(Image: Amanda Kane)
The mother of a disabled young woman has warned of a “cliff edge” facing families when children move into adult social care after her daughter’s support effectively stopped overnight.
Amanda Kane told The Herald she and her husband Pete were forced to give up their jobs during a “horrific” transition which came despite a year of planning for their daughter Amber, now 20, to leave children’s services.
Amber, who is non-verbal and has severe learning disabilities and autism, had been supported through school, respite care and outreach services but when she turned 18 and left school, that support stopped.
“One day she went to school and that week had Aberlour and then she went to bed, woke up and everything stopped,” Amanda, from Dunfermline, said.
The family received overnight respite every third weekend through Aberlour Children’s Charity, while outreach workers collected her from school and supported her into the evening.
Her mother told The Herald their daughter is still trying to recover from the regression of losing access to vital services.
But Amanda said the approaching transition to adult services had been known to council chiefs well in advance.
At the age of 16, Amber’s headteacher at Calaiswood School in Dunfermline raised concerns with the local authority about the need for an adequate transition before she left school.
“Amber was probably the most complex pupil at the school,” Amanda said, adding: “Social work were aware of what was coming their way.”
Around a year before Amber was due to leave, the family began attending transition meetings, but progress stalled.
“Eventually, my husband and I had to give up our jobs. It was the most traumatic experience of our lives.
“We were going to meetings every week, knowing how complex and vulnerable Amber is, and it wasn’t just school that was ending, it was respite and outreach with Aberlour.
“They have been with us for so many years and suddenly they’re no longer in your life anymore.
“It was horrific. Absolutely horrific. It absolutely ruined us. We are still recovering from it.”
With just four weeks remaining before Amber was due to leave school, Amanda said she was still asking for a plan to be put in place.
“My anxiety was absolutely through the roof,” she said.
“I know that I can’t look after Amber seven days a week on my own. It’s not safe and I can’t give her everything that a care team can.
“As a mum, I just felt absolutely helpless. I didn’t know where to turn. We got in touch with local MSPs, MPs, lawyers, everything to try and help us.”
For Amanda, the most frustrating part was that Amber’s needs had not come as a surprise.
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“When someone is highlighted to social work at the age of 16 as being very, very complex, they should be taken seriously,” she said.
“That is a failure if no one is picking that up.”
The family was eventually allocated a transition social worker and received a package of 40 hours of care each week.
But because Amber requires two carers at a time, Amanda said the package amounted to 20 hours of supported time each week, a fraction of the structure she had previously received through school, respite and outreach.
And with just two weeks of school remaining, Amber met the care team who would be expected to support her after she left.
“It was very rushed,” Amanda said.
“She had just two weeks for this care team to get to know her, it was very overwhelming. How could I leave her without knowing she would be safe?
Amber Kane. (Image: Amanda Kane)
“She’s incontinent, non-verbal and has severe learning disabilities and autism. She has hearing loss and nystagmus. How were they supposed to get to know my daughter in this rushed process?”
Calaiswood allowed the family to use part of the school building during the summer holidays so Amber could spend time with her new carers in familiar surroundings.
But Amanda said the arrangement quickly ran into difficulty, with staff calling her when Amber became distressed because they did not know what to do.
At other times, she was told Amber was content to remain in the room playing with Lego and bricks.
“If you gave Amber the choice, she probably would do that,” Amanda said.
“But Amber is so, so much more. She is very sociable and she loves watching people.
“She started to go backwards with all of the skills she had learned.”
When the school reopened after the summer, Amber’s care moved into the family home, with carers there for much of the day.
But Amanda said the new arrangement brought further problems, with her daughter spending long periods at home rather than taking part in the activities she had previously enjoyed.
“They weren’t very forthcoming in trying to get her motivated to go out,” she said.
“They were just sitting around my house with Amber with the TV on all day, and I just thought, this cannot go on any longer.”
Eventually, she found another local care provider which she says transformed Amber’s support.
“Amber was put at the forefront of everything,” she said. “It wasn’t about money, it was only about Amber’s needs and we’ve still got that team two years later.”
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But finding somewhere for Amber to spend her days proved much harder.
Amanda said she approached day centres in the area but was repeatedly told her daughter’s needs were too complex.
“Amber went from having all these opportunities to nothing,” she said.
“Our family was deteriorating massively with the intrusion of people in and out our house,” she said. “It wasn’t working.”
She now hires a room at a local leisure centre every day, which she has turned into a base for her daughter and her care team.
“It’s so sad because she has went from a classroom with her peers to being on her own in her base.”
Amanda said the upheaval caused by the social care transition had a profound impact on her daughter, stating: “Right at the beginning we said, ‘Look, we have to get this right. We’ve got a year, this cannot be rushed and we cannot do anything that’s going to set Amber back because her behaviour just goes completely backwards’.”
“The problem wasn’t Amber,” she added.
“She’s so vulnerable but there was just no empathy from adult social work. Amber is just another name to them. Child services were nurturing, they care.”
Amber’s experience comes amid continuing concerns over the transition into adulthood for disabled young people across Scotland.
The Scottish Government and Cosla published Scotland’s first National Transitions to Adulthood Strategy for young disabled people last year, acknowledging that families had “consistently highlighted the complexities and challenges” they can face during the process.
The strategy says transition planning should start early, be led by the young person and involve coordinated support across services, with ministers stating that no disabled young person should be left without the support they need.
But new national data published this month suggests significant problems remain.
Research gathered by ARC Scotland found just 19% of parents and carers surveyed agreed that people were listening to what mattered to their young person, while only 36% felt their expertise about their child was valued.
Amber has now been discharged from her social worker, according to Amanda, but her mother’s biggest fear is no longer simply about the support her daughter receives today.
It is what happens when she and Pete are no longer there to fight for her.
“I can’t sleep most nights, I have proper anxiety about the future,” she said.
“I just want to enjoy my daughter and enjoy life.
“Everybody has that worry when you’re in this situation and you have a vulnerable child that goes, ‘What happens when we’re not here for her?’
“It’s the biggest voice in our heads. You can’t concentrate on anything else. It takes over my life.”
Amanda said one source of reassurance is Amber’s younger brother, who “absolutely adores her” and is fiercely protective of his sister.
But for Amanda, the experience of Amber becoming an adult has left a lasting anxiety about who will ensure she has the life she deserves when her parents no longer can.
Chief Social Work Officer, James Ross said: "We recognise that the transition from children's to adult services can be a significant and often anxious period for young people and their families, particularly where there are complex care and support needs.
"While it would not be appropriate to comment publicly on the care arrangements of individual people, we understand the importance of ensuring that transitions are planned and managed as smoothly as possible, with young people and their families fully involved throughout the process.
"In recent years, services across Fife have undertaken a review of transition processes and procedures, informed by feedback from children and young people, parents, carers and partner agencies. This is intended to support earlier planning, strengthen coordination between children's and adult services, and improve the experience of young people and families as they transition between these services."