A woman living in Cork is calling for a meeting with the Taoiseach to highlight the needs of her daughter, who has been without a suitable chair since growing out of it last November.
Katie Healy Nolan, originally from Louth, is a former beauty blogger but is now a full-time carer for her daughter, Penelope.
The four-year-old has a life-limiting illness called pontocerebellar hypoplasia, which is a rare neurodegenerative disorder.
Ms Healy Nolan said it is a “really devastating, regressive disease”.
“It’s like having a newborn but she’s the size of, obviously, a four-year-old.” Penelope is fed through a tube and needs “a plethora of medications just to function”.
One of the problems the family is facing is that Penelope needs a specific postural chair to be able to sit, and the Healy Nolans got a supportive chair through the HSE.
However, Penelope got that chair when she was two and has since grown and it needs to be adjusted.
“We've been left since November with a chair that Penelope cannot fit in,” said Ms Healy Nolan.
She said Penelope has either been sitting on their laps or in a P-Pod seat, which is like a bean bag with extra support.
Ms Healy Nolan said they had to buy the P-Pod themselves at a cost of almost €3,000.
“There’s no reason why Penelope’s chair couldn’t have been let out since November.”
Ms Healy Nolan said the chair was funded by the HSE and Enable Ireland is tasked with the adjustments.
She added funding has been approved for a wheelchair for Penelope, but it is unclear as to when that will be received.
Ms Healy Nolan said Penelope fell out of a chair the day before and that it was lucky their house has a lot of padded floors and cushions on the ground.
“She was very, very lucky that she fell onto a very padded piece of furniture. But she was absolutely terrified.”
The mother of three is looking to raise awareness of the struggles children like Penelope and her family go through and she said she has been asking for help for weeks and months.
She said her calls are falling on deaf ears.
“People with no voices, they're the ones that are being silenced. Well, it’s not going to happen on my watch.
She added children like Penelope have been “completely ignored” during the pandemic.
Ms Healy Nolan also highlighted how the recently introduced Progressing Disability Services has impacted them.
According to the HSE, the programme recognises there are some very good services for children with disabilities and their families but also some large gaps.
The HSE added it is changing the way services are provided across the country to make it equitable and consistent for all.
Ms Healy Nolan said it has left children like Penelope “to the four winds” as therapists are going to different facilities to work in.
“Our care has been handed over to a completely new team who have never met Penelope.
“They haven’t met her yet so nothing has been done.”
When asked about the Healy Nolan’s case, Enable Ireland said that it is “bound by confidentiality in relation [to] individual families who use our services”.
However, a statement did say that under the PDS programme, the number of children and families attending the new Lavanagh Centre in Curraheen has increased from 900 to 1,500.
In Enable Ireland Cork, there are now three Children’s Network Disability Teams working from the centre to provide services including physiotherapy and hydrotherapy, speech and language, social work, psychology, early years education and occupational therapy.
It added: “We know any change in service provider can be a difficult and challenging period of transition for families and we are working closely with families and children to support them during this transition period.” In relation to equipment, Enable Ireland said that its role is to carry out assessments and make referrals for the people in their services.
“Once funding is approved for an aid or appliance by the HSE, Enable Ireland orders the piece of equipment from the appropriate supplier. When the equipment is delivered it is then fitted for the child by an Occupational Therapist and any adjustments are made as required.”
She said her daughter also needs a shower seat and at present, she has to hold Penelope in the shower, which Ms Healy Nolan says is robbing her daughter of her dignity.
She said they recently tried to buy a shower seat privately from the UK but it felt through.
Ms Healy Nolan is calling for a meeting with the Taoiseach to raise some of the issues her daughter, and those like her daughter, face.
She said the delays her daughter has seen “cannot happen to another child on his watch”.
She said: “I was told by his office that there’s never been so much money pumped into the disability sector and of all the fantastic things that he is doing.
“Well, it’s simply not true. They might be pumping money in, but there should be an investigation as to where that money is going.
“The people who need it are seeing none of it.”
Ms Healy Nolan said she had previously asked the Taoiseach to spend a few minutes with Penelope to see how she lives.
She said one of her local TDs, Aindrias Moynihan, rang her on Wednesday night to say he would bring the situation to the attention of Micheál Martin.
When asked for comment, a spokesperson for the Taoiseach said they have been in contact with the family.
“We have great sympathy for the huge challenges the family have faced in caring for their daughter Penelope.
“The Taoiseach’s office has been in regular contact with the family, making a number of calls and emails to them, and on their behalf, since they phoned last week.
“It has engaged with Enable Ireland and The Cope Foundation to see if it could help the family in any way in arranging an assessment appointment, nursing hours and obtaining the equipment she needs.
“Her local TD Aindrias Moynihan has also been assisting the family for a number of weeks.”
Ms Healy Nolan said that throughout lockdown, children like Penelope have regressed “to such an incredible level without any therapy”.
She highlighted her daughter as an example, saying she has never been able to eat but was able to suck a soother sweet.
“She regressed so much that she can't even suck a soother anymore. And that was the only bit of comfort that child has had.”
She added: “So I kind of feel very passionately that I want Micheál Martin not only to know what's happening, [but] to come and to see my daughter, and to see the chair and to see the floor that she fell on.
“Because the HSE are failing everybody, it would seem, but particularly the most vulnerable people of society who need help. It's just ignored.”
She said something like getting Penelope’s chair adjusted is a battle, but it shouldn’t be.
“The point is that it is a battle because people know that you've got the other option but to wait.
“And the problem is for kids like Penelope, she has her life limited. She doesn't have time.”
The equipment that is provided is of excellent quality, Ms Healy Nolan said but that getting it means being put on a waiting list and waiting for funding.
“The fact of the matter is that they put things on the long finger so much. And then if you complain, and if you complain to services, who are your base – touch base at your service.
“If you complain to them, they’ll give you a link to the HSE have your say segment… and when you complain there, you know, you might get a reply you might not. It’s just not good enough.”
She said she feels people have become desensitised to the struggles that some children go through and they are disenchanted with the whole system.
The HSE has also been contacted for comment.
Ms Healy Nolan has said that she is not going to give up.
“I’m going to go to the Dáil and I will stand outside with my daughter and I will not be turned away until somebody talks to me and tells me and outlines what they are going to do to stop children like Penelope falling from a seat.”
Ms Healy Nolan also highlighted the exhaustion facing carers, which she feels isn’t discussed enough.
“I have to fill and administer extremely strong drugs for my daughter. I'm doing so purely exhausted.
She said: “If you’re .5 of a millimetre too strong for her size and her weight, you’re in trouble.
“We have a lot on our shoulders, we have a huge amount on our shoulders, and we treat our children with absolutely nothing but love.”