Challenges

• The local villages are spread out. The roads are poor, and unsafe traffic manners make driving in India dangerous. Children with a disability are not easily transported on a bicycle or motorbike. Unlike in the West, the parents of our children have no cars. There is no public transport to our centre. Therefore it is essential that we offer transport with our school-van.

• The tropical climate is extreme. Most of the year it is very hot and it doesn’t rain. The winter monsoon (usually from middle of October to middle of December) can be very heavy. The housing situation in the villages is bad during this period, with roofs leaking and the firewood for cooking becoming wet. There can be long interruptions in the electricity supply at any time, but especially during the rainy season.

• Many of the parents have irregular income, often below the poverty line from their work as day laborers, and no health insurance or provision for their old age. The economic changes in India happen extremely fast, but it is mainly the middle class which has profited and the majority of poor people are being left out. The inflation rate is highest for basic goods such as grains and vegetables which affects the poorest people most.

• Disability is a complex problem, not readily accepted in the context of the Indian society. It is difficult for parents to accept that their child might need special care for the rest of their life, especially as most parents have no social security and expect their children to take care of them when they reach old age.

• A number of our parents from the local villages have no formal education and are are illiterate as a result. Sometimes they expect miracles from us. For example, they think that their child with a severe disability will be able to walk or talk by doing an exercise only a few times or after getting a special injection.

• Many children are undernourished and frequently have intestinal parasites, head lice, skin and other infections. We do a lot of health care and sometimes social care for the whole family in order to support them with the special needs of their child.

• In the local villages there are still marriages between close relatives which often results in genetic disorders in their children.

• It is not easy to find qualified professionals who like to work with the village population. Therefore, we have to train our staff for our own needs and based on our own standard.

• Pediatric specialty centers for diagnoses are slowly developing in India, but are not easy to reach or affordable for our families.