Patterns of the assessment in intellectual disability for unique disability identity (UDID): A two-year study

Abstract

Background:

Intellectual Disability poses the significant public health challenge and stigma. Notably, there has been a steady increase over the past few years in the issuance of Unique Disability Identity (UDID) cards, which are specifically designated for individuals with disabilities.

Aim:

To examine socio-demographic patterns and clinical profiles of individuals certified with intellectual disability (ID) for UDID.

Methods:

This is a hospital-based cross-sectional study observed over 2 years at a tertiary care government hospital. Data from 960 applicants assessed for ID certification were chart reviewed. Diagnoses followed ICD-10 criteria, and standardized intelligence tests determined the level of ID.

Results:

Mean age was 17.5 years. Of the applicants, 2.3% had borderline intelligence, 37.2% mild ID, 36.04% moderate, 15.8% severe, and 8.4% profound. Males comprised 63.2%, females 36.7%. Only 1.77% were employed.

Conclusion:

The UDID initiative improves access to welfare and support services for individuals with ID, highlighting the need for ongoing policy and rehabilitation efforts.

INTRODUCTION

Over the past 4 years, India has witnessed a noteworthy increase in the Unique Disability Identity (UDID) cards issuance for individuals with intellectual disabilities, reflecting enhanced awareness, access, and policy-level emphasis on disability inclusion. The UDID project, which aims to establish a National Database for Persons with Disabilities (PwDs) and provide them with a unique disability identity card, serves as a critical initiative in this regard.[1] These cards serve not only as identification but also as proof of disability, enabling access to diverse government schemes, subsidies, concessions, and welfare benefits. The system promotes transparency, minimizes duplication, and ensures uniformity across states (Unique ID for Persons with Disabilities). UDID cards can be issued by the applicant’s home district hospital or the treating hospital, depending on the case and convenience of the individual.[2]

Intellectual disability (ID) is characterized by significant limitations in intellectual functioning—reasoning, learning, and problem-solving—as well as adaptive behavior, which covers a range of everyday social and practical skills. ID originates before the age of 18 and is considered a neurodevelopmental disorder with a lifelong impact. According to the global estimates, approximately 19.4% of adults live with some disability, and 3.8% experience severe disabilities.[3] In the Indian context, the 2011 Census reported that about 2.21% of the population is living with some form of disability, with mental disabilities (including intellectual developmental disorders) comprising approximately 3%–6% of this group.[4]

Moreover, mental health disorders are the second leading cause of Years Lived with Disability (YLDs), indicating their substantial contribution to global disease burden.[5] In India, mental health challenges affect one in seven individuals and contribute significantly to economic burden, stigma, and functional impairment.[6] Despite such prevalence, access to timely diagnosis and support remains fragmented, especially for intellectual and developmental disabilities (IDD).

Historically, psychiatric disability certificates in India have largely focused on the mental illnesses and intellectual developmental disorders. A 3-year retrospective study of disability certification by a psychiatric unit found that considerable proportions were issued for IDD, with the primary motivation being access to pension and support services.[7] Such trends highlight the practical value of certification for families and individuals, particularly in navigating welfare systems.

Furthermore, demographic analyses of certified individuals offer insight into the reach, barriers, and equity of the certification process. A prior study of 231 disability certificate recipients revealed that 95.2% had IDD, primarily in the mild to moderate range. The mean age was 16.3 years, with a predominance of males (70.6%), high rates of unmarried status (98.7%), and low levels of formal education (25.1%).[8] This evolving picture of disability certification and the increasing role of government initiatives like UDID shows the necessity of inclusive policies, early identification, and systematic research to address the multifaceted needs of individuals with intellectual disabilities in India. The aim of the current study was to assess the socio-demographic profile of individuals certified with ID under the UDID program.

MATERIALS AND METHODS

This was a cross-sectional study based on the clinical and administrative record, conducted at a central government tertiary care teaching hospital located in New Delhi, which receives referrals from a wide urban and peri-urban catchment area.

Socio-demographic information was recorded using a semi-structured proforma during the disability certification process. Diagnoses were established in accordance with ICD-10 diagnostic criteria for mental and behavioral disorders[9] per WHO guidelines, the International Classification of Diseases (ICD) is used for diagnostic categorization.[10]

Assessment tools used for cognitive and adaptive functioning included

Adaptive functioning: Vineland Social Maturity Scale (VSMS),[11] Developmental Screening Test (DST).[12]

Intellectual functioning (IQ): Binet Kamat Test (BKT),[13] Malin’s Intelligence Scale for Indian Children (MISIC),[14] and Wechsler Adult Performance Intelligence Scale (WAPIS).[15]

All individuals who applied online for UDID certification under the Rights of Persons with Disabilities Act (RPwD), 2016, from August 2020 to August 2022, and were assessed by the hospital-based certification board, were included. Data collection followed a mixed approach: retrospective chart review for cases registered prior to December 2021 and prospective evaluation for cases processed between December 2021 and August 2022. After receiving Institutional Ethics Committee approval (Ref: 539 (75/2021)/IEC/ABVIMS/RMLH/690-01.12.2021), demographic and clinical data were retrieved and analyzed. Qualified clinical psychologists performed psychological evaluations. Final diagnosis and severity classification were made by the certification board using standardized tools.

Statistical analysis

Data analysis was conducted using RStudio (version 4.3.2). Variables included age, gender, family structure (nuclear/joint), economic status (BPL/APL), education, ID severity, and disability percentage. Group differences were analyzed using Z-proportion tests [Table 1], and associations between type of psychological test used and socio-demographic variables were assessed using Chi-square or Fisher’s exact tests, as appropriate.

Table 1.

Diagnostic and socio-demographic distribution of the applicants

Variables	Number [percentage (%)]	P
Diagnostic Distribution:
Borderline	23 (2.3)	<0.05
Mild	358 (37.2)
Moderate	346 (36.04)
Severe	152 (15.8)
Profound	81 (8.4)
Mean age of subjects	17.5 years
Gender: Male/Female	607 (63.2)/353 (36.7)	<0.05
Employment status: Employed/Unemployed	17 (1.77)/943 (98.22)	<0.05
Marital Status: Unmarried/Married/Divorce	921 (95.9)/29 (3.02)/10 (1.04)	<0.05
Economic status: BPL/APL	258 (26.8)/702 (73.1)	<0.05
Educational level:
Illiterate	700 (72.9)	<0.05
Primary	184 (19.1)
Higher Secondary	50 (5.2)
Senior Secondary	24 (2.5)
Graduation	2 (0.2)
Family Type: Nuclear/Joint	484 (50.4)/476 (49.5)	0.74
Category: General/OBC/SC/ST	685 (71.3)/116 (12.08)/148 (15.4)/11 (1.1)	<0.05
Intelligence Test administered*
BKT	8 (0.8)	<0.05
DST	21 (2.18)
MISIC	73 (7.60)
VSMS	765 (79.68)
WAPIS	93 (9.68)

*BKT: Binet Kamat Test; DST: Developmental Screening Test; MISIC: Malin’s Intelligences scale for Indian Children; VSMS: Vineland Social maturity Scale; WAPIS: Wechsler’s Adult Performance Intelligence Scale

RESULTS

The study assessed a total of 960 individuals over a span of 2 years, who applied for a disability certificate for ID. The average age of the applicants was found to be 17.5 years. The distribution of diagnostic categories showed that 2.3% had borderline intelligence, 37.2% had mild ID, 36.04% had moderate ID, 15.8% had severe ID, and 8.4% had profound ID. In terms of gender, 63.2% were male and 36.7% were female. Among the 960 individuals, only 1.77% were employed. Most of the participants (95.9%) were unmarried, while a small percentage (3.02%) were married and 1.04% were divorced. The intelligence tests were applied in the following percentages: BKT-0.8%, DST-2.18%, MISIC-7.60%, VSMS-79.68%, and WAPIS-9.68%. [Table 1]

Regarding the economic background, 26.8% of the individuals with ID represented from below the poverty line (BPL), while 73.1% belonged to above the poverty line (APL). The educational distribution revealed that 72.9% of the applicants were illiterate, 19.1% had received primary education, 5.2% had education till the higher secondary level, 2.5% had education till the senior secondary level, and only 0.2% had graduated. Additionally, the study included applicants from various categories: 71.3% from the general category, 12.08% from Other Backward Classes (OBC), 15.4% from Scheduled Castes (SC), and 1.1% from Scheduled Tribes (ST).

DISCUSSION

This review of 960 individuals certified for intellectual disability over 2 years, highlights important socio-demographic patterns and systemic challenges. The mean age of 17.5 years closely matches prior reports, where most applicants were children or adolescents.[8]

Most applicants had mild or moderate ID, indicating that individuals with greater functional potential are more likely to seek certification as previous study.[8] This trend could also reflect under-identification or under-referral of individuals with more severe forms of ID, who may remain confined to the home due to care needs, stigma, or logistical barriers. Compared to an earlier study from the same center which reported 48.2% combined mild and moderate ID,[16] our results suggest an increase in access or shifting trends in disability awareness.

The male predominance (63.2%) aligns with previous Indian studies[16] that report similar trends, often attributed to gender disparities in healthcare-seeking behavior, parental investment, and societal bias. This finding reflects the need for targeted outreach programs and inclusive services for female PwDs, who remain an underserved population.

The near-universal unemployment (98.22%) among certified individuals calls attention to the lack of structured vocational training, workplace accommodations, and policy enforcement in public and private sectors. Although the RPwD Act mandates job reservations, implementation for intellectual disability remains sparse. Access to sheltered workshops, skill training, and inclusive employment schemes remains minimal, especially in urban poor settings.[2,17]

The finding that over 95% were unmarried reflects profound challenges in social integration, relationship development, and autonomy for individuals with ID as previous report.[8] Social stigma, limited communication skills, dependence on caregivers, and restricted economic participation limit marriage prospects. Education-wise, the high illiteracy rate (72.9%) highlights persistent barriers in the integration of children with ID into formal schooling. Overall, the UDID system has enabled more structured, digitalized, and accessible disability certification processes. However, certification is only the first step—true empowerment depends on holistic rehabilitation, education, employment support, and community inclusion.

CONCLUSION

This study sheds light on the socio-demographic characteristics of individuals certified for intellectual disability under the UDID system. Most had mild to moderate ID, were unemployed, unmarried, and had minimal formal education. Gender disparities were also evident, with more males seeking disability certificates than females, highlighting the importance of equitable access to mental health services. The UDID program marks an important policy advance but must be integrated with comprehensive psychosocial, educational, and employment interventions to achieve meaningful improvement in the lives of persons with intellectual disabilities.

Limitations

This study is based on institutional records and may not represent individuals, who are uncertified or unable to access tertiary healthcare centers. This could lead to an incomplete representation of the population with IDs. Secondly, the focus on a specific geographic area or psychiatric unit may limit generalizability to other regions. Additionally, cultural, and regional variations may influence access to services and perceptions of disability.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.