survey of healthcare and educational services for individuals with autistic spectrum disorder (asd)

8/12/2019 SURVEY OF HEALTHCARE AND EDUCATIONAL SERVICES FOR INDIVIDUALS WITH AUTISTIC SPECTRUM DISORDER (A

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Ilia State University

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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)


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Mission of the Public Policy Research and Training Center

Public Policy Research and Training Center (PPRTC) of t SailI ate University was founded inNovember 2013 and is focused on supporting development of public policy research inGeorgia through capacity building of research personnel and public servants, conductingevidence-based analytical studies and ensuring highly qualified targeted short-term trainingcourses.

This publication was made possible with the generous support of the Policy, Advocacy, and CivilSociety 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 forInternational Development (USAID). The views expressed in this publication are those of the authorsand do not necessarily reflect the views of G-PAC, EWMI, USAID, or the US Government.


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Survey of healthcare and educational services for individuals with autistic specterdisorder

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


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Issue/Problem Statement and Justification

Today, autism is one of the severe problems of the world. It turns out that the number of suchindividuals 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 ontheir diagnosis.

Various research conducted in USA has shown that early, adequate and intensive interventionto autism significantly improves the outcome within the first 2 years. 48% of children whostarted applied behavior analyses-based (ABA) behavioral therapy at the age of 18-30 monthspractically 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 aswell as NGO efforts and support, which raises the need for surveying resources, services andexperience in the country. No such research has been conducted before, which underlines itsimportance even more.

As it was mentioned above, it is important to develop services tailored specifically to the needsof 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 theircapacity-building

- Quality control of services provided.

Methodology of the research project

Given project was focused on surveying state and NGO services and resources offered toindividuals with Autistic Spectrum Disorder (ASD) disorder in Georgia. Therefore, theobjectives of the survey were to study existing public information along with services providedby 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


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Georgia together with analysis of the appropriate legislation. More specifically, the researchteam studied state programs and sub-programs, laws, normative acts and resolutions that aresomehow associated or can be associated to the needs of people with autism.

With the purpose of studying services provided to such individuals 16 interviews wereconducted in Tbilisi and Batumi (see Annex 1: Main Questions of the Interview). Participants ofthe interviews were representatives of both state and non-state actors (see Annex 2: List ofRespondents).

Results of the Survey

The survey has shown that the Ministry of Labor, Health and Social Protection is implementinga 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 ofsocial protection, which ensure various directions of abilitation and rehabilitation of people ofdisabilities, partially including people with autism. Assessment of both directions has identified4 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: childrensdevelopment disorder, early identification and screening, including 0-6 age childrendevelopment disorder and screening, which costs 123 GEL, and prevention of mild andaverage 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 bythis sub-program. This program is studies/diagnoses psychical health of children andadolescents of 0-18 age in day stationary. During the interview Chief Specialist ofHealthcare Department has noted that the cost of this 5-day program per person is 466GEL, number of individuals is not defined, and therefore, no monthly cost could beidentified. Head of Childrens Neurology and Neurodevelopment center has noted thatthis is childrens psychical health sub-program that covers 27 children per month.

Almost half of children within this sub-program have ASD. Others have variousdiagnostics and balance is maintained as much as possible. In total, since 2009 theyhave treated 300-350 children, but there is no exact statistics available. If a child isconsidered as a risk group, he/she is enrolled in this program.

2. Early development sub-program, which is about servicing children with earlydevelopment disorders of age 0-7 for 8 hours per month. Payment takes place usingvouchers, so called materialized vouchers. Total annual cost of the programs is223,000 GEL and maximum number of beneficiaries for 2013 is 150 children. The costof voucher is 144 GEL, which is 21,600 GEL for 150 children per month. This programworks well enough, although it cannot ensure appropriate minimal intensiveness forindividual therapy, which is necessary for ASD individuals (at least 25 hours per week).


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3. Day Center sub-program, which is meant for children and adolescents between 6-18 ofage. Daily funding is now 11 GEL, annual budget is 3,184,800 GEL, while monthlyfunding 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 threetimes 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 withinthe framework of early detection and screening sub-programs. Assessment of globaldevelopment of high-risk and premature children is conducted using specialquestionnaires and screening tests, the budget of which is 221 GEL per child andserves 60 children per month, with monthly budget of 13,260 GEL. This sub-program isimplemented by the Institute of Neurology and Neuropsychology, and Childrens CentralHospital 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 wouldbe appropriate to use all instruments of international assessment standards, majority ofwhich are not yet translated and adapted.

Interviews with different representatives of the Ministry of Labor, Health and Social Protectionhas shown that in accordance with the law on general education and national educational planany child with specific educational needs, including those with ASD are ensured with individualeducational plan and consulting/assistance of special teacher or school psychologist. This

service does not include appropriately intensive training/classes for ASD individuals, althoughit 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 1-6grades was created. 5 specialists work with 11 students in the class, although this notsufficient. It is also difficult to talk about success/failure, since the class started to function inOctober 2013 only.

Interview with the head of Coordination and Monitoring Group of Pre-school DevelopmentDivision of the Ministry of Education gave a good picture of educational aspects in pre-schoolinstitutions (kindergartens). More specifically, kindergartens, since 2006 have fully been

transferred to the management of the local governances and municipalities. At the momenteducational and general needs of the kindergartens are decided by specific municipalities andmayors offices of towns. Ministry of Education of Georgia is authorized to only giverecommendations regarding educational issues, and municipalities are authorized to considerthem as they deem necessary. There is no unified standard of pre-school education in Georgiaat the moment, so inclusion of ASD children in pre-school education is only ensured inseparate 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


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of the Ministry of Labor, Health and Social Affairs has been able to involve ASD children intoChildren rehabilitation and abilitation sub-program. More specifically, based on the needs theyare 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 otherearly development disorders, the state does not consider specifics of its abilitation process. Asa result, there is no state policy and state services that are focused on managing this specificproblem, 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, conductedby Association of Neurologists and Neurosurgeons in 2008-2009 covering about 1700individuals, it turned out that in Georgia, similar to other countries, ratio of ASD individuals is 1per 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 anincreasing percentage, which is alarming. According to National Center of Disease Control andPrevention of USA data, in 2012 one in every 88 children had ASD, while in 2014 in the sameregion 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 andSocial 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 ASDindividuals. This will not increase overall cost of the sub-program and at the same time willenable 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 MariamJanashia, Deputy Minister of Labor, Health and Social Protection as well as personnel ofSocial Issues Department Nino Jinjolava and Salome Chichinadze, which could become atopic for our future collaboration.

Supporting development of state services and increasing quality of their involvement is ofutmost 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.


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It should be mentioned that there are frequent cases of single mothers, who, due to specificneeds of their children are unemployed, or there is only one working parent in the family, whohas insufficient income to fund needed services.

At the moment there are three centers in Tbilisi that have sufficiently qualified humanresources 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 doesnot allow to conduct classes for more than 7 children at the same time, and age segregationcannot be achieved. In other cases, lack of intensive services is a result of insufficient humanresources or inability of the parent to pay for classes, which, once again, strongly raises theissue 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 ofthe state in resolving this problem

3. In 2006 Georgia signed 23 rd UN Convention, which was ratified by the Government ofGeorgia 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 norefined methodology for teaching ASD individuals. In reality, inclusive education meansright of people with ASD, as students with special needs to be involved in publiceducational institutions, kindergartens, schools, universities. Children with specialneeds, in best-case scenario are ensured with individual educational plan andassistance of special teacher. Lack of teachers in this regard is also an issue. In thisdirection, the Ministry of Education, with our involvement and effort has created the firstprecedent of integrated elementary-level classroom for children with ASD in school#166. However, in spite of the fact that the Ministry of Education provided apsychologist, two special teachers and 2 assistants to this classroom, due to largenumber 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, educationalprocess of these students and quality assurance is difficult.

Unfortunately, translation and adaptation of screening-diagnostic and evaluationinstruments has become an issue, and ministries cannot ensure funding. Creation ofcorrect state policy and guidelines is about appropriate instrumental survey, screeningand evaluation (see Annex 3), as a result of which educational program should beprovided by correct curriculum and services focused on best outcome should beimplemented.


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5. We believe it is very important to ensure close and coordinated collaboration betweenthe Ministry of Labor, Heath and Social Affairs and Ministry of Education and Sciencealong with communication with and involvement of NGO sector working on given

issues. It is the NGO sector, which often has many qualified specialists that haveaccumulated expert knowledge on the subject. Therefore, coordination between NGOand state sectors is a necessary precondition for creating a correct, needs-tailored andoptimal governmental policy for ASD individuals.We believe this survey should serve as the basis of creation of the new, improvedguidelines and policy. Advantages and shortcomings of the existing services should beevaluated correctly and thoroughly.

6. According to international data, one every six children with disabilities has ASD, addingup 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 upto 150 children with ASD undergo some intervention in different day care orrehabilitation centers. We added up 17% of the budget amount allocated as a pensionfor people with disabilities and compared these figures to the amount needed forminimal service provision for ASD individuals. It turns out that the state, within theframework of the current budget the state can fund 73% of the minimal services for 150children with disability status, but if we dont count the pension fund, then funding for150 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 SocialProtection for people with ASD. Using the budget available for the moment this wouldensure co-funding of provision of specific, needs-based minimal services for suchindividuals.

- Ministry of Education and Science has a possibility to equip school-educationalenvironment with appropriate educational materials, visual books and other aids.

- Training and retraining of qualified specialists, which should be supported by theMinistry of Education and Science as well as Ministry of Labor, Health and Social Affairsand their local and international specialists working on ASD issues, material stimulationof NGOs, universities, and creation of appropriate legislation.

- Interdisciplinary approach towards needs of people with ASD, which is achievedthrough coordination of appropriate government structures and increasedcommunication 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 ofqualified experts and its approval by the Parliament.


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- Sharing international experience of ASD management and active participation in theprocess of translation and adaptation of guidelines together with experts of Ministry ofEducation 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


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Sources used and additional sources

1. Regulation of the Government of Georgia #74, March 28, 2013: on Approval of StateProgram 2013 on Social Rehabilitation and Childcare

2. Resolution of the Government of Georgia #279, October 31, 2013: on Approval of StatePrograms 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 YoungChildren with Autism; Pro Ed;

5. Best Practice Guidelines for the Assessment and Diagnosis of Autistic SpectrumDisorders for Children and Adolescents,Autism Spectrum Disorders Special InterestGroup, Psychological Society of IrelandNUI Galway, 13 th January 2012

6. http://www.autisminthemuseum.org/p/training.html, 21.04.2014


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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 ASDindividuals?

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 manybeneficiaries 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 creatingthese 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 theorganization, 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?


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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 ofHealthcare 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 Educationand 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 ofthe Ministryo f Education and Science of Georgia;

8. Sophio Tatishvili, Early Intervention Program Coordinator, Neurology andNeurodevelopment Center;

9. Maia Gabunia, Director, Neurology and Neurodevelopment Center;

10.Tamar Gagoshidze, Head of Neuropsychological Divisino of the Institute of Neurologyand 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, Healthand Social Affairs of Ajara;

15.Khatuna Paghava, Head of Genesis Association;

16.Nana Sakvarelidze, Founder of Medical Association Tana.


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Annex 3: Evaluation Instruments ( Psychological Society of Ireland NUI Galway, 13 th January2012)

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.


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Comments and QuestionsPublic Policy Research and Training Center

Nino Imedashvili, Coordinator

Phone: (+995 32) 223 10 57

E-mail: [email protected]


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 doctorin the past, with 20 years of experience of working in stationary. Since 2009 to presentPresident of Association of Autism of Georgia, since 2010 head of St. George Autism Centerof Ilia State University.

survey of healthcare and educational services for individuals with autistic spectrum disorder (asd)

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