Navigating the world as a parent of a child with disabilities or developmental delays is a journey filled with unique trials and tribulations. Families often face numerous hurdles, from obtaining medical care to securing appropriate educational opportunities and accessing benefits. The foundational document in this journey in our country is the disability certificate, a crucial instrument that opens doors to various government schemes, care facilities and subsidies and services.
While visiting villages in the tribal blocks of Yavatmal district in Maharashtra, a few of the experiences with caregivers really had me thinking about the disparities in actual ground situation. With the limitations of a mere document and the realities of living with disabilities, I ponder: should a certificate determine the expectations of families raising children with such challenges?
Understanding Disability And The Certificate
According to the last census conducted in 2011, approximately 2.68 crore individuals in India live with disabilities. Broadly categorized into physical and developmental types – these include visual and hearing impairments, speech issues, locomotor disabilities, mental retardation, and illness. Each of these conditions presents its own set of challenges and requires distinct approaches for support and care.
For many families, obtaining a disability certificate is the first step toward accessing resources and assistance. This certificate is crucial for availing of benefits, concessions, and support systems categorised under various government programs. The Rights of Persons with Disabilities Act, 2016 facilitates the entire legality of this system.
The disability certificate serves as a vital document, validating a person’s disability status based on a medical assessment. It allows individuals to access services, enjoy tax concessions, and avail education and employment opportunities tailored to their needs. To be eligible, a person must demonstrate a disability of more than 40%. For children, the requirements differ based on age and type of disability, further complicating the journey for families.
Community Validation
During the interviews, we came across children with diverse developmental disabilities and challenges. This piece takes support of two distinct yet so connected cases to further the cause of the discussion. The caregivers in both the cases came from different socio-economic backgrounds yet had many similar experiences.
Symbrachydactyly is a rare congenital malformation involving short fingers/toes that may be webbed, misshaped, or missing. It has an incidence of approximately 1 in 32,000 live births. There is no standardised treatment algorithm for its management. The function of the hand is often not adequate and requires early surgical intervention. Management has to be individualised in each and every child, depending upon various factors.
Clubfoot is a birth defect affecting approximately 175,000 – 200,000 children each year globally. It can have significant implications for physical abilities such as standing, walking, and maintaining balance. The condition involves the twisted inward and down foot. Both feet affected in many cases. Despite available treatments like the Ponseti method, braces, and surgeries, clubfoot can result in lasting disabilities.
The significance of a disability certificate for these children lies in the recognition and validation of the physical limitations caused by the condition, or otherwise referred to as ‘affirmative action’ popularly. This certificate can help individuals access various forms of support, including financial aid, medical benefits, and accommodations at educational institutions or workplaces.
Additionally, it serves as formal acknowledgment by health authorities of the individual’s condition, potentially opening doors for specialised medical treatment and social services aimed at improving their quality of life.
Speaking To A Caregiver
Further discussions revealed the complexity of the challenges families face in this interconnected day and age. When asked about previous efforts to secure treatment, the caregiver revealed:
Interviewer: “जस मी तुम्हाला आधी विचारल की treatment साठी कुठे नेता का तर तुम्हाला माहिती आहे का की कुठे नेता येईल अस?”
Translation: “Earlier I asked where you take the child for treatment, do you know where it can be done?”
Caregiver: “नाही.”
Translation: “No.”
In our interviews with caregivers of children with developmental disabilities, the anxiety of the parent and the family in getting done with the documentation (certificate and related identifications) was found to be common among the different regions of the district. What was further disheartening to observe was that few of the caregivers were not even clear about why their children are in/eligible to receive the validation, due to the lack of consensus among the healthcare service providers such as doctors,
CHWs, and people who were first points of guidance and referral; since many of them gave differing opinions (note: not the facts/reasons as per the government policy), which ultimately confused and discouraged the family to further seek clarity on the matter.
Interviewer: “अजून काही कारण आहे का ज्याच्यामुळे नेता नाही आल ?“
Translation: “Is there any other reason why you did not take her for treatment?”
Caregiver: “म्हणजे हे याच सर्टिफिकेट नाही निघाली बाळाची अपांगची त्याची काळजी वाटते“
Translation: “Feel anxious about the absence of the certificate.”
Interviewer: “बर तुम्ही जे म्हणलात सर्टिफिकेट काढायच हे कस करायच काही मार्गदर्शन तिथे तुम्हला मिळाल का ? कस मिळाल ? “
Translation: “Did you get any guidance on how to get the certificate?“
Caregiver: “त्या मॅडम म्हणे दवाखान्यात जा बा यवतमाळले लवकर सर्टिफिकेट काढा म्हणे म्हणजे लवकर पगार लागू होते अपंग आहे तो त याचे बाबा हो म्हणे त थे म्हणे अपंग असल्यामुळे सर्टिफिकेट निघत नाही म्हणे मग मास्तरिण ताई आळती सुनीता ताई म्हणे अपंग आहे बाळ म्हणे सर्टिफिकेट काढा म्हणे त यांनी डॉ. ले दाखवल तर ते म्हणे बलाच सर्टिफिकेट निघत नाही म्हणे दुसऱ्या डाव गेले . आम्ही मग काही कोशिश केली नाही लक्ष दिले नाही अपंग नाही म्हणे त मग किती डाव आले डॉ. त म्हणे कोणता डॉ होय म्हणे अपांगच सर्टिफिकेट देत नाही म्हणे मग याचे बाबा म्हणे आम्ही का करू म्हणे देत नाही त म्हणे या मॅडम म्हणे गरीब आहे म्हणे सर्टिफिकेट कडून त्या म्हणे त यांनी काही लक्ष दिलाच नाही. “
Translation: “The madam said go to the district hospital and get the certificate soon, so that the wages are applicable early. There it was conveyed to us that the certificate is not issued because he is disabled. Then as per the suggestion of the CHW, we referred him to another doctor. The doctor informed us that only a disabled person gets the certificate. His father asked what we should do now, they say they will not give the certificate and we are poor as such.”
Interviewer: “आणि याच्या नंतर सर्टिफिकेट काढण्यासाठी काही मार्गदर्शन वगरे म्हणजे काय कराच अस काही मार्गदर्शन कोणी दिल का ?”
Translation: “And after this, has anyone given any guidance as to what to do other than getting the certificate?”
Caregiver: “नाही “
Translation: “No.”
These responses highlight a recurring issue where families feel uninformed about available options and resources.
Lack Of Awareness And Specific Know-How
The caregiver’s response underscores a lack of accessibility or awareness about medical services, reaffirming the need for better systemic guidance. Accessing appropriate medical care or educational interventions depend heavily on this document, as per the common perception.
Interviewer: “याच्या आधी कधी डॉक्टर ला दाखवल किव्हा कुठल्या दवाखान्यात दाखवल कधी?”*
Translation: “Have you ever shown the child to a doctor or any hospital before?”
Caregiver: “नाही कुठेच नाही.”*
Translation: “No, nowhere.”
The discussion with the caregiver revealed challenges in even reaching this stage:
Interviewer: “तुम्हाला गरज वाटली कुठे नेण्यासाठी?”*
Translation: “Did you ever feel the need to take the child somewhere ?”
Caregiver: “नाही नेलं नाही कुठं.”*
Translation: “No, we didn’t take the child anywhere.”
This disconnect emphasises the gap in using the certificate to access consistent care and resources for the child.
Interviewer: “काबर नेल नाही?”*
Translation: “Why didn’t you take the child anywhere?”
Caregiver: “इथ आपला कॉटर वरच जन्म झाला न काही नेल नाही आम्ही.”
Translation: “The child was born here on our bed, so we didn’t take them anywhere.”
Responses like this reveal a reliance on traditional or local solutions, in part due to the perceived inaccessibility of formal systems.
The Social Stigma
While the disability certificate is essential, relying solely on it to define a child’s potential can limit perceptions and opportunities. Families are often left grappling with the dichotomy between the statutory recognition of their child’s condition and the myriad challenges that derive not only from the disability itself but also from societal attitudes, stigma, and systemic inefficiencies.
The stigma attached to disabilities further complicates the issue. While a disability certificate can serve as a tool for recognition, societal perceptions can limit opportunities for children. In many communities, children with disabilities face barriers that prevent equitable participation in daily activities. Parents often wrestle with the tension between the validation of their child’s struggles through a certificate and the continued marginalization they experience in various spheres of life.
The Promise And Limitations Of Government Schemes
The Indian government has initiated various schemes aimed at empowering persons with disabilities through financial assistance, educational resources, and employment opportunities. The Unique Disability Identification (UDID) project aims to create a national database to ensure better service delivery to people with disabilities.
While such initiatives are welcoming towards increased transparency, they still demand rigorous bureaucratic navigation that frustrates the already stressed caregivers. The process of obtaining a disability certificate can be complex, often requiring parents to provide numerous documents, such as a birth certificate and proof of residency. Medical boards varying in expertise conduct the assessments and this many times strain familial relationships with healthcare systems.
These boards consist of specialists from various fields, including orthopaedics for locomotor handicaps and mental health experts for psychological conditions. These processes are time-consuming and often alienating for parents who lack the necessary support.
Rethinking The Framework – A Call For Individualised Attention
While a disability certificate provides critical validation and access to resources, it should not define expectations for families. The complexities and realities of disabilities extend far beyond paperwork, involving emotional, social, and practical dimensions.
It is clear that a one-size-fits-all approach dictated by certificates and bureaucratic systems cannot adequately address the needs of families managing disabilities. Holistic assessments, individualised support plans, and continuous dialogues involving families, educators, and healthcare providers are essential. Policies should adapt to the nuances of different disabilities, recognising that each child’s journey is unique. Families raising children with disabilities deserve a framework that sees beyond certificates. Actively engaging their insights and real-world experiences is paramount. The emphasis should shift from mere bureaucratic validation to fostering environments where children can thrive, regardless of labels.
Ultimately, it should be about progress, empowerment, and reshaping expectations to align better with the unique capabilities of each child, ensuring that expectations are built on hope and understanding instead of confinement to a certificate.
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