Sunderland parents call it a 'kick in the teeth' after learning disabled children may not get respite care places they campaigned for

Parents of disabled children who've spent the last eight months campaigning for a new residential respite care home feel “angry and let down” after being told their children may not get a place at the new facility.

The families, whose children have severe and complex needs, were left “devastated” when they were told in June that respite provision at Grace House would cease to operate from November (2023) after the Council could not reach an agreement following a rise in rental rate.

The situation led to months of stress and anxiety as “desperate” parents faced the uncertainty of how and when they would get their “lifeline” of residential respite support.

It led to parents forming the Give us a Break campaign group which lobbied the Council, organised demonstrations and collected a petition of over 8,000 signatures  

Last month, parents thought there was “light at the end of the tunnel” when the Council announced the purchase of Red Gables, a five-bedroom detached property in East Rainton, with the hope that a new permanent respite facility would be up and running by autumn 2024.

On Tuesday (January 23) the families were invited to a meeting at the Sandhill Centre in Grindon, where they were asked to provide an input into the design and refurbishment of Red Gables to best meet the needs of their children.

However the meeting, which was organised by Together For Children Sunderland, didn’t turn out as positive as anticipated for parents whose children had been attending Grace House.

One of those at the meeting was Pamela Hodgson, whose son Luke, 15, has ADHD, is autistic and has severe learning disabilities.

Pamela, 50, said: “They showed us a video of Red Gables and spoke about plans of what they were going to do.

“It looked really nice and they then asked us about the design and what we would like to see in terms of things like the colour of the bedrooms, the garden layout and any play areas.”

It was at this point Pamela asked if Luke definitely had a place at Red Gables.

She said: “They said there was no guarantee that children who had a place at Grace House would get a place at Red Gables.

“We were told that children’s needs change all the time and that all those who attended Grace House will now need to be reassessed along with children on the waiting list and so they may not get a place.

“I feel really angry, frustrated and let down. The whole point of the campaign was to ensure we have respite for our children and then Luke’s place may end up going to someone else.

“We’ve been through so much stress and turmoil in the last year. Luke had been assessed as needing respite care and I really feel that the children from Grace House should be given priority for places at Red Gables.”

Jade Powney, 32, from Houghton-le-Spring was also at the meeting. Her son Tyler, 15, has Downs Syndrome, epilepsy, is non verbal and is autistic.

Jade believes news that Tyler may not get a place is contrary to what they were originally told.

She said: “I was furious when I left the meeting and it feels like a real kick in the teeth. I now have more months of stress to see if Tyler gets a place.

“We were originally told that if a new building was found then our children would just transition there from Grace House.

"After all the campaigning I have done, it just feels like it could all be for nothing.”

It’s a sentiment shared by Laura Grainger whose son Brendan, 15, attended Grace house. Brendan has lowe syndrome, which results in him using a wheelchair, is fed through a tube in his stomach and is non verbal.   

Laura said: “To hear that Brendan may not get a place at Red Gables is really disappointing. It feels like we had hope and that has now been taken away.

“It just feels like one minute we are up and the next we are feeling down. The meeting has really knocked us and I just feel that after all we have been through, there should be some priority for children who had places at Grace House.”

Parents who attended the meeting said they were also concerned about being stuck with alternative interim care packages such as personal care assistants coming into people’s homes.

Some families have even sought alternative residential care, with their children now attending The Ark respite care centre in Redcar, which is a two hour round trip.

Jade said: “They said in the meeting that families have new support packages in place which they may wish to stick with, but when I accepted my PA, I made it clear this was a temporary arrangement until a new short breaks provision is in place.

“My PA is great, but I just don’t get the same respite provision I was entitled to, which was three nights a month.

“It was my lifeline, but in the last three months I’ve only had two nights of respite. I just feel like I may be left with nothing again.”

Laura added: “We accepted a personal budget which can be used to fund days out with Brendan and his brother Lucas, who also has lowe syndrome.

“It’s better than nothing, but it certainly doesn’t give me and my husband respite and is not a permanent solution.”

After being informed that respite care at Grace House was to end, the families enlisted the help of former Sunderland City Councillor Pam Mann, to form the Give us a Break campaign group.

Pam, whose own daughter Tara is disabled and has previously accessed respite care, said: “The families thought there was light at the end of the tunnel and are now wondering if their fight was for nothing. 

“These children had already been assessed as needing respite care and we understood if a new premises was found, this arrangement would be transferred across.

“To find out their children aren’t guaranteed a place feels like a final nail in the coffin. 

“They're furious and feel absolutely crushed.  

Responding to the situation, Together for Children Chief Executive Jill Colbert OBE, explained it is a statutory requirement for all children to be assessed or reassessed before they can access the new facilities that will be available at Red Gables.

She said: "We continue to work alongside families as we look to make Red Gables the best it can be and continue to make real and positive differences to the lives of children and families with complex special educational needs in Sunderland.

"As part of this, we have a statutory duty to re-assess the needs of all children and young people with complex needs who access short breaks in their various forms, not just those who have previously attended Grace House.

"It is an Ofsted requirement that those children and young people who meet the criteria for overnight short breaks have an up to date assessment of need; without that, it would not be possible to stay at Red Gables.

Mrs Colbert also stressed retaining alternative provision was a choice.

She added: "It was highlighted in the meeting with parent/carers on Tuesday that some parent/carers may feel that they are better supported by the alternative support package in place which is their right. "

A planning application has  been submitted to convert the £1.7million Red Gables into a respite facility.

Subject to the planning process, design and fitting out works, and permissions from children’s services watch-dog Ofsted, it's hoped the property’s conversion could be completed and hosting its first children and families by autumn 2024.