Trudie and Malcolm Ray, receive respite at The Squirrels centre in Rushden one night a week and one weekend a month as part of the residential short breaks contract.
Their 16-year-old daughter, Nikita Ray, suffers from quadriplegic cerebral palsy, global development delay, microcephaly and is non-communicative. Having one night off a week and one weekend off a month from caring for Nikita means that Trudie and Malcolm can get some much-needed sleep, do some grocery shopping and keep on top of their housework.
This week the family has been praying for a last-minute reprieve after they were informed a private meeting would be hosted today (May 25) to discuss the outcome of the short breaks contract.
Parents were told by Northamptonshire Healthcare NHS Foundation Trust (NHFT) that it didn't see a way it could safely look after the children within the restructured financial model.
Northamptonshire County Council said it would continue to provide £1.325 million per year but co-funder Nene and Corby Clinical Commissioning Groups (CCGs) has reduced its share of funding in 2018/19.
Today a letter was issued to families at the County Hall meeting from Lesley Hagger director of Children First Northamptonshire.
It said: 'We have been liaising closely with NHFT on delivery and with the CCGs in terms of their financial contribution to the service, and as a result, we are pleased to announce that we will be continuing to work with NHFT and a new contract to deliver a residential short breaks service.
"And that the CCGs have agreed to continue to fund the service at the original level to ensure delivery continues for 2018/19 after the end of July when the contract officially ceases'."
Nikita's big sister and carer, Kelly Dunkley, attended the meeting with about 30 attendees. She said: "The meeting was opened with an apology, and at that point, we thought they were just going to say, it’s over. They didn’t.
"They have proposed the contract will run until the 31st March and that services will remain in place but we may find some slight changes to the services. Including the possibility of old, now closed services being reopened."
But her family and other parents at the private meeting, which was not open to the press, were concerned that they would be in the same boat in March when the contract comes up for renewal again.
Ms Dunkley said: "Although the initial feelings are of relief on the way home - whilst processing the information we were talking about how maybe this is something that will be needed to be done again in nine months and that it would be another stressful time for all involved.
"Nikita, although she won’t understand completely, will remain in her routine, of 13 years, and her social life will not be altered. It’s massive news. It’s great news. She will still enjoy her breaks and stimulating days out with her friends and the much-loved staff at The Squirrels.
"The board want to make changes that make our experience as families and service users better. However, the general consensus across the parents that attended the meeting was that we did not want to make changes as the service as it is, is perfect for all concerned."