cial Institution Demir Kapija. The Prime Minister, Nikola Gruevski, of-
fering his full support for this project stated ‘I am very glad that I was
able to welcome our new neighbors and very happy to have felt their
happiness being in their own home. This is the first step of imple-
menting positive foreign experiences from other European countries
in building a just and inclusive society in Macedonia. From the end
of 2008 till today 28 people with intelctual disability are stated in
community based services.

50 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

 The client from Demir Kapija with the Government representatives in the new home

The clients from Demir Kapija on a debate with the president candidates 2009

CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 51

 Contents

INTRODUCTION........................................................................ 1
CHAPTER 1: Projection of the system ......................... 3
1.1 Institutional protection in the RM ...................................... 3
1.2 Developmental stages in the social protection
and rehabilitation of mentally and physically
people with disability ............................................................. 4
1.3 New winds - deintitucionalization ...................................... 10

CHAPTER 2: Demir Kapija - our reality......................... 13

2.1 The Growth of Demir Kapija ................................................ 13
2.2 Modernization of the premises, equipment
and aids in the Institution ................................................... 18
2.3 The structure of the Special Institution
of Demir Kapija .................................................................... 20
2.4 The operation and structure of the Special Institution
of Demir Kapija .................................................................... 21
2.5 The living condititon of the residents ................................ 29

CHAPTER 3: The story about the

numbers v.s. needs .................................... 33
3.1 Numbers in correlation with needs of the final users....... 33
3.2 The economic, technological and functional
development ..................................................................... 34
3.3 Facsimile .............................................................................. 38

CHAPTER 4: From the camera objective

and from reality ............................................ 41
4.1 Echo........................................................................................ 42
4.2 From the camera objective ................................................ 50

CONTENTS .................................................................................. 52

52 WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY