The Tyrone couple whose teenage daughter has Down’s syndrome, is a wheelchair-user, has extensive brain damage and can’t move her legs, but has been turned down for PIP payments
THE mother of a severely disabled Co Tyrone teenager says she is “shocked and disgusted at the lack of compassion” after her daughter’s Personal Independence Payment (PIP) claim was rejected.
Talitha Grace McClenahan (17), who lives with her family outside Fintona, was born with Down’s syndrome and the related cardiac condition atrioventricular septal defect.
The part-time student at Arvalee School in Omagh also suffers from a range of other serious conditions, and is awaiting major spinal surgery for scoliosis.
Her mum Deborah (47) told the Belfast Telegraph that her daughter’s Disability Living Allowance (DLA) had been stopped and her PIP claim refused.
Deborah, a full-time carer for her daughter, has also lost her Carer’s Allowance.
She had been told that Talitha Grace would receive DLA for life.
Despite the family resubmitting the rejected PIP claim, they were told on Friday that the original ruling stood.
“I’m angry at the injustice,” said Deborah, who looks after the teenager with her husband Albert (48).
“Talitha Grace’s needs are very complex. She needs 24-hour nursing care and supervision, someone with her at all times.
“As well as the Down’s syndrome and the cardiac condition, she had a traumatic brain injury at three months old, leading to the other conditions.
“The atheloid cerebral palsy affects her fine motor skills, balance and co-ordination.
“She has extensive brain damage, which means her left side is badly affected, and the right-sided hemiparesis means there is no movement on her right side.
“She can raise her left hand up but can’t bring it to her mouth, and there’s no grip reflex, she can’t hold onto a spoon.
“She is wheelchair-bound, she can’t stand or move her legs, she has problems with her hips.
“She has had a growth spurt, one side is growing and one is not growing, so it is in an S-shape due to the scoliosis, which will eventually affect her bowels and lungs.
“So not having surgery isn’t an option any more. She had major cardiac surgery in 2001, and she could have the surgery for scoliosis in June or July. My daughter has been likened to a newborn baby, but I think a newborn would have more head control.
“She can’t walk, wash, feed or dress herself.”
Deborah said she was visited by a PIP assessor in November 2017.
“He didn’t ask to see Talitha Grace, who was in the next room, even though I offered,” she revealed. “I was quite surprised when, the following summer, I got forms and they needed to know how Talitha Grace’s disability affected her daily living.
“I was meant to have the forms in at the end of August but I got them in at the start of September, as Talitha Grace took a very bad chest infection and was admitted to hospital, where she had to be put on IV antibiotics.
“She also had a pressure sore that was being dressed by nurses every other day for five weeks, then I caught the chest infection.”
On November 5, 2018, she received a letter from the Department for Communities (DfC) informing her that Talitha Grace’s DLA would come to an end on November 13, and that her daughter’s PIP claim had been rejected “because you haven’t provided the information we asked for”.
Deborah then phoned the PIP helpline. “The man said that they had received it late, but they had all the information and that they could look at the claim again without the need to submit anything else. He confirmed that he had resubmitted it,” the mum-of-seven explained. “The next day I got a letter which also said they could look at the decision again without anything else needing to be submitted. Just to make sure, I responded with a note telling them to go ahead, as well as a note telling them about Talitha’s Grace’s disabilities.”
Deborah says she subsequently received a letter claiming that additional information hadn’t been received over Talitha Grace’s case, despite the fact it was never requested. Then, last Friday, the family received a letter from DfC stating that it was “unable to change the original decision”.
Deborah said: “When they made the PIP decision they knew she was in nappies.
“Every single bit of information they asked for was supplied.
“I’m angry at the injustice. I was shocked that someone could have looked at that evidence and ruled against it.
“That money made a difference, we used it for sensory equipment, for days out.
“I have no idea what they expect her to do now in terms of making money. I would like to invite them to meet Talitha Grace and to see the struggle she has every day.”
She said that the family had received an outpouring of support since revealing their case on social media.
“It seems that there is a lack of humanity and compassion, not only in Talitha Grace’s case,” she added.
“I have had so many people contact me, including a Belfast-based solicitor, who has offered to take on Talitha Grace’s case for free.
“Without the support we have received, I would be very despondent.
“I was never told why they took this decision over Talitha Grace, and I want definite answers. I intend to send a letter off tomorrow.
“Unless they reverse their decision we will appeal. I hope I can make a difference, not just for Talitha, but for others.”
The Department for Communities said: “While we cannot comment on individual cases, the department and Capita, who deliver the Personal Independence Payment assessment service, will look into the concerns raised and get in touch with the family.
“If after review a person continues to disagree with the department’s decision not to award PIP, there is then an opportunity to appeal to an independent tribunal.
“All PIP assessors in Northern Ireland are health professionals with specialist training in conducting functional assessments. They must go through the formal Department for Communities’ approval process to ensure they meet the department’s experience, skills and competence requirements.”
In today’s newspaper we publish the disturbing story of a severely disabled Tyrone teenager who has had her application for Personal Independence Payments (PIP) rejected.
Talitha McClenahan, aged 17, was born with Down’s syndrome, and she suffers from cerebral palsy and other debilitating conditions.
Her mother Deborah has revealed that the Disability Living Allowance (DLA) which, she was told, would be given to Talitha for life, has been stopped, and that her claim for PIP has not been approved.
The allowance for her carers — in this case her parents — has also been stopped, and this is causing distress, and considerable financial challenges, to the family.
To add to their predicament, it appears that Talitha and her parents have not been given a full explanation as to why her PIP claim has been refused.
It beggars belief that people who are facing such enormous challenges are being treated in this way. Unfortunately this is not the only disturbing case recently. Last September Tom McWilliams spoke of his disgust when his daughter Roisin, who was undergoing treatment for stage four Hodgkin’s lymphoma, was turned down for PIP payments. Two months later Lynette McHendry, who has terminal cancer, declined to complete a PIP claims form to confirm that she had only a short time to live.
At the heart of these stories is the reality of families living in the most challenging of circumstances. These payments are meant to help those in distress, but in some cases the bureaucracy has left people feeling bewildered, powerless and stripped of their dignity.
Their cases have made headlines because the people involved feel that they have no other recourse left but to go public, with often the most personal of details.
One only has to read about the difficulties facing the Mc Clenahans and other families to realise the distress and challenges they are facing on a daily basis, and in some cases around the clock. These and similar issues concerning PIP have been ongoing for some time, and it is a matter of urgency that the right measures are put in place to ensure that individuals and families are not left to suffer in this way.
Meanwhile, the people of influence who could help break this kind of disturbing log-jam are unable to help because the Assembly is still not working. Once again it is clear the politicians’ party agendas are more important to many of them than the welfare of people in all our communities.