**Meimathi Mayavan
The way our brains work is central to everything we experience as humans, from our thoughts and emotions to our ability to move and communicate. From birth to old age, the health and development of our brain is vulnerable to various neurological conditions like Alzheimer’s, Parkinson’s, stroke, epilepsy, and multiple sclerosis. A study by The Lancet Neurology shows that in 2021 over 3 billion (300 crore) people worldwide were living with a neurological condition, such as stroke, dementia, epilepsy, and diabetic neuropathy.
The World Health Organisation (‘WHO’) identifies neurological conditions as the leading cause of disability worldwide. In India alone, almost 53 crore people have neurological conditions such as stroke, headache disorders, epilepsy, and cerebral palsy. With a growing, ageing population, these numbers are only set to increase. Despite this, neurological conditions receive little attention in disability law and policy.
The Rights of Persons with Disabilities Act, 2016 (‘RPWDA’) provides a framework to ensure dignity, independence, equal participation and accessibility for the empowerment of persons with disabilities, including those with neurological conditions. It recognises a few neurological conditions or disabilities, namely cerebral palsy, specific learning disabilities, autism spectrum disorder, multiple sclerosis and parkinson’s disease. A more extensive list of these disabilities is captured in guidelines dated 12 March 2024 (‘Guidelines’) which provide updated assessment criteria for each disability, as issued by the Department for Empowerment of Persons with Disabilities (Divyangjan), Ministry of Social Justice and Empowerment (which oversees overall implementation, monitoring, and enforcement of the RPWDA).
The RPWDA and its subordinate framework include various measures to improve access for persons with disabilities, in line with the UN Convention on the Rights of Persons with Disabilities (‘UNCRPD’). It recognises accessibility as a “precondition for persons with disabilities to live independently, participate fully and equally in society, and enjoy their rights on an equal basis with others” (Article 9, UNCRPD).
When it comes to neurological conditions and their diverse symptoms, how do we understand and address their inclusion and access needs? Persons with neurological conditions experience a range of symptoms, some visible or easy to see, and others that are invisible. These conditions can affect both cognitive and motor functions, causing physical symptoms like tremors, limb impairments, pain and fatigue, as well as cognitive issues such as memory loss, problems in concentration, and impaired decision-making. These can significantly impact daily life and independence. This raises important questions about the legal and policy measures needed to support persons with neurological conditions, ensuring they receive the care, resources, and accommodations necessary for a dignified life. These issues become particularly relevant in light of orders of the Supreme Court, and also Vidhi’s existing research on accessibility for persons with both visible and ‘invisible’ disabilities.
On 29 November 2023, the Supreme Court, in the matter of Rajive Raturi v. Union of India, (W.P. Civil 243/2005), appointed the Centre for Disability Studies (‘CDS’), NALSAR Hyderabad to submit a report on accessibility needs of various disabilities. This report, submitted in July 2024, underscores that without access, all other rights guaranteed to persons with disabilities to create a disability-inclusive world become meaningless (p. 4). It critiques the Harmonised Guidelines and Standards for Universal Accessibility in India, 2021, as published by the Ministry of Housing and Urban Affairs in 2021 (‘HG 2021’) as it “only sketchily dwells on the access needs of less mainstream disabilities, which significantly impacts the rights of persons with such less-discussed impairments” – such as persons with autism, cerebral palsy, intellectual disability, etc (p. 18). Based on affidavits submitted by disabled people’s organisations, it calls for measures such as a register of scribes, subsidised electronic devices for easier communication, and the use of plain language and pictorial communication to support those with autism, cerebral palsy and intellectual disabilities (p. 18, paras 3.3 – 3.4).
Considering these specific requirements, and diverse range of symptoms experienced by persons with neurological disabilities; Vidhi’s existing research, along with broad indicative research on measures to preserve health and independent function, the following basic access requirements emerge:
Physical activity coupled with community support: Regular exercise improves motor functions, balance, and overall health, which can slow the progression of neurological conditions and ease symptoms like pain and stiffness. Physical activity is also known to boost mental health by reducing anxiety and depression, common among those with such conditions. And yet, even well-equipped parks with ramps and railings often lack the necessary, properly maintained exercise equipment that can be used by a diverse user base, highlighting the need for more inclusive and supportive spaces.
It is not enough to provide better access to parks and equipment. For persons with neurological disabilities, social barriers hinder their ability to truly participate in their physical environment, given issues of safety, stigma, and lack of human support. For instance, persons with multiple sclerosis not only face impairment-related barriers but also social ones, such as inaccessible facilities, sensitivity to how they act and appear, and insufficient help from staff at exercise centres.
Access to physical activity must be paired with strong community support systems that foster awareness, safety, and social integration in one’s immediate social environment. As noted in our previous research on ‘Beyond Reasonable Accommodation: Making Karnataka’s Cities Accessible by Design to Persons with Disabilities’ the HG 2021 emphasise physical accessibility for visual, hearing, or mobility impairments but overlook social dimensions, like community engagement and sustained interaction. Studies show that environments encouraging regular, meaningful connections benefit individuals more than those offering only brief, infrequent interactions.
Orderly environments that do not overstimulate: Given difficulties with comprehension and concentration for some neurological disabilities, there is a need for orderly spaces that do not overstimulate or confuse. Our research on creating ‘Sensitised Communities and Sensory Friendly Urban Spaces’, highlights how persons with conditions like autism (characterised as a ‘neuro-developmental disorder’ in the March Guidelines) benefit from predictability and structure, though many public spaces in India are chaotic and confusing. Flashing lights, overcrowded public transport, and unpredictable wait times can overwhelm users, especially those with epilepsy, headache disorders and other sensory sensitivities or cognitive challenges.
Visual aids, such as clear signage, pictures, and videos, can make navigation easier. However, despite the prescription of these requirements in the HG 2021, these tools are rarely used in public spaces. Instead, public spaces often rely on loudspeaker announcements or minimal signage, leaving many feeling anxious and disoriented. Creating environments that are structured and easy to navigate is crucial for accessibility for all.
Access to long-term, inclusive caregiving support: Access to long-term caregiving and rehabilitation services, like physical, occupational, and speech therapy is vital for persons with neurological disabilities. Many need assistance with daily tasks such as bathing, dressing, and eating. Adequate caregiver support is crucial for their independence and access to spaces like parks, schools, and restaurants. Reliable care not only addresses physical needs but also offers emotional support, easing the responsibility on families and ensuring there is community, qualified and compassionate care.
However, many families in India struggle to access these services due to a lack of awareness about disability rights and available resources. The WHO’s Technical Brief on Parkinson’s Disease recommends raising awareness of carer needs and providing culturally sensitive, community-based training. For instance, increasing awareness of the impact of caring for persons with Parkinson’s, providing accessible and evidence-based information on available resources in the community and implementing culturally sensitive, context-specific and person-centred training programmes for carers and families. There is a need for such guidance in India, that is relevant to local contexts.
This lack of awareness is compounded by how the RPWDA, though it aims to provide community living and access to a range of support services for persons with disabilities (Section 5), lacks any framework to implement and monitor such community-based care. Instead, Chapter IX of the RPWDA focuses on registration of “institutions” for persons with disabilities without addressing basic requirements of staffing, rehabilitation, provision of community support services, and disability-specific needs, indicating a failure to move away from institutionalisation.
These areas—physical activity with the presence of community support, predictable and non-overwhelming environments, as well as caregiving support—are some of the minimum basic sectors to address, given their close connection to the fundamental aspects of daily living. Finally, there is a need for community-based services that provide quality care, rehabilitation, affordable housing, and social support. This shift from institutionalisation to inclusive, community-centred care is essential for reducing homelessness, poverty, and social exclusion among persons with neurological disabilities. Together, they form a comprehensive support system that is essential for individuals with neurological conditions to lead fulfilling, dignified lives.
**Research inputs from Meimathi Mayavan who interned at Vidhi.
Disclaimer: The views expressed in this blog do not necessarily align with the views of the Vidhi Centre for Legal Policy.
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About the Authors
Manmayi is a Senior Resident Fellow working with Disability (Inclusion & Access). Manmayi is a graduate of the National University of Advanced Legal Studies, Kochi (2016). Prior to joining Vidhi, Manmayi worked at the law firm of Dhir & Dhir Associates, where she litigated and provided advisory services to various clients in matters pertaining to the Insolvency and Bankruptcy Code. She has also previously worked with the Centre for Law and Policy Research, where she litigated in the areas of public health, women's rights and rights of disabled.
