-Rapolu Ramakrishna Murthy, Director
Manasa Institute of Child Health & Disability Studies
Ms. Rupa is a single parent of a 9 years old special kid. Her child became dystonic and intellectually impaired due to complications during delivery. She lives with her mother and her child in a metro city of India. Recently she had to get admitted in a hospital with severe typhoid fever and her mother needed to be with her as an attendant. Now the question is – who will look after the child until she gets discharged from the hospital.
The hostels and residential special schools are very scarce in the country. Most of them are run by NGOs and charitable organisations. All of them used to be filled with full of special children all the time. Many of these children are cerebral palsied or hearing impaired or visually impaired or intellectually impaired and sometimes with multiple disabilities.
Recently many of them are gradually getting closed up one by one due to several new challenges. With very busy and materialistic routine most of the parents are not visiting their children rehabilitated in the residential set ups. Some of the parents don’t even turn up to their children once in years and unfortunately some of them are even changing their addresses without informing to the hostels or residential school managements. In last case the child becomes an orphan. Another latest inhumane trend is the parents negotiate with hostel management to settle some amount cash a small piece of property during the admission itself to get rid of the child permanently; and they do this with anonymity, not being even ready to disclose their whereabouts. Organising resources is already a challenge for the NGOs to serve such children and no organisation takes risk of getting into legal issues as caring an orphan without due process is a serious legal issue.
But many parents like Ms. Rupa feel “my life could have been entirely different; if I didn’t have this child ! “.. this thought often occurs to them. Everyone needs some rest in their lives; parents of such children too. A parent may need to undergo a surgery or may go on – an official trip, “who will look after the special child?”, and it is hard to find a good and trust worthy personal care giver. Another worry is about the disruption of on-going health and rehab services. For those parents who do not want to admit their special children into a hostel and for those who are not affordable, the Respite Care is the best option.
The respite care is essential for special children as most of the parents need some break from routine. The respite is for parents and care for children. Proper respite requires motherly treatment along with professional care comprising the need based services like physiotherapy, occupational therapy speech therapy and special education etc. for the child. Ideally the respite care centres should admit the children either for day care or from one day to a week days or with a short duration till the parents return to pick them up. There is immense need for such respite care facilities in today’s society and a better alternative for hostels and residential schools.