Video report from ITV News Meridian's Sarah Saunders
Donna Wilson describes her daughter Ebony as a happy person, but she has cerebral palsy, autism and incontinence.
She can't walk, is non-verbal and fed by tube, so Ebony needs care around the clock.
All of which is now being provided by her mum and dad, since Chailey Heritage Pathways gave the family six weeks notice that they were withdrawing the family's care plan.
Donna said: "It is hard, and work it's really hard work and as a parent you do it because you love your child.
"And just because she is 27-years-old that doesn't change what she means to us, but we are not getting younger we can't do what we used to do 30 years ago.
"And to have a care package in place one minute and 6 weeks later have nothing at all..."
Donna Wilson on how she's been impacted by the removal of Ebony's care plan
Ebony was being looked after by a rota of four carers.
It was a continuation of care she started at Chailey Heritage School when she was one-year-old. Almost three decades later, she went onto their home 'Pathway' care scheme.
But the family say rosters were often changed. There were staff shortages, leaving their daughter unexpectedly let down, and communication could be poor.
This was before the provision was taken away altogether.
Donna said: "She loves being here with us, we love having her here with us, but as a family we can't do this for much longer.
"And it's not fair on her either because we can't give her what she needs."
The family have huge praise for individual staff members who they said were professional and kind, but feel the organisation let them down.
Chailey has admitted, like many care providers, it is currently having serious problems with recruitment.
Helen Hewitt, the Chief Executive of Chailey Heritage Foundation, says the situation reflects their wider problem with recruitment
"We very rarely have to hand back a contract, particularly as we've had such a long relationship with Ebony and her family, even since she was about one-years-old.
"I think it reflect the much wider issues we've had over recruitment, it's something that we felt in the end, that if we weren't going to be able to recruit it's better to say so."
Ebony and her mother are trying to find new carers, so far no one has applied, and they are continuing to cope on their own.
The Chailey Heritage Foundation will be hosting two careers fairs on the 21st and the 24th of March. More information can be found here.