OAP parents caring for children with special needs fear future in face of cuts including Sheffield daycare
“We’ve not got no lives. We’ve given up our lives to look after our children”
Elderly parents who care for their adult children with special needs fear for the future amid council reviews into what their family’s care packages will allow.
Sheffield Council is carrying out reviews across the city, claiming care package assessments have not been ‘consistent’ or ‘proportionate’ for value for money.
Typically, care packages for adult SEND children are individual and feature elements of daycare, including transport there and back, some overnight stays to give carers respite, care visits at home, and sometimes one-to-one supervision.
They are largely paid for via the child’s benefits.
But some concerned parents fear the reviews will see their packages slashed to save cash - and families are expected to pick up the bill if they want to maintain their current arrangements.
They are urging council bosses to reconsider the cuts.
Louise Harrison, aged 61, whose son, Sam, 28, is among those concerned about potential cuts.
She said: “We’ve given up our lives to look after our children.
“I’ve not had one weekend with my husband since Sam was born. And I don’t blame Sam. It’s just the way it is.
“My own wedding day sending Sam to daycare, going to the registrar’s office, having fish and chips quickly, then it was time for Sam’s bus home.
“We do this out of love and commitment, and because we want our kids safe.
“These cuts are going to lead to a family crisis in the long term, when they need to find these children residential care, and that will cost far more than five days a week at the daycare.”
Matt Bowsher, Strategic Director of Adult Care and Wellbeing at the council, said all cases are “individually assessed according to their own financial circumstances,” and all changes are “in line with our Fairer Charging policy and our duties under The Care Act.”
He said: “We know that any change to the financial contribution that families or individuals must make can be very stressful, especially when they are also caring for loved ones.
“We discuss any care package changes with individuals and their family or carers and we’re here every day on the phone, and in person if needed, to help people with their questions about financial assessments.
Daycare fears
The only respite for many of the elderly parents of dozens of autistic and SEND adults in Sheffield is the time they have alone while their children are at daycare.
Real Life Options is a charity in Attercliffe where adults with complex learning disabilities make friends, go on trips and live a fuller life.
But just as importantly is the break it affords their carers - namely, their elderly parents.
The average age of users at Real Life Options is between 30 and 50. The average age of their parents is 60 to 70.
One of them is widow Sylvia Crapper, who at 87 cares for her disabled daughter, Julie, 67.
“She wears herself out worrying about me,” said Sylvia.
“At home she constantly holds my hand as I walk room to room.
“She will not let anyone else look after her - it takes a long time to calm her down if something changes.”
As she approaches her 90s, some of the only time Sylvia gets alone is the few hours when Julie is at Real Life five days a week.
While Sylvia rests or catches up on chores, her daughter enjoys day trips for swimming, meals out, canal walks, farm visits and shopping.
But this week, many of these retired parents say they have been told by social workers reviewing their packages that their allocation at Real Life could be slashed from five days down to two.
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“What good does two days a week do me?” said Sylvia.
“My social life will be over. Now, on those other three days, I might not even leave the house.
“You think as you get older you would get more help, not less.”
After dropping their children off at Real Life on September 8, six elderly mothers met The Star to share how they are anxious about the future.
They love their children and wouldn’t change a single thing about them - but they each say they have not had a true rest in 30, 40 or even 60 years.
And now, potential Sheffield City Council cuts to adult social care stand to reduce their quality of life as much as their children’s.
“I will just be stuck at home,” said Sandra Crawshaw, 73, whose daughter Samantha, 46, is non-verbal.
“The centre has been a god send. Sam has come along in leaps and bounds.”
Further, losing days at Real Life would represent drastic change in routine and social norms for these disabled, autistic and SEND adults - changes that translate at home into prolonged episodes of emotional dysregulation, distress, frustration, and even physical attacks. It’s just another fact of life the parents take in their stride as an act of love and understanding.
“When our kids come home the store of their emotions and frustrations from not doing their routine come out. They kick off, and it can be all night before they calm down,” says Helene Guest, 63, of her son Callum, 31.
“I’m 63, but I feel 93.”
“I’ve not had a night’s sleep since Sam was born,” agreed Sandra.
Sheffield City Council says there are no cuts to day centres themselves planned.
Instead, it said the reviews are because standing care packages assessments have not been “consistent” or “proportionate” for value for money.
In contrast, many parents say they feel no compassion from the council or social workers.
They also feel there has been little to no communications from the council, and are unable to get through on helplines.
“They say, ‘we just want to find the best package’ before cutting our allocation down to the point we have no quality of life,” said Helene.
“All they care about is cuts and money.”