Advocacy and Media – Seva Setu

26 May

Overall disability percentage calculation – its mathematics and inconsistencies

In our previous posts [link] [link], we focused on various challenges we face while working on issues in disability. In this post, we shall discuss how the overall percentage disability of a person is calculated by a medical board. Understanding this process sheds light on how people get scored a value which determines whether they receive pensions or not.

Another important reason for understanding this process is to question the inequity we notice in the assessments made on a daily basis by a medical board. We come across cases wherein two beneficiaries, with striking similarities in the nature of their disabilities, get assigned very different percentages. This is crucial because a person receiving a percentage of less than 40% is simply ineligible to avail the state’s pensions. And we do notice cases where people with similar symptoms are scored on either side of the 40% threshold. In such cases, we have no means to reason the differing assessment.

We refer to documents released by the Ministry of Social Justice and Empowerment which lay out the guidelines for assessing disability [1] [2]. In this post, we highlight the broader mechanism used to evaluate this percentage and also raise some concerns about its use on the ground. We focus on just the assessment of physical disability in this post.

Physical disability is identified and assessed in the upper and lower limbs of the body. The guidelines categorize each of the two limbs into components. For instance, the lower body is categorized into two main components – Mobility and Standing. Each such component is further divided into sub-components.

Quantifying sub-components
Each component generally is divided further into sub-components. For instance, the Arm component of the upper limb consists of sub-components like measuring the loss of motion, muscle strength, and coordinated activities. Likewise, the Hand component of the upper-limb involves measuring prehension, sensation, and strength. Each of these three sub-components, in turn, have sub-sub-components which need to be assessed. Various such sub-components and sub-sub-components are defined in the guidelines [1].

Consolidating various sub-components
One score can be given to a sub-component by consolidating values of each of its sub-sub-components. Some of these sub-sub-components are quantitatively assessed and some qualitatively. For instance, the Arm component of the upper limb contains loss of motion and muscle strength as sub-components. Loss of motion is defined quantitatively by averaging the loss in the three joints of the arm – shoulder, elbow and wrist. Each joint’s loss is measured by the percentage loss in angle of movement in the joint due to the problem. On the other hand, muscle strength is relatively qualitative, wherein a value between 0-100%, at an interval of 20%, is assigned to a joint based on physical inspection.

Consolidating components
In an attempt at quantifying and consolidating these various components, the following formula is provided to combine these different sub-components: , wherein a and b are the scores of the various components. If a limb has more than two components, then the formula is repeatedly applied, in which the answer produced by the formula in one iteration becomes the value of ‘a’ in the next iteration.

An example
Here is an example of how one would compute the overall percentage disability for a person affected by Foot Drop, a case of polio affecting one’s foot, and a relatively common occurrence among those differently abled we facilitate —
The components defined for the lower extremity of the body are – Mobility and Stability. Mobility has Range of Motion and Muscle Strength defined as sub-components. This is how the values are quantified and consolidated –

Component 1: Mobility
Sub-component 1: Loss of range of motion (ROM)
Three joints – hips, knee, and ankle are evaluated. Each is weighted equally (30%, adding to a total 90%). We can assume the hips and knee are unaffected in this case. The disability of the ankle is quantified as –

Sub-sub-component	Active ROM	% Loss
Dorsiflexion	0	100%
Planterflexion	full	0%
Inversion	0	100%
Eversion	full	0%

Value for the total loss in ROM:

Sub-component 2: Muscle strength

Muscle strength is again calculated at three parts of the lower limbs – hips, knee and ankle. Assuming the hip and knee to be unaffected, the strength in the ankle is calculated as –

Sub-sub-component	Strength (scale of 1-5)	% Loss
Pl. flexors	5	0%
Dorsiflexors	0	100%
Invertors	0	100%
Envertors	5	0%

The values of 0 and 5 are provided based on visual inspection and the doctor’s expertise in assessing a score between 1-5. The total loss in muscle strength is then calculated as –

The combined value of mobility is calculated as –

Component 2: Stability

Let us assume that the stability component is unaffected in this case.

The overall disability percentage for the person would hence be 27.5%

Issues

As much as we appreciate the mechanism to make this process objective, we raise here some concerns in the manner in which its implemented on the ground.

Lack of transparency

Our biggest challenge on the ground is a lack of transparency in the calculation of the overall disability percentage. This calculation is not provided anywhere in the certificates that are finally handed out to the citizens. One in thirty citizens we facilitate ends up receiving a very different overall percentage as compared to another in spite of having similar symptoms to the other. The matter complicates in such cases. Our field team is left with no concrete information to appeal against such cases. To add to this woe, there exists no well-defined process to appeal for a re-evaluation. One has to speak to the doctors from the board and plead a case. They rarely agree to re-evaluate and even when they do, they agree to do so at a much later date. This adds to the inconvenience to the common man, given that s/he generally has to travel a good 20-50 km to visit the district hospital each time.

The right way to go about this is to publish this entire calculation and make it open to public scrutiny. In doing so, one is at least equipped with the right information to appeal a case. Neither is implementing such a process infeasible.

Validity and Random errors

There exist various sub-components in this evaluation system which still rely on non-quantitative methods of evaluation. Such a qualitative assessment could vary the overall score by a good number of points. For instance, in the example above, had the values of the muscle strength been rated 2 in each of the cases where it was 0, signifying a mild but prevalent issue, the overall percentage would have jumped to 30%. Such errors could then add up when consolidating scores from different components, greatly affecting the overall score. From an assessments viewpoint, the instruments used to assess metrics like muscle strength ought to be externally validated. There ought to be several well-established instruments which reliably assess such metrics.

In all, we do realize that there may not be a thoroughly objective way to replace these seemingly qualitative metrics, but we strongly believe this to be a research problem in itself. We believe that innovative assessment methods using low-cost technology like camera phones, sensors etc. can quantify the severity of specific conditions like muscle strength etc.

Systematic errors?

Using such a score to quantify disability warrants a careful study on any systematic errors that may be occurring. Doctors and medical boards may be systematically misinterpreting the formula in specific cases and assigning very different scores as compared to their peers in other boards. Assuming the overall distribution of the differently-abled population to be similar, it is necessary to routinely look at numbers from different boards, districts, and states. This would identify systematic errors in the way the formula is interpreted and evaluated. Putting together this data is, however, an uphill task.

Why is the cut-off at 40%?

The reason behind selecting a cut-off score of 40% as the point of eligibility for pensions is not very clear. Nothing in the formula, to the best of our understanding, dictates setting such a value. Studying the distribution of percentages of every person evaluated for disability till date is of relevance when understanding the role of 40% as a threshold. This will reveal whether the 40% mark is leaving too many behind.

A silver lining

A silver lining in these cases is our field team has become well equipped. They’ve grown to possess a keen sense of what the overall percentage of a person would end up being. Consequently, they are fairly accurate in spotting when such a miscalculation has happened. We then work closely with such families in ensuring they visit the medical board on another day, giving them hope that they would be evaluated correctly!

Interested to know more about our work? Write to us at contact _at_ sevasetu.org

References

[1] http://www.ccdisabilities.nic.in/page.php?p=guide_others
[2] Explanations of the Guidelines and Gazette Notification of the Ministry of Social Justice and Empowerment, by Dr. Ratnesh Kumar et al. Link: http://niepmd.tn.nic.in/documents/Disability%20Evaluation.pdf

05 May

The case of unwanted affidavits – Obtaining disability certificates

The Government of India provides pensions to differently-abled citizens of India. This is a powerful welfare program which ensures that they are supported by our society to live with dignity.

Process: The first step into utilizing any of these welfare programs is to obtain disability certificates. Disability certificates are documents provided by our government which quantifies a person’s disability. A medical board comprising 3-4 experts sits at every district hospital once a week. They screen citizens who claim to be differently-abled and provide a number in the range of 0 to 100 to each such candidate. In cases where the board concludes that the person’s condition is fixable, no number is provided and instead, interventions like physiotherapy and medication are prescribed.

Any citizen who feels s/he deserves such a certificate is free to submit an application and get her/himself evaluated by such a medical board. The documents required to submit such an application are simply a proof of residence and two passport sized photographs. Seva Setu helps mobilize people who’re unaware of this process and facilitates this process for them.

Simple as it sounds, some district hospitals which we work with demands an additional document when submitting an application – an affidavit. District hospitals in some districts have made this additional document a compulsory document to apply.

A sample affidavit

We strongly oppose this requirement for the following reasons –

An artificial requirement: This is not mentioned in the circulars sent out by the Ministry of Social Justice and Welfare. which state the requirements clearly (see image). Neither is it enforced consistently. Some district hospitals, such as the one in Patna, do not ask for this requirement. Moreover, we oppose the justification in having such an affidavit, to begin with. The affidavit requires a person to attest that s/he indeed is differently abled, is in need of a certificate, and promises that s/he has not applied for such certificates before. The first two points are facts which the medical board would eventually evaluate and ascertain. The third does not really demand a sworn affidavit. A self-attestation should also be equally valid. In fact, Delhi’s High Court only recently removed the requirement of affidavits completely!

A government circular clearly stating the requirements to apply for a disability certificate

A financial burden: More importantly, it is a significant financial burden on citizens. The process to obtain a disability certificate, and thereafter obtaining pensions is certainly an involved one. A beneficiary ends up visiting the district hospital at least 3-4 times before s/he finally receives her/his certificate. Each such visit costs INR 200 to and fro, considering that the person typically travels from far off blocks/taluks of the district to the district hospital. An additional requirement in such a case is the affidavit, which costs upwards of INR 200. At Seva Setu, we have spoken to multiple notaries to get them to charge a “nominal” fee of INR 190 to people we facilitate. But any layperson visiting them is charged between INR 200-300.

A complicated process: Those not being facilitated by an organization like ours go through a hard time getting their work done. Nowhere is this requirement clearly mentioned at the district hospitals which impose this. A person has to ask around to figure out the requirement. Once figured out, the affidavit creation process is generally not even in the premises of the hospital. One has to travel to a court-house complex or any such public administration office to obtain such a document. All this is to be done in a time interval of two hours – the window that’s provided by the hospitals to accept applications for disability. Past this interval, beneficiaries have to wait a week to try the same process again.

Next steps

We, at Seva Setu, are trying things on multiple fronts to quash this seemingly artificial requirement. We have seen success previously in this regard – late last year, we had worked with the district hospital in West Champaran and got the Civil Surgeon (the highest authority in a district) to quash this requirement. But this happened thanks to paperwork initiated by organizations who had worked in this regard much before we realized this issue, making our job easier. In our current effort to quash this requirement in Vaishali, we have written letters to the Civil Surgeon, are in the process of meeting him in person and have also raised this issue with Bihar’s public grievance redressal system. We will keep our readers posted on our progress in removing this requirement.

Meanwhile, in our series of posts on our on-ground advocacy efforts, we shall discuss other discrepancies we face in our day-to-day operations. Stay tuned!

11 Apr

Visitors at Seva Setu

Say hello to Ujjval Pamnani, a research engineer with an education-technology company. Having been through our posts for a while now, Ujjval decided to spend a short break from his work at our Patna office. He wanted to understand how we operate and how we are able to affect the last-mile.

Ujjval spent three days visiting various villages in both, Phulwari and Rajapakar blocks of Patna and Vaishali district respectively. Here’s a brief summary of his visit –

He participated in a Village, Health, Nutrition and Sanitation day at a village. He noticed both, the effectiveness of having such a government program and some limitations in its implementation.
He audited our Citizen Care program, where he saw first hand the poor utilization of government pension schemes. He got to talk to families to get a sense of where the pain points were.
He saw how, through our Each one, Reach one program, we ensured that mothers at the last-mile were provided basic health care. He visited mothers in villages who had been contacted by our call champions and who were being suggested to carry out simple interventions to improve their and their children’s health.
He spent time at our stitching training and production centers. He saw how we generate employment in the ecosystem by engaging with women from rural and semi-urban areas.

He had some sharp observations on how to make such interventions sustainable. We had very informed discussions on what small changes can be brought about in existing systems to produce tangible results. This experience also led him to raise several fundamental questions as to why the inequity in our current society is so stark. We will soon have a guest post from Ujjval on his observations and learnings 🙂

We hope these experiences will lead him to bring about concrete and positive change for the masses.

From team Seva Setu — all the best, Ujjval!

18 Feb

On-ground issues – Seva Setu’s advocacy efforts

One of Seva Setu’s strengths is we keep our noses to the grindstone on the various issues we address. In the course of our field work, we unearth plenty of discrepancies which dent the spirit and letter of the guidelines which should drive such work.

Through a series of posts, we will write on issues which come up in implementing well-meaning schemes of the government. We want to pick each case and dive deeper into it. This effort will be accompanied by advocacy attempts on-field, by meeting officers in the departments concerning these discrepancies. We want others in this field, who’re finding their own way through these little hurdles, to be able to learn as much from our experiences, efforts, and mistakes.

We will cover the following topics and programs:

The curious case of the affidavit: Applying for a disability certificate entails a common man to submit a proof of residence and two photographs. However, we face an unusual requirement in some of the blocks we work in – the requirement to file an affidavit in addition to these documents. Officials at some district hospitals (where disability certificates are prepared) demand an affidavit signed by a public notary which confirms (once again) the identity of the person. The process to acquire such a certificate doesn’t even require the beneficiary to be physically present. What’s worse, notaries charge 200 INR per affidavit that’s provided. This requirement of an affidavit is not mentioned in any official document and are now fighting tooth and nail to remove this process.
Assessment of differently able people: The department of empowerment of persons with disabilities lays out guidelines to assess the differently able. These parameters are used to provide certificates by the government, which are then used as documents to provide benefits such as pensions etc. What we’ve found in our work, however, are seemingly unjustified decisions being made by medical boards when they assess a person’s disability. Does this point to subjectivity in the guidelines, a lack of sufficient training regarding the guidelines or more?
Shortage of equipment: Most of our visits to the composite regional centers, those centers which disburse equipment to the differently able, almost always are short of the equipment needed. We don’t have an answer to why this is the case. We also observe that the popular model used by the government in disbursing such equipment is by conducting camps. Why is this the case? Why is there a constant shortage in the equipment required to be present at the CRCs?
Mental health: Diagnosis and treatment of mental health related illnesses remain to be unexplored in Indian healthcare. Unfortunately, there seem to be a disproportionately small number of rehabilitation centers, places which serve as care homes for those with mental illnesses, in India. Why is the number this low? What should be the right number? We discuss some challenges in our on-field work in this space.

These are some of the topics we’ll start looking into.

Stay tuned.

24 Jan

Seva Setu at BIT Mesra

The Gandhi Fellowship program is an annual fellowship which encourages young citizens of India to try out social entrepreneurship. They have a residential program where they teach young citizens the realities of bringing about changes at the last-mile.

The good folks at the fellowship program invited Seva Setu for an expert talk at their annual visit to the Birla Institute of Technology, Mesra, one of the top-rated technology universities in India. They wanted us to share our experiences with the ‘nascent young minds of tomorrow’. Specifically, they wanted to know what inspired us to get started with our work; being primarily from an engineering background, how our core team makes use of our technical skills in solving problems in the social domain; and what are the key skills we look for when we hire folks on our team.

It was a fun day overall! It was a young audience who had very little exposure to the concept of social enterprises. They confronted some hard questions – as to what would stop their heads from doing what their hearts say. Seva Setu also showed them a flavor of the severity of problems which are prevalent at the last-mile and the kind of innovations that one can come up with in bringing about measurable changes. Towards the end of the talk, they went back being made aware of the tangible, not-so-less-traversed-anymore career choice of being social entrepreneurs.