The present study was conducted over a ten month period in 2012, to identify people with disability and ascertain their employment and health status, and access to health care and health service utilization. Their findings were compared with a group of people without disability identified through a population-based survey and disability records.
One district each with poor social indicators from Andhra Pradesh (Medak district) and Karnataka (Bidar district) were included in the study. One administrative division of comparable population was randomly identified in each district (Sangareddy - Medak; Bidar taluka - Bidar).
The sample size was estimated using a power of 90%, significance level of 0.05, 95% confidence intervals and a difference of 25% in health care access among people with and without a disability. The estimated sample size was 1053 people with disability and an equivalent number without a disability (comparison group).
The study used a two stage process to identify people with disability and age and sex-matched people without disability. In the first stage, key informants (KIs) were recruited from the study area and trained to identify people with disability. The KIs were trained using a specially designed and pretested flip book with pictorial depictions of the different impairments on identification of persons with disability, based on visible impairments/abnormalities and a brief history. KI were also oriented to the Persons with Disabilities Act (PWD Act) India, 1995 and on the disability certificates issued by the government agencies. The PWD Act includes visual impairment, hearing impairment, locomotor impairment/orthopedically handicapped, mental illness/handicap, including persons with multiple disabilities/impairments. This was important as the KI had to list persons with disabilities in their village based on the comparison with the flip book and the availability of the disability certificate. In Andhra Pradesh, the government has established a database to capture information on all persons with disability. This is called SADAREM (Software for Assessment of Disabled for Access Rehabilitation and Employment). All persons with disability who are issued a disability certificate are listed in the SADAREM database. In Karnataka information on persons with disability is available with the department of women and child development at the district headquarters.
The training was conducted in a village within the study district. All KI were transported to the training site. The duration of training was one day. Approximately 20 KIs were trained per selected block (approximately 1.5-2 persons per selected village) and their participation was voluntary, without material reward throughout the process. Each KI covered a population of between 2000–3000 over a period of 4 to 6 weeks, going house to house. At the end of 6 weeks the KI provided the list of people with disability to trained field investigators. The field investigators visited each of the persons listed by the KI. They reconfirmed the findings of the KI and simultaneously identified age and sex matched people without disability in the neighbourhood. All the identified individuals were then administered a questionnaire schedule to elicit responses regarding health care issues and employment status, in addition to recording basic demographic data. The questionnaires were translated into the local languages (Telugu and Kannada) and were pretested before use. The disability status was also ascertained from the disability certificates and disability pension records available with the people with disability. Wherever necessary, the help of the local disabled people’s organization (DPO) was solicited. In households where the person with disability could not respond due to disability, an adult responsible member of the household was asked to respond to the questionnaire (proxy respondent).
All field investigators and KI’s were people with disabilities.
In the second stage, a team of a medically trained physician and a therapist visited all listed individuals (people with and without disability) at home to confirm the diagnosis and examined them in detail for their underlying impairment and for re-ascertaining the information collected by the field investigators.
Disabilities included in the study
Since the study used KI for the initial listing of people with disabilities, it was possible to include only those impairments which were visible to the external eye or could be picked up through a short history. The following impairments were included in the study:
Physical impairments: Club foot, cleft lip, cleft palate, cerebral palsy, Down’s syndrome, microcephaly, phocomelia, amputated limb, burns, muscular dystrophy/atrophy, leprosy, elephantiasis, post-polio residual paralysis, congenital limb deficiencies, rickets and spinal cord injuries
Visual Impairment: Bilateral severe visual impairment or blindness
Hearing Impairment: Bilateral severe/profound hearing impairment
People with disability were defined as those who suffered from one or more of the impairments as listed as these impairments are responsible for disability due to activity limitation and effect on social participation.
All the key informants were persons with disability. Since the purpose of the study was to compare the experiences of persons with and without a disability and not to measure prevalence of disability, none of the investigators or key informants were included in the study sample to eliminate any type of measurement bias.
The ethical approval for the study was obtained from the Institutional Ethical Committee at Indian Institute of Public Health-Hyderabad.
Written informed consent was obtained from all the study participants.
The data base was developed in MS ACCESS and STATA 12.0 was used for data analysis. The chi-square test was used for associations and logistic regression was used to determine the odds for associated variables.
The age groups were categorized to reflect experience of young adults (18–29 years), middle age productive group (30–49 years), older less productive age group (50–64 years) and elderly less/non-productive age group (65+ years).
Steps were taken to assure the quality of data collected. The flip-book was pretested with the general population before being used in the study. A pilot study was conducted in two clusters which were not part of the main study. During the training, KI were made to compare their findings with the trainers and those who needed retraining were provided the same. During the entire duration of the study, the data collected by KI was verified by a team of trained senior health personnel well-versed with disability. All data was cross-checked in the field setting before being transmitted to the data entry station. A random check of the filled forms was undertaken at the data entry station by a senior investigator.
All participants were provided referral linkages to tertiary care centres for treatment wherever required. Transportation was organized for the people with disabilities to reach the tertiary centres. Treatment provided included surgery and provision of assistive devices.