€170,000 from the health ministry to give babies with Down’s a better future

Chilean poet Gabriel Mistral writes: “We are guilty of many errors and many faults but our worst crime is abandoning the children, neglecting the fountain of life. Many of the things we need, can wait. The child cannot. Right now is the time his bones are being formed, his blood is being made, and his senses are being developed. To him we cannot answer ‘Tomorrow’. His name is ‘Today’.”

Inspire, the NGO that works with persons with disability, need around €170,000 to run a programme for babies with Down’s syndrome and similar conditions. A new service agreement between the Ministry of Education and Inspire that came into effect in January of this year has several important positive features but all new babies are excluded because the new agreement states that those who will be subsidised must be ‘statemented’.

The education authorities insist that the babies must be covered from funds provided by the Ministry of Health. Parents are in despair as Inspire cannot fund the 85% of the programme and the parents cannot afford it. The maximum they can obtain is 50% and also fund 100% of therapies. Inspire will need to find €170,000 from somewhere not to pass on the cost to parents.

Inspire needs the Ministry of Health to fund the therapies for the babies being born with Down’s and other similar conditions.

The babies’ issue needs to be addressed as soon as possible. Inspire has already met Health Minister Joe Cassar to show that this would cost around €170,000 per annum and that government cannot provide a like-with-like service.

This is a small price to pay to cover all those babies who are being deprived of early intervention. Research shows that such babies will become more of a burden on their family and society later on. Parents told me that in these meetings between Inspire and the Ministry of Health, Minister Cassar has referred to some ‘long term solution’ which is leaving them in despair as their babies cannot afford to wait.

Why is government depriving these babies of the early intervention they need to grow up more independent?