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|Year : 2018
: 60 | Issue : 3 | Page
|Strength and weakness of the guidelines of Rights of Persons with Disabilities Act, 2016 (dated January 5, 2018): With respect to the persons with neurodevelopmental disorders
Thomas John1, Alka Anand Subramanyam2, Rajesh Sagar3
1 Thomas Clinic, Kochi, Kerala, India
2 Department of Psychiatry, TNMC and BYL Nair Ch. Hospital, Mumbai, Maharashtra, India
3 Department of Psychiatry, AIIMS, New Delhi, India
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|Date of Web Publication||16-Oct-2018|
|How to cite this article:|
John T, Subramanyam AA, Sagar R. Strength and weakness of the guidelines of Rights of Persons with Disabilities Act, 2016 (dated January 5, 2018): With respect to the persons with neurodevelopmental disorders. Indian J Psychiatry 2018;60:261-4
|How to cite this URL:|
John T, Subramanyam AA, Sagar R. Strength and weakness of the guidelines of Rights of Persons with Disabilities Act, 2016 (dated January 5, 2018): With respect to the persons with neurodevelopmental disorders. Indian J Psychiatry [serial online] 2018 [cited 2019 Oct 14];60:261-4. Available from: http://www.indianjpsychiatry.org/text.asp?2018/60/3/261/243386
| Introduction|| |
Rights of Persons with Disabilities Act 2016 (RPWD Act, 2016) came into effect by the Gazette Notification from the Ministry of Law and Justice, the Government of India on December 28, 2016, and became the law of the land. Subsequently, the rules were released on June 15, 2017, and the guidelines were notified on January 5, 2018, from the Ministry of Social Justice and Empowerment (Department of Empowerment of Persons with Disabilities – Divyangjan) through extraordinary Gazette Notification for the proper and smooth implementation of the law. In addition, the Gazette is emphasizing on screening, diagnosis, and certifying people with disabilities.
| Abstract and Interpretation of Rights of Persons With Disabilities Act-2016|| |
RPWD Act, 2016 contains 102 sections spread over 17 chapters and the schedule., Of these, what merits noteworthy mention is Chapter 6, which deals with provisions for persons with benchmark disabilities i.e 40% and above. The issue here being, that though specific learning disability (SLD) is included, the objective quantification of SLD is not devised, and neither is SLD really quantified world over.
| The Schedule|| |
Under clause (zc) of Section (2) of this new Act following specified disabilities are mentioned in the schedule:
- Physical disability: (a) Locomotor disability including leprosy cured, cerebral palsy, dwarfism, muscular dystrophy, and acid attack victims; (b) visual impairment includes blindness and low vision; (c) hearing impairment includes deaf and hard of hearing; (d) Speech and language disability following laryngectomy or due to organic or neurological causes
- Intellectual disability including SLD and autism spectrum disorder
- Mental illness under mental behavior
- Disability due to (a) chronic neurological conditions such as multiple sclerosis and Parkinson's disease and (b) blood disorders such as hemophilia, thalassemia, and sickle cell disease
- Multiple disabilities (more than one of the above-specified disabilities) including deaf-blindness which is a combination of hearing and visual impairments
- Any other category as may be notified by the Central Government.
| Formats under Rules in Relation to Rights of Persons With Disabilities Act, 2016|| |
Eight types of forms, are mentioned in the rules. One important point to note is that the term temporary disability is not mentioned in any of these forms. The term permanent is mentioned in forms 5 and 6, while in form 7 neither permanent nor temporary is mentioned. This itself can lead to a lot of ambiguity, for both the certifier as well as the competent referral authority.
Form 5 is the format for cases of amputation, complete permanent paralysis of limbs, dwarfism, and blindness. A single authorized medical authority can issue the certificate in the prescribed format.
Form 6 is used for multiple disabilities in which 21 disabilities are mentioned. Certificate can be issued in the prescribed form signed by medical authorities of the concerned specialties, countersigned by the chairperson.
Form 7 is for individual disabilities. The format contains 19 disabilities from the above list of form 6 other than dwarfism and blindness. For dwarfism and blindness, only forms 5 and 6 are applicable. Form 7 can be issued by a private medical authority provided it is countersigned by CMO of the District.
Form 8 is for intimation of rejection of application for certificate of disability.
| World Health Organization Guidelines for Health and Disability|| |
Disability is not just a health problem. It is a complex phenomenon, reflecting the interaction between the features of a person's body and features of the society in which he or she lives. Overcoming the difficulties faced by the people with disabilities requires interventions to remove environmental and social barriers. The International Classification of Functioning (ICF) in disability and health, known more commonly as ICF, is a classification of health and health-related domains. As the functioning and disability of an individual occur in a context, ICF also includes a list of environmental factors. ICF is the World Health Organization (WHO) framework for measuring the health and the disability., ICF was officially endorsed by all 191 WHO member states in the 54th World Health Assembly (WHA) on May 22, 2001 (resolution WHA 54.21) as the international standard to describe and measure the health and the disability. The ICF provides a common language for disability. Using ICF with International Classification of Diseases (ICD) makes it possible to provide a full picture of health and functioning.
| World Health Organization Disability Assessment Schedule 2.0|| |
The WHO Disability Assessment Schedule 2.0 (WHODAS 2.0), is a generic assessment instrument developed by the WHO to provide a standardized method for measuring health and disability across cultures. It was developed from a comprehensive set of ICF. ICF is operationalized through WHODAS 2.0 which was developed through a collaborative international approach with the aim of developing a single generic instrument for assessing the health status and disability across the different cultures and settings.
WHODAS 2.0 captures the level of functioning in six domains of life:
Domain 1: Cognition – understanding and communicating.
Domain 2: Mobility – moving and getting around.
Domain 3: Self-care – attending to one's hygiene, dressing, eating, and staying alone.
Domain 4: Getting along – interacting with other people.
Domain 5: Life activities – domestic responsibilities, leisure, work, and school.
Domain 6: Participation – joining in community activities and participating in society.
Each user should choose the solution that best fits the purpose, scope, and setting; there is no single strategy for choosing components or domains.
| International Classification of Diseases-11, Diagnostic and Statistical Manual-5, and Neurodevelopmental Disorders|| |
Both ICD-11 by the WHO and Diagnostic and Statistical Manual (DSM-5) by the American Psychiatric Association, the neurodevelopmental disorders are described under mental and behavioral disorders.
“Neurodevelopmental disorders are behavioral and cognitive disorders that arise during the developmental period that involves significant difficulties in the acquisition and execution of specific intellectual, motor, or social functions” (ICD-11, BlockL1-6A0). “The neurodevelopmental disorders are a group of conditions with onset in the developmental period that produces impairments of personal, social, academic, or occupational functioning” (DSM-5, page 31). It is clear from these two interpretations that developmental disorders with core features of behavioral, social, and academic issues are included under the category of neurodevelopmental disorders, while many other developmental disorders even with neurological origin are not included in this group (e.g., cerebral palsy). In the assessment of disabilities arising out of the following three disorders, namely, developmental learning disorder, autism spectrum disorders (ASD), and disorders of intellectual development (terminologies as per ICD-11), behavioral, social, and academic domains are main areas under consideration.
| Specific Learning Disability Certification and Quantification of Disability|| |
Most definitions of SLD state that a significant discrepancy exists between what the child has actually learned and what the child is potentially capable of learning. So what amount of discrepancy between the achievement and potential should be considered as a significant is still a question mark. Because of this, experts advocate about the response to intervention approach (RTI), as an alternative to the ability–achievement discrepancy model.
RTI involves research-based instruction and interventions, regular monitoring of student progress, and the subsequent use of these data over time to make a variety of educational decisions, including but not limited to SLD eligibility. Furthermore, there are few quantification scales that are researched and clinically tried at many places. Assessed grade versus apparent grade (grade quotient) method (Thomas et al. 2008), mental grade method (Harris 1961), years-in-school method (Bond and Tinker), and learning quotient method are some of the methods to quantify SLD. In 2014, a survey was conducted where a total of 35 institutes of Northern (10), Southern (17), Central (2), Western (2), and Eastern (4) India participated. This survey revealed a lack of uniformity in SLD test material. In other words, variable instruments including NIMHANS learning disability battery, Dyslexia Screening Test, Grade Level Assessment Device for learning disability, SLD assessment scale, and the recently introduced Dyslexia Assessment for Languages of India were used for the assessment of the children with learning disability by professionals.
Few institutes relied only on the clinical history and examination and on the qualitative analysis of teacher's report, child's notebook, and report card. A few years back, honorable High Court of Delhi insisted the Institute of Human Behavior and Allied Sciences, to quantify SLD in percentage, in a case filed by a group of students. In 2006, Education Department under Government of Kerala insisted on quantification of SLD in percentage-like other disabilities. Psychiatrists in Kerala put a great effort to convince the departmental authorities about their inability to certify in percentage. A recent high court judgment in Kerala (WA 1729/2018 dated August 2, 2018) that reservation cannot be granted to students appearing for medical courses, as there is no method of quantification, and thereby no method to ascertain 40% required for a benchmark disability. Similar cases have appeared in the city of Mumbai too, where quantification was sought by the court, and psychiatrists here too have been trying to drive home, the point that the absence of a method of quantification is not equal to an absence of a disability.
Out of the specified disabilities under the Act, SLD is the only disability without a scale to quantify in percentage, while even for the disabilities arising out of blood disorders a scale is notified in the Gazette. Based on the intensity of functional impairment, specified disabilities are further divided as “person with disability,” “person with benchmark disability,” and “person with disability having high-support needs.” Those persons with disability below 40% are included under “person with disability” category but they are not eligible for any benefits under the Act. Without a scale, the certifying doctor cannot quantify the SLD in percentage. Hence, in the present context, one can only say whether the candidate is having or not having SLD for that particular subject/grade which may or may not even vary later.
| Strength and Weakness of the Guidelines of Rights of Persons with Disabilities Act 2016|| |
The strengths of the RPWD Act, 2016 included a stepwise guideline first time for intellectual disabilities (ID), SLD, and other disabilities and stressed on the assessment of disorder severity. However, the guidelines have some weak points which will not serve the purpose of the Act, especially in the case of persons with disabilities suffering from neurodevelopmental disorders such as ID, ASD, and SLD.
- Nowhere is it mentioned how to assess this severity and this becomes a drawback. Honorable Courts and Educational Departments insist on various occasions for SLD certificates with percentage of disability putting certifying medical officers (psychiatrists) in dilemma
- Policy-makers and expert committee members for the guidelines overlooked the fact that, SLD is also disorder under neurodevelopmental disorders and just based on the nosological status. Pediatricians and pediatric neurologists are included, and Psychiatrists are ignored in the certifying medical board team of SLD. In other words, the psychiatrists who are key persons in the diagnosis and management of behavioral problems in children and adolescents are not included in the certification board (medical authority) for SLD. Before the guidelines were published, the psychiatrists were the key professional experts who were doing the certification for SLD and now pediatrician will be primarily responsible for certification purpose, and the psychiatrists are not included in the medical team for SLD certification. In Chapter–6 of the Act where job reservation is mentioned mental illness, ASD, SLD, and ID are clubbed together. In the Schedule of the Act ASD, ID, and SLD are grouped under the same subtitle (2). Again in the forms -1 and 2 appended to the rules of the Act disabilities are aggregated into five groups, where mental illness, ASD, SLD, and ID are in the same group. Certainly, when Medical Authority is constituted under the Guidelines, the psychiatrists are excluded from SLD certification board. This is a major weakness of this guideline
- Another drawback in the assessment of SLD is that the existing NIMHANS battery is applicable only up to the age of 12 years or grade seven. But in reality, main certification of SLD is for 10th- and 12th-grade examinations, and the age of certification as per the guidelines is 8, 14, and 18 years. Further, the NIMHANS battery is a screening tool and not diagnostic. It covers only English language and mathematics and does not assess problem in Hindi or other regional language that limited the appropriateness of tool. Hence, NIMHANS battery has to be modified for that purpose or a better tool needs to be created for the country
- In the case of ID, the guideline insists on diagnosis based on Vineland Social Maturity Scale (VSMS) and intelligence quotient tests, ignoring the role of clinical assessment. Disability calculation is based only on VSMS score chart ignoring the age of the person with disability (irrespective of the age, VSMS score of 0-20 is interpreted with 100% disability). It is imperative that this mistake be rectified
- WHO recommends assessment of health-related disability by simple clinical methods based on WHODAS 2.0 (six domains) which is not properly followed in the above Gazette notified guidelines in the case of assessment of disabilities related to neurodevelopmental disorders. Psychometric tests are useful but not an absolute necessary in all cases. The WHO recommends ICD for diagnosis and ICF (International Classification of Functioning) for disability quantification in health-related cases.
| Conclusion|| |
Exclusion of psychiatrists who are clinicians related to management of behavioral aspects, from SLD assessment and certification will have far-reaching consequences. Some of the pediatricians and pediatric neurologists who are newly introduced in the certification board expressed their apprehension and lack of clinical awareness regarding the behavioral aspects of neurodevelopmental disorders to the authorities in some of the Indian states. Since the above notification, children with disabilities have been suffering long queues and running form pillar to postdue to lack of pediatrician expertise in dealing with certification of children with neurodevelopmental disorder.
Second, the issue of quantification and use of a better more standardized tool for assessment is imperative.
Thus, necessary modification is imperative both in the Act and guidelines as far as SLD is considered.
| References|| |
Thomas J. RPWD Act 2016 & Mental Health, Handbook; March, 2018.
The Gazette of India. No-59, The Rights of Persons with Disabilities Act, 2016. New Delhi: Ministry of Law and Justice; 28 December, 2016.
The Gazette of India. No-489, Rules for RPWD Act 2016. New Delhi: Ministry of Social Justice and Empowerment, Department of Empowerment of Persons with Disabilities; 15 June, 2017.
Ustün TB, Chatterji S, Kostanjsek N, Rehm J, Kennedy C, Epping-Jordan J, et al.
Developing the World Health Organization disability assessment schedule 2.0. Bull World Health Organ 2010;88:815-23.
National Association of State Directors of Special Education. Response to Intervention: Policy Considerations and Implementation. Alexandria, VA: National Association of State Directors of Special Education, Inc.; 2005.
Sagar R, Pattanayak RD, Choudhary V. Profile of services and resources in a postal survey: Challenges and need for service development. In: Sagar R, Pattanayak RD, editors. Specific Learning Disorder: Indian Scenario. New Delhi, India: Department of Science and Technology (DST) & A.I.I.M.S.; 2014. p. 47-64.
The Gazette of India. No-61, Guidelines for RPWD Act 2016. New Delhi: Ministry of Social Justice and Empowerment, Department of Empowerment of Persons with Disabilities; 5 January, 2018.
Dr. Alka Anand Subramanyam
Department of Psychiatry, TNMC and BYL Nair Ch. Hospital, Mumbai, Maharashtra
Source of Support: None, Conflict of Interest: None