Mother receives letter seeking repayment of €208 disability allowance as son had died the previous day

Brendan Bjorn died on May 17th aged just 17 years. He was born with Congenital CMV, leaving him profoundly disabled

A woman from Co Wexford has expressed her disgust and disappointment after getting a letter seeking the repayment of €208 in disability allowance because it was claimed in the week her severely disabled teenage son died.

Brendan Bjorn McGinnis died on May 17th aged just 17 years. He was born with Congenital CMV, leaving him profoundly disabled. His illnesses included severe spastic quadriplegia, intractable epilepsy, scoliosis with a spinal fusion, osteoporosis and hip dysplasia. His mother, Tracy McGinnis, provided round-the-clock care for her son, who was also non-verbal and was fed using a tube.

“The past 17 1/2 years were spent fighting for proper services - timely medical care and interventions, equipment, operations, and even respite for myself,” said Tracy on Friday. “He is the reason I became an advocate.”

On Friday morning, less than a month after his death, she received a letter from the Disability Allowance Section, Department of Social and Family Affairs, which is based in Longford. It stated: “It has come to our attention that Mr McGinnis died on May 17th, payments continued to be collected at the post office up to and including May 18th. This has resulted in an overpayment of €208.”

The letter continued. “This money now needs to be refunded to the department as you were the agent on Mr McGinnis’s claim I am writing to you for clarification in this matter.”

Tracy said reading the letter - which was dated May 30th but arrived on June 10th - was very upsetting. “Getting the letter in the post today drove home the reality that in a handful of weeks, what little social welfare remains coming in will end,” she said. “One-Parent Family, Disability Allowance, his Child Benefit, and the household benefits package all ended immediately. When I collected his DA at the post office the week he passed, I didn’t know at that time that it had ended. The payment was there and I thought it went on for six weeks. Turns out that’s only if it’s a spouse or partner.

“A few hours after my tweet of the letter, A lady rang me and referred to my tweet of the letter. She said she was from the Disability Allowance section based in Longford. She gave her condolences for the loss of my son and apologised for the tone of the letter, stating she would look into how those letters are worded. But then she reiterated that there was an overpayment and I owe the €208.

“The people on social media have been amazingly supportive of me, and outraged by this letter. As for will I pay back the money, probably so, in time, over time.”

In an interview with this paper two years ago, Tracy described the difficulties she faced as a lone parent caring for a severely disabled son. “People really don’t have the slightest idea unless they are walking in these same shoes,” she said at the time. “I wish to God that more people understood. Even doctors/GPs don’t understand.”

The past few weeks, since Brendan’s death, has been a “blur” for Tracy. “Surreal. I have nightmares about it. That is, when I can sleep. I’m utterly exhausted emotionally and physically. Losing him is a pain like none other I’ve ever experienced in my 56 years. It even hurts physically.

“He was my primary focus 24/7 for all of those years. He and my other son of course, but Brendan Bjorn’s needs were always what we had to revolve around. Our worlds revolved around him. My other son is now learning what life is like without a sibling, without his big brother. It’s just he and I now.”

On Friday evening, a spokesman for the Department of Social Protection said “the department has contacted the person concerned by phone and apologised for any upset or distress caused.

“While the department cannot comment on individual cases, the position generally in relation to a person caring for somebody in receipt of Disability Allowance who passes away is: Carer’s Allowance will continue to be paid for 12 weeks after a death; The Carer’s Support Grant of €1,850 will also be paid if it is due during this 12-week payment; Like other primary social welfare payments, Disability Allowance ceases to be made to the person when they pass away. The only exception is where the deceased person had been receiving an increase for a qualified adult dependant (eg spouse or partner) in which case payment can continue to be paid for six weeks after a death.”

Damian Cullen

Damian Cullen

Damian Cullen is Health & Family Editor of The Irish Times