Families of disabled Fife adults say they have been completely abandoned during Covid.
Day centres for adults with learning disabilities and autism shut down during the pandemic, leaving many families struggling to cope.
Now some have been told they will not be returning once the centres reopen.
This is because their conditions have been reassessed as not critical enough to need the same support.
The Courier’s Community team leader Claire Warrender – who covers our Fife patch – has been inundated with calls from worried families.
Here, she speaks to some of those affected by the changes, including elderly parents left to provide care.
Stewart Pearson
Fifty-nine-year-old Stewart Pearson, from Kirkcaldy, cannot go back to the centre he attended daily for 37 years.
Stewart has dyspraxia and is non-verbal and doesn’t understand why he can’t see his friends.
He is looked after full-time by his 81-year-old widowed mum Kate, who is recovering from a fall.
Stewart previously attended the St Clair Centre, which aims to give adults with disabilities a social life.
“Everything stopped at the start of Covid and we’ve only had two letters in 19 months,” said Kate.
“There were rumours the centre was closing for good.
“It turns out it’s not closing but it is closed to us.”
It’s a strain on everybody.”
Kate Pearson, from Kirkcaldy.
Stewart enjoyed socialising with others from 8am to 3pm every day but is now bored and frustrated.
“His communication is terrible and I don’t know what he’s saying,” said Kate.
“After my fall, I fought to get some help and he now gets taken out for two hours four times a week.
“He used to go swimming or to the men’s shed with groups of friends but now he gets taken to Sainsbury’s for a coffee with a carer.
“He can’t understand why. It’s a strain on everybody.”
Sheila Ferguson
Sheila’s brother, who she did not want to name, went to the Dalgairn Centre, in Cupar, five days a week from 9am to 3pm.
“He had an active and fulfilling programme of activities which gave him a structure and pleasure during the week,” she said.
“Now it’s been decided the service can only be provided for clients with complex needs and unfortunately he does not meet the criteria.
My brother is lonely and isolated.”
Sheila Ferguson from Cupar.
“He goes out for walks but has been subjected to children shouting at him.
“And he now tends to loiter to watch the world go by.”
Sheila works full-time and cannot give her brother the company he craves.
“He’s lost a major resource from his life and I feel strongly the pandemic has been used as an excuse to terminate a service.
“My brother is lonely and isolated. He doesn’t meet the criteria but nobody can tell us what the criteria are.”
Jillian Brown
Like Stewart, Jillian, 54, attended the St Clair Centre in Kirkcaldy from Monday to Friday.
There, she enjoyed group activities including swimming and music.
However, she won’t be returning and will instead receive eight hours of support a week.
“She’s been told she won’t get back,” said mum Frances, who is 87 and partially-sighted.
“For 15 months I had no support at all so eight hours is better than nothing.
“Jillian lost a stone in weight during those 15 months because she was so miserable.
“She can’t go out on her own. She has epilepsy and has around 12 absences a day.
“I can’t even let her use the kettle on her own.”
Frances said Jillian had been going to the St Clair Centre since she was 16.
“The people there were her friends but now they’re walking on the Prom for three hours and if the weather’s bad they cancel it.
“Eight hours a week instead of 30 isn’t enough and it really riles me.”
Tommy Sinclair
Tommy Sinclair, 45, has Down’s Syndrome and had been attending the St Clair Centre three days a week.
Mum Elma said: “The centre closed a year past March and Tommy hasn’t had anything since.
They need to come clean and tell us what’s happening.”
Elma Sinclair, from Kirkcaldy.
“He’s not classed as being critical and I’ve only had two phone calls in all that time.
“We’ve now been told Tommy’s not getting anything at all.
“He seems to be all right but if anybody asks, he says he’s missing his friends.
“They need to come clean and tell us what’s happening.
“Regardless of what the outcome’s going to be, I would rather they were truthful.”
Lesley
Lesley asked us not to use her full name but says her 29-year-old son has been struggling since his support was cut.
“I can’t really describe the effect on him,” she said.
“There’s a huge difference in his behaviour. He can’t verbalise his frustrations and doesn’t understand social norms.”
She added: “Throughout his life people have worked hard with him to find other ways to get people to understand what he’s looking for.
He’s in one of the most vulnerable groups in society and it feels like all the doors are closed.”
Lesley, mum of service user.
“All of that’s been taken away.
“Now we have a lot of very aggressive situations and he feels a bit like a prisoner in his own home.
“He’s tried to leave a few times and he’s not safe.
“And in some ways he’s become withdrawn – he retires to his bedroom and goes to bed in the afternoon.
“That was never him.”
Lesley’s son had been attending a day centre five days a week for seven hours a day.
“Now we get little bits of support for him on four days and it’s no longer the group activities he enjoyed.
“He’s in one of the most vulnerable groups in society and it feels like all the doors are closed.”
What has local MSP Willie Rennie said about the issue?
North East Fife MSP Willie Rennie said many people battling with special needs and learning disabilities were being let down.
“The pandemic has imposed an enormous burden on people and families who already found it difficult to access the services they need,” he said.
“Now, many of the local facilities that were reduced or halted through lockdown simply haven’t returned. So its’ no wonder many feel abandoned.”
And the Liberal Democrat MSP said the partnership was “storing up a powder keg of problems for health and social care services in the future.”
“There are a great many people and organisations in our communities that have the know-how and want to support people struggling with special needs or learning difficulties,” he said.
“But first the resources and funding that has been whittled away by our authorities must be brought back online.”
How have Fife Health and Social Care Partnership responded?
Fife Health and Social Care Partnership offered little in the way of hope for many affected families.
But it says it is still considering how best to safely remobilise services.
Rona Laskowski, head of complex and critical care services, said day centres closed to ensure infection prevention and control measures were in place.
But she said families who were identified as being in critical need continued to receive support at home to reduce the risks to the most vulnerable people.
“Many of the service users, as part of their general support arrangements, require access to the specialist facilities we have in the day centres,” she said.
“However, alongside that, a significant element of activities we support people to access are in mainstream community facilities.
“We are currently considering how best to safely remobilise services, including reintroducing people to the day centres.”
She added: “We will continue to communicate with our service users and families to ensure they are fully informed of plans at the earliest opportunity.”