Monday 16 September 2019

'I wish I could do more with Robyn instead of her just existing' - mum says State help is out of reach for disabled daughter (8)

Alan O'Keeffe talks to a mother who cannot afford to avail of State help to buy an adapted vehicle for her severely disabled daughter

Constrained: Robyn Kilgallon and her mother Cabrini at her First Communion this year
Constrained: Robyn Kilgallon and her mother Cabrini at her First Communion this year

Alan O'Keeffe

Cabrini Fallon is dreading Christmas. She is feeling imprisoned in her home with her daughter Robyn for the festive season because she cannot afford to avail of the State supports for buying an adapted vehicle to transport Robyn.

Robyn (8) is severely disabled and needs an adapted vehicle to transport her wheelchair if she is to be taken on trips with her parents. Cabrini (40) said her daughter has suffered because they cannot afford to meet the requirements for State assistance in buying an adapted vehicle.

Please log in or register with Independent.ie for free access to this article.

Log In

Robyn suffers from cerebral palsy, severe epilepsy, and has a mental age of just eight months. She has outgrown her old wheelchair and will be getting a bigger motorised wheelchair from the HSE in the near future, said her mother.

But Cabrini and her partner Declan Kilgallon (43) cannot afford to buy an adapted van to transport the bigger wheelchair, she said.

The Disabled Drivers and Passenger Scheme stipulates a vehicle buyer must pay two-thirds of the price of an adapted vehicle before the State pays the remaining one-third.

Robyn's parents indicated they cannot get the finance to fund two-thirds of such a purchase.

Meanwhile, Robyn has grown too heavy for the couple to lift her out of their 11-year-old Volkswagen Golf without a great amount of effort.

"It is a struggle to lift her. Robyn is getting taller and heavier," said Cabrini, who is five feet two inches tall.

"I've lost seven-and-a-half stone in the last year and a half so I'm quite petite now to be trying to lift her," she said.

During school terms, Robyn is collected from her home outside Sligo town every day and taken by minibus to Saint Cecilia's special needs school near Rosses Point.

During the Christmas holidays, Cabrini and her daughter will spend most of the time in their council bungalow on the side of a steep hill on Caltragh Road.

Robyn's father has casual work as a chef and has to drive to work whenever he is needed, said Cabrini.

"I've been dreading the Christmas holidays because I feel we'll be imprisoned all day when Declan is working. I constantly feel guilty that I can't bring her to Christmas parties or birthday parties," she said.

"I feel absolutely isolated a lot of the time. I wish I could do more with Robyn instead of her just existing.

"It can be a very lonely life," she said.

The couple looked at second-hand wheelchair adapted vans - but they could not afford to pay two-thirds of the €15,000 to €20,000 purchase prices themselves, she said.

She receives a carer's allowance and Robyn has a primary medical certificate entitling her to fuel and toll allowances but only if they own an adapted vehicle.

Cabrini said they would try to come up with a portion of the price if they got more assistance to purchase one.

But their combined income is too low to get a bank loan, she said.

"I feel bad that I've never been able to bring Robyn to all the places I'd like to bring her. Having a van would allow us to do all these things," she said.

"Robyn was a perfectly healthy baby and we used to be so proud when she was saying 'Ma Ma' and 'Da Da'.

They sought medical help quickly when Robyn became ill - but her meningitis was not diagnosed in time to prevent severe brain damage. Robyn cannot walk or talk.

"We never heard her say 'Ma Ma' or 'Da Da' again," said her mother.

"We've never been able to enjoy any milestones in her life. She doesn't understand who Santa is. We couldn't even put her first tooth under her pillow as it would mean nothing to her.

"Robyn is our only child. She can't feed herself and all food must be pureed. She doesn't talk and doesn't wave or communicate or even cry," she said.

"She gets seizures nearly every day. She constantly kicks out but she's a smiley, happy child," she said.

Catherine Cox, of the Family Carers Ireland group, said: "In order to avail of the tax reliefs under the disabled drivers and passengers' scheme, a family must be able to fund two thirds of the cost of the adapted vehicle up front.

"Given this family's financial circumstances, this is simply not possible," said Ms Cox.

Also, the withdrawal of the Motorised Transport Grant and Mobility Allowance Scheme in 2013 should have resulted in replacement schemes being introduced to help families, she said.

"Since the withdrawal of both these schemes, Family Carers Ireland have lobbied Government to introduce a replacement support scheme but nothing has been forthcoming, resulting in thousands of families across Ireland being denied access to support that carers in similar circumstances are availing of, simply because they applied prior to 2013," said Ms Cox.

"In the meantime, the HSE continues to make monthly payments to people who were getting the Mobility Allowance when the scheme closed, but not to new applicants.

"In short, this means that since 2013 the only transport support available to carers is the Disabled Drivers and Passengers' scheme, a condition of which is that the person must be without the use of a limb.

"But many families, like Robyn's, are not able to come up with the substantial sums needed to avail of it," she said.

Sunday Independent

Editor's Choice

Also in Irish News