In May, Rach Nightingale’s brother called her. He started the conversation as he often did. “Hey sis.”
Then, matter of fact, he broke the news. That he had been given five to 10 years to live, says Nightingale.
Her first thought was of racing to his side, over to the United Kingdom. And she did, she said recently. “But I had to squeeze everything into two weeks.”
She couldn’t stay longer. To do so would have meant forgoing her disability allowance, the weekly payment of €220 a week for low-income disabled people on which she depends.
Nightingale is one of roughly 21,200 people who live in Ireland but aren’t citizens and who depend on these allowances – and for whom spending more time with their family overseas can come at a price.
Staying abroad for really long stretches would mean failing the legally ambiguous “habitual residence” condition, Nightingale says.
But the Department of Social Protection stops seeing her as a resident of Ireland if she spends more than two weeks abroad, for almost any reason, says Nightingale. And she wants that to change.
“I’m not setting up a new home, I still have to pay my rent here,” said Nightingale. “It doesn’t feel fair.”
A spokesperson for the Department of Social Protection didn’t directly respond to a query asking if it would reconsider this rule.
But they said people with disabilities couldn’t be paid for any period they aren’t resident here, except when doing a second- or third-level course abroad with a back-to-education grant or getting medical treatment not available in Ireland.
People can be absent for up to three weeks for other reasons in any rolling calendar year, and still get payments, they said. Like “while on holiday, attending a funeral, visiting a sick relative.”
But in a letter to Nightingale dated 26 July, a department staffer says the exempt period is just “TWO weeks in any 12 month period”.
It’s unclear why the department is giving two different figures – three weeks from the spokesperson, and two weeks in the letter.
When in need
People qualify for the disability payment if they have an injury or illness that has lingered or is expected to linger for at least one year, according to the department’s website.
When Nightingale moved from the United Kingdom five years ago, she hadn’t envisioned a life reliant on the payment. “I came over with a job offer, and I worked,” she said.
Two years ago – when the Covid-19 pandemic still loomed large in people’s lives – she fell ill, she says. “I’ve had health problems in my life, but I became a lot worse.”
She applied for the disability allowance, which was eventually approved.
Around the same time, her relationship ended. Since she was living with her ex, she lost her place. Because she hadn’t made friends here who she could stay with, she had to go back to England and look for a new place from abroad, said Nightingale.
She called the Citizens’ Information hotline from there to make sure she was doing everything by the books, she says.
They asked how long she had been away, she said. When she said three weeks, they asked if she knew she was risking her disability benefits. Two weeks, they said, was the threshold.
“And when I came back, I told the [Department of Social Protection] that I’d been out of the country, and they said we need to see your itineraries,” said Nightingale.
She says they told her she was running up benefit debt and deducted funds from her disability payments until it cleared up. “In their eyes, I had, like, overstayed in another country.”
A spokesperson for the Department of Social Protection said that people on disability aid have to let it know before leaving the country and offer details of travel plans.
“In order for a determination to be made regarding their continued entitlement to a payment,” they said.
The spokesperson said the department restores their benefits once they return and pays back arrears if somebody is owed them.
Revisiting the rules?
Nightingale feels uneasy sharing private details of travel plans with a government department, she said. “That just feels humiliating. Like, why does the government get to know where I go?”
There is a “change of circumstances” form on the Department of Social Protection website that disabled people planning to leave the country must fill out.
People can pick from significant life events such as getting married or the death of a partner, and also “absence from the State”.
Nightingale says she didn’t think going away to see her family amounted to a change in her circumstances. So, she dismissed that.
“I don’t know about you, but I consider that my circumstances have changed if I get married or it’s a major change that I have made,” she said.
A spokesperson for the Department of Social Protection said that leaving the country for any stretch of time counts as a change in circumstances. Information about that is available on its website, they said.
The info is outlined near the bottom of a page titled “Operational Guidelines: Payment-related issues”. Although absence from the state is listed at the top, too, as a shortcut.
Mel Cousins, a social work and social policy researcher at Trinity College Dublin, said he’s not sure if the Department of Social Protection is reading the law correctly.
The law says you’re ineligible for disability allowance if you’re not resident here, whether temporarily or permanently, he said.
But the guidelines governing holidays and such are under absence from the state, Cousins says.
“‘Resident … temporally outside the state’ is not necessarily the same as ‘absent from the State’,” said Cousins in an email last week. It could be argued that someone who’s abroad visiting a sick relative is still resident here, he said.
Pauline Tully TD, Sinn Féin’s spokesperson on disability and carers, said the two-week rule around disability payments, and other social protection payments, clearly causes hardship and distress for families.
It is important for schemes to have rules and those rules to be adhered to, she said. But “I would favour examining whether there can be exceptional circumstances clauses.”
Besides her brother’s illness, Nightingale says, her mum has been battling breast cancer. She doesn’t want to move back to the UK, she says.
She likes living in Ireland, she says. And the rules for qualifying for disability payments are also kinder here than in the UK, she says.
Choosing between spending more time with her loved ones while she still can, and her disability payment feels cruel, she says.
“People who are in work, they get four weeks, like statutory minimum four-week paid leave from work,” she says.
The decision is complicated further for immigrants who need visas to travel to Ireland. During the visa application, they often sign something saying they won’t become “a burden on the state” if granted a visa.
It is a promise that many say they take to heart. Even when they become ill or lose a partner to an untimely death, they feel reluctant to apply for government benefits, fearing consequences or retaliation.
Nightingale says she knows she’s a White immigrant from the United Kingdom and doesn’t have to face the same barriers, which is why she wanted to speak out.
“I can’t imagine, you know, what it would be like for someone perhaps from India,” she said.