UNICEF Innocenti Research Centre Piazza SS. Annunziata, 12 50122 Florence, Italy w e b s i t e : w w w . u ni c ef - i c dc . o r g

CHILDREN AND DISABILITY IN SLOVENIA

Co-ordinator: Tomaž Banovec Statistical Office, Ljubljana

MONEE Country Analytical Report 2002

The opinions expressed are those of the authors and do not necessarily reflect the policies or views of UNICEF.

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Unicef 2002 CHILDREN AND DISABILITY IN SLOVENIA Introduction Children with disability are a special, relatively small group of children. They are specially treated by the state. However, the number of children with physical and mental development disorders in Slovenia simply cannot be given due to the lack of appropriate records. The reason is that Slovenia does not have a verified and consequentially standardised system that could be expressed in some sort of register, or at least as regards a specific cross-section of criteria in a numerical assessment of the situation. In the statistical system children with disability are not a special unit of observation. Therefore, the data on children with disability can be found partly in social welfare statistics, health statistics, education statistics and employment statistics. The number of children with disability and some of their characteristics and characteristics of their parents are reported by institutions that have contacts with them: centres for social work, schools, institutions, etc. Unfortunately, some data overlap. Because a child can, for example, be an elementary school pupil and at the same time live in an institution, (s)he will be shown in education statistics and in statistics of institutions for training children and youth with development disorders. We do not know how many children are double counted (of even triple counted) in this way. We also do not know how many children live at home with their parents. These and similar problems should be gradually solved by introducing records for the needs of monitoring, planning and managing family policy and for scientific, research and statistical purposes. The Parental Protection and Family Receipts Act, which came into force on 1 January 2002, determines that personal data collections shall be set up, kept, maintained and monitored by the Ministry of Labour, Family and Social Affairs. So far there have been no surveys in Slovenia that would research the people's attitude towards children with disability.

1. Children with disability: who are they? Children and youth with physical and mental development disorders Children and youth with special needs, from 1997 on 1. Register of children at risk 2. Centres for social work 3. Pre-school or schooling establishments The number of children with physical and mental development disorders attending pre-school or schooling establishments 4. Ministry of Labour, Family and Social Affairs - allowance for nursing a child

1.1 Register of children at risk Twenty-five years ago, the so-called register of children at risk was conceived as the result of a consensus between the health care profession and the political authorities of the time.

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However, the register was never legalised in a formal sense for various reasons, notable amongst which was the exceptionally subtle moral and ethical sensitivity of the issue. Therefore, it operated and continues to operate mainly on the basis of personal engagement and positive attitude towards the goals of the register on the part of certain individuals, particularly those in the medical profession. Today, it is not possible to use the figures based on the existing state of this fragmented risk evaluation as a concrete illustration, one of the primary reasons being that the figures are not summarised. In addition, risk evaluation itself does not set apart actual development disorders as life condition. The first legal action in the lives of children with physical and mental development disabilities can be considered to be the classification process, the main objective of which is to guide these children to enter education programs that satisfy their needs.

1.2 Number of classified children Classification of children is the responsibility of centres for social work. There are 62 of them and they fall within the competence of the Ministry of Labour, Family and Social Affairs. Classification of children can be proposed by parents or experts from individual institutions, especially health, social, pre-school or even schooling establishments. Figures on the total number of classified persons from all age groups in Slovenia do not exist. We only have figures on the number of persons classified each year. Once a year these centres report to the Statistical Office the number, age, sex and some other characteristics of categorised children. In the 1976-2001 period, the number of categorised children in Slovenia was more than halved. It decreased especially in the 1980s, while in the 1990s the annual number of categorised children stabilised. Every year about 900 new children aged under 20 are classified anew. Mr. Tomaž Jereb estimates that between 1992 and 1994 about 2.4% of children in an individual generation was classified.1 The number of births in Slovenia has been falling for 22 years. On the other hand, the number of categorisations has not been changing much since 1989. The number of categorisations in one calendar year is always higher than the number of categorised children. A child can namely be categorised twice in one year, either because of worsening or improvement of the illness or because of the complaint of parents regarding the child’s categorisation. We do not know how many cases of recategorisation because of the change of illness there are in one year, we only have the data on parents’ complaints since 1989. The annual number of complaints has not changed much. If the annual number of recategorisations because of illness is also steady, we can conclude that the number of categorised children is on the rise. Table 1 shows the number of categorised children by sex and age. The presentation starts with 1994 because of different categorisation of children and youth by age before 1994.

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Tomaž Jereb: Pravice in skrb za otroke z motnjami v telesnem in duševnem razvoju in njihove družine, in Situacijska analiza o položaju otrok in družin v Sloveniji, Slovenski odbor za Unicef, Ljubljana 1995

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Table 1: Number of categorisations by age and sex, Slovenia, 1994-2001 Year

Proportion Total of girls, %

1994 874 40,6 1995 922 39,8 1996 899 39,3 1997 863 39,0 1998 972 38,7 1999 850 39,9 2000 794 41,8 2001 957 37,3 Source: Statistical survey SOC-1

0-6

7-14

15-17

18-20

55 94 63 51 58 95 99 81

750 754 670 672 707 601 568 718

59 56 120 46 112 94 68 105

10 18 46 34 95 60 67 52

Number of 18-26 complaints 187 162 117 178 237 154 176 105

36 19 28 31 26 22 15

In all years more boys than girls were categorised. The ratio is about 6 to 4. At birth the boy/girl ratio is 51.5 to 48.5. A great majority of children are categorised at age 7-14, i.e. during compulsory schooling. The frequency of categorisation falls with age. However, it is the lowest among pre-school children. For the 1994-2001 period it is shown by the following table. Table 2: Categorisation of children by age, Slovenia, 1994-2001 1994-2001 Average number of categorised children by single age *

0-6

7-14

15-17

18-20

18-26

10,6 85,0 27,5 15,9 18,3 *Average number of categorised children in the age group divided by the number of ages in the age group.

Table 3: Children and youth (0-20 years) classified into categories by type of development disorders, Slovenia, 1995-2001 Type of disorder

Blind and weak-sighted With hearing disability With speech disability With other physical disability With mental development disorders Behaviourally and personally disturbed With several disorders

1995

1996

1997

1998

1999

2000

2001

17 33 12

14 20 15

18 26 14

16 51 15

29 52 20

28 55 37

43 97 38

82

103

110

70

54

63

85

692

652

582

719

599

509

581

33 53

28 67

48 24

31 70

25 71

19 83

25 88

Children are classified into seven categories, shown in Table 3. In the 1995-2001 period about 70% of them were classified into the group of children with mental development disorders. This group was further divided into five subgroups by the severity of the disorder. In a great majority of cases (over 90%) children on the border of normal ability or only slightly mentally disturbed children are classified at age 7-14, while children with moderate, heavy or severe mental disorders are to a larger extent classified already at pre-school age.

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The number of categorised children is only one indicator and it is by no means perfect. Another indicator that can be used in part is the number of children with physical and mental development disorders attending pre-school or schooling establishments.

1.3 Children with special needs in pre-school and schooling establishments Placement of children with special needs means to determine the needs of children in terms of school programs. According to the 2000 act, placement is obligatory before entering elementary school. Commissions for placement at centres for social work determine the program that suits each child. If parents want to include their children in kindergartens – which is not compulsory – the program for this child is determined by the placement commission. In the school year 1998/99 there were 56 development class units in Slovene kindergartens, which is 1.7% of all class units in kindergartens. Most development class units were intended for mentally disturbed children (62.5%) and 22% of class units were intended for children with physical disability. Development class units took care of 277 children, which is 0.44% of all children in kindergartens. Class units for mentally disturbed children had 156 children and class units for children with physical disability had 67 children (Table 5). The number of development class units has recently been falling sharply because a part of these children has already been integrated in regular class units and because the share of children that remain at home for various reasons has been rising. These children are taken care of by the family, relatives or neighbours. Pre-school education at home for children that cannot be included in kindergartens because of their illness and would be carried out by the kindergarten or some other legal person registered for performing such activities has not yet come to life, except as part of public works. There is also a big need for legal regulation and realisation of early detection of children with special needs. Schooling of children with special needs: - in regular schools, - in elementary schools with adjusted curriculum and upper secondary schools with adjusted programs, - in class units for education and (work-linked) training within the institutions or elementary schools. We do not know the number of children with special needs included in regular units. We do know that their number has been on the rise. The change of school legislation provides the opportunity of integrating children with special needs into regular programs. In addition to the new legislation, the inclusion of children in regular schools was helped by the fact that decrease in the number of births means lower enrolment in elementary schools. In order to keep their position, schools liberalised the inclusion of children they used to reject in the recent past.2

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Tomaž Jereb: Pravice in skrb za otroke z motnjami v telesnem in duševnem razvoju in njihove družine, in Situacijska analiza o položaju otrok in družin v Sloveniji, Slovenski odbor za Unicef, Ljubljana 1995

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Since 1995 between 3,500 and 4,000 children have been included in elementary schools with adjusted curriculum and in upper secondary schools with adjusted program. The number has been falling because of the fall of the number of births and because ever more children are integrated into regular programs. There are 60 elementary schools with adjusted curriculum in Slovenia. In addition, 94 regular elementary schools have special class units with adjusted programs. In the school year 1999/2000 there were 2,750 children in these class units. The average size of the class unit in these schools was 8.5 children. The size has not changed since the mid-1980s. Upper secondary schools are attended by three times fewer children than elementary schools. However, the percent of those attending upper secondary schools has been rising slowly. We gather this from the decrease of the number of children attending elementary schools and the constant number of children attending upper secondary schools. A great majority of children attending elementary schools with adjusted curriculum are slightly mentally disturbed (90% in 1999/2000). In upper secondary schools with adjusted programs their share falls to less than a quarter. The number of children in upper secondary schools for slightly mentally disturbed youth rose considerably in the last two years (Table 4). The reason is underestimation of their number in the past. Up until the school year 1998/99 children with special needs who continued education after finishing elementary school were included in upper secondary schools with adjusted programs. There are ever fewer such schools because pupils with special needs are integrated in regular upper secondary school programs of lower vocational training. Children and youth that cannot be included in schools for pupils and students with special needs can be included in class units for education and training. These units are attended by moderately or seriously mentally and physically handicapped children and youth. Class units for education and training of moderately and seriously mentally and physically handicapped children and youth are organised within institutions for training, work and social welfare of seriously and moderately mentally handicapped children and youth and within elementary schools. They have close to 2,000 children and youth: about 800 in 41 units at institutions and the rest in special units in elementary schools.

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Table 4: Pre-school establishments, elementary and upper secondary schools for pupils and students with special needs, Slovenia, 1997/98 – 2001/02

Kindergartens Pre-school class units at training centres Elementary schools for pupils with special needs - for slightly mentally disturbed children - for blind and weak-sighted - for deaf and partially deaf - for children with personal and behavioural disturbances - for children with moving disturbances

Upper secondary schools for students with special needs - for blind and weak-sighted - for deaf and partially deaf - for youth with moving disturbances - for youth with personal and behavioural disturbances - for slightly mentally disturbed youth

Class units of work-linked training in institutions

1997/98 1998/99 1999/00 2000/01 2001/02 ... 277 281 265 236 ... ... 141 132 130 3176 2800 46 179 91

2948 2632 37 153 65

2750 2481 36 138 32

2567 2303 31 147 25

60

61

63

61

563 47 105 136

583 43 103 171

845 54 93 186

900 44 96 165

139 136

127 139

105 407

117 478

1979

1999

1996

1986

2000

Source: Statistical Yearbooks of the Republic of Slovenia

Table 4 shows that there are about 5,000 children with special needs in all types of education establishments. This number mostly agrees with the number obtained on the basis of data on special allowance for nursing a child, which means that a great majority of children with special needs is included in education programs.

1.4 Allowance for nursing a child Allowance for nursing a child is financial allowance for nursing paid to one of the parents of a severely ill child or a physically or mentally handicapped child. This allowance was introduced on 1 May 1996. Eligible to receive allowance for nursing a child are severely ill children or physically or mentally handicapped children, on condition that they are citizens of the Republic of Slovenia and have permanent residence in Slovenia. If the child lives at home with parents and parents take care of him/her, the allowance amounts to 30% of the guaranteed salary. If the child is in daily institutional care with free nursing, the allowance amounts to 20% of the guaranteed salary. Children treated, trained or educated in institutions with free nursing are not eligible to receive allowance during their stay in the institution. With this provision the situation of families that have children in institutions and those that have children or youth with special

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needs included in other organised care (daily, half-daily, short-term temporary treatment in an institution, mobile service, etc.) should gradually be levelled. On 1 May 1999 the mentioned act was amended. The amendments determined that severely ill children or physically or mentally handicapped children over 18 years of age and in training are also entitled to receive this allowance, but not after they complete 26 years of age. The right to receive allowance for nursing a child is universal and independent of income. It does not exclude the right to receive child support.

Table 6: Allowance for nursing a child, Slovenia, 1996-2001 Allowance for nursing a 1996 1997 1998 child Average monthly number of families 2557 3602 4013 Average monthly number of children 2619 3705 4132 Funds paid (mio SIT) 26 495 568

1999

2000

2001

4291

4590

4806

4424 641

4731 723

4963 829

Source: Statistical Yearbook 2002, Statistical Office of the Republic of Slovenia, Ljubljana, 2002

The number of children receiving the allowance for nursing a child has been increasing, especially in the first two years after the act was adopted. There are two reasons: the first is that the parents have to apply for the allowance and the knowledge about the possibility of applying spread gradually, and the second, with minor effect, is the widening of the age interval in 1999. The data on the number of children receiving the allowance for nursing a child are, because they are linked to money, probably closest to the actual number of children and youth who are severely ill or physically or mentally handicapped. However, there are no objective criteria to decide about who is severely ill or physically or mentally handicapped. Allowance for nursing a child is given to about 5,000 children, i.e. about 250 new children every year. It is very difficult to establish the share of children in one generation because in the past 20 years the number of births fell by 40%. It is probably between 1.1% and 1.2%.

2. Government responsibilities for children with disability In Slovenia children and youth with special needs receive special care from the state. Protection and training are determined by Article 52 of the Constitution of the Republic of Slovenia, which states that disabled people shall be guaranteed protection and work-training in accordance with the law, and that physically or mentally handicapped children and other severely disabled persons have the right to education and training for an active life in society, which is financed from public funds. They have equal rights of access to health services and other services, the right to receive financial receipts in the system of family receipts, tax reliefs, and other benefits from labour relations, pension and disability insurance and social welfare.

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According to Health Care and Health Insurance Act, children and youth with special needs have the right to full and free health care, which is implemented within the framework of general and secondary health care of children and youth. The basic health care provides health rehabilitation of physically or mentally handicapped children and youth. Within the primary child care basic development sorting of all children is done at medical examinations of infants in the first year and at medical examinations of threeyear-olds, whereby the Denver test adjusted for Slovene children is used. Preventive mental hygiene activity is carried out in special departments operating at health centres or outpatient clinics for children. Development dispensaries (there are 27 of them) have the task to monitor development of children at risk and to treat children with development disorders. Work in these departments and development dispensaries is multidisciplinary team work. The central health institution in the country that monitors children at risk from birth on and directs them for further treatment is the Pediatric Clinic. The Pediatric Clinic keeps a list of all children with diabetes, haemophilia, phenylketonuria and cerebral palsy. It prepares regular consultations and schools for them. It also runs the school for asthmatic children and children with rheumatism. All this is covered by the compulsory health insurance, which also covers (partly or completely) dietary products for chronically ill children. Until about three years of age, children with special needs have individual treatment by the mentioned institutions, while recently mobile treatment of the youngest children with special needs has been gaining importance. This is done at home in their families. After the children complete three years of age they are included in special pre-school departments at institutions, in development class units at regular kindergartens or in regular pre-school programs intended for all children. The new school legislation classifies among children with special needs children and youth who are mentally disturbed, who have motion problems, are blind and weak-sighted, are personally and behaviourally disturbed or have speech problems. Children with special needs include also children with learning problems and especially talented children. In June 2000 the basic act for the field of training children with special needs was adopted, i.e. the Act on Placement of Children with Special Needs. This act substituted the old Act on Education and Training of Physically and Mentally Handicapped Children and Youth. The adoption of this act started a long process of integrating children with special needs into regular forms of education. The act regulates placing and determines the ways and forms of implementing education and training. Instead of the classification of children that was the responsibility of the Ministry of Labour, Family and Social Affairs, the new act regulates compulsory testing of appropriateness of placing that will be carried out by the Ministry of Education, Science and Sport. It is also new that the act enables placing of children with special needs into: − regular training programs with adjusted implementation and additional professional assistance, − adjusted programs providing acquirement of an equal education standard, − adjusted programs providing acquirement of a lower education standard, − special programs, − education programs.

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Another important novelty is also provision of the necessary additional equipment for students with special needs that are included in study programs. In this act children and youth with special needs are: − children with mental development disturbances − blind and weak-sighted − deaf and partially deaf − children with speech and language disability − children with motion disability − protractedly ill children − children with deficiencies in individual areas − personally and behaviourally disturbed children − children and youth (under 18 years of age) that require adjusted implementation of education and training programs or special education and training programs At the moment there are no statistical data on the number of children with special needs according to the new classification. There are two main reasons for this: the classification of children as envisaged by the new act has not yet been finalised and lack of human and financial resources. In the field of family receipts, in 1999 the age interval for children entitled to receive allowance for nursing (see 1.4) was widened. In addition, the new Parental Protection and Family Receipts Act, which has been in force since 1 January 2002, introduced special benefits for parents with disabled children such as the possibility to prolong leave for nursing a child by 90 days, the possibility to work part time and receive payment for work actually done – with the state covering contributions (this right can be asserted by only one parent of a child with severe mental and motion disability), the possibility of receiving partial payment of the lost income if one parent decides to leave the labour market to nurse the child that needs special nursing and care. The new pension and disability insurance act adopted in 2000 introduced the possibility of pension and disability insurance that can be asserted by the mother, father or some other person taking care of a disabled child than cannot live and work independently and takes out voluntary pension and disability insurance. With this differences between families having children in institutions and those having a disabled family member at home will be gradually reduced. Parents of children with special needs have special rights in the field of tax policy. In income tax return they have the right to reliefs if they take care of, nurse and support children and adults with development problems. Every three years these parents can also buy a car without having to pay the tax. In addition, they have the right to some smaller benefits in other areas, which are not much in terms of material but represent a positive attitude towards the handicapped (e.g. exemption from paying a tourist tax for the handicapped child, in some cases free urban passenger transport for some categories of children, etc.).

3. Institutional and public care of children with disabilities In Slovenia there are five institutions for training and care of children and youth with severe mental disabilities. They are taking care of about 800 children and youth living in the 10

institution (about 40% of them are over 21 years old). The number of employees in these institutions is about the same as the number of protégés. In 2000 and 2001 the occupational structure of employees was as follows: Table 7: Educational staff in institutions for training, work and social welfare of seriously physically and mentally handicapped children and youth, Slovenia, 2000-2001 Educational staff Total Women Guardians - nurses Educators Special pedagogues - defectologists Social staff Psychologists Teachers of practical lessons Medical staff Other professional personnel Other personnel Managers

2000

2001

838 748 311 2 135 6 6 26 160 8 170 14

833 746 317 139 6 5 13 167 13 157 16

In addition to the mentioned five institutions, there are seven institutions for children and youth with mental disabilities, for blind, weak-sighted, deaf and partially deaf children, and for children and youth with motion handicap. These institutions have between 750 and 780 children. In 1999-2001 about a half of these children lived in the institutions. We do not have any data for previous years. These seven institutions train and accommodate blind and weak-sighted children and youth, while children and youth with other disabilities mostly live at home, at their parents or foster parents. Judging by the data for the past three years, the share of children living at home is on the rise. Almost all these children are attending kindergartens, schools (elementary, upper secondary) or class units for training and education within institutions. Only about 4% of these children are not attending school class units.

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Table 8: Children taken care of by institutions for training moderately or seriously mentally handicapped children and youth, for blind and weak-sighted, for deaf and partially deaf, for other handicapped children, and for behaviourally and personally handicapped children and youth according to where they stay, Slovenia, 1999-2001 Living

1999

%

2000

%

2001

%

in the institution at home

78 9

89,7 10,3

77 11

87,5 12,5

72 13

84,7 15,3

Blind or weak-sighted

in the institution at home

76 11

87,4 12,6

77 13

85,6 14,4

57 17

77,0 23,0

Deaf or partially deaf

in the institution at home

63 347

15,4 84,6

56 351

13,8 86,2

57 326

14,9 85,1

With motion disability

in the institution at home

144 23

86,2 13,8

176 0

100 0

148 84

63,8 36,2

Total

in the institution at home

390 361

51,9 48,1

386 375

50,7 49,3

334 440

43,2 56,8

Moderate or severe mental disability

A special group of children are behaviourally and personally handicapped children and youth. We have 11 institutions taking care of about 440 such children and youth. Children and youth were accepted by the institutions mostly by the order of the centre for social work (in 2000 and 2001 87% by the order of the centre for social work and 13% by the decision of the court). The sex ratio is different from sex ratios in other institutions: 70% of them are boys and men. Most of them are 16-17 years old and they spend more than two years in these institutions. During that time 95% of these children and youth attend elementary or upper secondary school. A half of these children and youth have only one parent. School education of parents is lower than the average for the adult population in Slovenia.

4. Children with disability in families and in communities Life of children with special needs is closely linked to life of their families. In addition to the state, which provides certain benefits, families are assisted by non-governmental and voluntary associations. They perform a very important role. In the past 35 years such associations were the active partner of the state in setting up the system that we know today. With their initiatives, solutions and actions, organisations for the disabled people are in most cases the motive force of the entire development in this area. These organisations act as mediators between parents and national professional institutions. Organisations for the disabled play an important part in the field of working with children and youth with special needs by organising schools for parents, offering assistance to families

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with disabled children and offering individual supporting services for disabled students (study material in special forms, transportation). In Slovenia there are a number of associations and unions that cover individual categories of disabilities in terms of contents. There is also ever more interest linking of parents within individual wider categories. Families with mentally and physically disturbed children are assisted by centres for social work. Their task is to offer assistance to individuals in social distress, to families and to persons in institutional care. Families of chronically ill children or mentally and physically disturbed children are also entitled to receive family assistance at home if the use of this service substitutes institutional care. Mentally and physically disturbed persons are entitled to receive mobile assistance. This form of professional assistance at home comprises activities and procedures for correcting disturbances and for counselling and therapeutic work. Entitled to this assistance are children, youth and adults with moderate or severe physical and mental problems to whom this service substitutes care and employment under special conditions or institutional care. Children and youth who do not live in own families and who need a substitute for family education and care and additional professional treatment are also entitled to receive assistance from centres for social work as are children and youth with development disabilities who are included in training programs. In the 1991-2001 period the number of mentally and physically disturbed children, youth and young adult users of centres for social work decreased, as well as their proportion among all children, youth and young adult users of centres for social work. The number and share of those with light mental disturbance and hearing problems fell the most. This might indicate the increasing care for these children which decreases the need for services offered by centres for social work. The only group for which a slight increase was registered are those with other physical disturbances.

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Table 9: Mentally and physically disturbed children, youth and young adult users of centres for social work, Slovenia, 1991-2001* 1991 Mentally disturbed - total Severe mental disturbance Heavy mental disturbance Moderate mental disturbance Light mental disturbance On the border of normal ability Physically disturbed – total Blind and weaksighted Hearing problems

1992

1993

1994

1995

1996

1997

1998

1999

2000

2001

5732

5697

5833

4725

4594

4153

3907

3748

3671

3779

3213

327

310

350

250

238

231

207

245

235

248

166

354

360

379

299

293

291

240

233

209

248

171

865

870

944

788

791

807

792

752

764

861

613

2342

2253

2230

1780

1692

1562

1494

1380

1337

1324

1242

1844

1904

1930

1608

1580

1262

1174

1138

1126

1098

1021

1369

1239

1245

1111

1071

1178

1219

1234

1244

1250

1240

143

134

134

144

129

141

133

123

123

135

151

345

315

318

268

258

276

257

250

253

281

253

95

98

97

93

93

98

90

91

107

122

120

Speaking problems Other physical disturbances 302 304 335 308 321 387 446 436 412 405 401 Several disturbances 484 388 361 298 270 276 293 334 349 307 315 Source: Statistical Office of the Republic of Slovenia, SOC-1 * Values in the table represent the number of visits in centres for social work and not the number of persons visiting. Only if every person/user visited a centre for social work only once a year, the number would represent the actual number of users.

In addition to all-day assistance, new forms of work are gaining importance such as daily care and training (8-9 hours), half-daily care and training (4-5 hours), short and temporary reception and dwelling communities that try to provide adequate and comprehensive treatment at home and equalizing the possibility for independent life. The number of dwelling communities in which younger disabled people are included has been increasing.

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