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Meeting of the National Coordinators of the Southeast European Autism Network

May 30, 2013

IN ATTENDANCE Secretariat Mrs. Entela Vakiari, SEAN Secretariat, Albanian Children Foundation, Albania, sends their regrets Bosnia & Herzegovina, Ministry of Health Dr. Goran Cerkez, Assistant Minister UNICEF Selena Bajraktarevic, Health & ECD Project Officer SEAN National Coordinator, Bosnia Dr. Smail Zubcevic, Bosnia and Herzegovina National Coordinators Dr. Ariel Como, Albania Dr. Smail Zubcevic, Bosnia and Herzegovina Dr. Krasimira Kastodinova, Bulgaria Dr. Anica Jezic, Croatia Dr. Tatjana Zorcec, Macadonia Dr. Zorica Barac‐Otasevic, Montenegro Dr. Marta Macedoni‐Luksic, Slovenia Dr. Aferdita Uka, Kosovo, sends their regrets Observers Dr. Jasmina Stošid, Croatia Technical Advisors Dr. Andy Shih, Autism Speaks Dr. Amy Daniels, Autism Speaks Dr. Chiara Servili, World Health Organization, sends their regrets International Experts Professor Connie Kasari, University of California, Los Angeles, USA Professor Atif Rahman, University of Liverpool, UK

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MINUTES

Dr. Smail Zubcevic (Bosnia) opened the meeting by thanking everyone for attending.

Dr. Andy Shih (Autism Speaks) then introduced himself and welcomed everyone as well. He thanked

Smail for his work in making the meeting a success. He also introduced Amy Daniels who is now

overseeing the European region for Autism Speaks and mentioned that Simon Wallace had left the

organization.

Dr. Amy Daniels (Autism Speaks) mentioned how pleased she was to participate in the SEAN meeting

and to meet all the National Coordinators. She apologized that Entela was not able to join the meeting

and hoped that she could do a justice today by addressing all of the important items on the agenda. Amy

provided an overview of what was discussed during yesterday’s session and praised the

accomplishments of the government of Bosnia and Herzegovina on the inter-Ministerial collaboration to

develop the national early intervention program. She also provided a brief overview of some of the

developments since the last SEAN meeting, including the passage of a new UNGA resolution on autism in

December 2012, the adoption by the WHO of the Global Mental Health Action Plan, and the World

Health Assembly draft Resolution on Autism that was to be voted on later in the day.

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Presentation: Establishment of sustainable Early Childhood Intervention system in FBiH by Federal

Ministry of Health

Smail provided an overview of the early childhood intervention program. The program started 4 years

ago with an initiative from UNICEF on early detection and intervention on childhood disorders. At that

time a lot of children with developmental delays were being diagnosed too late and would only be

identified when they were tested prior to enrolling in school. Given the evidence that early intervention

could make a difference, the government made a decision to support the development of a national

early intervention system. The first attempt was in 1989 when a developmental center was opened in

Sarajevo.

Smail then provided some context for participation in this project. In previous years a number of projects

were implemented via outside support in Bosnia but none of them were sustained. They were reluctant

to participate in similar projects until UNICEF approached the government of Bosnia and Herzegovina

about this specific project. UNICEF focused all their efforts on working with key stakeholders in

government. In the first years, a working group was formed by the Ministry of Health, Ministry of

Education and Ministry of Social Affairs to develop a policy document. The Ministers worked together to

develop the structure to enable the early detection, diagnosis and treatment. One of the turning points

was when it was decided that the government wanted to focus on systems change and not buildings.

They are now in the final stages of the law. Usually when a law is created, a budget is simultaneously

drafted, and this will be across institutions and systems to enable sustainability. At present, most of the

intervention work is being done by NGOs. The goal is to promote the work of these NGOs by providing

mechanism for the government to support their activities. Smail also mentioned that they hope to

evaluate the program in the next several years.

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General Discussion

Salena Bajraktarevic (UNICEF) offered her observations on yesterday’s meeting. There is now a huge

expectation for us (UNICEF and the government) to provide ongoing support to parents and children.

She mentioned stressed the importance of systems change and to adopting a very broad and very in-

depth consultative process throughout. She also stressed the importance of involving parents and

families in the process, the value of research and that services and policy development must work in

parallel.

Goran Cerkez (Bosnia MOH) welcomed the group on behalf of the Federal Ministry of Health. The

Ministry of Health has more professionals than politicians. He also expressed his pleasure with finding a

great partner in UNICEF, as they have been instrumental not only in the success of the ECI project but

also a number of others (i.e. Growth 20/20 for the entire Southeast European). The ECI project did not

seem like a priority on the onset, but when we started to speak with parents, we learned that it was.

After the first SEAN meeting in Albania, the government started to talk more about autism and

developmental disabilities. Non-profit organizations have been some of the main drivers, and have made

significant contributions to raising awareness. There remains a challenging in incorporating the non-

governmental organizations in the budget system and the government, in partnership with UNICEF, will

continue to work on this issue. Goran also emphasized the need for multinational discussion on these

issues. He also mentioned that spoke briefly with Autism Speaks about providing future technical

assistance.

A discussion followed about the Bosnia ECI project and other countries who were also working on similar

projects.

Jasmina Stošić (Croatia) explained that they are in the beginning of developing a similar project and,

with the help of UNICEF, have put together a working group across sectors to develop models for service

delivery. There are some early intervention services in Croatia but access across the country is a huge

issue. There is also a huge wait in obtaining evaluations and services. There is some progress in Croatia;

they are translating and standardizing the ADOS.

Goran reiterated an earlier comment by Smail that they came to the realization that they did not need to

build new buildings, but rather to build capacity. Goran stressed the importance of working within the

system, particularly in countries of limited resources. He also brought up the challenge of developing a

good community mental health system. The most important strategy is to build knowledge, so that

families and schools in the community can be integrated with the service system. He also highlighted

that there is a lack of special education specialists and that they are not employed by the health care

system.

Smail mentioned that resources are very centralized in one and two cities and reaching all communities

remains a challenge. They are interested in learning more about increasing accessibility and reaching

people in hard to reach areas.

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Goran spoke about Bosnia’s participation in the South East European Health Network (SEEHN), a political

organization comprised of ten countries that meets 2 times a year. He suggested that SEAN become a

member of the network. The next meeting is in Chisinau, Moldova. Goran suggested that SEAN send a

letter.

Andy mentioned that just yesterday he was approached by the director of the SEEHN network, he also

mentioned that SEAN/AS did reach out to SEEHN last year received no response.

Goran mentioned that it may be enough to describe the work of the SEAN network to SEEHN and

volunteered his assistance if SEAN wanted to become a partner.

Dr. Atif Rahman (Expert) praised the accomplishments of Smail, Goran and Selena for their successful

collaborations. Atif’s interpretation was that this was a good example where both policy and service

development for developmental disabilities were operating in parallel. WHO just passed the Global

Mental Health Action Plan and Ministers are actively looking at/for activities to engage in. While ideas

about scaled-up interventions for mental health were only in preliminary stages of development, this is

not really the case for organizations/researchers working in early child development. The general public

also strongly supported the agenda for early child development. The second level is service delivery, and

this is also a situation where child development and autism are ahead of the game.

Goran and Atif commented further about the issue of couching autism within mental health and the

importance of not marginalizing mental illness and to reducing stigma.

Selena also emphasized that their work was not solely in the realm of health care, and the use of the

term “diagnosis” may not be the most appropriate. It is important to take into consideration child

functioning, and all sectors should work together to address this.

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National Coordinator presentations on autism [available on SharePoint site]

Ariel Como, Albania

Arial provided an update on the regional center in Tirana, initiatives in other cities and the work of

private, non-governmental organizations. He described that a lot of resources on indirect services for

autism have been expended in the last year, but that the resources that families expend to care for

children with autism are also considerable. There has been a doubling of the number of professionals

working in autism in public and non-public initiatives. He spoke about the installation of telemedicine for

training and clinical supervision. They (ACF) have introduced the ADOS with on-sight training and

consultation, supported by experts. They are collecting public health data through primary care physician

screening of 2-year old children, using the M-CHAT. Ariel also provided an overview of the country’s

WAAD activities, including Light it Up Blue, media exposure and meeting hosted by Dr. Berisha for all UN

ACTION ITEM #1: SEAN Secretariat will work with Goran to reach out to the SEEHN network for

regional collaboration.

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agencies about the new UNGA Resolution on autism. He urged NCs to consider the use of telemedicine

to share resources/information across the region.

Smail Zubcevic, Bosnia and Herzegovina

Smail provided an overview of the characteristics of Bosnia and Herzegovina- population of 4 million;

consists of two entities – Bosnia and Herzegovina and the Republic of Serbska; and an estimated 900K to

1 million children and adolescents. The estimated prevalence of autism in Bosnia is 1 in 500, but this is

likely an underestimate. There are a number of challenges to the diagnosis of autism, but fear of

diagnosing should not be one of them. Less damage is being done in putting children that are really not

on the autism spectrum into early intervention procedures, than adopting a "wait and see" approach.

Stigma is related to this fear of misdiagnosis. There were a number of new autism-related activities since

the last year including a Master’s thesis on geo-mapping of autism, WAAD, a new clinic for autism at the

pediatric hospital, and increasing media coverage. They are trying to make media partners in this process

and not just seekers of bad news. Smail was impressed with the technology activities that Albania is

engaged in and also feels like this would be a useful area to explore. The importance of not solely relying

on the ADOS to make a diagnosis was also highlighted.

Ariel agreed that the community shouldn’t rely solely on ADOS; it is only part of the diagnostic process.

Krasimira Kastodinova, Bulgaria

Krasimira presented data on a number of health care conditions, including mental health, collected by

the National Statistical Institute and the NCPHA, the number of children diagnosed with PDD, who are

liable to dispensarization. There is currently no epidemiologic data for autism, nor screening at this time.

Many children have not been diagnosed because of a lack of resources. The country does have strong

legislation (national strategies and programs) for people with disabilities, which includes a National

program for guaranteeing the rights of children with disabilities and National Mental Health Policy. She

described all of the other legal provisions across sectors for individuals with disabilities. The Ministry of

Education, Youth and Science has developed a project for new educational law, which provides much

activities for inclusive education of children with disabilities. Services for people with autism (Centers for

rehabilitation and social integration, Day care centers, Centers for early intervention) are funded by

NGOs, municipalities and the state. Financing for mental health is decentralized at the municipality level

according to the needs of the region. Multisectoral working group to the Ministry of Health, on the bases

of analyses of the current situation, has developed a document similar to the national action plan, which

contains activities to improve care for people with autism including screening, diagnosis, early

intervention, staff training, etc. The timeline for implementation is 2013 to 2016. SEAN participation was

a primary motivator for celebrating WAAD from government establishment (NCPHA) with the

partnership of NGO and National Pediatric Association, which included an art exhibition, a conference of

over 200 pediatricians and raising awareness of professionals from the primary healthcare setting.

Anica Jezic and Jasmina Stošić, Croatia

The government has both a moral and legal obligation to address the needs of children with autism,

starting with the ratification of the CRPD and the CRC. There is an estimated 4.4% of children with

disabilities in registry, with 1,200 with ASD (also have poorer quality of life). They also found that parents

of children with ASD had a significantly lower quality of life and poorer health status than parents of

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children without disabilities. In response to these needs, Croatia developed a coordinating body to

develop a national strategy for autism in Croatia working in close partnership with the Autism Centre.

The participation of the MOH is to improve the health care system and focus on early detection,

diagnosis and treatment. In addition, the Ministry of Social Policy and Youth is preparing the new law for

inclusive support that will be based on the assessment of needs and functioning of persons with

disabilities. The process will be carried out in close participation with parents, is multi-sectoral and will

focus on early intervention services. The services system includes programs by NGOS, institutional-based

programs and programs in private practices. There is overall a lack of coordination across service

providers and most programs lack evaluation. EI services are regulated by the Social Welfare Act (2011)

and can be home or institution-based; therefore, the country is working on deinstitutionalization and

focusing on building up their systems of community care.

Tatjana Zorcec, Macedonia

The University children’s hospital in the capital is the one and only tertiary referral center in the country.

In the department of psychophysiology, clinicians evaluate and treat all chronically ill children and

children with developmental disorders. Tanja provided an overview of the instruments they use in the

Department as well as the type of treatment provided. There is a lack of instruments for screening and

diagnosis of ASD, but Tanja is very interested in focusing on this issue in the near future. Despite a

documented increase in rates of autism, there is no registry and a lack of screening/evaluation tools and

services/resources for autism. However, increasingly more children are being diagnosed and their ages at

diagnosis are decreasing. The first wife announced a new center for autism in Tanja’s hospital, but plans

are only just underway. Macedonia is part of a trans-European initiative – Enhancing the Scientific Study

of Early Autism - Cost Action (EU funded) which is a network of countries dedicated to improving

research and services for autism (includes 50 scientists from 20 European countries, and has 4

workgroups – at risk siblings, new technology, screening and early intervention).

Zorica Barac‐Otasevic, Montenegro

Montenegro is the smallest and newest country in Europe. Zorica’s presentation focused on

advancement of the rights of individuals with autism. There was considerable media attention in

Montenegro last year in the topics of autism, early intervention, therapy and possibilities for work in

country. A law was recently passed that allows parents of individuals with disabilities to retire after

working for 20 years. A number of new daycare centers have opened in the country. She also described

the work of Association for help to persons with autism and the struggle the organization had to support

the rights of individuals with autism over the years since its establishment. A number of these efforts

culminated in the publication of a book – “Autism psychological ghetto.” There is an increase focus on

rights of individuals with autism and their families.

Marta Macedoni‐Luksic, Slovenia

The systematic health care for children with autism started in 2005. Precise information on the number

of children with autism is unknown. She reiterated the importance on improving existing services

(“improve what we already have”). In 2008, a national team for ASD at the University Pediatric hospital

was established. One of the major limitations of this initiative is that, while it is good for diagnosis, it is

not so good for interventions and socialization. In addition, there is little focus on the care of adults with

autism. The country has a significant need for respite services. It is very hard to hospitalize children with

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autism; Marta then described some of her research, including a study on chemical exposure and autism.

At the Institute of ASD, the focus is on the education of parents and professionals. There have been some

changes in educational programs including implementation of ABA in school setting, education of

professionals in west region, and new legislation on ASD in education (not yet implemented).

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Discussion of country presentations/Question and answer session about SEAN objectives

Amy thanked all the National Coordinators for presenting on their countries. She mentioned that there

was considerable overlap with respect to needs and challenges. There seemed to be a lot of similarities

across countries with respect to increasing awareness and focusing on the rights of individuals with

autism. There also seemed to be an interest in moving away from “diagnosis” and focusing more on child

functioning and ability. And lastly sustainability came up as a cross-cutting issue for many countries.

Atif commented on the issues of ‘coverage’ and ‘penetration’. By coverage, we mean how much access

do programs have to the entire population? By penetration, we mean how much is a family accepting of

an intervention and able to do implement the intervention in a sustainable way? Both coverage and

penetration should be considered when developing programs. Sustainability is the overall goal.

Smail’s sense is that it is unacceptable to work on something that is not sustainable and urged everyone

to think first about sustainability and then everything else. The importance of transparency and for

systematically (and independently) evaluating a project and how resources are spent was also stressed.

Resource-limited countries should also be central to the process.

Andy asked the group to think about the necessary processes to obtaining sustainability.

Marta agreed with Smail; any action should be done with representation from the country and with

effective coordination.

Andy mentioned that he was struck by Smail’s earlier comment about how the government stepped in

and took ownership of the project. Is this government involvement a necessary step?

Smail also highlighted the importance of putting something into law so that there is a budget for it and

that outside money will not produce sustainable results. When the government finances this, it puts

things into perspective.

Atif suggested that organizations like Autism Speaks can help with research that informs sustainability

and scalability of projects. Every project should ask the questions, is it scalable? Is it sustainable? That

would drive the direction of the process.

Andy explained that this is something that Autism Speaks has always leveraged (i.e. Autism Speaks co-

funds meetings). Andy also learned that just because there is a law that doesn’t mean there is money.

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Jasmina mentioned that there were existing laws related to children’s rights, but parents do not benefit.

Autism is recognized, but there isn’t support. Just having the law doesn’t mean there’s funding.

Smail mentioned sense that these laws are not good; that they are not specific enough.

Anica mentioned that it is challenge to start new initiatives in a country, but you need funding, and most

of the time, the government doesn’t have it.

Smail agrees that it would be ideal if there were new resources, but it doesn’t happen that way. New

interventions should be built onto to an existing system.

Jasmina described that this was how they were working with UNICEF in Croatia. UNICEF has told them,

“we are just supporting the project, and we want to make sure that you [ministries] are participating

throughout the process.”

There was further discussion between Smail and Jasmina regarding the level of individuals’ from the

government sectors involved. Smail stressed the importance of involving deputy ministers and that little

could be achieved with lower level professionals or those without a certain amount of influence.

Dr. Connie Kasari (Expert) asked where the parents are in this process. She described that, in the US,

when you provide legal empowerment to the parents; they become the advocates and the “sustainable”

part of the system.

The discussion then shifted from sustainability and government buy-in to the involvement and parents,

advocacy organizations and NGOs and the question of how to bring all of these groups together. Jasmina

mentioned that in Croatia, there is virtually an NGO for every person, and that there is no uniform voice

among them. Zorica also described her experience with NGOs in Montenegro.

Krasimira said that some kind of competition between NGOs is observed, including when they look for

government support and according to her it is important to co-operate their efforts because of the

common goal and cause. In this way a dissipation of resources will be limited.

Andy mentioned that there was a similar issue in the United States, and they could never move the

government because they all had different priorities, then autism speaks came on the scene with

resources.

Smail asked whether Andy could create an Autism Speaks in Bosnia and Herzegovina. There is a

challenge, not all groups are reliable partners; it is not possible to work with all of them.

Ariel mentioned that parent organizations are only one part of the discussion, and that their

involvement and perspectives have changed over time. Parents think that having projects may be a

source for raising money. There was a phase where money was coming for small projects. In the public

opinion, the question now is where is the government? Then there was this period of money moving

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from international groups to the government. In Albania, now parents are thinking in terms of the same

terminology, scalability or sustainability.

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Presentation and discussion of SEAN pan-network activity [Presentation available on SharePoint site]

Amy provided an overview of the proposed SEAN activity, including a rationale for implementing a

regional survey on parent needs, challenges with study methodology including defining the target

population, sampling, format, and key topics. Major topics could include family demographics, diagnostic

history, service use, perceived need, stigma, challenges and priorities. A list of questions to stimulate

discussion was presented at the end of the presentation.

Amy also thanks Connie and Atif for their participation in the day’s meeting and also stressed that the

role of Autism Speaks was to facilitate and that the meeting was for the SEAN countries themselves.

Dr. Tatjana Zorcec described her participation in a similar exercise before. One of the most interesting

findings from the survey was how common medication was used to treat autism. Compared to the rest

of Europe, Macedonia does this with a lot more frequency. Tanja mentioned that Macedonia was the

only SEAN country that participated in this survey, so she would be interested in seeing something

similar in the other SEAN countries.

Jasmina and Anica agreed that the survey would be useful, but wanted to make sure that the questions

are understandable to parents. She also mentioned that it would be challenging to cover all regions. But,

she did say that they have post-graduate students who are very eager and would be interested in

working on this as part of their work. Jasmina also spoke about her work with focus groups and in-depth

interviews.

Marta also agreed that it would be an important project and that it would be good to get the results by

the end of the year.

Jasmina suggested needed to change some of the questions to be more culturally appropriate and

understandable to parents, and that finalizing this before the end of the year would be a good idea.

Smail raised a concern about sampling and the bias that may be introduced. This was followed by a

detailed discussion of strategies to capture the most useful information and not introduce too much

bias.

Connie thought that the family is missing in all of this. She spoke about her experiences in conducting a

focus group study where she asked low resource families to provide their perspectives. Connie also

suggested that we look into the Eco-Cultural family interview.

Jasmina brought up the issue that families without a diagnosis will not be included, and Zorica

mentioned that this may be restricted to families with resources only.

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Atif agreed that sampling is a major hurdle, and that it was important to start with the sampling frame,

and then this will inform the timeline. He also made other suggestions like conducting a mapping of

available services, working with key informants to identify needs and using a mix-methods approach to

identify priorities and strategies.

Zorica mentioned that there was a survey on the UNICEF website that might be useful to review.

Marta commented that it was a great idea to do this, because as providers there is only so much we

know about, so it would be good to get at the perspective of parents.

Connie and Atif suggested that it would be good to know what has been done already, and Tanja spoke

about her experience on the trans-European study.

Andy recalled the last SEAN meeting and the interest of countries to engage in a network activity. One of

the primary goals of this exercise would be to build cohesion across the network. The other goal is to

communicate to parents that we are doing something and that understanding their needs is our primary

goal. This project may also help us secure funding in the future.

Discussion about how to reach out to families followed. Jasmina mentioned that it is possible to reach

out to families that do not have services, because most come to Zagreb to receive a diagnosis. And

Marta also suggested working through parent associations as well. Krasmira mentioned that it will be

difficult to finish the survey to the end of this year because in their organization (NCPHA) the survey

process must be planned and accepted and concerted with the Ministry of Health first, because of

financial reasons. She expressed the opinion that it isn’t necessity to do representative study on this

stage and pilot such. She mentioned that she should also be able to get support from the parent

associations in doing the survey.

Arial saw the idea as an exercise for SEAN, to see how far we can go in a joint activity. He also thinks it

would be good to publish the data and agrees that it is important to think about how samples can be

selected to create the least amount to bias.

Marta suggested that the questions would include asking about what kind of services people have, are

people satisfied with that? Marta suggests to sending to parent association, then another parent

association, another clinic, and Marta’s clinic. This will help adjust for some of the bias.

Smail commented that there may be a tendency to have a questionnaire completed by those of higher

socioeconomic status and suggested that they be completed by trained personnel, so that the quality is

better.

Atif suggested that another way to look at this would be through schools. It may be possible to do

snowball sampling, and ask the children to take the questionnaire to their parents. Atif had some

experience doing this in Rawalpindi..

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There were additional suggestions on how to reduce bias: Marta mentioned it would be possible to

capture socioeconomic status and that individuals that come to the hospital in Slovenia are of all SES

levels; Jasmina suggested using students to deliver the questionnaire; Atif suggested using some sort of

stratified sampling that accounted for SES, distance from the center, etc.

Atif asked what everyone knew about the WHO Atlas for Child Mental Health., and Amy mentioned that

the Child Atlas is similar to the broader Atlas project and WHO-AIMS insofar as it is an inventory of

mental health services, but doesn’t look at family needs from the perspective of the families themselves,

and it is not specific to autism.

The group also discussed the importance of uniformity in sampling and survey content across countries,

particularly if it is a priority to make comparisons within SEAN. Connie suggested that it also might be

useful to have addendums on different subject areas that people could use.. And Ariel mentioned that

there has been nothing done on stigma, so this would be a useful exercise.

Andy reminded everyone that the Network was formed based on similar cultural heritage, similar

language, etc. Maybe another goal of the survey can identify what the common challenges are. Helping

to identify these challenges can give us an idea of what to focus on in future Network activities.

Atif suggested that it would be good to have a section on the organization itself to understand the

characteristics of the organization, and to provide some suggestions on the types of organizations should

complete the data.

The question of whether a survey for parents was the most appropriate way to go was then raised. For

example, Atif suggested that it may be necessary to do a qualitative study to inform the need for or

content of a survey. Andy raised the issue of limited resources. Connie mentioned that something like

this could be optional and that there were different ways to collect important qualitative information, via

focus groups, town hall meetings, etc.

Smail reiterated the importance of generating and delivering a survey where results can be compared

across countries and to make sure that bias is minimized. He suggested that the guidelines on survey

implementation also be developed, and the National Coordinators agreed that this would be very useful

information.

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ACTION ITEM #2: Autism Speaks will conduct background research on what has already been

done in the region to assess needs of families affected by autism, consult with epidemiologist

about sampling frame, and provide guidelines and updated survey draft to National Coordinators

for review.

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SEAN – Where are we now and where are we going? General discussion

Amy reviewed the objectives of the meeting which, in addition to the discussion on the Network Activity,

also included: discussion of priorities and opportunities for collaboration as related to the SEAN mission,

brainstorming opportunities for funding, and creating a mechanism for ongoing communication.

Ariel suggested using teleconferencing to make discussions more frequent. Technology doesn’t have to

be used simultaneously; it is not necessary to use advanced technology.

Jasmina mentioned that building the survey will be a good exercise for the network

Smail brought up the issue of communication and suggested creating a monthly or quarterly bulletin to

highlight activities/updates in each SEAN country. If this is turned into a PDF, then it can also be shared

with the Ministries.

Connie asked if SEAN had a listserv, and Amy mentioned that we have a SharePoint site but we could

also create a bulletin and listserv.

Atif also brought up mHealth. There is rapidly advancing literature on mHealth in low and middle income

settings. The field has really developed in perinatal field and HIV. If people are interested in different

applications of technology and health, this might be something good to get into.

Andy mentioned that there were potential donors and funders that Autism Speaks could take a network

proposal to, but asked the group to consider what we would want to fund.

Smail brought up the Rotary Club. They have been active in supporting child development activities in

Bosnia in the past and may be willing to support a SEAN activity.

Zorica brought up the lottery another possible funding source, and Smail mentioned that they had will

work with the mobile phone company for national autism day, but there is a challenge in the distribution

of the money.

Jasmina mentioned that there are some companies in Croatia that have donated small amounts of

money, and that government ministries funds for which organizations can apply. She also mentioned that

the lottery is another source, and that the Rotary Club was active in Croatia.

Marta mentioned that the Lyons club also supporting some of these activities. Last year we spoke about

working on some projects. We need someone to be responsible for this for the group.

ACTION ITEM #3: Autism Speaks and the SEAN Secretariat will with Smail to develop a draft of

the first newsletter to be distributed to SEAN National Coordinators and shared with

government Ministries of SEAN countries.

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The group then discussed the importance of working through the Secretariat in identifying funding

sources and a network project. Amy asked whether there should be a point person on this and on the

survey, but didn’t pressure anyone to respond immediately.

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Administrative issues

Amy pointed out the SharePoint instructions in the packet and asked everyone to review them. She also

asked all the NCs to review the Terms of Reference for SEAN and to send official approval of the TORs to

Entela. Before initiating a discussion on new countries, she also described the initiative at the World

Health Organization’s Department of Mental Health and Substance Abuse to collect child mental health

policies.

New countries

Smail thinks that adding more countries would enrich the network. Bosnia has worked with a couple of

University from Italy and has good collaboration with others at the University level. Marta also

mentioned that she had experience working in Italy establishing the first community mental health

center in Montenegro.

Smail mentioned that Romania is developing a large network of child neurology, so the sense is that they

have some resources to deal with these countries. Smail knows a lady from Italy who is one the board

European board of Child Neurology and National Councils.

Ariel suggested that it may be useful to communicate the benefits of joining, i.e. the survey can be used

this as an incentive to join the network.

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ACTION ITEM #4: The SEAN Secretariat and Autism Speaks will work with each National

Coordinator to identify potential sources of funding (i.e. Rotary Club, Lyons Club, Lottery, etc.)

for Network project

ACTION ITEM #6: SEAN Secretariat will update National Coordinators of network on new

countries invited to join Network

ACTION ITEM #5: National Coordinators will review the TORs, provide any feedback and send

official approval letters from MOH to SEAN Secretariat.

14

Closing remarks

Smail mentioned the participants surpassed expectations, and that the meeting would not go unnoticed.

This conference is a breakthrough for public awareness. They are also interested in hosting additional

meetings in the future.

Andy thanked every for their contributions. He mentioned that Entela/Autism Speaks would follow-up

with emails. Andy mentioned that he would also follow-up with more information on the World Focus

event. He also mentioned that they would actively look for alternative funding sources.

Marta mentioned that the meeting was even better than last year’s, and Jasmina expressed her

gratitude for attending the conference and mentioned that everything was very inspiring and that it was

great to get to know everyone at the meeting.

ACTION ITEM #7: Autism Speaks will provide additional information on World Focus Event to all

National Coordinators