Digitization of disability certification using technology to curtail infringement of dignity

Abstract

Privacy and dignity are the rights of every human being. The disability certificate issued has the medical diagnosis mentioned explicitly as well as the patients’ photograph. A person with disability needs to produce a certificate to avail the benefits, which the law of the land accords. This article discusses the dignity and privacy issues, which may be felt while producing such a certificate before competent authorities and proposes a blinded disability certificate. Besides, the proposed certificate uses advanced technologies to link a functioning profile to a cloud-based central database.

Introduction

Disability alludes to impairments and activity limitations with participation restrictions. The disability certificate issued by competent authorities in India is heavily tilted towards the medical model. It gives the complete diagnosis such as Cerebral Palsy with Spastic Diplegia, Intellectual Disability, etcetera. The diagnosis is not essential to avail of the benefits that the law accords these individuals. It serves no real purpose as it is not used for treatment purposes. It may be a painful reminder to the patient that he/she has an impairment. Can’t we do without it?

Dignity and Privacy of the Disabled

Persons with disabilities may feel ashamed showing their certificates for claiming benefits such as discounts at railway stations etcetera. We advocate that this process be considered under violation of dignity and privacy breach in its present form. A recent judgment by India’s supreme court challenged the constitutional validity of the Indian universal biometric scheme. It upheld the right to privacy as a fundamental right of all individuals.[1] Though we propose digitalization much like universal biometric scheme, it has various checks and balances covering up the deficiencies of the universal method. This process needs to be upgraded, given recent advances in technology. Hence we propose a blinded disability certificate. The issues related to privacy concerning certain illnesses have been discussed earlier[2] with a few suggestions. However, modern technology is being proposed, along with the concept of a functioning profile. A prototype of the existing disability certificate issued contains a detailed medical diagnosis of the patient and a photograph as depicted in Figure 1a. The disability certificates explicitly mention diagnoses such as neurogenic bowel and bladder, intellectual disability, leprosy, and malignancy. A disabled person may not be comfortable sharing the status of his/her urinary habits with an unknown person such as a railway booking clerk. Conditions such as leprosy are still a stigma in various communities, and the risk of discrimination is high.

Figure 1.

(a) Disability certificate proforma in use and (b) proposed “blinded” disability certificate

Disability Protection Laws in India

Through some of the key aspects integrated in the act, the Rights of Persons with Disabilities Act of 2016 (RPWD Act) addresses some of the long-standing concerns of persons with disabilities. However, as per the act, “the appropriate Government shall ensure that the PWD enjoys the right to equality, life with dignity, and respect for his or her own integrity equally with others.” As a result, a breach of dignity, including as a result of the current certification system, is at odds with the RPWD’s right to a life with dignity.

Global Perspective on dignity and Privacy of Persons with Disability

Persons with disabilities remain a protected group and discrimination is prohibited. It is viewed with the same sensitivity as race, gender, and age. Understanding the dynamic and multidimensional nature of disability requires acceptance of diversity as a starting point. One hundred seventy-seven countries have ratified the United Nations Convention on the Rights of People with Disabilities (UN General Assembly, 2007).[3] Illnesses leading to disabilities differ in terms of aetiology, functional impact, and societal stigma. Besides, the disease and the resultant disability is likely to change over time.

Employers were reluctant to hire a person with spinal cord injury or Asperger’s syndrome even though the productivity of that position would not have been affected by disability.[4] Differences in productivity did not justify the difference in remuneration between individuals with and without a disability. This difference is likely to be a result of discrimination.[5] People with disabilities would like to control what information about them is shared in the public domain. In another study, it came to light that the American College Test (ACT) organization in the US was forwarding information on disability to the colleges. It alarmingly was selling it to third parties as well.[6] According to the Americans with Disabilities Act (ADA), colleges’ use of such information in making decisions for admission shall be considered illegal. Students with disabilities had brought a lawsuit against the ACT organization for divulging details on disabilities to the colleges to which they were applying. The recent General Data Protection Regulation (GDPR) regulations in European countries give individuals the right over how their data is kept, shared, and whether it should or should not be placed in the public domain. Disability status is a protected characteristic just as age, gender, and race. Americans with Disabilities Act 1990 explicitly prohibits discrimination based on disability in employment, public transportation, public accommodation, and telecommunication.[7]

Recommendations

It is important to emphasize that the privacy of the disabled individual is the right of that individual. This information should not find mention in the statute books for the sake of reference and quotation. The proposed blinded disability certificate will feature only the name, address, and biometric identification of the person with a disability. Biometric identification will be in the form of a machine-readable chip, as depicted in Figure 1b. The hard copy of the blinded disability certificate will contain eligibility for disability benefits without any mention of diagnosis or impairment percentage. It will be linked with a cloud-based central database through a QR code. The central database will contain the diagnosis, nature of the disability, percentage of impairment with detailed calculation, and the person’s functioning profile according to the International Classification of Functioning, Disability, and Health (ICF). This database will have adequate data-safety measures and will only be accessible by designated medical professionals subject to the person’s consent in question. Each access to the central database will require an entry in a blockchain ledger.

To not disadvantage prospective employers, the cloud-based central database will have a part accessible to employers. This part will mention the type of suitable work profile for the person concerned and the reasonable accessibility needs in his/her workplace. It will also have a set of personalized recommendations for prospective employers to make the workplace disability friendly; in particular, for that specific person with a disability.

Primary Care Physicians

Primary care physicians will play a critical role in raising awareness and offering assistance, ensuring that these recommendations get implemented successfully. Furthermore, these doctors will play a crucial role in areas where digital literacy is still lacking. Primary care doctors, who are the first point of contact for patients, need to be adequately prepared for any changes in the certification system.

Final Perspective

The disability certificate should not mention the diagnosis and the percentage. It should simply state that this individual is entitled to the benefits that the law of the land accords them. Further details in part, or, complete will be made available through access to the central database after obtaining the person’s consent with a disability.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.