Parents of disabled children react to replacement Sunderland respite care building agreement

Parents of disabled children have welcomed news of an agreement to purchase a building to replace respite care at Grace House but have said it's “far too late” and has left them in an interim period “without suitable support”.

Respite care at Grace House is due to end in November with parents having been offered alternative temporary provision in the form of financial support to hire personal care assistants to look after their children, many with severe and complex needs, in their family homes.

Parents say having to leave their homes with their other children is “not practical” and would not provide suitable respite, as well as isolating children in care from socialising with other youngsters.

The City Council has always stressed it was looking to find an “alternative building” and last Thursday (October 12), following a Cabinet meeting, confirmed an agreement was reached to purchase an identified building.

A spokesperson said: “We can confirm we have identified a property 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.

“At our meeting today, the Cabinet agreed to purchase this property and further details will be confirmed in due course.”

Nurse Emma Hubbard, 47, is concerned about the time it will take for any new building to be up and running.

Her son, Sam Warren, 13, is autistic, has significant learning disabilities, ADHD and suffers from epilepsy. He has been attending respite care at Grace House for the last year after “being on the waiting list for several years”.

Emma said: “It’s a relief and great to hear the Council has been given the go ahead to purchase another building but I wish this could have been done months ago.

"It's going to take a long time to get any new building up to standard.

“A lot of these children have serious physical disabilities which requires the installation of specialist equipment.

“The respite care staff at Grace House have been offered redundancy packages and many, understandably, have now got jobs elsewhere.

“Finding experienced staff with the necessary skills isn’t easy. They know the children inside out and the children know them and feel comfortable with them.

“This will all take time and so, despite the announcement, as of November 20, myself and other families are still going to be left without suitable respite care.”

It’s a sentiment shared by Pamela Hodgson, 50, whose son Luke, 15, is also autistic, has ADHD and learning disabilities.

She said: “When I heard the news about the new building my immediate thought is that it's too late.

“It’s going to take time for any sale to go through and then more time to get everything done to meet the needs of the children.

“Who knows how long this will take and we still don’t know where it is.”

In the previous full council meeting Conservative councillor Richard Dunn referenced correspondence which suggested issues about the service provision’s future were known for several months before parents were informed in June.

The delay in agreeing to procure a new building was highlighted by Laura Grainger, 38, whose son Brendan, 15, has Lowe syndrome which affects his mobility as well as some of his vital organs.

Laura said: “It’s welcome news but it’s too late. It should have all been sorted well before now.

“It’s going to take months to get everything ready for the children. In the meantime I’ve been offered a budget to pay for a personal care assistant to come into my house but it's not the same as respite care. 

“We took Brendan to Grace House on Saturday and he was so excited as he thought he was going to be staying overnight.

“My other son Lucas was on the waiting list for Grace House and so hopefully this will be transferred to any new building.”

Tracy Cruddas, whose 17-year-old daughter Katie has cerebral palsy and is non verbal, is concerned as to whether her daughter will be offered a place at the new facility after citing what she felt was a “total lack of communication”.

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.

Tracy, 51, said: “We pay privately from Katie’s legal fund, and as such we have yet to receive anything official in writing that respite care is ending at Grace House.

“She has been going to Grace House for seven years but it feels like we are just going to have to find our own solution.

“By the time this new building is up and running, Katie may well be 18 and no longer eligible. I will believe it when I see it.”

Grace House currently provides an opportunity for both disabled children 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.

The letter 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.

This was reiterated during a Council meeting by Cllr Graeme Miller who said the charity had accepted an offer from another business “at the last minute” to take the respite care space “for more money”.

It was a situation which 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”.

Desperate families spoke to the Echo about how the decision would “push them to the edge” and was having a negative impact on their physical and mental health as well as a detrimental effect on their other children’s wellbeing.

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.”