National Conference on ASD 2020 – Indian Scale of Assessment and Disability Certification – Autism Spectrum Disorder

Hi All,

this post is the concluding part of “National Conference on ASD 2020” series, in this post i am sharing the details of Assessment and Disability Certification based on Indian Scale by Mr.Dhanapandian of NIEPMD.
Workshop on Disability Assessment Certification of Autism Spectrum Disorder (ASD)

Presented by C.K. Dhanapandian, Assistant Professor in Rehabilitation Psychology, Dept. of Clinical Psychology, NIEPMD, Chennai

Autism Spectrum Disorder is listed in the covered Disabilities in the RPWD Act, 2016. The act covers 21 disabilities, this session will focus on Autism spectrum Disorder only.
Dhanapandian expressed his disappointment, that none of the speakers who presented in the day spoke about the Indian scale on the sessions happened till now, which clearly indicates the awareness level of these scales in the professional circuit.
Dhanapandian was glad that Prof. Jeyachandran was in attendance for the session, who was the key person involved in developing this framework at at NIMH many years back, during which Dhanapandian was a student at NIMH.
The Ministry of Social Justice and Empowerment for person with disabilities published on 25th April 2016 about the ISA and INCLEN, but not many are aware about its existence till date.
ASD is lifelong neurological condition typically appearing in the first three years of life that is marked by pervasive impairments in the areas of social skills and communication; often associated with hyper-or-hypo reactivity to sensory input; unusual interests of stereotypical rituals, or behaviors; with or without intellectual impairment.

ASSESSMENT FOR AUTISM

INCLEN–ASD tool is used to identify and know the category of the Autism Spectrum Disorder (ASD)
Indian Scale for Assessment of Autism (ISAA) tool will be used to assess the severity.

METHOD OF EVALUATION

When proceeding for evaluation, below three important things are to be taken care of:

Information from parents or primary caretakers

This is an important step; one has to gather as much information possible from parents or caretakers in order to avoid misdiagnosis. Based on this experience, there are more kids who are mis-diagnosed as autism. There is a case of Virtual autism which mimics autism like traits, but it is purely cased due to excessive exposure to Gadgets. This Virtual autism is NOT AUTISM, Mis-diagnosis or over diagnosis happens every day, many parents are falling in to it due to lack of awareness.

Behavioral observation

Clinical observation is very important. A professional has a different perspective from a parental perspective or anybody else. This perspective or knowledge is attained by the professional as a result of seeing many clients on a daily basis over a period of time. As a professional one should be clear that the evaluation should be based on the diagnostic criteria and not purely based on the parental information alone.

Testing by interaction with the subject

One should not see the child and fill the form. Please remember at the end of it, you are going to give a label to the child that is going to have very big meaning at different levels, hence we should be careful with the diagnosis. One has to interact with the child, and give a chance to the child to get information.

In western practice they have a norm where a child needs to have at least 6 hours of clinical observation to allow a professional to conclude on the diagnosis for the child. Unfortunately, we are performing assessment in India in a very first session itself, which is incorrect and this practice needs to be modified.

For Example,

Many a times the child will not look at a stranger who he meets for the very first time, but unfortunately as per diagnostic criteria people will look that as a sign of “Poor Eye Contact” and label the child as Autistic.
Also, many a times, in the very first session any person you have met will not socialize or be flexible, but unfortunately we perform assessment based on the very first session and give a report immediately after, there is a greater chance that it will not be 100% accurate.

MATERIALS REQUIRED FOR THE ASSESSMENT

It is very important that you have the below-mentioned materials, as children tends to plays more than an adult, so we have to give the opportunity for the child to play and explore, which will allow us to make observation and score accordingly. In many places these items are often asked to be brought by the parents. Below are the items that are a minimum requirement to perform an evaluation:

Car, Ball (different sizes), Doll (different types), Rattle, Picture book, Peg board with rings, Sorting board, Cup, Spoon, Beads with a string, Color card/Board, Key, Watch , Hand bell, Paper and crayons, Blocks, Squeezer – Cat / Dog, Fruits/Vegetable toys, Box, Bottle and pellets, Mirror, Shape sorter, Slide with a rolling ball and Musical toys.
WORDS FROM PROFESSOR JEYACHANDRAN

Professor Jeyachandran mentioned that the two scale which Dhanapandian was speaking about is the only Legal document of India. If anyone would like to certify legally, only these two documents are there. Other international scales are NOT VALID in a court of law in India.

The need for these two scales appeared due to an incident happened many years ago. There was a legal case in supreme court, where someone said that child is having autism, the mother contested that the child does not have autism. The person who said the child has autism was using an English (British) scale, the mother contested that you cannot use that.

Supreme court said, you have to use Indian scale for assessment, and there was no Indian scale at that point of time. The task of having an India scale was initially given to one hospital in Delhi, they developed a very very bad scale, when it was presented some of us objected that it was very bad, so the government of India said to give this task to NIMH, it took about 2 years we submitted this scale.

He mentioned that even though it is a valid legal document but still there is a scope for improvement in this, because the timeline given to them for coming up with the scale was so minimal, they were unable to perform all the field work required. There is a scope for revision but these scales are better than the foreign standardized scales.

He also thanked Dhanapandian for presenting these scales to the audience.
INCLEN – INTERNATIONAL CLINICAL EPIDEMIOLOGY NETWORK

International Clinical Epidemiology Network (INCLEN) Trust International, conducted a study based on which they have come up with this assessment tool called as INCLEN-Diagnostic Tool for ASD (INDT). This was developed in the year 2014.

It consists of two section (Section A & B).
Section A divided into 3 parts

A1 – Social Interaction

A2 – Communication

A3 – Restricted Interest

In all of the items in Section A, you would see an Asterix/star symbol in every item either in the left hand side or right hand side. An Asterix/star symbol indicates more importance to that item. Left hand side is parental or caretaker information, Right hand side is clinical observation. If you are unsure after obtaining parental information and also completing clinical observation, only then you should select the option of Unsure. He ran through couple of items from Section A and explained how to make the assessment.

There will be only 3 items that will not have stars/Asterix, in that case, you have to tick the box based on which information you are making the decision.
Section –B is for Scoring, which is done based on responses in Section-A and case history. If you get a detailed case history, scoring will be easy.
ISAA – INDIAN SCALE FOR ASSESSMENT OF AUTISM

Indian Scale for Assessment of Autism (ISAA) which developed by NIEPID (National Institute for Empowerment of Persons with Intellectual Disabilities)

ISAA consists of 40 items rated on a 5-point scale ranging from 1 (never) to 5 (always). The 40 items of ISAA are divided under six domains as given below:

Social Relationship and Reciprocity
Emotional Responsiveness
Speech – Language and Communication
Behavior Patterns
Sensory Aspects
Cognitive Component

ISAA follows below Scoring Procedure:

Score 1 (Up to 20%) – Normal for their age and socio-educational background.
Score 2 (21 – 40%) – Person is completely independent in activities of daily life.
Score 3 (41 – 60%) – Person may be able to perform activities of daily life with minimum assistance.
Score 4 (61 – 80%) – Person needs assistance in activities of daily life.
Score 5 (81 – 100%) – Person is completely dependent on activities of daily life.

ISAA Scores and Degree of Autism

<70 = Non Autism
70 to 106 = Mild Autism
107 to 153 = Moderate Autism
>153 = Severe Autism

DISABILITY CERTIFICATION

Certification of disability for persons with autism may be carried out by Medical Board, duly constituted by the Central Government or the State Government, comprising of members from the following fields:

Chief Medical Officer
Clinical Psychologist / Rehabilitation Psychologist
Psychiatrist
Pediatrician or General Physician as the case may be.

The disability certificate will be valid for a period of 5 years and the disability is mentioned as temporary. Till age of 18 years of age, the disability mentioned in the disability certificate is temporary only. Only after 18 years of age, the disability becomes permanent.

If the child is below 18 years, the disability certificate will be temporary and it is valid for 5 years, after 5 years they have to be re-assessed and get new one.
Percentage of Disability

ISAA Scores and Percentage of Disability

Below 70 = 40%
71-88 = 50%
89-106 = 60%
107-123 = 70%
124-140 = 80%
141-153 = 90%
Above 153 = 100%

MULTIPLE DISABILITY CALCULATION

In case of multiple disabilities, to identify the percentage of disability for the purposes of issuing Disability certificate below formula is used

Multiple Disability Formula =a+(b (90-a))/90.

He explained the formula with two scenarios:
Scenario 1

If person is having two disabilities and their disability percentage is as follows:

ASD – 40%
Locomotor Disability – 50%

Step 1: Pick the disability that has a higher percentage. In our case Locomotor Disability is higher with 50%. It will be A.
Step 2: The disability with lower disability percentage will be B.

Now the formula is a+(b (90-a))/90, if you apply the above figures (i.e. A = 50 and B = 40) it will be, 50 + 40 (90-50) / 90 = 67.777 %
Scenario 2

If person is having three disabilities and their disability percentage is as follows:

Visual Impairment – 80%
Locomotor Disability – 40%
ASD – 60%

In case of three disabilities we have to break them in to two sets. We would take the two disabilities with higher percentages and calculate the formula and arrive at a percentage. Now compare this percentage with the third disability and arrive at a final disability percentage.

This is a method to be followed, so that the highest score cannot exceed 100%, which is the base for disability certificate.
Step 1: Identify two disabilities with higher percentage, in our case Visual impairment (80) and ASD (60) are having the two higher percentages. So, A will be 80 and B will be 60

We will apply the formula now on this, 80 + 60 (90-80)/90 = 86.6667. Now the combined percentage of A and B will become a new A.
Step 2: The new A will be 86.667 and B will be 40

We will apply the formula now on this, 86.67 + 40 (90-86.67)/90 = 88.15%
CLARIFICATIONS TO QUERIES

For kids aged 2-9 years, INCLEN to be followed after which ISAA is to be done.

ISAA can be used for child’s above 6 years for disability certificate.

One parent asked that earlier we use to take assessment in NIPEMD and then go to KK nagar with the assessment report to obtain the disability certificate, are the certificates now given by the NIEPMED itself. He clarified that, NIPEMD does not give disability certificates as they are not authorized for the same. Disability certificates are to be decided by Medical board.

Process is that Guideline is given by Central government. The state government need to initiate to provide certificate from their part. They will select institutions that can provide assessment reports but not the certificates. Even the institutions that would get selected would be run by Government only. After obtaining such an assessment report, they have to go to medical board. In Chennai the medical board is KK nagar , SRTC (State Resource Cum Training Center For Differently Abled) located next to Udayam Cinema Theatre. In other districts, every friday usually in GH (General Hospital) there will be a medical board, we can approach them for the disability certificate. If it is not obvious, they will send for the detailed evaluation, which is the procedure.

All government institutes such as IMH which contains clinical or rehab psychologist registered under RCI (Rehabilitation Council of India) can give assessment reports. Even the medical board consists of Chief medical officer, clinical or rehab psychologists, one pediatrician if the child is below 18, and for above 18 a psychiatrist would be available. Now there is an inclusion of occupational therapist and special educator has been done to the panel for certain extent.

One of the audience members asked, when the assessment is already done by government authorized institute such as NIPEMD or IMH, what is the point the same needs to be done by medical board again for granting a disability certificate. He clarified that it is an issue of making medical board available to every institution that is authorized to provide assessment reports, which is a practical difficulty.

He also mentioned, if the professional by mistake or by manipulation of data, was able to get the disability certificate for a particular person for some benefit in return, in that case the RCI will monitor such professionals and will disqualify the license of such professionals.

Central government can only give guidelines, it’s the state government who needs to take care of the execution part.

INCLEN is actually a 30-page document, we have edited and made it in a shorter form. The manual and the scoring system are available in the Internet for download. There is some clerical mistake on the soft copy manual available over the internet on the scoring and % of disability table. The ranges mentioned there are bit incorrect.

He was rushing many things due to the time constraint, however offered to answer queries the next day, if there are any.

Below are the pictures of handouts given to all participants….