The parents of a Galway child with Down Syndrome - who suffers from a sleep disorder - have to pay more than €70 per month to rent a lifesaving machine for the boy.
The five-year-old has sleep apnoea, a potentially life-threatening condition in which breathing is disrupted during sleep. It affects men and women of all ages but is believed to be more common in males.
The sleep apnoea machine or CPAP therapy - continuous positive airway pressure - is the most commonly used treatment for people suffering from this disorder.
However, this treatment comes at a high price for this local family. While the child qualifies for the Long Term Illness scheme - which covers free drugs and medical appliances for the treatment of specific long term illnesses and conditions - unfortunately the machine is not covered under it.
The family applied for a medical card for their son but their application was rejected. When they appealed the decision they were informed their original application was out of date and were advised recently to re-apply.
Local Reform Alliance independent senator Fidelma Healy Eames is calling for the immediate review of the LTI scheme for children with Down syndrome.
“Although the Long Term Illness booklet in the possession of this Galway family states that medical and surgical equipment is covered, this Galway parent explained that this is not in fact the case in practice.
“The little boy rightly qualifies for the Long term Illness scheme. However, despite the claims on the cover of the LTI booklet, this machine is not covered. It makes no sense. It shows that the bureaucrats in the HSE do not match the needs of the child with the claims of the scheme as clearly noted on the booklet. This is a life-saving machine. Without it the little boy will not get the oxygen he needs while he sleeps. He cannot live without it. It is as basic as that.”
She says the only item the family can avail of under the scheme is one listed antibiotic. “This is only a very small part of the family’s monthly medical expenses and indeed may not always be the suitable antibiotic at that. This is an anomaly which must be immediately addressed and corrected.
“To add insult to injury this family has also applied for a medical card for their son and have been rejected separately. On appeal they were told their original application was out of date and they would have to apply afresh. This is putting the family through unnecessary hoops.”
Senator Healy Eames points out that in the case of children with Down syndrome they may have different medical requirements and the LTI scheme should reflect this.
“This family was refused a medical card on income grounds despite the very clear medical need of their son. Having a lifelong disability heaps stress and worry on parents. The very least the State can do is to provide basic support for the medical needs of children with lifelong medical and disability-related conditions.
“To be fair to this family if the monthly cost of the sleep apnoea machine was covered they may not persist with the medical card application thus saving further costs to the State.”
The Oranmore-based senator says she has written to the HSE and the Minister for Health requesting that the anomaly in the scheme for Down Syndrome children be corrected as a matter of policy and good practice.