Parents of disabled adults 'at end of tether' as Covid-19 reduces day centre provision by a third
AS daily life increasingly gets back to normal in Northern Ireland, parents of adults with learning difficulties feel left behind. Bimpe Archer hears from carers at the end of their tether. Bimpe Archer reports
"MY day starts at 4am with my son in bare feet standing on the driveway screaming for the bus."
Gillian's weary voice is heavy with defeat. Her boy, who is now in his late 20s, has autism and is severely disabled.
He needs "24/7 care 365 days" and she is "going on three hours' sleep at the minute".
To say it has been a hard pandemic for the Co Armagh family is an understatement.
Gillian is not her real name. Like all the parents interviewed she and her husband are eager to speak out, but wary of being identified - fearing they might jeopardise the little support they are managing to hold onto for their adult children.
During the strictest period of the first lockdown, the care package which saw her son taken by bus to an adult day centre five days a week was suspended altogether - to his extreme distress.
"I fought with them to get the care back. Only another carer told me they were providing the care I wouldn't even have known the centre was open."
Her son got his place back at reduced hours - without transport - for first two and then three days.
It is some support, but still falls far short of the level of need the health and social care trust itself assessed her son as needing.
Gillian fears the delay in restoring full-time care will turn into a permanent reduction in provision.
"They say that they're keeping the 2 metre rule and reduced hours in place for their safety. So that means I could drop him off at a pub when they open at 11am and pick him up when they close more than 12 hours later, but he can't go to a day care centre for his proper hours?'
"It's ridiculous. He's in a big classroom-sized room with four other people in it. Of course they could have more people there to make sure they got the care they need.
"I'm at the end of my tether. None of us can get our care back, our five days - what we were assessed for pre-pandemic."
She said families are also struggling with what they regard as excessive closures following Covid-19 infections.
"If two people test positive they close it down for 10 days. I spoke to the PHA (Public Health Agency) and they said that is not their policy or advice, they don't recommend isolation if someone doesn't test positive.
"The trust say that our children are clinically vulnerable, but they're not. They have developmental disabilities, not medical ones."
The Southern health trust strongly refutes these claims, insisting it is doing the best it can in difficult circumstances.
"The global Covid-19 pandemic is still ongoing and there continues to be a high number of daily cases in this local area," a spokesman tells the Irish News.
"We continue to work closely with the PHA and Department of Health to ensure our day care services adhere fully to the latest guidance.
"Our priority is to protect our Day Care service users, many of whom have a particular vulnerability to this virus.
"Currently our Day Care in Disability services continues to operate Monday to Friday at almost two-thirds (64 per cent) capacity.
"We continue to engage with the PHA, Department of Health, carers and others to review the impact of the IPC guidance on adult social care."
According to the PHA, day centres are "currently following the UK-wide guidance".
A spokeswoman said it is developing "a service remobilising pathway" for adult day care centres, short breaks and transport.
This "will include advice on a hierarchy of controls, including social distancing" and she said the agency "has been working closely with trusts, the Department of Health and families, facilitated through the Patient and Client Council".
At present "a risk assessment will be undertaken by the respective trust to take account of the specific circumstances, and if required the PHA will advise and assist with this assessment which will be done on a case-by-case basis".
However, there is widespread frustration among parents who insist with general relaxation of social distancing it is past time for their children to get the care they are entitled to.
David [also not his real name] has a daughter in her 20s with severe learning difficulties and autism.
On Friday March 20 2020 they were told her Co Down day care centre would not reopen on Monday,
"There was no working notice," he said.
"I was supposed to be going to work on the Monday and I was left with no day care. I was working full-time and had to reduce my hours."
As compensation the family were offered money for the "extra hours" to employ somebody two days a week, but that proved impossible to arrange.
His daughter's day centre has since opened to allow her three days ("max") at reduced hours.
"We were told that vaccinations would be a `game changer' - that was the word they used," he said.
"Now all of our children are double-vaccinated and nothing has changed. They still haven't re-opened up the day centres the way they were before the pandemic.
"We have done everything that was asked of us over and over again and it just hasn't been reciprocated.
"There is 50 per cent attendance at these centres, despite 100 per cent staffing rates. I think they're maintaining the status quo because they can."
David fears for the future.
"There are children at special schools now who will be transitioning to day centres any time. What will happen then?
"They have been doing this for 19 months now - and in that time the Southern Trust has put no additional temporary centres in place. They are failing to meet our children's need."
In Co Antrim, Caroline [not her real name] is "an emotional and tired wreck".
"I'm so frustrated by no movement on adult day care," she writes in an email, too upset to talk.
"My son is down to three days. He had five days as is his assessed need (1:1) from he started aged 19.
"He has severe learning disabilities, non-verbal but very active."
She too has had payments to find her own solution "but nothing equals the buildings-based and routine that goes with it".
Northern Trust said it is simply following the regulations forced on it by the pandemic.
"All our adult centres are open and continuing services Monday to Friday," a spokeswoman said.
"The current Covid-19 Guidance which requires a two metre distance rule impacts upon our ability to operate at full capacity.
"All trusts across Northern Ireland are experiencing similar challenges and we await updated guidance regarding the distancing measures, which is expected soon.
"The trust fully appreciate the difficulties the lack of access is having on service users and their families and have given assurances that as soon as the guidance allows increased capacity, the trust will implement the changes and increase availability."
It is a promise they have heard before.