A mother who cares for her two autistic sons is urging the Government to add family carers to the coronavirus vaccine priority list.
Jane Johnstone cares for her two sons Evan and Daniel - saying both need an 'awful lot of support'.
Evan is 20, and he has autism and profound intellectual disability.
On today's The Hard Shoulder, Jane explained: "He's partly sighted due to an eye disease... he has problems with his mobility.
"He's completely non-verbal."
Daniel, meanwhile, is 16 - he has moderate autism, while his anxiety-related issues have increased during the COVID-19 pandemic.
Jane said: "I'm a lone parent - I have been for the last six years since my husband passed away. It's just me and the two boys.
"When we heard there was a vaccine and then a second vaccine... that light of hope we've all been looking for and waiting for was profound for us as well.
"My concern would be we're not actually included on the priority list for carers. The carers and people with disabilities specifically aren't included on the priority list."
She said carers feel like they've been overlooked throughout the pandemic, and that their needs haven't changed.
Evan needs two carers to look after him when Jane herself isn't there, while respite and day services have decreased as a result of the COVID-19 crisis.
Jane told Kieran: "At the moment, sleep would be a big factor in our house... particularly with my older son Evan. He would go to sleep between 1:30am and 5:30am... there's been a couple of times when he has not slept at all.
"We've done a few 36-hour stints... I have to be with him, as he needs constant supervision."
She said Evan can get very "overwhelmed and frustrated" with the situation, and that his usual life and behaviour were massively disrupted in March.
She explained: "That manifests in Evan in his body... he can hit out.
"He doesn't mean to - the last thing he wants to do is hurt me or break something in the house. He would be very upset about it afterwards."
Jane's concerns
Jane is constantly concerned about what would happen if she or either of her sons had to go for a COVID-19 test or contracted the virus.
She said: "This is something that goes through my mind many times a day.
"What if I got COVID, or was told to self-isolate? I certainly couldn't go to my bedroom and say 'I'll see you when I get my test results'.
"If either of the boys got it, even getting a test would be a huge challenge for them with their behaviour and sensory issues.
"God forbid if any of the three of us needed to go to hospital, that would immediately plunge my family into a crisis."
She said that even before the pandemic she'd discussed the HSE what would happen if she became sick or injured, as it's "always a risk".
However, she said there's no "structured plan" of what exactly what would happen in that scenario.
For now, she's urging the Health Minister to recognise the 'absolutely vital' role family carers play, and is calling for carers and those they care for to be added to the vaccine priority list.
She said: "[Then] we can continue to care for the people that we care for, and that we can continue to keep them safe.
"Then maybe we might be looking at people like Evan being able to go back to their day or respite services on a full-time basis."
Government response
Also speaking on The Hard Shoulder, Finance Minister Paschal Donohoe said he's heard the 'very compassionate arguments' being made about carers accessing the vaccine.
He said he can't make a "clear and absolute answer" as to whether family carers will be prioritised, as there are many other groups making "fair arguments" that they should be prioritised.
The minister said they need to look at how much vaccine will be available and when.
He added: "Given there are so many groups who are stressing a strong case at the moment, I hope you'll bear with us to make the decision."
