Who will care for Rita when I'm gone?
A BELTURBET father, who is awaiting a diagnosis for a heart condition, says he is weighed down with the worry about what will happen to his adult daughter with additional needs if he becomes sick.
The worry is physically etched into Padraig Moran’s face.
“I’ve being doing it on my own but now I’m asking the State to provide appropriate care for my vulnerable daughter,” he told the Celt.
“It is a massive weight of worry on my shoulders. It is so stressful and it’s constantly there. I’ve been calling for help and every day waiting for something.
“I just won’t have a minute’s ease until it’s sorted,” he said.
In recent weeks, Mr Moran has been attending his GP where he is being monitored for a heart condition. He is 78. His wife, Phyllis, passed away 28 years ago.
Together, they had three daughters, one of whom lives in Switzerland, another who lives in Dublin with her three-year-old and six-month-old baby and, Rita, who is 45 and has Down Syndrome.
When Padraig, who is originally from Galway, married Phyllis they set up home in Belturbet. Rita has no grandparents, aunties or uncles on Padraig’s side living in Cavan.
Padraig has been his daughter’s sole carer since Phyllis passed away.
Rita attends day services near her home five days a week and during the week, a carer comes to her family home for an hour in the morning and half an hour every evening.
This is reduced to half an hour in the mornings and evenings at the weekend.
These arrangements have worked for Rita and her father but, as the years passed, he began to worry what would happen his vulnerable daughter if he became ill, incapacitated, or worse.
Three years ago, he began the process of finding suitable full-time residential care for Rita but today, he is no further on. A routine check-up at his GPs a few weeks ago revealed he required an ECG test for which he had to remain in hospital.
Padraig had to call his heavily pregnant daughter who lives on the far side of Dublin, who then had to pick her young child up from daycare and rush to Belturbet so someone was at home when Rita came back from her day service.
Padraig and his daughters are worried about what will happen if their dad was to become suddenly ill or has to stay in hospital for a prolonged period of time.
“Rita is a vulnerable human being, as vulnerable as a six-month-old baby,” Padraig told the Celt, “For example, if she was dropped off by the bus at the end of the driveway, she wouldn’t know to walk the few steps to the front door.
“I was sent for an ECG after my last GP appointment. If something like that happens again or I have to stay in hospital, Rita would be left standing on the street,” he said.
And Padraig explained that while immediate need is his priority right now, he is ‘worried sick’ about long-term care for Rita in the future including after he is gone.
“Full-time residential accommodation with round the clock care where Rita is being looked after and living with her peers is what is needed. Anything else and Rita won’t survive.”
Senator Pauline Tully (SF) raised their case in the Seanad recently.
ACCOMMODATION
“The HSE’s initial response to this case was to ask why his other daughters could not look after her. They do not live in the area, and it is not their responsibility. This woman is entitled to have a setting prepared for her,” Sen Tully told the Chamber.
She also said she would “love a debate” with the relevant minister on providing residential care for adults with intellectual disabilities who are still living with elderly parents.
“This should be planned for. It should not be left until the parent is too old to look after that person, causing them to be stressed and worried because they do not know what is going to happen to their child after they die,” Sen Tully said in her contribution to the Seanad.
Inclusion Ireland, the National Association for People with an Intellectual Disability, says Padraig and Rita’s case is common.
“Many people with intellectual disabilities and their family members are trying to plan in advance in order to avoid crisis situations, but at present there is no clear process to follow to apply for housing with supports and no declared priority system or declared timeframes you should expect,” their website states.
It also advises to contact your local authority and HSE Disability Manager for help with the process.
“I’ve been on this case for three years, but I wasn’t smart enough because they’ve shunned me over the years,” a despondent Padraig said. “I’ve been almost made to feel guilty for asking. The response is always ‘get your family to help’ but you can’t get them if they’re not here.”
According to the ‘Before We Die’ campaign group, there are 1,500 adults with intellectual disabilities in Ireland living with family carers over the age of 70. Of these, 450 adults are cared for by parents aged over 80. In Budget 2023, just 43 new residential places were funded.
“Rita should be a priority because there’s no second chance for her,” Padraig said. “If I’m not here no one can do anything for her. A half an hour in the evening is no good for Rita, she can’t stay here on her own.”
Cavan County Council issued the following statement about assisted living for vulnerable children of ageing parents:
"For individuals who require additional supports to live independently, supported living accommodation can be provided through a partnership approach involving the local authority, the HSE and Approved Housing Bodies.
"Under this model, the local authority or Approved Housing Body provides the accommodation, while the HSE or another specialist service provider delivers the care and support services required by the individual. This enables people to live as independently as possible while remaining integrated within their local community," the statement continues.
"The provision of supported living accommodation is based on the assessed needs of the individual and on close collaboration between housing and health service providers to ensure that both accommodation and support requirements are met."
While the Celt was in Padraig’s Belturbet home, he received a message to say that, when he goes to his next medical appointment, Rita would receive one week’s residential care in a suitable facility in Co Monaghan. On hearing this news, the worried look on Padraig’s countenance literally dissipated.
“Thank goodness,” he sighed. “That gives me peace of mind to go to my appointment, because I know if I have to go to hospital, Rita will be in safe hands.”
Less than 10 minutes later, a member of staff from Rita’s usual respite centre where she was scheduled to spend two nights soon, called Padraig to ask if he would forego the two days’ respite since they were getting a week’s worth in another facility.
“Of course, I will give up Rita’s two nights,” Padraig told the Celt without hesitation. “It’s not like I’m going on holiday, but knowing Rita will be safe is all I was looking for. Someone else can get that respite.”
The pressure on adult disability residential services in Cavan was clear. When it comes to residential bed places, managers are literally robbing Peter to pay Paul.