Every night before she sleeps, a mother in Bengaluru says she looks at her adult son with a mild intellectual disability (ID) and asks herself the same question: “Who will hold his hand after I am gone?”
For years she has managed his medications, reminded him to bathe, accompanied him to appointments and shielded him from a world she fears may not always be kind. What keeps her awake is not the work of caregiving today, but the uncertainty of tomorrow.
That haunting anxiety lies at the heart of a new qualitative study led by Dr. Lakshmi Jogi, along with Dr. Thanapal Sivakumar, Dr. Hareesh Angothu, Prof. Thomas M. Kishore of the Departments of Psychiatry and Clinical Psychology at the National Institute of Mental Health and Neurosciences (NIMHANS), and Dr. Deepak Jayarajan of Hunter New England Mental Health Services. The researchers explored the future caregiving concerns and plans of parents of adults with mild intellectual disability.
Published in the Indian Journal of Psychiatry, the study interviewed both parents of eight adults—four men and four women—with mild intellectual disabilities. Their stories reveal a deeply emotional reality shared by many Indian families: parents are ageing, but their children may continue to need support for decades.
“My biggest fear is not death. It is what will happen to my child after me.” That sentiment echoed across interviews.
Many parents said they had accepted the lifelong responsibility of caring for their child. What they struggled to accept was the possibility that no one else would care with the same patience, vigilance and affection.
One father told researchers that he had begun setting aside money and property for his daughter but remained unconvinced that financial security alone could protect her.
“We can leave behind money, but we cannot leave behind our presence,” he said, as per the study.
Another mother worried that her son was too trusting and could be easily manipulated.
“He does not understand when someone is taking advantage of him. Today I am there to protect him. Tomorrow who will protect him?”
The study found that parents’ foremost concern was identifying a reliable guardian. Most hoped that siblings would eventually assume responsibility, but many admitted they were uncertain.
“My daughter says she will look after her brother,” one parent said, “but she has her own family, her own children, her own life. I do not know what the future will bring.”
Several parents feared that changing family structures, migration and financial pressures could weaken traditional support systems.
For parents of women with intellectual disabilities, concerns about safety were especially intense.
“I worry about her safety all the time,” one mother said. “As long as I am alive, I can watch over her. After that, who will make sure no one harms her?”
The researchers found that fears of abuse, neglect and exploitation were common, particularly among parents whose children required close supervision.
Many parents in the study spoke about their own declining health.
“Earlier I could take him everywhere,” one father said. “Now even climbing stairs is difficult. Sometimes I wonder whether I will become dependent before he does.”
Researchers noted that parental anxiety increased as carers aged and began confronting their own physical limitations.
Contrary to common assumptions, the study found that most families had made some financial plans. Parents had accumulated savings, purchased insurance or set aside property for their children.
Yet nearly all felt that money could not substitute for trustworthy caregiving.
“What my son needs is not just food and shelter,” one mother said. “He needs someone who understands him.”
The researchers pointed out that most international research on future caregiving comes from high-income countries, where supported housing, community living arrangements and formal caregiving services are more widely available.
India has made important strides in disability rights, education and rehabilitation. Yet the study suggests that future caregiving remains one of the least-discussed challenges facing families of persons with intellectual disabilities.
Unlike many high-income countries, where supported living arrangements, respite care and structured guardianship services are more widely available, Indian families continue to shoulder most long-term caregiving responsibilities on their own.
As India's population ages and life expectancy increases for persons with intellectual disabilities, the researchers argued that strengthening long-term caregiving systems has become an urgent public health and social policy priority, ensuring that families are not left to shoulder this responsibility alone.
