Educational policies and practical implications for children with intellectual disability in Republic of Macedonia Текст научной статьи по специальности «Науки об образовании»

EDUCATIONAL POLICIES AND PRACTICAL IMPLICATIONS FOR CHILDREN WITH INTELLECTUAL DISABILITY IN REPUBLIC OF MACEDONIA

Dr. Aleksandra Karovska Ristovska, Institute of Special Education and Rehabilitation, Faculty of Philosophy, University Ss. Cyril and Methodius, Skopje, Macedonia E-mail: [email protected] Dr. Biljana Karovska Andonovska, Military Academy "General Mihailo Apostolski", Skopje, Macedonia

E-mail: [email protected] Dr. Nastasha Stanojkovska Trajkovska, Institute of Special Education and Rehabilitation, Faculty of Philosophy,

University Ss. Cyril and Methodius, Skopje, Macedonia E-mail: [email protected] Dr. Sofija Georgievska, Institute of Social Work and Social Policy, Faculty of Philosophy, University Ss. Cyril

and Methodius, Skopje, Macedonia E-mail: [email protected]

A R T I C L E I N F O

Original Research Received: November, 10.2017. Revised: December, 03.2017. Accepted: December, 06.2017. doi:10.5937/IJCRSEE1702027K

UDK

376.014(497.7) 376.1-056.3-053.2(497.7)

Keywords:

special education,

inclusive education,

educational policy for persons with

disabilities,

quality of life.

A B S T R A C T

Educational policy for children with intellectual disability in Republic of Macedonia is not always consistent with the practical implications. The subject of this research was to gain an insight into the current condition of the persons with intellectual disabilities in Macedonia, before all an insight into the barriers that they are facing in their attempts to access educational information and services. This was done through conducting a qualitative (desk-top analyses of the national legislations; semi-structured interviews with parents of persons with intellectual disabilities and focus groups with relevant stakeholders) and a quantitative research (quality of life research for the disabled persons). In the research a total number of 213 examinees were included. As in many other cases, and in many other countries, policy and practice are not always coherent. Legislation in the area of education in our country has to be modified and accommodated to the needs of the persons with disabilities and their parents or care-givers. The final conclusion from our research is that the persons with ID are still on the margins of society, and they lead everyday battles to prove that their needs must be taken into consideration in context of their human rights. Although awareness for the importance of the rightful treatment of this problem is not on a satisfactory level, still we can notice a shift in perception and liberation of prejudice.

© 2017 IJCRSEE. All rights reserved.

1. INTRODUCTION

Organized social care for the disabled persons in Macedonia, in particular intellectually disabled, realized through the protection, education and rehabilitation started after World War II (Ajdinski, 2000). In the last few decades there was a major shift of attitudes

Corresponding Author

Dr. Aleksandra Karovska Ristovska, University Ss. Cyril and Methodius, Skopje, Macedonia, E-mail:

[email protected] @©@©

This work is licensed under a Creative Commons Attribution - NonCommercial - NoDerivs 4.0. The article is published with Open Access at www.ijcrsee.com

and conceptual paradigms which are the base for inclusion for the persons with disabilities, and a transition from the medical to the functional model that focuses on the rights, equal possibilities and total participation of the persons with disabilities. The Convention on the Rights of Persons with Disabilities was adopted on 13 December 2006 (UN, 2016). The UNCRPD raises important issues that governments need to address when developing policies to realize equality, support, inclusion, and protection for people with intellectual disability (Carney, 2013). The countries from the Central East Europe started many system reforms in the period that followed. Macedonia ratified the Convention on 29th of December 2011 (UNTC, 2011). Although there are policy changes related to the enhancement of

educational opportunities for the intellectually disabled, the practices sometimes vary from the policies.

Subject of this research was to gain an insight into the current condition of the persons with intellectual disabilities (ID) in Macedonia, before all an insight into the barriers that they are facing in their attempts to access educational information and services. This was done through conducting: a desk-top analyses of the national legislations; a quality of life research for the disabled persons; semi-structured interviews with parents of persons with intellectual disabilities and focus groups with relevant stakeholders. A total number of 213 examinees were included in the research of which: 46 parents (36 for the semi-structured interviews, 10 for the focus group), 143 persons with disabilities and 30 professionals that work directly with persons with disabilities, or work in governmental or non-governmental institutions (for the focus groups).

2. MATERIALS AND METHODS

This study noted the current state in education and the barriers faced by the persons with disabilities during their attempts to access information and services. The research goal was to improve the quality of life of the persons with intellectual disabilities by stating concise recommendations for the improvement of the access to information and services. These recommendations are closely related to the shortcomings in the current legislations and practice and it is expected that they will lead to development of positive policies for the persons with disabilities in general. The research questions were oriented towards:

1. Analyses of national documents concerning the education options for the persons with intellectual disability; and

2. Access to different education options (special education and inclusive education);

The research had a qualitative and quantitative character. Testing of validity and reliability was done with the strategy of triangulation. According to Jakob (2001) by combining multiple observers, theories, methods, and empirical materials, researchers can hope to overcome the weakness or intrinsic biases and the problems that come from single-method, single-observer, single-theory studies. Often the purpose of triangulation in specific contexts is to obtain confirmation of findings through convergence of different perspectives. The triangulation was based on the

multiple sources of information, triangulation of methods (quantitative and qualitative), and triangulation of researchers (researchers from different fields related to the persons with disabilities).

Table 1. Techniques and instruments used in the research

Qualitative aspects

of research_

Re s earcii techniqu es Re s earcii instruments

A) Document analyses_

Desktop analyses

E) Semi-structured interview

Semi-structured interview guide

C) Focus groups

Focus group protocol

Quantitative aspects of research_

D) Survey

Standardized inquiry for quality of life assessment (WHOQOL)_

A) Document analyses. Within the desktop analyses we used primary sources (related to national laws, by-laws, reports), but we also used secondary sources as an addition to the primary with the purpose to gain and insight in the practical implications of the education laws.

B) Semi-structured interview. Thirty-six examinees were interviewed with the semi-structured interviews out of which 32 (89%) were parents of persons with intellectual disability and 4 (11%) were caregivers. Regarding gender, 23 of the examinees (77%) were female, while 7 (23%) were male. The research was conducted in rural and urban areas from different parts of the state. The interviews were conducted in mainstream inclusive schools, special primary schools, day-care centers, a secondary state school for education and rehabilitation and caregiver families.

They gave an insight into the objective situation, coming from their perception of the current policies in the area of education, of the service providers and the end users of those services. They shared their positive and negative experiences.

C) Focus groups. Four focus groups were organized with 40 representatives (I. professionals that are directly involved in the work with persons with disabilities from special institutions and special primary and secondary schools, mainstream primary and secondary inclusive schools, preschool institutions, day-care centers and one center for mental health; II. parents of persons with in-

tellectual disabilities; III. representatives from the NGO sector or representatives of associations that work with persons with an intellectual disability; IV. professionals that work in the area of policy making for persons with an intellectual disability). Based on the qualitative data which was collected, a qualitative analysis was used with the purpose of defining the concept which prevailed.

D) Survey. For the purpose of the survey we used the standardized questioner for quality of life assessment from the World Health Organization (WHOQOL). The quantitative analyses gave us an insight in the objective indicators for the approach to information and services. The questioner was adjusted to the intellectual capacity of the disabled persons. The survey was conducted on 137 persons with disabilities. The questioner is standardized and the manner of data interpretation is defined. The quality of life was examined in 7 domains: material wellbeing, health, productivity, intimacy, safety, societal status and emotional wellbeing.

3. RESULTS

The results will be shown in three subsections: I. desktop analyses; II. analyses of the practical implications of the legislation done through the semi structured interviews and focus groups; and III. quality of life analyses. The results chapter is merged with the discussions of results chapter so that relevant researches and studies are shown in a combination with the results.

I. Desktop analyses

The educational system for children with special needs in Macedonia is organized in three basic segments:

- Special education in special schools;

- Special education in separate classrooms in mainstream schools;

- Mainstream education in the same class with other students.

This type of education is similar to the countries in the region like Slovenia (Schmidt and Brown, 2015), Serbia (Babic, 2017), Croatia (European Agency, 2017) and others.

The decision for the educational placement is made by the parents. During the enrolment of the students with SEN in the regular school the parents don't have an obligation to submit a finding, opinion and assessment of the student's specific needs. There is a large

number of children with developmental disabilities which are not covered with education and they usually stay at home. There is no national registry, because of which there isn't any precise data about the number of these persons.

Education of children and youth with special needs is an integral part of the unique educational system in Macedonia. The state is committed to the inclusion of all persons in all areas of life regardless of the type and degree of the disability. This tendency implies inclusion in all educational levels.

The actual conceptual placement of the education for students with special needs is regulated with the Law for primary education and the Law for secondary education (1995).

According to article 6 from the Law for primary education (2008) special conditions are provided for the students with special needs with the purpose of gaining primary education in the regular and special primary schools. These students have a right to individual assistance with the purpose of acquisition of primary education. Parents have a right to enroll their children in regular primary schools. There are also special primary schools and special classes in the regular schools for students with intellectual disabilities and autism.

Our system is based on the idea that inclusive education in some form, does not and should not exclude the special education options. This is in accordance with Florian's view (2008) that in reality, school systems are utilitarian in structure and are organized around the idea that intelligence is fixed, measurable and normally distributed. Thus the schools will meet the needs of most learners, while some may require something additional or different from what is ordinarily available. On the other hand, the policy of inclusion demands equity in education.

In the mainstream inclusive schools, the student needs to follow the regular curriculum. His strong and weak sides need to be noted and an Individual Educational Plan (IEP) needs to be prepared. The IEP should contain achievable goals for the student. The IEP should be prepared by an inclusive team which is formed in every mainstream inclusive school.

Special schools are an independent and parallel system. A student that attends a special school has many barriers if he (or his family) chooses to transit to a mainstream school, while the transition from mainstream to special schools is very simple. According to de Beco (2016) adopting appropriate legislation, developing policies or national plans of ac-

tion, are important starting point to inclusion for all.

Secondary education as well as the primary education is mandatory. According to article 39, paragraph 1 of the Law for secondary education, in the secondary schools for students with special educational needs, they are educated according to adequate curricu-lums for students with special needs but also with programs for the appropriate vocations or vocational trainings.

Students with special needs have the right to a free transportation, regardless of the distance of their living place to the primary or

in article 11 (2009) determines that a public building shall be projected and built so that the persons with disabilities will have an unimpeded access, movement, stay and work to and in the building.

In Macedonia there are four special primary schools for children with intellectual disabilities and two secondary schools for students with mild intellectual disabilities.

On the table below, a number of the students with intellectual disabilities enrolled in the mainstream primary schools, special primary schools and secondary state schools is given.

secondary schools. The Law for construction

Table 2. Number of students with ID in different educational placement

School year Number of students with disabilities in regular schools Number of students with disabilities in special schools (for students with ID) Number of students with disabilities in secondary state schools (for students with ID)

2014/2015 471 422 210

2015/2016 707 431 204

2016/2017 725 451 175

There is a noticeable progression of the number of students with intellectual disabilities that attend inclusive schools in the regular educational system. The number has increased from 471 students in 2014/2015 to 725 students in 2016/2017. The Ministry of education and science does not have statistical findings regarding the type of disabilities of the students.

Below, a representation is given related to the number of special educators and rehabil-itators employed in the primary and secondary schools in Republic of Macedonia (The data related to the number of students with ID and the number of employed professionals is given by the Ministry of Education and Science after a request for access to information with a

public character was sent out). Table 3. Number of employed special educators and rehabilitators

Special educators and rehabilitators employed in the primary schools 320

Special educators and rehabilitators employed in the secondary state schools 63

Mainstream primary schools

Special primary schools

Secondary municipality schools

Secondary state schools

i 72

148

53

10

The table shows that the largest number of special educators and rehabilitators are employed in the mainstream primary schools, 320 of them.

II. Analyses of the access to information and services in education

With the purpose to make a comparison of the current regulations and the current situation on the field - policy vs practice, we made an analysis by using semi-structure interviews and focus groups. In the education area, considering the fact that within the research we had parents and caregivers of children in different educational settings and with barriers

in different segments, we defined 6 concepts that in many areas intertwine with the focus groups. The quotations and concepts from the semi structured interviews are showed in tables while the quotations from the focus groups are in-text.

• Primary education;

• Secondary education;

• Transitions of persons with special needs;

• Private centers;

• Accessibility;

• Associations of with disabilities.

parents of persons

Table 4. Concept I - Primary education

Sub-concepts

Quotations

Positive sides of inclusive education

„ She wanted to socialize with normal kids, but for us it -worked. She was accepted by the surroundings, accepted by the parents. "

„ The largest problem is that we don't have a speech-therapist". We need a speech therapist that will speak Turkish. And Albanian. "

Negative sides of inclusive education

Positive sides of special education

„1 choose this school because here there are classes in Albanian. "

Negative sides of special education

„ We are missing special educators who are Albanians. These children need to be educated in their mother tongue. "_

In Macedonia there is a dichotomous system, or a division of the system to inclusive and special education as educational options for the children with special needs. The parents in this study pointed out both the positive and negative aspects of both systems. As positive characteristics of the inclusive schools they point out the positive attitudes of the teachers and the peers towards the students with ID as well as the accessibility of the inclusive schools in terms of ramps, elevators and adapted toilets. The negative side pointed out was the lack of Albanian speech therapists. Still, some parents are not satisfied by the inclusive education and they believe that there isn't any real inclusion in the country and that it all depends on the parents and their means. Similar situation is noted in Slovenia as well. According to Kovsca and Lakota (2010) there is a lack of high-quality professional work and inappropriate placement of children with ID in regular schools.

Regarding special schools, as a positive side, the Albanian classes were pointed out and as a negative one, again the lack of Albanian professionals was stressed.

Within the focus group for professionals that work directly with the disabled persons it was pointed out that the parents are not obligated to bring the document for the specific needs of their child in the schools. Also the parents have an absolute right to choose whether their child will attend a special or mainstream school. Part of the practitioners believe that the insistence for mainstream inclusion is a mistake, because there still is a lack of resources and staff. The discussants of the focus groups agreed that they support the inclusive processes, but not at all costs. The representatives of the special schools stressed that after the introduction of the inclusive process, the special schools are being perceived as an isolation for the students.

"Something needs to change in the current system, which is only and improvisation

and is not beneficial for the children nor the parents, and at the same time we are facing large difficulties."

From the focus group of the parents of children with SEN, everyone agreed that there is a lack of special educators and rehabilita-tors and speech therapists, as well as books for the secondary vocational education for persons with SEN and in the special schools there isn't enough courses related to skills and art. Regarding the inclusive processes, the views of the parents are divided, depending on their personal experiences, the degree of disability their child has and whether the society has accepted their child or not.

"In Gostivar, there is a school with elevators, special toilets, classes with a smaller number of students and a sufficient number of special educators and rehabilitators available

but you can't find this everywhere."

In the focus group consisted of representatives from the NGO sector it was pointed out that the lack of appropriate education for the persons with intellectual disability is a problem that lingers throughout the years and there aren't any appropriate answers or solutions for it.

"Children with SEN are often forced to get enrolled into special schools although they have recommendations for mainstream education, and on the other hand there are children who are supposed to attend special schools but they go the mainstream schools because their parents have good "connections" - and because of this fact they do not get the necessary treatment."

Table 5. Concept II - Secondary education

Sub-concepts

Quotations

Re-enrolment in secondary schools

„ Well, he finished with his printing school here, now he is with the cooks. "

Positive sides of the special secondary education

„ These last two-three years things are changing, because when there is a cooperation between us parents there is a cooperation between the children, and there, is a cooperation with the teachers. "_

„■ These children must grow, must progress, here they stagnate, something has to be done, something must be invented, if it is necessary we 7/ write the books, or borrow them from the primary schools."

Negative sides of the special secondary education

The first cub-concept relates to the possibility of the persons with ID to re-enroll in the special secondary schools. Parents believe that this option is better for the socialization of their children because there aren't any daycare or other public centers for them. The second sub-concept is related to the positive sides of the special secondary schools. Parents believe that their mutual cooperation is a positive side and that is has a positive influence in the interpersonal relationships of the teachers as well as the relations between the peers. A positive aspect are the competent teachers that work with the students with special needs as well as the opportunity for re-enrolment. The third and most dominant concept is related to the negative aspects of the special secondary education. The view of the parents is that a modernization of the curriculum is necessary as well as printing new books that would satisfy the special needs of the students.

Within the focus group of experts that work with persons with SEN it was pointed

out that after finishing primary school these children have to direct themselves towards carriers they hold an affinity or talents for.

"One of our students has a talent and a desire to continue her education in the secondary music school, but we are afraid how she is going to pass the entry exam".

The main recommendations that came from the NGO sector are adjustment of the curriculum for the children with SEN, adjustment of the books used in the educational process and their availability online, engagement of expert staff-special educators and re-habilitators as personal educational assistants in the classes with children with SEN, training of the staff that works in the special schools in the direction of working with children with ID, alteration of the curricula for the primary and secondary schools in direction of education of the children with intellectual disability for more contemporary vocations, not just the

current ones.

Table 6. Concept III - Transitions of persons with SEN

Sub-concepts

Quotations

Re-enrolment in

secondary schools

„ Well, he finished with his printing school here, now he is with the cooks. "

Positive sides of the special Secondary education

„ These last two-three years things are changing, because when there is a cooperation between us parents there is a cooperation between the children, and there is a cooperation with the teachers. "_

„■ These children must grow, must progress, here they stagnate, something has to be done, something must be invented, if it is necessary we 7/ write the books, or borrow them from the primary schools."

Negative sides of the special secondary education

The first two sub-concepts were pointed out by a smaller number of the examinees that had such experiences with their children while the third sub-concept was preferred by more than half of the examinees. Regarding the transition of the students with special needs from inclusive to special schools, the parents point out the lack of capacities and prerequisites in the regular schools for students with SEN as

the largest problem. One of the problems is the manner of payment of the educational assistants by professionals. Usually the parents pay for the assistants. They believe that the state or municipalities need to take care of this aspect. The second sub-concept is related to the transitions from special to regular schools. Again the parents point out that they would like their children to visit regular schools if there are

certain conditions, personal assistants before all. The third sub-concept is related to the transition from primary to secondary education. The parents, according their statements remain consistent to the type of education their child attends.

Within the focus group for experts that directly work with children with SEN it was pointed out that it is more useful for the children to attend special schools first, and then

Table 7. Concept IV - Private centers

eventually to continue into regular schools. Also, it is necessary to pay attention to the cooperation special- regular schools and to raising awareness for the fact that the child can be moved from special to mainstream schools and vice versa.

"It is much more difficult for a child that attended a mainstream school and had no progress, to start with his/her socialization and literacy later, on an older age."

Sub-concepts

Quotations

Relieving access to services in private centers

„ We took our child in one private center, 4 months, and it is really beautiful there, but for its, that's a lot of money. That should be covered by the state. "_

Opening more state supported private centers

„And they told my daughter that if we make an agreement with the Department of Labor and Social Policy they will call us. "

The fourth concept that arose from the research is related to the private centers for education and rehabilitation of persons with SEN. From the interviews made with the parents, two sub-concept emerged that intertwine in many segments. The parents believe that the conditions in the newly opened private

Table 8. Concept V - Accessibility

centers (mostly in Skopje) are good with sensory rooms in every center, but the costs for one child are too high especially for parents who are social cases. Their request is that this is financed by the government or the municipalities and that the centers have a standard working time (8-16 0'clock).

Sub-concepts Quotations

„Accessibility in this city-somewhere you have it, somewhere you don't, it doesn't matter if we have ramps if there is no handrail, in all the schools I've been in, I didn't see an elevator anywhere. "

"We have ramps, an elevator, toilet adjusted to persons with a combined disability and physical disabilities. "_

Physical access

„ We learn from the special educator and rehabilitator, from one person to Access to another."

information "You know how those things go, from one counter to the other, go here, go

_there."_

„ Ministry provides transportation for the users, and lunch and hygienic means (day-care centers)."

"We take our children to school, but the Ministry: of Finance reimburses financial means as much as a monthly bus ticket. "_

Transport

The first sub-concept is related to the physical accessibility. The respondents had divided opinions. Part of them were satisfied with the physical accessibility, but these parents had children who studied in inclusive schools or day care centers which had adequate physical access (usually due to donations). Others believed that access to different buildings is still on a low level. The second sub-concept is related to access to information. Parents generally have a problem with the access to information. The most common manner of information is through personal ex-

perience of other parents. Third sub-concept is related to transport. Examinees were generally satisfied with the manner the transportation works. The transport to and from the day-care centers is financed by the Ministry of Labor and Social Policy.

The view of the policy makers is that it is necessary to involve the NGO sector more, to have public debates and discussions, as well as a regular information of the families for their rights and responsibilities (social affairs, health, education).

The inclusive school in Gostivar is a

good example of physical accessibility and an inclusive concept. This school has 1273 students and the education is in three languages: Macedonian, Turkish and Albanian.

"Beside the inclusive approach and the inclusive team, in the school there are many means and tools that can rarely be seen in the

Table 9. Concept VI - Associations of parents of persons with disabilities

region, especially in a regular school. For the needs of the students with special needs, there is a room with a smart table, accessible chairs and tables for working the children with SEN, speech therapy sets, assistive technology and space used for sensory integration."

Sub-concepts

Quotations

Negative experience of the parents associations

„ There is something positive about the associations? They benefit from us not the other wgy around. "_

Parent training

„ The parents need training, support as well. We use to have meetings when our children were young. "_

Inclusion of parents in legislation processes

„ They are bringing laws and they are not consulting us. " We can give solutions that will be the fastest and least painful for the state.

The first sub-concept is related to the negative experience from the associations of parents. The examinees believe that only the associations benefit, and not the parents. This leads to disunity between the parents. Regarding the second sub-concept the parents said that they need trainings as well and that in the past these trainings took place in different cities in the state. The third sub-concept is related to the inclusion of the parents in the adoption of legal solutions. They believe that they are not included in this process, but on the other hand they know what is best for their children. They often cite the "Nothing about us without us" reference (Charlton, 2000), which means that persons with disabilities and their parents must be the main decision-makers for issues that concern them directly.

III. Quality of life in persons with intellectual disability

Within our study we carried out a research for the quality of life predictors. The

Table 11. Quality of life regarding age

N

LxS

analyses showed that the severity of the disability and the placement of the disabled persons have an impact on the quality of life.

Table 10. Quality of life according the degree of disability

Degree of disability Mild

intellectual 72 69;44%

disability_

Moderate

intellectual 43 59, S4% <0,01

disability_

Severe

intellectual 22 44:S7%

disability_

By using ANOVA it was determined that the persons with severe intellectual disability statistically have the lowest quality of life which is in accordance with other studies.

Domains 10-19 years old 20-28 years old Over 28 years old F

Material well-being 75% 65% 78% <0,01

Health 67% 68% 69% <0,01

Productivity 67% 65% 69% <0,01

Intimacy 75% 67% 75% <0,01

Security 83% 72% 78% <0,01

Place iu society 83% 60% 64% <0,01

Emotional well-being 75% 63% 83% <0,01

The study showed that there are no dif- age of the examinees with intellectual dis-ferences in the quality of life regarding the ability. Other studies showed different results.

Table 12. Quality of life related to the type of educational placement or care

Type of education or care No of persons Place N IxS

Primary school Mustafa Kemal Ataturk 10 39,34%

Inclusive education 15 Tetovo

Secondary school Pero Nakov Kumanovo 5 39,87%

Special primary school Idnina 10 64,87%

Secondary state school for education and 20 69.64%

Special education 45 Rehabilitation - Skopje

Secondary state school for education and 15 49,87%

Rehabilitation - Shtip

Non-residential care 20 Center for social work-Kumanovo 10 59,88%

(day-care centers} Poraka nasha-Kumanovo 10 59,74%

Non-residential care 6 Lag village 2 39,54%

(foster families) Manastirec village 4 49,84%

Non-residential care

(supported independent living 10 59,89%

PORAKA-Negotino)

NGO for persons with disabilities-Solem 10 69,40%

Institutional care -

Institution for

rehabilitation of 10 69,44%

children and youth

Topansko Pole

Persons employed in protective companies Protective company Duki Daso -Negotino 10 59,84%

21 Printing house PROPOINT Negotino 7 59,85%

Protective company Blazhe TM-Negotino 4 49,84%

Based on our analysis, persons from the city of Skopje have a better quality of life than the ones from the other smaller cities or provinces because the capital city offers more opportunities and resources. Also it is evident that the users of the student homes have a better quality of life. If we make a comparison between primary and secondary schools, we see that the students attending secondary schools have a better quality of life probably because of the use of student homes. In the area of nonresidential care, the best score is found in the persons that attend day-care centers but that is very close to the area of supported independent living, while the foster families have a much lower value. This is supported by the fact that these are persons with the least social contacts and they are not covered by any treatment options.

4. DISCUSSION

Desk-top research showed that the educational system in Macedonia is similar to the countries in the region like Slovenia (Schmidt

and Brown, 2015), Serbia (Babic, 2017), Croatia (European Agency, 2017) and others. The Macedonian system is based on the idea that inclusive education in some form, does not and should not exclude the special education options. This is in accordance with Florian's view (2008) that in reality, school systems are utilitarian in structure and are organized around the idea that intelligence is fixed, measurable and normally distributed. Thus the schools will meet the needs of most learners, while some may require something additional or different from what is ordinarily available. On the other hand, the policy of inclusion demands equity in education. Special schools in Macedonia are an independent and parallel system. A student that attends a special school has many barriers if he (or his family) chooses to transit to a mainstream school, while the transition from mainstream to special schools is very simple. According to de Beco (2016) adopting appropriate legislation, developing policies or national plans of action, are important starting point to inclusion for all.

The number of students in regular and

special schools is continuous and there are no large fluctuations while the number of students enrolled in the secondary state schools for students with intellectual disabilities is mildly decreasing. According to Kalambouka, Far-rell, Dyson and Kaplan (2007) over the past 20 years' policy and practice on the education of children with special educational needs has aimed at placing increasing numbers of children in a mainstream school environment.

Regarding the semi-structured interviews with parents and the concepts defined, in relation to the first concept primary education a similar situation is noted in Slovenia as well. According to Kovsca and Lakota (2010) there is a lack of high-quality professional work and inappropriate placement of children with ID in regular schools. Peetsma et al. (2001) developed a comparison of children in regular and special education. Children in special and regular education were matched in 2nd grade and were followed for 4 years. After 2 years, the results were mixed: some children developed better in regular education, while others developed better in special education. On average, children in regular education achieved somewhat better on mathematics than children in special schools for learning and behavioral difficulties. This difference was not found for children at special schools for mild mental retardation. After 4 years, the differences were greater. Students in regular education scored better at language and mathematics than children in special education.

In relation to the second concept-secondary education, Myklebust (2007) investigated the effect of inclusive education in Norwegian upper secondary education. He investigated the development of 494 students with special educational needs such as general learning difficulties. After correcting for relevant background variables, he found a positive effect of inclusive education on competence attainment: students receiving additional support in inclusive classes were 76% more likely to obtain formal qualifications than students receiving education in special classes. Students who achieved better at the start of upper secondary education were also more likely to obtain a formal qualification.

Regarding the concept of transitions made by children with SEN in different types of placement, Ravenscroft, Wazny and Davis (2017) believe that structural and cultural inclusion rather than a focus on impairment appear to be important for successful transition. Flexible time-tables and curriculum that responded to children's ideas rather than the oth-

er way round, allows for differences between children to emerge rather than a process which focuses on the normalization of every child.

In the fourth concept related to private centers we made a comparison to the research of Fava and Strauss (2010) who showed that sensory intervention decreases disruptive behaviors only in individuals with autism, while Stimulus Preference increases pro-social behaviors only in participants with profound mental retardation with co-occurring poor motor and linguistic abilities. Nevertheless, the existence of private centers with sensory rooms should be state financed and thus beneficial for the persons with ID.

In relation to the transport of children with SEN, which was the fifth concept defined by the semi-structured interview the guidelines for transportation of pupils with SEN in Macedonia is taken from the definition of transportation given in the IDEA (2006) and it usually includes: travel to and from schools and between schools and travel in and around school buildings.

Regarding the quality of life of persons with intellectual disabilities and combined disabilities, our research showed that once predictors of QOL are identified, "resources can be allocated to maximize their positive impact on desired personal outcomes" (Scha-lock et al., 2008, p. 186). Unlike other studies, our study didn't show that age is a determinant factor in the quality of life of the person in case. The type and extent or degree of disability is a valuable predictor of the quality of life (Brown, MacAdam-Crisp, Wang and Iarocci, 2006; Hu et al., 2012). Although our research showed that the age of the persons with ID and combined disabilities some researches carried out with families with children with ID and autism found that the older the children, the higher are the levels of anxiety and stress in parents (Hauser-Cram et al., 2001; Konstan-tareas, 1991). Our research showed that users of student homes have a better quality of life. This is also confirmed by a research done by Simoes and Santos (2016) where they defined living circumstances of persons with Id as one of the main predictors for the quality of life scores.

A research conducted by Chowdhury and Benson (2011) showed that relocation of persons with intellectual disabilities from large institutions to non-residential setting has a general positive impact of the quality of life of the persons with ID although the improvements were most prominent in the first year and they plateaued after a year. Brown, Mac-

Adam Crisp, Wang and Iarocci (2006) suggest that there is a need to both identify and provide measures of care and support that would enable families to function at an optimum level within their home and community, so they may experience a quality life similar to that of families without a child with a disability.

5. CONCLUSIONS

As in many other cases, and in many other countries, policy and practice are not always coherent. Legislation in the area of education in our country has to be modified and accommodated to the needs of the persons with disabilities and their parents or care-givers. The final conclusion from our research is that the persons with ID are still on the margins of society, and they lead everyday battles to prove that their needs must be taken into consideration in context of their human rights. For improvement of the educational process and the treatment of the persons with intellectual disabilities we must invest in the expert staff. They must follow all contemporary movements, and at the same time we need to prevent occupational burn-out in particular of the professionals who work with persons with severe intellectual disability. On the other hand, in the battle for gaining rights, there is very little time dedicated to the promotions of the very special abilities these persons have. Bearing all of this in mind, we suggest the following:

- Clear and precise strategy for inclusive education and improving working conditions in inclusive schools;

- Relieving the transitional process from mainstream to special schools and vice versa;

- Decreasing the number of students in the class with a child with SEN and simplifying of the educational inclusion of children with severe disability;

- Employment of expert Albanian and Turkish staff (special educators and rehabilita-tors, speech therapists);

- Education on the rights of the children with special needs and their parents for the expert, teaching and managing staff in pre-schools and primary schools;

- State employment of teaching assistants and personal assistants;

- Raising awareness in parents of children peers;

- Decision-making regarding educational placement done by all affected parties (parents but also the inclusive teams in the

schools);

- Networking of the inclusive and special primary schools with the mainstream and special secondary schools with the purpose of simplifying the exchange of information of children during their transition from mainstream to secondary schools;

- Transformation and restructuring of the special schools and institutions into resource centers;

- Opening of new centers for education and rehabilitation (especially for children with autism);

- State or municipality co-financing of the private centers;

- Organization of parent trainings;

- Inclusion of the parents in creation of new legislation for the children with ID;

- Modernization of the curriculum in the special secondary schools;

- Larger representation of computer technology and aids for improvement of the educational process;

- Education of the persons with ID for sexual and reproductive health and self-advocacy.

Although awareness for the importance of the rightful treatment of this problem is not on a satisfactory level, still we can notice a shift in perception and liberation of prejudice. It is important to understand that the creation of settings in which the persons with disabilities will fulfill their rights, is not a privilege for them. It is a necessity with which the disabled persons will overcome the obstacles they face on the path to fulfillment of rights. Only in this manner, the society will demonstrate its maturity and will enable respect of the dignity for all citizens equally.

ACKNOWLEDGMENTS

This research was conducted within the project for "Support of the civil society towards policies for social cohesion and differences" supported by the British Embassy in Republic of Macedonia and the Helsinki Committee for Human Right of Republic Macedonia. The goal of the project was to support the development of policies and practices for social cohesion of vulnerable groups and to improve the access to justice for the vulnerable groups.

Conflict of interests

Authors declare no conflict of interest.

REFERENCES

Ajdinski, Lj. (2000). Koh pa3BojoT Ha HHCTHT^HOHaflHara 3amTHTa, pexa6HflHTannja h 06pa30BaHne Ha xeHgnKennpaHHTe ^H^ BO MaKegoHnja. [Towards the development of Institutional Protection, Rehabilitation and Education of handicapped persons in Macedonia]. Journal of Special Education and Rehabilitation, 3-4, 176-182. http://jser.fzf.ukim.edu.mk/ index.php/journal-archive/235-2000/2000-3-4-articles/2106-2009-08-08-19-32-07 Babic, D. (2017). Special needs education in Serbia: The role and the possibility for inclusive education. [PDF file]. Retrieved: September 6, 2017 from http://www.ht.ut.ee/sites/default/files/se_ in_serbia_tartu_19052017.pdf Brown, R. I., MacAdam-Crisp, J., Wang, M., & Iar-occi, G. (2006). Family Quality of Life When There Is a Child With a Developmental Disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238-245. http://doi. org/10.1111/j.1741-1130.2006.00085.x Carney, T. (2013). Participation and service access rights for people with intellectual disability: A role for law? Journal of Intellectual & Developmental Disability, 38(1), 59-69. http://doi.org/1 0.3109/13668250.2012.738810 Charlton, J. (2000). Nothing About Us Without Us.

Oakland, California: UC Press. Chowdhury, M., & Benson, B. A. (2011). Deinstitutionalization and Quality of Life of Individuals With Intellectual Disability: A Review of the International Literature. Journal of Policy and Practice in Intellectual Disabilities, 8(4), 256-265. http:// doi.org/10.1111/j.1741-1130.2011.00325.x de Beco, G. (2016). Transition to Inclusive Education Systems According to the Convention on the Rights of Persons with Disabilities. Nordic Journal of Human Rights, 34(1), 40-59. http:// doi.org/10.1080/18918131.2016.1153183 European Agency for Special Needs and Inclusive Education. (2017). Complete national overview of Croatia. [electronic version] Retrieved September 15, 2017 from https://www.european-agen-cy.org/country-information/croatia/national-overview/complete-national-overview Fava, L., & Strauss, K. (2010). Multi-sensory rooms: Comparing effects of the Snoezelen and the Stimulus Preference environment on the behavior of adults with profound mental retardation. Research in Developmental Disabilities, 31(1), 160-171. https://doi.org/10.1016/j. ridd.2009.08.006 Florian, L. (2008). INCLUSION: Special or inclusive education: future trends. British Journal of Special Education, 35(4), 202-208. http://doi. org/10.1111/j.1467-8578.2008.00402.x Hauser-Cram, P., Warfield, M. E., Shonkoff, J. P., & Krauss, M. W. (2001). Children with disabilities: A longitudinal study of child development and parent well-being. Monographs of the Society for Research in Child Development, 66, 1-114. Hu, X., Wang, M., & Fei, X. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56(1), 30-44. http://doi. org/10.1111/j.1365-2788.2011.01391.x Individuals with Disabilities Act. (2006). Guidelines

for transportation of Students with Special Needs. [PDF file] Retrieved: August 29, 2017 from http://sde.ok.gov/sde/sites/ok.gov.sde/ files/SpecEd-Transportation.pdf

Jakob, A. (2001). On the Triangulation of Quantitative and Qualitative Data in Typological Social Research: Reflections on a Typology of Conceptualizing "Uncertainty" in the Context of Employment Biographies. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research; Vol 2, No 1 (2001): Qualitative and Quantitative Research: Conjunctions and Diver-gencesDO - 10.17169/fqs-2.1.981 . Retrieved from http://www.qualitative-research.net/index. php/fqs/article/view/981

Kalambouka, A., Farrell, P., Dyson, A., & Kaplan, I.

(2007). The impact of placing pupils with special educational needs in mainstream schools on the achievement of their peers. Educational Research, 49(4), 365-382. http://doi. org/10.1080/00131880701717222

Konstantareas, M. (1991). Autistic, learning disabled and delayed children's impact on their parents. Journal of Behavioural Science/ Revue Canadienne Sciences du Comportement, 23, 358-375.

Kovsca, A., & Lakota, A. (2010). Razlogi in predlogi sprememb zakona o usmerjanju otrok s poseb-nimi potrebami na podloga javne razprave [Reasons for changing Placement of Children and Youth with Special Needs Act]. Solsko svetoval-no delo, 3-4, 4-10.

Law for construction, Official Gazette of Republic of Macedonia, No. 130/09 from October 28, 2009.

Law for primary education, Official Gazette of Republic of Macedonia, No. 103/08 from September 8, 2008.

Law for secondary education, Official Gazette of Republic of Macedonia, No. 44/95 from September 9, 1995.

Myklebust, J. O. (2007). Diverging paths in upper secondary education: competence attainment among students with special educational needs. International Journal of Inclusive Education, 11(2), 215-231. http://doi. org/10.1080/13603110500375432

Peetsma, T., Vergeer, M., Roeleveld, J., & Karsten, S. (2001). Inclusion in Education: Comparing pupils' development in special and regular education. Educational Review, 53(2), 125-135. http://doi.org/10.1080/00131910125044

Ravenscroft J, Wazny K, Davis JM (2017) Factors associated with successful transition among children with disabilities in eight European countries. PLoS ONE 12(6): e0179904. https://doi. org/10.1371/journal.pone.0179904

Schalock, R. L., Bonham, G. S., & Verdugo, M. A.

(2008). The conceptualization and measurement of quality of life: Implications for program planning and evaluation in the field of intellectual disabilities. Evaluation and Program Planning, 31(2), 181-190. https://doi.org/10.1016Zj.eval-progplan.2008.02.001

Schmidt, M., & Brown, I. (2015). Education of Children with Intellectual Disabilities in Slovenia. Journal of Policy and Practice in Intellectual Disabilities, 12(2), 90-99. http://doi.org/10.1111/ jppi.12119

Simoes, C&Santos, S. (2016). Predisctors of Quality of Life of Persons with Intellectual Disability. [PDF file] Retrieved: September 15, 2017

from https://aaidd.org/docs/default-source/ default-document-library/predictors-of-quality-of-life-of-persons-with-intellectual-disability. pdf?sfvrsn=0

United Nations, Division for Social Policy and Development Disability. (2016). 10th anniversary of the adoption of Convention on the Rights of Persons with Disabilities (CRDP). [electronic version]. Retrieved: September 24, 2017 from https:// www.un.org/development/desa/disabilities/ convention-on-the-rights-of-persons-with-dis-abilities/the-10th-anniversary-of-the-adoption-of-convention-on-the-rights-of-persons-with-disabilities-crpd-crpd-10.html

United Nations Treaty Collection. (2011). Chapter IV Human Rights. [electronic version]. Retrieved: September 23, 2017 from https://treaties.un.org/Pages/ViewD-etails.aspx?src=TREATY&mtdsg_no=IV-15&chapter=4&clang=_en