THE worrying neglect of disabled children’s needs by health services and local authorities during the pandemic is today laid bare by a shocking new survey.
Families felt “abandoned” as routine therapies and essential care were withdrawn.
Children’s conditions worsened as a result — leaving more than four in five parents of disabled kids plagued by anxiety.
Urgent referrals to children’s emergency mental and physical health services — for emergencies such as attempted suicide or struggling to breathe — have soared and remain high.
The revelations appear in a report from the Disabled Children’s Partnership, a coalition of 90 disability and children’s charities.
As part of our award-winning Give It Back campaign, Trending In The News and the DCP have called on the Government to plug a £434million funding gap in support and services for disabled children. Amanda Batten, chair of DCP, said: “During times of emergency or disaster, people with disabilities are disproportionately affected.
“Disabled children and young people were mainly absent from the narrative around the pandemic.
“DCP is urging the Government to ensure that disabled children, young people and families can recover from a year and a half of lost progress.”
The survey shows 71 per cent of affected parents saw their child’s progress reverse or regress during the pandemic.
During lockdowns, vital paediatric pain management clinics were reduced by 84 per cent and access remains extremely low, leaving many disabled children in pain.
Linda Taylor Cantrill, from Exmouth, Devon, is mum to seven-year-old twins Reddington, who has complex needs, and Teddy, who has autism.
She said: “We were abandoned in the pandemic and our children are still paying the cost.”
The Then There Was Silence report, to be launched at a Parliamentary event today, surveyed 840 parents and made Freedom of Information requests to NHS trusts and local authorities.
It chronicles how children faced long waits for their physical and mental health to be assessed and missed out on essential care.
Here, some of those families’ heartbreaking stories reveal the human face behind the figures.
COMPLETELY ISOLATED
‘Issac has missed his school. Navigating systems that don’t join up is an endless job’
DAD Rick Bolton says his son Isaac, who has cerebral palsy with complex needs, is usually “a really sociable little guy” who has become “completely isolated”.
Rick, 46, from Chorley, Lancs, says: “He’s had to have more time off from school than his friends. Equipment like a hoist and a wheelchair have been over a year coming. Having a child with complex needs is an endless job of navigating systems that don’t join up.”
LEFT IN THE DARK
‘We got lawyers to secure a college place for Elvi because local authority refused’
WHEELCHAIR-bound Elvi Wilson, 19, from Raynes Park, South West London, has RCDP – a disorder that shortens limbs – as well as learning disabilities and brittle bones.
Journalist mum Sam, 53, says: “At the start of the pandemic, school pulled up the shutters and we heard nothing from our social worker for a year. We had to engage lawyers to secure Elvi a college place because Merton local authority refused to name a provision for her.”
NO EQUIPMENT FOR NINE MONTHS
‘Support for Leila was withdrawn overnight when pandemic began. We heard nothing’
Leila Walker, nine, from Wimbledon, South West London, has a rare genetic disorder.
Mum Naseem, 43, says: “Support was withdrawn overnight at the start of the pandemic. We heard nothing.
“Leila’s new standing frame which enables her to weight bare and maintain function in her legs was delayed for nine months. It led to spinal problems which cost taxpayers more.”
STRUGGLED SO BADLY WE THOUGHT ABOUT DIVORCE
SEVEN-year-old Reddington Taylor Cantrill, from Exmouth, Devon, has visual and hearing impairments, autism, and a processing disorder. His twin, Teddy, is autistic.
Mum Linda, 51, says: “My husband Scott and I considered getting divorced so that one of us could get respite. But we love each other too much.
“We received no support in the pandemic – we still don’t.
“My husband had to take a less well-paid job to help with the boys.”
5-YEAR WAIT AND LEGAL BATTLE . . . FOR A SHOWER
ISABEL Stanley, 18, from Altrincham, Greater Manchester, has a rare genetic disorder, a learning disability and is a wheelchair user.
Mum Elizabeth Stanley, a volunteer caring for those with educational needs or disabilities, says: “I went to a tribunal to win back physio and therapies. They said she should have it but I had to chase the providers.
“Now we have got solicitors involved to make sure Isabel gets the downstairs shower she was advised to have at the age of 13.”
NO FACE-TO-FACE THERAPY
THREE-year-old Aanjaney Tripathi, from North London, has global development delay, neuro-behavioural disorder, an avoidant food disorder and other conditions.
Mum Pranali Tripathi, 37, a former specialist oncology physiotherapist and now full-time carer, said: “He has been on the waiting list for more than a year for speech and occupational therapy. He also needs face-to- face therapy for his feeding disorder and is losing weight.
“I now suffer from PTSD and take medication for panic attacks.”
MENTAL HEALTH SUFFERED
Robyn, Lily and Ted Chivers aged 17, 15, and 11 from Princes Risborough, Bucks are all autistic, Lily also has ADHD and anxiety, Ted has sensory processing disorder.
Mum Mandy, 49, says: “The system for our children anyway is “fail first, fix later” which costs more money long term. The pandemic showed how isolated families like ours are all the time.
Lily ended up in hospital because of lack of support before she got the treatment she needed. Ted’s mental health really suffered and all three thought my husband Richard (48, a printer) and I were going to die. That was the logic for their brains. We were just left to cope.”
LONG WAIT FOR BATH LIFT
FOR two years, 11-year-old cerebral palsy sufferer Annabelle Harrison-Bayliss has not been able to see a GP or paediatrician.
Mum Tarma Rowles, 44, a student from Tewkesbury, Gloucs, who also runs a horse rehoming charity, said: “Our occupational therapists ordered a bath lift about six months ago and we’re still waiting.
“Annabelle has missed physio. Luckily we have been able to keep her active by funding her therapies ourselves but other children may not be so lucky.”
POWERLESS AND ANGRY
MUM Dolores Cowburn feels “powerless and angry” in the face of her four-year-old daughter Tilly’s battle with Rett syndrome, a degenerative genetic condition.
The 43-year-old communications officer from Guiseley, West Yorks, says: “It feels like the children’s disability system is robbing our amazing, resilient little girl of the chance to live the best life she can live.
“Her dad was so exhausted from caring this week he dropped her.
“Tilly broke her leg and suddenly, after a year of no support, they were interested.”
SURGERY WAS CANCELLED
CLAIRE BOSANQUET is mum to Tom, 18, and Jack, 21, who is doing a masters in biology.
Both were at home over lockdown needing care as they have Duchenne Muscular Dystrophy, and Tom also has learning disabilities.
Claire, 55, from Keyworth, Notts, says: “My husband and I had to ventilate our sons and clear their lungs with no support.
“Children’s services backed away as Tom turned 18 in lockdown.
“He was scheduled to have major spinal surgery this month but it has been cancelled.”
MY DEAF SON DID NOT SEE HIS TEACHER FOR A YEAR
TEACHERS of the Deaf are qualified to help children who cannot hear become independent learners by giving them extra support.
But deaf 12-year-old Eshaan Kahlon, from Birmingham, did not see his for over 12 months.
Dad Harjeet, a lorry driver, said: “Eshaan missed out on face-to-face support from his Teacher of the Deaf for over a year. He saw her three weeks before he broke up. Eshaan has now started secondary school but could have done with extra support.”
LACK OF PHYSIO LED TO SURGERY
CARE chiefs withdrew physiotherapy for eight-year-old cerebral palsy sufferer Elisa McEvoy, from Bournemouth.
Dad Dan, 45, who works in IT, says: “Her condition deteriorated, her hips changed shape and her joints were at risk of dislocation. She needed surgery to take chunks out of her hips to fit them back in.
“That was painful for Elisa and stressful for us. Because she wasn’t in school we had to pay for private physio for her to recover.”
SELF-HARMING OUT OF FRUSTRATION
DUE to rare genetic disorder Mandibulofacial Dysostosis with Microcephaly, 20-year-old Rebecca Slator, from Leeds, has complex medical needs, profound learning difficulties and a permanent tracheotomy.
Mum Nicola, 50, says: “Rebecca loves Argos catalogues, animals, the outdoors and people. Her lack of social interaction and language therapy during lockdown affected her so badly that she was self harming as she could not express herself.”
LONG WAIT FOR WHEELCHAIR
MUM Alaska Perry feared her 16-month-old son Gabriel would have one of his daily seizures in his buggy.
Teaching assistant Alaska, 24, from Bourne, Lincs, said: “I couldn’t risk using it and as I don’t feel safe holding him, we weren’t able to go out, which impacted our five-year-old daughter Amelie too.
“The wait for an assessment to get a specialist buggy was 18 weeks minimum. Thankfully, the charity Newlife has loaned us one while we wait.”
