In their journey in caring for persons with disabilities, caregivers – who could be immediate family members, close friends or dedicated professionals – face their own share of hurdles. From challenges in taking care of those in need to accessing benefits provided by the government, caregivers have to jump through several hoops.
Today, while on the one hand many institutions have come up in the city that provide care to persons with disabilities and build a support system for the family members, there still exist institutions where children with disabilities are denied admission, who demand more fees and the parents are frequently contacted anytime the child needs help. Finding an institution or school which suits their child’s needs is a common challenge.
Ordeal of finding school
Archana Bathija, whose son has an intellectual disability, moved to Bengaluru a few years ago. She said it was “a big problem” to find the right school for him. “I had to change a few schools. While some did not take care of him properly, some outright denied admission because he was a teenage boy. At one of the schools, the situation was so bad that if he had a cough and cold and sneezed, they would call the parents to go and clean the cupboard and tables,” she said, narrating her ordeal. Finally she found Association for the Mentally Challenged (AMC) where he was taken in without questions.
The mother of a child with Down syndrome said the first challenge is to figure out how to deal with a child who is born with a disability. Parents of such children stress upon the need for creation of more awareness in health care facilities to help them make informed decisions about the kind of schools, vocational options and medical care available.
“There is a government pension scheme for children with disability, but what they need is workshops and vocational guidance which would be the more sustainable options,” said Gayathri, a caregiver at the AMC, which is organising a consultation on new approaches to support caregivers and their families on December 3 to mark World Disabilities Day.
Caregivers in professional facilities dedicate their entire day to take care of people of all age groups. “With persons with physical disabilities, they need assistance mostly for mobility. But those with intellectual disabilities need someone with them throughout the day. Especially during Covid, with the barriers of lockdowns and lack of human contact, it was very difficult to take care of such persons,” explained Arpuda Rajan, Zonal Secretary, Karnataka State Disabled and Caregivers Federation.
Difficulty in access
Most people who work in the caregiving sector say that although there are several programmes like pension, health insurance and transport benefits introduced by the government for persons with disabilities as well as caregivers, there is no ease of access.
“Children with disabilities live with their families and these families will have to put in extra efforts as these children tend to be dependent on them for a longer time, sometimes all their lives. So, they require more support in terms of pensions, insurance, employment reservations, sheltered workshops and vocational training. There should also be facilities where these children can stay for the rest of their lives, even when the parents are not there,” said Dr. Srinivas Murthy, retired professor of Psychiatry, NIMHANS, who also creates workshops and collaterals for caregivers at AMC.