Bristol family's fear for autistic son as funding for carers cut from £20 an hour to £12.45
ITV News' Max Walsh spoke to Zak's family about their concerns.
The family of a young autistic man in Bristol say they fear for his safety and wellbeing after funding for support workers and therapies was reduced.
Nura Aabe’s son Zak turned 25 at the end of last year, with responsibility for his care transferring from Bristol City Council to the NHS.
She said a new funding decision could have a major impact on Zak’s health.
"My son has been failed by systems and I continue just to just worry about the future - it is so uncertain and I just fear the worst is going to happen because last year, when my son's support has been stopped, he wasn't eating.
"He wouldn't come out of his bedroom and I was just scared he was going to die."
Zak is described as being lively with a love of nature and the outdoors.
He has intense sensory needs and type one diabetes but, with the right support and routine, his family believe he can thrive.
Last year the family applied for new financial support from continuing healthcare funds at the NHS.
The new funding deal only pays Zak's support workers £12.45 per hour, compared to £20 per hour under Bristol City Council.
The family fear they will lose the support workers who have been working with Zak for several years.
Nura said: "Someone with autism is always seeking some kind of clarity. And the difficulty is we can't give him that information because we don't know."
Sam Miles has been Zak's support worker for eight years and he says the situation is heartbreaking.
He said: "I can't bear the thought of just turning around and being like, 'I'm sorry, mate. I've been dreading this'.
"How can I talk about this without getting upset? You get most invested with these people when you work with them.
"It's not like you just going into a shop and you're selling bits and bobs. This is another human being."
A spokesperson for NHS Bristol, North Somerset and South Gloucestershire ICB, said: “We understand the challenges and uncertainty people face when they experience a change in funding eligibility and do invite individuals and families to be involved in as much of the assessment process as possible.
"However, in making these decisions we have to follow a nationally set framework alongside a locally agreed policy for the application of continuing healthcare funding.
“Often, when there is a change in funding arrangements, we will implement a three-month transition period where we can further review therapy needs and explore other commissioned service offers or funding options to ensure people continue to get the support they need.”
Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know...