Speaking in the Dáil this evening, Cork North Central TD, Jonathan O’Brien outlined a number of cases where extremely sick children had their medical cards withdrawn and called on the Minister to ensure that these are reinstated immediately.
Deputy O’Brien said:
“The refusal of the Minister for Health to recognise the hardship that has been caused by the reductions of awarding discretionary medical cards is simply inhuman.
“The Fine Gael parliamentary group has now realised that they now must address this with the acknowledgment that there are indeed “hard cases” but I hear these cases every week in my constituency office.
“In one case a child with significant development delays due to the deletion of Chromosome 20, Cerebral Palsy and Wiedemann- Steiner Syndrome, who is blind, deaf in one ear, non-verbal, has movement delays and is still in nappies at the age of eleven had her medical card withdrawn.
“Her dad’s last payslips have shown an income of €636 per week. Her Mum receives carers allowance of €900 a year.
“Her parents are spending €3,000 a year in nappies. They spend about €1,000 a year on vests and sleepwear and bedclothes for her as she gets sick so much.
“Because of this, their washing machine is constantly on and their ESB bill is over €4,500 a year- the costs of simply caring for these children, let alone providing for their medical needs is enormous.
“It is grotesque to put families through this sort of thing and the cuts to discretionary medical cards in the HSE Service Plans for 2014 must be reversed as a matter of urgency.
“Parents should not be forced to send begging letters to the HSE or the Minister or to TDs so that they can secure the most basic of services for their children.”
Text of speech – Check against delivery
The refusal of the Minister for Health to recognise the hardship that has been caused by the reductions of awarding discretionary medical cards is simply inhuman.
A realisation of electoral need has come to the Fine Gael parliamentary group that they now must address this with the acknowledgment that there are indeed “hard cases.”
Every week I hear of “hard cases” in my constituency office.
One case is of a two year old girl with a rare genetic condition.(1q43q44 microdeletion associated with global delay) She is almost 3yrs old and cannot walk, talk, crawl, stand sit unaided, feed herself nor can she chew food, drink from a cup. She is completely nonverbal, does not cry and has no way of expressing her basic needs, hunger etc.
She attends numerous doctors and specialists including neurologists, specialists in eye and aural clinics, paediatricians, dietician, physiotherapist, occupational therapist and speech language therapist. As evidenced by this list, this child’s levels of care and intervention needs are very high and are a substantial financial burden on her parents, now that she is without a medical card.
She also has microcephaly and possibly has hip dysplasia. A simple spike in temperature will trigger a seizure in the toddler, these seizures can last for up to 40 minutes.
Because of the renal and skeletal and other conditions associated with her diagnosis, there is no way of accurately predicting the future costs of her medical care.
She lost her medical card before Christmas as her parents are both teachers and are over the income limit.
They reapplied and their application is now with appeals.
I know of another family who have an eleven year old girl.
She significantly developmentally delayed due to the deletion of Chromosome 20. She has Cerebal Palsy She is one of only six people in the world to suffer from Wiedemann- Steiner Syndrome. She is severely intellectually delayed. She has visual impairment to the degree that she is legally blind. She is deaf in one ear, is non-verbal, has movement delays and is still in nappies at the age of eleven.
Her doctor states in his letter of support that she has on-going medical requirements ‘over and above that experienced in the normal population’.
She had a medical card from June/July 2002 until 2012. They were refused, they appealed in 2012 and 2013. They have an appeal with Ombudsman and also a new application in since 8th of April. This hasn't yet been seen by the medical assessor. Her dad’s last payslips have shown an income of €636 per week. Her Mum receives carers allowance of €900 a year.
The family moved house in 2005 to facilitate the girl’s needs and have a steep mortgage – and had to do many modifications to this house just to make it safe for the child to live in.
Her parents are spending €3,000 a year in nappies. They spend about €1,000 a year on vests and sleepwear and bedclothes for her as she gets sick so much. Because of this, their washing machine is constantly on and their ESB bill is over €4,500 a year. The costs of simply caring for these children, let alone providing for their medical needs is enormous.
It is grotesque to put families through this sort of thing.
I know a woman in my constituency has cancer in her spine. Last month she was diagnosed with brain cancer and has started radiotherapy.
To make matters worse for this family, they have been told her medical card will be cut off later this month.
I cannot comprehend how a government can treat people like this.
Families who have received devastating diagnoses of their children or siblings or parents should be treated not only with respect, but basic compassion.
The cuts to discretionary medical cards in the HSE Service Plans for 2014 must be reversed, and furthermore the Free GP programme must be implemented in such a manner that those entitled to a medical card under the current rules will lose their services. It simply isn’t fair to do otherwise.
Parents should not be forced to send begging letters to the HSE or the Minister or to TDs so that they can secure the most basic of services for their children.
Healthcare should be a constitutional right.
The stress of this on parents is very hard to manage.
Many members in this chamber will have experienced people arrive in to their constituency office with folders full of letters from doctors and health care professionals and experts in to various conditions.
These are parents who are literally on the edge, breaking down in tears as they narrate their story or their child’s story once again to a stranger in pure desperation.
The state provides little by way of services to sick children.
And if the state is not willing to provide services to sick children, it should, at the very least provide a medical card so that those sick children can receive what they need.
And they shouldn’t be thrown to the wolves of the review system every 6 to 12 months. Parents caring for children at home keep children out of the hospital system.
Very shortly after I was elected to the Dáil, we gave statements on suicide. Since then I have seen various initiatives and government members attend photo ops for suicide awareness.
I say this, not to divert attention from the importance of the medical card debate, but to draw attention to the effects of what the Government is doing when they take the most basic of necessities away from people.
The stories that I outlined are a snapshot from my constituency.
They are replicated over and over and over again across the 26 Counties.
This is not just about the child or adult who needs the medical card. There are also parents and carers affected.
Placing the onus on parents to plead their “hard case” to their local, presumably Fine Gael, TD is not fair.
It isn’t right.
This whole system must be changed.
I am urging you Minister, for the sake of these children to make those changes.