Watch as families of disabled children say closure of respite care at Sunderland's Grace House will 'push them into crisis'

Grace House currently 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, last month parents received a letter from TfC informing them that this facility will cease to operate at Grace House from the end of November.

Parents have now set-up the Save our Respite Campaign Group and contacted the Echo for support in a desperate bid to see the decision reversed and for the respite care to remain at Grace House “at least until another suitable building is found or a new facility built”.

Stacey Smith’s daughter, Ellie-Mai Grant, 14, is wheelchair bound with multiple conditions including the neurological disorder lissencephaly, which limits her mobility, epilepsy and psoriasis.

Stacey, 32, from Thorney Close, said: “There have been periods in the past when Ellie has resided in Grace House, but she currently goes there four nights a month for respite care.

“She needs care 24/7 including regular position changes, use of specialist equipment and administering medication. I literally don’t sleep when tending to her needs.

“I don’t think she would cope with having to go elsewhere. She has built relationships with staff at Grace House and when she’s there I know she is safe.

“It’s also a lifeline for me and it’s super important that this service is maintained. It also allows me a chance to get some sleep and recharge as well as being able to dedicate some time with my little boy who is six.

“This move will just push families into a total crisis.”

It’s a sentiment shared by Deborah and Brian Charlton who are guardians to their grandson Ben, 13, who is autistic, non verbal and has attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD) and suffers from anxiety.

Brian, from Castletown, said: “It took Ben so long to get used to Grace House but now he loves it. He is settled and we feel safe and secure when he's in there.”

Ben currently spends three nights a month at the respite care centre.

Brian added: “By the time Ben goes in for his respite care we are totally exhausted. It’s a lifeline we look forward to and I’m not sure how we would cope without it.

“Deborah recently had an operation and Ben was able to spend some time at Grace House while she recovered.

“I don’t know what we would have done in this situation without it.”

Deborah, who also volunteers at Grace House, added: “Ben really struggles anyway and he simply wouldn’t be able to cope with having to change and go elsewhere.”

Jade Powney, 32, from Houghton-le-Spring said she has been left “devastated” at the impending closure of the facility.

Her son Tyler, 14, is non verbal autistic, has Down syndrome and suffers from epilepsy. Tyler also needs to be fed by a gastronomy tube.

He has currently been allocated 42 nights annually for respite care at Grace House where he has visited for the last eight years.

Jade said: “Tyler loves going to Grace House and has a great rapport with all the staff and it gives him an opportunity to associate with other children.

“Grace House is his safe place where he feels comfortable. I want the very best for Tyler and need to know he is safe at all times.”

Like other parents in the campaign group, the facility also provides respite for Jade to recharge and look after her own wellbeing.

She added: “Respite gives me a chance to recharge my batteries and I’m devastated at the prospect of this being taken away. I feel I may struggle or even worse.”

A previous statement from TfC cited a change in the rental rate with Grace House as the reason behind the decision.

The same reason was also cited in a letter sent to parents.

Chief executive Jill Colbert said: “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.”

Mrs Colbert also pledged to find alternative provision “including trying to buy a building which we can modify to fit the range of needs our children”.

However, parents are adamant that the current facility at Grace House needs to be retained “at least until a new facility is opened and fully operational”.

Brian said: “It could take months to find and fit out a suitable building or even years to build a new facility. We can’t have an interim period where we don’t have access to this respite care facility.

“We can’t afford to wait. We need access now.”

Parents say they received a subsequent letter from TfC to attend a meeting on Tuesday June 27, where they say they were given assurances that alternative respite provision was being sought, including a potential option of respite care in their homes.

However, parents in the group say this would not work and are angry that, due to the letter being sent two working days before the meeting date, many had not received notification in time. 

Stacey said: “If I had someone coming into my home I just wouldn’t be able to switch off and it wouldn’t provide the respite I need.

“Sending someone into my home overnight is not respite.”

Brian added: “When Ben’s at home he either wants me or his grandmother. He simply wouldn’t cope with someone else coming into the house.

“It will be impossible to get a break if it’s a case of care coming into the home. The children need to go into respite so we can recharge.”

The campaign is being backed by former Sunderland City councillor Pam Mann, who herself has a disabled daughter and has previously campaigned for respite care for families in a similar position. 

Pam said: “When the lease ends in November there's currently no definite provision in place for short break respite services.

“This news is devastating. The service is a lifeline for parents. It is the only support and time out that these parents get. 

“Parents are looking after children 24/7 and it is the Local Authority’s statutory duty to provide short break respite.”

Pam cited the Children’s Act 1989 which states the Local Authority “must provide, as appropriate, a range of "day-time care in the homes of disabled children or elsewhere” and “overnight care in the homes of disabled children or elsewhere”.

In this instance, as long as home care is provided during any interim period, although it may not be deemed a satisfactory solution, it would fall within the regulations of the Act.

Responding to the launch of the Save our Respite Campaign, TfC chief executive Jill Colbert said: “We are very aware of the concerns that have been raised and are continuing to inform, involve and consult with parents and carers on alternatives for Grace House. 

“We know that it was very short notice to attend the meeting last week and will be offering a follow-up meeting for those who couldn’t make it.

“We are continuing to work hard to find alternative care for all of the children and understand how upsetting the news is for parents and carers. 

“We remain open to considering any proposals that could help us to meet the needs of our most vulnerable children.”

A spokesperson for Grace House added: “Grace House was set up to support disabled children, young people, and their families, and like all organisations we adapt to meet the changing needs of those who we help and the social care landscape. 

“This has meant on the Grace House journey we have supported the delivery of short breaks in partnership with SCAS. 

“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 it for families, and we support their calls for a transition to a new provision to be as smooth as possible. 

“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.”

Families in the campaign group are still hopeful a solution can be reached and respite care can be retained at Grace House.

Jade said: “I’m absolutely devastated at what is happening and I hope a solution can be found urgently.”