My daughter left school and has nowhere to go
Amber Kane has just turned 18 but her mum fears a lack of support for her complex needs means her development is regressing.
Until this summer, Amber was able to attend a special needs school in Fife but her mum Amanda says the transition to adult services has been difficult to navigate.
“She is coming from being a bouncy teenager to lying on the couch day in, day out, because there is no stimulation for her," her mum says.
When she was in a school setting she was able to access swimming classes, outdoor play and activities like bowling but now Amber is mostly confined to her home.
"The crux of this is that the services that were available to Amber when she was a child have pretty much been stripped back because she's an adult," Amanda says.
Amber has a severe learning disability, autism and a visual impairment which has required round the clock care since she was a young child.
When she reached the age of 18 she had to transition from children to adult services with the help of social work and social care teams.
Amber’s needs were assessed by a social worker earlier this year and she was provided with support at home during the day from two carers.
Her mum would like her to attend an adult day service because she believes Amber is “unstimulated” by being at home all day.
A review of Amber’s care plan, which was meant to take place six weeks after her in-home care began this summer, has yet to take place.
Amanda has herself attempted to look for adult day services but has not found anything that meets her needs.
She told BBC Scotland News: "Amber can be quite aggressive at times.
"Everywhere that I've looked so far, they've said that we don't have staff that would deal with what they call challenging behaviour.
"I hate that word, though, because it's just her expressing herself.
“They don't deal with challenging behaviour, or they don't deal with incontinence. Amber is doubly incontinent. They've not got enough staff, so that's what you're faced with."
As a result of caring for Amber’s complex needs, Amanda has quit her long-term job.
She says she is Amber's legal guardian and she has to fight for the services she needs.
"I am Amber's voice but no-one's listening to me," she says.
The transition from children to adult services has been highlighted in a recent review by the Care Inspectorate.
Among its findings, it stated the experience of transitioning into life as a young adult "continues to be characterised by unpredictability and uncertainty for too many disabled young people".
It also raised "an increasing complexity of need and high demand for services was outweighing the availability of supports".
Access care
Amanda is determined to find a solution for Amber’s care.
She is exploring all options including hiring a local community space through the week where Amber can go to access care.
"It absolutely kills me to think that she may end up in the wrong place because we are unable to manage her needs any longer, it absolutely terrifies me," Amanda says.
"We're not old, but we're not going to be here forever. I need to make sure my daughter's set up for life.
"She's just everything to me. She's just amazing.
"I had Amber at a young age. I was only 18, so I was Amber's age when I had her, and she's shown me life.
"I will do anything in my power to make sure that she's got a thriving, happy life. It's my job as a parent."
A spokesperson from the Fife Health and Social Care Partnership, said: "Whilst we don't comment on individual cases for reasons of confidentiality, we would ask that anyone who is experiencing an issue with the services we provide to contact us."
