Ilia State University

1





Issue I 2014
POLICY REPORT OF THE PUBLIC POLICY RESEARCH
AND TRAINING CENTER
SURVEY OF HEALTHCARE AND EDUCATIONAL SERVICES FOR
INDIVIDUALS WITH AUTISTIC SPECTRUM DISORDER (ASD)
2
Mission of the Public Policy Research and Training Center
Public Policy Research and Training Center (PPRTC) of t S a i l I ate University was founded in
November 2013 and is focused on supporting development of public policy research in
Georgia through capacity building of research personnel and public servants, conducting
evidence-based analytical studies and ensuring highly qualified targeted short-term training
courses.
This publication was made possible with the generous support of the Policy, Advocacy, and Civil
Society Development in Georgia (G-PAC) project, which is implemented by the East West Manage-
ment Institute (EWMI) and funded by the American people through the United States Agency for
International Development (USAID). The views expressed in this publication are those of the authors
and do not necessarily reflect the views of G-PAC, EWMI, USAID, or the US Government.
This publication was made possible within the framework of the grant program of G-PAC
project of East-West Management Institute (EWMI), funded by the USAID. Views expressed
herein are those of the author and do not reflect opinions of EWMI, G-PAC, USAID or the US
Government.
Survey of healthcare and educational services for individuals with autistic specter
disorder
Introduction and Summary
Table of Contents
Executive Summary .......................................................................................................................................................... 4
Issue/Problem Statement and Justification ........................................................................................................... 5
Methodology of the research project ........................................................................................................................ 5
Results of the Survey ....................................................................................................................................................... 6
Main findings ........................................................................................................................................................................ 8
Conclusion and Recommendations ....................................................................................................................... 10
Sources used and additional sources ................................................................................................................... 12
About Author ..................................................................................................................................................................... 16









Ilia State University
3
Mission of the Public Policy Research and Training Center
Public Policy Research and Training Center (PPRTC) if Ilia State University was founded in
November 2013 and is focused on supporting development of public policy research in
Georgia through capacity building of research personnel and public servants, conducting
evidence-based analytical studies and ensuring highly qualified targeted short-term training
courses.
Survey of healthcare and educational services for individuals with autistic specter
disorder
Introduction and Summary
Table of Contents
Executive Summary ................................................................................................ .......................................................... 4
Issue/Problem Statement and Justification ........................................................................................................... 5
Methodology of the research project ........................................................................................................................ 5
Results of the Survey ................................................................................................ ....................................................... 6
Main findings ................................................................................................ ........................................................................ 8
Conclusion and Recommendations ....................................................................................................................... 10
Sources used and additional sources ................................................................................................................... 12
About Author ................................................................................................ ..................................................................... 16









4


Executive Summary
The goal of the survey was to study resources needed for conducting abilitation of process for
Autistic Spectrum Disorder (ASD) in line with international standards. The survey has shown
that resources and willingness required for resolving the issue of autism is very limited on a
governmental or non-governmental level. None of the services provided by the existing state
programs or NGOs ensure even minimal standards of international research standards
required for abilitation of individuals with autism, meaning full, early diagnostics, assessment,
proper program assurance and optimal intensity of the intervention. As a result, the outcome is
even worse. Survey has shown that individuals with autism are not granted a status based on
their diagnosis, there is no correct policy or legislation adapted to their specific needs,
infrastructure is underdeveloped. Therefore, involvement of the government in resolving
problems associated with people with autism is minimal. There is also a very low level of
awareness of parents that is a necessary precondition for timely identification of risk-groups,
their diagnostics and effective abilitation. There is a lack of qualified personnel, while
purchasing, translation and adaptation of required screening, diagnostic and assessment
instruments is also associated with problems. There is an obvious lack of communication and
coordination between the Ministry of Labor, Health and Social Protection and Ministry of
Education and Science of Georgia as well as other concerned ministries and NGOs working
on the issues of autism. Even though there are no autism-adapted state programs, the survey
has shown that it is possible to develop/activate sub-programs within the framework of already
approved state budget, which could increase involvement of the state in resolving this issue as
much as possible.
Based on all of the above findings, number of recommendations has been created for the
Ministry of Labor, Health and Social Affairs as well as Ministry of Education and Science,
which should support resolution of the issues related to autism at this stage. More specifically:
1) According to international data, one of every 6 children with disability has autistic disorder,
which is 17%, meaning that 17% of the funds allocated for early intervention for rehabilitation
of people with disabilities should be allocated for autism; 2) New, specific needs-tailored sub-
program should be developed; 3) National guidelines need to be developed and approved; 4)
State policy no managing autistic disorders should be prepared along with relevant legislation;
5) Qualified personnel should be prepared to work with individuals with autistic disorders, as
there is a growing demand for such individuals; 6) Equip and adapt educational establishments
and educational process according to the needs of these individuals; 7) Correct resolution of
all of these issues means coordinated collaboration of specialists and the two ministries and
NGOs working on autism issues.
Issue/Problem Statement and Justification
Today, autism is one of the severe problems of the world. It turns out that the number of such
individuals increases each year for reasons yet to be identified (see Diagram 1).
Individuals with autistic disorders are not granted status of persons with disability based on
their diagnosis.
Various research conducted in USA has shown that early, adequate and intensive intervention
to autism significantly improves the outcome within the first 2 years. 48% of children who
started applied behavior analyses-based (ABA) behavioral therapy at the age of 18-30 months
practically lose the diagnosis, while the condition of the other 52% significantly improves
(Maurice, Green & Luce, 2012).
Based on this, it is important to develop services for people with autism using both state as
well as NGO efforts and support, which raises the need for surveying resources, services and
experience in the country. No such research has been conducted before, which underlines its
importance even more.
As it was mentioned above, it is important to develop services tailored specifically to the needs
of individuals with autism.
There is a list of preconditions that need to be considered in order to develop correct policy for
managing autism:
- Timely diagnostics
- Perfection of educational system for pre-school age children with autism
- Adapting educational process of school-age children of autism on their needs
- Preparation and training of specialists
- Increasing awareness of public and families
- Supporting coordinated work of state and NGO structures working on autism and their
capacity-building
- Quality control of services provided.
Methodology of the research project
Given project was focused on surveying state and NGO services and resources offered to
individuals with Autistic Spectrum Disorder (ASD) disorder in Georgia. Therefore, the
objectives of the survey were to study existing public information along with services provided
by state programs and leading service providers in the given field.
Study of the public information was conducted using information provided on the web-page of
the Ministry of Labor, Health and Social Protection and Ministry of Education and Science of
Ilia State University
5


Executive Summary
The goal of the survey was to study resources needed for conducting abilitation of process for
Autistic Spectrum Disorder (ASD) in line with international standards. The survey has shown
that resources and willingness required for resolving the issue of autism is very limited on a
governmental or non-governmental level. None of the services provided by the existing state
programs or NGOs ensure even minimal standards of international research standards
required for abilitation of individuals with autism, meaning full, early diagnostics, assessment,
proper program assurance and optimal intensity of the intervention. As a result, the outcome is
even worse. Survey has shown that individuals with autism are not granted a status based on
their diagnosis, there is no correct policy or legislation adapted to their specific needs,
infrastructure is underdeveloped. Therefore, involvement of the government in resolving
problems associated with people with autism is minimal. There is also a very low level of
awareness of parents that is a necessary precondition for timely identification of risk-groups,
their diagnostics and effective abilitation. There is a lack of qualified personnel, while
purchasing, translation and adaptation of required screening, diagnostic and assessment
instruments is also associated with problems. There is an obvious lack of communication and
coordination between the Ministry of Labor, Health and Social Protection and Ministry of
Education and Science of Georgia as well as other concerned ministries and NGOs working
on the issues of autism. Even though there are no autism-adapted state programs, the survey
has shown that it is possible to develop/activate sub-programs within the framework of already
approved state budget, which could increase involvement of the state in resolving this issue as
much as possible.
Based on all of the above findings, number of recommendations has been created for the
Ministry of Labor, Health and Social Affairs as well as Ministry of Education and Science,
which should support resolution of the issues related to autism at this stage. More specifically:
1) According to international data, one of every 6 children with disability has autistic disorder,
which is 17%, meaning that 17% of the funds allocated for early intervention for rehabilitation
of people with disabilities should be allocated for autism; 2) New, specific needs-tailored sub-
program should be developed; 3) National guidelines need to be developed and approved; 4)
State policy no managing autistic disorders should be prepared along with relevant legislation;
5) Qualified personnel should be prepared to work with individuals with autistic disorders, as
there is a growing demand for such individuals; 6) Equip and adapt educational establishments
and educational process according to the needs of these individuals; 7) Correct resolution of
all of these issues means coordinated collaboration of specialists and the two ministries and
NGOs working on autism issues.
Issue/Problem Statement and Justification
Today, autism is one of the severe problems of the world. It turns out that the number of such
individuals increases each year for reasons yet to be identified (see Diagram 1).
Individuals with autistic disorders are not granted status of persons with disability based on
their diagnosis.
Various research conducted in USA has shown that early, adequate and intensive intervention
to autism significantly improves the outcome within the first 2 years. 48% of children who
started applied behavior analyses-based (ABA) behavioral therapy at the age of 18-30 months
practically lose the diagnosis, while the condition of the other 52% significantly improves
(Maurice, Green & Luce, 2012).
Based on this, it is important to develop services for people with autism using both state as
well as NGO efforts and support, which raises the need for surveying resources, services and
experience in the country. No such research has been conducted before, which underlines its
importance even more.
As it was mentioned above, it is important to develop services tailored specifically to the needs
of individuals with autism.
There is a list of preconditions that need to be considered in order to develop correct policy for
managing autism:
- Timely diagnostics
- Perfection of educational system for pre-school age children with autism
- Adapting educational process of school-age children of autism on their needs
- Preparation and training of specialists
- Increasing awareness of public and families
- Supporting coordinated work of state and NGO structures working on autism and their
capacity-building
- Quality control of services provided.
Methodology of the research project
Given project was focused on surveying state and NGO services and resources offered to
individuals with Autistic Spectrum Disorder (ASD) disorder in Georgia. Therefore, the
objectives of the survey were to study existing public information along with services provided
by state programs and leading service providers in the given field.
Study of the public information was conducted using information provided on the web-page of
the Ministry of Labor, Health and Social Protection and Ministry of Education and Science of
6
Georgia together with analysis of the appropriate legislation. More specifically, the research
team studied state programs and sub-programs, laws, normative acts and resolutions that are
somehow associated or can be associated to the needs of people with autism.
With the purpose of studying services provided to such individuals 16 interviews were
conducted in Tbilisi and Batumi (see Annex 1: Main Questions of the Interview). Participants of
the interviews were representatives of both state and non-state actors (see Annex 2: List of
Respondents).
Results of the Survey
The survey has shown that the Ministry of Labor, Health and Social Protection is implementing
a two-direction state programs that covers services for individuals with ASD. One direction is
health programs, which cover autism screening and diagnostics, while another is programs of
social protection, which ensure various directions of abilitation and rehabilitation of people of
disabilities, partially including people with autism. Assessment of both directions has identified
4 sub-programs that are most relevant for the needs of people with autism:
1. Nosologies defined through childrens psychical health component; autism is part of F84
(ICD-10) - psychical development disorders. This program is divided by: childrens
development disorder, early identification and screening, including 0-6 age children
development disorder and screening, which costs 123 GEL, and prevention of mild and
average mental developmental disorders, within the framework of which 108 GEL is
allocated for each of the children (Resolution of the Government of Georgia #279,
October 31, 2013). There are no standard guidelines to regulate services provided by
this sub-program. This program is studies/diagnoses psychical health of children and
adolescents of 0-18 age in day stationary. During the interview Chief Specialist of
Healthcare Department has noted that the cost of this 5-day program per person is 466
GEL, number of individuals is not defined, and therefore, no monthly cost could be
identified. Head of Childrens Neurology and Neurodevelopment center has noted that
this is childrens psychical health sub-program that covers 27 children per month.
Almost half of children within this sub-program have ASD. Others have various
diagnostics and balance is maintained as much as possible. In total, since 2009 they
have treated 300-350 children, but there is no exact statistics available. If a child is
considered as a risk group, he/she is enrolled in this program.
2. Early development sub-program, which is about servicing children with early
development disorders of age 0-7 for 8 hours per month. Payment takes place using
vouchers, so called materialized vouchers. Total annual cost of the programs is
223,000 GEL and maximum number of beneficiaries for 2013 is 150 children. The cost
of voucher is 144 GEL, which is 21,600 GEL for 150 children per month. This program
works well enough, although it cannot ensure appropriate minimal intensiveness for
individual therapy, which is necessary for ASD individuals (at least 25 hours per week).
3. Day Center sub-program, which is meant for children and adolescents between 6-18 of
age. Daily funding is now 11 GEL, annual budget is 3,184,800 GEL, while monthly
funding is almost 31,8480 GEL. Services provided in this sub-program are non-specific
and not priority for successful abilitation of ASD children, since aside from meals three
times a day they need specific, mainly educational, skills and needs-based abilitation.
4. Screening of developmental disorders of 0-6 aged children, which is implemented within
the framework of early detection and screening sub-programs. Assessment of global
development of high-risk and premature children is conducted using special
questionnaires and screening tests, the budget of which is 221 GEL per child and
serves 60 children per month, with monthly budget of 13,260 GEL. This sub-program is
implemented by the Institute of Neurology and Neuropsychology, and Childrens Central
Hospital named after Iashvili (Ministry of Labor, Health and Social Protection of
Georgia, Response of Darakhvelidze, Head of Healthcare Department N01/3616;
January 17,2014).
At the moment this program works effectively enough, although for its full use it would
be appropriate to use all instruments of international assessment standards, majority of
which are not yet translated and adapted.
Interviews with different representatives of the Ministry of Labor, Health and Social Protection
has shown that in accordance with the law on general education and national educational plan
any child with specific educational needs, including those with ASD are ensured with individual
educational plan and consulting/assistance of special teacher or school psychologist. This
service does not include appropriately intensive training/classes for ASD individuals, although
it is a good fact that the Ministry of Education works in this direction and with its effort in 2013,
for the first time in Georgia, in public school 166 a pilot integrated class for ASD children of 1-6
grades was created. 5 specialists work with 11 students in the class, although this not
sufficient. It is also difficult to talk about success/failure, since the class started to function in
October 2013 only.
Interview with the head of Coordination and Monitoring Group of Pre-school Development
Division of the Ministry of Education gave a good picture of educational aspects in pre-school
institutions (kindergartens). More specifically, kindergartens, since 2006 have fully been
transferred to the management of the local governances and municipalities. At the moment
educational and general needs of the kindergartens are decided by specific municipalities and
mayors offices of towns. Ministry of Education of Georgia is authorized to only give
recommendations regarding educational issues, and municipalities are authorized to consider
them as they deem necessary. There is no unified standard of pre-school education in Georgia
at the moment, so inclusion of ASD children in pre-school education is only ensured in
separate regions within the framework of inclusive education program.
Meeting with representatives of Social Agency and Social Department of the Ministry of Labor,
Health and Social Affairs has shown that in Tbilisi and Batumi same state sub-programs are in
action to cover ASD services. The main difference in case of Batumi is that Social Department
Ilia State University
7
Georgia together with analysis of the appropriate legislation. More specifically, the research
team studied state programs and sub-programs, laws, normative acts and resolutions that are
somehow associated or can be associated to the needs of people with autism.
With the purpose of studying services provided to such individuals 16 interviews were
conducted in Tbilisi and Batumi (see Annex 1: Main Questions of the Interview). Participants of
the interviews were representatives of both state and non-state actors (see Annex 2: List of
Respondents).
Results of the Survey
The survey has shown that the Ministry of Labor, Health and Social Protection is implementing
a two-direction state programs that covers services for individuals with ASD. One direction is
health programs, which cover autism screening and diagnostics, while another is programs of
social protection, which ensure various directions of abilitation and rehabilitation of people of
disabilities, partially including people with autism. Assessment of both directions has identified
4 sub-programs that are most relevant for the needs of people with autism:
1. Nosologies defined through childrens psychical health component; autism is part of F84
(ICD-10) - psychical development disorders. This program is divided by: childrens
development disorder, early identification and screening, including 0-6 age children
development disorder and screening, which costs 123 GEL, and prevention of mild and
average mental developmental disorders, within the framework of which 108 GEL is
allocated for each of the children (Resolution of the Government of Georgia #279,
October 31, 2013). There are no standard guidelines to regulate services provided by
this sub-program. This program is studies/diagnoses psychical health of children and
adolescents of 0-18 age in day stationary. During the interview Chief Specialist of
Healthcare Department has noted that the cost of this 5-day program per person is 466
GEL, number of individuals is not defined, and therefore, no monthly cost could be
identified. Head of Childrens Neurology and Neurodevelopment center has noted that
this is childrens psychical health sub-program that covers 27 children per month.
Almost half of children within this sub-program have ASD. Others have various
diagnostics and balance is maintained as much as possible. In total, since 2009 they
have treated 300-350 children, but there is no exact statistics available. If a child is
considered as a risk group, he/she is enrolled in this program.
2. Early development sub-program, which is about servicing children with early
development disorders of age 0-7 for 8 hours per month. Payment takes place using
vouchers, so called materialized vouchers. Total annual cost of the programs is
223,000 GEL and maximum number of beneficiaries for 2013 is 150 children. The cost
of voucher is 144 GEL, which is 21,600 GEL for 150 children per month. This program
works well enough, although it cannot ensure appropriate minimal intensiveness for
individual therapy, which is necessary for ASD individuals (at least 25 hours per week).
3. Day Center sub-program, which is meant for children and adolescents between 6-18 of
age. Daily funding is now 11 GEL, annual budget is 3,184,800 GEL, while monthly
funding is almost 31,8480 GEL. Services provided in this sub-program are non-specific
and not priority for successful abilitation of ASD children, since aside from meals three
times a day they need specific, mainly educational, skills and needs-based abilitation.
4. Screening of developmental disorders of 0-6 aged children, which is implemented within
the framework of early detection and screening sub-programs. Assessment of global
development of high-risk and premature children is conducted using special
questionnaires and screening tests, the budget of which is 221 GEL per child and
serves 60 children per month, with monthly budget of 13,260 GEL. This sub-program is
implemented by the Institute of Neurology and Neuropsychology, and Childrens Central
Hospital named after Iashvili (Ministry of Labor, Health and Social Protection of
Georgia, Response of Darakhvelidze, Head of Healthcare Department N01/3616;
January 17,2014).
At the moment this program works effectively enough, although for its full use it would
be appropriate to use all instruments of international assessment standards, majority of
which are not yet translated and adapted.
Interviews with different representatives of the Ministry of Labor, Health and Social Protection
has shown that in accordance with the law on general education and national educational plan
any child with specific educational needs, including those with ASD are ensured with individual
educational plan and consulting/assistance of special teacher or school psychologist. This
service does not include appropriately intensive training/classes for ASD individuals, although
it is a good fact that the Ministry of Education works in this direction and with its effort in 2013,
for the first time in Georgia, in public school 166 a pilot integrated class for ASD children of 1-6
grades was created. 5 specialists work with 11 students in the class, although this not
sufficient. It is also difficult to talk about success/failure, since the class started to function in
October 2013 only.
Interview with the head of Coordination and Monitoring Group of Pre-school Development
Division of the Ministry of Education gave a good picture of educational aspects in pre-school
institutions (kindergartens). More specifically, kindergartens, since 2006 have fully been
transferred to the management of the local governances and municipalities. At the moment
educational and general needs of the kindergartens are decided by specific municipalities and
mayors offices of towns. Ministry of Education of Georgia is authorized to only give
recommendations regarding educational issues, and municipalities are authorized to consider
them as they deem necessary. There is no unified standard of pre-school education in Georgia
at the moment, so inclusion of ASD children in pre-school education is only ensured in
separate regions within the framework of inclusive education program.
Meeting with representatives of Social Agency and Social Department of the Ministry of Labor,
Health and Social Affairs has shown that in Tbilisi and Batumi same state sub-programs are in
action to cover ASD services. The main difference in case of Batumi is that Social Department
8
of the Ministry of Labor, Health and Social Affairs has been able to involve ASD children into
Children rehabilitation and abilitation sub-program. More specifically, based on the needs they
are provided with services of rehabilitation specialist, occupational therapist, speech therapist
and psychologist. No such services are offered to ASD individuals in Tbilisi.
Main findings
Since there is no status assignment based on ASD diagnostics and it is identified with other
early development disorders, the state does not consider specifics of its abilitation process. As
a result, there is no state policy and state services that are focused on managing this specific
problem, as there is in case of cerebral palsy, epilepsy, spinal muscle atrophy, etc.
Without adequate funding from the side of the government non-government services cannot
be developed either. According to the only pilot survey conducted for the moment, conducted
by Association of Neurologists and Neurosurgeons in 2008-2009 covering about 1700
individuals, it turned out that in Georgia, similar to other countries, ratio of ASD individuals is 1
per 110 individuals. If this data is generalized to all population, it turns out that individuals with
ASD represent 1% of the total population. According to international research this is an
increasing percentage, which is alarming. According to National Center of Disease Control and
Prevention of USA data, in 2012 one in every 88 children had ASD, while in 2014 in the same
region one in every 68 children has ASD (http://www.cdc.gov/ncbddd/autism/data.html).
As already noted above, government structures implement 4 main sub-programs:
1. Early Development sub-program, which covers maximum of 150 children in Tbilisi
2. Day Center Program with no set number of beneficiaries due to its specifics
3. Age 0-6 children developmental disorder screening: serving 60 children per month
4. Childrens rehabilitation/abilitation program in Batumi, partially providing ASD abilitation
5. Also, independently, Tbilisi mayors office finances recreation/health program.
I think, based on the results of the survey, it is possible for the Ministry of Labor, Health and
Social Protection to prepare a project for the special sub-program, where cost of certain
services already considered in other programs can be re-distributed to cover the needs of ASD
individuals. This will not increase overall cost of the sub-program and at the same time will
enable for existing services to be better allocated and adapted to the needs of ASD persons.
Willingness to such collaboration, we think, is already in place from the side of Mariam
Janashia, Deputy Minister of Labor, Health and Social Protection as well as personnel of
Social Issues Department Nino Jinjolava and Salome Chichinadze, which could become a
topic for our future collaboration.
Supporting development of state services and increasing quality of their involvement is of
utmost importance since such individuals, as a rule, require very intensive individual classes.
Parents often cannot fund even minimum required service due to economic and family issues.
It should be mentioned that there are frequent cases of single mothers, who, due to specific
needs of their children are unemployed, or there is only one working parent in the family, who
has insufficient income to fund needed services.
At the moment there are three centers in Tbilisi that have sufficiently qualified human
resources to provide ASD children with adequate treatment, but with insufficient intensiveness,
which, in case of our center (Autism Center of St. George) results from small area that does
not allow to conduct classes for more than 7 children at the same time, and age segregation
cannot be achieved. In other cases, lack of intensive services is a result of insufficient human
resources or inability of the parent to pay for classes, which, once again, strongly raises the
issue of state involvement, at least for co-funding such services.
Within the framework of our survey we have calculated that at the moment there are 120-150
ASD individuals covered by the state program.
It can be said that the following has been identified and confirmed:
1. Based on ASD diagnosis, people with ASD are not granted status of disability
2. There is no distinct state policy towards ASD, which results into minimal involvement of
the state in resolving this problem
3. In 2006 Georgia signed 23
rd
UN Convention, which was ratified by the Government of
Georgia in December 2013. The same year, the need for inclusive education started.
Even today, in spite of the amendments to the law on general education, there is no
refined methodology for teaching ASD individuals. In reality, inclusive education means
right of people with ASD, as students with special needs to be involved in public
educational institutions, kindergartens, schools, universities. Children with special
needs, in best-case scenario are ensured with individual educational plan and
assistance of special teacher. Lack of teachers in this regard is also an issue. In this
direction, the Ministry of Education, with our involvement and effort has created the first
precedent of integrated elementary-level classroom for children with ASD in school
#166. However, in spite of the fact that the Ministry of Education provided a
psychologist, two special teachers and 2 assistants to this classroom, due to large
number of students in an integrate classroom we believe educational needs of ASD
children was not sufficiently met.
4. There are no sufficient instruments for assessment that would enable correct
distribution of students into ordinary and integrated classrooms. Therefore, educational
process of these students and quality assurance is difficult.
Unfortunately, translation and adaptation of screening-diagnostic and evaluation
instruments has become an issue, and ministries cannot ensure funding. Creation of
correct state policy and guidelines is about appropriate instrumental survey, screening
and evaluation (see Annex 3), as a result of which educational program should be
provided by correct curriculum and services focused on best outcome should be
implemented.
Ilia State University
9
of the Ministry of Labor, Health and Social Affairs has been able to involve ASD children into
Children rehabilitation and abilitation sub-program. More specifically, based on the needs they
are provided with services of rehabilitation specialist, occupational therapist, speech therapist
and psychologist. No such services are offered to ASD individuals in Tbilisi.
Main findings
Since there is no status assignment based on ASD diagnostics and it is identified with other
early development disorders, the state does not consider specifics of its abilitation process. As
a result, there is no state policy and state services that are focused on managing this specific
problem, as there is in case of cerebral palsy, epilepsy, spinal muscle atrophy, etc.
Without adequate funding from the side of the government non-government services cannot
be developed either. According to the only pilot survey conducted for the moment, conducted
by Association of Neurologists and Neurosurgeons in 2008-2009 covering about 1700
individuals, it turned out that in Georgia, similar to other countries, ratio of ASD individuals is 1
per 110 individuals. If this data is generalized to all population, it turns out that individuals with
ASD represent 1% of the total population. According to international research this is an
increasing percentage, which is alarming. According to National Center of Disease Control and
Prevention of USA data, in 2012 one in every 88 children had ASD, while in 2014 in the same
region one in every 68 children has ASD (http://www.cdc.gov/ncbddd/autism/data.html).
As already noted above, government structures implement 4 main sub-programs:
1. Early Development sub-program, which covers maximum of 150 children in Tbilisi
2. Day Center Program with no set number of beneficiaries due to its specifics
3. Age 0-6 children developmental disorder screening: serving 60 children per month
4. Childrens rehabilitation/abilitation program in Batumi, partially providing ASD abilitation
5. Also, independently, Tbilisi mayors office finances recreation/health program.
I think, based on the results of the survey, it is possible for the Ministry of Labor, Health and
Social Protection to prepare a project for the special sub-program, where cost of certain
services already considered in other programs can be re-distributed to cover the needs of ASD
individuals. This will not increase overall cost of the sub-program and at the same time will
enable for existing services to be better allocated and adapted to the needs of ASD persons.
Willingness to such collaboration, we think, is already in place from the side of Mariam
Janashia, Deputy Minister of Labor, Health and Social Protection as well as personnel of
Social Issues Department Nino Jinjolava and Salome Chichinadze, which could become a
topic for our future collaboration.
Supporting development of state services and increasing quality of their involvement is of
utmost importance since such individuals, as a rule, require very intensive individual classes.
Parents often cannot fund even minimum required service due to economic and family issues.
It should be mentioned that there are frequent cases of single mothers, who, due to specific
needs of their children are unemployed, or there is only one working parent in the family, who
has insufficient income to fund needed services.
At the moment there are three centers in Tbilisi that have sufficiently qualified human
resources to provide ASD children with adequate treatment, but with insufficient intensiveness,
which, in case of our center (Autism Center of St. George) results from small area that does
not allow to conduct classes for more than 7 children at the same time, and age segregation
cannot be achieved. In other cases, lack of intensive services is a result of insufficient human
resources or inability of the parent to pay for classes, which, once again, strongly raises the
issue of state involvement, at least for co-funding such services.
Within the framework of our survey we have calculated that at the moment there are 120-150
ASD individuals covered by the state program.
It can be said that the following has been identified and confirmed:
1. Based on ASD diagnosis, people with ASD are not granted status of disability
2. There is no distinct state policy towards ASD, which results into minimal involvement of
the state in resolving this problem
3. In 2006 Georgia signed 23
rd
UN Convention, which was ratified by the Government of
Georgia in December 2013. The same year, the need for inclusive education started.
Even today, in spite of the amendments to the law on general education, there is no
refined methodology for teaching ASD individuals. In reality, inclusive education means
right of people with ASD, as students with special needs to be involved in public
educational institutions, kindergartens, schools, universities. Children with special
needs, in best-case scenario are ensured with individual educational plan and
assistance of special teacher. Lack of teachers in this regard is also an issue. In this
direction, the Ministry of Education, with our involvement and effort has created the first
precedent of integrated elementary-level classroom for children with ASD in school
#166. However, in spite of the fact that the Ministry of Education provided a
psychologist, two special teachers and 2 assistants to this classroom, due to large
number of students in an integrate classroom we believe educational needs of ASD
children was not sufficiently met.
4. There are no sufficient instruments for assessment that would enable correct
distribution of students into ordinary and integrated classrooms. Therefore, educational
process of these students and quality assurance is difficult.
Unfortunately, translation and adaptation of screening-diagnostic and evaluation
instruments has become an issue, and ministries cannot ensure funding. Creation of
correct state policy and guidelines is about appropriate instrumental survey, screening
and evaluation (see Annex 3), as a result of which educational program should be
provided by correct curriculum and services focused on best outcome should be
implemented.
10
5. We believe it is very important to ensure close and coordinated collaboration between
the Ministry of Labor, Heath and Social Affairs and Ministry of Education and Science
along with communication with and involvement of NGO sector working on given
issues. It is the NGO sector, which often has many qualified specialists that have
accumulated expert knowledge on the subject. Therefore, coordination between NGO
and state sectors is a necessary precondition for creating a correct, needs-tailored and
optimal governmental policy for ASD individuals.
We believe this survey should serve as the basis of creation of the new, improved
guidelines and policy. Advantages and shortcomings of the existing services should be
evaluated correctly and thoroughly.
6. According to international data, one every six children with disabilities has ASD, adding
up to 17%. This means that 17% of all funds allocated for people with disabilities should
be allocated for people with ASD. According to our information, at the moment only up
to 150 children with ASD undergo some intervention in different day care or
rehabilitation centers. We added up 17% of the budget amount allocated as a pension
for people with disabilities and compared these figures to the amount needed for
minimal service provision for ASD individuals. It turns out that the state, within the
framework of the current budget the state can fund 73% of the minimal services for 150
children with disability status, but if we dont count the pension fund, then funding for
150 children of age 0-18 can be provided by 55%.
Conclusion and Recommendations
Based on the results of the survey it is necessary to:
- First of all develop a separate sub-program by the Ministry of Labor, Health and Social
Protection for people with ASD. Using the budget available for the moment this would
ensure co-funding of provision of specific, needs-based minimal services for such
individuals.
- Ministry of Education and Science has a possibility to equip school-educational
environment with appropriate educational materials, visual books and other aids.
- Training and retraining of qualified specialists, which should be supported by the
Ministry of Education and Science as well as Ministry of Labor, Health and Social Affairs
and their local and international specialists working on ASD issues, material stimulation
of NGOs, universities, and creation of appropriate legislation.
- Interdisciplinary approach towards needs of people with ASD, which is achieved
through coordination of appropriate government structures and increased
communication both between the ministries as well as between government and non-
government sectors, for which we think such working groups could be created.
- Creation of ASD management regulation initiative in Georgia with involvement of
qualified experts and its approval by the Parliament.
- Sharing international experience of ASD management and active participation in the
process of translation and adaptation of guidelines together with experts of Ministry of
Education and Science and Ministry of Labor, Health and Social Affairs as well as
experts of NGOs working on ASD.
Diagram1. Dynamic increase of number of ASD individuals according to years
Source: http://www.cdc.gov/ncbddd/autism/data.html, 30.04.14
Ilia State University
11
5. We believe it is very important to ensure close and coordinated collaboration between
the Ministry of Labor, Heath and Social Affairs and Ministry of Education and Science
along with communication with and involvement of NGO sector working on given
issues. It is the NGO sector, which often has many qualified specialists that have
accumulated expert knowledge on the subject. Therefore, coordination between NGO
and state sectors is a necessary precondition for creating a correct, needs-tailored and
optimal governmental policy for ASD individuals.
We believe this survey should serve as the basis of creation of the new, improved
guidelines and policy. Advantages and shortcomings of the existing services should be
evaluated correctly and thoroughly.
6. According to international data, one every six children with disabilities has ASD, adding
up to 17%. This means that 17% of all funds allocated for people with disabilities should
be allocated for people with ASD. According to our information, at the moment only up
to 150 children with ASD undergo some intervention in different day care or
rehabilitation centers. We added up 17% of the budget amount allocated as a pension
for people with disabilities and compared these figures to the amount needed for
minimal service provision for ASD individuals. It turns out that the state, within the
framework of the current budget the state can fund 73% of the minimal services for 150
children with disability status, but if we dont count the pension fund, then funding for
150 children of age 0-18 can be provided by 55%.
Conclusion and Recommendations
Based on the results of the survey it is necessary to:
- First of all develop a separate sub-program by the Ministry of Labor, Health and Social
Protection for people with ASD. Using the budget available for the moment this would
ensure co-funding of provision of specific, needs-based minimal services for such
individuals.
- Ministry of Education and Science has a possibility to equip school-educational
environment with appropriate educational materials, visual books and other aids.
- Training and retraining of qualified specialists, which should be supported by the
Ministry of Education and Science as well as Ministry of Labor, Health and Social Affairs
and their local and international specialists working on ASD issues, material stimulation
of NGOs, universities, and creation of appropriate legislation.
- Interdisciplinary approach towards needs of people with ASD, which is achieved
through coordination of appropriate government structures and increased
communication both between the ministries as well as between government and non-
government sectors, for which we think such working groups could be created.
- Creation of ASD management regulation initiative in Georgia with involvement of
qualified experts and its approval by the Parliament.
- Sharing international experience of ASD management and active participation in the
process of translation and adaptation of guidelines together with experts of Ministry of
Education and Science and Ministry of Labor, Health and Social Affairs as well as
experts of NGOs working on ASD.
Diagram1. Dynamic increase of number of ASD individuals according to years
Source: http://www.cdc.gov/ncbddd/autism/data.html, 30.04.14
12
Sources used and additional sources
1. Regulation of the Government of Georgia #74, March 28, 2013: on Approval of State
Program 2013 on Social Rehabilitation and Childcare
2. Resolution of the Government of Georgia #279, October 31, 2013: on Approval of State
Programs 2013 on Health Protection
3. Ordain of the Minister of Labor, Health and Social Affairs of Georgia #1/N, January 13,
2003, Tbilisi
4. Maurice, C., Green, G. & Luce, St. G. (1996) Behavioral Intervention for Young
Children with Autism; Pro Ed;
5. Best Practice Guidelines for the Assessment and Diagnosis of Autistic Spectrum
Disorders for Children and Adolescents,Autism Spectrum Disorders Special Interest
Group, Psychological Society of IrelandNUI Galway, 13
th
January 2012
6. http://www.autisminthemuseum.org/p/training.html, 21.04.2014
Annex 1: Key Questions of the Interview
Questions for the representatives of Ministry of Labor, Health and Social Affairs:
1. Which sub-projects are implemented by the given ministry that provide services to ASD
individuals?
2. What is covered by each of the sub-programs?
3. Are these programs differentiated for various nosologies?
4. What is the cost of each of the sub-programs or programs per person and how many
beneficiaries are provided with the service?
5. What were the criteria used by the Ministry while creating these sub-programs?
6. Is there a plan to create differentiated sub-programs while producing action plan for
physical health?
7. Does the Ministry plan to create new, vertical sub-programs and when?
8. How close is cooperation between ministries and NGOs working on ASD while creating
these sub-programs?
9. Which government or non-government organizations implement governmental sub-
programs and how?
Questions for NGO service providers:
1. What are the services provided by your organization to ASD individuals?
2. Which state program is implemented by the given organization?
3. How many beneficiaries use these services and what are the resources of the
organization, how diverse and intensive is it?
4. What is the cost of these programs, except for those funded by the state?
5. Which of the instruments are used for assessing ASD diagnostics?
Ilia State University
13
Sources used and additional sources
1. Regulation of the Government of Georgia #74, March 28, 2013: on Approval of State
Program 2013 on Social Rehabilitation and Childcare
2. Resolution of the Government of Georgia #279, October 31, 2013: on Approval of State
Programs 2013 on Health Protection
3. Ordain of the Minister of Labor, Health and Social Affairs of Georgia #1/N, January 13,
2003, Tbilisi
4. Maurice, C., Green, G. & Luce, St. G. (1996) Behavioral Intervention for Young
Children with Autism; Pro Ed;
5. Best Practice Guidelines for the Assessment and Diagnosis of Autistic Spectrum
Disorders for Children and Adolescents,Autism Spectrum Disorders Special Interest
Group, Psychological Society of IrelandNUI Galway, 13
th
January 2012
6. http://www.autisminthemuseum.org/p/training.html, 21.04.2014
Annex 1: Key Questions of the Interview
Questions for the representatives of Ministry of Labor, Health and Social Affairs:
1. Which sub-projects are implemented by the given ministry that provide services to ASD
individuals?
2. What is covered by each of the sub-programs?
3. Are these programs differentiated for various nosologies?
4. What is the cost of each of the sub-programs or programs per person and how many
beneficiaries are provided with the service?
5. What were the criteria used by the Ministry while creating these sub-programs?
6. Is there a plan to create differentiated sub-programs while producing action plan for
physical health?
7. Does the Ministry plan to create new, vertical sub-programs and when?
8. How close is cooperation between ministries and NGOs working on ASD while creating
these sub-programs?
9. Which government or non-government organizations implement governmental sub-
programs and how?
Questions for NGO service providers:
1. What are the services provided by your organization to ASD individuals?
2. Which state program is implemented by the given organization?
3. How many beneficiaries use these services and what are the resources of the
organization, how diverse and intensive is it?
4. What is the cost of these programs, except for those funded by the state?
5. Which of the instruments are used for assessing ASD diagnostics?
14
Annex 2: List of Respondents
1. Mariam Jashi, Deputy Minister of Labor, Health and Social Affairs;
2. Nino Jinjolava, Senior Specialist of Social Issues Department of the Ministry of Labor,
Health and Social Affairs;
3. Sophio Morgoshia, Senior Specialist of Public Healthcare and Programs Division of
Healthcare Department of the Ministry of Labor, Health and Social Affairs;
4. Tamar Sanikidze, Minister of Education and Science;
5. Eka Dgebuadze, Head of Inclusive Education Department of the Ministry of Education
and Science;
6. Inga Zarandia, Member of Multidisciplinary Group of Inclusive Education on Ajara,
Batumi Coordinator of Early Intervention Program of First Step Georgia;
7. Nino Alelishvili, Head of Coordination and Monitoring Group of Pre-School Education of
the Ministryo f Education and Science of Georgia;
8. Sophio Tatishvili, Early Intervention Program Coordinator, Neurology and
Neurodevelopment Center;
9. Maia Gabunia, Director, Neurology and Neurodevelopment Center;
10. Tamar Gagoshidze, Head of Neuropsychological Divisino of the Institute of Neurology
and Neuropsychology;
11. Ana Gazashvili, Coordinator of Early Intervention Program for Children of Georgia;
12. Tatia Shkubuliani, Psychologist of Georgian Portigy Association;
13. Teona Gavashelishvili, Psychologist of First Step Georgia;
14. Lela Surmanidze, Head of Social Protection Department of the Ministry of Labor, Health
and Social Affairs of Ajara;
15. Khatuna Paghava, Head of Genesis Association;
16. Nana Sakvarelidze, Founder of Medical Association Tana.
Annex 3: Evaluation Instruments (Psychological Society of Ireland NUI Galway, 13
th
January
2012)
1. Bayleys infant development scale III;
2. Stanford-Binet IQ scale, 5
th
edition;
3. Wexler IQ scale for pre-school and early school age III UK Edition (WPPSI-III UK);
4. Wexler IQ scale for children, 4
th
edition (WISC-IV UK);
5. Kaufmann Assessment Battery for Children; Non-verbal measurements;
6. Wexler non-verbal skills assessment scale;
7. Non-verbal intellect assessment test TONI- IV;
8. Raven progressive matrix;
9. Beck questionnaire (childrens version);
10. Eschenbach behavior assessment questionnaire for children;
11. ADOS 2nd Edition;
12. Academic and pre-academic ABLLS;
13. Giliam Autism Rating Scale GARS.
Ilia State University
15
Annex 2: List of Respondents
1. Mariam Jashi, Deputy Minister of Labor, Health and Social Affairs;
2. Nino Jinjolava, Senior Specialist of Social Issues Department of the Ministry of Labor,
Health and Social Affairs;
3. Sophio Morgoshia, Senior Specialist of Public Healthcare and Programs Division of
Healthcare Department of the Ministry of Labor, Health and Social Affairs;
4. Tamar Sanikidze, Minister of Education and Science;
5. Eka Dgebuadze, Head of Inclusive Education Department of the Ministry of Education
and Science;
6. Inga Zarandia, Member of Multidisciplinary Group of Inclusive Education on Ajara,
Batumi Coordinator of Early Intervention Program of First Step Georgia;
7. Nino Alelishvili, Head of Coordination and Monitoring Group of Pre-School Education of
the Ministryo f Education and Science of Georgia;
8. Sophio Tatishvili, Early Intervention Program Coordinator, Neurology and
Neurodevelopment Center;
9. Maia Gabunia, Director, Neurology and Neurodevelopment Center;
10. Tamar Gagoshidze, Head of Neuropsychological Divisino of the Institute of Neurology
and Neuropsychology;
11. Ana Gazashvili, Coordinator of Early Intervention Program for Children of Georgia;
12. Tatia Shkubuliani, Psychologist of Georgian Portigy Association;
13. Teona Gavashelishvili, Psychologist of First Step Georgia;
14. Lela Surmanidze, Head of Social Protection Department of the Ministry of Labor, Health
and Social Affairs of Ajara;
15. Khatuna Paghava, Head of Genesis Association;
16. Nana Sakvarelidze, Founder of Medical Association Tana.
Annex 3: Evaluation Instruments (Psychological Society of Ireland NUI Galway, 13
th
January
2012)
1. Bayleys infant development scale III;
2. Stanford-Binet IQ scale, 5
th
edition;
3. Wexler IQ scale for pre-school and early school age III UK Edition (WPPSI-III UK);
4. Wexler IQ scale for children, 4
th
edition (WISC-IV UK);
5. Kaufmann Assessment Battery for Children; Non-verbal measurements;
6. Wexler non-verbal skills assessment scale;
7. Non-verbal intellect assessment test TONI- IV;
8. Raven progressive matrix;
9. Beck questionnaire (childrens version);
10. Eschenbach behavior assessment questionnaire for children;
11. ADOS 2nd Edition;
12. Academic and pre-academic ABLLS;
13. Giliam Autism Rating Scale GARS.
16



Comments and Questions
Public Policy Research and Training Center
Nino Imedashvili, Coordinator
Phone: (+995 32) 223 10 57
E-mail: nino.imedashvili.1@iliauni.edu.ge
Ilia State University
3/5 Kakutsa Cholokashvili street, Tbilisi 0162, Georgia
Phone: (+995 32) 223 10 57
About the Author
Sophio Kereselidze, Married. Younger son, 8-year-old Nicholas has ASD. Practitioner doctor
in the past, with 20 years of experience of working in stationary. Since 2009 to present
President of Association of Autism of Georgia, since 2010 head of St. George Autism Center
of Ilia State University.