Braving the odds — parents of differently abled children in Kerala

Why in the News

A decade after Parliament passed the Rights of Persons with Disabilities Act, 2016, parents of differently abled children in Kerala continue to carry a caregiving burden the law has not eased, according to accounts gathered from families, care home organisers and rehabilitation professionals in Kozhikode. The article documents parents facing career loss, mental health strain, social stigma and, in extreme cases, deaths linked to caregiving despair, alongside gaps between the schemes that exist on paper and their reach on the ground. Officials and caregivers agree institutions and laws exist in adequate number, but say implementation and follow-up are what fail the families the law was meant to protect.

What burden do parents of differently abled children carry, and how does it change over a lifetime?

1. Grief is staged, not a single event: A rehabilitation expert identifies denial, anger, an attempt to escape the situation, depression and eventual acceptance as the stages every such parent passes through.
2. The burden intensifies as the child becomes an adult: Once a child clears Class XII with assistance, parents shift to worrying about adult life, and over 20 cases of parents attempting to kill their adult children or end their own lives were recorded in Kerala in the past year alone.
3. Mothers carry a disproportionate share: Around 34 percent of parents of girls worry specifically about their daughters’ safety in their absence, and menstrual hygiene management adds to caregiver fatigue and sleeplessness.
4. Careers and social lives are given up: A survey of 200 parents by a private care home found at least four PhD holders and 30 postgraduates among them unable to pursue careers, most also avoiding social events.

Why do government schemes for the differently abled fail to reach their intended beneficiaries?

1. Reach, not availability, is the gap: A care home organiser says India has enough institutions and laws for the differently abled, but existing schemes, such as the pension for differently abled persons, are not tracked for how many eligible people actually receive them.
2. New schemes launch without evaluating old ones: Projects are announced without follow-up or evaluation of whether earlier schemes worked, according to a care home convener who argues empowering existing schemes matters more than launching new ones.
3. Departments work in silos: A convener calls for convergence between the Departments of Education, Health and Social Justice, starting with including the real-life problems of the differently abled in the school curriculum rather than only success stories.
4. A parent-centric policy design has its limits: A Social Justice department official concedes the existing policy framework itself is built around parents, leaving less structured support for the child’s independent adult life.

What alternatives are families and the government building to reduce dependence on parents?

1. A parent collective is building independent housing: A group of parents pooled funds to build 25 houses of 800 sq. ft. each at Keezhariyur in Kozhikode, along with vocational training centres, therapy units and a health centre, so children with intellectual disabilities can live even without their parents.
2. Respite care has been introduced in response to caregiver strain: The Kerala Social Justice department launched three ‘Anpu’ homes in August, letting differently abled persons and their parents stay up to seven days, twice in six months, so caregivers can attend to emergencies or travel.
3. Existing government facilities remain concentrated in a few centres: Northern Kerala’s government facilities include a Regional Intervention Centre and Autism Centre at Government Medical College Hospital, Kozhikode, and a District Early Intervention Centre at Government General Hospital, Kozhikode, but officials admit other districts lack comparable facilities.
4. Vocational reskilling is proposed for adult independence: A former Samagra Shiksha Keralam official suggests deploying persons with intellectual disabilities in mechanical jobs after proper training, converting disability into an employable skill rather than treating it only as a welfare category.

Challenges to disability welfare delivery in Kerala

1. Care-giving burden has no institutional substitute: Families rely almost entirely on parents, especially mothers, for lifelong care, with no state mechanism assuming that role once parents age or die. Eg. Parents in Kerala report at least 20 cases in a year of attempting to end their own or their child’s life over anxiety about the child’s future without them. Fix. Expand community living models like the Keezhariyur collective through state co-funding, so independent living is not dependent on a single family’s ability to pool resources.
2. Social stigma persists despite legal protection: Differently abled children are still kept away from social events such as weddings, undermining the dignity and inclusion the 2016 Act guarantees on paper. Eg. Caregivers report attempts to exclude differently abled children from family weddings in Kerala. Fix. Link disability welfare scheme disbursement to periodic community sensitisation drives conducted by the Social Justice department.
3. Exploitative “magical cure” claims target desperate families: Parents seeking a cure for their child’s condition fall prey to unproven treatments and sell property in the process, delaying appropriate care. Eg. A rehabilitation professor in Thiruvananthapuram reports parents selling property believing false claims of a cure. Fix. Empower District Early Intervention Centres to issue verified treatment pathway certificates that families can use to screen out unproven providers.

Conclusion

A decade of the Rights of Persons with Disabilities Act has not closed the gap between the schemes that exist and the support caregivers actually receive, leaving Kerala’s parents of differently abled children to build their own alternatives, from community housing to informal support networks, while government follow-up on existing entitlements remains the piece still missing.

Back2Basics

1. Rights of Persons with Disabilities Act, 2016: An Act of Parliament that replaced the earlier 1995 law, recognising 21 categories of disability and mandating equal opportunity, non-discrimination and full participation for persons with disabilities.
2. Administering ministry: The Act is implemented by the Department of Empowerment of Persons with Disabilities under the Union Ministry of Social Justice and Empowerment.
3. Core entitlements: It guarantees reservation in government jobs and higher education, free education for children with benchmark disabilities, and accessibility in the built environment, transport and information.
4. National Trust: A statutory body under the Act’s parent ministry, chaired by the District Collector at the local level, mandated to support persons with autism, cerebral palsy, intellectual disability and multiple disabilities.

Matching Previous Year Question

PrelimsPYQ.csv: “Which of the following statements with regard to the persons with disabilities in India is/are correct? 1. The Rights of Persons with Disabilities Act, an Act passed by the Parliament of India in…” (Microtheme match on Disability Rights, Subject: Governance).