Data on developmental delays and disabilities in the developing world- A case study from India

Case study

It is a typical day in a low-cost urban clinic in India. A man walks in carrying an eight-year-old boy in his arms. The family has made a 24-hour journey to the city to find a cure for their boy. Seemingly normal at birth, the child never attained head holding. The parents hoped the child would 'one-day' walk or crawl, but it never happened. Born in a local hospital, no one ever explained developmental milestones or checked the baby for any obvious signs of delay. At the immunization clinic, no one bothered to refer the child to a specialist. The community health workers were equally oblivious to the situation. A systemic failure to screen and diagnose, left the parents wondering what is wrong with their child.

Today, after eight long years, the parents continue to sit helplessly, with an eight-year-old son cradled in their arms, hoping for divine intervention. In a day or two, the family would go back to their ancestral village, where health services remain woefully inadequate.

That's the story of receipt and end of care.

This is a snapshot of what it is like to have a son or daughter with disabilities in India. 'Hope,' a 'lifelong search for a miracle cure,' an 'endless optimism,' and eventual 'resignation' is what defines the lives of millions of families caring for children who are disabled, who if identified early could have benefitted from early intervention.

Historical journey of children who are delayed and at risk of disability

Significant efforts have been made to reduce child mortality globally through the various international development efforts. Children are living longer, and India is no exception to the pattern. In the1990's, India had the highest rate of infant mortality in the world. However, by 2015, under five death reduced to 5.9 million from a whopping 12.7 million per year in 1990.

This increased survival of children implies that those born with difficult birthing complications, or who are malnourished and underweight or are micronutrient deficient, some of the potential risk factors for developmental delays and neurodevelopmental disorders (DDs & NDs), now have an increased chance of survival. Children with delay and disabilities are emerging public health and a human rights issue in Low and Middle-Income countries (LAMI countries).

We know that more than 80% of the world’s children are born in developing countries, yet knowledge and data about early childhood DDs & NDs is limited to high-income countries.

Developmental delays, if not addressed on time, could lead to long-term disability. It is surprising that to date, the true prevalence of developmental delays or disabilities in children in India is grossly inadequate.

Lack of data on prevalence impacts funding priorities of the government, and the availability of early intervention and supportive services through life.

Whats often baffling though is how do countries such as India address issues of developmental delays and neurodevelopmental disabilities in children? How does one estimate the prevalence?

Lack of data or erroneous data? Census and experiences from the field

Evidence from the Census

Intervention and funding priorities of governments are dependent on reliable estimates of delays and disabilities. The Census of India collects data on disability, by asking respondents (verbatim) "Is this person mentally/ physically disabled?" If answered yes, respondents choose the type of disability from the following eight categories (In seeing, In the hearing, In the speech, In movement, Mental Retardation, Mental Illness, Any other, and multiple disabilities).

Enumerating disability using these items are seriously flawed. First, the use of the word 'disabled' is value-laden. Disability of any kind in India is high stigmatized. Hence asking, if the person has a mental or physical disability is not culturally appropriate, and may result in negative response. Second, the distinction between mental retardation and mental illness is blurry and are interchangeable in the general population. Laymen's knowledge of diagnosis is equally fuzzy. Therefore, a question asking of respondents to distinguish between mental illness and retardation could lead to erroneous conclusions. Third, the question tends to use a medical model to identify a disability, rather than a widely prescribed 'biopsychosocial model,' by the World Health Organization. As a consequence, although the Census (2011) identifies 2.21 percent of the population as disabled, personally I think the number is an underestimate.

Data errors: Evidence from the field

While some neurodevelopmental disabilities and delays are visible to the naked eye, some are not, which if neglected may lead to life-long disability. To diagnose delay one needs to measure developmental outcomes against validated and reliable milestones. But,

what if, parents do not know the age of their son or daughter? How do we estimate if the child is, on or off track on developmental milestones?

Surprising as it may, this is exactly what we found when assessing the prevalence of developmental delays in children between ages 0 and 6, using a validated screening tool, in the urban slums of Lucknow, India (PI's Dr. Subharati Ghosh and Dr. Anjana Thadhani). In several instances, neither the parent nor the community healthcare workers could convincingly provide the child's age. Although twenty-five percent of children failed the developmental screening, it was not the results, but the study process which was a shocking eye-opener. It sensitized us to the challenges in data collection on developmental delays and disabilities in children from low-resource urban settings in India.

Collecting, storing and retrieving data to drive change

Screening, diagnosing and providing sustainable services to children who are delayed, or are at risk of delay and disability is a lifelong process, requiring systemic efforts. Take, for example, screening. Who will screen? How to screen? Where to screen? And even if screened and found to fail, then what next? For example, if the community health worker or a doctor in a local government hospital is to screen and diagnosis, how are they expected to maintain data to monitor and evaluate continually?

How does one collect and maintain reliable longitudinal data in urban slums with a heavy influx of migratory population who tend to fall off the radar?

Although this portrays a grim picture, the challenges offer ample room for opportunities to improve early screening, diagnosis, and interventions for children at risk of delays and disabilities.

So what could be done to improve estimates and collect reliable data?

First, collect good prevalence data. Revise the questions on disability in the Census of India to reflect a bio-psychosocial model of disability, rather than a purely medical model. Data is power.

Second, collect reliable data using culturally appropriate methodologies. Empower and educate health-care workers on the importance of numbers. Integrate simple technology to aid in data collection, retrieval, storage and analyzing. This would allow for quick referral. For example, in our study, several prenatal factors such as bleeding during pregnancy, or a child born at home without assistance, born pre-term or low birth-weight were predictive of developmental delays. Can't simple technology bridge the knowledge gap, by equipping existing healthcare workers, also referred to as ASHA workers, to automatically red-flag children with these markers to be screened at birth and followed up over time, and provided with accessible referrals?

The time is ripe for such initiatives. The Government of India has recently launched an ambitious program called the Rashtriya Bal Swathya Karyakram (RBSK) under the National Rural Health Mission to address the 4 D's: Defects at birth, Deficiencies, Diseases, Development delays including disability. Although there are operational directives on data entry and access, we are yet to know the efficacy of the program in addressing long-term needs of children with developmental delays and disabilities. All that we currently know is that the program lacks the required number of professionals to serve the needs. Creative solutions, which includes data collection, management, retrieval and integration, and manpower development is the key to the success of the program.

In conclusion:Collect good data, ask the right questions and invest in building basic cost-effective and easy to use health technology infrastructures so that every child gets an opportunity to live up to their full potential.

Author: Subharati Ghosh, PhD, Global Health Researcher ([email protected])