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Patang Survey

 

 

A state with the best of provisions and services is struggling to truly include its children with challenges; this illuminating study apprises you of the heartrending struggles of the families of young children with challenges and measures that can make their lives less difficult.”
Anil Baijal, Lieutenant Governor of Delhi

In order to create a level playing field, persons with intellectual and developmental challenges need specialised services to help them overcome their challenges. However, persons with intellectual and developmental challenges and their caregivers face a number of barriers in getting the services they need. Patang denotes the aspirations of children and their families to reach for their fullest potential. It seeks to capture what could be done to make this possible.

Our previous consultations have pointed to a number of challenges including a lack of trained professionals, a dearth of specialised vocational and occupational therapy, stigma and discrimination, and low awareness amongst and training for caregivers. But, there have been no studies carried out to provide empirical evidence on the extent to which issues such as these prevent access to services or the interplay between service access and social characteristics, or the strategies that caregivers use to cope in an environment of lack.

Reliable data on barriers on service access is crucial for government and service providers to effectively increase the provision and accessibility of services, and to target the most marginalized groups, for inclusive development of persons with intellectual and developmental challenges.

The Patang Study aims to:

  • Understand the interplay of social factors as they relate to access to and utilisation of specialised services.
  • Ascertain the extent to which specialised services are available to, accessible for and utilised by PwC and their caregivers.
  • Document the narratives of PwC and their caregivers with a view to learning about the resilience strategies adopted by them to deal with their situations.

To deliver this study, Amrit partnered with Amaltas, a research and development consulting organisation with expertise in carrying out mixed methods studies among marginalised groups, and Sigma Research and Consulting, an organisation with substantial experience in social research and data collection.

Findings of the Patang Project shed light on the extent of denial and helps us to understand what needs to be changed – and how – to ensure better services for children with challenges. The key highlights of the study reveal that 4 out of 10 children with challenges between 6-18 years are out of school; more than 60% people with challenges do not have a disability certificate; nearly 70% of respondents cited finances as a crucial barrier to accessing services; and almost all (99%) of caregivers have to rely only on their own earnings – without financial support from the state or NGOs – to care for their young children.

The Patang Project book was launched by Ms. Stuti Kacker, Chairperson, National Commission for Protection of Child Rights, on 27th October 2017.