PARENTS IN THE south-west have questioned a “lack of transparency” around the funding of vital equipment for children with multiple disabilities.
The controversy centres around different funding streams within the health service and its southwest organisation covering Cork and Kerry.
Parents have been trying to claim specialised equipment for their children but have found their appeals to the HSE have been rejected, with a lack of funds cited as the reason.
The HSE has previously maintained it has a “finite budget” for funding equipment but parents are not satisfied with the information surrounding the budget.
Because they’ve been told that due to budgetary issues the equipment could not be provided, they sought to lobby politicians to have the funding increased.
The parents’ frustration comes following what they’ve claimed were numerous “contradictory answers” from the HSE about the budgets in question.
They say this has made the process of finding out what money is available for their children’s day-to-day care “beyond frustrating”.
One of the funding streams is the south-west region’s Resource Allocation Group (RAG) which has a €6-7 million euro annual budget for vital equipment and other items for children and adults with disabilities. It holds monthly meetings where it reviews applications for these pieces of equipment.
Parents had been told repeatedly by the HSE that no data or budget was kept on equipment funding, only to learn in recent days that the figures have existed for some time.
One parent, Rebecca O’Riordan, told The Journal that she and other parents’ requests for equipment for their children were rejected.
When she asked the HSE for more information, she was told that no breakdown was available for the RAG budget, a position which was reiterated in December when it told her in a letter that “no further breakdown is available” on its expenditure beyond its total budget – but only weeks later the HSE gave a TD the breakdown for specialised equipment.
Different TDs had been told throughout last year that there was no breakdown available, with one, Labour’s Sean Sherlock, told that information on the amount drawn down for children was not “currently maintained”.
Speaking to this website, the Cork East deputy there is a “desperate need for more transparency” in disability services.
“These are for families who are going through turmoil because they feel that if their child can’t get timely access to services, then the child falls behind from a developmental point of view,” Sherlock said.
Only weeks later, in one parliamentary question (PQ) released by the HSE to Social Democrats TD Holly Cairns, it found that an RAG budget of €522,000 was in place for paediatric equipment in 2021. This rose to €947,000 for 2022.
“The RAG committee consistently tell families that they are subject to a limited budget and it’s very unfortunate and they wish they could do more,” O’Riordan said.
“Then when families try to access information on that budget and assess what the discrepancy is in order to lobby their elected representatives, we are told that everything is great, there’s plenty of money. It is beyond frustrating.”
In a letter O’Riordan shared with The Journal, the HSE said it would start tracking its spend on child aids and appliances from 1 January.
However O’Riordan blasted this as a “comical idea”, saying that the RAG group “must know exactly how much of a budget they have available each month, otherwise how would it do its work?”.
O’Riordan, who is also a spokesperson for parents group Fuss (Families Unite for Support and Services), said an explanation is needed.
“This is public money and we looked for this information for the past year because we found it very hard to believe that they wouldn’t know how much the budget is.
“If your wheelchair is broken, or it’s not working or it’s so incorrectly fitted that it’s causing you pain, that impacts your daily life.”
‘There’s so little transparency’
Another parent, Stephen O’Mahony, has found he has not been able to secure approval for a ceiling hoist for his daughter Alexis.
O’Mahony said the family have been told to go through the RAG process but have found they have been left in limbo.
Ceiling hoists are among the pieces of equipment to have been rejected by the RAG group last year.
The six-year-old lives with her parents in Killarney, Co Kerry, and requires 24-hour care, due to a number of disabilities, including cerebral palsy, severe developmental delays and partial dislocation of her hip.
“There’s so little transparency. We’ve not been able to get a clear pathway of what’s going on and it feels like it’s pure red tape.
“Sometimes I get lost thinking about this; this is a very basic piece of equipment so my daughter can function to the best that she can, but we can’t get it.”
Cork South-West TD Holly Cairns said it had been challenging to access information on the issue and that while some questions have been answered, she added that there remains “insufficient data” on waiting lists and budget allocations.
“Of all the people and groups I deal with, many of them in difficult situations, the parents of children with disabilities are among the most exhausted and frustrated.”
HSE statement
The HSE’s Community Health Organisation for the region (also called CHO 4) told The Journal that the breakdown was not available when the HSE was contacted about the matter in recent months, including up to when Rebecca O’Riordan was issued the letter in late December stating this.
Instead, the HSE said details of the expenditure for specialised paediatric equipment, such as ceiling hoists and wheelchairs, “later became available and was included in the PQ response to Deputy Cairns”, just weeks later.
The HSE added that it wanted to stress that this information is just the “details of just one part of the expenditure, and the full breakdown is still not available”.
The budget is allocated according to clinical need, it continued.
“However, where possible and appropriate, Cork Kerry Community Healthcare prioritises the funding for paediatric patients within the overall Primary Care budget.”
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