By Nivedita Parashar:
Children are the innocent future of every society. Countries around the world subscribe to their pre-eminent right to be nurtured and to be happy. And yet, in our 70-year-old India, one group – children with intellectual and developmental challenges (CwC) – find their needs unattended and their future uncertain.
Intellectual and developmental challenges include conditions such as autism, cerebral palsy, down syndrome and intellectual disability. The lack of research on children with these challenges has left them on the margins of policy and academia. The number of CwC in India is seriously under-counted, which has also led to their underestimation as a population group.
A few studies discussing the lived experiences of children with such conditions are available. In recognition of the need for empirical evidence on the social and service barriers faced by CwC and their parents and caregivers in accessing specialised services in Delhi, the Amrit Foundation of India collaborated with Amaltas on the Patang Project. The evidence gathered shines a light on the extent of denial of services and opportunities for CwC. It also helps us understand what needs to change and how to level the playing field for the CwC.
The Patang Project found that in Delhi, 75% of the CwC surveyed turn to government institutions to avail services. The onus is thus on the government to ensure accessible and quality services. However, service providers in the field argued that the government is simply not doing enough to provide good quality services to CwC. This allegation is corroborated by evidence, in that the Service Index measuring quality perception is much lower for government institutions than for private service providers and non-government organisations. The financial burden posed by the special needs of the CwC makes it difficult for their parents and caregivers to switch to better quality services. Nearly 70% of respondents for the project cited finances as a crucial barrier to accessing services. As many as 99% parents and caregivers of CwC rely on their personal savings and earnings to avail services, making their lives precarious and reducing the number of services accessed, low.
Coping with challenges has tangible consequences for caregivers’ lives. There is a financial cost – payments for services and transportation; a social cost – the experience of stigma and discrimination; and the emotional cost – the sense of despair. The amalgam of these costs shape the interactions of CwC and their caregivers with the society. Not only are CwC and caregivers sapped by the financial burden, but find themselves in a unaccommodating environment constructed to favour able bodied people. CwC and caregivers feel isolated. Stigma and discrimination leads caregivers to conceal the child’s condition and remain in denial as long as possible. This denial has a damaging effect on the CwC as they are unable to benefit from interventions at an early juncture.
The study found that in a knowledge vacuum, parents and caregivers do not know what to look for, or whom to approach. Most parents and caregivers are forced to rely on word-of-mouth to make crucial decisions regarding their course of action. When services are sought, they are just not available or accessible leading to poor utilisation. This is far worse for the poorest and for those with especially severe challenges. Not only do caregivers face crises at their workplace, they also lack support from all but the most immediate family. The neighbourhood, although not outrightly disruptive, is rarely supportive and prefers to avoid CwC.
Our society’s inability to create space for CwC has diminished the opportunities for CwC to learn and participate in their environment. The Patang project found that four out of 10 CwC between 6-18 years are out of school. Lack of easily available information on entitlements means that over 50% of the children requiring assessment have not seen a psychologist and more than 60% people with challenges do not have a disability certificate. This is a significant impediment to better outcomes, since a disability certificate is the gateway to many entitlements and services.
CwC face a world full of challenges. And yet if CwC could get the same level of support that other children do, the results might be remarkable. There are many examples that show that if CwC receive the care that they need, they can hold jobs, run businesses and become productive members of society. The Patang Project is a step towards ensuring a world full of challenges transforms into a world full of opportunities for CwC. For this to happen, we need good policies informed by high quality research and even moreso, by practice.
We look to our lawmakers, policy-setters, government services, civil society and service providers to ensure that governments take action based on legislative and policy changes. Wider awareness can encourage a groundswell of public support for the issues faced by CwC. These actions can transform the lives of parents and caregivers by empowering them with the information they need to get better services for their children.
It is time that we levelled the playing field.
(Amrit Foundation of India focuses on advocacy for the rights of children with challenges. Amaltas is a research and consulting organisation working on development issues and is based in Delhi. The Patang Project book was launched in October 2017 by Ms. Stuti Kacker, Chairperson, National Commission for Protection of Child Rights, India. Purchase your copy here.)