Parents of disabled children 'pushed to the edge' with respite care at Grace House to end

Parents of disabled children have said they're at “breaking point” and face being “pushed over the edge” as they face the closure of Grace House in November 2023.

The centre provides an opportunity for both disabled children, many with severe and complex needs, and their families to benefit from weekend and overnight respite breaks at their eight bedroom facility.

The facility is located on the ground floor of Grace House and is provided in partnership with Sunderland Care and Support (SCAS), who provide the care, which is funded by Together for Children Sunderland (TfC).

However, in June parents received a letter from TfC informing them this facility will cease to operate at Grace House from the end of November, although parents have subsequently said they've not been able to book respite beyond November 20.

Council chiefs say they are hopeful of finding a solution, but none is yet confirmed.

The Grace House situation sparked the formation of the Give us a Break campaign group who’ve held demonstrations outside of the City Hall and last month (September), ahead of a full Council meeting, submitted an 8,000 signature petition urging the Council to “recommence negotiations to provide this essential care”.

Many of the families also attended the meeting where the Council’s Labour leader, Cllr Councillor Graeme Miller, said he “felt a real sense of pain” at the situation and stressed they were continuing to work to find alternative provision.

While the Council are growing increasingly hopeful of finding an alternative building for overnight respite care, at the time of writing there is still no confirmed procurement of a new premises.

With the clock ticking down, many parents are growing increasingly anxious, including Amy Hosack who is now reluctantly considering putting her nine-year-old son Aaron into permanent care, rather than living at home.

Aaron is autistic, has ADHD, epilepsy and learning difficulties.

Amy, 30, from Farringdon, said: “Aarron can be very difficult to manage and the two night respite I get each month is just enough to give me a break.

“We’ve been offered an alternative of foster care respite but Aarron really needs to be in a care setting where there are multiple people to deal with his needs.

“If a like-for-like respite replacement isn’t found then I'm having to look at putting Aaron into permanent residential care, which is really upsetting to have to consider.

“I always thought it might be something I would have to consider at some point but not for a few years.”

Amy was keen to stress the benefits respite provision provides to siblings of those children needing care.

She said: “Aaron’s needs tend to dominate everything we do. There are many challenges caring for Aaron and so we often end up staying at home which means his younger sister, Poppy, misses out.

“The respite care allows me time to go out and do things with Poppy and for her to be a normal child.”

While the council meeting revealed “more than 15 replacement properties have already been considered in detail”, a key grievance for parents is a reference made from Conservative councillor Richard Dunn over correspondence which suggested issues about the service provision’s future were known for several months before parents were informed in June.

Amy said: “The council are looking for alternatives, but why has it taken so long? Why did they not look for something straight away?

“I accept we may now have to leave Grace House, but surely they could have extended the agreement until a new suitable building is found.”

It’s a sentiment shared by Tracy Cruddas whose 17-year-old daughter, Katie, who has cerebral palsy and is non verbal, has been receiving respite care at Grace House for seven years.

Tracy, 51, who is supported by her other daughter Amy, said: “The ending of respite care at Grace House is going to be devastating and we are going to be lost without it.

“Caring for Katie is a 24 hours a day job - it’s all consuming and the respite care is the only break we get.

“I’m so stressed this is soon going to be coming to an end that it’s really affecting my physical and mental health.

“Katie is also going to lose the opportunity to socialise with other people. She has made a friend at Grace House who she's now probably not going to be able to see.”

Katie’s respite care is paid for privately through a fund set up as part of a successful legal claim relating to her medical care during and after birth.

As such, mother Tracy says there has been a "total lack of communication" about the ending of respite care at Grace House.

She said: “Because we are not funded by the council I'm still to get anything concrete in writing about the facility ending at Grace House.”

Tracy also stressed the alternative of respite foster care or carers visiting her home "would not work".

She said: “The staff at Grace House know these kids inside out and what their very specific needs are. 

“We’ve used in house carers before and they just didn’t work out. What my and other families are currently being offered isn’t enough.

“It would be really difficult to settle with other people coming into your house. Respite care is the only way to get a break and know your child is safe.”

The campaign is being led by former Sunderland City councillor Pam Mann, whose daughter Tara is disabled and she has previously campaigned for respite care for families in a similar position.

Pam said: “As we approach November, parents are beginning to feel like this vital lifeline is being severed. They don’t know what they're going to do and this could really push them over the edge.

“Tara is over 18 but I still get respite support for 48 nights per year. If this was suddenly taken away from me I think it would send me over the edge.

“It affects people’s mental health in a way that no one can really understand unless you are in that position.

“These children are allocated a budget for the care they need and they need a like-for-like replacement."

The letter sent to parents from TfC in June cited a change in the rental rate with Grace House and increased utility costs as the reasons for the decision not to renew the agreement.

In the letter, TfC Chief executive Jill Colbert also pledged to find “alternative provision”, including “trying to buy a building which we can modify to fit the range of needs of our children”.

There may at last be some tentative light at the end of the tunnel for families with the Council's Cabinet Member for Children, Learning and Skills, Councillor Linda Williams confirming a potentially suitable building has been "identified" which is due to be discussed at the next Cabinet meeting.

Cllr Williams said: "We have identified a building which we believe could be suitable for providing new high quality short-term break provision following the changes to what has been previously available at Grace House.

"Subject to further decisions, including a forthcoming Cabinet meeting, we will make more details available as soon as we can.

"We remain fully committed to continuing to work with families and the Parent Carer Forum on meeting the needs of children who require a short break.

"This commitment includes consultation on the future design, look and feel of what could be a new centre for this important respite care.

During the last Council meeting, Cllr Graeme Miller reiterated an increase in costs as the reason behind the decision, stating the charity had accepted an offer from another business “at the last minute” to take the respite care space “for more money”.

Commenting previously on the situation a spokesperson for Grace House said: “We understand the families' concerns and the importance of short breaks for families. We support their calls for a transition to a new provision to be as smooth as possible."

A previous statement from Grace House added: “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 it for families.

“Recently we have met with a number of parents to discuss this change and would continue to encourage those who have been affected by this change to contact us at [email protected] to book a meeting.”