Evolving Standards for Disability Assessment in Neurological Disorders and the Need for Balancing Physical and Cognitive Deficits: Revisiting Gazette of India Extraordinary 2024

Dear Editor,

The Rights of Persons with Disabilities (RPWD) Act, 2016 marks a shift from a welfare-based to a rights-based framework, replacing the 1995 Act in alignment with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). It expands the list of recognized disabilities from 7 to 21, incorporating conditions like cerebral palsy, acid attack victims, and blood disorders, increases government job reservation from 3% to 4%, and mandates time-bound accessibility, free education for children aged 6–18 years, and penalties for noncompliance to ensure accountability for persons with disabilities. These measures collectively strengthen legal protection and inclusion.

The Gazette of India Extraordinary, issued by the Ministry of Social Justice and Empowerment on March 12, 2024, supersedes the earlier versions released in 2016 and 2018 and introduces more specific guidelines and scales for assessing disabilities related to neurological conditions under the RPWD Act.[1] While these guidelines have made the assessment process more objective by incorporating tools like the Scale for the Assessment and Rating of Ataxia, the modified Rankin Scale, and specific scoring methods for disability in epilepsy and bladder dysfunction (based on definition and frequency), they remain heavily skewed toward assessing locomotor and physical difficulties that affect daily activities, leaving the cognitive and functional component inadequately addressed (Part II, Sec. 3 (ii), VI). The second major concern is the absence of guidelines for disability assessment in head trauma cases resulting from road traffic accidents (RTAs), which is alarming given that these incidents cause hundreds of thousands of deaths and millions of serious injuries in India each year.[2] Reports suggest that younger people and low-income households have higher survival rates but face more severe disabilities and longer recovery times to return to their previous functioning and occupation after RTAs.[3] Notably, with limited neurorehabilitation resources, behavioral and functional changes in survivors of acquired neurological damage often place a greater burden on caregivers than physical or motor impairments.[4,5,6]

We would like to draw the attention of policymakers and stakeholders to the following key observations:

1. The guidelines state that neurological disorders will be assessed based on locomotor disability and other clinical features like spasticity, cognition (intelligence quotient [IQ]/development quotient [DQ], vision, and hearing (Page 499). While the medical authority distinguishes between adult and child patients (25.7 Medical Authority a), this distinction was not applied to IQ as a measure of cognition. IQ/DQ is relevant for assessing cognition in children or those with neurological conditions along with global developmental delay, intellectual disability, or cerebral palsy. However, IQ/DQ is inadequate for assessing neurocognitive functions or decline in adults with typical premorbid functioning. Neurological disorders often impact specific brain pathways, resulting in distinct cognitive deficits that are not fully captured by IQ, a critical limitation that many hoped the revised guidelines would address comprehensively.[7,8]

2. Under subsection 25.2 of the Gazette, chronic neurological diseases of the central nervous system (CNS), including cerebrovascular accidents, neurodegenerative disorders, multiple sclerosis, and chronic drug-refractory epilepsy, should be assessed based on an individual’s physical or mental ability to perform essential life functions, relative to a healthy person of the same age and sex. For instance, in chronic drug-refractory epilepsy, a benchmark disability is defined by a convulsion frequency of 6–10 per month. In children with epilepsy, IQ scores are recommended to assess cognitive dysfunction (subsection 25.4.10). However, adults with a moderate convulsion frequency (fewer than 6 per month) are not eligible for disability certificates, even if they have significant cognitive impairment due to recurrent seizures that may severely limit overall functional capacity. Similarly, assessments in stroke patients are limited to evaluating locomotor impairments, while psychologists receive numerous referrals for neuropsychological assessment due to the evident cognitive dysfunctions associated with these conditions. In such cases, IQ testing alone does not adequately capture or justify the acquired cognitive deficits. The guidelines disavow assessing cognitive impairment and quantifying the resulting psychosocial disability in such cases.

3. Notably, dementia, also referred to as major neurocognitive disorder in subsection 25.4.11, is a condition characterized by a significant decline in mental function due to a medical disease, severely impairing an individual’s ability to perform everyday tasks and function normally in society. Assessing the percentage of disability using the Indian Disability Evaluation and Assessment Scale (IDEAS) in such neurological conditions is fallacious, as the scale is not validated for medical conditions. Moreover, the IDEAS scale fails to encapsulate the progressive cognitive decline that significantly affects patients’ ability to participate equally in society.

4. Another example is multiple sclerosis (25.5. Multiple sclerosis), which is a multidimensional disease needing holistic, multiaxial assessment. Despite this, for the evaluation of psychosocial behavior disability, IQ and IDEAS have to be followed (intellectual disability assessment as mentioned in Section IV and psychosocial disability/mental illness assessment as in Section V). Once again, both the recommended assessments fail to adequately address the complexities of the condition and the resulting psychosocial behaviors, particularly given that the individual was functioning intellectually well before the progression of the disease.

These observations are based on our experience with neurological disability certification in tertiary care settings such as Institute of Human Behaviour and Allied Sciences (IHBAS), which involves multidisciplinary evaluation by neurologists and clinical psychologists, often within high-caseload clinical services. This extensive caseload offers valuable insights into the comprehensive assessment of chronic neurological conditions such as stroke, epilepsy, Parkinson’s disease, multiple sclerosis, dementia, and traumatic brain injury, where cognitive and mental impairments significantly affect functioning. Consistent with this, the Gazette of India Extraordinary (2024) emphasizes incorporating cognitive and mental components in neurological disability certification. However, no standardized or administratively notified tool currently exists for evaluating neurocognitive disabilities. Consequently, institutions follow varied protocols, resulting in inconsistent and subjective assessments influenced by comorbidities and baseline functioning. Notably, neurological sequelae of RTAs remain unaddressed in the Gazette. Disability evaluations are critical not only for compensation but also for medico-legal determinations involving financial management, property handling, and testimonial competence. Courts frequently rely on expert opinions from neurologists, neurosurgeons, and clinical psychologists to interpret complex medical issues such as causation, treatment outcomes, and long-term effect assessments that differ significantly from those conducted solely for welfare benefits.

Studies show that motor disabilities dominate disability certifications (71%), while conditions like neuropathy, epilepsy, and multiple sclerosis are often overlooked due to the focus on motor deficits.[9] Functional capacity, including instrumental activities of daily living such as managing finances and medications, requires both cognitive and physical abilities, which are crucial for independent living. However, current assessments often overlook mental capacity, especially in cases of cognitive decline from chronic neurological conditions.

Hence, there is a critical need to endorse comprehensive cognitive capacity assessments for individuals with neurological disabilities by apex bodies, the Neurological Society of India and the Indian Academy of Neurology (IAN), representing neuroscientists of the country.

The absence of guidelines for neurocognitive disabilities resulting from RTA sequelae remains a significant gap. Establishing clear protocols for these cases in future policy amendments is vital.

Addressing these issues will enable certification professionals to better meet the unique needs of individuals with neurological disabilities. Additionally, for future legislative amendments, this clarity will assist policymakers in making informed changes to legislation and will support the development of policies focused on recovery, rehabilitation, and overall quality of life, especially concerning nonmotor neurological conditions.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

Nil.