A Northamptonshire family are hoping for a last minute reprieve today as bodies are set to get together at County Hall to discuss the future of respite care.
The residential short breaks contract, which ends in July, to run The Squirrels centre was put up for tender in March and 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 will continue to provide £1.325 million per year but co-funders Nene and Corby Clinical Commissioning Groups (CCGs) have reduced its share of funding in 2018/19.
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.
Malcolm said: "You haven't got to worry about whether she needs to be fed or changed and all the rest of it. She has a very short attention span - you can give her a book to read and then she will throw it on the floor. You do that eight hours a day.
"She's constant work from the minute she gets up until the minute she goes to bed. We need to recharge the batteries, without that the stress would just keep building and building."
Today parents will be told the outcome of the short breaks contract. The meeting will be held in private and is not open to the press.
Trudie said: "She knows all the staff because they have been so consistent throughout the years, and the children. All of Nikita's social life is within Squirrels - they take her out to the cinema and bowling. They do all sorts of things there."
The family are concerned that if the Rushden respite centre shuts then their only alternative is to put Nikita in full-time residential care.
"We are talking about lives. A real difference to peoples lives. It's not Nikita's fault that she will suffer. We can't imagine what it would be like, it's not that it enables us to have a social life, that's lovely, but it's not what it's about. It's about a release from the pressure," Trudie added.
A Northamptonshire County Council spokeswoman said: “We are currently in discussions with Nene and Corby Clinical Commissioning Groups (CCGs) about the future model for the residential short breaks service, as the current contract is due to come to an end in July.
“We will be holding a meeting for families who use the service today (May 25) to inform them of the outcome of our discussions with the CCGs and explain any impact on the future provision of the service.”
A spokeswoman for NHFT said the service has not bid for the contract because the body does not believe it can provide the same level of service with a 32 per cent reduction in cash.
She said: “Following the announcement of the tender for residential Short Breaks for Children with Special Educational Needs and Disabilities (SEND) with a proposed new model, which included a 32 per cent reduction in funding, Northamptonshire Healthcare NHS Foundation Trust (NHFT) have explored all our options to continue to deliver this service safely.
“NHFT’s priority is to ensure a quality service is provided to service users, their family’s and carers. Our focus on quality care has regretfully brought us to the decision of not bidding to continue to provide the residential short breaks service as we don’t believe we can provide the level of service we would want to within the finances now available.
“We have not taken this decision lightly as the residential short breaks service is one we value highly. Our priority at all times will be to ensure our staff, service users and their carers are kept informed of developments. We continue to work with partner colleagues to hear the views of parents and carers.”