Situational analysis of services for babies and young children with disabilities in Serbia

Development of services for early childhood interventions: opportunities and challenges

Boy with disability playing with a nurse
UNICEF Serbia/2017/Pancic

Although progress has been made in Serbia over the past decade in providing services to children with developmental delays and disabilities and their families, the need to develop a fair system for implementing early childhood interventions at the state level is growing.

Early childhood interventions are a cross-sectoral, interdisciplinary and integrated national system of professional services for children from birth to 3 years with developmental delays, disabilities, atypical behaviours, social and emotional difficulties, and young children that have a high probability to experience a developmental delay until they reach school age due to malnutrition, chronic illness or other biological or environmental factors in which they live.

Key practices in providing support and early intervention services, that are necessary for optimal results:

1. The intervention is individualized. The provision of service is directed towards the child's strengths, interests and motivations, in the context of his/her daily activities;

2. The intervention is family-oriented. In the provision of services, the unique strengths of each family should be used, the focus should be on their priorities with respect to cultural specificities;

3. Should be based on teamwork. Professional workers and family should collaborate in solving vital issues and problems for the child and family, and make joint decisions;

4. Supported by data. Strategies used to achieve functional outcomes should be based on the highest quality data and have a coordinated and comprehensive approach in implementation;

5. It is results-oriented. The service should help the child to become more involved in activities which should be always tailored to their age, strengths and abilities.

6. It is contextualized. The planning and implementation of the intervention take into account where and when the child will use a particular skill, bearing in mind that it should reflect the day-to-day needs of the environment and activities in which the child participates with his or her peers and family.

There is much evidence that paediatricians fail to detect developmental delays if they do not use a standardized screening tool. Recently, with the support of UNICEF, ninety paediatricians in Serbia have begun using the Development Screening Tool - Ages and Stages Questionnaire (ASQ-3) to identify developmental delays. Some counselling services also use a Guide for Monitoring Child Development (GMCD) to provide parents with recommendations and identify difficulties they may encounter, including depression.

If developmental screenings are not conducted, the risks is that as many as 60% of children with developmental delays and 80% of toddlers with social and emotional disabilities will not be detected. Detection problems can arise from inconsistencies in the use of instruments or the use of instruments only after parents have raised concerns. However, even when the scores obtained by ASQ-3 or GMCD do not indicate this, parents' concerns should always be taken seriously, it reveals extremely well a child who needs extra care.

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Findings of situational analysis

Suspicion of delay and identification of delay

Parents, health professionals, and professionals from other disciplines agree that it is mostly the parents who are the first to suspect that the child's development is late or that there is a disability.

One parent suspected that his child was not hearing well when he was 22 months old and asked a pediatrician to have a hearing test. The pediatrician refused to refer the child for examination, on the ground that parents are often overreacting. The child was later diagnosed with an autism spectrum disorder.

The opinions of health professionals and professionals from other fields differ on whether they identify the paediatricians or the educators like the ones that more than the other recognize developmental disabilities.

According to field interviews, paediatricians spend three to four days a week on examining sick children and work with healthy children for one to two days. A paediatrician sometimes receives 30 to 50 children per day. Parents in the interviews say that for them the problem presents the attitude of paediatricians that suggest "waiting and monitoring the situation", while they are controlling the passage to specialists.

The analysis shows that the rules regarding referral of patients for further examinations and timelines for that are not either consistently or completely respected, which puts the burden on parents to find the institution most likely to give them a referral and then navigate by themselves through the health care ​​system. finding the different types of help their child can receive.

 

Availability of services

Patronage nurses play an important role in identifying early difficulties, familiarizing families with the services available in health centres and resources that exist in the community, but also in supporting examples of good care in the early days and months of life.

 

Areas of child development in which difficulties occur

  • Big muscles (movement of arms and legs)
  • Small muscles (use of hand and fingers)
  • Communication (what the child says and understands)
  • Everyday life skills (eating, dressing, brushing teeth, going to the toilet)
  • Cognitive skills (how a child plays with toys, solves problems)
  • Self-regulation (ability and willingness of the child to calm down, adapt to the new environment)
  • Social and emotional skills (getting along with others, expressing emotions, empathy)
  • Behaviour (ending the favourite activity, adhering to adult rules)
  • Nutrition
  • Other

All survey participants note that communication is an area in which many children need help. Experts further state that a large percentage of children have socio-emotional problems and difficulties with self-regulation.

 

Provision of services

Their child was provided with all the necessary services  74%
The child has been provided with the service within the last 60 days  66%
Someone worked with the child less than once a week 41%
The child receives a service in the place where he/she lives 69%
A single intervention with a child takes less than 30 minutes 55%
A single intervention with a child lasts 31-60 minutes 44%
A private specialist working with the child (outside of services provided by the Republic or the municipality) 22%

The ideal length of an intervention should be between 45 and 60 minutes, depending on the needs and preferences of the child and family.

According to the interviewees, when children are staying in specialized hospitals they are sometimes treated more often and the sessions last longer. State or municipality covers the costs of services provided in counselling centres, clinics and preschools, while parents generally pay for the services that the child receives at home. Although state preschools are free for children with disabilities, local governments can grant a child a pedagogical or personal assistant, but if there are no funds in the local budget, parents pay for this service themselves.

Analyzing the situation on the ground, it was noted that parents rarely engage in work with children in hospitals and institutes. In counselling centres, parental involvement varies in therapy sessions (in some counselling centres parents and siblings are allowed to attend therapeutic interventions, in others, they remain in the waiting room.) According to a daily routine based intervention model, counselling staff must establish closer cooperation with parents because the whole intervention ultimately takes place between visits. Parents spend the most time with their child and therefore have the greatest opportunity to influence developmental outcomes.

 

Parents' capacities

Parents often come up with important information and find emotional support in their parents' associations.

47% of the parents surveyed said they were members of an association. Only 14% of rural parents participate in the work of an association, compared with 58.2% of urban parents and 26% of suburban parents.

One parent explains how important communication with other parents who have children with similar needs is. In his statement he points out that in the Facebook group he receives emotional support as well as the opportunity to exchange ideas:

I download work material from the internet and copy ideas for learning from the Facebook group "Parents of children with speech-language problems". It means a lot to me that I know we are not alone in our struggle. I don't have much time to socialize.

Other parents point out that in that way they get information about their rights and how they can receive services:

I mostly get help in the form of information about our rights and how we can exercise them. In this association/group I learned all about what we can expect and how to help both the child and ourselves. I got information about the specialists and professionals who are best for my child.

 

Obstacles observed in providing services to children under the age of three

The parents and experts surveyed pointed out that:

  • Beneficiaries do not know what services exists
  • Little is known about the benefits of early childhood interventions
  • The funding is not sufficient or is totally absent
  • Lack of trained people to provide services
  • Experts are also highlighting poor coordination between sectors.

 

Analysis of the role of the ministries and higher education institutions  

Interviews with representatives of the Ministry of Health revealed that developmental difficulties are seen as a health problem that needs to be addressed not only through medical services but also with the involvement of experts from other disciplines and sectors and that the care for early childhood interventions requires cooperation between the health care, social protection and education sectors.

The Ministry of Education, Science and Technology Development and the municipalities are responsible for children from six months to five and a half years. In an interview, representatives of the Ministry of Education stress that they are partly responsible for monitoring the development of children according to established standards, but that there is currently no systematic system of control and support.

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Recommendations

  • Raising awareness through brochures, posters and other multimedia messages and channels, of parents, professionals and citizens about the importance and enormous potential of early childhood development, including the importance of the quality of the relationship a child has with parents/caregivers in the first three years of life;
  • Provide accessible child development counselling with a paediatrician and/or health care provider to any particularly concerned parent;
  • Ensure that early intervention services are different from treatment and rehabilitation by being based on the participation and engagement of the child in his or her natural environment. Different facilities, hospitals and treatment rooms are not a natural setting for infants and toddlers with disabilities. Early intervention recommends using as natural channels as possible for learning and stimulating development, such as daily routines and playing with the child, with the mandatory involvement of family members;
  • Consider that many parents still think that rehab and expert approach services are much more intensive and effective, even when they have clear evidence that this is not the case. Parents should be provided with information on the importance of early family-oriented interventions. They should be helped to recognize their capacities and chances arising from the fact that they are with the child for the longest time during the day, that the child trusts them the most and that they are therefore in the most favourable opportunity to influence children development in typical daytime situations;
  • Introducing an early assessment of family well-being and risks during pregnancy which would be performed in the first and third trimesters by an obstetrician or nurse visiting a pregnant woman at home, should be considered. This would ensure early risk identification and planning early support;
  • Establishing a system for regular monitoring of development of all children's (screening) as an integral part of preventive systematic examinations at the selected paediatrician at the age of 9, 18 and 24 months, as well as at any other age of the child when the parent, doctor or other specialist cares that the child's development is at risk.
  • Defining criteria for inclusion of children in early intervention, including conditions when children are automatically enrolled in early intervention from day one;
  • Provide capacity building for paediatricians and health care providers  to develop early intervention skills and practices through a family-centred approach that builds on the strengths of all family members;
  • Increasing the number of health associates at the level of primary health care - child development experts (psychologists, special educators, speech therapists, pedagogues) as a necessary condition for providing quality early intervention services;
  • Ensuring that early intervention services are provided intensively and long enough for children to make progress. Therefore, services should be tailored to the needs of the child and include his or her family members and other key adults, such as daycare nurses or educators, in order to integrate the intervention into the child's and family life and activities that child knows, loves, and enjoys;
  • Actively integrating preschools as a natural learning and development environment for children with disabilities or developmental risks into the early intervention system. Early intervention services should be used to support parents, educators and professional associates in the process of transforming segregated pre-school education - development groups.  Particular attention should be put on supporting educators in changing attitudes towards inclusion;
  • Peer interaction is important for learning.
  • Educators should be offered with training on how to foster interaction between children of the same and different ages, regardless of their abilities, as an interaction between educators and children;
  • Supporting parallel development of other family services, such as parent support groups, counselling, placement support services, etc;
  • Create an intersectoral model of early intervention services;
  • Ensuring that one of the three-line ministries (Health, Education, Social Welfare) takes the lead in developing early childhood intervention services;
  • Establishing partnerships between faculties and developmental counselling centres or intersectoral units that provide early intervention services in order to create opportunities for real practical work and knowledge to be translated into practice;
  • Developing national standards for early interventions that are proven and consistent with international practice standards of relevant professional associations and organizations. Aligning vocational training programs with these standards, with clear links between training content, tasks, tests and competencies required.