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| REVIEW ARTICLE |
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| Year : 2017 | Volume
: 1
| Issue : 1 | Page : 11-16 |
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Specific learning disability in Maharashtra: Current scenario and road ahead
Henal R Shah1, Surbhi C Trivedi2
1 Department of Psychiatry, Topiwala National Medical College and B. Y. L. Nair Charitable Hospital, Mumbai, Maharashtra, India
2 Consultant Psychiatrist, Dr. LH Hiranandani Hospital, Mumbai, Maharashtra, India
| Date of Web Publication | 19-Jun-2017 |
Correspondence Address:
Henal R Shah
Department of Psychiatry, Topiwala National Medical College and B. Y. L. Nair Charitable Hospital, Mumbai - 400 008, Maharashtra
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/aip.aip_6_17
Specific learning disability (SLD) is a common and invisible yet highly impactful disability. There have been many changes in the field of SLD. These range from changing concepts, introduction of newer diagnostic systems, presentation of the Rights of Persons with Disability Act, of 2016, an increasing awareness in parents, teachers, and public, filing of legal case, and the Honorable High Court issuing orders regarding this disability. All these happenings require reflecting and implementing new strategies. This will not only to benefit all the concerned people but also make the process of diagnosis and intervention streamlined. In the past, Maharashtra has been a forerunner in granting help to these children. Keeping this in mind, it seemed necessary to look at the current scenario of SLD in our state and suggest a way forward.
Keywords: Dyslexia, learning disability, Maharashtra
How to cite this article:
Shah HR, Trivedi SC. Specific learning disability in Maharashtra: Current scenario and road ahead. Ann Indian Psychiatry 2017;1:11-6 |
How to cite this URL:
Shah HR, Trivedi SC. Specific learning disability in Maharashtra: Current scenario and road ahead. Ann Indian Psychiatry [serial online] 2017 [cited 2023 Mar 30];1:11-6. Available from: https://www.anip.co.in/text.asp?2017/1/1/11/208343 |
| Introduction | |  |
Specific learning disability (SLD) is an invisible disability recognized by a few, afflicting many and causing high degree of impact. Since it has an important bearing on academic function, it carries high degree of distress in the Indian society where failure is a taboo.[1]
SLDs are neurodevelopmental disorders affecting 5%–17% of the children.[2] In India, the prevalence of dyslexia varies between 3% and 10%.[3] It is characterized by difficulties in reading, listening, writing, mathematical, and reasoning skills. The most common prototype, occurring in 80% of children, is dyslexia wherein there is a core deficit of phonological processing and is associated with difficulties in working memory. Phonological awareness is an important pointer of reading skill in both consistent and not so consistent orthographies.[4] The other disorders include dysgraphia, difficulties in written expression and dyscalculia i.e. difficulties in mathematical skills.
These disorders occur across all cultures and have a preponderance in males.[4] They have a high degree of comorbidity. Results of population-based surveys suggest that about 30% of learning disabled children have behavioral and emotional problems.[5] Indian studies report 25% to 84% comorbidity.[6],[7],[8],[9],[10] In a study by Bäcker and Neuhäuser on 77 children with dyslexia, psychological comorbidity was found in 66.2%.[11] Of these, the most frequent was adjustment disorders, followed by hyperkinetic disorders and anxiety. A study from University of Colorado reported that children and adolescents with reading disability exhibited significantly higher rates of all internalizing and externalizing disorders than individuals without reading disabilities.[12]
SLD has an impact on the developing self-esteem. Compared to their siblings, they have a lower self-esteem and they believe they have fewer praiseworthy qualities and do not have much to be proud about.[13] They reported higher levels for loneliness and negative mood.[14] Students with SLD have lower grades in all the reported subjects. In school, students with SLD have academic difficulties coupled with lower academic self-concepts [15] and lower self-perceptions and self-esteem.[16],[17] According to motivation researchers, failure and poor performance lead to doubts about general intellectual abilities, which in turn lead to reduced effort, further failure, and poor academic outcomes.[18] Overall their health-related quality of life is significantly impaired.[19] The disability besides having a high impact on the child has a negative impact on the family and parents. This is more so when there is poor awareness, lack of social support and when the disability is attributed to the child's characteristics.[20] Very often the disability is associated with neurological issues such as epilepsy.[21]
The disability is seen to runs in families. It is proposed that a combination of many genes and environmental factors along with contribution of rare variants is etiologically responsible for the presentation.[22] Intervention is in the form of remedial education. Intensive individual or small group training has shown to be beneficial.[23] Provisions and accommodations allow the child to cope with their disabilities.
| Changing Concepts | | |
As the understanding and concepts of SLD are evolving, the diagnostic criteria have been changing. The basic core concept of SLD is that SLD is an academic-based disability which has its roots in the central nervous functioning.[24] The definition provided in the Individuals with Disabilities Education Act states that:
“……A SLD is a disorder in one or more of the basic psychopathological processes involved in understanding or in using language, spoken or written, that may manifest itself in imperfect ability to listen, think, speak, read, spell or to do mathematical calculations, including conditions such as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia.” The term does not include “… learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.”
Diagnostic and Statistical Manual of Mental Disorders (DSM) IV proposed an aptitude – achievement gap as the method to diagnose SLD.[25] The International classification of diseases 10 has a pattern of diagnosis like DSM IV and includes assessment of intelligence and achievement.[26]
This view of gap has not stood the test of either science or practice leading to changes in DSM V. The current picture emphasizes that it is a neurodevelopmental disorder manifesting itself with “persistent difficulties learning keystone academic skills”[27] and which presents itself during the school years. Sometimes, it may appear later when tasks become challenging. The academic skills include reading difficulties (single word and fluency), challenges in comprehending what is read, struggles in spelling and written expression, and problems in mathematical calculation and reasoning. These may occur individually or in combinations. The word persistence is to emphasize that this disability is not temporary and is present even after interventions at school or home. Not only does it persist but also the degree of difficulties leads to academic performance which is below average for age. This translates to a score 1.5 standard deviation below the mean for age in an individually administered, culturally appropriate, and psychometrically robust test of achievement. Further, this disability is specific as it cannot be accounted by intellectual disability, global developmental delay, motor or neurological disorders, or visual or hearing impairments. Neither are they a byproduct of environmental nor financial difficulties. Thus, the academic difficulties appear to be unexpected in that individual.[27]
Confirmation of diagnosis requires comprehensive assessment with data from multiple sources and use of a standardized test for academic achievement. The disability is characterized as mild, moderate, and severe based on the support required by the individual. However, quantification of the disability is not yet available.
| Diagnosis | | |
Over the last few years, very few centers have been given the mandate to certify and recommend provisions for children in state institutions and boards. These centers are in metros. The Indian Certificate of Secondary Education (ICSE) and the Central Board of Secondary Education (CBSE) boards accept certification from professionals accredited by the Rehabilitation Council of India. However, all these centers struggle with lack of norms for our population and defi ciency of tests in all vernacular languages. Till date, the most widely used method is to assess is to rely on comprehensive history and assessment and check for potential and achievement gap. The common tests used to assess potential are the Wechsler Intelligence Scale for Children (WISC) III, WISC IV, WISC – Indian adaptation (by Mahendrika Bhatt), Wechsler Adult Intelligence Scale III, and Cognitive tests of Woodcock Johnson (WJ) III. Achievement is often tested using the WJ III, Wide Range Achievement Test IV, and occasionally Curriculum-based Test for Educational Evaluation of Learning Disability. The parallel shift in testing to match DSM V criteria is yet in transition.
Meanwhile, raising hopes for testing in regional Indian languages is the National Brain Research Centre, who have developed DALI which is the Dyslexia Assessment in Languages of India. DALI allows for assessments in all languages that the child is provided instruction in and particularly the native language of the child. It is currently available in three Indian regional languages such as Hindi, Marathi, and Kannada and in English. It includes a screening tool for school teachers.[28] DALI was developed for classes 1–5 and will be extended it to classes 6–10 by July 2017. Work is in progress to include assessments for Bengali, Urdu, and Tamil.
| Law and Specific Learning Disability | | |
In the late 90's, the state government being a pioneer provided for help to children with SLD by offering provisions in standards IX and X. This was later extended to all classes till XII and finally, to college courses with seats being reserved for these children. The judgment clearly states that it is binding for institutes to provide the necessary help or face contempt of court.
Not only the State Board but also the ICSE and the CBSE examinations have outlined provisions for children with SLD.[2] Although laws existed, implementation was poor.
In 2015, a Public Interest Litigation (PIL) filed in the Mumbai High Court was converted into a suo moto case. This case was regarding refusal to providing provisions to a child with disability. During the hearing, it was brought to notice that there have been very few cases identified and there was a scarcity of centers to assess and inadequate resources. The court therefore passed an order stating “we therefore direct the State Government to set up one full-fledged learning disability centre in each District of the State and also to provide for more disability centers in the cities like Mumbai and Pune. It may be in ratio of at least one learning disability centre for the student population of 1 lakh.”[29] To assist in this process, a committee was constituted of Directorate of Medical Education and Research, Directorate of Public Health, Dr. Harish Shetty, Dr. Sunil Karande, Ms. Rukshana Solapurwala, Dr. Henal Shah, and Dr. Mona Gajre. Work is in progress and centers have been initiated in many districts. However, at present functioning of these centers is lagging due to unavailability of trained personnel.
The next important legal landmark is the inclusion of SLD in the Rights of Persons with Disabilities Act, 2016 (RPWD, 2016).[30] This has given the invisible disability credibility and will encourage mobilization of services and resources. In the act, there are specific provisions for people with benchmark disability. A benchmark disability has been defined by the act as being not <40%.
| Provisions | | |
The provisions by various boards are given in [Table 1].
As mentioned earlier, SLD is one of the benchmark disabilities covered by the RPWD Act, 2016. According to the provisions of the act, the appropriate government and local authorities shall ensure that children with benchmark disabilities till they attain the age of 18 years will have access to free education in an appropriate environment. It further provides that government institutions of higher education and other higher education institutions receiving aid from the government shall reserve not <5% seats for persons with benchmark disabilities (which includes SLD) and upper age relaxation of 5 years for admission in institutions of higher education. Furthermore, in every government establishment, not <4% seats of the total number of vacancies in the cadre strength in each group of posts are meant to be filled with persons with benchmark disabilities, of which 1% each shall be reserved for persons with particular benchmark disabilities and one of which is SLD.
| Difficulties | | |
Troubles start right from the point of identification and go up to the use and misuse of certifications. As a result of lack of awareness as well as the perceived stigma associated with SLD, referral for testing is poor. Thus, SLD remains undiagnosed in a significant proportion of children who continue to struggle with their academic difficulties and the referral gap tends to be high, often more than 4 years.[31] As they continue to face the difficulties in a sphere which is regarded very important at that point in life, these children are at an increased risk of developing adjustment disorder, anxiety disorders, depression, behavior problems such as oppositional defiant disorder and conduct disorder, and also long-lasting impacts on their personality.
For the children who are referred for testing, till recently, there were only four authorized testing centers in Maharashtra, namely, B. Y. L. Nair Charitable Hospital, King Edward Memorial Hospital, Lokmanya Tilak Municipal General Hospital in Mumbai, and Sassoon General Hospital in Pune. Because of this, children and their parents from all over the state had to come to either of these four centers for testing which would involve travelling from their residence to the location of the center, stay for the duration of testing, and losing out on days of work (for parents)/days of school (for children). This discouraged many parents and children.
When it comes to testing, though standardized tests such as WJ are available, norms for Indian population are not available. Further often the children are studying in an English medium school but are poor in the language. Here, testing becomes even more challenging. For children studying in vernacular languages, very few tests for testing–learning disability are available for testing. The few tests that are available in vernacular languages include DALI, and currently, this is not available for higher standards and has no assessment for dyscalculia.
Using the DSM V criteria is difficult as it entails intervention before diagnosis, which is often difficult to provide in all settings and compounded by lack of tests. Besides tests, there is also a dearth of qualified special educators to conduct tests and provide intervention.
Once the child reaches the center, it is imperative that he/she is assessed and treated for comorbidities which occur frequently and can color the findings of the various tests. This is especially true of attention deficit hyperactivity disorder, depression, and anxiety. Thus, the testing may be time consuming. Often the children have poor understanding and knowledge about their disability and symptoms.[32] This further impairs with smooth assessment. With the Right to Education Act barring detention of students till standard IX, teachers, parents, and students often miss the opportunity of early diagnosis and intervention.
Different educational boards such as the Secondary School Certificate – State Board, ICSE, CBSE, and International Baccalaureate have different rules for the certification with some requiring only a certificate of SLD and some requiring a detailed report along with the certificate, some need a renewal at specific time periods, while some boards accept a 1-time certification. As a result, there are no uniform rules across all the boards. Although quite a few provisions provided by the various boards are the same, at the same time, there are differences in the certain provisions provided by various boards for children with SLD such as while some boards allow the children to drop mathematics, some boards do not allow children to drop mathematics though they allow them to take a lower level mathematics. Most of the provisions being for 10th standard students, there are no uniform guidelines about the provisions for students in lower standards and responsibility about granting provisions is entrusted to the school. Thus, while few of the students can avail of the provisions, they are entitled to; few keep struggling with their difficulties without any help.
Considering the nature of the disorder and the fact that most of the testing is qualitative, it is difficult to quantify it into percentage of disability. Percentage of disability is however a requirement while filling up most of the forms for entrances and admissions, such as Indian Institute of Technology, making it difficult for the children to avail of the benefits, they are entitled to. Recent RPWD Act also insists on benchmark disability requirement for help to be granted.
Another difficulty is that postidentification and certification there is a need for intervention in the form of remediation. As quite a few children are diagnosed late, in their 9th or 10th standards, it becomes difficult to provide them with the needed intervention in form of remediation. For the diagnosed younger children, we have very few government centers providing remediation and remediation at private centers not affordable by all as a result, of which a large proportion of these children are unable to get benefit of this intervention. Consistent intervention over a period of time is required for changes to occur. Parents being unaware often confuse remediation for special coaching and tuitions. When hard pressed for time, they are ready to forgo remediation and continue the tuitions.
As every coin has two sides, one another side to the difficulties is the misuse of the certification and provisions. Under academic pressure, some children and parents tend to willfully perform poorly in the tests and hence the professionals testing them need to be quite alert to be able to detect those who are misusing the system. Of late the colleges have also started asking for verification of certificates, and it was noticed that in a few, the signature and certificate were not original. Hence, it is essential that a system is developed whereby the submitted certificates can be cross verified with the issuing authority.
| The Way Forward | | |
We need to begin with increasing awareness in the stakeholders and community at large. Movies such as “Taare Zameen Par” have played an important role in spreading the message. Children who are diagnosed need counseling regarding their disability. This would go a long way in removing the shame and empower them to face the discrimination and teasing which may occur in the class or other settings. Parents too need a clearer perspective, knowledge about the help provided and should be instilled with a hope on the bright prospects of their child. Increasing awareness regarding SLD among parents, teachers and schools will encourage early identification. This will save these children from the struggle they face with academics till their SLD is diagnosed as well as enable them to avail of early interventions. This will also foster inclusive education in the true spirit.
Strict laws that mandate early detection will go a long way in helping this cause. A follow-up with regular assessment of the percentage of children diagnosed from each district every year will help in monitoring the implementation. Furthermore, laws are needed to ensure that the diagnosed children can avail the provisions that they are entitled to even in the lower standards where it is most effective.
To meet the needs, what we need are new comprehensive and functional centers all over the state, at least one in each district. They should be equipped with sufficient qualified workforce to run them and which will cut down the difficulties faced by the children and their parents who otherwise must come all the way to Mumbai or Pune for testing.
Although the inclusion of SLD in the new RPWD Act will bring about positive changes, the question of quantifying SLD needs to understood better. Before the PWD Act, the three centers in Mumbai have after deliberation concluded that if a child is diagnosed on comprehensive assessment to have SLD, then he is likely to be having a minimum of 40% disability and has added this statement to the certificate. This needs to be reasoned and discussed by experts to reach a uniform consensus and allow for provisions for benchmark disabilities.
Standardizing the diagnostic procedures and having systems of practice which can be used across all centers is important to maintain uniformity in diagnostic procedures. Uniform provisions across all boards and for all entrance examinations would allow for seamless transition of the children across boards and institutes. To ensure transition to DSM V criteria, we must make intervention more widespread and accessible in schools. There needs to be a healthy dialog between education and health departments.
More indigenous research in this field is required. This will clarify the facts regarding epidemiology, impact of diagnosis and intervention, and special issues in our languages and culture. Tests in various Indian languages need to be developed. Furthermore, essential is to develop more centers and qualified special educators which can provide affordable remediation. Thus, we do not stop only at the testing but can provide effective and early intervention too.
Maharashtra has been a champion for children with SLD and we hope will continue in this direction by providing the push to upgrade the availability and the quality of facilities across the state by including viewpoints of all stakeholders.
Acknowledgment
We would like to thank Ms. Sheetal Dhillon and Ms. Simran Sachdev for their input in [Table 1].
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
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[Table 1]
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