Grace House: Sunderland parents 'helpless' as council ends respite service for disabled children

Parents of children with disabilities have said they do not know how they will be able to cope when service offering them vital respite closes.

For many years, Sunderland's Grace House has hosted weekend and overnight respite - allowing families a break from their caring duties.

However, the service, which is funded by the body Together For Children, working on behalf of Sunderland City Council, is set to end in November.

The council said it faced what it calls a "substantial cost increase" from Grace House, adding that the charity had required it to match an offer it had received from another organisation for the space used for the respite service.

On Thursday 27 July, families who use the service gathered at Sunderland City Council protesting the end of these respite provisions.

• Video report by Helen Ford.

Donna Robson and her daughter Jasmine were among the families at the rally. Jasmine has cerebral palsy ADHD and epilepsy.

Ms Robson said the service is a life line for her and her family and without it, they do not know what they are going to do.

She added: "It helps us be able to cope with Jasmine.

"Having to look after Jasmine - she's a 24/7 job and it's hard work and going to the respite means that I can get a break and means that she can socialise with friends and have fun.

"Without Grace House I will lose my sanity, it's going to be so hard."

Ms Robson, who also has a son who is autistic, said the respite service allows her to spread the care between both her children.

Sunderland City Council said it has remained open to pursuing a new agreement and is paying an increased rent for the time it has been allowed to stay in the Grace House building up until November.

Victoria Brown, Grace House chief executive, said: "Grace House has provided the setting for Sunderland Care And Support to deliver short breaks for several years, however earlier this year we were informed that SCAS would no longer be providing that service. 

"We are not a part of the planning for the future of that service, but we understand the importance of the service for families, and we support their calls for a transition to a new provision to be as smooth as possible.

"Grace House will continue to provide all of its services which include youth groups, work experience, lifeskills, counselling, groups for 18+ years, gardening activities, pre-school groups, parent support group, holistic therapies, to name a few."

The rally, held yesterday by the parents concerned, was organised as part of a campaign called "Give Us a Break".

The campaign Facebook page currently has almost 500 followers and 400 likes.

Organiser, Pam Mann, said she feels the children who use the respite service are being "fobbed off".

She added: "It's always about money.

"Our children, because they've got such specialised needs, need the most specialised care. The most specialised care is the most expensive care.

"What they're doing is fobbing our children off to foster carers, and to charities instead of getting a grip and providing a venue"

It comes as Sense, a national charity for disabled people, have released a report looking at the impact of caring for loved ones.

It carried out a survey of 1,000 people who are looking after a disabled adult - and it found large numbers of people feeling exhausted or burned out.

Around a third of respondents said they spent 48 hours a week or more providing care.

The charity is calling, among other things, for more respite services.

The charity's chief executive, Richard Kramer, said: "We know that across the country family carers are struggling to access the short breaks that they are entitled to.

"That leaves them feeling burnt out and exhausted. Families are providing round the clock care for their loved ones but it's physically and emotionally draining.

"There needs to be greater public recognition of the role of carers, but words aren't enough because without their support, the health and social care system will collapse.

"We’re also calling for long term investment in short breaks so that all carers can get a break from caring."

In a statement a Sunderland City Council spokesperson said: "Short Break provision Grace House has been home to the short break service for children with complex disabilities provided by Sunderland Care and Support Service on behalf of Together for Children, for a number of years.

"We were informed by the charity that they were approached by a company willing to pay a higher commercial rate for the space that is used for the service, which meant that unless we matched the increased rent, and increased costs of utilities driven by the cost of living crisis, we weren’t in a position to stay there.

"We have written to parents and carers to let them know that sadly this arrangement will come to an end at the end of November this year.

"We understand the impact this news will have on families using the service, which is why we have written to them to explain the situation and reassure them that we are working hard to find alternative provision, including trying to buy a building which we can modify to fit the range of needs our children.

"We know that our families will need access to alternative services to meet their individual needs and we are working hard on proposals for creative support which we’d like parents to shape and we’ll share those further in the coming weeks.

"In the meantime we would like to thank Grace House for their support to our children and families over the years."

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