The news that TV personality Katie Price is considering moving her disabled son Harvey into residential care because she is finding it increasingly difficult to cope with him, has struck a chord with many people.
The disability rights campaigner and mother-of-five said Harvey, who is 16, sometimes scares her other children and “is a danger to himself”.
The BBC’s Victoria Derbyshire programme heard from three other families with disabled children who face similar dilemmas.
‘We don’t regret it’
“It was a really difficult decision,” Ros Aspinall says, about the choice to move her daughter into residential care.
Stacy was born with a part of her brain missing.
She is 31 this year but has the mental age of a six-month-old baby – she cannot walk or talk.
“She needs 24/7 assistance. There is the continual care – change of clothes, change of nappies,” she explains.
“And when you’ve got other children, trying to balance the care your child with special needs has with them – no matter how hard you try – your other children do lose out.”
Stacy stayed in the family home until early adulthood – but as time went on, caring for her became physically more difficult.
Due to a lack of facilities, she needed to be carried upstairs and hoisted into the bath.
“That’s why we quickly came to a decision as a family that we needed help,” she says, admitting she was scared at first by the thought of residential care.
But she does not regret her decision.
“We know when she’s [around staff], she smiles, she’s happy. So we know she is well cared for.”
Stacy’s sister Abi, 25, also says the staff provide care that goes beyond what the family were able to give.
“She goes to Disneyland, abseiling, swimming lessons – always got something on the go.
“That’s not something we could provide for her.”
‘Thought of residential care frightening’
Lyndon and his wife have both given up work to take care of their son.
Matthew, 14, has a rare disorder called Phelan-McDermid Syndrome and needs “two-to-one” care to manage his challenging behaviour – which means two carers at all times.
Lyndon says he can “absolutely relate” to Katie Price, as, like Harvey, Matthew has broken countless iPads and TVs.
Originally Lyndon tried respite services – which allow parents a break from caring for their child, often for a day or two at a time.
“But you get a mix of children who don’t always get on,” he explains. “They use agency staff too – so you don’t always know who’ll they’ll get, and that will cause anxiety for children.”
Instead he has organised personal carers, who look after Matthew and take him to activities.
He says this could be another option for Katie Price.
Lyndon does not want Matthew to go into residential care, describing it as “frightening” as he would miss his son and worry about him.
He says it may be a possibility one day, but fears it would mean his son would have to live many miles away, as there are few residential care homes in Devon and Cornwall.
But he says whatever he decides, he will encounter negative comments.
Some parents have told him his son should be in residential care so he and his wife can have a life.
Others have told him they “don’t care about [Matthew], because we put him into respite”.
He says no one should judge “until you’ve been there and done it”.
How can residential care help?
Emma Horne, a national director at Action for Children, said children as young as seven were placed in their residential homes, which operate throughout the UK.
She told the Victoria Derbyshire programme the charity always looked to ensure families were included from the start, and that children were allocated key workers who were with them throughout their stay, where possible.
For children such as Katie Price’s son Harvey, who can show episodes of violence, Ms Horne explained that the job of carers was to help them understand and manage the triggers.
“With some children, three members of staff are working with them,” she added.
The children can stay in residential care until 19, when it becomes “really critical” to help them transition into life back with the family, or in adult services placement.
But for others the best solution may be a respite service – where they stay three or four nights a week, before returning to their family, she said.
‘He has absolutely thrived’
Debbie Andrioli’s son Matthew was diagnosed with Asperger’s syndrome when he was four.
“As he got older he got severe anxiety about going to school,” she explains, due to the class sizes, noise and unpredictability of lessons.
“He was refusing to go to school in the mornings, which impacted on his brother. My husband had to change his work hours.”
Now Matthew boards at a residential school, which she says is “absolutely fantastic”.
“His quality of life has improved tremendously.
“When he was at home he had no social life, he didn’t want to go out anywhere, he was too anxious. Since he’s been at the residential school he’s absolutely thrived.
“He’s done the Duke of Edinburgh Award, he’s learned life-saving, he’s been on trips to Brussels and Edinburgh.”
And, she explains, the support the school is able to give him will greatly benefit his development.
“He gets support in social and communication skills; speech and language support,” she adds. “It’s available for him as and when he needs it.”