white book (de)institutionalisation our reality

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WHITE BOOK

POLIO PLUS

(De) Institutionalization - Our Reality

Skopje, 2010

Cicero Edition

movement against disability


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Title:White Book (De) Institucionalization - our reality

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

Publisher:Polio Plus - movement agaisnt disability

For the editor:Zvonko Shavreski

Translation:

Gulnihal Ismail

Nomber of copies

500

Printing:

Jugoreklam - Skopje


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IntroductionDisability has existed throughout human history and modern science hasfurther dened 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 socialwhile

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 relevantinstitutions 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.

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WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY

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 butmay 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 signicant 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 scientic

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 Kapijaan

institution with fty years of experience in the rehabilitation of individualswith mild, severe and profound disability.

Polio Plus,

movement against disability

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1C H a P T E r F I r S T

1.1 Institutional protection in the Republic o Macedonia

The problems of developmentally disabled children1 have long since

ceased to be regarded as the problems of individuals: they have acquired

a signicant 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 scientic and social attention,

increased nancial support and legal regulation, an expanding network

of various institutions for these children, the engagement of a greater

number of expert staff in the eld of protection and rehabilitation, and the

strengthening of the international movement for the integration of thesechildren within the community and the normalization of their relations with

society.

Historically, the Church has had a signicant inuence on the social life of

the population in Macedonia and this institution also played a role in the

The Projection of the System

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 andEducation of Disabled Persons in the Republic of Macedonia, 19491999, Skopje, 2001.

3GLAVA 1: PROEKCIJA NA SISTEMOT


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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 thiseld shows that some individuals with disabilities were accepted in a large

number of monasteries throughout Macedoniafor 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 rst institution in the Republic of Macedonia.

The absence of pre-existing institutional forms of protection and the lack

of qualied staff and practical experience in the eld of protection and re-

habilitation in Macedonia prior to 1945 caused enormous difculties once

attempts were made to overcome problems that had been neglected for

centuries.

Since 1945, progress in the social protection and rehabilitation of the

mentally and physically disabled has been inuenced 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 rst 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 moresuccessfully 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 Macedonias liberation in 1945 establishedrelatively promising conditions for the permanent development of protec-

tion and rehabilitation.

1.2 Developmentl stges in the socil potection nd ehbilittion ofmentlly nd physiclly people with disbility

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GLAVA 1: PROEKCIJA NA SISTEMOT 5

Following a wide-ranging review of this issue by the Republics authorities,

the rst institution for the disabled children was opened in 1949. This was

the outcome of a new attitude in a new societyan attitude which viewed

disabled people as equal to other citizens and capable, depending on their

abilities, of being rehabilitated and of contributing to social developmentand 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 signicant 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 nancial 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 mostmodern theoretical and practical ndings in defectology and other scien-

tic 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 ve stages:


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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 tohelp 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 specic manner of treatment required in various stages of rehabilita-tion. This period saw a strengthening of the nancial 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 Republics body for social care. Takinginto consideration the latest professional and scientic 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

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GLAVA 1: PROEKCIJA NA SISTEMOT

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 rst 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 eld 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 (Ofcial

Gazette of FNRJ, No. 5/60); the law on the professional rehabilitation of

children of insurance-holders (Ofcial Gazette of FNRJ No. 5 /60); Rulesand regulations for protective workshops (Ofcial Gazette no 3/61); the

Law on Special Schools in the Peoples Republic of Macedonia (Ofcial

Gazette of RM No. 11/61) and other regulations in the eld 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).

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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, 19491999, Skopje, 2001


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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 othersuch 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 signi-

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 inrmary.

Stage ourencompasses the period from 1974 to 1990. This was a period

of qualitative improvement in the protection and rehabilitation of childrenwith hindered development. With the establishment of new conditions and

the formation of self-governing communities of common interest in the

elds 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 nancial 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 trainingand improvement of qualied 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 ve encompasses the period from 1990 to 1999, a stormy decade

in the nations 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

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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 full their function normally. We would like to emphasize our grati-

tude to the many donorsfriendly nations and charity organisationswho

helped nancially with equipment and food in this period.

This period saw the opening of the Department for Defectology Studies in

the University of Skopjea 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.

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The process of reforming the social care system in Macedonia commenced

in the mid-1990s with the establishment of the rst social organization in

the community, a day-care centre for adults with mental disabilities in KrivaPalanka. 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 nancial support to

NGOs managing day-care centres for adults with mental disabilities.

However, the rst concrete measures towards deinstitutionalization weretaken 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 wherebydeinstitutionalization 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

1.3 New winds - Deinstituionalisation

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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 nd-

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 rst national Strategy for the deinstitu-

tionalization of the social care system in Macedonia was designed for the

period 20082018. 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 rst 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 difculties 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.

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WHITE BOOK; (DE) INSTITUTIONALIZATION - OUR REALITY12


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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, speakingand 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 profoundcases 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

C H A P T E R T WO

Demir Kapia - our realit

2

2.1 The Growth o Demir Kapija

13GLAVA 2 DEMIR KAPIJA NA[A REALNOST


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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 childrens

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

childrens 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 nancing due to its institutional type.

The Council also concluded that the institution would commence working

on October 1, 1958.

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CHAPTER 2 DEMIR KAPIJA OUR REALITY 15


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2.2. Modernization o the premises, equipmentand aids in the Institution

The development of the Special Institution in Demir Kapija followed ve

stages:

The rst stage of the Institutions development comprises the period be-tween 1958 and 1968. This period was characterised by difculties in allspheres since its opening and its beginnings with the previous organiza-tion. Until October 20 1958, the facilities of the Institution had previouslybeen in the ownership of the Archaeological Museum of the Federal Re-public of Macedonia and the same facility was built to serve the purpose ofa 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 livingin small bedrooms, while the living room was organized in one hall only.

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CHAPTER 2 DEMIR KAPIJA 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 Institutes development comprises the period be-tween 1968 and 1975, characterised by efforts to turn the organizationfrom a shelter into a modern institution.The invested nances were used to create a material and a special basefor new living conditions in the Institution. A new organization was set upto provide functioning in an appropriate way, as well as to obtain qualityimprovements in the dependants protection and the treatment for childrenwith 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 childrenwith profound intellectual disability situated in Demir Kapija.A ward for the rehabilitation, treatment and upbringing of severelydisabled 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 Institutes 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 Institutions extension and better equip-

ment. For obtaining this objective, a developing program was drawn up forthe period 1975-1980. Efcient and successful realization of the program

enabled continuous annual increase in accommodation capacity.

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Before the expiry of the 5-year plan, the Institution provided the planned

capacities for 450 dependants. Meanwhile, the Institution strengthened

nancially, 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 specializationat 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 nances.

The fth stage of the Institutes development comprises the period 1994-

1999. The Institution invested maximum efforts to improve itself in every

regard. The Institution had previously been nancially supported by SIZ

for social protection. Nowadays, nancial assets are provided by the Min-

istry of Labour and Social Policy and the Government.

2.3. Description O The Institution Demir Kapija

2.3.1 Objectives and tasks of the Institution

The Institutions tasks are to provide the following:

Accommodation of persons with mental disabilities.

Care of dependants with profound mental disabilities, particularly ofthose who are immobile and cannot maintain hygiene.

20

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 ofwho work in agriculture.


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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 nal aim inthe social care of these persons.

Continual engagement of the dependants according to their mentaland physical capacities and strength to enable a higher level of workingability.

Continuous cooperation of the Institution with the dependants parentsthrough the organization of parents associations.

Continuous adaptation and improvement.

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2.4 Operation and Structure o 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, nancial, 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 Kapijas internal documents that

use the term mental retardation to describe persons with intellectual disabilities.


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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 withorganized 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 signicant difference among the two units describedhere, with the clients in the new facility in better condition overall.

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The Depandans is located outside the institutions main premises, at the

other end of the town. It accommodates a total of 88 clients who are clas-

sied 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 locatedwithin the Depandans and these people independently engage in every-

day activities. Nevertheless, the location of the facility (3 kilometers from

town, surrounded by elds and without inhabited homes in the vicinity)

prevents the social inclusion of these clients.

The sector for administrative, nancial 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.

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The Special Institution Demir Kapija employs a total of 120 permanent and

75 staff members on temporary basis . The organizational structure of theinstitution 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 educationteachers, 2 social workers and 1 doctor). 74 staff members have secondaryor college level education and 33 have primary school education. 34 of thepermanent staff (28.3% of the total staff) are employed in the administrativedepartment.

Staff are employed on permanent or temporary basis:

120 employees (or 61.5%) have contracts on indenite period, and75 employees (or 38.5%) have contracts on denite period.

Table1. The structure of stuff in Demir Kapija

PositionNo. of staff

Totalperm 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 - 1Economist 1 - 1

Chief Accountant - - -

Accountant 2 - 2

Account-liquidator - - -

Cashier - - -

Logistics Ofcer 2 1 3

Medical Doctor - - -

2.4.1 The structure o sta in Demir Kapija6

6. This review of the structure of the staff of Demir Kapija reects the situation in the institution onMay 1, 2008, and is based on the information obtained from the institutions archive

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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%

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2.4.2 The Structure o Resident in Special Institution Demir Kapia 7

7. This review of the structure of the clients of Demir Kapija reects the situation in the institutionon May 1, 2008. The overview was compiled based on the personal les of the clients kept at DemirKapija and the national Institute for Development of Social Work.

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 theage 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-

30

31-40 41-50 51-60 61-

70

71- Dna*

Num-

ber

25 34 30 69 80 50 17 8 1 314

% 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

ClientsMale Female

TotalResident % 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 admittedto 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.

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Table 5. Duration of Accommodation at Demir Kapija

ClientsDuration of accommodation (in yrs)

Total0-5 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

ClientsType and degree of intellectual disability

TotalMild 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

ClientsMobility

TotalMobile 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

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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 capacit Guardianship status Propert/pension

Yes Proc. No Relative SWC em-

ployee

Prop-

erty

Pension

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 ContactsClients

Contact with biological familyTotal

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

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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 aimedat 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 Institutions 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.

2.5. The living conditions of the residents

8 Report from the Helsinki Committee for the Special Institutiona Demir Kapija, august 2009. http://

www.mhc.org.mk/default-MK.asp?ItemID=0EBF6B41EB83B747B95269A1E7A33D90

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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 childrens 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 Committees visit due to

high temperatures.

A physician makes rounds and treats the disorders of the dependants con-

cerning problems in the eld 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 disabledpersons 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 minorprogress 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.

9The 2009 EU Progress Report;http://ec.europa.eu/enlargement/pdf/key_documents/2007/nov/fyrom_progress_reports_en.pdf10The 2009 EU Progress Report;http://ec.europa.eu/enlargement/pdf/key_documents/2007/nov/fyrom_progress_reports_en.pdf

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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 Insutientio 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. Insutientio 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.

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3C H A P T E R T H I R D

The story about the numbers v.s. needs

3.1 Numbers in correlation with needs of the nal users

Even is not understandable to be discussing about the nance 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 protability 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 protability for the

community will be greater.

But, whats 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


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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 ofce, 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 andindustrial 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 fromAIC 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 nished. 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 n-

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

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 ofce 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 nished. 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 doormans booth,

asphalt paths and a park, as well as a playground, walking paths, wirefence, 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 nished. The work was carried out by Granit Sko-

pje, with Negotino as a second building site for an amount of 98,606,483former Dinars.

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In 1971, the installing enterprise Edinstvo, Skopje nished 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 Institutionwere 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.

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In 1977, a reconstruction of the heating device (pipes) in the Institution

was carried out in the rst 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 currentneeds.

The main source of nance is the state budget.

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3.3 fACSIMILE

facsimile rom Ministry rom Labour ans Social Policy

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facsimile rom T - Mobile

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facsimile rom EVN

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4C H A P T E R f O U R T H

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 fullling 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


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4.1. Echo

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CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY 43


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CHAPTER 4: FROM THE CAMERA OBJECTIVE AND OUR REALITY

4.2. From the camera objective 11

45

11The images are from the exebition We are one world held on the 3rd of December 2001.


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4.3 The begining o the era - deinstitutionalisation oSpecial Institution Demir kapija

The deinstitutionalization process in the Republic of Macedoniawas initiated in the mid 1990s with the establishment of the rstDay Centre for Adult Intellectually Disabled Persons located in KrivaPalanka.

However, the real steps towards deinstitutionalization were made in2000 when the Memorandum of Cooperation was signed betweenthe Ministry of Labor and Social Policy, UNICEF and the World Health

Organization, which brought into force the administrative prohibitionfor accepting new persons with intellectual disabilities at the SpecialInstitution Demir Kapija.

In 2007, the rst National Strategy on Deinstitutionalization in theRepublic of Macedonia (2008-2018) was prepared. Even in R.Macedonian exist 4 big institutional care systems the Governmentof Macedonia access to the process of deinstitutionalization of the

only long stay social welfare institution for people with intellectualdisabilities, the deinstitutionalization of Special Institution DemirKapija, 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 commitmentand will including the support from the civic society in 2008 the Gov-ernment of Macedonia make an agreement with the

The rst four residents were visited by the Prime Minister and theMinister 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 wasable to welcome our new neighbors and very happy to have felt theirhappiness being in their own home. This is the rst step of imple-

menting positive foreign experiences from other European countriesin building a just and inclusive society in Macedonia. From the endof 2008 till today 28 people with intelctual disability are stated incommunity based services.

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

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


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INTRODUCTION........................................................................ 1

CHAPTER 1: PROjECTION Of THE SySTEM......................... 3

1.1 Institutional protection in the RM ...................................... 3

1.2 Developmental stages in the social protectionand rehabilitation o mentally and physically

people with disability ............................................................. 4

1.3 New winds - deintitucionalization ...................................... 10

CHAPTER 2: DEMIR KAPIjA - OUR REALITy......................... 13

2.1 The Growth o Demir Kapia................................................ 13

2.2 Modernization o the premises, equipmentand aids in the Institution................................................... 18

2.3 The structure o the Special Institutiono Demir Kapia.................................................................... 20

2.4 The operation and structure o the Special Institution

o Demir Kapia.................................................................... 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 nal users....... 33

3.2 The economic, technological and unctional

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

Contents

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white book (de)institutionalisation our reality

Documents