Mum of Laois toddler with disability labels HSE storage problem 'scandalous'

The mum of a Laois infant with disabilities is struggling to comprehend what she says is a 'scandalous' issue with a local HSE storage facility which they claim could end up costing them thousands of euros but also delay the development of their child.

The mum of the infant with disability issues contacted the Leinster Express / Laois Live in frustration with an issue she's encountered since her child, aged one, was referred to the Children's Disability Network Team (CDNT) in Laois.

The HSE says a CDNT includes health and social care professionals. They provide services for children with disabilities. Each team member specialises in different areas of child development. They work together with families to support children with complex needs.

One element of this work involves assessing a child's disability needs and organising equipment to help children live and develop and overcome the disability.

The parents who contacted the Leinster Express / Laois Live were recently referred to the team. At one of the first consultations in Portlaoise, they were advised that their child would need a device to help with standing. The equipment is crucial as it helps the child's progress to walk later on.

However and to their surprise, the parents say they were also told that they would have to purchase the device. Families are supposed to be able to borrow devices from the HSE through the team. However, the parents claim that this was impossible because the team could not access equipment for Laois children because of an issue with a storage facility.

The parents claim that the storage unit in Mountmellick was inaccessible due to a health and safety problem which meant equipment purchased for the Laois team could not be accessed for the past three years.

"Nobody has been in or out of the building for three years so nobody has access. That equipment is in extreme demand so every individual that needs equipment is being purchased but if you don't have a medical card you fall through the cracks," said the mum.

Secondly, there is supposed to be a regional and national backup arrangement when equipment cannot be sourced locally. However, the parents say Laois is not now registered on the so-called 'Assettrak' HSE system which would allow teams source the equipment through a regional or national loan bank.

The parents researched the price of the device their child needs and found it would cost €2,000. They were told that if they had a medical card a device could be purchased for them though this could take time.

While they will only need the weight-bearing device for a relatively short time, they know that their child will need other likely costly devices temporarily as the infant gets older. 

They have already been told if they do not have the device recommended right now, the child is behind the ideal timeframe for development.

The parents have spoken with members of Disability Network teams in the Dublin and Wicklow regions and found that Laois is out of step with how families should normally access devices.

"This is scandalous. My child needs one right now. But there is a room full of equipment that children could be availing or there is a system that the rest of the country uses to borrow from. But they are not doing that in Laois," she said.

The mum said the expensive equipment is gathering 'cobwebs' in the storage facility while the taxpayer is losing out because funds are being paid out through the medical card system for new equipment that might only be used once.

"Surely this is abusing it (the medical card system). Where is all the money coming from? It's not right," she said.

Apart from the equipment, the mother believes that the Laois network is one of the most under-resourced in the country. She said this was highlighted by Laois TD Brian Stanley at a pre-election meeting on disabilities in Portlaoise. 

The Leinster Express / Laois Live contacted HSE. It confirmed that there is reduced access to the facility.

"The HSE can confirm that due to a health and safety issue within HSE Therapy Stores, Mountmellick there has been reduced access to equipment located on the mezzanine floor of this building. But stock held in this premises for paediatric services are recycled aids and appliances only. It should be noted that there is not a significant amount of paediatric equipment available for recycling due to the nature of the caseload and the needs of the children, in that regard the Children’s Disability Network Teams (CDNTs) have advised that the reduced access to the premises is not significantly impacting the provision of equipment to families.

"At present, new equipment when required is ordered. When ordering new aids and appliances, there can on occasion be delays in relation to getting appointments with the Reps from the various companies, however the CDNTS have advised that no child to date has been significantly delayed in getting their appropriate equipment.

"In addition to the purchase of new aids and appliances, the clinicians with the CDNTS, where possible work to identify equipment in the community which can be re-issued and re-used without storing in the MDA Unit, Mountmellick. This means that in some cases where a child no longer requires a piece of equipment the staff from HSE Stores collect the equipment, clean it, service it (without storing it) and then re-issue to another child in the community.

"Where there is no child in need of the equipment then it has been cleaned by HSE Stores staff and stored within the HSE Spraoi Centre in Portlaoise. Also it should be noted that the frequency of the Aids and appliances meetings held by the Heads of Discipline in the Midlands has increased to twice a month, thus reducing delays in relation to obtaining funding for new equipment. The HSE can confirm that there is no wastage of equipment in the community.

"Finally, HSE confirm that the CDNTs in Laois / Offaly do not advise parents to buy or borrow equipment, although are aware that parents do, on occasion decide to seek equipment with their own private resources," said the statment.