Tracy McGinnis, who was a full time carer for her son Brendan Bjorn, received a letter from social welfare ordering her to refund a disability payment of €208 she had collected the day after the 17-year-old died.
McGinnis, from Wexford, thought that the six-week grace period on the disability allowance, which is given to spouses, civil partners or cohabitants of deceased disabled people, also applied to her.
Speaking to The Times, McGinnis said “I can’t imagine even in two weeks I’d be fit for job-seeking, not after over 17 years of my life devoted to my son”.
The letter was posted on social media and caused outrage. It led to an official apology from Heather Humphreys, the social protection minister, who described it as “tone deaf” and a mistake. Humphreys has confirmed that McGinnis does not have to refund the money.
The welfare payments that McGinnis has lost were her only income. In a proposal sent to Humphreys and Anne Rabbitte, the disability minister, McGinnis has called for a reform of the law.
At present a disabled child cared for in the family home is moved from domiciliary care allowance to disability allowance when they turn 16. In most cases the parents continue to act as the child’s agent and collect payment on their behalf, as McGinnis did for Brendan.
In the event of the death of a disabled child, if they are under 16 their support continues to be provided to the agent for three months.
If they have passed their 16th birthday, however, the support to the agents ceases.
In 2017 Tracy spoke to the Irish Sun saying she was at her “wits end” trying to find suitable accommodation for Brendan, who was just 12 years old at the time, and her younger son Declan then 8 years of age.
She said the house was not safe and that birds were flying around the upper level due to the construction on the house not being finished.