DEVELOPMENT CENTER
SOCIAL WORKS SKILLS & KNOWLEDGE
Hanoi, 2021
The Justice Initiative Promotion Fund (EU JULE JIFF) is one of two components of the project “Strengthening Law and Justice in Vietnam” (EU JULE) funded by the European Union (EU). The project targets disadvantaged groups to help them better access the justice system, to exercise their legal rights as prescribed by law.
REPORT WRITTEN GROUP
1. Dr. Mai Linh - Lecturer of the Department of Sociology
, University of Social Sciences and Humanities, Vietnam National University, Hanoi.
2. Dr. Nguyen Thi Tuyet Nga – Lecturer at Faculty of Gender and Development, Vietnam Women's Academy
Editor:
1. Assoc.Prof.Dr. Nguyen Thi Kim Hoa - Director of Center for Applied Research and Development of Social Work (CARDSW).
This report has been compiled with the financial support of the European Union. The contents of this document are those of the editorial team and do not necessarily reflect the views of the European Union, Oxfam Vietnam
and the Jiff Foundation.
THANK YOU
This report is an activity under the initiative "
Evaluating the impact of policies and laws on people with disabilities in Vietnam: A case study of children/autistic people " from a survey of the situation in Nghia Dan district, Yen Thanh district, Vinh City, Nghe An province, within the framework of the Justice Initiative Promotion Fund (EU JULE JIFF), is one of two components of the project "Strengthening the Law and Justice in Vietnam". ” (EU JULE) funded by the European Union (EU). The project aims to contribute to strengthening the rule of law in Vietnam through a more accessible and reliable Justice system.
We would like to thank the European Union (EU) for funding the JIFF Foundation and this research. With the invaluable contributions of the JIFF Secretariat , we would like to express our sincere thanks to the Board of Directors. The secretary of the JIFF Foundation, especially Ms. Nguyen Thi Hong Van - JIFF Program Officer, has commented and supported team during the reporting process. Despite the best efforts of the compilation team, this Report is certainly not without its limitations and shortcomings. We look forward to hearing from our readers. Thank you very much
Compilation team
The opinions, analysis and recommendations contained herein are those of the research team and do not necessarily reflect the official views of the European Union and Oxfam in Vietnam.
TABLE OF CONTENTS
PART 1. INTRODUCTION . 6
1. Question 6
2. Research overview 7
2.1. Situation of children with autism 7
2.2. Overview of early detection of children with autism spectrum disorder 8
2.3. Overview of early intervention for children with autism spectrum disorder 10
2.4. Overview of inclusive education for children with autism spectrum disorder 13
3. Research objectives 15
4. Subjects, subjects, scope of the survey/research 16
4.1. Research subjects
4.2. Research object 16
4.3. Limit study 16
5. Research Methods 16
6. Limitations of the study 18
PART 2: MAIN CONTENT . 20
CHAPTER 1. THEORETICAL AND PRACTICAL BASIS . 20
1.1.1 . The concept of children with autism in countries around the world and Vietnam 20
1.2. Policies on children with autism in some countries around the world 26
1.3. Policy on children with autism in Vietnam 31
1.4. Disabled people and autistic children in Nghe An 39
CHAPTER 2. Real life situation and legal policy barriers in accessing education and health care for children with autism 43
2.1. Reality of life of autistic children and their families 43
2.2 Policy and legal barriers in accessing education and health care of autistic children from the perspective of parents of autistic children and some stakeholders. 51
CONCLUSION, RECOMMENDATION .. 66
* Conclusion 66
* Recommended 66
LIST OF REFERENCES . 77
APPENDIX . 78
LIST OF ACRONYMS
Health Insurance
Community service
People with disabilities |
Health insurance
Social Work
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| Labor, Invalids and Social Affairs |
Labor, Invalids and Social Affairs |
| People's Committee |
People's Committee |
Discussion groups
In-depth interview |
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LIST OF PICTURES, TABLES
LIST OF PICTURES
Figure 1. Research analysis framework ............................................................................ …………19
LIST OF TABLES
Table 1. Report on the status of regular allowances for people with disabilities in the community (2020)................................................................. ................................. ...... . 4 6
Table 2: Number of children with autism in communes, Nghia Dan district ………….47
Table 3: Number of children with autism in communes and districts of Yen Thanh…………….49
Table 4 . Some manifestations of autistic children in the study area ............ 52
Autism was first described in 1943 by Leo Kanner, so far autism has become a widely known concept in society. Although many countries do not have accurate data on the prevalence of autism, most agree that autism is increasingly being detected in children. Because of the prevalence of autism and the high cost for families with children with autism, over the past decades, countries around the world have focused on developing and developing laws and policies. , programs and associations for families and children with autism
[1].
In recent years, the rapidly increasing rate of children with autism spectrum disorder is posing great problems for many countries. In Vietnam, a study on the Children's Disability Model of the Rehabilitation Department of the National Children's Hospital in the period 2000 - 2007 showed that the number of children diagnosed and treated for autism is increasing: the number of medical examination in 2007 increased 50 times compared to 2000; the trend of autism increased rapidly from 122% to 268% in the period 2004-2007 compared to 2000. However, currently, there is no separate legal document for autistic children, currently the only sub-law document is the Circular. No. 01/2019/TT-BLĐTBXH dated January 1, 2019 of the Ministry of Labour, Invalids and Social Affairs recognized autistic children as another type of disability , however, the strict regulations have caused many difficulties for families. children in the process of detecting, intervening, caring for and nurturing children ; With such an inadequate legal basis, it leads to limitations in policy access, greatly affecting the fairness of access to education, health care and social protection of autistic children.
According to statistics in 2020, in Nghe An province, there are more than 21,000 children in extremely difficult circumstances (accounting for 2.34% of the total number of children), including more than 12,000 children with eye disabilities. , heart, mouth and limbs struggling with mental and physical difficulties; more than 115,000 children are at risk of falling into special circumstances, accounting for nearly 13% of the total number of children. The number of children with autism in Nghe An has not been counted. In fact, other localities also have difficulty in making statistics on the number of children with autism and autistic forms. This study aims to review the State's legal policies on the rights of children with autism in accessing and enjoying health and education services. Assess the real life situation of children with autism and their families, difficulties in child care and upbringing, and assess the status/level of children with autism accessing and enjoying health and educational services On that basis, x identify barriers affecting access to health and educational services of autistic children in the family and community and make appropriate policy recommendations to meet the needs of children with autism. demand for access to health and educational services of each group of children with autism.
According to the Centers for Disease Control and Prevention (CDC), in 2014, about 1% of the world's population has autism spectrum disorder. Autism spectrum disorder refers to a wide range of disturbances in social skills, verbal and nonverbal communication, and repetitive behaviour. In many countries around the world, “Autism” has become widespread and has become a social problem. In western countries such as the UK, USA, Australia... autism spectrum disorder has been socialized and almost every citizen has a certain understanding of this disorder.
In recent years, the rate of children with autism spectrum disorder has changed rapidly. According to estimates of the CDC's Autism and Disability Tracking Network in the US, this rate in 2000 was 1 in 150 children, in 2010 it was 1 in 68, an increase of 119.4% and more common. in boys at a rate 4.5 times higher than in girls (1/41 and 1/189) (CDC, 2014). Autism is the fastest growing group of disorders (CDC, 2008). The rapidly increasing rate is posing big problems for many countries. Meanwhile in Vietnam, there are no officially published data on children with autism spectrum disorder. But from 2000 to now, the number of children diagnosed and treated with autism has increased. The study on Children's Disability Model of the Department of Rehabilitation at the National Children's Hospital in the period 2000 - 2007 showed that the number of children diagnosed and treated with autism was increasing: the number of visits to the clinic in 2007 doubled. 50 times more than in 2000; the trend of autism increased rapidly from 122% to 268% in the period 2004 - 2007 compared to 2000. In the research of the author Nguyen Thi Hoang Yen, based on the synthesis of qualitative and quantitative studies, the author made a forecast that the number of children with autism spectrum disorder in Vietnam will continue to increase rapidly in the coming years due to public awareness and expanded criteria for autism diagnosis. The results of a recent study by Tran Van Cong and Nguyen Thi Hoang Yen (2017) show that the estimated number for the percentage of children with autism spectrum disorder in Vietnam ranges from 0.5% to 1%.
Since the late nineteenth century, in the world, "autism" has been studied by scientists, but it was not until 1943 that the American psychiatrist, Leo Kanner, made a clear argument. about autism - is a psychiatric disorder at a young age. The concept of autism has changed since the beginning. We can clearly see the changes in terms, concepts, and criteria for autism diagnosis in the development history of two international classification systems. That is, the International Statistical Classification of Diseases and Related Health Problems (ICD) of the World Health Organization (WHO). and the Diagnostic and Statistical Manual of Mental Disorders (DSM) of the American Psychiatric Association.
The ICD did not mention autism in the first editions. In the 8th edition (1967), the ICD mentioned autism only as a form of "Schizophrenia" and in the 9th edition (1977) autism was mentioned under the name "Childhood Psychosis". .
From the 70s and 80s of the twentieth century, the term Autism Spectrum Disorders (ASDs) began to be considered. According to this modern view, autism, as Kanner calls it, falls under the broader category of autism spectrum disorders (ASDs). Autism spectrum disorders include: Autistic Disorder, Asperger's Syndrome, Childhood Disintegrative Disorder (CDD), Rett Syndrome... often considered synonymous with Pervasive Development Disorders (PDDs) [8]. However, the 5th edition of the American Psychiatric Association's Diagnostic Statistical Manual of Mental Disorders (DSM-5) officially used the name "Autism Spectrum Disorder" instead of "Autism Spectrum Disorder". widespread development disorder”.
Since hundreds of books in different genres have been published, autism spectrum disorder has attracted the attention of many researchers. Many scientists have spent many years researching and becoming the author of many research works and books. Typically authors such as Leo Kanner, Eric Schopler, Ivan Lovass, Carol Gray, Lorna Wing, Bryna Seigel, ... especially Temple Gradin - a woman with autism disorder, she is the author of Famous books like Emergence: Labelled Autistic, Thinking in Picture, The way I see it, etc. Researchers have helped the public to understand more and more about the mysteries of this disorder.
For Vietnam, it is only in the early years of the 21st century that autism spectrum disorder is really known and researches on autism spectrum disorder have only been conducted in the past ten years. Most of the studies were conducted in preschool children, a few in primary school children. The use of programs and intervention methods has also been mentioned in a number of studies, such as: psychomotor interventions and speech therapy, teaching children to understand emotions, how to manage behavior children's behavior and application of methods: Applied Behavior Analysis (ABA); Therapy and education for children with ASD with communication difficulties (TEACCH); Based on development, individual differences and relationships (DIR); Picture Exchange Communication System (PECS); Montessori, social story.... in intervention for children with autism spectrum disorder.
According to the Ministry of Health of Vietnam (
Guidelines for early detection and early intervention of children with disabilities, 2014 ) early detection is screening children for developmental disorders by age and stage developed in order to detect children at risk of disabilities to send them to the examination for classification of disabilities so that early intervention measures can be taken. Early detection of autism spectrum disorder means that children with autism spectrum disorder are detected before 3 years of age.
Some important roles of screening for early detection of autism are: 1) As a basis for sending children to specialists and for early diagnosis of autism spectrum disorders. 2) Counseling the family on early intervention methods. 3) Facilitating early education planning for children with autism spectrum disorders. 4) Provide families with early education and support services for children with autism spectrum disorder. 5) Provide appropriate intervention, therapy and care programs.
Currently, there are many research works in the world that are being conducted, applied to early detection of children with autism spectrum disorder. Some countries around the world, especially in the US, are ambitious to screen for autism spectrum disorder from birth.
In order to detect children with abnormal signs early and monitor their development, a team of experts from the University of Oregon in the US built and perfected the ASQ tool (Ages and Stages Questionnaires) over the past 40 years. This is a set of questions about the development of children from 2 months to 6 years old, ASQ is considered as the gold standard for screening children's development. ASQ tracks a child's development in five areas: communication, gross motor, fine motor, personal, social, and problem solving, thereby identifying strengths as well as areas where children need support support, early detection of developmental disorders and autism spectrum disorders.
In Vietnam, the work of early detection, diagnosis and assessment is usually done by pediatric psychiatrists; by clinical psychologists or special educators. Researching on the diagnosis and evaluation process of autism, author Thanh Ngoc Minh and his colleagues proposed a diagnostic process that ranges from "Concerns about children's development" Screening (using M - CHAT, Denver 2) Comprehensive Examination (Assessment by DSM - IV, CARS, PEP - III, Audiometry, Lead Measurement) Intervention Guidelines. The diagnosis is made by a team of doctors and psychologists in combination with observation and discussion. The diagnosis is sometimes not only made during the first visit of the child to the doctor, but also needs to be monitored for a certain period of time, in different environments. The authors also emphasize "
diagnosis Autism diagnosis should be cautious because if it is not diagnosed correctly, it will cause worries for the family, but if it is missed, the family is easily subjective and will not intervene, which will lose the child's opportunities in the future . In the 5 years of conducting the survey, the authors also give the percentage of boys 5-6 times more common than girls, the number of children with ASDs examined at 2 years of age and under 2 years old accounts for 37% [5]. This result shows that the awareness of parents and the community about autism spectrum disorder has increased markedly.
One published research results in the scientific article
"Development checklist for Vietnamese children " by author Nguyen Thi Hoang Yen (2013) and colleagues. The article describes the development checklist for Vietnamese children from 0-6 years old, its birth history, design, structure and some initial applications. The purpose of the checklist is to detect abnormalities in the development of children aged 0-6 years, and serve as a basis for teachers and parents to develop supportive education programs appropriate to the abnormalities detected. show
3 .
Although However, this study was only conducted on children with intellectual disabilities. Research is needed research on children with autism spectrum disorder.
Some published research results on assessment of development in CTS for children with autism by the authors: Dao Thi Bich Thuy (2013), Tran Thi Minh Thanh (2013) also have related content. Contents include: 1) development assessment and development of an individual education plan for children with autism; 2) detect and propose some solutions to solve the problem of assessing children with autism in our country.
The authors Tran Van Cong et al. (2013) have conducted a number of studies on using the survey method on 115 professionals who are directly involved in the assessment and intervention for children with autism spectrum disorders at facilities for children with disabilities. found: the most common toolkits being used by establishments today are: SMALL STEPS, PEP – R, PEP 3, ABS-S2, CHAT/M-CHAT, DENVER 2, CARS, ADOS, ADI-R , BSID-II.
In summary, in Vietnam, early detection has not been given due attention. The tools currently used are taken from abroad but have not been Vietnameseized. Depending on the family and local conditions, the work of child care for children with ASD is different, and there is no consensus. This is a fact that needs to be changed to benefit children and their families with autism spectrum disorders in Vietnam.
Around the world, researches on early intervention for children with autism spectrum disorder go in two main directions: medical intervention and psycho-educational intervention. Medical interventions with the viewpoints of providing treatment measures, effects related to drugs, nutrition (for children to eat some foods containing substances harmful to the functioning of the nervous system) , bio-chemical technology (detoxification or modification of substances that affect the nervous system)... These measures come from the view that autism spectrum disorders stem from physical causes.
Early intervention with psychotherapy – education provides integrated services with the aim of maximizing the development potential of children, helping children lead as normal a life as possible and become an active member. of the community. Early intervention for children with autism spectrum disorder is based on a compensatory perspective (promoting strengths, overcoming limitations), combining therapy and education. Early intervention models for children with autism spectrum disorder are mainly built on the following methods: Applied Behavior Analysis (ABA); Therapy and education for children with autism spectrum disorder with communication difficulties (TEACCH); Based on development, individual differences and relationships (DIR); The Picture Exchange Communication System (PECS)...
Some important results obtained from a review of studies on early intervention for children with autism spectrum disorder include: the influence of age on the effectiveness of early intervention; effectiveness of interventions; criteria for evaluating the effectiveness of early intervention; conditions for early intervention measures (intervention time/week; intervention context; intervention personnel).
Research group Ozonoff & Cathcart (1998) with the work "
Apply the method " TEACCH in early intervention for children with autism at home “ has implemented intervention intervention by TEACCH for 11 children with autism, 11 children in the control group. As a result, Children who received TEACCH intervention had higher scores on the PEP - R scale than the control group.
Author Lovaas (1987), studied "Teaching autistic children through individual trials - DTT", tested on 19 children with 40h/week intervention and 19 10h/week intervention, 21 children did not receive intervention. As a result, 47% of children with intervention 40 hours/week had normal IQ and adaptive behavior higher than the other 2 groups.
McGee, Morrier & Daly (1999) conducted the study “Incidental Teaching (IT)” in early intervention for children with autism, the subjects were 28 autistic children, the evaluation criterion was the language sample and compared with the children. the same age. The results were that 82% had progress in language and 71% had access to children of the same age.
Applied Behavior Analysis (ABA) was researched and tested by Harrris & Handleman in 2000 on 27 children with autism. As a result, all of these children had IQs and ages consistent with their peers' grades.
Since then, all over the world, early intervention programs for children with autism spectrum disorder have been built based on intervention methods, placed in a whole with a strict process including steps of diagnosis - assessment - early intervention – inclusive education. However, because the above early intervention models are conducted in countries with good conditions (in terms of expert staff, facilities, policy systems and especially the systematicity of early intervention program) cannot be applied directly to the context of other countries that do not have sufficient conditions (such as Vietnam). Therefore, the conduct of applied research is essential to be able to apply the experiences of advanced countries to the specific context of each country.
In addition, in Vietnam, studies on early intervention for children with autism spectrum disorder are also conducted according to basic stages such as screening - diagnosis - evaluation - intervention. However, the systematicity of the stages is not high, which is clearly shown in the practice of early intervention for children with autism spectrum disorder today. Some highlights in the current research on early intervention for children with autism spectrum disorder include: (1) Mentioned the use of a number of intervention programs and methods such as intervention methods. Psychomotor and speech therapy, teaching autistic children to understand emotions, how to deal with the behaviors of children with autism spectrum disorder, application of specific methods such as TEACCH, ABA, PECS... in intervention card. However, studies applying these methods are mainly used at the beginning of testing; (2) Has been and is starting to implement early intervention for children with autism spectrum disorder, in which detection and diagnosis are key steps. Some intervention programs have been implemented, but mainly short-term intervention programs, not really aimed at providing school skills and inclusive education for children. Some scientific reports have mentioned the issue of early intervention for children with autism spectrum disorder, but the issues raised such as early intervention process, early intervention programs... are still general. In particular, there has not been a coordination between forces (health, education, Invalids and Social Affairs, family...) in organizing early intervention for children with autism spectrum disorder.
On the other hand, Children's Hospitals in Ho Chi Minh City and National Children's Hospital in Hanoi are the main facilities that are carrying out early intervention for children with autism spectrum disorder. In which, detection and diagnosis are the key stages, a number of intervention programs have been implemented, but mainly short-term intervention programs, not really aimed at providing school skills and education. inclusive education for children. Hoang Quynh Trang (2008) describes some clinical characteristics in 170 autistic children at Children's Hospital 1. 94% of autistic children have speech delay, 84% do not make eye contact, 97% do not know. pretend play.
Some conclusions of author Pham Minh Muc in the article "
Autism and education of children with autism ", specifically: 1) Autism is a widespread developmental disorder, affecting communication and development. society, which in turn leads to a range of abnormal behaviors as well as abnormal responses to sensory stimuli. 2) Although most children with autism seem to have mental retardation, there are still a few children with Asperger's syndrome who are exceptionally intelligent and do well in school but still have social problems such as children with autism. century. 3) It is necessary to focus on developing social skills for children with autism through changing the environment, teaching complementary skills, teaching social skills directly, or intervening with Friends. 4) To want children to progress in communication, teach them right in the natural environment, both at home and at school, taking advantage of children's natural interests in games to develop and expand their communication abilities.
Research project on "
Method of teaching reading comprehension " for children with autism spectrum disorders at the beginning of primary school ” by Nguyen Nu Tam An (2013) has built a system of teaching methods. reading comprehension for students with autism spectrum disorder at the beginning of elementary school, helping students with autism spectrum disorder to better form the reading comprehension skills required by the early elementary school program
6 .
Dao Thi Thu Thuy also conducted a number of other studies on linguistic behavior for children with autism spectrum disorders such as "
Study on language behavior of children with autism 5-6 years old". age (2012) 7 and “Language behavior adjustment for autistic children 3 – 6 years old based on functional exercises ”
8 The purpose of the study is to build a process to regulate language behavior for children with autism spectrum disorders 3 - 6 years old based on functional exercises to help children with autism spectrum disorder express their needs and desires to others so that they can integrate into the community.
Research on "Measures to develop communication skills for children with autism 3 - 4 years old" by Nguyen Thi Thanh (2014). Research on the theoretical basis for the development of communication skills of children with autism spectrum disorder; Research and evaluate the current situation of communication skills of children with autism spectrum disorder 3 - 4 years old; Current status of communication methods of teachers with children with autism spectrum disorder in the process of organizing teaching activities in preschool. Find out the factors affecting the development of communication skills for children with autism spectrum disorder, as a practical basis to propose measures to develop communication skills for children with autism spectrum disorder 3 - 4 years old at the same time. propose measures to develop communication skills for children with autism spectrum disorders 3 - 4 years old and organize pedagogical trials to verify the feasibility and educational effectiveness of these measures
9 .
In summary, the results of early intervention research for children with autism spectrum disorder in Vietnam are still quite modest compared to the world's achievements and practical needs in our country today. In the future, it is necessary to focus on more systematic and applied research, in addition, special attention should be paid to the unification of terms, approaches to and updating of the latest achievements in the field of science and technology. intervention methods for this young population in the world.
Inclusive education for children with autism spectrum disorder is a form of education in which children Autism spectrum disorder is in the same class as normal children. Inclusive education is considered to be the highest goal that interventions for children with autism spectrum disorders aim at and is also the most preeminent form of education for the development of the majority of children with autism spectrum disorders.
Around the world, studies on inclusive education for children with autism spectrum disorder refer to the following main directions: 1) The effects of subjective and objective factors on children's ability to learn to integrate autism spectrum disorder. Subjective factors include: the child's level of functioning (High functioning autism - HFA or Low functioning autism - LFA), each child's developmental history… Objective factors include: educational history (in particular, did the child receive early intervention?), forms of integration support…; 2) Effective inclusive education measures; 3) The effect of inclusive education on the development of the areas of school skills, communication and social interaction; 4) Compare the effectiveness of inclusive education with that of specialized education; 5) The significance of applying specialized methods (ABA, TEACCH...) to the effectiveness of inclusive education , focusing on long-term effects in the development of children with autism spectrum disorder.
Although there has not been a complete consensus on some of the contents related to autism spectrum disorder (such as the causes of autism spectrum disorder; autism spectrum disorder is a form of physical development disorder or disorder). mental health…) but it can be said that the achievements in research on autism spectrum disorders are very significant, which is reflected in the increasingly improved intervention methods.
Scientists have determined the main research direction now and in the next phase is still research on autism epidemiology (causes, prevalence, factors related to autism spectrum disorder). and effective intervention. In addition, the trend of expanding research on autism spectrum disorders outside of traditional countries (such as the US, UK, and the Netherlands) is also being mentioned, which is confirmed by the Nature Seminar. The Asia-Pacific Century is held every 2 years for countries in the region to initially develop research on the issue of ASD, this is also a scientific forum that Vietnam can guide. next.
For Vietnam, the Education Sector identifies children with autism spectrum disorder as one of the disabled children who need to be educated. Although there is no school specifically for children with autism spectrum disorder, a number of children have been accepted into the system of specialized schools for other types of disabilities as well as inclusive schools. However, transition and integration support programs for children with autism spectrum disorder have not been implemented specifically.
In Vietnam, there have been a number of studies on inclusive education for children with autism spectrum disorder step by step carried out. In the workshop "Autism in Children", the report
"The first step present inclusive education for children with autism spectrum disorder in Hanoi” by Assoc.Prof.Dr. Nguyen Thi Hoang Yen on the basis of summarizing the experience of the future class in Binh Minh kindergarten since 2002. This is considered one of the models of early intervention and inclusive education for children with common disorders. the first autism in our country.
Author Le Anh Nguyet et al (2015) introduced and evaluated an inclusive education model for children with developmental disorders (including children with intellectual development disorders, communication disorders, and autism spectrum disorders). autism, attention deficit hyperactivity disorder,...) at a preschool in Hanoi. The results show that the organization of an intervention class in a preschool for children with developmental disorders has advantages such as convenience, reducing the time and effort of transportation, children have certain changes and progress. However, the model also has many limitations and difficulties, especially in terms of class management and information exchange between stakeholders.
In general, research results on autism spectrum disorders, early detection, early intervention and inclusive education for children with autism spectrum disorder in Vietnam are still very meager compared to the world's achievements and the needs of children with autism spectrum disorders. practical needs in the current country. In the future, it is necessary to focus on more systematic and applicable studies, in addition, special attention should be paid to policies for autistic children, real life situations and barriers to autism. with children with autism today. In Vietnam, in 2010, the National Assembly promulgated the Law on People with Disabilities (up to now, it has been amended and supplemented once in 2013), marking a major turning point in the work of protecting the legitimate rights and interests of people. people with disabilities in general, although this Law does not cover children with autism. It is not until Circular No. 01/2019/TT-BL DTBXH dated January 2, 2019 of the Ministry of Labour, Invalids and Social Affairs stipulating on the determination of disability level by the new disability level determination council. refers to children with autism as one of the forms of disability.
3. Research objectives
- Reviewing the State's legal policies on the rights of autistic children in accessing and enjoying health and educational services.
- Assess the real life situation of autistic children and their families, difficulties in child care and upbringing.
- Assess the status / extent of children with autism accessing the right to and enjoying health and education services in the study area
- Identify barriers affecting access to health and educational services of autistic children in the family and community.
- Make appropriate policy recommendations to meet the needs of accessing health and educational services of each group of children with autism.
4.1. Research object : Current status of policy and legal barriers for autistic children in Nghe An province
4.2. Research object
Autistic children;
Parents or family members with autistic children;
Local government officials;
Medical staff;
School officials with children with autism attending;
Staff of the Autism Child Care Center;
District Department of Labor, War Invalids and Social Affairs.
4.3. Limit research
The survey is carried out in two districts of Yen Thanh, Nghia Dan and Nghe An city, Nghe An province . These are two districts and cities with a large number of children with autism and also represent different population groups: the city and two rural and mountainous districts, especially will also represent a sample of other ethnic groups. each other in the province.
- Time range: October-December 2020
5.
The study used a variety of methods , including: literature review, in-depth interviews and stakeholder group discussions.
5.1 Methods of document research
5.2 In-depth interview
Research and design Guide for in-depth interviews with each target group. The study area selected districts with a large number of autistic children in Nghe An province: Yen Thanh district, Nghia Dan district and Vinh city.
+ In 2 districts: 01 district selects 02 communes, specifically: each commune selects 03 households with autistic children and 01 representative of the district Department of Labour, Invalids and Social Affairs . Total is 14 people
+ In Vinh city: in-depth interviews with 03 autistic children at Nghe An Disability School (public school) and 03 autistic children studying at private schools to compare and contrast; 01 staff working at the school for the disabled in Nghe An province. Total is 0 7 people
Thus, the total volume of in-depth interviews in 2 districts and Vinh city is 22 people.
Interview method: The members of the research team met each person, interviewed according to the prepared in-depth interview questionnaire, recorded the answers and accompanied by an audio recorder to listen and listen again. Additional information when not taking notes in time.
5 .3. Discussion groups:
* In 2 districts, conduct 4 group discussions: Each district conducts 02 group discussions:
Group 1- autistic children and young families. Nghia Dan district (5 people: 3 men, 2 women); Yen Thanh district : 6 women
Group 2- district officials (representatives of People's Committees, officers of Justice, Health, Education, officials of Labor and Invalids) &XH ...) : Nghia Dan District : 7 people (2 men, 5 women), Yen Thanh District: 8 people (1 male, 7 female)
* In Vinh City, there are 03 group discussions:
Group 1- autistic children and young families (12 people: 10 girls, 2 boys)
Group 2- city officials (representatives of the People's Committee, officers of Justice, Health, Education, officials of Labor and Invalids) &XH ...) (9 people);
Group 3 - a group of full-time staff from organizations and centers that care for autistic children (15 people) .
Minutes of in-depth interviews and group discussions were de-tape, typed and edited. The information obtained is quite rich, helping to analyze and write reports on life of children with autism and their families, difficulties in child care and upbringing , identify difficulties and barriers for children with autism in accessing education and health care, To evaluate policies on children with autism from the perspective of several stakeholders.
5 . 4. Observation method
Observations are made in two contexts:
- Context 1: conduct at the child's place to learn about living conditions, limitations in children's daily activities, difficulties in child care and upbringing of parents and families.
- Scenario 2: carried out at the Center for Counseling and Early Intervention for Children with Disabilities Belief, Vinh City, Nghe An Province.
Figure 1. Research analysis framework
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Cộng đồng: Nhận thức, rào cản xã hội
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Gia đình: Tâm lý, nhận thức, điều kiện kinh tế...
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6.
- The study was conducted in Vinh city and two districts of Nghia Dan and Yen Thanh, Nghe An province with a qualitative research method with a small sample size, so the research results are not representative of the main barriers. legislation for all autistic children in Nghe An province, especially autistic children in mountainous areas and ethnic minority areas of the province.
- Due to the characteristics of autistic children in the study area who are unable to communicate (too young, slow to speak, can't speak...) the qualitative interviews are only conducted through parents/persons. representative of the child, the direct consultation of the child was not much and could not be carried out as in the original outline.
- When conducting research in the area, we find out data on autistic children of Vinh City, Nghia Dan district, Yen Thanh district but no statistics are available. Children with autism in mild and severe forms are classified as other disabilities, but there are no specific data. In this report, we will present on the basis of available information about children with disabilities and children with autism in Nghe An so that readers can imagine the relative number and activities related to children with autism. in Vinh City and 2 districts of Yen Thanh, Nghia Dan district, Nghe An province.
P PART 2: MAIN CONTENT
1.1.1 . The concept of autistic children in countries around the world and in Vietnam
1.1.1 . In the world
The concept of autism
Autism syndrome is translated from the term "Autism Spectrum Disorders - ASD", to refer to a psychological disorder that causes difficulties in relationships and communication, affecting the brain development of children. This condition, although present from birth, is rarely detected, until the communication disorders manifest at the age of infancy, with delayed manifestations of language and behaviors. strange micro with different degrees of weight and light. There are many different studies and definitions of autism, but the concept has long been accepted by many medical professionals as a neurological disease accompanied by damage to brain function.
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From the late 70s and early 80s of the 20th century, the term Autism Spectrum Disorders (ASDs) appeared with a broader description including the term autism spectrum disorder. Autism spectrum disorder (referred to as autism) is the name used for a group of developmental disorders affecting the brain, including a group of syndromes: Autism disorder, Rett disorder (Rett's Disorder), Asperger's Disorder, Child Disintegrative Disorder, and other nonspecific pervasive developmental disorders. This brain disorder affects the ability to communicate, interact socially, and respond appropriately to the body. outside world. People with autism tend to have repetitive behaviors or interests and rigid ways of thinking. The severity of autism is different for each person. There are people with autism who still have relatively high functioning, their language as well as their intelligence is not affected. There are many people with severe cognitive impairment and severe language limitations, even never speaking.
According to the Columbia Encyclopedia (1996):
Autism is a type of developmental disability that is caused by neurological disorders that affect the basic functions of the brain. Autism is defined by abnormal development of communication skills, social interaction skills, and reasoning . Boys are 4 times more likely than girls, children can develop normally until 30 months of age, then encounter some disturbances in the autism spectrum.
– In 1999, at the National Autism Conference in the US, experts said that autism should be classified as a pervasive disorder and agreed to give the final definition of autism as follows
: a form of disorder in the group of pervasive developmental disorders that affects many aspects of development but most affects communication skills and social relationships
– Currently, the most complete and widely used concept is the concept of the World Health Organization, released in 2008, autism is fully defined as follows:
“Autism” It is a lifelong form of developmental disability, usually detected during the first 3 years of life. Autism is caused by a neurological disorder that affects brain function. Autism can occur regardless of gender, wealth, race, or social status. Autism is manifested through impairments in social interaction, verbal and nonverbal communication, and restricted and repetitive behaviors, interests, and activities.
Up to now, the diagnostic criteria for autism according to DSM-V (Diagnostic and Statistical Manual of Mental Disorders) was officially released in May 2013 with some point of change in the view of narcissism in order to meet the needs of research and practice. Highlights in this release include:
- Replacing the name pervasive nonspecific developmental disorder (PDD NOS) with the name autism spectrum disorder (ASD),
- The name ASD is collectively used for the 5 disorders as in the previous version.
- Grouping disorders of communication and social interaction as one, so that there will be 2 groups of diagnostic criteria instead of 3 as in DSM-IV.
- Diagnostic criteria are more compact than in previous versions.
The DSM-V diagnostic criteria for autism are as follows:
Must meet the following criteria:
Severe impairment in social communication and social interaction in many settings other than mental retardation with the following 3 signs:
A, Severe impairment in social communication and social interaction in a variety of settings, present or pre-existing:
1. Deficits in socio-emotional exchange, unusual social approach nouns, and inability to carry out normal conversation due to decreased sharing, interest, feelings, and reactions to complete lack of ability to mimic social interactions.
- Deficits in nonverbal and verbal communication behavior used in social interaction; ranges from limited ability to coordinate verbal and nonverbal communication due to anomalies in eye contact and body language, or deficits in understanding and using nonverbal communication, to deficits It's all about facial expressions and gestures only.
- Deficits in the ability to develop and maintain appropriate relationships with a range of developmental disabilities ranging from difficulty adjusting behavior to responding appropriately to social context to difficulty in participating in pretend play and in making friends; to show a lack of interest in the other person's presence.
- Restrictions and stereotypes about behavior, interests and activities, manifested in at least two manifestations, present or pre-existing history:
- Patterns and repetitions of words, movements, or activities with objects (such as repeating simple movements, parodying words, repeating actions with objects, or specific expressions). show).
- Excessive maintenance of routine, patterned verbal and nonverbal behavior or resistance to change (such as moving in a patterned ritual, insisting on a route or food, repeating sentences over and over again). ask or tense up violently when there is a change small).
- Shows a strong interest in certain things with intense emotion and focus (such as intense attachment or persistent preoccupation with unusual objects, narrow interests, and maintaining an attitude too).
- Over- or below-threshold sensory input or interest in an environmental stimulus at an unusual level (eg, indifference to pain/heat/cold sensations, counterreaction to specific sounds and materials) , excessive sensitivity to smelling or touching objects, fascination with lights or rotating objects round).
C, The above signs must be present from an early age (but may not be fully apparent until the age limit is exceeded). term).
D, The above signs must impair social, occupational, or important functional areas is different.
E, The above disorders are not explained by intellectual disability or normal developmental delay; Intellectual disability and autism often co-occur, so a twin diagnosis of intellectual disability and autism is common century.
In summary, autism is a type of lifelong developmental disability that manifests within the first 3 years of life. Autism is caused by a disorder of the nervous system that affects the functioning of the brain. Autism can occur in any individual regardless of gender, race, wealth and social status. Autism is manifested by impairments in social interactions, difficulties with verbal and nonverbal communication, and limited and repetitive behaviors, interests, and activities .
Autistic children
In 1943, Kanner defined autistic children as children who do not establish relationships with people, often have an indifferent attitude, indifferent to people around, have slow speech, mainly communicate. through gestures that sometimes seem outlandish, along with simple, repetitive fun activities.
In 1969, Rutter identified four main features of autism:
- Lack of interest and responsiveness in social relations
- Language disorders: From non-verbal level to eccentric speech
- Anomalous behavior and movement: From limited, rigid levels of play, to complex patterns of behavior that are ritualistic and compulsive
- Early onset
Before May 30, 1978, the National Autism Association in the United States gave the definition: autism is a syndrome of behaviors manifested before 30 months of age with the following main features:
- Disturbances in the speed and sequence of development
- Impaired response to sensory stimuli
- Disorders of speech, language, non-verbal communication
- Impaired ability to relate to people, things, and events.
Thus, there are many different concepts of children with autism. However, these concepts do not contradict each other but complement each other to lead to a complete concept of autistic children.
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1.1.2. In Vietnam
Concept. Autism is an acronym for autism spectrum disorders (ASD). This is a group of neurological disorders that belong to the group of pervasive developmental disorders with attention disorder manifesting in three areas: (1) impairment in communication skills, (2) impairment in skills social skills (i.e. establishing relationships with others), and (3) often repetitive, intermittent behaviors (quoted from the American Psychiatric Association).
In Vietnam, there are no official research figures on the number of children with autism spectrum disorder. But from 2000 to now, the number of children diagnosed and treated with autism has increased. Research on disability model in children of the Department of Rehabilitation of the National Children's Hospital in the period 2000-2007 showed that: the number of autistic children coming to the clinic in 2007 increased 50 times compared to 2000; the number of autistic children coming for treatment in 2007 increased 33 times compared to 2000; the trend of autism increased rapidly from 122% to 268% in the period 2004 - 2007 compared to 2000. Statistics of the Ministry of Labour, Invalids and Social Affairs show that, although there are no exact statistics on children with autism, to In 2009, the National Children's Hospital alone had 1,752 children with autism. In Ho Chi Minh City, if in 2000, there were only 2 autistic children treated, in 2008, there were 324 children, an increase of more than 160 times. These figures do not include the number of autistic children in other hospitals across the country and there are many autistic children who have not been examined and treated in time. It is worth mentioning that autism is not only a pain for families and people with autism but also an economic burden in countries. Early intervention for children with autism is considered the key to helping them maximize their future success and integration into the community both inside and outside of school. When children receive early educational intervention, they gain the skills they need to succeed academically in school. However, apart from the research on autism in Vietnam conducted in the past 15 years, the supporting mechanisms and policies have not met the needs of people with autism.
According to the research results of the independent state-level project of Nguyen Thi Hoang Yen, in Vietnam, a very small percentage of children with autism go to special schools opened by their parents, doctors, and specialists. with tuition fees of 2.5 - 3.5 million/month in the province and 5.5 - 10 million/month in big cities. The research results also show that the cost of caring for and educating children with autism is a big burden for families with autistic children.
Along with the lack of intervention and support models, the State's policies and support for autistic children also have many gaps. Although there are guidelines on certifying children with disabilities, many localities only confirm if children with severe autism are accompanied by visible disabilities such as vision, movement, hearing, speech, inability to take care of themselves.. This has missed many children with mild autism but still have difficulties and functional impairment in living and studying.
The autism problem is not only a health issue, but also a developmental one. A large number of people with autism, without early intervention, without instruction in independent living and community integration skills, will become a significant burden on society. Children and families of children with autism, regardless of their level, are always faced with many challenges. Up to now, there is no method that can completely cure or cure autism. Therefore, autistic children and their families have to face long-term difficulties caused by autism. Children with autism and their families face many challenges from screening, assessment, and diagnosis services; early intervention services; support services for education (inclusive education, special education), health, social, job search... At the same time, these families still have to ensure that they can maintain a normal life.
[3](Excerpt by Hozumi Araki).
The issue of autism also poses many challenges to ministries and sectors such as education, health, and labor. with people with autism, so that this group of people can receive the attention of the social security system. However, autism is not classified as a separate disability, but will be referred to as one of six types of disability. This makes it difficult to diagnose, develop and implement policies on children with autism. Experts, managers and parents of children with autism all agree that if you classify autism as another disability, it is easy to underestimate the effects of autism, if you classify autism as an intellectual disability group or neurological or mental disabilities are not true to the nature of autism's impairments and all of these affect the development of support services for children with autism and their families. Currently, Vietnam does not have any legal documents showing that autistic people are disabled people to enjoy health insurance, subsidies, vocational training...
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1. 1. 3. Classification of children with autism
- Classification by degree: there are usually three levels:
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Mild autism: Children have good communication skills; children understand language but have difficulty expressing, initiating, and maintaining conversations. Non-verbal communication, eye contact, but not often. Good social relations but only when needed, when asked or prompted. Children know how to play with friends, share feelings and interests, but tend to like to play alone. Children have difficulty learning personal and social skills, but when they do, they do it in a stereotyped, rigid way.
- Moderate autism: The child's communication ability is very limited; the child only knows a few words that are directly related to the child, can only speak in sentences of three to four words, cannot make conversation, has very little eye contact. Non-verbal communication is also limited, stopping at nodding - shaking head, pointing. Relationships with relatives are quite good. When playing with young people often only pay attention to toys. Children only imitate and follow requests when they like, the concentration is very short. Children can only do simple social skills such as eating and dressing themselves.
- Severe autism: Children's communication skills are very poor; children say only a few words, usually Talk nonsense, don't make eye contact. Very poor non-verbal communication, often pulling people's hands. Children often play alone, little or no interest in their surroundings, very limited emotions. Children are very hyperactive, the ability to concentrate and imitate is very poor. Children are strongly attracted to special or unusual objects or activities. Children are not able to perform personal and social skills.
- According to the CARS autism scale, based on the results, the scores are divided into 3 categories:
- From 15 to 30 points: no autism;
- From 31 to 36 points: mild and moderate autism;
- From 37 to 60 points: severe autism.
- Classification according to the level of DSM - 5, with this classification, ASD is divided into the following levels of support and levels:
Tier 3: Requires maximum support commensurate with severity; Tier 2: Requires moderate active support; Level 1: Requires necessary support of a mild degree.
1.2.1. American policy
Social protection policy in the US Currently, the US is one of the most developed countries in both research and support for children and their families with autism. Because the United States has a state government below the federal government, the reality is that different states have different policies and assistance programs, depending on state conditions. According to the Autism Association, more than 3.5 million Americans live with autism spectrum disorder. This population growth requires additional care, health and education services. According to a 2014 study by the University of Pennsylvania Perelman School of Medicine, the annual US cost of treating adults and children with autism, including special education and inpatient care, is estimated from $236 billion - $262 billion per year. Overall, children and families of children with autism in the United States will receive support in terms of education, health care, housing, employment, recreation and entertainment, and other benefits. These are ensured through laws, policies, and programs that fall under three different jurisdictions: (1) Laws, policies, and programs that benefit all U.S. citizens, including people with autism. , such as the Social Security Act, passed in 1935 and amended and supplemented many times, (2) Laws, policies, and welfare programs specifically for people with disabilities including autism. , such as the Americans with Disabilities Act (3) Autism-specific laws, policies, and welfare programs, such as the America's Combating Autism Act. All of these laws, policies, and programs exist at three levels - federal, state, and local government - and depending on the type, may be implemented as mandatory or as regulated. local case. Currently, subgroups in the US have implemented strategies to address the needs of people with autism: Thirty-six states have established a task force to deal with autism issues. Twenty-seven states have an active legislative standing committee to address autism needs and policy. Thirteen states create an office or agency that regulates or coordinates autism services. Several states, including Arkansas, New Hampshire, New Jersey, and Utah, have developed registries to track diagnosis and treatment
[5]. In the United States, most laws, policies, and programs that support children and families of children with autism to date include autism in laws, policies, and programs for developmental disabilities or disabilities. Generally speaking. Only recently, when the autism rate became alarming in the US (1/110) and thanks to the tireless advocacy efforts of many parents of children with autism, new policies specifically for autistic children were introduced. started to be passed. Of these, two are important laws related to autism prevention and helping families pay for the costs of behavioral therapy for their autistic child. On December 19, 2006, the Combating Autism Act was passed. This was one of the first federal laws specifically dedicated to autism. Under this Act, the federal government will allocate a budget of $924 million over the five years from 2006 to 2011 for autism prevention and research activities, specifically through screening, education, and research. education, early intervention, and transition to effective therapeutic services, combined with biomedical interventions. This act also makes autism a priority at the federal level of the US government, and assigns the Secretary of the Department of Health and Human Services to lead the level. federal on this matter. On September 30, 2011, this Act was re-approved, with a budget of 693 million over the next 3 years for the following main activities: Financial support for the Department of Disease Control (CDC); Financial assistance to the Department of Human Services; Financial assistance to the National Institutes of Health In 2011, the United States also introduced a reform program on autism insurance that requires private insurance companies to be covered. Covers the costs of ABA behavioral therapy for autism.With this new reform program, the burden on many families will be reduced.However, it is a program that states can choose to approve. Now, 28 states out of 50 have ratified this reform program into law. In 2011, the US Congress also approved a $6.4 million budget- la for the Department of Defense Autism Research Program to launch research programs to help military families with children with autism (Autismspeaks.org).
Case in point of social protection policy in the State of California According to the Department of Developmental Services, the highest regulator in the state of California for developmental disabilities, between 3,500 and 3,700 of the 500,000 children born each Every year in California will be diagnosed as autistic children and currently California has about 35,000 autistic people. With a population of about 37 million people and a very diverse culture, California is like a country in miniature. As a pioneer state in many areas - including culture and technology, California is also considered a pioneer in the research and application of different service models to help children and families with autism. . Since 2007, California has designated April every year as Autism Awareness Month. Basically, since the 1960s, California has switched to a community-based care model for these subjects. Since then, California has piloted a model of centralized assistance and comprehensive management through a single focal point, the Regional Centers - private nonprofit organizations that the government the state will sign the partnership and use the money from the budget to pay them. These centers operate in compliance with the Lanterman Law. The Lanterman Law provides that people with developmental disabilities and their families have the right to the services and supports needed to live as people without disabilities. This law prescribes a model of services and supports for people with disabilities and their families through a network of local centers and service providers. The law also instructs individuals and families with disabilities on how to develop and use an individualized plan to obtain needed services, how to act when their rights are violated, and how to develop and support the disability protection system. To date, in California, this is still the most basic law for people with developmental disabilities in general and people with autism in particular. Thus, in California, the sponsorship system for people with autism in particular and for developmental disabilities in general is a comprehensive and centralized one-stop system. Families of children with autism are deeply involved in all stages and services are implemented in the community. However, due to the limited state budget, many families also have to wait a long time to access the desired services provided by the local center; As a result, some families have taken their children to private therapy facilities and have to pay for these services out of their own pocket. To address this issue, the state of California recently passed the Autism Insurance Reform Act. On October 9, 2011, California Governor Jerry Brown passed the Autism Insurance Reform Act. California is the 28th state in the country to pass this law. This law requires insurance companies to pay for therapy services for children with autism such as occupational therapy, speech therapy, physical therapy, and behavioral therapy instead of forcing their families to pay for them. Autistic children spend money like today. In particular, insurance companies will also pay for early intervention services, such as ABA, because it is scientifically proven that early intervention overcomes many difficulties for children with autism, thereby reducing costs and time for families of children with autism.
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1.2.2. Social Protection Policy in China
China is a country very close to Vietnam in terms of culture and has a modern political - economic - social history quite similar to Vietnam. Although sponsorship policies and programs in China are still underdeveloped, it is beneficial for Vietnam to learn from what they have done. In China, autism was first introduced as a developmental disorder in 1982, 39 years after Leo Kanner introduced the syndrome. The first person to describe autism in China was Dr. Tao in an article titled "Problems of Diagnosis and Classification of Autism in Infants". Although China has had the Chinese Classification of Mental Disorders since 1981, it was not until 1995, when it was revised and supplemented for the second time based on the International Classification of Mental Disorders.
ICD-10 (International Classification of Diseases-Nine) and DSM-IV, the new Chinese Classification of Mental Disorders includes autism in the content of developmental disorders. However, so far, China has not considered autism as an irreversible disability and there is no reliable information on the prevalence of autism in children and the population still does not have much. information about autism . Due to the delay and bias in understanding and disseminating knowledge about autism, so far, only a handful of autism treatment centers have been developed in China. In 2003, the first non-governmental autism center opened in Shanghai was the Shanghai Autism Training Center; To date, there have been a few more centers with a capacity of treating about 150 children while scientists estimate there are about 8000 children with autism in Shanghai. In Beijing, three more advanced centers have recently opened. Most autism centers in China are non-governmental, opened by the children's parents and self-help. Meanwhile, research by scientists shows that families of children with autism in China are bearing a lot of financial burden in caring for and educating their children. According to a study by Xiong and colleagues (2011) with 227 families of children with disabilities and normal children, families of children with autism are the ones with the biggest financial burden, higher than children with disabilities. physical and other mental illnesses. Some studies have shown that families with children with autism often have to make a lot of sacrifices, especially mothers, to care for their autistic child; they often consider quitting their jobs to invest time in treating their children, and at the same time, they are torn by the financial burden of the family when they have to quit their jobs (Hozumi Araki)
Currently, the Chinese government has hardly developed any sponsorship programs for families and children with autism. Financially, families with children with autism still have to bear the financial burden that comes with caring for a child with autism. Regarding education and some basic rights issues, China already has a number of laws regulating the rights of people with disabilities that people with autism can also enjoy. In terms of education, special education for children with disabilities was first introduced to children with hearing loss, vision impairment, and mild mental retardation in 1978. It was not until the late 1990s that children with autism did not develop autism. start to get into special schools, or inclusive schools, but the majority still go to non-governmental autism centers set up by private or non-governmental organizations. Education policies for children with disabilities began to be officially developed in the mid-1980s with the passage of three important laws: the Compulsory Education Law of 1986 under which all Chinese children were required to be universal. access education to the end of grade 9; Law on Protection of Persons with Disabilities 1990 and Law on Education for Persons with Disabilities 1994. However, the latter two laws do not address people with autism; and the Education Law of 1986 only has three subjects: hearing impaired, visually impaired, and mildly mentally retarded. Therefore, while special schools for children with hearing, visual impairment and mental retardation are established, children with autism face many difficulties in going to school because they are still not recognized as a form of disability. Regarding other rights, the 1982 Chinese Constitution and its amendments in 1988, 1993, 1999 and 2004 both affirm that people with disabilities have the same civil rights as all other citizens. The Law on Protection of Persons with Disabilities passed in 1982 and amended in 2008 ensures the rights of people with disabilities, including the rights to rehabilitation, education, employment, a cultural life, and welfare. social, and legal responsibilities. The 2008 revised law contains preferential provisions on education and employment for people with disabilities. The Chinese government stipulates that all recruitment agencies must provide at least 1.5% of employment opportunities for people with disabilities; however, provincial governments are allowed to set specific quotas for their provinces (Nguyen Thi Hoang Yen et al.)
[7]. Basically, China only has framework provisions on the law related to the rights and education of people with disabilities in which autism has recently been included in the law. Specific government support policies and programs have not been implemented in depth yet. Instead, families with autism in China have had to take the responsibility of taking the lead and exploring and supporting each other. For example, one of the first centers specifically dedicated to autistic children and one of the most prestigious centers to date in China is the Autism Academy established in March 1993 in Beijing. This academy was founded by a mother of an autistic child. When she went to Beijing to seek help for her son, Jiao met Dr. Da, the head of the Beijing Autism Society. With the help of Dr. Da, Ms. Jiao started an instruction class for six autistic children at a kindergarten in Beijing and gradually expanded into a multi-functional academy.
1.2.3. Social protection policies in some other countries
In Thailand, according to the Law on Persons with Disabilities BE 2551 (2008), people with disabilities can receive free educational services and other resources for all levels and improve the Thai education system to improve the quality of their lives. life and independence of people with disabilities through empowerment programs. The Thai government also provides major support in the education system for people with disabilities including autism, including: - Free education for children with disabilities and autism from early intervention, primary education, education secondary, vocational education to higher education (15 years); - The right to choose a service method that ranges from formal education, non-formal education and alternative education. For example, parents can set up institutions, schools or educational support centers for children with autism. In the legal documents, autism is clearly mentioned in 1 group in the disability classification: 1. Visually impaired 2. Hearing or communication impaired 3. Impaired physical mobility 4. Impaired mental abilities mental or behavioral or autistic 5. Intellectual impairment 6. Learning impairment Early treatment for ASD in Thailand consists of a medical program with family involvement and then incorporating a teacher further education, basic or alternative education, pre-vocational, vocational and higher education programs. In Singapore, autism is described as a developmental disorder involving the brain. Accompanying this disability classification are many regimes on support, social-educational services, schools, etc. In Japan, autism is considered a type of disability, from which the Government built develop programs to support early detection of children with autism, support autistic children to be treated from infancy to school and adulthood. Japan also has policies to subsidize business owners from 500,000-1,350,000 Yen/year if they recruit or employ people with autism. State agencies also prioritize the use of goods and services of autistic people such as papers, office supplies, food, printing, washing, information processing, tape recording, etc. to ensure they have job matching ability
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Autism is a pervasive developmental disorder in children, including severe impairments in communication, social interaction, and limited functioning. A typical child with autism may have disturbances in many developmental skills such as self-care, language, behavior, social communication, emotional intelligence, etc.
As recognized by the United Nations, autism is a lifelong disability, caused by complex disorders of brain function, with manifestations of impaired interaction and social relationships. Thus, autistic children are considered disabled children. Over the years, the Party and State have
[9]paid special attention to people with disabilities in general and children with disabilities in particular. That is clearly shown through legal documents and policies for people with disabilities, including children with autism .
In terms of legislation, in general, Vietnam has a legal system with many commitments to support people with disabilities. In particular, the Constitutions of Vietnam from 1945 up to now have affirmed the responsibility of the state and society for people with disabilities in general and children with disabilities in particular, which are:
- Right from the time of national independence, in 1945, the first Constitution of independent Vietnam in 1946 affirmed
Article 6. All Vietnamese citizens have equal rights in all aspects of politics, economy and culture
Article 7.- All citizens who are old or disabled and unable to work are entitled to help. Children are hunted in terms of upbringing
- Article 32 of the 1960 Constitution stated:
Employees have the right to material help when they are old, sick, or lose their working capacity. The State gradually expands social, medical and medical insurance organizations to ensure that workers enjoy that right.
- Article 74 of the 1980 Constitution:
Helpless elderly and disabled people are supported by the State and society
- Article 59 of the 1980 Constitution:
The State and society create conditions for disabled children to learn appropriate culture and vocational training
- Article 67, 1992 Constitution:
War invalids, sick soldiers and families of martyrs are entitled to preferential policies of the State. War invalids are provided with favorable conditions for rehabilitation, have jobs suitable for their health and have a stable life.
Elderly people, disabled people, and helpless orphans are supported by the State and society
The 2013 Constitution guarantees all civil rights, which includes state support for people with disabilities. The Law on People with Disabilities promulgated in 2010 and many Decrees, Circulars and regulations also specify the rights of people with disabilities to equal access to health care, education, vocational training, employment, and transportation. public communication, information technology, cultural and entertainment activities... However, there are also gaps between policy and actual implementation. The Socialist Republic of Vietnam signed the United Nations Convention on the Rights of Persons with Disabilities on October 22, 2007 and officially recognized and ratified it on February 5, 2015.
The first is the Law on People with Disabilities ( Law No. 51/2010/QH12) , which clearly states in Article 3, Chapter I, PWDs include 6 groups: movement disabilities, hearing and speaking disabilities; vision disability; neurological and mental disabilities; intellectual disability and other disability; in which autistic children belong to other disability groups. Chapters II, III, IV and V of the Law also have specific regulations on health care, education, and vocational training... for people with disabilities, including autistic children.
Decree No. 28/2012/N D-CP of the Government detailing and guiding the implementation of a number of articles of the Law on Persons with Disabilities. In Clause 4, Article 2, Chapter 2 on types of disabilities, it is defined that “neural and mental disabilities are disorders of perception, memory, emotions, behavioral control, thinking and expression with words and expressions. , acting abnormal".
And considering this decree, children with autism are also considered disabled. The Disability Law regulates the roles and responsibilities of the community and family towards children with disabilities, including children with autism.
In addition, the Law on Protection, Care and Education of Children 2004 has very specific regulations on health protection, foster care, education, entertainment and social services for children. children, those regulations are mentioned in chapter 2, chapter 3 (articles 24, 25, 27 and 33).
The 2016 Children's Law also clearly stipulates the responsibilities of the state, family and community in the care and education of children, including children with autism. In this law, there are also very specific provisions on children's rights and obligations, children have the right to life, health care, right to foster care, education, learning and development. especially in Chapter I, Article 10 of this Law, there are provisions on groups of children with special circumstances including:
a) Children who are orphans of both parents;
b) Abandoned children;
c) Children without support;
d) Children with disabilities;
dd) Children infected with HIV/AIDS;
e) Children violate the law;
g) Children addicted to drugs;
h) Children who have to drop out of school to earn a living have not completed the universalization of lower secondary education ;
i) Children are seriously harmed physically and mentally as a result of violence;
k) Children are exploited;
l) Children are sexually abused;
m) Children being trafficked;
n) Children suffering from serious diseases or diseases requiring long-term treatment belong to poor or near-poor households;
o) Migrant children, refugee or refugee children whose parents have not been identified or have no caregiver.
The Government shall detail groups of children with special circumstances and appropriate support policies for each group of children with special circumstances.
Referring to Education for People with Disabilities, in Clause 1, Article 2 of Joint Circular No. 42/2013/TTLT-BGDĐT-BLDTBXH-BTC stipulating policies on education for PWDs, such as: PWDs are allowed to enroll at higher education levels. 3 years older than the legal age limit. Decree 49/2010/ND-CP dated May 14, 2010 stipulates that people with disabilities are entitled to tuition fee exemption and reduction, support for study expenses, specifically, children with economic difficulties are supported with study expenses at the same rate. support 70,000 VND/month to buy books. The time to enjoy is according to the actual study time and does not exceed 9 months/school year.
Regarding health care for people with disabilities: The 2009 Law on Health Insurance, revised and supplemented on June 13, 2014 stipulates that people with disabilities who participate in health insurance will enjoy priority in terms of premium rates, prescribed benefits, severe and special disabilities. Severe cases (PWDs being children under 6 years old… are supported with 100% of health insurance premiums (Article 12, Amended Law on Health Insurance). In addition to general support such as ensuring 100% of children under 6 years old are issued with health insurance cards; For children over 6 years old, if they belong to poor or near-poor households, they are also supported by the state. The State has a policy to support heart surgery for children of poor, near-poor households, children who are subject to social protection, if those unfortunate children with autism who belong to this group will benefit…
In addition, the government has also issued other decisions and decrees related to care, education, rehabilitation and social support for people with disabilities. Specifically, it can be mentioned:
- Decision No. 32/2010/QD-TTg dated March 25, 2010 of the Prime Minister approving the Project on Development of the Social Work Profession for the period 2010-2020.
- Decision No. 1019/QD-TTg dated August 5, 2012 of the Prime Minister approving the Scheme to assist people with disabilities for the period 2012-2020
- Decision No. 1215/QD-TTg dated July 22, 2011 of the Prime Minister approving the project on social assistance and rehabilitation for mentally ill people and people with mental disorders based on the elderly community. period 2011-2020.
- Decision No. 1929/QD-TTg dated November 25, 2020 of the Prime Minister approving the social assistance and rehabilitation program for the mentally ill, autistic children and people with mental disorders based on community in the period of 2021 - 2030. General and specific goals related to children with autism are as follows: 1 ) General goal : Mobilizing the participation of society, especially the family and community, to increase material and spiritual support, care autistic children; Screening , detecting and supporting intervention and prevention of severely mentally ill children with autism .
2) Specific objectives: a) Period 2021 -2025
- Every year at least 80% of children with autism access health services in different forms; 70% of children from birth to 6 years old are screened for early detection of autism spectrum disability and early intervention; At least 10,000 children with severe autism receive appropriate treatment, education, rehabilitation, and support in social support and rehabilitation facilities.
- At least 80% of children with autism spectrum disabilities at preschool and high school age have access to education.
- At least 60% of social support establishments taking care of autistic children have gymnastics, sports, cultural and artistic clubs of autistic children; attract at least 20% of autistic children to participate in physical training and sports; 20% of children with autism and cultural, artistic and performing arts participants at the facility.
- At least 60% of depressed people, autistic children receive counseling, psychotherapy, social rehabilitation and other social work services in the community and care facilities, rehabilitation for the mentally ill, medical facilities.
- At least 30% of families with children with autism receive training to raise awareness and skills on community-based care and support for children with autism.
b) Period 2026 - 2030
- Every year about 90% of children with autism access health services in different forms; 80% of children from birth to 6 years old are screened for early detection of autism spectrum disability and early intervention; approximately 20,000 children with severe autism receive appropriate treatment, education, rehabilitation and social support in rehabilitation and social support facilities.
- At least 90% of children with autism spectrum disabilities at preschool and high school age have access to education.
- At least 70% of social support establishments taking care of autistic children have gymnastics, sports, culture and arts clubs; attracting 50% of autistic children to participate in physical training and sports; 30% of children with autism participate in culture, arts and performing arts.
- At least 70% of children with autism receive counseling, psychotherapy, social rehabilitation and use other social work services in the community and in care facilities and medical facilities.
- At least 60% of families with autistic children have improved awareness and skills on caring and supporting children with autism.
Decision No. 1929/QD-TTg dated November 25, 2020 of the Prime Minister is very important to help communities, families and children with autism receive better attention and care.
POLICIES OF THE MINISTRY OF EDUCATION AND TRAINING
The Ministry of Education and Training has coordinated with other promulgations to issue educational policies for children with disabilities, including children with autism spectrum disorders, such as:
- Joint Circular No. 58/2012/TTLT-BGDĐT-BLDTBXH (dated December 28, 2012) stipulating conditions and procedures for establishment, operation, operation suspension, reorganization and dissolution of support centers inclusive education development
The circular consists of 5 chapters and 33 articles. Public and non-public centers with functions and tasks:
1. Disability detection to advise on the selection of appropriate education methods;
2. Implement early intervention measures for people with disabilities in the community to choose appropriate education methods;
3. Counseling on psychology, health, education and career guidance to select appropriate education methods;
4. Supporting people with disabilities at the director's office, at educational institutions and in the community;
5. Provide specific teaching and learning content, equipment and materials suitable for each type of disability and degree of disability.
- Joint Circular No. 42/2013 /TTLT-BGDĐT-BLDTBXH-BTC (dated December 30, 2013) stipulating policies on education for people with disabilities; including: priority admission and enrollment; exemption or reduction of a number of subjects, subjects or educational activities in the educational program; assessment of educational outcomes; tuition fee policy; policies on scholarships and support for means and school supplies.
- Circular No. 03/2018/TT-BGDĐT (January 29, 2018) promulgating regulations on inclusive education for people with disabilities; including: organization and inclusive education activities for people with disabilities; duties and powers of teachers, lecturers, educational support staff for people with disabilities and people with disabilities.
- Decision No. 338/2018 /QD-BGDĐT (January 30, 2018) promulgating the Education Sector's Plan on Education for People with Disabilities in the 2018-2020 period.
Specific goals for 2020
- At least 70% of people with disabilities of preschool and general age have access to quality, equal and friendly inclusive education
- At least 50% of administrators, teachers, and education support staff for people with disabilities have received professional training and retraining in education for people with disabilities.
- At least 40% of provinces and centrally run cities have centers to support the development of inclusive education.
- 100% of provinces, centrally run cities and educational institutions are allowed to disseminate and implement legal documents on education of people with disabilities.
POLICY FROM THE MINISTRY OF HEALTH
- The Law on Health Insurance 2008, amended and supplemented in 2014, No. 46/2014/QH13, has some regulations on the implementation of health insurance for people with disabilities and for children under 6 years old.
POLICY OF THE MINISTRY OF LABOR, INVALUATIONS AND SOCIALITY
- Circular No. 01/2019/TT-BLDTBXH dated January 2, 2019 stipulating the determination of disability level by the Disability Determination Council, has identified the type of autism spectrum disorder and included in other disability groups.
In Clause 3, Article 6 of the forms for determining the degree of disability, it is clearly stated that a person with a disability "Has a conclusion from a provincial-level medical facility or higher on autism spectrum disorder or rare diseases" is eligible. to participate in disability determinations and access disability policies. This can be considered a good sign for the autistic community when their rights are recognized. This is the first sub-law document to officially address people with autism and is a step forward in the implementation of the Disability Law.
- Decree 20/2021/ND-CP (dated March 15, 2021), stipulating social assistance policies for beneficiaries of social protection. Contents include regulations on regular social assistance policies in the community; receive care and nurture in the community; emergency social assistance and care and nurturing at social assistance establishments.
From July 1, 2021, Decree
20/2021/ND-CP officially takes effect, the monthly support level for people with disabilities will increase. This Decree clearly stipulates the subsidy regime for each form of disability, the regime for family members to take care of the disabled, the granting of health insurance for the disabled, support for the disabled. funeral expenses, support for education, training and employment… Therefore, groups of children/autistic people with confirmed disabilities will receive appropriate allowances and benefits.
- Decision No: 1069/QD-LDTBXH (September 27, 2021) on promulgating a plan to implement social assistance and rehabilitation programs for mentally ill people, autistic children and people with mental disorders community-based for the period 2021-2025.
1. Common goal
Mobilizing the participation of society, especially families and communities, to increase material and spiritual support, care and rehabilitation for mentally ill people, autistic children and people with mental disorders to integrate community, stable life; Screening, detecting and supporting intervention and prevention of people with mental disorders, especially autistic children with severe mental illness, contributing to ensuring social security and improving the quality of social support services for children. psychopaths and psychopaths.
2 . Detail goal
a) Completing legal documents on social assistance and rehabilitation for mentally ill people, autistic children and people with mental disorders based on the community.
b) Every year at least 80% of mentally ill people, 80% of autistic children and people with mental disorders access health services in different forms; 70% of children from birth to 6 years old are screened for early detection of autism spectrum disability and early intervention; approximately 10,000 children with severe autism receive appropriate treatment, education, rehabilitation and support in social assistance and rehabilitation facilities.
c) At least 80% of children with autism spectrum disabilities at preschool and high school age have access to education
d) At least 20,000 psychopaths and people with mental disorders are supported with career guidance and occupational therapy at social support establishments; at least 10,000 households with mentally disturbed people who have needs and are eligible for loans with preferential interest rates as prescribed.
dd) 80% of mentally ill and mentally disturbed people with financial difficulties are provided with free legal services in accordance with the law on legal aid when in need.
e) Every year, at least 80% of severely mentally ill people who commit acts dangerous to their family and community and 100% of mentally disabled people are received, cared for, and rehabilitated at alternate support facilities. XH.
g) At least 60% of social support establishments taking care of mentally ill people, autistic children and people with mental disorders have clubs for physical training, sports, culture, and arts of mentally ill people, children with autism and autistic children. mind troublemakers; attract at least 20% of mentally ill people, autistic children and people with mental disorders to participate in physical exercise and sports; 20% of mentally ill people, autistic children and people with mental disorders participate in culture, arts and performing arts at the facility.
h) At least 60% of depressed people, autistic children and people with other mental disorders at high risk of mental illness and psychopaths receive counseling, psychotherapy, social rehabilitation and use use other social work services in the community, care and rehabilitation facilities for the mentally ill, and medical facilities.
i) At least 30% of households with psychopaths, 30% of households with autistic children and people with mental disorders at high risk of mental illness receive training to raise awareness, skills in care, support and mental health. Community-based rehabilitation for people with mental illness, autistic children and people with mental disorders.
k) At least 60% of staff, social work staff and social work collaborators in the field of mental health care at grassroots and community levels have their capacity improved through professional training, retraining, retraining, major.
Summary
- Until now, experts have not been able to determine the exact cause of this syndrome.
- In the context of Vietnamese society, when social prejudice against people with autism and autistic children is still quite heavy, resources for health and education have not been properly invested, access to and The use of health and educational services tends to increase, the implementation of policies for autistic children is very important for families and children with autism.
- But at present, the policy for autistic people in general and autistic children in particular has too many problems and in fact is not implemented because autism is not a separate disability.
- Therefore, in order for autism to be considered by professional agencies and policy makers, first of all, there needs to be a consensus from awareness to action in the policy advocacy process. In this way, people with autism in general and children with autism in particular have the opportunity to fully enjoy priority policies and the best medical, educational, and social protection support. best of the State.
1.4.
According to the report on the situation of regular subsidies for people with disabilities in the community, in 2020 of Nghe An Province, the number of children under 16 years of age with severe disabilities is 5,457 children, and 2,097 children with extremely severe disabilities, of which Nghia district. The group has 175 children with severe disabilities and 58 children with severe disabilities, Vinh city has 242 children with severe disabilities and 181 children with special severe disabilities, Yen Thanh district has 528 children with severe disabilities and 224 children with special disabilities. heavy. Thus, of the three areas, Yen Thanh district has the most severely and especially severely disabled children and perhaps also the most autistic children.
Table 1. Report on the status of regular allowances for people with disabilities
in the community (in 2020 )
| TT |
District, City, |
People with disabilities |
| Total number of people with disabilities |
Severely disabled people |
People with disabilities
especially heavy |
| Children (under 16 years old) |
From 16-60 years old |
Elderly (from 60 years old and above) |
Children (under 16 years old) |
From 16-60 years old |
Elderly (from 60 years old and above) |
| |
Subsidy coefficient |
1.5 |
2.0 |
2.0 |
2.0 |
2.5 |
2.5 |
| first |
Nghia Dan District |
1881 |
175 |
973 |
284 |
58 |
219 |
172 |
| 2 |
City of Vinh |
2800 |
242 |
1185 |
457 |
181 |
502 |
233 |
| 3 |
Yen Thanh District |
8657 |
528 |
3983 |
2625 |
224 |
760 |
537 |
| Nghe An province |
67.773 |
5.457 |
30,342 |
18,169 |
2.097 |
7.036 |
4.672 |
(Source: Report on the situation of regular social protection benefits in the community in 2020 , Nghe An Department of Labor, War Invalids and Social Affairs )
Situation of children with autism in Vinh City, Nghe An province
On September 26-27, 2020, the National Children's Hospital coordinated with the Vinh City Medical Center, Nghe An Province to screen children for autism and guide intervention families in Vinh city, Nghe An province. An. Participating in the program, doctors from the Department of Psychiatry and Rehabilitation, National Children's Hospital conducted examination and diagnosis of autism spectrum disorder and other developmental disorders for suspected children after Screening at ward health stations by paper tools and online tools. Of the 153 children who came to the clinic, there were 36 children with autism spectrum disorder, 35 children with mental retardation, the rest with speech delay, hyperactivity, cerebral palsy and other problems.
At the Children's Fund in Nghe An province, in 2019, about 45 parents brought their children every day to attend a special educational therapeutic intervention program. These are children with autism - a disorder of behavioral development, language and social interaction. The vast majority of children live in Vinh city, a few come from neighboring districts. It is very difficult for Vinh City to make statistics on the number of children with autism, because some parents take their children for health check-ups at the National Children's Hospital, some parents do not report to medical facilities or labor officials- Ward level society.
Situation of autistic children in Nghia Dan district, Nghe An province
According to statistics from the communes of Nghia Dan district, on October 12, 2021, the whole district has 84 children with autism. Nghia Dan is a midland district with many difficulties of Nghe An, with nearly 70,000 inhabitants, of which children under 18 years old account for one third of the population. The health care conditions of the people in general, especially pediatrics, are still limited.
Table 2: Number of children with autism in communes and districts of Nghia Dan
| Commune |
Quantity |
Commune |
Quantity |
Commune |
Quantity |
| Nghia An |
first |
Nghia Lac |
2 |
Nghia Son |
|
| Nghia Binh |
2 |
Nghia Lam |
4 |
Nghia Thanh |
8 |
| Nghia Duc |
3 |
Nghia Loc |
15 |
Nghia Tho |
4 |
| Nghia Hieu |
2 |
Nghia Phu |
|
Nghia Thinh |
4 |
| Meaning Society |
2 |
Nghia Long |
|
Nghia Trung |
ten |
| Nghia Hong |
3 |
Meaningful Benefits |
2 |
Nghia Yen |
5 |
| Nghia Hung |
2 |
Meaning Mai |
first |
TT Nghia Dan |
5 |
| Nghia Khanh |
5 |
Nghia Minh |
4 |
|
|
From December 19-20, 2018, the National Children's Hospital had a program to work at the Medical Center of Nghia Dan district, Nghe An in the project of Pediatric primary health care and training. This is a comprehensive professional support program to train professionals and improve the quality of medical examination and treatment, helping children in disadvantaged areas to access medical examination and treatment as close to health care as possible. health at the National Children's Hospital.
For Nghia Dan Medical Center, the Pediatric Department is being paired with the Emergency Resuscitation unit; The unit has not been able to meet the needs of Pediatric medical examination and treatment. Various types of pediatric services have not been deployed. Currently, in addition to the usual Pediatric Medical Examination and Treatment, the unit has only deployed neonatal unit. Therefore, the cooperation with the National Children's Hospital in the near future will be a new step in the new time, especially in the field of pediatric health care of the Medical Center of Nghia Dan district.
According to the content of the signed agreement, in the near future, the National Children's Hospital will support Nghia Dan Medical Center with 5 basic contents:
Staff training: training, technology transfer, consulting, professional support in the field of pediatrics, online training in specialties, appointing staff who are graduated residents to work. at the hospital alternately.
Technical transfer, specialized training to improve professional knowledge
Scientific research: conducting scientific research on local epidemiology, implementing a number of scientific research projects on public health in Nghia Dan district.
Support medical equipment.
Hospital management: Hospital quality management, human resource management, finance, nursing management, anti-infection work, support in building Telemedicine system
The Center for Continuous Training and Direction of Pediatrics - National Children's Hospital and the specialized department of Nghia Dan District Health Center will act as a direct focal point to receive, exchange and resolve all cooperation contents between the two sides. two units.
Situation of children with autism in Yen Thanh district, Nghe An province
According to statistics from communes of Yen Thanh district, on October 16, 2021, the whole district has 110 children with autism. In the district, there are a number of classes to teach autistic children at home by teachers who graduated from Psychology and Social Work.
Table 3: Number of children with autism in communes and districts of Yen Thanh
| Commune |
Quantity |
Commune |
Quantity |
Commune |
Quantity |
| Bac Thanh |
2 |
Hau Thanh |
2 |
Tomb of Thanh |
3 |
| Bao Thanh |
2 |
Hoa Thanh |
2 |
Lien Thanh |
2 |
| Cong Thanh |
5 |
Hong Thanh |
3 |
Long Thanh |
2 |
| Dai Thanh |
2 |
Component |
3 |
Ly Thanh |
first |
| Dong Thanh |
3 |
Hung Thanh |
3 |
Ma Thanh |
2 |
| Do Thanh |
5 |
Inaugurate |
3 |
Minh Thanh |
2 |
| Duc Thanh |
2 |
Kim Thanh |
first |
My Thanh |
4 |
| Nam Thanh |
first |
Increase into |
5 |
Carried into |
2 |
| Nhan Thanh |
5 |
Tan Thanh |
4 |
Loyal |
2 |
| Phuc Thanh |
5 |
Tay Thanh |
2 |
Van Thanh |
5 |
| Phu Thanh |
4 |
Thinh Thanh |
2 |
Vien Thanh |
2 |
| Quang Thanh |
2 |
Town |
2 |
Vinh Thanh |
4 |
| Son Thanh |
3 |
Tho Thanh |
2 |
Xuan Thanh |
4 |
CHAPTER 2. real life situation and legal policy barriers in accessing education and
Autistic children's health
2.1. Reality of life of autistic children and their families
2. 1.1 Some characteristics of autistic children in the study area
Today, many research results have shown that autism is a broad spectrum of closely related disorders with intertwined symptoms. Autism spectrum disorders appear in infants and young children causing delays in many areas of development such as learning to speak, play, and interact with others.
Regarding some characteristics of autistic children in the surveyed target group, the results show that the number of autistic boys is more than girls, the highest age of autistic children is 9 years old. There are no autistic children in poor households.
The signs and symptoms of children with autism vary in severity, and the time when symptoms appear are also different. Children are diagnosed with the following specific symptoms :
“
My child still has a lisp and has normal movements; do not have many skills to play and use objects, the ability to play is still poor, or plays alone, the ability to understand the surrounding objects and phenomena is still poor. I rarely play with friends of the same age, I only like to play with 4-5 year olds. My child's ability to remember information is very poor and quickly forgets. ( Parental group , Nghia Dan district, Nghe An province).
Many cases of children with autism have difficulties with mobility, communication and poor social interaction.
“
My child is also one of the detected cases of autism. In general, my skills are still very weak. I also know how to throw a ball, but for fine motor skills, I know how to thread beads and hold crayons, and also know how to dress and eat by myself. However, the child does not have the ability to communicate, has no language, and has poor perception. I also have behavior of running around, shaking my hands, talking nonsense, not being able to go to the toilet by myself ." ( Parental Group, Vinh City, Nghe An Province).
“My child has weak mobility, poor self-service ability, poor communication , poor integration, or abusive behavior, crying on the yard, despite receiving loved ones, and distinguishing from outsiders” ( Parent group , Nghia Dan district, Nghe An province).
“
My child is also a problem child. I studied intervention from the age of 2.5, but now the level of effectiveness is not high. His fine motor skills and gross motor skills are not perfect. His awareness is still poor, and he has not kept up with his peers. We also look for intervention classes for children, families also cooperate with intervention teachers and spend more time educating children at home.” ( parental group , Yen Thanh district, Nghe An province).
However, for some children, signs are often ignored and detected later: “
For my child, the time when he discovered he had autism was at the age of 6 because he couldn't follow his friends when he went to grade 1. In case my child went to the doctor, he had difficulty in normal skills such as communication, learning, self-care skills. I have a mental retardation, as well as a physical retardation. In addition, he also has difficulty in communication and knowledge acquisition. Therefore, studying at school faced many difficulties and it was difficult for him to integrate into the normal learning environment like other students. ( Parental group , Nghia Dan district, Nghe An province).
The detection of abnormalities and bringing the child to the doctor is mostly done by the family when the child shows signs of delay in speech, lack of concentration, hyperactivity, etc., but not the detection and guidance of medical staff. , including paediatricians. This shows that most grassroots health workers, pediatricians lack knowledge about developmental monitoring and developmental diseases, as well as knowledge about autism disorders.
In addition to the groups of children who have many problems with cognition, self-service skills and social skills as above, some cases have
" mild " conditions due to intervention and support .
concentrate. When I get intervention, I feel better, I know better, when my parents ask me I know the answer." ( Parental group , Nghia Dan district, Nghe An province).
“
My son was diagnosed with autism in 2017, at the age of 3. Since the intervention, he has reduced bad behavior, knows some self-service skills, understands and follows some basic commands.” (Parental group discussion, Vinh City, Nghe An province).
It can be seen that autistic children face deficiencies in many aspects of life, a disadvantage compared to other social groups. Children do not know how to take care of themselves, do not have good motor skills, do not know how to use non-verbal behaviors such as looking directly, do not know how to show eyes, facial expressions and gestures to communicate with others. Therefore, lack of social relations, lack of interaction leads to difficulties in daily communication, leading to difficulties for parents when communicating with children.
Table 4. Some manifestations of autistic children in the study area
| Language |
- Slow speech, inability to talk.
- Repeated use of some words |
| Communicate |
- Inability to socialize
- Do not make eye contact when facing other people.
- Inability to interact with others. |
| Behavior |
- Poor gross and fine motor skills.
Difficulty using or understanding nonverbal cues such as posture, facial expressions, and gestures.
- Run and jump |
| Feel |
- Don't laugh.
- Screams, cries, gets angry easily |
| Awareness |
- There are repetitive, unconscious movements. |
2.1.2 . Difficulties in caring and nurturing children with autism at home.
About psychology
In the context of unclear information about autism syndrome and different and even misleading perceptions like today, many parents when they find out that their child has autism, it is easy to fall into a psychological state. negative, worried:
“ When finding out that their child has autism, the family is very worried because they do not know how to take care of and educate their child because the child has other behaviors that are not like normal children ” . ( TLN parents , Yen Thanh district , Nghe An province ) .
“ When the family went to the doctor to find out that baby Q. had a mild autism spectrum disorder, the family was worried, really shocked and I cried a lot ” . ( PVS, Mother with autistic child, 9/12, sales , TP. Vinh, Nghe An province).
“ At first, knowing that our child had such a retardation, as parents, we were also very depressed, worried, and didn't know what to do. After that, the family found out information, and found a teacher for their child to study individually . Currently, in general, the family is more stable psychologically than when the child's condition was discovered ” . ( Parental group , Nghia Dan district, Nghe An province) .
Research results also show that parents have a lot of difficulty accepting their child has autism. The psychology of hiding a child with autism is quite common because they are afraid of being ridiculed for having an abnormal, "incompetent" child or being criticized for neglecting and not caring for their child, leading to such a condition. This makes the intervention and support for children not accurate and timely.
Difficulty due to lack of knowledge
It can be seen that parents of children with autism are at very different levels of knowledge in the process of treatment, intervention and education for children.
Regarding the causes of children with autism syndrome, there are also some misconceptions that the cause of children with autism is the lack of parental care "
because parents are busy at work " or "
because children play ". electronics, watching television for a long time ” .
Not all parents understand and decipher their child's behavior in order to have appropriate behavior or an effective educational plan. Children with autism, like other children, need to be understood, empathized, educated, guided in order to thrive, and need love and respect to confidently integrate into family and social environments. Therefore, parents need to have knowledge as well as love because "
Children with autism are more difficult to take care of than children with normal development because they are often sick, cry more, eat differently than normal children ".
According to the National Children's Hospital, the number of children who come to the clinic late and are diagnosed with autism at the National Children's Hospital is still very high (43.86% over 36 months old)
[10]. In the current context, because there is not much information about autism syndrome and services for autistic children, there are children with autism for a long time but are not detected and intervened early, leading to Many children, despite being grown up, cannot speak, are unable to communicate and integrate into the surrounding social environment, and have to depend on the care of their family members. This is not only a problem of each family but also a huge social problem, affecting social security.
Difficulties due to economic constraints
The number of children with autism is increasing and the impact of autism syndrome on the child, his family and the community is very serious. So far, there is no method to help children get rid of autism, but mainly to deal with the symptoms caused by autism. Therefore, the treatment and intervention measures for children with autism are complicated, prolonged and very expensive in financial terms.
“
The amount of money the family costs for the child's intervention ranges from 2 million to 3 million / month. The amount is not too big, but compared to the family's income and expenditure, it is also very difficult ” (Parents, Vinh City, Nghe An province).
“
The economic conditions of autistic children's families are still difficult, so it often affects the intervention process ”. ( Female, 1988, Intervention Teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An Province ).
Box 1. The case of Q.
My family has 3 children including Q with autism. Q.'s sister is a good student, has good health, and Q.'s younger sister is also quite smart and agile. Only baby Q is very sick and forgetful.
When the family went to the doctor to find out that baby Q. had mild autism spectrum disorder, the family was worried, really shocked and I cried a lot. After that, we found her for her children to study and treat regularly every day. After that, I was also introduced by a friend to study 1:1 intervention in Ms. N. She is still studying now. After 5 months we observe, see You have made remarkable progress. So, the family started to relieve pressure, everything gradually returned to normal .
The cost of living is also tight because of raising 3 children to go to school. Due to economic difficulties, the care and raising of children in the home face many limitations. In my opinion, the lack of caregivers because parents are busy working, lack of close supervision with Q. That's part of the reason why I'm in this situation.
( PVS , mother of a child with autism, December 9, sales , Vinh City, Nghe An province )
In the case of child Q, the psychology of parents when they learned that Q had mild autism spectrum disorder was very worried, confused, even "shocked". Then, parents also find special education methods and send their children to inclusive school. However, the family is currently facing many financial difficulties when sending their children to school. With a limited economic situation and low income, giving Q for long-term therapeutic intervention will be a real economic burden for his family.
In the study area, there are also children with autism who are children of households working in agriculture , economically poor, many families do not have enough money to pay fees in the process of treatment and intervention. card for children.
“My family is farming. In my family and most of the families with autistic children in the locality that I know of, most of the parents work in agriculture with economic difficulties and lack of money when they have to pay regular intervention fees for their children ” . (parents' group, Nghia Dan district, Nghe An province) .
Box 2.
The child, born in 2016, had normal development at birth, going through the right developmental stages of young children such as rolling, sitting, and crawling. However, when he was 2 years old, he still couldn't speak, so he sent him to the National Children's Hospital for examination. It was concluded that she had a sticky tongue, so her family allowed her to have surgery. By the time he was over 3 years old, he could also speak , but he showed signs of inappropriate behavior and behavior, unlike other children of the same age, so his family sent him to intervene in China . heart.
At the center, he was given intervention mainly in the form of 1:1, in addition, he also received group intervention. To intervene, the Center evaluates the child through criteria such as: language communication, cognition - adaptation; postural-motor (hyperactivity or inattention or behavior)
First about language - communication . When I first came to the Center, I hardly made eye contact, I indifferently avoided and did not care about looking at other people's faces. Every response when being called or touching my body, I don't have any response, I don't cooperate with the teacher, I like to talk or I sing certain tunes over and over. many times but do not understand its meaning. If I have a need for something, I will hold the hand to lead that person to get it, not say it in words.
In terms of cognitive adaptation . I don't understand other people's orders. I don't know how to answer questions like who? what? what?… even though I know those animals and things… I don't understand to take and imitate you. It can be said that all awareness of the close and familiar things around me is still absent.
About posture - movement . All his fine and gross motor movements have not yet followed certain principles. I do not know how to play simple games, symbolic toys such as wooden blocks, logos, etc., but I am interested in some moving toys such as rotating wheels, shiny objects and usually just play in a stereotyped, repetitive style i.
After a period of intervention at the Center from July 2020, he has had positive changes such as: he knows "yes" and responds when called. I took the initiative to follow her and everyone else , but still not actively speaking without purpose. I also know how to answer the question who? when pointed at each object such as aunt, father, mother, grandfather, grandmother, brother, sister, etc. Do you know how to answer questions like what? what child? what color? However, I have not cooperated actively yet. I have achieved relative motor results such as gross motor (knowing how to jump with two legs, catch the ball, throw the ball to others); I also know how to color on demand, but these movements need regular practice and practice.
The family learns information, how to take care of the child through the mass media, cooperates with the school and is guided by teachers in caring and educating the child. However, the cost of going to school is quite large, so it is very difficult.
(PVS, mother of autistic children at Trust Counseling and Early Intervention Center, Vinh City, Nghe An Province ) |
Discussion : I was diagnosed with autism by doctors at more than 36 months old. However, the signs of this syndrome have been present since more than 24 months, when D was not able to speak. I do not make eye contact, when called or touched my body, there is no response. D does not cooperate with people, says or sings certain tunes repeatedly but does not understand its meaning. All of D's fine and gross movements have not yet followed certain principles. Until the intervention of the Specialized Care Center, D had positive reactions. However, economic difficulties are a big problem for my family. The family mainly self-treated the child, without support from the State.
The case of D once again shows that it is very important to determine what type of disability autism spectrum disorder is in the Law on Persons with Disabilities, because it is related to the State's policy for autistic children in various fields . In addition, this is also a legal basis for autistic children and families with children with autism to fully enjoy the State's policies to ensure life integration .
In addition to the difficulties of lack of knowledge, economic constraints, pressure on caregivers, care time and lack of social support also lead to difficulties and challenges for families. in the care and education of children with autism. The people closest to the child with autism will be those who live in the family. In particular, parents have a particularly important role in the care and education of children . It is the parents who decide to choose a treatment facility, intervene for their child, plan an intervention for their child and even directly intervene. The way parents understand and interpret symptoms will greatly influence the treatment they choose or consider whether or not to have treatment.
However, in many families, parents cannot be with their children all day because they still have to work to earn money, and the main daily caregiver for children often does not have much time. Grandparents often have a weaker role because they don't live with them , or if they live with them, they are old, unable to care for them / do not have enough knowledge and skills to take care of children with autism.
2.1.3 Social barriers
The community's awareness about the field of children with autism is still limited, leading to the situation of autistic children being stigmatized and shunned.
“ Many autistic children have not been able to go to school because of discrimination, lack of sharing from parents and support from the school; Parents of children with autism have to cope with stress without support from the community or society (Nam, 1976, Head of Education and Training Department, Nghia Dan district, Nghe An) .
Stigma manifests in acts of refusal to contact, unfair treatment, and non-acceptance.
“The problem of stigma and discrimination when they know their child has autism is there. When knowing that my child has autism, other parents rarely let their children play with them because they are afraid that their children will be affected by their autism. Families are less allowed to go out to play than before." (Parental group discussion, Vinh city, Nghe An province) .
“
Parents of normal children do not allow their children to play with or interact with autistic children, have an incorrect view that autistic children are sick or mentally ill. They are afraid that children with autism will affect their children's perception, behavior and ability to learn and absorb ". (
TLN of teachers, Center for Counseling and Early Intervention of Trust, Vinh City, Nghe An Province )
For autistic children and their families being stigmatized may be in a more difficult situation, isolated and disadvantaged, creating separation, limiting contact and interaction with the community. It is also a difficult barrier to overcome for children's social integration process.
2.2 Policy and legal barriers in accessing education and health care of autistic children from the perspective of parents of autistic children and some stakeholders .
2.2.1 Perception of parents of children with autism and some stakeholders about policies for children with autism
To evaluate the policy for children with autism, the research team has studied the perception of autistic parents and teachers about the policy. A part of autistic children's families have a relative understanding of regulations and policies for autistic children. “
Children with autism have not been included in the Law on People with Disabilities, currently only policies are scattered in the Law on Children. Children, Law on Health Insurance ” (Parental group discussion, Vinh City, Nghe An).
“Currently, there are not a number of policies and laws specifically for autistic children in the locality, but only integrated with different types of disabilities ” ( Terrorist Center for Counseling and Early Intervention, Vinh City, Nghe An Province ).
In order to find out more specifically about parents' perceptions of policies for autistic children, the research team asked the group of parents to list policies, most of the comments only answered in general as follows:
"
Children with autism have the right to be cared for, educated and nurtured , have the right to go to school like other children , and have the same rights and protections as children with disabilities." ( Parents' group, Nghia Dan district, Nghe An province )
“
The State creates conditions for children with autism to integrate into society to go to school, learn and play at the right age. Children with autism have the right to go to school
like normal children . (Parents, Yen Thanh District, Nghe An Province)
“
If children with autism are assessed as disabled children, they will receive benefits of disabled children ”. ( Parental Center, Vinh City, Nghe An Province ) .
Many families are still confused in accessing policy documents, thus not grasping the information to benefit from the policy. “
I don't know, I haven't seen any policies that my child is entitled to ” (parents' group, Nghia Dan district, Nghe An province).
"
In my opinion, about assessing
the level of understanding of policies for children with autism, many people do not know or know very little, incompletely" . ( Female, 1976, Head of Justice Department , People 's Committee of Vinh City , Nghe An Province ) .
2.2.2 Assessment of parents of children with autism and some stakeholders on legal policies for children with autism
Regulation of children with autism and determining the degree of disability
In recent years, the improvement of legal documents has been increasingly focused by the State. However, the issue of autistic children has not been concretized in the document of the Law on People with Disabilities, the regulation that classifies autistic people as "other disabilities" is not strict, there is not enough legal basis for children to autistic people and their families benefit from state policies on social protection, health care, and education.
Autism is a broad spectrum and an extremely complex disability that is not limited to areas of influence. Autism can be all forms of disability in Article 3 of the Law on Persons with Disabilities. Many people with autism have difficulty in daily activities (such as buttoning clothes, bathing, etc.). Many people with autism never have language, and if they do, most of them are very limited; some people with autism have a sound processing disorder, even hearing a certain sound makes them feel uncomfortable, painful, and scared; many autistic people can't look at the other person when talking, because they can't process the information on the other person's face... Thus, classifying autism as a motor or hearing disability , vision defects are also inaccurate.
- Classifying autism as “neural and mental disabilities” is not consistent with the nature of autism spectrum disorders. In fact, there are many typical children with autism who have difficulty in social interaction, but do not have all the typical neurological signs or developmental delays. Therefore, if you put autism in one of these two groups, it will be very difficult for local councils to consider disability recognition as well as disability classification (severe, moderate, mild). In addition, this classification may lead to risks in terms of community integration, discrimination, prejudice and stigma for people with autism.
- Putting autism in the group of "intellectual retardation" is not appropriate because according to research by scientists, 75% of children with autism have developmental delays, 25% have normal intelligence and are from 3 to 5 years old. % is very smart(14). Autism is a disorder with varying degrees of severity from very mild to very severe, but most people with autism are still able to integrate into the community and can make varying degrees of contribution to society. festival.
- Putting autism in the category of “other disability” can lead to the arbitrary assumption that autism is a minor disability and that the actual incidence of children with autism would be in the plural. Thus, putting autism in any of the six types of disability under current regulations would not be entirely reasonable. Therefore, the division of autism into separate groups will help the community to be more aware of autism, aware of its severity and have clearer policies for this disability group. This view is completely consistent with the current trend of autism classification in developed countries.
Thus, even in the Law on Persons with Disabilities, which is considered the most progressive legal document today, children with autism have not been specifically mentioned, but mainly integrated with other disabled subjects. Although autism has been recognized as a disability, but what kind of disability it is, currently there is no clear legal document. In fact, the Law on Persons with Disabilities also has no reference to the concept of autism. According to the provisions of Clause 1, Article 3 of the Law on Persons with Disabilities, there are 6 groups of disabilities classified as: mobility disabilities; hearing and speaking disabilities; vision disability; neurological and mental disabilities; intellectual disability; other disabilities. Thus, according to the current Law on Persons with Disabilities, autism is not a separate disability, but will be attributed to one of the above six types of disability.
The results of the in-depth interview show the following:
“
In 2010, the National Assembly promulgated the Law on People with Disabilities, which stipulates the rights and obligations of people with disabilities, and the responsibilities of the State, family and society towards people with disabilities. At the National Assembly sessions, the delegates also had opinions on the rights of autistic children that should soon be included in the Law. However, up to now, there is no clear document on the rights of people with autism .” (Reporter
Nam, 1961, University of Economics, People's Committee of Nghia Dan district, Nghe An province ) .
According to Article 44 of the Law on Persons with Disabilities regarding social allowances and monthly care funding, beneficiaries of monthly social allowances include: 1) People with extremely severe disabilities (except for people with disabilities). helpless people raised in a social protection facility) and 2) People with severe disabilities. According to these regulations, only children with autism who are classified as severely disabled will their families be eligible to receive monthly foster care funding.
“
My family is a farming family. My child is considered mentally retarded - severe form and has a disability certificate, and receives a local subsidy” . (parents' group, Nghia Dan district, Nghe An province).
Thus, for cases where autistic children have not been classified or are classified as mildly disabled, they will not receive support funds. Therefore , the Law has not covered all groups of autistic children who are subject to social protection.
According to Circular No. 01/2019/TT-BLDTBXH dated January 2nd, 2019 of the Ministry of Labor, War Invalids and Social Affairs, providing for the determination of disability level by the Council for Determination of Disability, children Autism is defined as another type of disability when “there is a conclusion from a provincial-level health facility or higher about autism spectrum disorder”. Thus, although autism is recognized as a form of disability, but what kind of disability it is, there is currently no clear legal document. This leads to difficulties and obstacles in supporting children with autism. The results of this study clearly reflect the above problem.
Policies for children with autism and families with children with autism are only regulated and integrated in the
system of documents, general programs on social protection, system of programs and policies for children and people . With disabilities and children with disabilities in general , there is no separate policy, so it is difficult to implement support for autistic children in practice ” . (Male, Department of Education and Training, Yen Thanh district, Nghe An) .
“ Many autistic children grow up unable to take care of themselves but do not meet the criteria (according to the current Law) to enter foster care and social protection centers. (Nam, 1976, Head of Education and Training Department, Nghia Dan district, Nghe An) .
“In my opinion, there should be separate welfare policies for autistic children ; create conditions for children to study, support vocational training and create job opportunities in the future. (Female, 1990, University of Social Work, Teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An) .
The opinions of families with children with autism are similar
“The State needs to have appropriate policies on social allowance levels as well as policies on education and health care for autistic children and their families . (Female, 1992, parent of a child with autism, 9/12 education, Nghia Dan district ) .
“There are inadequacies in recording what type of disability children with autism have. The level of financial support as well as protection policies for children is still limited” ( TLN Teachers, Trust Counseling and Early Intervention Center, Vinh City, Nghe An Province )
Currently, in order to assess the degree of disability and issue a certificate of disability, the legal representative of a child with autism must submit an application for determination of disability level to the People's Committee of the commune or ward where he/she resides. The Disability Determination Committee will meet and review the child's disability assessment. Regarding the Council, Article 2, Circular 01/2019/TT- Ministry of Labour, Invalids and Social Affairs dated January 2, 2019 of the Ministry of Labour, Invalids and Social Affairs stipulates:
The Council to determine the degree of disability, established under the decision of the President of the People's Committee of the commune, ward or township, consists of the following members:
a) The President of the People's Committee of the commune is the Chairman of the Council;
b) Heads of commune health stations;
c) Commune-level civil servants in charge of labor, war invalids and social affairs;
d) The head or deputy head of the Vietnam Fatherland Front Committee, the Women's Union, the Youth Union, the commune-level Veterans' Association;
dd) The head of the commune-level organization of persons with disabilities of the commune where the organization of persons with disabilities is located.
With the above regulation on the Council to determine the degree of disability, it is extremely difficult to determine the types of autism and the level of autism due to the lack of specialists on this issue. This is clearly demonstrated through in-depth interviews as follows:
“ Inadequacies in the current disability classification have made autistic children and families with autistic children a lot of difficulties, especially in accessing health and education services... The books are incomplete and unclear, along with the lack of consensus on the direction of the sectors and levels and the limitations in awareness of local officials in the identification of disabilities for children automatically. When it comes to thinking that autism is a curable disease, not a disability, some localities have refused to make a document to recognize a disability for autistic children” (Nam, 1976, Head of Education Department). and DT, Nghia Dan district, Nghe An) .
“ The state needs to promulgate a law and have a document to determine the levels of autistic children , have a specialist doctor to accurately assess the condition and issue a certificate for the child. " (Female, 1992, parent of a child with autism, 9/12 education, Nghia Dan district, Nghe An ).
Disability certificate application file “
Must have an application from the family; Copies of medical documents proving disability: medical records, papers of examination, treatment, surgery or other relevant papers if any; A copy of the conclusion of the Medical Assessment Council on the ability to self-service, the degree of working capacity decline in the case of disabled people, which has been concluded by the Medical Assessment Council before the date of Decree No. 28 /2012/ND-CP dated April 10, 2012 of the Government detailing and guiding the implementation of a number of articles of the Law on People with Disabilities takes effect . ( Officer, Female, 1983, Teacher of Le Mao Primary School, Vinh City, Nghe An Province )
Research results show that many parents of autistic children have difficulties in applying for disability certification for their children, so their children are not entitled to support policies on education, health, and social protection. like other children with disabilities. That has made the inherent difficulties of autistic children and their families even more serious. Many families with children with autism have both physical and mental difficulties and need the support of the community . Therefore, there is a need for sanctions to increase access to education and health care for children with autism, and to help children and their families access specific resources from society.
2. 2 .3 Assessment of parents of children with autism and some stakeholders on policy implementation for children with autism
As analyzed above, at present, there is no separate legal document for autistic children, most policies for autistic children are incomplete and are currently only regulated and integrated in documents and programs. general on social protection, health insurance, Law on Children, Law on People with Disabilities.... so the implementation of the policy has certain shortcomings.
Support from educational institutions
Over the years, the protection and care of children in the study areas has been paid attention and focused with the participation of both the political system and the community. If in the past it was very difficult for young families to accept that their child has autism, in the past time, with the care of the whole society, parents and family members can Children with autism have become more aware of the need for early intervention for children to help them integrate and develop. Besides, from mobilizing local resources and doing well coordination with units and organizations, the health care for children in general, and for autistic children, children disability in particular is increasingly implemented more frequently and effectively, creating trust and consensus of the people. In the study areas, 100% of children have annual health check-ups and visits ; 1 00% of autistic children under 6 years old are issued with health insurance cards and are periodically visited and examined. Early intervention models for children with autism have been established and developed quite diversely. Currently, there are many treatment and intervention methods for children with autism, in which educational intervention is considered the most effective intervention direction. The model of early intervention at the center and at the inclusive preschool is popular .
“
Some families are also somewhat satisfied with the services they receive. Children who have been examined and treated at existing medical services, health care and rehabilitation facilities for children with autism are confident, have good coordination, and their conditions have many problems. positive. Intervention centers are now available but are still few, many families with children with autism do not know about these centers. However, in terms of effectiveness, these centers have partly helped children with autism reduce or recover if they receive early intervention. Early intervention and intervention in the "golden phase" of development, can help children with autism reduce disease or reduce risks, limitations in motor skills, self-care skills, cognitive skills , study, integrate into the community. But there are also difficulties like many families do not know about these centers, the centers are small, the funding is not supported ”. ( Female, 1983, Teacher at Le Mao Primary School , Vinh City, Nghe An Province ) .
Besides the advantages, due to the attention of leaders and local authorities, along with the trend of market economic development, there are now many private institutions to care and educate children independently. century. However, compared with the increasing number of children with autism, newly established facilities have not met the treatment requirements. Moreover, finding reputable centers capable of intensive intervention to help children with autism is not easy.
“
Criteria for quality accreditation of centers are nonexistent. Parents who are lucky to find a good center will benefit their children. Many cases are sent to the wrong place, after a period of time, they feel inadequate, the most disadvantaged is the child because this time has passed the golden stage of intervention ” (Female, PhD, Faculty of Special Education, University of Pedagogy. Hanoi) .
The ability to integrate into the community of children with autism is currently facing many difficulties and limitations due to the lack of specialized care facilities . Many kindergartens and primary schools refuse to accept children with autism, causing them to lose the opportunity to integrate.
In some respects, it can be seen that autistic children in urban areas have better access to health care and education facilities than children in rural areas due to the availability of service facilities. Based on observations from local practice and the results of in-depth interviews and group discussions, it shows that there are specialized education centers for autistic children in Vinh city - but they are not state-owned establishments, these are privately-established establishments. In addition, there is a certain difference in service quality as well as the qualifications of teachers and medical staff.
“Vinh city has specialized educational institutions for autistic children such as Bien Duong Center for Support for Inclusive Education Development, and Center for Counseling and Early Intervention for Children with Disabilities Belief... These centers provide education specifically for children with autism, here they can intervene and learn to gradually integrate into society ” (Parents group discussion, Vinh City, Nghe An) .
Currently , the Center counseling and early intervention for children with disabilities Belief has 8 intervention teachers. On average, each teacher at the intervention center 5 shifts/day. Teachers have graduate degrees in specialties such as social work, psychology, special education, early childhood teachers. Those are areas of expertise, suitable for becoming an intervention teacher for children with autism as well as other children with special needs. In the past 5 years, the number of teachers has changed in both quality and quantity. Teachers have access to a variety of teaching and learning methods through advanced training sessions and media through books, newspapers, the internet, etc. and through surveys/projects of organizations . According to the assessment, the expertise of teachers at the center is increasingly improved, meeting the needs of families with children with special needs, especially children with autism.
The interview results show the advantages and disadvantages of the intervention support activities of teachers at the intervention center as follows:
“
The work done in a day with the children of the teachers at the center is: Communication training for children including skills: concentration skills, imitation skills, play skills, eye contact , gestures and social skills; Performing therapeutic activities: fine motor skills, daily living skills, self-service skills, eating, bathing, dressing, wearing slippers, going to the toilet, hand skills: holding, grip, cut, paste; The methods of play therapy are individual therapy (1-1), small group and large group play, and sensory conditioning therapy. At the same time, teachers also spend about 10-15 minutes a day to guide parents to intervene at home for children. In addition, I see some advantages when implementing interventions with children such as the cooperation between parents and teachers in the intervention and education of children. Quite a few parents have accepted and know their child's level to intervene. However, there are many difficulties. The work of teaching children with autism is quite complicated and there is no specific lesson plan or method, but most of it depends on the situation of each child to have their own teaching and treatment methods. Children with autism have poor eye contact, leading to less effective interactions between interventions. While many parents accept the reality of their child's autism, a few do not accept and cooperate to intervene. This situation makes it difficult to communicate and talk between teachers and parents (
Female, 1995, Intervention Teacher, Trust Center for Early Counseling and Intervention for Children with Disabilities, Vinh City, Nghe An Province, Vietnam). ) .
With the remaining two areas (Nghia Dan district and Yen Thanh district) there are no large schools and centers, most of them only have small classes and groups. These grades are generally of lower quality than the major centers in urban areas.
“
The district does not have a specialized support center for autistic children, only a social protection center for people with disabilities” (man , officer of the Department of Labour, Invalids and Social Affairs, Yen Thanh district, Nghe An).
“
There are no care and intervention facilities for autistic children in the locality. Families with autistic children are mainly examined and treated at the National Children's Hospital and cared for children at home according to the family's ability. Factors about the support of family, relatives, social organizations and the community… greatly influence and determine the recovery and development of children with autism .” ( Nam, 1961, University of Economics, People's Committee of Nghia Dan district, Nghe An province ) .
Thus, for autistic children in remote districts and communes, it is difficult to visit hospitals and intervention centers due to their remote locations, expensive travel, and loss of life. a lot of time and expense.
Therefore, many families wish to have treatment and intervention facilities for their children
“
The family is feeling very worried, because the child's ability to integrate is very slow. The family just wants the child to have a place to study, play and learn a job in the future ”. (
Parental group discussion, Nghia Dan district, Nghe An province ).
All of the above reasons have led to a consequence that many autistic children are not able to attend classes and are not guaranteed children's basic rights. At higher levels of education, the chances of children with autism to go to school are lower and the rate of school attendance for children with autism is much lower than that of children in general.
Besides physical facilities, one of the important criteria of specialized education centers for children with autism is the teaching staff.
The head doctor of psychology department, Children's Hospital 1 assesses the quality of trained students as follows: “
Training of human resources is still thin, universities have training in psychology and medicine, but they are not qualified. quality assurance. The enrolled students have no place to practice, no actual collision conditions, so the quality is not high. "
“ The number
of autistic children going to school is not much, especially in rural, remote and isolated areas. Along with that, the staff of managers and teachers to teach children with autism is still seriously lacking, can it only be met in places where there are programs and projects ; not to mention that teachers also need to be trained in special education so that they can take care, educate and help children to participate in society early ” (Female, 1983, Teacher of Le Mao Primary School , Vinh City, Vietnam). Nghe An ) .
“
In my opinion, the necessary skills of teachers in intervening with children with autism must be heart, love and perseverance with children, in addition to expertise and teaching methods. Teachers must regularly evaluate and have a teaching plan suitable for each child, combine and discuss with families and relatives about the child's status in class - at home. In addition, it takes effort and professional learning ” . (Female, 1988, Intervention Teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An) .
“
Documents on children with autism is limited, training for teachers is still limited ”. ( Female, 1988, Intervention Teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An Province ).
Through the survey results, the group of teachers at the Center for Counseling and Early Intervention for Children with Disabilities Belief , health care for children with autism at medical facilities is now performed equally as children with disabilities. normal. After being intervened, children with autism also make certain progress: there are a few children after intervention who can participate in the integration environment with their friends at school. However, besides that, there are many cases of children with severe level, poor behavior handling ability, the progress is still slow. The percentage of children with autism who can recover to attend primary school is currently very low. Some children participating in inclusive learning need a teacher to support them.
“
Children with autism who are intervened have certain changes. Children with good intervention will have the opportunity to integrate into the environment like their peers. Some children have changes in cognitive behavior, communication. However, for children with severe autism , the change was not significant. For parents who let their children intervene, they always believe in the ability and methods of the teachers .
" (Female, 1990, University of Social Work, Teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An).
It can be seen that, for children who go to centers to study and practice , their awareness will improve, actively communicate with people and have close contact with friends. Early detection and intervention for children with autism before the age of 6 at specialized facilities can improve many outcomes in terms of cognition, language, and behavior , helping children to go to school early and integrate into society . Therefore, it is necessary to establish specialized educational institutions for children with autism, and at the same time, it is necessary to have specially trained teachers . about this field .
Support from medical facilities
In the medical field, the health sector has also examined, classified and assessed the level of children with autism. Children with a diagnosis of autism spectrum disorder from a provincial-level medical facility or higher will be classified into another disability group and receive appropriate medical care and support regimes.
According to the provisions of Article 12 of Law No. 46/2014/QH13 dated June 13, 2014 on amendments and supplements to a number of articles of the Law on Health Insurance ,
children under 6 years old, people with disabilities, beneficiaries of social protection, poor households ... is one of the groups of subjects who are granted free health insurance cards, funded by the state budget (point e, clause 3, Article 12). And according to the provisions at Point b, Clause 1, Article 17 of this Law, the commune-level People's Committees shall make a list of participants of the above subjects and send them to the social insurance agency for issuance of health insurance cards.
For autistic children belonging to near-poor households, the state will support the payment rate (point a, clause 4, Article 12).
Thus, for autistic children over 6 years old who are not in poor households and do not have disability records, they will not be granted free health insurance cards.
“ Children with autism under 6 years old will be provided with health insurance like normal children. For children over 6 years old, if parents make a disability profile for their child , they will be granted a free health insurance card . (Female, 1995, intervention teacher, Center for Counseling and Early Intervention for Children with Disabilities Trust, Vinh City, Nghe An) .
“
My grandchild has been assessed as a child with a disability and has received the disability allowance. Currently, the assessment to confirm the identification of children with disabilities is easier and more convenient than in the past. His evaluation record is from the National Children's Hospital, which assesses him to be autistic and mentally retarded. ” ( Parent group discussion , Vinh City , Nghe An province ) .
In many areas, there are no specialized doctors, so parents with sick children are sent to big cities for examination, leading to overcrowded upper-level hospitals. According to reports, each year, the National Children's Hospital receives about 6000 children suspected of having autism for examination and treatment.
In addition, the research results also show that at the present time in the study area "
Children with autism do not receive regular medical examination and treatment " (Teacher group discussion, Center for early intervention and counseling for children with disabilities, Moi Moi). information, Vinh City, Nghe An) , “
some autistic children have not received any support policy ” (
Parental group discussion, Vinh City, Nghe An ) . This shows a gap in intervention due to the lack of separate policies for children with autism.
In addition, there are a number of limitations and barriers related to medical facilities and staff, such as:
Barriers to physical facilities in healthcare specifically for people/children with autism: Rehabilitation network system is thin, lack of staff; The organizational model of rehabilitation facilities is still limited. Health care services, especially in rural and mountainous areas, are still limited, which greatly affects the prevention, detection, early intervention and rehabilitation of children with disabilities. Most commune-level health facilities lack people with expertise and experience in medical examination and treatment for children with disabilities. Commune health stations need to make records to manage the subjects' health, monitor the health status of children with autism in accordance with the provisions of the Law on People with Disabilities.
Barriers to lack of opportunity and access to health and rehabilitation care: Health facilities are responsible for ensuring the accessibility of persons with disabilities to health care and rehabilitation services. . Basic resources for people with disabilities should be covered under the state health insurance scheme.
Communication activities on autism syndrome and policies on children with autism
Communication plays a very important role in bringing correct awareness to society about autism syndrome, helping families to recognize and implement early and right care and intervention. However, the research results show that communication activities about autism syndrome and policies for autistic children in the locality are still limited and mainly because families learn on their own in the media. mass.
“
In fact, communication about children with autism is still very limited, so people are not fully aware of this issue. In my opinion, the need to propagate this content is very great, especially for families with children with autism so that they can recognize and have the best treatment for their children. Currently, there is no separate document to propagate autism; mainly families with autistic children find out on the mass media ”.
( Nam, 1961, University of Economics, People's Committee of Nghia Dan district, Nghe An province) .
“ Recently
, people's perception is gradually changing, but it is still very vague. Many people are indifferent, do not care about autism, do not know how to prevent and detect early for their children. In the locality, very few people know about policies for children with autism because there are not many communication programs on this issue ”. (Female, 1976, Head of Justice Department , Vinh City , Nghe An )
The results of the group discussion of the teachers of the Center for Counseling and Early Intervention of Belief also showed similar assessments
“The reality of autism communication activities in the locality is still limited. In the past 5 years, although more people know and pay attention than before, the level of understanding about autism is still very low. In the locality, almost teachers are not propagated on this issue. They are mainly informed of information on policies and laws for children with autism through the internet, books and newspapers . " ( Teacher group discussion, Belief Counseling and Early Intervention Center, Vinh City, Nghe An Province ) .
Can see, The source of information and knowledge about children with autism is mainly from the mass media. Thus, one of the important criteria in the implementation of policies for autistic children is communication activities, which have not been conducted methodically and regularly in the research areas, lacking orientation. Inadequate content and communication methods. Information is still mainly found by families of young children with autism through mass media, the internet, television, newspapers, and radio. Therefore, all opinions want the issue of autistic children to be widely communicated locally with specific and detailed content.
“
In the coming time, it is very important to widely disseminate information about autism in the community, towards solutions for prevention and early intervention for children with autism. The content to be propagated is how to recognize and detect autistic children, assess children's awareness and skills, and assess their ability to integrate into the community. Localities need to step up the enrichment of media content and strengthen forms of communication .” (Female, 1976, Head of Justice Department, Vinh City, Nghe An) .
“
It is necessary to propagate such contents as: signs to recognize children with autism, methods of child care , treatment for each level of disease; introduce effective medical examination and treatment facilities… so that parents can make appropriate choices for their children . " (Parental group discussion, Yen Thanh district, Nghe An) .
Director of the Center for Special Education Research - Vietnam Academy of Educational Sciences said that currently, people with specialized knowledge about autism are not much, leading to the communication to give society an accurate and comprehensive view. A diagnosis of autism has also not been performed.
It can be seen that, in addition to perfecting the legal policy on children with autism, communication activities also need to be enhanced along with the investment in communication content and methods for the policy to be put into practice. help parents of children with autism get useful support in child care and education.
Geographical barriers:
Because the families are in remote areas, the examination and treatment lack information and specialized treatment and intervention facilities. Many young families delay medical examination, give up treatment and rehabilitation for their disabled children because they have to travel too far to examine and treat their children. The travel far, outside the district, outside the province, lost a labor force of the family. The choice of having to feed the whole family is placed above that of examining and treating children. This is the reason why children miss the "golden treatment" opportunity, causing many children not to be examined, leading to an increasingly serious illness. Thus, it can be seen that, in addition to the family's awareness, the lack of health care and rehabilitation services for many children in mountainous and remote areas is the core cause of the disadvantage of children. children in medical care. Also, in remote areas, there is a lack of opportunities to access information, services, programs, and special policies for children with disabilities that many young parents don't know about, or have difficulty in traveling. lose opportunities for medical examination and treatment for children. In addition, in remote and remote areas, medical facilities (medical stations) will not have doctors specializing in mental health to examine and treat children.
Economic barriers:
Many parents in difficult families are the main breadwinner of the family. Therefore, it is not possible to accompany the child for treatment. Some families in the area, or with economic difficulties, cannot afford to pay for their children's regular intervention education. This leads to children not receiving regular intervention or being left unfinished, missing the "golden period" in treatment and rehabilitation for children. This problem is the root cause of many autistic children who are now adults (16-18 years old) but their condition is extremely severe. Due to economic difficulties, children with autism spectrum disorder may become a tool to earn a living for the family, children will be left behind when they have accidents, injuries, illnesses or problems affecting their physical and mental health. God.
Barriers of stigma and discrimination:
Research results also show that current policies to support children with autism are following a need-based approach. This approach has the strength of providing autistic children and their families with the necessary support to promote children's access to and use of basic services such as health care. But this approach contains a capacity bias and tends to follow the medical model. Furthermore, stigma leads to impeding inclusive education for children with autism in regular schools (eg: parents of other children do not want their children to study with children with autism spectrum disorder, Ms. Teachers have difficulty interacting with children, children are naughty, so they cannot study together with other students…). Teachers who teach children with autism must accept losses in the assessment of completing school year tasks, because for children with autism spectrum disorder, it must be accompanied by individual education, inclusive education and cultural education, so It is very necessary for children with mild and moderate autism spectrum disorders to study together with normal children, to gradually learn each activity of children of the same age .
Barriers related to new policies, implementation mechanisms and application procedures
Barriers to the legal document system, the policy system: The policy is mainly aimed at the group of people with disabilities in general. Therefore, the policy system for the specific group of children with autism and children with special needs is not much. This affects the legal framework and legal basis for implementation, allowing inclusive education activities specifically for that group of children with autism.
Barriers in policy implementation: In addition to the legal basis, the implementation of support and intervention for children with autism has many limitations, such as requesting approval for child support, sending children to special classes...; Review and assess the situation of children with autism focusing on medical care needs to have data for budget allocation and propose to the authorities.
Barriers in complicated application procedures: Some households have conditions for their children to go for rehabilitation at a number of facilities of their choice, the requirements for application procedures are not met (the basis requires households to receive rehabilitation services). from Hanoi), also lost children's treatment opportunities.
CONCLUSION, RECOMMENDATION
- Conclusion
Through the results of research in the city. Vinh and Nghia Dan district, Yen Thanh district, Nghe An province show that the difficulties faced by autistic children and their families are huge. Through a lot of medical research, autism is a form of developmental disability so far there is no specific medicine or method that has been evaluated as being able to completely cure it. However, there are a number of treatments and interventions that can help people with autism be independent, integrate into the community, be able to study and work, and improve their quality of life. Practice shows that the access to education and health of autistic children in the study area faces many obstacles because there is not enough legal basis for implementation. People with disabilities (2010) and Circular 01/2019/TT- MOLISA are not suitable for practice, so there is a lack of specific guidelines for implementing activities to support children with autism. In addition, barriers also arise from families of children with autism (due to limited parental awareness, poor family economic conditions, etc.). In addition, the stigma of the community is also a cause for the social integration gap of children with autism.
In the process of implementing support for children with autism, at present, communication activities are still limited. People in general are not fully aware of autistic children, so the need to propagate this content is great, especially for families with autistic children so that they can recognize and guide them. Give your child the best treatment. Currently, there is no separate document to propagate autism; Families with autistic children learn mainly on the mass media. Some people are aware of policies for children with autism, but the level of understanding is still incomplete.
Social services are considered as services that meet the needs of communities and individuals for social development. For a group of children with autism, specialized social services are essential to help children get intervention, care and support to integrate into life. There is a lack of special education institutions with suitable facilities, a shortage of teachers with professional qualifications in special education, leading to support activities for children with autism and their families. The family faced many difficulties and challenges.
- Recommendations
From the actual research, we make the following recommendations:
- General recommendations with policies
Policy recommendations
- In order to overcome the inadequacies in practical application of policies for autistic children, it is necessary to continue to improve the legal policy on children with autism, not only specifying other forms of disability as currently under the Law on People with Disabilities. .
- Provide a separate certification process for children with autism, and at the same time, the Council to determine the level of autism requires a psychiatrist qualified to examine autism.
Recommendations on policy implementation
- Promote communication and provide knowledge and skills on supporting children with autism to access child protection, care and education services for their parents and families. Research and develop appropriate communication products on the rights of autistic children, protection and care services for autistic children, etc. to be released in the community in order to change the social perception of autistic children.
- Capacity building for staff and teachers in the system of providing care and education services for autistic children. Develop programs and organize training for security guards and staff providing protection and care services for autistic children.
- Accelerate the determination of disability levels and issue disability certificates for autistic children to ensure that autistic children benefit from the policy.
- Mobilizing resources from the community, individuals and businesses to support autistic children in poor households and households with special difficulties.
- To pilot a number of specialized service models to support autistic children in the community, ensuring appropriate and safe facilities and equipment for children; a team of qualified and enthusiastic teachers, creating a friendly and positive learning environment, helping children to reach their full potential and making efforts to soon integrate into society.
2.2. Recommendations to stakeholders
2.2.1. For the State, the National Assembly, the Government
For the State
- The State supplements and promulgates appropriate policies and regimes to support families of children with autism, especially poor and near-poor families so that children can go to special schools and integrate into the community.
- Conduct a census of data on autistic people and children with autism, on that basis, have appropriate and effective policies and support solutions.
For the National Assembly to consider early inclusion in the program of building a law project so that the interests of autistic children are legalized and most guaranteed. In the world, autism has been considered a disability, but in Vietnam there is currently no law for autistic people. It is very important to define what type of disability autism is in the Disability Law. Because it is related to the State's policy for autistic people in the future in the fields of scientific research, health care, education, etc. In addition, this is also the legal basis for autistic people and their families. If there are people with autism to fully enjoy the State's support policies on health, education, social protection, etc. To create favorable conditions for autistic children to integrate into society, the child's rights must first be established. autistic children into laws and on that basis, propose policies as well as special supports to help this disadvantaged group have the right to access as stipulated in the constitution.
For the Government, it is necessary to have a national program on children with autism, then there will be a full approach and related measures between ministries and departments to be able to offer a comprehensive solution. In addition, it is necessary to accelerate the research and development of specific policies for autistic children and support families with children with autism. In particular, it is necessary to propose adjustments to policies that are no longer appropriate, such as adjustment of social allowance levels, care support levels, policies to support education, medical support, etc. for children with autism. children and their families. In some countries, including Malaysia, the issue of people with autism has become a social issue and has received the attention of ministries and agencies. The government has specific support programs for children with autism ranging from education, health care and career guidance, to create jobs for people with autism, to reduce economic burdens for families with disabilities. autistic children.
2.2.2. Judicial
Recommendations to the Ministry of Justice in the implementation and implementation of benefits for children with autism and their families
- Promote the implementation of disability identification and disability levels for children with autism.
- Empowering localities, implementing policies specifically for children with autism such as confirming disability, disability level, providing support funding, and benefiting from social protection regimes.
- It is necessary to issue reasonable sanctions for violations in discrimination and discrimination against autistic children and their families. In some cases such as refusing to allow autistic children to integrate into school, alienating or condemning families with autistic children, disparaging behavior, criticizing autistic children, etc., sanctions should be imposed. timely.
- Strengthen the implementation of the rights of children/autistic people regarding the right to vocational training and job creation, the right to health care and rehabilitation, the right to integrate into the community.
- Children/autistic children's organizations should be appropriately trained to oversee the protection and promotion of the rights of children/autistic people, in the implementation of the Convention and the law. Mechanisms must be established to ensure the effective participation of disadvantaged groups in the decision-making process, ensuring that their diverse needs are included in the law.
- Supplementing regulations on the establishment and operation of early intervention centers and support centers for children with autism and their families. Put in place the appropriate regulations to the local
- Local requirements are to strengthen inclusive education for autistic children, helping autistic children to study in a place where they live with their family, without separation of the living environment. Create conditions for preschools to be responsible for accepting all local children, regardless of autistic children or normal children.
- Assign tasks to social workers or social workers in the localities, the task is to support children in the locality, create the best inclusive living and learning environment for preschool children with autism. preschool, creating favorable conditions for autistic children to participate in learning with normal children in preschool schools and classes.
Recommendations to the Ministry of Justice to promote the effectiveness of propaganda activities to raise awareness about the legal system and policies for autistic children and their families
- Plan and implement national action programs to raise awareness about children with autism and their families. The goal is to promote awareness and support for children with autism to enjoy their right and full rights.
- Empower the locality, promote strong propaganda activities. If a family has a child with autism, it is necessary to send a social worker or social worker to provide timely and synchronous support. Officials or employees need to provide information and knowledge about support policies, social protection for children, how to make records and benefits for children.
- Strengthen propaganda and law dissemination not only for autistic children/autistic people but also need to propagate autistic children and policies for the community to understand.
In summary, the Ministry of Justice needs to increase awareness and issue policies suitable for inclusive education for children with autism in the coming time. Due to some limitations in implementation and propaganda activities, many people are still not fully aware and have stigma and discrimination against autistic children and their families. They face many difficulties in integrating into the community. Inclusive education activities for children with autism are quite necessary and need to be quickly replicated in many localities throughout the country. Only when they are sent to school to learn and integrate, will children with autism have the opportunity to receive support and reduce their future burdens. For children with severe symptoms, they need to be regularly sent to intervention schools, and are also beneficiaries of policies. The promotion of preferential policies and social protection for this disadvantaged group should be strengthened, in order to shape the future for children, and reduce the burden on the family and society.
2.2.3. Health
Therefore, the CSWD Center research team has some recommendations to contribute to support and promote policies on health, care, palliation and rehabilitation for autistic children and their families. . As follows:
- Policy to ensure the right to health care and rehabilitation for children with autism
- The Ministry of Health needs to coordinate with the Ministry of Labour, Invalids and Social Affairs to issue standards for disability assessment and disability levels for autistic children.
- Strengthen policies to support autistic children to receive health care at health facilities throughout the country. It is necessary to improve the capacity of local health care in detecting, intervening and treating children with autism when having health problems, such as requesting local examination and treatment. Each health station should have qualified medical staff, capable of long-term and continuous intervention, treatment and rehabilitation for children with severe, moderate and mild autism.
- Strengthen communication, law dissemination, and health education communication not only for the group of children with disabilities/people with disabilities but also need to communicate about autistic children. The propaganda content needs to include more information about early detection signs, manifestations of children with autism and accompanying diseases, child care at home, at educational institutions so that the family can grasp and take the child. Go to medical facilities as soon as possible to prevent accidents and injuries for children.
- Supporting local children, creating the best inclusive learning and living environment for children with mild and moderate autism at preschool, creating favorable conditions for autistic children to participate in school with them. normal children in schools, kindergartens, primary schools, middle schools and high schools. Bringing care, support and integration criteria into school health criteria in school health activities at educational institutions.
- Local requirements are required to strengthen inclusive education for children with autism, to help children with mild and moderate autism to study in a place where the child lives with their family, without separation of the living environment. Create conditions for preschools to be responsible for accepting all children in the locality, regardless of autistic children or normal children. Strengthen the health system set up with local inclusive education institutions, to detect children and provide regular health care for children.
- Group of policies to supplement the system of medical staff and doctors specializing in the field
- Innovating the training program for pediatricians on autism. Teachers who teach future doctors must have extensive specialized training in autism.
- It is necessary to organize examination and treatment for children with autism, early detection and timely intervention, to help children integrate into the community,
- Actively coordinate with the education sector, psychologists and experts to have effective treatment solutions for children's autism syndrome .
- Policy group on propaganda activities
- Contents of propaganda include information on signs of children with autism, ways of health care, and rehabilitation measures for children; Raise awareness of the rights to health care and rehabilitation.
- Propaganda objects are relatives and young families, groups of local cadres or social workers, educational institutions, medical facilities and people in the community.
- Communication methods need to be diversified and appropriate such as (1) organizing seminars, seminars, training sessions on the issue of children with autism (such as: the right to health care and rehabilitation, facilities, etc.) early intervention, measures to support health care, education life skills for children...); (2) Information on mass media (such as TV, radio, internet...); (3) Designing billboards, flyers, posters to convey content; (4) Local health workers need to promptly detect and visit families to provide advice and information on health and rehabilitation as well as plans for teaching, medical examination and treatment for children.
- Objective: To create a partnership between family - school/intervention center - health facility - community, to jointly coordinate inclusive education and health care for autistic children.
2.2.3. Education industry
Therefore, the CSWD Center team has some recommendations to the Ministry of Education and Training, to promote new policy, for stakeholders to help children with autism today and people with autism in the future. future.
- Policy group to promote scientific research in the field of children with autism
- There is a policy to support funding for research activities, human resource training and working with children with autism by including relevant subject chapters in the curriculum in universities and colleges. paying special attention to the curricula for pedagogy, health...
- Supplementing national, provincial/city, grassroots-level topics at universities, colleges and academies in the field of children with autism to promote solutions for children and families, and ways to orientate them. profession and promulgate appropriate policies to prevent risks for children and families with children with autism.
- Policy group to set up more special schools for autistic children and children with special needs
- It is necessary to approve and establish special schools for children with severe autism or special intervention centers for children with autism, autism and special needs, so that they have the right to go to school, taught basic skills.
- Propose regulations and regulations to establish more classes for children with special needs, and support localities in establishing such facilities. Especially in remote and poor areas, it is necessary to establish more special classes to support children with special needs in those areas.
- Support centers in organizing vocational training and creating suitable jobs for children with special needs. Through special classes, it is necessary to add appropriate vocational training goals for those children, to guide their future careers.
- Policy group to improve expertise in the education of children with special needs
- Pay attention to building schools and classes exclusively for autistic children because of the specific nature of the child, unable to study together with other normal children until a certain level of progress has been achieved.
- Support people-founded and private schools specializing in teaching autistic children in terms of facilities and equipment, provide specialized teachers with autism, and have policies and regimes for these teachers like current public schools. now.
- Train a team of teachers with deep expertise in autism to meet the requirements of the increasing number of children with autism. The manifestations of autism disorder are relatively clear during the time children go to preschool. Therefore, one of the pedagogical competencies of preschool teachers that need to be equipped is to recognize the characteristics and manifestations of children with autism to help families get the earliest interventions for their children.
- Coordinate with international organizations, non-governmental organizations, centers and schools for autistic children abroad to study tours, or invite autism experts to Vietnam directly. exchange experiences.
- Policy group for localities
- Support local children, create the best inclusive learning and living environment for preschool children with autism, create favorable conditions for children with mild and moderate autism to attend school with normal children. in schools and kindergartens.
- Local requirements are to strengthen inclusive education for autistic children, helping autistic children to study in a place where they live with their family, without separation of the living environment. Create conditions for preschools to be responsible for accepting all children in the locality, regardless of autistic children or normal children.
- For many localities in remote areas, the geographical location is not favorable, there are hardly many schools or intervention centers for children. Therefore, the Ministry of Education and Training should cooperate with localities to establish more specialized schools for children.
- Group of policies for teachers teaching preschools, primary schools, and junior high schools
- Strengthening policies on remuneration, allowances and financial support for teachers who teach classes with autistic children attending preschools, primary schools, and junior high schools.
- Training, improving knowledge on inclusive education and changing awareness to effectively promote preschool, elementary, middle and high school teachers.
- Group of policies for teachers who directly intervene at centers
- Remuneration, remuneration and allowances are commensurate and appropriate.
- Organize seminars, workshops, capacity building training, knowledge exchange, exchange of experiences between teachers, and intervention centers.
- Propaganda policy group to raise awareness and avoid social stigma towards autistic children and families with autistic children
- Strengthen propaganda and law dissemination not only for autistic children/autistic people and their families, but also need to propagate the issue of autistic children, their understanding and call for the community to join hands to help. surname.
- Promote the implementation of disability certification for children with autism so that more children with autism enjoy their rights.
- Create a partnership between family - school/intervention center - community, to coordinate inclusive education for children with autism.
- There are reasonable sanctions for violations of discrimination against children with autism such as not allowing children to participate in integration classes, alienating, discriminating against children and their families, etc.
- Through propaganda, the locality can call for help with resources for autistic children and their families, such as medical examination and treatment costs, intervention costs, inclusive learning costs, etc. to reduce the burden. for family.
2.2.4. Department of Labor, War Invalids and Social Affairs
- Policy group aimed at stakeholders
- Advising the State on promulgating guidelines, policies and laws for autistic children. Coordinating with the health and education sector in formulating policies for autistic children, supporting parents of children with autism, and organizing vocational education for autistic children.
- Support the construction of centers, social facilities, social services to support the care of children with autism .
For mass media agencies
- Extensive propaganda to raise community awareness about autism syndrome and combat the community's stigma against children.
For local government
- People's Committees of provinces and cities need to invest in building more schools and centers for education and care for autistic children, helping autistic children to fully enjoy children's rights.
- Ensure full implementation of policies for children with autism.
- Guide parents of children with autism to children's hospitals, pediatric psychiatric centers, psychologists, pedagogical schools, special education schools... for early diagnosis and treatment.
- Group of policies promoting the rights of people with disabilities, specifically the rights of children/autistic people
- The Ministry of Labour, Invalids and Social Affairs should coordinate with the Ministry of Health to issue standards for assessing the level of disability for autistic children.
- The Ministry of Labour, Invalids and Social Affairs, in collaboration with stakeholders, should strengthen policies on inclusive education and health care specifically for autistic children and their families.
- Implement the rights of people with disabilities, including the rights of children with autism on the right to vocational training and job creation, the right to inclusive education, the right to health care and rehabilitation.
- Issue standards to establish more specialized intervention centers for autistic children, especially in remote areas where transport and communication systems are still limited.
- Coordinating with stakeholders to determine appropriate sanctions for violations in the period, discrimination against children and families with autistic children (such as alienation, discrimination against children, not allowing children to participate in child abuse). participating in an inclusive class, disparaging children and young families...)
- Support local children, create the best inclusive learning and living environment for preschool children with autism, create favorable conditions for children with mild and moderate autism to attend school with normal children. in schools and kindergartens.
- Local requirements are to strengthen inclusive education for autistic children, helping autistic children to study in a place where they live with their family, without separation of the living environment. Create conditions for preschools to be responsible for accepting all children in the locality, regardless of autistic children or normal children.
- Supplement vocational training and job orientation for the future of children with autism. Children who are able to perform some simple activities and tasks such as splitting toothpicks, cutting paper, etc. need to be taught and trained more.
- Strengthen local monitoring activities in the implementation of the rights of people with disabilities and autistic people. Detect and handle violations in a timely manner.
- Continuing to organize annual activities such as the Full Moon Festival, Mid-Autumn Festival, Tet gifts, June 1, Children's Day... in the locality, in order to partially support the children, both physically and mentally. separate and family.
- Group of remuneration policies for teachers teaching preschools, primary schools, and junior high schools
- Strengthening policies on remuneration, allowances and financial support for teachers who teach inclusion for autistic children at preschools, primary schools, and junior high schools.
- Training, improving knowledge and changing awareness about autistic children, recognizing signs and taking care of autistic children's health for teachers of preschool, primary school and junior high school.
- Group of remuneration policies for teachers who directly intervene in centers and groups of social workers or social workers in the locality
- Remuneration, remuneration and allowances are commensurate and appropriate.
- Organize seminars, workshops, capacity building training, knowledge exchange, exchange of experiences between teachers, and intervention centers.
- Organizing seminars, workshops, training on knowledge and capacity to support local social workers or social workers
- Policy group to promote propaganda activities and raise public awareness
- Promote the implementation of disability identification and disability levels for children with autism.
- Create a partnership between family - school/intervention center - health facility - community, to jointly coordinate inclusive education and health care for children with autism.
- Strengthen communication, raise awareness about early recognition signs, accompanying health problems and pathologies, ways of educating and teaching children, methods of rehabilitation for children with autism... in order to raise awareness. families have more awareness and appropriate response if there is a child with autism.
- Strengthen propaganda and law dissemination not only for the group of children with disabilities/disabled people but also need to propagate about autistic children. In addition, propaganda activities are also directed to people, educational institutions, medical facilities, and families to raise awareness and understanding about children with autism, early intervention methods and rehabilitation. .. Propaganda activities need to be diversified, combined with effective promotion such as through mass media, television, radio, internet, local radio speakers, seminars, seminars, training sessions. train.
- Combine communication activities about children with autism with communication strategies about people with disabilities in general throughout the country. Events and activities about people with autism and people with disabilities need to be regularly monitored by the media, published news articles, contributing to raising community awareness, propagandizing policies and the Law on Disabilities (with children with autism) in the mass media.
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