1 in 8 children in India (aged 2 to 9 years) is estimated to have a developmental disability and is likely to experience adverse socio-economic conditions such as poverty, violence, psychological stresses, and inequitable access to education, healthcare, livelihood, and social participation. Developmental Disabilities (DD) arise from issues in the nervous system’s development that may negatively impact cognitive and motor performance, vision, hearing, speech, or behaviour.
The severity of their physical, cognitive, and socio-emotional challenges, coupled with societal exclusion and negative cultural perspectives, make them some of the most vulnerable and stigmatised children in the world, often needing ongoing care, with some requiring lifelong support. The UNICEF-recommended framework underscores the role of parents or primary caregivers as one of the most critical factors influencing the quality of life experienced by children with DD.
Research suggests that parents of neurodivergent children face more challenges compared to those of neurotypical children, as they are required to fully understand the disability, access therapy, apply interventions, and manage financial responsibilities while confronting social discrimination and cultural biases. These result in a higher prevalence of socio-economic hardships among this group, which also negatively hampers their mental well-being.
Given the complexity of their experiences, it is essential to understand parents’ journeys, identify their support needs, and design and amplify suitable interventions. Ummeed CDC is a non-profit organisation with the objective to help children with, and at risk of, DD be included in society and reach their full potential. They enlisted Sattva Consulting to conduct a study and identify the support needs of parents and caregivers of children with DD, and the role played by the Family Resource Centre (FRC) set up at Ummeed in addressing these needs. We conducted a qualitative study over 4 months, adopting a participatory approach, and interviewed a diverse range of 50 stakeholders such as parents, caregivers, developmental paediatricians, therapists, and others, to gain a 360º perspective. This study also aims to bridge the existing gap in the literature on parent’s journeys in raising a child with a DD and their support needs, specifically in the Indian context. Read it here.
A parent’s journey in raising a child with DD can be understood as unfolding across different stages — receiving a diagnosis, accessing interventions, and navigating the schooling system. These phases are often sequential, but aspects such as coping with family dynamics, social participation, and addressing future concerns tend to persist across them all.
The study, conducted on families of children with DDs highlights challenges such as a lack of adequate awareness and knowledge, coupled with cultural perspectives and shortcomings of the healthcare system, significantly impacted parents’ ability to recognise differences in their children and receive a diagnosis in time. Furthermore, a lack of support from spouses and socio-cultural influences that stigmatise developmental disabilities intensified mothers’ feelings of loneliness and the perception of being their child’s sole advocate. They also had to navigate traditional family dynamics and faced resistance when trying to secure appropriate interventions for their children. Subsequently, the absence of clear guidance surrounding interventions often left parents adopting a “trial and error” approach, adding to their stress and uncertainty.
The FRC at Ummeed is built on 3 pillars — Advocacy, Support, and Guidance. Activities such as the Know Your Rights workshop, मी-time sessions, Support Groups, Meet The Expert sessions, Family Day, and informational brochures, among others, are centred around enhancing parental capacity to care for their children and promote their mental well-being.
The primary incentive for a caregiver to connect with FRC was gaining information to be better equipped to support their children. Their areas of concern typically surrounded topics related to their child’s development and welfare, such as information about therapists, schooling, and parenting tips. Through sessions such as Know Your Rights, parents gained information about governmental support such as the UDID card and the Niramaya Health Insurance scheme. Parents found these sessions to be instrumental, providing sufficient information for them to be able to access the support offered by the government.
Parents reflected that through the support services offered by the FRC, they gained unintended personal benefits — such as internalising the importance of self-care and forming a community that enriched their personal lives and eased their mental load. A mother highlighted:
“It was only at the FRC that I understood the importance of taking care of myself. A key learning was that I don’t have to take up every responsibility and should take support from my family too. I also learned how to manage my time so that I can take out some for myself.”
The मी-Time programme conducted by FRC encourages caregivers to take time out for themselves for their own enjoyment and unwind over leisure and self-care activities. Sessions include yoga, crochet, dance, mehendi, and more for free. One mother details her experience, saying:
“The FRC not only imbibes the importance of self-care but also provides avenues through which we can practice de-stressing and self-care. These services are offered for free, otherwise we would not be able to access them. It is very difficult for us parents to take out time, we are always worried about our children. But since they also have volunteers to care for our children while we attend these sessions, we can enjoy ourselves stress-free.”
Parents also stressed the importance of connecting with others who are further along in their journey, as it helped them gain relevant parenting tips. Newer parents, who are prone to feeling lost and burnt out as they navigate through various therapies, reported feeling reassured, with one father sharing:
“My son has ASD and through the FRC I connected with a mother whose son also had ASD. I benefited from the advice that she offered as she could completely relate and resonate with our realities.”
Read the report to learn more about parents’ journeys and how Ummeed supports their needs.
