Montenegro has signed two more contracts with health institutions abroad, to provide children with and without developmental disabilities with prevention, early detection, diagnostics, therapy, rehabilitation... and treatment.
Parents of children with autism, some of them, say that these contracts should exist, but they also insist that some of the services must finally be made available in Montenegro. The United Nations Children's Fund (UNICEF) also points to a similar point. An earlier opinion of the Protector of Human Rights and Freedoms (Ombudsman) also points in this direction, which, among other things, recommended that the competent ministries urgently consider opening a study program, or a college for special education and rehabilitation in this field.
The signing of new contracts with healthcare institutions abroad is one of the triggers for a protest in front of the Government of Montenegro building in Podgorica on April 2, World Autism Awareness Day. The protest is scheduled for 14.00:XNUMX p.m.
"Personally, my emotions are boiling, and I see that this is the case with other parents as well, primarily because of the contracts that the Health Insurance Fund signed with two other defectology and speech therapy centers in neighboring countries," he tells "Vijesti". Tamara Pejović from Podgorica, mother of a boy with autism, and one of the organizers of the protest.
The Health Insurance Fund has previously collaborated with the Institute for Psychophysiological Disorders and Speech Pathology "Dr Cvetko Brajović" and the Institute "Đorđe Kostić", both in Serbia.
In February, the Health Insurance Fund signed two more contracts for the provision of health services with the Speech Therapy and Defectology Center “Buzganović” from Novi Sad, Serbia, and the Center for Stimulating Growth and Development “AB Medica” in Tuzla, Bosnia and Herzegovina.
"For years we have been appealing for early intervention to be organized here, so that families would not have to go out of the country," he says. Sabina Imeri, also a mother of a boy with autism.
Imeri and Pejović claim that early intervention is possible in Montenegro, they say that there are enough therapists, they just need to be paid:
"We have the premises, we don't need to build new ones, our resource centers are empty in the afternoons, why isn't this early intervention organized in those same resource centers?"
They've been looking for changes for years.
Their demand, which they will repeat in front of the government building and at the protest, is not new. Parents and guardians of children with autism have been talking about it for a long time.
"For years we have been looking for changes, looking for a solution in our country. If someone wants to go across the border, that's fine, we do not deny the expertise of those centers, we do not ask for the termination of cooperation with them, let it be a backup plan. But, we are asking for something like that to be in Montenegro... Instead, we get the answer that new contracts have been signed with the Institute in Novi Sad and Tuzla, and that they were signed based on conversations and experiences with 'some' parents. With which parents," they ask.
They explain why early intervention is important and why it is important to have support in one's own country, and say that services in centers abroad are limited to three to six months of support, after which families return home, where they no longer have it:
"They may or may not make some progress there and come back here where they have nothing. And, if there is no regression, the child will stagnate, because they are not continuing the treatment they had there."
Imeri and Pejović repeat the statements on the basis of which the Ombudsman acted several years ago, at that time on the complaint of 13 parents, and they question the treatments in centers outside Montenegro, how often they take place, what methods are used, whether children are worked with individually or in groups...
They also believe that in some centers where children are referred, they do not receive the correct diagnosis, that instead of "autism", some children receive the diagnosis "developmental dysphasia", which, they say, misdirects parents when it comes to further support for the child.
"People get caught up in the idea that it's not autism, but developmental dysphasia, which is treated differently, when in fact it could be autism, and many important things are missed in working with the child," says Tamara.
Sabina adds that living with autism is difficult, but not impossible.
“We all function and live,” he says.
Tamara adds that life with autism "is not completely normal and is not like any other."
"It's a little different, with more temptations, but - we're happy, we're looking forward to the little things."
Although their children are no longer candidates for early intervention, during the conversation, the interlocutors of "Vijesti" repeatedly emphasized its importance - for the sake of other families. However, they add, there could be support and work for their children, who are now elementary school students. And what about when they finish school and grow up... On that path, say Imeri and Pejović, there is also a lack of support for parents, or guardians...
Early intervention program
In Montenegro, a pilot model of family-oriented early intervention is being implemented in two municipalities, Bijelo Polje and partly in Podgorica, with the support of UNICEF. UNICEF says that Kotor was also part of the program, but is no longer, mostly due to a lack of staff in that municipality.
The pilot was also supported by the European Union in its initial phase.
The program, they explain, is being implemented based on international experiences, mostly relying on the model that has been implemented in Portugal for the past few decades, while similar models are also being implemented in America and Australia. In the near future, this model has been spreading in Serbia and Croatia in the past few years.
"Over the past decades, efforts have intensified at the global level to strengthen and expand support for children with disabilities and their families/caregivers in accordance with the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities. There has been a significant shift in understanding how child development in the first years of life can be improved, which has influenced a change in philosophy, principles and practices in the field of early intervention," they say.
Accordingly, they add, contemporary practice is based on the understanding that family interactions are critical to child development.
This, they say, makes modern early intervention services more family-centered, rather than directly child-centered, with the goal of equipping parents and other significant adults in a child's life (such as educators) with the skills, knowledge, and confidence necessary to meet the child's needs and to provide everyday opportunities that foster learning and development.
"In other words, parents, or families, are encouraged to provide activities and opportunities for children to develop their abilities and learn new skills at home and in the local community, and to achieve full participation in school and society," UNICEF explains.
The pilot early intervention program has three basic characteristics: It is oriented towards the family, towards their strengths and goals, in order to support the child to develop their potential and be included in society (instead of direct work with the child that excludes and does not empower the parent to raise their child); it is based on holistic support through daily routines and activities in a natural environment, at home or kindergarten, because young children learn best in familiar environments and from people they trust (instead of working with the child in clinics and offices that are not a natural environment for the child nor aligned with routines and family context) and it provides integrated support to the family through the work of a selected expert backed by an entire intersectoral team so that the support of all sectors is coordinated and in order to best respond to the different needs of the family (as opposed to a fragmented approach where the parent wanders from one institution to another).
The Government of Montenegro has adopted the first Early Childhood Development Strategy for the period 2023 to 2027. It envisages a series of activities to improve early childhood development and early intervention. These include the introduction of a methodology and registry for monitoring child development in health centers in order to identify developmental delays and deviations in a timely manner. It is also planned to expand the pilot project Family-oriented early intervention, strengthen the capacities of pediatricians and other health workers on child development and early intervention through joint intersectoral training with kindergartens and social and child protection services in order to improve cooperation. The strategy also includes equipping the so-called centers for children with special needs at health centers and improving the work of the Center for Early Development, which belongs to the Clinical Center of Montenegro.
Unicef: Services should be for families
However, UNICEF says, key challenges remain:
"Lack of staff, lack of so-called centers for children with special needs, because a more adequate term that is not stigmatizing needs to be found for this service. Families in most municipalities do not have access to them, there are no national guidelines and procedures, as well as standards for early intervention services and for the staff employed by providers of these services. These are prerequisites for establishing a quality early intervention system across the country," they say, adding that these instruments are necessary for regulating a system that will ensure the provision of quality early intervention services to all children and families who urgently need them in all municipalities and among all population groups.
UNICEF also said that significant funds are being allocated for signing contracts with institutions in the region, "instead of providing early intervention services in Montenegro."
"And at the local level so that services are as close to families as possible," they say.
In this regard, the recommendations of the representative office in Montenegro of this international organization are that reforms need to be accelerated, that more staff should be hired, and that departments should be opened at faculties for the education of the necessary staff in Montenegro, that scientifically based work standards should be introduced, as well as that services should be made available at the local level.
The organizers of the protest of parents of children on the autism spectrum have invited everyone who has a child with any difficulties to join them in front of the Government building in Podgorica, starting at 14.00:XNUMX p.m. The invitation is also extended to family members, professional workers, doctors, special education teachers, speech therapists, educators and therapists who work with children...
They remind us that early intervention is just one of a number of challenges and that the state has not yet established a registry of people with autism, although it has long been announced, that young people are not provided with services such as supported housing when they reach a certain age, that parents are not provided with the "parental leave" service...
"We have been silent long enough, it is time to make a significant change and do something for our children. They cannot fight for themselves, so we must," they said, adding that they will not stop until each of their demands is met:
"A long and arduous struggle awaits us, but not with difficulties, but with institutions and decision-makers."
There are many children who are not seen by the system.
Based on conservative estimates from the Early Intervention Situation Analysis (RISE Institute, supported by UNICEF and the European Union, 2022), the proportion of children aged 0 to six years who need early intervention services, annually, ranges between 10 (3.700 children) and 15 percent (5.550 children).
"If this estimate is correct, only 31 to 46 percent of children in need of early intervention services are identified and receive these services," UNICEF points out.
This finding, they add, unequivocally points to two major problems.
Although Montenegro has a significant program of neonatal screening services, they say, there is no universal system for systematic and regular developmental screening, which would ensure the identification of children at risk and with developmental delays or disabilities.
"And a system for rapid and effective referral to essential early intervention services is needed," they say.
Additionally, there is no universal child tracking system that would ensure that no child, once identified, “falls through the cracks” and is left without the early intervention services they need.
Bonus video:
