Availing services for developmental disabilities: parental experiences from a referral center in developing country

To identify the problems faced by parents of children with developmental disabilities in availing rehabilitative services and to find their satisfaction level.

This study was carried out at a Child Development Clinic (CDC) located in Northern India. Children with developmental disabilities, who were availing services at CDC for at least last 3 mo and had at least 3 follow-up visits, were enrolled. A questionnaire pertaining to the socio-demographic profile, problems faced in availing services and satisfaction level was filled by the parents of the enrolled children.

During the study period, 161 parents filled the questionnaire. 77.6% had some problems in getting the services, the major being difficulty in commuting (50%) and financial constraint (21.7%). More than 80% parents use public transport to reach CDC with 19% travelling more than 50 Km. 29.8% had difficulty in bringing their child to the clinic, either due to severe behavioral problems or physical disability. However, majority of the families were well satisfied with the services as 95% of them graded their satisfaction level at 3 or more on the scale of 0-5.

Parents of children with developmental disabilities face many problems in getting rehabilitative services. They travel long distances, face hardships in carrying their child, and lose their day's earnings, apart from spending time and money for their child's therapy. However, most of the parents are well satisfied with the services.