A single mother has spoken about her struggles to secure vital funds from the local council so she can get the support she needed to raise her deafblind son.
Carla Golledge’s 12-year-old son Cameron has Norrie’s disease, a rare genetic disorder that primarily affects the eyes. Cameron also has autism and developmental difficulties, which means Carla needs additional support from trained professionals who visit their home.
“He’s just a really bubbly, energetic boy. Everyone always comments on how his smile lights up a room. He’s just great fun to be around,” she told Yahoo News.
“Because Cameron’s non-verbal, and he’s fed through a peg as well, he just needs extra support. That also means having a communication partner and just allowing him to access the world safely.
“I do the best I can, but I’m spitting myself in three.”
However, getting to this point has been a painful battle for her.
Carla, who lives in Bristol and also has two daughters, told Yahoo News about the challenges she faced getting help for her son, after she was rejected four times for a social care assessment.
These assessments are carried out by social services and are used to determine whether people receive critical help such as disability equipment and adaptations, home care help and day centre access to give parents a rest.
‘I’m splitting myself in three’
Children like Cameron wait an average of 200 days for a social care appointment, according to disability charity Sense. Nearly one in five parents of disabled children (17%) end up having to wait more than a year.
Without an assessment from social services, families are unable to get any support from their local authority. Nearly half of families (48%) say without this support they are struggling to cope.
In 18 local authorities, the length of assessments is more than the 45-day legal limit
Like many parents in a similar situation, Carla said she feels like she needs to “split myself in three” to deal with her family’s day-to-day needs — which is why it is so vital for her to have the right support.
Carla first heard she was eligible for help when she was pregnant with her youngest daughter in 2016, and was struggling with the pregnancy.
Cameron, who was in a wheelchair at the time, required round-the-clock care.
“I’d never really heard about getting support from social care,” she explained.
“It was when I fell pregnant with Cameron’s younger sister that I realised I could get help. I had a really difficult pregnancy and we were attending the Sense family centre, which we used to go to weekly support groups for Cameron.
“When I was there, I told one of the family support workers how much I was struggling and she said to me: ‘Do you know you can get support from social care?’ She helped me get a referral and get some support in place.
However, as her soon as her daughter was born, that help was taken away.
“I didn’t understand – Cameron’s needs were still the same,” Carla said.
Carla applied for help from South Gloucestershire council after her pregnancy, but her application was rejected because Cameron was “too young” to be supported by the social care system.
“They were trying to say is that his needs were not greater of another child his age. When they’re quite young, you still do a lot for every child. But obviously that’s not the case with Cameron and his disability, there’s so much more,” Carla explained.
In another instance, she was asked if close family and friends could help with his care instead.
It was only when she heard from other parents at the meet-up group that they had received support that she decided to reapply.
“It made me think, ‘it’s nothing to do with Cameron’s age because this child is the same age or younger than Cameron and they’ve received support’. It didn’t really make sense to me. I don’t really have anyone that would understand his complex needs and be able to keep him safe and be trained on to feed him and communicate with him,” Carla added.
“It took two years and four rejections before anyone from the council admitted that Cameron needed help.”
Since 2018, Cameron and his family have had a care package in place. However, Carla said she is often pushed to “crisis point” before the social care team intervenes.
“One of those times I ended up in hospital when I was really struggling with my mental health,” Carla said.
“I was suffering with panic attacks, and I was burnt out from caring for Cameron 24-7 and just stretching myself. I spoke to the nurses at the hospital and I explained my situation. They contacted the social care team, then they stepped in and made another assessment,” she said.
Things have improved in the year since Cameron’s latest social care package was put in place.
“Cameron has got a team of carers that come in for a certain amount of hours per week in the home they take him out into the community. Then I’ve got one carer that stays over,” Carla said.
“I am entitled to an overnight stay every month. The carer comes into the home and then stays with Cameron overnight so that I can go off with my friends or just have a break somewhere,” she added.
Urgent reform needed
James Watson-O’Neill, the chief executive of Sense, said Carla’s story proves that “access to high quality support can be life-changing.”
“It is the difference between a child feeling lonely and left behind, and a child having the support they need to grow, learn and thrive. But the social care system is failing disabled children and leaving families at breaking point. Parents shouldn’t have to fight for the care their children deserve.
“We need urgent reform to ensure all children get the support they need without facing unacceptable delays.”
Carla said she believes support should be in place for the parents of disabled children from the day they are born.
“Nobody from the council comes in and says, ‘oh, you’ve got a disabled child now, this is the support available out there and this is what we can do’”, she said.
“It’s just hearing first-hand experiences through other parents.”
A South Gloucestershire council spokesperson said: “Over the years the support provided to Cameron and his family has evolved to meet his changing needs.
“This has included periods where additional support has been put in place to help manage specific issues and a high-level support package is currently in place. Cameron’s updated deafblind assessment was completed in 2023, and his social worker is a permanent member of staff and has been in place since August 2024.
“As part of the assessment process, it is good practice for social workers to explore options to underpin a care package with family and other networks where this fits the care needs and where such networks exist.
“Where an individual, or their family in the case of a young person, has questions or concerns about the care provided, we encourage them to raise these with their social worker and there are mechanisms to escalate matters through a formal complaints process if they choose to do so.”
