The lack of autism-specific respite care for families has reached crisis point, according to an autism charity in the North West of England.
Autism Together, which employs more than 1,000 people and supports more than 400 individuals with autism, said the situation had become so severe that social workers had been ‘begging’ it for access to emergency placements for people with autism who were in crisis.
Robin Bush: social workers “beg for our help”
The charity, based in Wirral, also said that bookings for its services were being made two years in advance.
“It’s incredibly frustrating”
Robin Bush, the organisation’s chief executive, said: “We’re receiving calls roughly every second week from ‘’. We want to help – and in the past we could – but our unit is so fully booked that it just isn’t possible.
“It’s incredibly frustrating as our staff are highly trained autism practitioners and we are well equipped to cope with emergency admissions.”
The charity said its admissions team is routinely having to turn away emergency cases and that in the past it would have been able to accommodate many of these. Robin Bush blamed a near-£1 billion shortfall in social care funding, which has seen council chiefs say they are struggling to cope.
He said: “We know there’s a shortfall nationally of nearly £1bn in social care funding. We’re seeing this play out locally with the closure of well-established, council-run respite provision.”
Likely to worsen
At a local level, Bush said that capacity issues are likely to worsen in late autumn, when, for instance, the 20-bed council-run respite unit at Girtrell Court in Wirral is replaced by a new eight-bed, privately run unit at Tollemache Road in Birkenhead.
Autism Together runs The Ferns, one of the only purpose-built, autism-specific respite care units in the region. This seven-bed unit currently serves around 75 families, who receive respite funding packages from their local authority that they use to pay for overnight stays for their family member with autism. Families are advised to book up to a year ahead, although bookings are already being taken now for popular dates in 2018.
The charity said the system is already under pressure, but that problems arise when social workers, largely from the North West of England, are looking for emergency placements. This may happen if someone with autism is endangering themselves or others, or if an existing residential placement has broken down.
The charity has launched a campaign to raise funds to build two additional rooms at The Ferns. This would increase its capacity for respite care by 20 per cent, or 730 additional bed nights per year.
Andy Ashbridge, whose son Jack, 16, has autism, behavioural issues and obsessive compulsive disorder and who uses The Ferns for one or two nights a week, said that he feared for the future of respite services: “There are many children coming up through the system – quite a lot of them with severe autism – and there’s going to be nowhere for them to go. It’s a time-bomb waiting to go off.”
“Can’t cope” without respite care
He added: “As a family you can’t cope without respite. You just cannot do it. It’s not possible. Unless there’s a light at the end of the tunnel, you just wouldn’t be able to cope.”
Paul McFarlane said his son Billy, 18, has 45 nights a year of respite at The Ferns, but at one point respite was stopped because the cost had not been approved by the council. “It put enormous pressure on us and our marriage and caused a lot of pain in our house. Having respite basically means we can, for that short time, have a normal family life,” he said.
John Munn’s son Alexander, 22, stays at The Ferns every weekend. He said: “I can’t imagine what parents do if they are told they have nowhere to send their son or daughter. If they took that respite away I dread to think what effect it would have on us – the family would go into freefall, I think. He loves going to The Ferns – we love him going – and we have a break.”
Published: 22 July 2016
