Current Services of Early Intervention in Serbia and Challenges of
Parents of Children with MDVI on their Journey to Receiving
Holistic Support
Irena Peric
INTRODUCTION
“Early Intervention can be defined as all forms of child-oriented training activities and parentorientedguidance activities which are implemented in direct and immediate consequence of
identification of developmental condition. Early intervention pertains to the child as well as to
the parents, the family and the broader network ”
(De Moor, Van Waesberghe, Hosman, Jaeken and Miedema, 1993).
Modern models of early intervention are based on several crucial principles. Interventions are
focused on the child's strengths, interests, motivation and take place in the context of the child's
daily activities; family-oriented, relying on its strengths and priorities; conducted in a joint team
of parents and professionals; science and evidence-based practices; outcome-oriented and aligned
with the context in which the child operates (OSEP TA Community of Practice, 2008).
The aim of this paper is to overview the current situation of existing services related to Early
Intervention in Serbia, ways in which parents can use the services, as well as their challenges in
seeking more comprehensive support for their child and the whole family. Considering the existing
laws, practices, and taking into account the planned strategies for the future, the strengths and
challenges of the existing system of support for children and families are recognized. Emphasis in
this paper is placed on families with children with multiple disabilities and visual impairments
(MDVI), who face many challenges as to find ways to meet the needs of their child within the
existing support system, in order to achieve the highest possible quality of life for the whole family.
Given that there are no national statistics related to these services throughout the country, the paper
relies on available data and practical experience.
Current legislation and services in Serbia, related to support for children and
families at an early age
In Serbia, need for and importance of developing Early Intervention services for children with
developmental delays and developmental disabilities, as well as their families, has been
recognized. There are responsible policies and legislation to support the development of a national
early childhood intervention system specifically for children with delays and disabilities and
children at potential risk. However, there are no specific laws governing the components of early
intervention or the funding of the service itself. (UNICEF, 2018).
Within the existing national system of prevention and support in Serbia for children of different
ages, families of children with disabilities have different rights under the jurisdiction of the health,
social protection and education systems. The health care system provides prenatal care services,
home visits of community nurses and regular check-ups by a pediatrician. Within developmental
counseling centers, children with developmental delays or developmental difficulties are offered
services at the level of primary health care, as well as health services at the secondary and tertiary
level (UNICEF, 2018).
The system of social protection services includes assessment and planning services, which are
under the jurisdiction of the center for social work, as well as groups of social protection services
in the community and accommodation services. Community social protection services include
daily community services, support services for independent living, counseling-therapeutic and
social-educational services (Law on Social Protection, 2011). The Law on Social Protection
regulates the rights to use financial assistance due to developmental difficulties and obstacles
(allowance for assistance and care of another person, increased allowance for care of another
person, assistance for training for work) (Law on Social Protection, 2011); The Law on Financial
Support for Families with Children provides the right to leave from work or part-time work
("Official Gazette of the Republic of Serbia", 2018 ).
Within the early education system, children can use the services of nurseries and preschools.
Children can use services within regular groups of children of typical development or
developmental groups, which are a non-exclusive form of inclusion. Development groups can be
physically housed in the same building as other groups of children, or they can be located at a
school for children and students with disabilities. Children who need longer hospital treatment can
benefit from the education system in a health institution. (UNICEF, 2018).
Although each of these systems individually offers a wide range of services and support, the
interconnectedness and integration of services in order to provide holistic support to children and
families is lacking. At the national level, the need for interdepartmental cooperation between
different service providers has been recognized, which would aim at more comprehensive support
for children and families, as well as the formation of additional legal bodies in moving from the
medical to social model of service delivery. A quality system of early intervention in our country
implies synergistic action at the level of the state, regional and local level, associations and nongovernmental organizations, as well as the efforts of experts. (Đordjević, Stojanović , Djordjević,
2016).
In 2018, the Rulebook on additional educational, health and social support to children, students
and adults, which was agreed by the Minister of Education, Science and Technological
Development, Minister of Health, Minister of Labor, Employment, Veterans and Social Affairs
and the Minister of Public Administration and Local Self-Government, has been revised and
expanded in order to provide more holistic support to children and their families. Within the first
article of the "RULEBOOK", a comprehensive and individualized approach to the child is
emphasized. ("Official Gazette of the Republic of Serbia RS", 2018). "RULEBOOK" finds it
obligatory to form intersectoral commission (IRC), sat the local level. The main role or
competence of the IRC, in accordance with the “RULEBOOK”, is to assess the needs of children
with additional support. Additional support, according to the "RULEBOOK", refers to the rights
and services that provide the child with overcoming physical and social barriers to unhindered
daily life activities important for inclusion in the educational process, community life and progress
" (Center for Social Policy, 2016).
In addition to drafting this “RULEBOOK“, another major step has been taken in recognizing,
monitoring and referring to existing support services for children with disabilities at the national
level. The Register of Children with Developmental Disabilities has been in use since last year.
The use of the Register is important because its universal language describes developmental
disabilities as the intensity of difficulties in functioning and enables adequate support from other
systems, all with the aim of full participation and development of children and youth with
disabilities, as well as their educational and wider social inclusion (Professional and
methodological instructions for the application of the register, 2021).
There is a plan to establish a Center for Early Development and Inclusion in the capital city of
Serbia, in the next three years. The center will provide diagnostic, therapeutic, and educational
support to children, parents. and guardians.
When it comes to the education of specialized profiles of professionals who provide support within
the services of Early Intervention in Serbia, there are two university education institutions. There
is a Faculty of Special Education and Rehabilitation at the University of Belgrade (FASPER), and
five modules are offered: Visual impairments and disorders, Hearing impairments and disorders,
Motor impairments and disorders, Sensorimotor disorders and disorders, Speech therapy,
Prevention and treatment of behavioral disorders. Students of basic, master's and doctoral
academic studies are studying at the Department for Special Rehabilitation and Education of the
Medical Faculty in Novi Sad. Within which there are modules Inclusive education, Multiple
disabilities and Speech therapy, as a one-year academic specialization Early childhood
interventions. (Faculty of Medicine in, Novi Sad). In addition, universities conduct applied
research aimed at developing early intervention services. "Our Story" is a project under the
auspices of the Faculty of Philosophy in Novi Sad and it is conducted in cooperation with the
organization of the Civil Society "Harmony - a center for support of early development and family
relations." A manual for training and implementation of the program was developed, in which the
emphasis was placed on determining the needs not only of children with disabilities attending
preschool but also the needs of his family, as well as educating parents in the process of accepting
the condition and recognizing adequate care for children with disabilities in development (Mihic,
Rajic, Krstic, Divljan & Lukic, 2016).
As one of the main principles of early intervention is the focus on the family and the child's life in
the family environment, it is expected that public policies, programs, regulations, training,
availability and scope of services, standards, financial support, and accountability mechanisms
will reduce the number of children. with disabilities living in residential institutions, and increase
the quality of life and participation and integration of children in institutional care. "According to
the data stated in the annual report of the Republic Institute for Social Protection for 2015, out of
the total number of children (564) who stayed in institutions, 78% were children with disabilities.
Almost 12% of these children (under 17) were not included in the education system (preschools,
primary and secondary education). Most of them were preschool children (9.5%)" (UNICEF 2018
according to the Republic Institute for Social Protection, Report on Placement of Children and
Youth in State Institutions for 2015). "Experts who are involved in various aspects of a complex
network that provides health care, habilitation, education, or care for aspects of child socialization,
have an important common task, to support and empower the family in an effort to care for even a
child with multiple disabilities conditions as opposed to institutional accommodation, and for the
benefit of both children and families ” (Banjac, 2021).
Understanding the child and the family in a holistic and contextual way through modern
approaches of early interventions, the focus is placed on providing favorable opportunities and
opportunities for the child to learn and progress in everyday family activities. There are many
examples of successful implementation of early family-oriented early intervention systems around
the world. In our country various activities have been undertaken to devise a design and
implementation of a comprehensive model of early intervention aimed at the family environment
(Đoređević & Koruga, 2018).
In the last few years in Serbia, a network of services based on support for early development and
Early Intervention services has been developing in several regions. Currently, there is no official
record of the number, type, methods and effects of providing early intervention services. Although
there is no legal regulation of this type of service at the national level, based on other legal
regulations, various forms of providing services to children and families have been organized
within different types of institutions and organizations.
Based on the information available to the public, the following types of services in the field of
Early Interventions are gained:
• Under the auspices of UNICEF and its partner, a two-year project of trial application of the model
of early interventions in seven cities in Serbia has been launched since 2018. Service delivery is
based on an intersectoral, transdisciplinary and family approach designed to empower parents and
carers in their unique role in creating opportunities for every child (UNICEF, 2019). Successful
implementation of these pilot projects would serve as an example of good practice with the aim of
territorial expansion and implementation at the national level. The provision of these services is
based on national stakeholder cooperation (centers for developmental counseling, preschools and
centers for social work) using the existing capacities of the employees with additional systematic
education. The approach is based on routines and support for children in their natural environment
(home visits and cooperation with preschools).
• In some schools for children with disabilities, there are Early Intervention Centers where children
and families receive additional support. As there are no standards on the basis of which the type
of support is conceived, services vary from school to school. Most centers within schools offer
services: early stimulation of children with disabilities at the age of children aged 0-3 and 3-6,
Mobile Team (team of school professionals, that visit and support other preschools, as well as
offering treatment based individual support based in school); developmental assessment of the
child's abilities; making an individual plan for the child/family; parents counseling; providing
support during the transition period. Some schools provide additional support for the use of
customized teaching aids and assistive technology and home visits to families. One school
provides narrowly specialized support to families of children with MDVI aged from birth to 5
years.
• Private educational centers, speech therapy offices, early development centers offer a variety of
services based on the provision of services related to early development, early stimulation and
early intervention. Most of them offer child assessment, different types of treatment services and
counseling work with parents. Setting up the provision of services within private professional
practice is mostly "clinical", office, rarely supports going to the home environment, the focus of
work is mainly on the child, rarely on the whole family.
• Within the social institution for accommodation services for children without parental care, the
Center for the Protection of Infants, Children and Youth, a new service has been organized within
the daily treatment center "Impulse". Families and children are supported by early intervention in
the home environment and through joint workshops of parents and children. This type of support
within the social protection system is enabled through the development of other preventive services
(family associate, respite accommodation) in the direction of transformation and
deinstitutionalization as the ultimate goal ("Official Gazette of the Republic of Serbia", 2018).
Challenges of parents of children with MDVI in Serbia
In line with the current state of Early Intervention services in Serbia, families of children with
MDVI have little opportunity to receive timely, comprehensive and continuous support. The term
MDVI itself does not exist as a separate entity within the legal framework related to the support
of children with disabilities.
The following explanation and insight into the situation of children and families with MDVI was
considered in part through the available systematic research from 2018, research on the needs of
parents (focused on the general sample of children with disabilities, children at risk and children
with chronic diseases), as well as experiences practitioner from direct work with the families of
children with MDVI. Given the complexity of the needs of children with MDVI, as well as their
families, availability, and quality of services they can achieve within the system of services
currently provided in our country, are characterized by fragmentation within the services, negative
attitudes and low level of transdisciplinary cooperation. "Because of that, a great burden falls on
the family, which must to visit various experts and establish contact with them, often receiving
contradictory advice. For example, if a child has problems in several areas (for example, speech
and motor skills), he receives very specific help from different specialists in different places ”
(UNICEF, 2018).
From the very birth of a child with developmental disabilities, parents are referred to the health
institutions due to the necessary diagnostic and therapeutic procedures. Information about the
child, as well as the way in which it is communicated, is extremely important for the family with
regard to their coping and adaptation in the new life situation. Parents point out that doctors do not
adequately communicate information about the child. One of the most common reasons for placing
children with disabilities in the children's institutions is the insufficient support that parents need
in order to be able to take care of their child's health needs (UNICEF, 2018). Parents often wonder
whether their children receive adequate support, use all the resources of society and do not know
with whom to communicate in seeking rights for their children (Banjac, 2021).
Regular pediatric examinations include screening for psychosocial development, motor skills,
hearing and vision.” Based on the conversations with the parents, one gets the impression that the
rules regarding referring patients for further examinations are not respected consistently or
completely, which is why parents are burdened with finding an institution that will most likely
give them instructions, then to find their own way in the health system and different types of help
that their child can receive” (UNICEF, 2018). As secondary and tertiary care services are only
available in larger cities, parents face challenges in arranging examinations and transport to these
facilities. Children from underdeveloped municipalities and villages often have to travel long
distances to receive adequate support. This requires the family to be more involved in planning
time, absences from work and additional financial costs (Brindis & Houtrow, 2018).
When it comes to specifics related to MDVI children, such as early screening of visual functions,
in addition to examinations in the maternity ward, the pediatrician performs tests at regular
examinations and in case of any suspicion of visual disturbance refers the child to an
ophthalmologist. The ophthalmologist may refer the child for additional functional examinations
related to the development of visual function. Parents’ experiences show that they wait a long time
for an examination, which is why they often use services from private practice, based on their own
cost. Cortical visual impairment, although very common in the follow-up of children with MDVI,
has long remained unrecognized and without appropriate treatment by various specialists.
Functional vision assessment is available within a very few organizations. Referral of families to
the necessary examinations and vision field professionals, as well as education on the type of visual
impairment and individualized approach to treatment are very rare. When it comes to parents of
children with severe visual difficulties, experience shows that professionals of different
professions who work with their child have the challenge to adapt their working principle to a child
with visual difficulties. Creating an individualized program for a child, in order to improve visual
ability and adjust the visual environment, requires experts to harmonize data assessment of vision
and visual functioning with motor, communicative, social and cognitive skills and abilities
(Vucinic, Andjelkovic, Stanimirov & Stanimirovic, 2018). Bruder (2010) refers to the growing
heterogeneity of the needs of families and children in early intervention services, lack of resources
and opportunities for additional training and education of service providers, limited funding, as
factors affecting the quality of services.
As the capacity and availability of services within development counseling centers and pilot
projects of early intervention, as well as the involvement of children 3 years ago in educational
institutions are low, parents are finding support in the services of various organized forms of
private practice (educational centers, speech therapy offices). When asked whether and what kind
of professional support for the child they currently use, parents state that the largest number of
children is included in speech therapy treatment, then in special education, physiotherapy
procedures, occupational therapy and others (Banjac, 2021).
A large number of parents state that they need information on how to integrate therapies /
treatments into daily activities. Also, the type of disorder is significantly associated with the
expressed needs of parents for information, and parents of children with severe impairments of
psychomotor development, also express greater needs for information (Banjac, 2021). The practice
so far, which has mostly relied on on the medical concept, was based on highly specialized
individual treatments with children, most often without or with the passive presence of parents
(UNICEF, 2019).
Apart from some early intervention programs, the use of an individual family support plan is not
represented in practice as one of the most important elements of a family-centered approach. It
enables maximum participation of parents, through insight and respect for their needs, concerns,
and priorities. Joint creation of tasks and goals, highly individualized, both for the child and for
the family, empowers family members to be proactive, creative, consistent and increase their
parenting competencies (Golubovic, 2018). The parental role in early intervention views the parent
as an active partner in the team of professionals. The role of experts in this process is to empower
and train, often unprepared parents (Marković & Arsić , 2011)
In practice, little attention is paid to quality parent-child interaction, which is crucial for optimal
child development, and support for parents as a means of maintaining mental health. One of the
most important factors influencing the quality of this interaction is parental responsiveness
(Bradley, 1989). From practice, we see that parents need additional support in the field of
communication and play with a child with disabilities.
As part of the preschool service, children can attend developmental groups only from the age of
three. Although parents are provided with extended sick leave for up to 5 years of their child's life,
some parents show the need for children to attend preschool at an earlier age. Although it is legally
allowed for children to attend nurseries after the first year, this rarely happens in practice,
especially when it comes to children with multiple disabilities. Parents can request a personal
companion or pedagogical assistant from the intersectoral commission (IRC), but if there are no
funds in the local budget, the parents pay for it themselves. The development of pedagogical
profiles and individual educational plans for children is one of the measures that lead to the
improvement of the overall development of the child, but very often does not include the
participation and wishes of parents (UNICEF, 2018).
The transition period is especially challenging for families of children with MDVI. Families that
have already been involved in an early intervention service have more information and
opportunities to connect in a timely manner with various institutions, as well as support throughout
the process. The transition from the home environment to preschool, causes increased levels of
anxiety and stress in parents, dilemmas about decision - making and requires additional efforts to
adapt to new changes (Golubovic, 2018).
In addition to the need for various information related to the condition and development of the
child, the availability and quality of social services, parents also show the need for psychosocial
support. (Banjac, 2021)
Within the existing support system, parents are offered sporadic psychosocial support services.
Except for some programs, families remain deprived of systemic, continuous psychosocial and
psycho-educational assistance, both in the form of individual and group forms of support. In the
absence of local and national ways of connecting parents (other than sporadic ones within
institutional or non-governmental organizations), social networks, as well as specific support
groups on them, are increasingly an alternative way of seeking support. "One parent explains how
important communication is with other parents who have children with similar needs. In his
statement, he points out that he received emotional support in the group on Facebook, but also the
opportunity to exchange ideas "(UNICEF, 2018).
The Association of Parents of Children with MDVI in Serbia does not officially exist, parents are
sporadically referred to the Association of Parents of Children with Rare Syndromes or Rare
Diseases. Social and recreational activities adapted to children with disabilities are rarely available
in larger cities.
The quality of life of families of children with disabilities has been the subject of numerous studies.
Family support is a critical component of family quality of life, and the results of these research
support the thesis that as much as the condition of a child with disabilities has a devastating effect
on the whole family, appropriate support and strategies against stress and individualized care can
provide family members with good quality of life (Wippermann, 2013).
When it comes to various aids, children mostly use wheelchairs, orthoses, walkers, means of
alternative and augmentative communication and hearing aids (Banjac, 2021). Parents face a lack
of information, financial difficulties, and legal obstacles to exercising their rights to certain
benefits, which are often conditioned by the existence of a certain medical diagnosis.
Out of a great need to help their child, parents in the absence of timely information, independently
explore alternative procedures, which can be expensive and unnecessary, and even harmful to
some children.
Despite efforts at various levels to make families with children with disabilities equal and included
in society, negative attitudes towards them continue to prevail. “Parents often feel scared and
lonely. Many have lost hope, while parental joy and faith have been replaced by a daily struggle
and a sense of guilt and shame” (UNICEF, 2022).
CONCLUSION
The support system in Serbia for children with disabilities at early ages and their families, from
the level of referral, treatment services, psychosocial and psychoeducational support to parents,
through the transition period, involvement in educational services, social inclusion, is
characterized by fragmentation both at the level of service delivery and at the level of the childparent-expert relationship itself. The implementation of early intervention services, as the most
comprehensive form of support, is slow and unsystematic. Relying on the main principles of early
intervention and the transdisciplinary model of providing support to families, it is important to
raise awareness within different professions and sectors, both through mutual collaboration and
through additional education, developing new and strengthening existing capacities of services to
make the social model of service more dominant. Families, as our equal partners in this process,
should have easy access to verified information and their rights and opportunity to express their
needs, concerns, and priorities. Thus, empowered families can more easily face life's challenges,
proactively self-advocate for their own and their child's needs, all in order to increase the quality
of life of the whole family.
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