Institute for Developmental Neuroscience in Slovenia

Supported by:
THE FOUNDATION OF CHILD NEUROLOGY, Slovenia
LEAGUE AGAINST EPILEPSY, Slovenia
NGO-INSTITUTE FOR AUTISM, Slovenia
Department of Child, Adolescent and Developmental Neurology, UNIVERSITY MEDICAL CENTRE Ljubljana – Division of Paediatrics

INTRODUCTION

Like all the small, oddly shaped European countries that emerged from the shadow of so-called Eastern block in the last decade of the 20th century, SLOVENIA has needed to work hard to establish its place on the International stage. This has certainly been something of a challenge, on account of the country’s tiny population (just 2 million), and its diminutive size (32,000 km2) not to mention its shape (Slovenia has a hen-like shape). Slovenia, the first of the former Yugoslav Republics to become independent (June 25th, 1991), is slightly smaller than New Jersey, though it has considerably more mountains – about a third of the country consists of Alps, which are shared with Austria and Italy – and rather much less beach (the coastline is only 29 miles long) which is squeezed between Italy and Croatia, with whom it has a contested boarder. The Project of Slovenian distinctiveness was surely not helped when a year after its independence, Slovakia made its own declaration of statehood, thus confusing those casual watchers of the World Scene who were still having trouble distinguishing between Latvia and Lithuania. Slovenia has, however, a reputation disproportionately large for its size when it come to the world of ideas. Slovenia has a rich history of famous people (however some of them visted it only for a very short time, like James Joyce, who stepped out of the train in the capital Ljubljana by mistake, thinking he is in Trieste), is producing extremly good winesorts and is well known by its wintersport champions and football players. There here also been famous poem writers (as France Preseren), architects (as Joze Plecnik), scientist (as Jozef Stefan) and also historians (as Janez Vajkard Valvasor). And Slovenia also has a very rich history of non-governmental organizations (NGO).

The development of NON-GOVERNMENTAL ORGANIZATIONS in Slovenia can be traced back to the emergence of various communities in the 7th and 8th centuries and continued with guilds, religious charity organizations and foundations in the 14th century, the first workers’ movements in the first half of the 19th century, the first legal regulations (the 1867 Law on the Right of Association and Societies and Political Societies) and over 1,700 cooperatives that existed before the World War II. The year 1974 was an important cornerstone in the development as the new Societies Act was adopted this year. This was the start of the process of the NGOs funding. However due to ineffectual state support these organizations were small and lacking mass support. After the year 1980 many new social movements emerged (peace, environmental, human rights, spiritual and other movements), and some of their members joined the political sphere later on (!); yet the others remained active on the NGO level. Unlike in the other transition countries independence did not lead to a mass emergence of modern NGOs (with the exception in some areas as sport, culture and social care). The expectations of many that the introduction of democracy would help to increase civil society’s impact on political decision-making and consolidate civil society did not occur. As a result many of the issues that NGOs have dealt with in the past still remain.
It is important to read the next chapter to understand why all the trials to make healthy foundation for quality decision-making in Slovenia have (until now) not yielded much success.

THE ROLE OF NGO FOR THE ECONOMIC AND SOCIAL DEVELOPMENT OF SLOVENIA*

/Text taken from: *Primož Šporar; Rapporteur: 2nd meeting of the EU-Slovenia Joint Consultative Commitee, Brussels, November 2002/

As in other countries, the NGO sector in Slovenia is diverse, heterogeneous and filled with organizations with hugely varied goals, structure and motivations. The characteristics that are usually shared by NGOs are: they are formed voluntarily, they are not created to generate personal profit, are independent (in particular from government, political parties and/or commercial organizations) and are aimed to act in a public arena on concerns and issues related to weel being of people, specific groups of people (e. g. children) or society as a whole. The most common forms of NGOs in Slovenia are societies (other forms amount to only around 3% of the total). There are around 15,000 societies registered, and 350 religious communities, more thab 100 foundations and around 200 private institutes. The sports (28%) and culture (12%) are among the most common areas represented. Social field is less well represented (only around 3%), however you can find some strong NGOs in that field, some of which will have a public benefit status. There is quite a lot of organizations which exist only on paper but are not working in practice. Employment in the societies is small and amounts to around 0.4% of all employed people in Slovenia, however the highest proprtion of the employed in the societies is in the organizations for disabled (around 15%), which shows the special interest of this field. There are around 91% of societies (and 81% of foundations) without employed staff. There exist no statistical data about the number of part time workers, but in some instances the number might be quite high. Only 20% of the societies will have an annual budget above 13,000 Eur, while the total income of NGOs in Slovenia is around 2% of GDP (around 215 million Eur). One fourth of this sum comes from the state budget. The development of NGOs is one of the more important tasks for Slovenia in its process of harmonization with the EU and Slovenian NGOs wish to play a more important role in this process. Slovenian NGOs are also interested to be more involved in the activities of NGO networks within the EU. Some major NGOs in Slovenia have already good contacts, but most of the rest do not have the capacity to be active at the European level. Around 50% of NGOs expect better environment for their work after joining the EU.

Regarding the legislation the main problems are related to the public benefit status, the procedure to obtain such status and the consequences of it. Another problem is lack of private foundations that can’t be established by the law (only foundations in public interest can). Next probem is the lack of stimulating tax legislation enabling private sector (organizations and corporations) to support NGOs. There is also lack of legislation on information, consultation and co-operation. All these make the NGO life difficult since state administration hardly understands the meaning of principles of open government or civil dialogue. Regarding the NGO capacity main problems remain in the extremly low employment rate in NGOs as it is very hard to assure working places within NGOs since the flow of income is not sustainable (e.g lack of long term contracts). Good candidates hardly see the NGOs as an alternative to the state administrator or commercial sector and voluntary work is not stimulated enough and not regulated properly either. All mentioned problems are results of the lack of government strategy to define NGOs as one of the priorities for social and economic development of Slovenia. Co-ordination of the activities regarding the NGOs in state administration is missing and partial solutions within the state administration usually create only new problems. Hopefully the government will sign the agreement act on collaboration with interested NGOs in 2004. After that the final strategic step should be the adoption of National Programme on NGO Development in Slovenia.

THE FOUNDATION OF CHILD NEUROLOGY AND ITS POSITION WITHIN SLOVENIAN NGOs

The Foundation of Child Neurology in Slovenia has been established in 1997 on the initiative of the Department Child, Adolescent and Developmental Neurology at the Childrens’ Hospital Ljubljana. As a non-governmental institution it aimed primarily to improve the quality of the functional diagnostics in child neurology that is to support financially the purchase of costly modern equipment, which could not be supplied from the regular hospital budget. Such equipment was aimed at better detection and diagnostics of sleep disturbances, cardiorespiratory abnormalities during sleep, sensorial deficits and cognitive (dys)functions as well as more complex epilepsy diagnostics. During the period 1997-2003 the foundation participated in financing or has financially completely supported the purchase of the following: digital EEG machine, machine for evoked potentials-sensory electroencephalography, cardiorespiratory monitor, oximetry device, videoEEG and ambulatory EEG machine in a sum mounting over 100,000 Eur. The money was collected either by the financial donations of large Slovenian Enterprises and corporations (Mobitel, A-Banka, SCT) or direct donations of the particular machines (HermesPlus and Vasco). Some money was collected by individual donations during different campaigns also supported by some enterprises (e.g. Mercator).
On the other hand we felt that the standard of care at both inpatient units (for infants and toddlers and schoolchildren and adolescents respectively) should be improved in view of more children (and their parents) friendly hospital. This can be achieved only through additional financial support for improvement of the living conditions (proper climatization, sleeping chairs for the parents staying overnight at the bed) as well as donations (e.g. toys, computer games, books, TV and music sets). Until now through direct donations from various small enterprises the two departments (for infants and toddlers and for schoolchildren and adolesecnts) have been adapted and the condions were improved, however still much has to be achieved (especially regarding climatization and very crowded conditions as well as co-sleeping beds for parents).
Foundation has recently participated at the educational level in the field of child neurology: support of visits from outstanding lecturers from abroad, financial support of education abroad of young researchers, co-organization of symposia and congresses and publishing several booklets on special topics of child neurology and neurophysiology. Its president is also one of the board members of IPOKRaTES which is an International non-profit, non-governmental organization for postgraduate seminars in the field of pediatrics and especially child neurology, neonatology and developmental pediatrics with the head ofice in Mannheim, Germany. Under the educational tasks is also the running of webpage for ICNA (International Child Neurology Association) which has been successfuly done by prof. Velickovic Perat, Head of our Developmental Department.
Since December 5th, 2000 the foundation has become one of the 11 constitutional members of the Association of Slovene Foundations. The president has become also one of the Board members of the Association and has also participated in some of the joint meetings with the Legal Information Center for NGOs Slovenia. It is since that time that the awareness of the position of Child Neurology Foundation within other societies and NGOs, and especially sharing the same problems with other members of different kinds of NGOs, has raised enormously. We have also become aware that long term startegic plans should be developed and pushed forward as the main goal for future efforts and strategies of our Foundation.

THE FOUNDATION’S STRATEGIC PLAN FOR FUTURE: ESTABLISHMENT OF THE INSTITUTE OF CHILD DEVELOPMENT IN SLOVENIA

Why we need such an institute in Slovenia ?

It is tradionally throughout Europe and USA that the institutes of child health are the leading tertiary centers for complex management and care of children and adolescents, especially those with developmental impairments/neurological disabilities and handicap. Such institutes, which are more or less independent and supported by different grants, non-profit and non-governmental organizations and individual donations as well as charity foundations. They are internationally recognized institutions dedicated to improve sick child’s and adolescent’s quality of life through excellent (and frequent multidiciplinary) patient care, special education, research and professional training. Its clinical programs are interdisciplinary designed, tailored to the individual needs of each child and adolescent, and services include different subspecialized units and outpatient clinics, offer home and community programs and services to assist families. On the other hand they are the mainstream educational institutes in the scope of childhood neurological and developmental disabilities. They are also the leading research institutions in the field of child’s normal and abnormal development. Among such well established and renowned institutions (among many others which are also famous) are The Institute of Child Health (ICH) in London and Kennedy Krieger Institute (KKI) in Baltimore. Such institutions are always clinically supported by the governmental hospital facilities and partly also by its staff. In the case of ICH this is The Great Ormond Street Hospital and in the second case it is the Johns Hopkins University Childrens’ Hospital. These institutes employ their own staff, majority of whom are paid by different grants as the researchers or from funding as well as the staff from the university hospitals and school of medicine. Some occasional staff members (or part time workers) are from other institutions (e.g. faculty of sciences).

In former Yugoslavia there were two well-known and established institutions in Belgrade and in Zagreb and both are even now working perfectly and even in Zagreb, Croatia they have extended the scope of research and scientific work and formed Croatian Institute for Brain Research, while on the educational and clinical level they have established The Academy of Child’s Development. In Slovenia there has not been such an institution until now and the activities of clinical work, research and education were mainly performed on the individual initiatives from the staff of the Department of Child, Adolescent and Developmental Neurology, University Childrens’ Hospital Ljubljana and partly from other institutions involved in the field of child’s development and neurorehabilitation. It is aimed that such an institute would also co-ordinate all activities in the field.
On the other hand there have been already 10-year long efforts to persuade responsible adiministrators at the Ministry of Health, Slovenia to bulid a New Pediatric Hospital (NPH). The efforts have been implemented through an NGO, named Foundation for building of New Pediatric Hospital. It seems that now agreement has been reached and that the works will start to build NPH, however to much lesser extend that it has previously been planned. The minimizing of the surface area will primarily reduce the outpatient care, research and teaching facilities.
Child, Adolescent and Developmental Department is at present located on four different locations and it is aimed that all outpatient, multidisciplinary clinical, neurodevelopmental teratment as well as educational and research facilities would be placed on one location as the part of the newly formed Institue of Child Development. The ideal place for such an institute would be already existing building in Ulica Stare pravde 4 (formerly called Town Childrens’ Hospital) where now are located: child neurology outpatient unit, developmental psychology unit, neurodevelopmental tretament unit and inpatient department of child nephrology whicih will be moved out of the building when NPH will be built. This place is located in a peaceful place just below the Castle hill and has good parking facilities and is also adjacent to the buliding where many of the NGOs, associated with the child’s health and wellbeing, are located (Ulica Stare pravde 2).

Fig. 1: The existing building of former Town Childrens’ Hospital at the location of Ulica Stare pravde 4 where newly formed Institute of Child Development is proposed to be located. On the left hand side is adjacebt building of Ulica Stare pravde 2, where already many of the NGOs concerned with child’s health and weel-being are located.

What should be its structure?

The formation of the Institute of Child Development has been designed by:

Department of Child, Adolescent and Developmental Neurology, University Childrens’ Hospital Ljubljana and its Units, especially: Center for Developmental Neurology and Unit for Neurodevelopmental Treatment (NDT-Bobath Center), Center for Child & Adolescent Epilepsy Care, Unit for Neuropsychology and Unit for Developmental Psychology;

Foundation of Child Neurology, Slovenia

Foundation League against epilepsy

Child Neurology Society, Slovenian Medical Association

Postgraduate Courses on Child Neurology, Medical Faculty of Ljubljana University

The possible co-partners of the Institute of Child Development would be:

Department of Child, Adolescent and Developmental Neurology, University Childrens’ Hospital Ljubljana and its Units;

Other clinical departments (specialized in different fields of child’s care, management and rehabilitation) of the University Medical Center, Ljubljana;

Dispansaries for Developmental Neurology throughout Slovenia (22 units);

Medical Faculty of Ljubljana University and its Institutes (especially those in the field of Neurosciences);

The Oncology Institute Ljubljana;

The Institute for Rehabilitation, Ljubljana;

The Institute Josef Stefan, Ljubljana;

and

The Town of Ljubljana;

Ministry of Health, Slovenia

National Health Insurance Company, Slovenia

Different NGOs

Donators and funds;

EU projects.

What programs would be included?

CLINICAL PROGRAMS
(see also: Detailed programmes and their benefits – Addendum)

Should include all the subspecialities to meet the needs of children and adolescents with developmental disabilities and neurological diseases. There should be included:

• Outpatient programs: multidisciplinary care of children with cerebral palsy (CP), developmental disorders and autism, comprehensive epilepsy care and management of drug resistant epilepsies (including multidisciplinary teams for possilble epilepsy sugery or other non-medical techniques); neurodevelopmenatl treatment, neuropscyhology;
• Preventive programs: registries for »at risk children« and for cerebral palsy, registry for epilepsy; early recognition and screening of possible developmental disorders; partnership with NGOs in the field of disabilities and handicap;
• Community programs: cooperation and interdisciplinary board meetings with the dispansaries for Child Developmental Neurology throughout Slovenia; partnership with community programs and instructions for proper management and care of disabled;
• Diagnostic programs (incl. the Hospital daycare Units)
  • development of different neurophysiological laboratories (some already existing) e.g. sleep laboratory, noninvasive EEG diagnostics, evoked potentials, cardiorespiratory studies;
  • development and standardization of neurocognitive tests, developmental psychological batteries;
  • GM (general movement) laboratory and follow-up of special groups of »at risk« newborns;
  • advanced neuroimaging programs (MRI, MRS, fMRI) with particular interest in developmental pediatrics and child neurology research
• Day-care admissions for children and adolescents who need diagnostics and management of their chronic condition (e.g epilepsy, cerebral palsy, cranio-facial abnormalities, sleep disorders, multiple malformations and/or handicap).
• Therapeutic programs: neurodevelopmental treatments (Bobath); follow-up of different treatment approaches in CP children (variuos medications, botulinum toxin, intrathecal baclofen, additional surgical procedures); different multidisciplinary board meetings;
• Possible private consulting rooms for offering second opinion in the fields of developmental pediatrics, child neurology, neuropsychology and developmental psychology (especially for those children and parents coming from the countries of former Yugoslavia) and giving neurodevelopmental treatment and possiblew arrangements for further physiotherapy, rehabilitation and other porcedures (different spa treatments, electrical stimulation, biological currents, etc) for referrals from abroad

EDUCATIONAL PROGRAMS

Neuro-developmental treatment programs: Bobath International, Bobath for babies, Bobath for physicians;

Postgraduate Courses in Child Neurology (Medical Faculty Ljubljana)

Postgraduate Course on Mother and Child Care (Medical Faculty Ljubljana and Institute of Health, Ljubljana)

IPOKRaTES Seminars on Child Neurology, Child Development and Neonatology

Short courses (with international participation and domestic experts) on the selected topics in Child and Developmental Neurology (e.g neuromuscular, epilepsy, neonatal seizures, clumsy child etc)

organization of International Congresses within the scope of Child Development and Pediatric Neurosciences.

RESEARCH

Areas of interest and possible research:

Pediatric neurophysiology,
pediatric neuropsychology and
advanced neuroimaging research.

Autism and neuropsychiatric disorders research.

Epilepsy comprehensive care and management of associated cognitive impairments.

Cerebral palsy and other movement and developmental coordination disorders research.

Learning and other cognitive disorders, mental retardation/developmental disabilities research.

Molecular neurosciences and neurobehavioral research.

Rehabilitation research.

Extramural research: in co-operation with dispansaries for developmental neurology throughout Slovenia

CONTINUING EDUCATION AND PUBLICATIONS

See above: Educational programs

Organization of Ground Rounds (incl. participation of those experts at different other fields of neuroisciences) at the inpatient department, outpaient and daycare units

Organization of regular clinical-case conferences;

Organization of regular meetings of Society of Child Neurology;

Offering possibilities for postgraduate studies in the field of Dveleopmental Pediatrics and Child Neurology for pediatricians from former Yugoslav republics

Publications of Child Neurology Library booklets;

Other publications in
the field of child and developmental neurology;

Regular updating of Foundation of Child Neurology webpage with a special »corner for parents«

Regular updating of ICNA webpage.

What would be the costs?

Financial resources

The part of the former Town Childrens Hospital which has been included in the NPH should be bought, while for the rest a rent can be paid in accordance with the state, Ministry of Health and town of Ljubljana.
The approximative value of the whole building (around 2,200 m2) would be around 2 bilion slovenian tolars (SIT) which equals to around 10 million Eur.

Some of the rooms and other places would need restoration and renewal up to around 5 million SIT (= 200.000 Eur).

Some parts of the programe are feasible with the already existing equipment, while some of the new machines for the neurophysiological studies and some batteries for developmental psychology should be bought (summing up to around 10 million SIT = 400.000 Eur).

In the future a new MRI machine should also be included in the equipment as there is a need for a pediatric MRI with already now demnds for around 1,000 investigations yearly. The machine can be purchased either on leasing conditions or one of the old machines from the University Medical Center can be bought for the begining.

In the future also a foundation of own neurogenetics lab should be thought of.

Human resources

What would be the benefits?

/Some of the more detailed benefits are under the heading: Detailed programmes and their benefits – see Addendum/

Some of the benefits are already presented in the introduction. Slovenia needs such an Institute of Child Development which would offer the comprehensive care during the period of child’s development and would aim at constant improvement of quality of care of children and adolescents with chronic neurological conditions such as epilepsy, cerebral palsy, behavioral disorders, etc. What Slovenia also needs is better connections with similar institutions in EU and USA which can only be achieved through co-operational programs and exchange of experts as well as joint research and NGO projects.
Different constitutional parts/units of the institute would enable quality interdisciplinary approach towards management and care tailored at the individual needs of each child and adolescent. Together with continuous clinical disciplines (those already exiting) the institute would offer regular outpatient care and daily hospital care in those fields which are not yet (or not successfully) represented in helath care system of Slovenia. These are neurocognitive deficits, neurobehavioral disorders, complex habilitation programs (at one place only) and even home-care and other community programs.

There is a constant and raising need in the community for further education and pertinent informations in the field of child’s development (normal and abnormal). Such an institute could offer educational programs for parents of chronically ill and/or disabled children and adolescents and would aim at constant updating of the websites of the Foundation of Child Neurology (according to the parents’ needs). It would also provide a wide network connections with the NGOs, dealing with and devoted to the children with disabilities and their parents, and other self-help funds. At the same time institute could continue with some already well established postgraduate courses in the field as well as it should take care for a concerted and well planned CPD (continuous professional development) programs (according to the needs of postgraduate students and those pediatricians and other health workers who are interested in the field of developmental pediatrics and child neurology).
Above all the institute should have a major role in the scientific and research activities within the broader scope of neurosciences. It should aim at good co-opetration with other institutes of the Medical Faculty of Ljubljana University as well as with similar institutions abroad. Main targets would be: developmental brain abnormalities, neurogenetics, neuroradiological research, epilepsy, cerebral palsy, movement disorders and developmental coordination disorders, neurocognitive defects and syndromes, neurobehavioral disorders, developmental psychology, developmental neuroophthalmology, developmental biology and neuropharmacology.

And finally the institute would aim also to coordinate all the different activities within the NGOs in the field of developmental pediatrics and child neurology and would tend to ensure quality joint projects with other NGOs in Slovenia as well as the NGOs within EU, concerning the field of Developmental Pediatrics and Child Neurology.

In summary

The program would include only the tertiary care regarding the interdsciplinary as well as individual clinical work (»different subspecialities according to the child’s needs at one place«).

The team sessions and board meeting would all take place only at the institute. Such an institute would cover and supervise also the work of dispansaries in the field (developmental neurology outpatient clinics) and would offer clinical, multidisciplinary and educational (CPD) help.

The institute would take over the comprehensive care programs, such as comprehensive epilepsy care and comprehensive neuro-developmental treatment and habilitation of children with cerebral palsy and developmental disabilities.

It would aim at individual child needs and parents education according to the child’s condition and social conditions. There would also be regular board meetings for individual children and adolescents where it should be decided about further management and care, and given opinion on additional investigations and treatments abroad.

The institute could offer private consultations and second opinion for the children and their parents, referred from abroad, especially from the former Yugoslavia, as well as mediating different treatments for those interested from abroad. At the same time the institute can offer also postgraduate training for the pediatricians from former Yugoslavia, interested in the field of developmental pediatrics and child neurology

The institute would take care about research activities in the field as well as about educational programs, postgraduate courses and education for parents, and community care programs.

The institute would support different NGOs and develop all forms of cooperation and programs within the field.

The institute would take care about good clinical practice principles, ethics, proper medicines for children and adolescents, guidelines and clinical pathways (algoritms) in the field of developmental pediatrics and child neurology.

Finally, Slovenia has been for a long time lacking such an institute and there would be expected definite final benefit of forming such an institute which could also more clearly present and control the consumption of different financial and personnel resources (see also Addendum) in the field of developmental pediatrics and child neurology.

ADVISORY BOARD MEMBERS

Prof. dr. Peter Rosenbaum,
McMaster University and
Chair: CanChild Centre for Childhood Disability,
Hamilton, Ontario,
Canada
rosenbau@mcmaster.ca

Prof. dr. Giovanni Cioni
INSTITUTO – IRCCS Stella Maris,
Divisione di Neuropsichiatria Infantile Universita degli Studi di Pisa,
Via dei Giacinti 2, 56018 Calambrone,
PISA
ITALIA
gcioni@inpe.unipi.it

Prof. dr. Ronald G. Barr, MA, MDCM, FRCRC
University of British Columbia
Research Instistute for Children’s & Women’s Health
Centre for Community Child Health Research
(Director)
4480 Oak Street, L408
Vancouver
British Columbia
V6H 3V4
Canada
rbarr@cw.bc.ca

Mary Eming Young
Human Development Network Education Group
Education Advisory Service
World Bank
1818 H Street, NW
Washington, DC 20433
USA
eservice@worldbank.org

Akad. prof. dr. Ivica Kostović, dr. med.,
Croatian Institue for Brain Research
University of Zagreb Medical School
Šalata 12
10000 Zagreb,
Croatia
ikostov@hiim.hr

David Neubauer, MD, PhD, Professor in Pediatrics, Consultant Child Neurologist
Head of Dept. of Child, Adolescent and Developmental Neurology, University Childrens’ Hospital Ljubljana, Slovenia
and
Board Director Foundation of Child Neurology, Slovenia