FREQUENTLY ASKED QUESTIONS

Questions families ask.

These are the questions that come up again and again, in the weeks after a diagnosis, in support groups, at two in the morning. Answered directly.

My child was just diagnosed. What do I do first?

Ask for a referral to your nearest District Early Intervention Centre (DEIC). This is the gateway to most government support and it is free. If your child attends a government school or Anganwadi, your ASHA worker can help. If not, ask your diagnosing doctor for a written referral to the DEIC.

Is the government screening programme really free?

Yes, for children attending government Anganwadi centres and government schools. Screening, referral, and treatment including surgery are all covered. If your child attends a private school, ask your paediatrician to refer you to the nearest DEIC directly.

We cannot afford treatment. What financial support is available?

Ayushman Bharat (PM-JAY) covers hospitalisation up to ₹5 lakh per year for eligible families. The National Policy for Rare Diseases provides up to ₹50 lakh for treatment at government Centres of Excellence. The government screening programme covers treatment costs for conditions identified through screening. See our Schemes & Support page for the full breakdown.

My child's condition is not on any government list. What now?

District Early Intervention Centres can refer children with conditions outside the standard list to appropriate specialists. For genetic and rare conditions, AIIMS and other designated hospitals have clinics open to families not just researchers. Write to us and we will try to help you find the right pathway.

Nobody in our family has this condition. How did our child get it?

Many conditions including nearly half of all NF1 cases arise from spontaneous genetic changes that were not inherited from either parent. It was not caused by anything you did, ate, missed, or failed to do. Genetic counselling at a specialist centre can help your family understand the specific pattern of your child's condition.

My child is being bullied or excluded at school because of their condition. What are our rights?

The Rights of Persons with Disabilities Act (2016) gives children the right to free, inclusive education and protection from discrimination. Schools are legally required to make reasonable accommodation. A disability certificate from a designated government hospital is the entry point. If a school is not complying, you can approach the State Commissioner for Persons with Disabilities.

I'm a teacher and I think a student may have an undiagnosed condition. What should I do?

Speak to the child's parents privately. Describe what you have observed, specifically and calmly. Suggest they see a specialist a developmental paediatrician or pediatric neurologist, not a GP. If the child attends a government school, you can contact the school's health team directly. Acting on what you notice is the single most useful thing you can do.

Can I share my family's story with Little Lives India?

Yes, and we would be grateful. Nothing is published without your full approval. Pseudonyms are used by default. You decide what is shared and what is not. Write to us at littlelivesindia.com.