Barriers to Early Diagnosis and Intervention in India

Families of children who are deaf and hard of hearing (DHH) who live in India face certain barriers in their search for intervention and education services appropriate for their child. To create sustainable change in the early diagnosis and intervention process, it is important to understand what the strengths and barriers of the current process are. The following list of barriers was compiled based on responses from 40 pre-service and in-service professionals who participated in professional development activities hosted by Listening Together.

Medical

  • Newborn hearing screening is not universal
  • Pediatricians are not aware of need of early detection
  • Lack of access to pediatric audiologists
  • Shortage of professionals (EI providers, SLPs, and teachers), with expertise in working with children who are DHH
  • Lack of comprehensive diagnosis and care related to hearing loss and other developmental concerns.

Financial

  • Hearing technologies are expensive and are not covered through insurance
  • Cost of therapy might be very high and unaffordable for parents
  • Cost of services and travel to and from center/clinic/school can be prohibitive
  • Some assistance can be available through government and private foundations, but process can be long.

Social

  • Stigma associated with having a child with disability
  • Lack of acceptance and inclusion – parents might not feel comfortable telling extended family and friends about the child’s hearing loss, child might not wear devices in social settings

Family

  • The burden of caregiving is on the mother
  • Mother might be held “responsible” for the hearing loss
  • Stress on marriage and other familial relationships
  • Not enough support for the parents (emotional, financial, etc.) or the child (having low expectations, ignoring the child)
  • Dealing with issues unique to multi-generational family units, “joint family”
  • Patriarchal values in the family might hinder action

Education

  • Difficulty finding pre-school and school placement where child will be supported
  • Large classrooms with emphasis on learning and demonstrating knowledge in only one right way
  • Hesitance to make modifications and accommodations
  • Not required to provide special education support
  • Parents have to pay for a “shadow teacher” (aide, who might not have any training)
  • Lack of collaboration within private therapists and educators
  • Even with the Persons with Disabilities Act in place, parents have few legal rights, and providers do not have the same accountability that is seen in USA

Other Factors

  • Misconceptions about hearing technology
  • Professionals might advice parents to wait for a few months/ years as some children speak later
  • Parents or other family members might look at hearing loss as a curse that can be removed by prayer, sacrifice, and other appeasement

The Listening Together team plans to address these barriers in early intervention through parent empowerment, professional development, and public awareness.