Monday, October 1, 2018

A cross-cultural perspective on medical treatment, education and support for students and adults with ASD

Focus on Autism
International Conference in Krakow
Panel discussion 27 of Sept. (Thursday) at 16.30

1. Where are we now? Advantages and disadvantages of solutions implemented so far at the regional level in the field of: diagnosis, early support, education integration and/or inclusion, becoming independent adult.

Autism in Macedonia has a short history. It is not like the history of autism in the USA or other western developed countries. For many decades, especially during the communist period of Yugoslavia, children with autism were diagnosed as mentally retarded, schizophrenic, or some other diagnosis. Children and adults with autism missed regular treatment because of inadequate institutions, lack of finances, parental ignorance, and prejudices in the society. Many of the children with autism have been placed into big institutions such as the Special Institute in Demir Kapija. 
Because of the poor economic situation, low standard and inappropriate services of social assistance; families were no longer able to care for the medical, physical, and psychological needs of their children and found institutions to be some alternative. Macedonia also has a history of reporting fewer cases of ASD than can reasonably be assumed to exist nationally, indicating the probable existence of cultural biases or other errors in diagnosis. So, there are no reliable data about the statistics on how many children with ASD are diagnosed. A National Register of persons with ASD is not established yet. 
There is a lack of knowledge on ASD amongst professionals who are involved in work with children with ASD, a lack of standardized protocols for early detection, diagnosis and assessment tools. The precarious use of international classifications and diagnostic tools are resulting in low and late detection of autism. Officially in Macedonia, the ICD-10 diagnostic manual is still used in the health care system. 
In spite of our lobbying activities during last 18 years, there is still no national strategy about autism spectrum disorders in the country. 
Social institutions on the local level are not capable of ensuring that people with autism can remain in their area of residence and be provided with adequate educational and social services. The lack of statistical data on people with a disability hampers an evaluation of whether all persons with any given disability are socially jeopardized and if they are able to access their rights in the field of social care. The Law on social protection established measures and services in the field of social protection and care through social prevention, de-institutional care and protection and the right for social support. 

2.Where are we going? Creating the optimal model of therapy, education and support.

In the Republic of Macedonia, there is no systematic approach to early intervention services and programs. There are no service providers for the early intervention of children with ASD. Home-based interventions and other social services available in Western Europe and the United States are relatively limited. Parents access various kinds of treatments for their children, the most popular are: training of social skills, psychomotor re-education, biomedical treatment and treatment with medicaments. Sometimes they use unproven treatments which can be dangerous for the health. The use of ABA and TEACCH is at an incidental level. Macedonian pediatricians, psychologists and rehabilitators lack the skills to conduct such early kinds of treatments. There is no effective law in Republic of Macedonia for early intervention practices. 
Authorities have to start with certificated programs for training the professionals. Almost half of parents are not satisfied with early intervention programs in our country. One third of parents spend between 250-350 euros on early treatment which is a significant amount of their own budget. Some of children with ASD stay at their homes out of the system of special or general education. There are no statistics on this issue. 
In last two years, the Ministry of Labor and Social Policy opened two daily care centers for children with ASD in two towns: Skopje and Shtip. In the last five years three more parental associations were created in Skopje, Shtip and Bitola, but they have quite low impact in the field due to lack of money and lack of knowledge. 
The condition of adult people with ASD is very bad. Nobody takes care of them. They don’t have access to complementary treatment approaches. Many individuals with ASD who do not receive enough support from their families - especially adults, are institutionalized into neuropsychiatric institutions. 

3. What commonalities do we tend to see. Is that what binds us together greater than what divides us so far. What can we work out in the field of national and international law to implement the Autism Europe's Charter of Rights Autism. 

The Republic of Macedonia ratified the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol on 29 December 2011 and it is a step forward in improving the quality of life of people with ASD in Macedonia. The diagnosis of autism or other developmental disabilities does not entitle the individuals or their families to benefits – they have to apply for the disability status. 
MSSA translated and adopted brochure Autism Europe's Charter of Rights Autism in 2002. We distributed it to 120 MP’s. No one answer from the Macedonian Parliament. 
According to the Constitution of the Republic of Macedonia, the concept of freedom and rights is embedded in a citizen-liberal democratic concept, which begins with the principle of citizenship. An essential citizenship freedom and right is personal freedom and the right to acquire education, from the elementary to the university level; which ensures not only personal development and the general development of the individual, but also to the ability to contribute to raising the general cultural level of the society in which they live. According to the Law for elementary education, special educational plans and the curriculum are required to nurture and educate pupils with special educational needs. The regional boards of psychology, medicine, and education give recommendations about the conditions which would best serve the child, but the parents are not legally bound to follow them, and they can enroll the child into a school of their choice. Also for education in schools, there is no legislation to guide and support parents into choosing the type of school to send their children to. Great numbers of parents send their children to mainstream schools with a 1:1 specialist assistant who is financed by the parents. Having a child with autism spectrum disorders in Macedonia can have a huge financial impact for the family. It appears that policy makers are not interested in this area and have no understanding of the problems families face who take care of children with autism. 
The Macedonian Scientific Society for Autism provides free lectures about autism and specific approaches, such as PECS, TEACCH and ReAttach method. The organization also participated in an EU-funded project regarding parent and professional education in conjunction with the Apollonia Foundation from Gevgelija. However the majority of events are on an ad hoc basis and are inaccessible to most families (ESIPP project, 2015). Though parent education programmes exist in parts of Europe, in others they are extremely limited or non-existent. In 2015 the Macedonian Scientific Society for Autism started as a partner 
in a three year project (September 2015-August 2018), funded by the European Commission, in which family members, professionals and academics from five European countries are working together in a strategic partnership to address this inequity (Belgium, Croatia, Cyprus, Macedonia and UK).

President of MSSA


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