An extra copy of chromosome 21 is embedded in every cell of Emma O'Brien's body, as it has been since conception and will be for the rest of her life. That is the nature of Down syndrome, which affects about 340 babies annually, making it the leading cause of intellectual disability in Australia. Since Emma's birth, her parents have received an $87.70 fortnightly carer allowance from Centrelink, which helps meet some of the costs, such as speech therapy, associated with her special needs. But now, Down syndrome has been removed from the list of conditions that qualify automatically for the benefit. This means Siena O'Brien must subject her daughter to a medical examination to prove the severity of her disability if she is to continue to receive the payment after she turns six later this year. "The implication is that somehow after her sixth birthday, she'll no longer have a disability," Mrs O'Brien said yesterday. "[Down syndrome] is in the fibre of who she is. After age six, the reality is that early intervention programs finish. Once they hit school, a lot of services are reduced." Children with some rarer genetic and chromosomal disorders - including Rett, Prader-Willi and Williams syndromes - will still qualify for automatic payments, but boys with Fragile X, a common genetic cause of intellectual disability, will also have to undergo tests. Jill O'Connor, information officer at the Down Syndrome Association of NSW, said: "It's really ironic that our community says Down syndrome is such an awful condition that it's OK to terminate a pregnancy because of it, yet the Government will deny you this level of support." She said of medical assessments: "Often they are very negative experiences, where your child's differences are listed over and over again. Families can feel ground down by the constant need to explain and justify. "In this case, there is the added expense and time of another visit to the doctor - and the child isn't even sick." A spokesman for the Commonwealth Department of Family and Community Services, which administers the carer allowance, said families had been given five years' notice of the assessment changes, which were intended "to provide a more objective measure of functional ability . . . the variability of Down syndrome is recognised in these arrangements". Most children would be reassessed at three-year intervals. The program, for which some children with physical disabilities and medical illnesses are also eligible, cost about $740 million in the past financial year. This was 15 per cent more than the previous year, but the spokesman could not explain the increase. Source Sydney Morning Herald - 4 July 2003 - Julie Robotham ###