{"id":65536,"date":"2025-06-27T11:30:00","date_gmt":"2025-06-27T06:00:00","guid":{"rendered":"https:\/\/idronline.org\/?post_type=article&p=65536"},"modified":"2026-01-15T07:54:13","modified_gmt":"2026-01-15T02:24:13","slug":"removing-barriers-for-persons-with-invisible-disabilities","status":"publish","type":"article","link":"https:\/\/idronline.org\/kn-in\/article\/diversity-inclusion\/removing-barriers-for-persons-with-invisible-disabilities\/","title":{"rendered":"Removing barriers for persons with invisible disabilities\u00a0\u00a0"},"content":{"rendered":"

More than one billion<\/a> people, or approximately 16 percent of the world’s population, live with some form of disability. At the same time, it is estimated<\/a> that up to 80 percent of disabilities globally are invisible or non-apparent, encompassing a diverse range of conditions.  <\/p>

These include chronic illnesses, neurological disorders, and mental health conditions, which frequently go unacknowledged, even as they routinely affect whether people can participate in society on equitable terms. This lack of recognition manifests in barriers to essential services, employment opportunities, stigma, and a denial of appropriate support.  <\/p>

During a baseline survey<\/a> I conducted in 2022 on employment challenges faced by people with Multiple Sclerosis (MS), many respondents mentioned facing such barriers in the workplace. “I am haemophilic, and whenever I have internal bleeding, they [employers] don’t understand what this is and how to solve it. I am careful about my health, but they [employers] do not care for me. They forget that I have an invisible disorder,” one respondent said.   <\/p>

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Not only does this lack of awareness place the burden of disclosure on persons with invisible disabilities, but it also impacts whether they are able to access the accommodations they need, even in cases where such provisions exist.  <\/p>

The disability data gap  <\/h3>

According to the 2011 Census<\/a>, only 2.2 percent of India’s population has a disability. Not only are these figures outdated, but they also provide a limited perspective on disabilities given that the census covered only seven broad categories, primarily focusing on visible or physical impairments. Several categories, including learning disabilities, neurological conditions, or chronic illnesses, were excluded and effectively overlooked. While there was an ‘Other’ section for conditions that did not fit into the pre-determined categories, it lacked disaggregated data, rendering it insufficient for targeted planning or policymaking.   <\/p>

Since then, alternative estimates<\/a> have suggested that the actual incidence of disability in India may range between 4 and 8 percent. Moreover, while the more recent National Family Health Survey (NFHS-5<\/a>) placed the number of people with disabilities at approximately 4.5 percent, the survey used a narrower definition<\/a> of disability itself. These flaws in data collection, coupled with stigma, which may lead people to hiding disabilities, point to the potential undercounting of invisible and less-evident disabilities in official statistics. As a result, such disabilities remain statistically unrecognised, leading to insufficient resource allocation and limited legal recognition.  <\/p>

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Assessment panels often lack specialist doctors such as neurologists, haematologists, or psychiatrists. | Picture courtesy: Pixabay<\/a><\/figcaption><\/figure>

Existing entitlements remain inaccessible <\/h3>

The Rights of Persons with Disabilities (RPwD) Act<\/a> 2016 added several non-apparent conditions, such as learning disabilities, chronic neurological disorders, and blood disorders, to the ambit of legal recognition and protection. However, the benchmark disability criteria established under the act inadvertently exclude many persons with invisible disabilities.  <\/p>

In addition, there are several barriers to accessing existing provisions under the RPwD Act—ranging from how disability itself is understood and assessed, to healthcare services and workplace accommodations: <\/p>

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1. Assessments rely on visible impairments <\/h3>

To access most entitlements under the act, individuals must obtain a certification from the Chief Medical Officer (CMO) of a government hospital confirming at least 40 percent disability However, this ‘benchmark’ is typically determined through medical assessments that rely heavily on visible, quantifiable impairments like limb loss, vision loss, or hearing thresholds. This approach fails to account for conditions such as chronic pain, fatigue, cognitive dysfunction, depression, and learning disabilities—which often lack objective clinical markers or present with fluctuating intensity.   <\/p>

The problem is compounded by low awareness among medical boards<\/a>. Additionally, assessment panels often lack specialist doctors<\/a> such as neurologists, haematologists, or psychiatrists, particularly in rural and remote<\/a> areas.  <\/p>

For many people, reaching assessment centres itself has been a barrier to certification. In 2023, the government issued a notification<\/a> stating that people could be assessed in the same hospitals where they were receiving treatment. However, geographical barriers persist. These factors result in inaccurate evaluations that assign lower disability percentages, and people who do not meet the benchmark are unable to obtain disability certificates—even though their daily functioning is significantly impacted.   <\/p>

In March 2024, the RPwD Act’s assessment guidelines were revised<\/a> to consider symptoms such as chronic pain, fatigue, sensory deficits, and bladder dysfunction in the disability certification process, especially for rare and chronic illnesses. While this is a promising move, awareness remains low, and certification still relies on outdated, visibility-focused criteria.  <\/p>

2. Assessment centres lack basic infrastructure <\/h3>

Many government hospitals lack adequate support staff and basic infrastructure, such as proper seating, accessible restrooms, or waiting areas for people undergoing lengthy evaluation processes. Applicants typically undergo a full-day evaluation and may have to return for specialist opinions, which significantly delays certification.  <\/p>

In many cases, the medical board issues temporary disability certificates (valid for up to five years), after which reassessments are mandatory to confirm whether there has been a change in the condition. The resulting repeated delays, multiple review stages, and lack of coordinated support discourage those with invisible disabilities from pursuing certification, ultimately excluding them from welfare provisions and legal protections.  <\/p>

3. Existing provisions are underutilised <\/h3>

The gap between legal recognition and practical access to entitlements emphasises the need for greater awareness and institutional responsiveness. Here, the Scheme for Implementation of the Rights of Persons with Disabilities Act, or SIPDA<\/a>, is instrumental. A centrally funded programme, SIPDA is designed to operationalise provisions of the RPwD Act, including creating a barrier-free built environment<\/a>, enhancing accessibility in transport and information and communication technology (ICT) ecosystems, establishing skill development and rehabilitation centres, and enabling early detection and intervention. Crucially, SIPDA also funds awareness and sensitisation programmes and information dissemination through disability-led partnerships. However, this remains underutilized. <\/p>

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Systemic inefficiencies must be addressed through targeted allocations, timely release of funds, and real-time monitoring systems.  <\/p>\n<\/blockquote>

In FY 2022–23<\/a>, more than one-third of the revised allocations for SIPDA went unspent, and in 2023–24, the revised estimate was slashed by over 55 percent. As of March 2025, just INR 44 crore of the INR 111 crore allocation had been used for SIPDA. The Standing Committee on Social Justice and Empowerment<\/a> (2025) highlighted delays in fund disbursement caused by revised technical guidelines<\/a> as implementing agencies had to resubmit proposals to align with the new norms.  <\/p>

Other schemes under the RPwD Act, such as the Accessible India Campaign (AIC) and the Deendayal Disabled Rehabilitation Scheme (DDRS), also see chronic underuse<\/a>. These trends point to systemic inefficiencies that must be addressed through targeted allocations, timely release of funds, and real-time monitoring systems.  <\/p>

4. Gaps persist in healthcare access <\/h3>

Accessing healthcare for an invisible condition remains a significant hurdle in India. According to India’s National Mental Health Survey<\/a>, the treatment gap for mental health disorders ranges from 76 percent to 85 percent, meaning that approximately four out of five people with conditions such as depression or anxiety receive no treatment at all.   <\/p>

Moreover, fund allocations for mental healthcare have remained consistently low, accounting for just over one percent<\/a> of the health ministry’s budget. These gaps are even more stark when it comes to the early identification of disability. Often, children who show signs of developmental delays—such as gross motor, fine motor, speech and language, cognitive, and social–emotional delays—go unnoticed, particularly in rural and underserved areas.  <\/p>

5. Workplaces often lack necessary accommodations <\/h3>

The RPwD Act<\/a> institutes a 4 percent reservation<\/a> in government jobs for people with benchmark disabilities—1 percent each for locomotor disability, vision impairment, hearing impairment, and 1 percent for intellectual disabilities and multiple disabilities. However, conditions such as MS and blood disorders, though legally recognised, aren’t included in the quota.  <\/p>

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Those living in rural areas or belonging to historically oppressed caste groups face compounded barriers.<\/p>\n<\/blockquote>

The act also mandates Equal Opportunity Policies (EOPs) in private entities; however, many organisations do not have them. According to a study<\/a>, 67 percent of Indian public sector companies and 55 percent of Indian private sector companies indicated that inclusion was present but not mandated in their core organisational policies. Even when disabilities are considered, companies limit their focus to physical or sensory disabilities. Conditions such as MS or Parkinson’s remain poorly understood, leading to exclusion by default.  <\/p>

Invisible disabilities can often impair the ability to work under ‘regular’ conditions. Very few companies offer flexible work options such as remote work, quiet spaces, or adjustable hours, despite how helpful these can be.  <\/p>

My baseline survey found that self-employment often becomes the default option for those with invisible disabilities because traditional workplaces remain inaccessible or stigmatising. Disclosure of invisible disabilities in the workplace is also frequently accompanied by risk, including the loss of corporate insurance. Symptoms such as fatigue, weakness, internal bleeding, or bladder issues are often invisible yet disabling, and only a small fraction of respondents had ever received meaningful workplace adjustments—reinforcing non-disclosure and pushing people either into unemployment or self-managed careers.  <\/p>

These challenges are further intensified for people with intersecting experiences of marginalisation.  <\/p>

Those living in rural areas or belonging to historically oppressed caste groups face compounded barriers<\/a> such as delayed diagnosis, low health literacy, economic vulnerability, and limited institutional support. These vulnerabilities reduce the likelihood of accessing workplace accommodations, formal certification, or even acknowledging one’s condition, thereby perpetuating a cycle of systemic invisibilisation. <\/p>

Improving how invisible disabilities are understood and accounted for  <\/h3>

In the present context, legal recognition and accurate assessments closely determine how persons with invisible disabilities are able to access rights and entitlements. This requires coordinated action across multiple fronts:   <\/p>

1. Improving data collection <\/h3>

Clear indicators need to be added for invisible disabilities in national surveys to get a better picture of prevalence and needs. Building on the Unique Disability ID (UDID) portal by integrating existing platforms such as eSanjeevani and the ABHA digital health ecosystem can enable early screening and referral for neurodevelopmental and mental health conditions. <\/p>

2. Streamlining the disability certification process <\/h3>

The revised assessment guidelines introduced in March 2024 decisively recognise symptoms such as chronic pain, fatigue, sensory deficits, and bladder dysfunction. This advancement is critical for achieving inclusive certification, particularly for persons with chronic, invisible, or rare conditions. <\/p>

The Department of Empowerment of Persons with Disabilities (DEPwD) has taken steps to make the disability certification process simpler. These include reducing the amount of personal discretion doctors have during assessments, allowing more hospitals to issue certificates, and permitting private specialists to join the process, under the supervision of a government medical officer.  <\/p>

More than 1,400 doctors have already received training on the new guidelines and the certification portal and forms have also been streamlined. Their implementation must now be prioritised across state and district levels. This means ensuring uniform adoption, maintaining ongoing involvement of specialists, and widely educating certifying authorities about the changes. <\/p>

3. Mandating Equal Opportunity Policies  <\/h3>

EOPs need to be framed and implemented as enforceable instruments of structural inclusion<\/a>, not symbolic compliance. EOPs should clearly mandate flexible work arrangements, provision of reasonable accommodations<\/a> (such as adjusted hours, assistive technologies, and rest breaks), confidential and stigma-free disclosure mechanisms, inclusive recruitment and retention practices, and periodic disability sensitisation across all levels of the organisation. Policies related to reasonable accommodations must also be publicly available, instead of people having to ask for these legally mandated provisions. <\/p>

4. Building awareness <\/h3>

SIPDA must be fully utilised. Key components of the scheme such as awareness generation and community outreach have seen both underfunding and underutilisation in recent years. For FY 2025–26, although the DEPwD projected a requirement of INR 1,704.87 crore, it was allocated<\/a> only INR 1,275 crores.  <\/p>

Robust monitoring mechanisms must track spending and effectiveness to ensure transparency and impact. There must be implementation of time-bound disbursal cycles, real-time expenditure tracking, and flexible reallocation to address unspent balances.  <\/p>

To ensure meaningful inclusion, invisible disabilities must be made visible in policies, services, and attitudes. Building awareness and openness in policies can ease the burden on people to disclose, or even hide, their disabilities out of fear of stigma or exclusion.  <\/p>

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Know more <\/h3>