Exhausted parents of disabled children feel ‘abandoned’ as Covid shuts services

Eddie Mylroi’s mother Linsey Worgan says the lack of provision for children with Special Educational Needs and Disabilities during the Covid-19 pandemic is a ‘national disgrace’ (Picture: John Marshall)

The plight of children with special educational needs (SEND) and disabilities during coronavirus restrictions has left exhausted parents feeling ‘abandoned’ without access to lifeline services.   

Closures and reductions of education, health and domestic provision during the pandemic have increased the burden on families who say they were already struggling to cope beforehand.

An Ofsted report into the impact of the first lockdown published this week found that some children lost basic skills and learning as a result of school closures and restrictions on movement.

Turning to SEND children, it found the pandemic has presented ‘serious and far-reaching’ challenges for families, with some feeling ‘isolated’ from existing services.

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Overall, the report found ‘mixed experiences’ from families, with some praising the support they had received and ‘most leaders and practitioners’ striving to help those in their care.

However, one parent who spoke to branded the situation a ‘national disgrace’ and said her three-year-old son had received no physio or occupational therapy for nine months.

Another told of a ‘pressure cooker’ environment and the ‘terror’ parents face with no end in sight, as they struggle without services they had previously relied upon in their day-to-day lives.

Children with Special Educational Needs and Disabilities have been particularly impacted by school closures during the era of Covid-19 restrictions (Credits: PA/file image)

Children with SEND already faced barriers to learning, including difficulties in reading, writing and socialising and related conditions, such as attention deficit hyperactivity disorder.

Returning to Covid-19 secure classrooms is even more difficult for pupils who have heightened infection control requirements, which can result from medical procedures such as tracheostomies.

Some have not returned to school since the first lockdown in March and also have had no care support in the home, parents told

A survey for the Disabled Children’s Partnership, a coalition of more than 70 charities, found 72% of parent carers were under increased strain to care for children and their siblings as the country moved out of the first lockdown. Nearly half said their children’s physical health had declined.

The #LeftinLockdown report found: ‘Parents feel exhausted, stressed, anxious and abandoned by society. In many cases, the support families previously received has now stopped.

‘Many families are seeing declines in both mental and physical health.’

Two parents tell their stories here

We’ve reached a tipping point, this can’t go on

Eddie Mylroi has suffered from a loss of support during the Covid-19 pandemic his mother Linsey Worgan has said (Picture: John Marshall)

Linsey Worgan told of the impact the closure of services has had on her three-year-old son, Eddie Mylroi, who is blind, brain damaged, autistic, and has cerebral palsy and a sensory processing disorder.

Eddie had been attending an education service provided by the First Step charity until it closed in March after running out of funding. Linsey, 42, from Havering, east London, also looks after her five-year-old daughter, Emma.

The full-time carer and mum-of-two said: ‘Special educational needs children have been as good as abandoned by their local authorities.

‘My son has had no physio or occupational therapy for nine months now, resulting in increased sensory-seeking behaviour, anxiety and frustration.

‘This manifests itself in the form of increased self-harm, lashing out at family members and a constant need to rock back and forth.

‘His special needs nursery closed after it was not able to raise funds during the first lockdown to stay open.

‘During the five months my son attended this nursery he went from 15 to 30 words. Since it closed he has stagnated in terms of language, regressed in terms of social skills and interaction and tolerance of adults and other children.

‘I have been forced to seek out private physios to help my child during this period, but this becomes prohibitively expensive very quickly.

Eddie Mylroi had been attending an education service provided by the First Step charity until it closed in March (Picture: John Marshall)

‘Why is it that I am able to take my son to a private physio therapy centre since the end of the first lockdown, yet my son still can’t be seen by the local authority’s physio and occupational therapy team?

‘Due to the absence of any physical therapy things such as walking frames have dropped off the radar so I have had to purchase a walking frame for my son from eBay.

‘Additionally, like many parents, I find myself in a position where I now need to fundraise in order to help my son, who faces the prospect of no educational and therapeutic input for twelve months unless I act.

‘I have written to local councillors, my MP and spoken to my local authority team and no-one has a roadmap of when services will reopen.

‘My local authority has not gotten back to me about respite despite numerous follow ups. I am a single mother and the lone carer to my son and his older sister and do not leave the house unless it’s to take my daughter to school.

‘I know from other mums of SEN children across the UK that my situation is not uncommon. This is a national disgrace.

‘A tipping point has been reached and Covid-19 has now ceased to be a reasonable explanation, it’s an all too convenient excuse for treating our most vulnerable children in the worst possible way.’

Eddie Mylroi has been forced to use a walker his mum bought on eBay after the family suffered a loss of support services during the Covid-19 lockdowns (Picture: John Marshall)

In response Havering Council’s Cabinet Member for Education, Children and Families Cllr Robert Benham said: ‘We have been working with Ms Worgan and her son since they were referred to us in October 2019.

‘Our work has been to assess the child’s needs and we have arranged for them to receive specialist advice, equipment and direct payments so they can have short breaks. 

‘We’ve been supporting the young boy at home with his education and providing his mum with specialist guidance and advice via a teacher for the visually impaired. 

‘Unfortunately, the pandemic has meant a number of reduced services,  including the therapy services provided by our health partners, but we are working with them to make the best arrangements that we can to support the family’”

Visit Eddie’s fundraising page here

It’s like a pressure cooker, there’s no end in sight

Sam Carlisle with her daughter Elvi Wilson and son Sonny Carlisle as they support the Jeans for Genes children’s medical research campaign (Picture: Jeannine Morris/ METROGRAB)

Sam Carlisle, 52, from Wimbledon, south-west London, is mum to 19-year-old Elvi Wilson, who uses a wheelchair and has a mental age of three.

Elvi has a rare form of a genetic condition called rhizomelic chondrodysplasia punctata. Sam, a freelance communications consultant who works for the Disabled Children’s Partnership, also has a 13-year-old son, Sonny Carlisle.

Sam said: ‘My daughter counts as a child in this field as she has a rare genetic disorder, there are only four children with this in the country.

‘We had nothing from anyone in the first six weeks of the first lockdown and where we would normally have support to help wash and dress her in the home, we had nothing.

‘Because she has a mental age of three she didn’t understand lockdown and was getting frustrated and angry that she couldn’t go to school.

‘She sleeps three hours a night and when you are a parent and up at night it’s exhausting. Parents were in a pressure cooker already but it was like it was turned up to extreme high.

Then we had to decide whether to bring people back into the home and we were allowed to and potentially risk people’s health. This was a big decision for everyone.

‘The school didn’t reopen because it couldn’t get the right PPE and was closed until September.

‘They did offer restricted access at the end of the first lockdown, a few weeks before the end of the summer term, but we made the decision that it would confuse her even more to go back only to be pulled out again.

‘She gets respite nights at the school as a boarder which helps with the family’s sleep and she has access to that again but for the last couple of weeks she’s had to self-isolate because someone in her bubble tested positive for Covid, so she’s had back home again with no support or care.

There’s a terror amongst parents of disabled parents that this will just go on and on. I’ve got friends whose children have been off school since March.

‘There are kids who have respiratory or other issues making them extremely vulnerable who can’t go back in and have been at home ever since.

‘I can’t imagine how difficult that is, it makes me feel lucky.’

A Department for Education spokesperson said: ‘Throughout the pandemic we’ve prioritised pupils with SEND including those with Education, Health and Care Plans for whom we kept schools open where it was safe to do so. 

‘We’ve provided more than £37million this year to help thousands of low-income families raising disabled or seriously ill children with the challenge they face staying at home.

‘Our £1billion Covid catch-up fund includes additional weighting for specialist settings in recognition of the higher costs they face. 

‘At the same time, we are increasing high needs funding for local authorities by £780million this year and a further £730million next year, which means high needs budgets will have grown by 24% in just two years.’

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