A GLENBRIEN mother of four disabled adults has spoken of her hurt as she feels her family has been repeatedly let down by both the Health Service Executive and the County Wexford Community Workshop (CWCW) in Enniscorthy.
Frances Ryan is a mother to seven children, four of which have Fragile X Syndrome – Bobby (31), Ben (25), Amy (25) and Corey (17). This genetic syndrome means that they have not developed fully and need constant supervision.
Their parents Frances and Matthew, who have three other children that do not suffer from the condition, Kelly (25, triplet to Ben and Amy), Megan (20) and Lee (27), have said they are worried for the future due to a lack of services provided for their needs.
Frances told The Echo that she and her husband had cared for their children unaided for almost 30 years. They were never aware of what services each of their kids were individually entitled to and only started to push for extra help as they grew older.
Although Corey is attending St. Patrick’s SpecialSchool, their other three disabled children had been attending the CWCW between the past 6-12 years, and she says the family never had any problems.
“It all seemed to be going well, the lads all seemed happy to be there and we never had a problem with any of the staff,” she commented. “That was until we started to push for services – it all went wrong from there.”
Speaking on South East Radio last week, Matthew said that the couple had a meeting a few years ago with senior members of the HSE which they took great comfort from – they were told the HSE would seriously look into creating a 20 year home care package for the family which to them was like “winning the lottery”. However, Matthew said he was dismayed to realise that “promises were made by word of mouth and not action”.
He said that his children had only ever availed of day care services, except his eldest son Bobby who received one weekend of respite a year.
Recently, he added, different ladies have visited the family home in the morning to shower Ben and Bobby but this doesn’t include Corey or Amy, which confuses the couple as they can’t understand why two of them avail of the service and two don’t.
He said: “We never got any services other than day services for any of them – its only when we started to push as we got older that we have gotten slight services here and there, but we’ve asked on numerous occasions as individuals what are we entitled to, for the four of them as individuals, and we cannot get answers”
He said although he and Frances were always satisfied with the care their children were receiving in the CWCW, they only ever dealt with floor staff, who they found excellent, and never with management. This was until a number of incidents began, causing what Frances says was a downward spiral in the relationship between the family and senior management.
[For full story, see this week’s Echo.]