A family feel ‘abandoned’ by their local health authorities who they claim refuse to help their severely autistic daughter who has ‘meltdowns’ up to five times a day.
Nine-year-old Bella Mildon, who is non-verbal and has the mental age of a toddler, has been left bruised, bleeding and even hospitalised after self-harming during her episodes.
Every day Bella’s exhausted parents, Samantha, 49, and David, who both suffer from depression, are left to manage their daughter on their own, which is pushing them to ‘the end of the line’.
The couple, from Nailsea, Bristol, claim North Somerset Council told them Bella should sleep on the floor after breaking her bed and refuse to collect the eight nappies she gets through a day.
Samantha, who cares for Bella full time along with David, said: ‘When staff leave, they don’t seem to be replaced and with funding cuts, it seems the number of professionals who deal with cases like ours are depleting.’
In a desperate attempt to raise awareness of Bella’s suffering, her parents posted a video of a typical day caring for their daughter on social media.
A clinical psychologist at the John Radcliffe Hospital in Oxford has since agreed to see Bella.
According to a council spokesperson, they do not comment on individual cases but will continue to support the Mildon family.
The family of severely autistic Bella Mildon, nine, (pictured with her mother Samantha, 49) feel ‘abandoned’ by their local health authorities, who they claim refuse to help with her condition
Bella (pictured in bed after a episode) suffers up to five ‘tantrum meltdowns’ every day
Samantha and Bella’s father Dave (pictured), who both suffer from depression, are left to manage their daughter on their own, which is pushing them to ‘the end of the line’
WHAT IS NON-VERBAL AUTISM?
Non-verbal autism is not an official diagnosis but usually refers to the approximate one-third of sufferers who never learn to speak more than a few words.
Some patients manage to speak a few words but cannot carry on a conversation.
Others may ‘echo’ scripts from television shows but not use them in a relevant way.
Certain patients cannot speak effectively but can communicate via writing, picture cards or sign language.
Around one in 68 children in the US are on the autism spectrum. The condition affects approximately 695,000 people in the UK.
The number of non-verbal sufferers is unclear.
Why some autism patients do not learn to speak is unknown.
Certain non-verbal autistic children gain the ability to speak and may even become fluent.
Research suggests speech therapy and behavioural interventions can improve verbal communication.
Music therapy may also be beneficial.
Failure to speak is not necessarily an indicator of a low IQ or poor autism prognosis.
Source: Very Well Health
‘Bella has fallen through the cracks’
Samantha, a former artist, said: ‘Bella is supposed to have a community paediatrician, an occupational therapist, an educational psychologist, and speech and language support. But she has none of this.
‘Bella is a child with extremely complex needs and we feel totally abandoned by the council.
‘We feel we have been left to cope alone and between us are trying to fill all these roles. It’s exhausting and as a family we are at the end of the line.’
Bella’s parents have even been advised to move out of their home in North Somerset to access better funding and services for their daughter.
The youngster experiences fits and seizures, which have dramatically worsened in the past 18 months.
Although she has been placed on specialist anti-psychotic medication twice a day to help ease her episodes, the special needs school she previously attended still deemed her too complex for them.
Bella has only spent a total of six hours at her current school since September.
Consequently, she is not being seen by the relevant experts working within the education system.
Samantha said: ‘Bella is a child who has fallen through the cracks. Even our local MP, Liam Fox, said exactly that when we wrote to him for help. He said it was disgraceful.’
Samantha was told by the local council Bella, who has the mental age of a two-year-old, should sleep on the floor after she broke a bed and requested a special replacement
They told the family last week they will no longer be collecting Bella’s nappies as clinical waste
Bella goes through up to eight nappies a day. Samantha say she does not know what they will do as the household rubbish is only collected on a fortnightly basis
Samantha says Bella has ‘fallen through the cracks’ as specialist health staff are unavailable
Bella’s mother blames a lack of funding for the insufficient support the family are receiving
Bella’s school found her too complex. She has had six hours of education since September
Dave has put off a hernia operation for two years as Samantha cannot care for Bella on her own
‘I don’t know what we’re going to do’
Samantha, who has two other children aged 25 and 21, said: ‘Neither of us can work because it needs both of us to care for Bella.
‘One of us has to be up with her all night because she doesn’t sleep.
‘Dave has been waiting for a hernia operation for two years, because he cannot leave me to care for Bella on my own.
‘He used to run his own carpentry business, so was self-employed, but he hasn’t been able to go near it for about six months now because of looking after Bella.’
Speaking of being told Bella should sleep on the floor, Samantha said: ‘Bella needs a special bed and, if allowed to sleep just on a mattress, would be banging her head on the walls continually.’
She added the most recent blow came just this week, when the family was told Bella’s nappies would no longer be collected.
She said: ‘I have no idea why. They used to come and collect huge bags full of them.
‘I don’t know what we’re going to do given the bin only gets collected every two weeks.’
In a desperate cry for help, Bella’s family released a video of a typical day of her episodes
Bella’s parents can be seen restraining her as she attempts to hit her head against walls
She can also be seen self-harming by punching and biting herself, which has needed treatment
Bella’s parents say they love her and will never abandon her, but add they need more support
‘Bella has lost everything apart from her parents’
After seeing the footage of Bella’s episodes, one of Samantha’s friends took it upon himself to find a specialist who could help.
Hospital consultants have already said Bella’s support in the community needs to be increased.
Samantha said: ‘It was a huge decision for us to put the footage on social media, but we are desperate for help. We just want to make people aware of our plight.
‘We feel Bella has lost everything apart from her parents. But, as parents, we are exhausted.
‘If we said we could no longer cope with Bella then the relevant services would have to step up. But we love our daughter and we are never going to say that.
‘She is one of our family and we want to care for her. But we cannot do it alone 24/7, 365 days a year. We want Bella to get the support she needs and is entitled to.’
Off the back of the footage, a clinical psychologist has agreed to see and assess Bella
Hospital consultants have already said Bella’s support in the community needs to be increased
Bella’s parents say sharing the footage was a big, but necessary, decision
Council spokeswoman Zoe Briffitt said: ‘Our relationship with the Mildon family is confidential and we do not comment on individual family matters.
‘Children with complex health and learning needs are supported by a range of professionals at the council. This includes special educational needs, occupational therapy and social care teams.
‘Each child has an education health and care plan, which is developed to co-ordinate the specialist support required.
‘This plan is reviewed annually and is formulated with the input of the parents and child.
‘We will continue to provide support to the Mildon family to help meet the needs of their daughter.’