|Year : 2016 | Volume
| Issue : 1 | Page : 37-39
Awareness among primary caregivers of the differently abled children on Indian legislation: A cross-sectional study
Deepa Chanbasappa Metgud, Lecrissa Hyacinta Fernandes, Shruti Nagesh Naik
Department of Pediatrics, KLEU Institute of Physiotherapy, Belagavi, Karnataka, India
|Date of Web Publication||10-Aug-2016|
Deepa Chanbasappa Metgud
KLEU Institute of Physiotherapy, JNMC Campus, Nehru Nagar, Belagavi 590 010, Karnataka
Source of Support: None, Conflict of Interest: None
Aim: The present study was undertaken to assess the level of awareness on Indian legislation among the primary caregivers of the differently abled children.
Methods: A sample of 120 respondents from various centers attending services of day care centers, clinical setups, and educational institutes for their children was administered a thirty-item questionnaire, categorized into awareness of legislations, awareness of rights, concessions and benefits, and life cycle needs.
Results: The results showed a significant level of awareness on Indian legislation among the primary caregivers depending on the age group of the respondents, gender, and the educational levels with P < 0.05. The educated male respondents were better aware than the females in the category of ≤10 th standard and Pre-university college (PUC) educated. Based on the age, respondents in the older age group were adequately aware compared to the respondents in the younger age group.
Conclusions: There is a need to promote awareness among the primary caregivers of the differently abled children to enable them to receive optimum benefits. Different modes of communication should be explored to overcome the barriers and reach the illiterate.
Limitations: The study included children with multiple disabilities. The children were unevenly distributed as well as drawn from different centers.
Keywords: Awareness, differently abled, legislation, primary caregivers, rights
|How to cite this article:|
Metgud DC, Fernandes LH, Naik SN. Awareness among primary caregivers of the differently abled children on Indian legislation: A cross-sectional study. Indian J Cereb Palsy 2016;2:37-9
|How to cite this URL:|
Metgud DC, Fernandes LH, Naik SN. Awareness among primary caregivers of the differently abled children on Indian legislation: A cross-sectional study. Indian J Cereb Palsy [serial online] 2016 [cited 2017 Nov 17];2:37-9. Available from: http://www.ijcpjournal.org/text.asp?2016/2/1/37/188158
| Introduction|| |
Differently abled persons are most neglected not only in the society but also in the family and more often an object of pity. Differently abled children and their families constantly experience barriers to the enjoyment of their basic human rights and to their inclusion in society.  Their abilities are overlooked, their capacities are underestimated, and their needs are given less priority. Yet the barriers they face are more frequently as a result of the environment in which they live than as a result of their impairment.
Care provided to the differently abled children largely depends on awareness, beliefs, concerns, and socioeconomic status of the community. In the past two decades, India has witnessed a quantum leap in disability movement resulting in paradigm shift in the polity and affirmative actions. Three important legislations, namely, Rehabilitation Council of India Act, 1994, People with Disability (PWD) Act, 1995, and National Trust Act, 1999, have been enacted and the Government of India has made provisions for several direct and indirect benefits of the PWDs and has reduced the burden over their families. 
Disability is an evolving concept, and that disability results from the interaction between persons with impairments and; attitudinal and environmental barriers that hinder full and effective participation in society on an equal basis with others.  Awareness on disability is not about an individual becoming aware of his/her impairment. It is a collective identity among the community. 
| Methods|| |
An observational study (survey) was carried out to assess the level of awareness on legislation among the primary caregivers of the differently abled children after obtaining ethical clearance from the Institutional Ethics Committee. The survey tool was a closed-ended questionnaire emphasizing on the various aspects of the laws and acts related to the rights of the differently abled children with options of "YES" and "NO" responses. The tool was built on the social, medical model of disability to reach the target result. The thirty-item questionnaire was categorized into awareness of legislations, awareness of rights, concessions and benefits, and life-cycle needs. One hundred and twenty primary caregivers of the differently abled children were recruited using convenient sampling whose children were registered in special schools, day care centers, children receiving intervention from various specialities and counseling as well. The chosen primary caregivers were informed about the purpose of the study and those who consented to participate were included in the study. As the questionnaire was in English, the questions were translated verbatim in their mother tongue to those who did not know English. The data were collected over a period of 6 months and a total of 54 fathers, 63 mothers, and 3 grandparents participated in the study.
| Results|| |
Maximum respondents belonged to 21-30 years of age with the majority being females and minimum belonged to the age group of 41 years and above [Table 1].
Among the 120 differently abled children, 84 were males and 36 were females (males more than females in the study population). The mean age of male children was 5.83 ± 4.86 and of female children was 4.98 ± 3.69.
Nearly, 63.3% children had cerebral palsy, 13.33% were mentally retarded, 10% had autism and attention deficit hyperactivity disorder, and 5.83% had genetic disorder. Visual and hearing impairment accounted to 4.17% and 3.3% were musculoskeletal disability.
The mean total disability awareness score for graduates was more compared to the respondents with educational level ≤12 th with significant at P < 0.05 (P value-0.0012).
According to the educational status, the above table proved significant in the following aspects on importance to education of the disabled (0.0050), awareness on the national policies (0.0010), awareness on schemes and services (0.0500), awareness on special employment exchange (0.0040), awareness on provision to address sexual abuse (0.0320), and protection against discrimination (0.0080).
| Discussion|| |
According to the educational status, the awareness level was significant in the age ranges of 41+ years and above. About 65.83% of the respondents in this age group were aware about the rights to education (education law) which can be attributed to parents' motivation to know more about the chances of receiving support and improvement on the condition of their children in early years, and therefore, tend to seek more information regarding every aspect related to their child and future. Whereas 9.17% were also aware of health law, family law, and income tax concessions.
Nearly, 36.68% of the respondents belonged to the category of primary education and 18.33% belonged to the category of graduates and postgraduates. These results are comparable to a study done on awareness among family members of children with intellectual disability on relevant legislation in India, wherein the percentage of the respondents with primary education was lower in their study than our study. However, graduates' percentage was more in their study than our study.
The present study also showed a positive result regarding the awareness about the disability certificate (62.50%), which was similar to the results of the prior study with an outcome of 59% to 62%. In addition to it, our study also analyzed the utilization of the benefits and concessions by the primary caregivers for their children in day-to-day activities which was about 19.17%, the reasons for which could be due to lack of necessity to apply for disability certificate, some were denied of the certificate due to improper documents, and some could not avail disability certificate as their child was too young or had an improper diagnosis or were in the stage of developing disability.
Primary caregivers had less awareness on the procedures that provided protection against discrimination, least being in the younger (21-30) years' age group which could be attributed to misconception and beliefs related to the differently abled children. Other reason could also be that they consider them as an asset and their ignorance is certain. Regarding the national policies, schemes, and services, again the graduates were better aware than the illiterates and below PUC level educated respondents, which showed almost same results as the previous studies on awareness of legislation for differently abled.
| Conclusions|| |
The study showed that educated people had better awareness on Indian legislation for the differently abled than the less educated, in which the males were better aware than females. This indicates that the nation needs to awaken for the development of the differently abled.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Baxipatra D. Rights of the Differently Abled in India: Law, Cases & the Reality. Cases and the Reality; May 18, 2013.
Mishra AK, Gupta R. Disability index: A measure of deprivation among disabled. Econ Political weekly. 2006:4026-9.
Mohit A. Human rights for PWD. In: Mohanpatra CS, editor. Disability management in Indian challenges and commitment. 1 st
ed. secunderbad: NIMH; 2004. p. 287-306.
UNICEF. Promoting the rights of children with disabilities. Innocenti Digest. 2007;13:1-68.