Parents of babies with disabilities face waiting list for care

The Minister for Health and Children, Mr Martin, may be asked to intervene in a crisis over support services for newborns with…

The Minister for Health and Children, Mr Martin, may be asked to intervene in a crisis over support services for newborns with intellectual disabilities in Galway.

Parents of babies born with intellectual disabilities have been told that there is a waiting list for support services. The list has been introduced by the Brothers of Charity, which provides the service on behalf of the Western Health Board (WHB), but which can no longer cope due to lack of resources and a substantial increase in the number of children being referred.

Galway is the only county in the WHB region to have this waiting list. Shortly before the election, an alliance of disability groups called for the resignation of the WHB chief executive, Dr Sheelah Ryan, if no action was taken on this issue within a month.

It is widely acknowledged that early intervention can make a difference in such cases, and yet there are now at least 21 families on a waiting list. These families have no support apart from that offered by family and friends.

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Galway's population growth, and the Department of Health's decision to devolve funding of intellectual disability services to the health boards, appear to be central to the crisis.

Under a system which has been described as a "proportional dinosaur", the division of funding to the WHB's three counties is three-sixths to Galway, two-sixths to Mayo and one-sixth to Roscommon. It has not been reviewed for 20 years and takes no account of the rapid increase in population in Galway city and county - up to 12 per cent per annum.

In most of the cases on the list, the children have multiple disabilities and are in critical need of intervention and therapeutic services, according to the Galway Alliance of Parents and Carers (GAP). There may be other cases which have not yet been referred. Mr Frank Conaty, chairman of GAP, says the health board had been aware of the problem for nearly two years and took no preventative action.

Even without any new referrals, Galway's Early Childhood Service (ECS) is in crisis - and this is echoed by professionals working in the area. At a recent meeting between the parents' group and an official from the Department of Health and Children, it was made clear that no emergency assistance or additional resources would be available in the short term, and the resolution could only be addressed by future planning.

The WHB has since offered a compromise which will allow the children currently on the list to take up places as they become free in September. However, Mr Conaty says this offers no immediate relief to the families, and there will still be a waiting list, come September, when other babies requiring intervention will have been born. The families that GAP knows of are "near breakdown", he warns. "And there may be more out there who have been left to cope entirely on their own."

The WHB's regional manager of community services, Mr Seamus Mannion, says some measures are being taken to provide support to the families affected now, through advertising for a social worker and a community nurse, and a case has also been made to the Department of Health and Children.

He says the "three-two-one" split of funds between the three counties should be reviewed, and the focus should be on a "needs-based" approach and a change in weighting to recognise different areas of disability.