Disabled children: inhumane treatment under the blanket of Coronavirus

As parents across England and Wales prepare their children for a return to school that will look so different to such a large proportion of attendees, so many of us are apprehensive about what the future holds. The recent change to policy on face masks in schools in Scotland prompted England and Wales to revise ours; not for the first time are we behind Sturgeon in our fight against Covid-19.  Lockdown has – it is clear – affected young people in so many ways that it hasn’t adults. Although some studies have shown a reduction in stress levels for teens (less so when it comes to the exam results debacle, no doubt); reports that younger children are experiencing high stress levels are certainly unwelcome news. 

“The Coronavirus made Daddy lose his work and money”

Our business plan consultation asked 2,000 children what they worry about – and feeling stressed and/or sad was the most common answer, with a third of 6 to 17-year-olds choosing this as one of their top three worries. 88% of all children said that they had ever felt stressed […] not surprisingly many children told us that the virus was their biggest reason for feeling stressed

Children’s Commissioner Report, 2020

My own children; 4.5 and 2.5, have been mostly shielded from a lot of the anxieties that their peers have faced.

My son, my youngest, is simply grateful to have a garden and the amount of free toys we collected during lockdown from neighbours clearing out threatens to overwhelm us. My daughter; bright, rule-bound and interested, innocently asks me “did Boris Johnson say we can have a play-date/go to soft play yet?” as if I have a personal hotline to the “manager of the country”.

She’s had little difficulty understanding the age-appropriate advice her Dad and I have given her and we have done our best to educate without terrifying her. I realise we are fortunate we can both work from home, in a house that is adequately large for our family and with a lovely garden and community to live in.

Maidstone, Kent has been largely compliant with government advice and though some of our nearby hospitals have struggled, we have been fortunate not to have been overly affected by the lockdown, nor lost anyone we know or love to the infection.

The health of our son has been affected, however. Whilst the country fixates on the important subject of education, for many families, it’s the social, emotional and physical development of their babies and children that has been a major casualty.

Our own story – of three operations during lockdown – was a tough ride. We rushed our son to hospital on 15th March with problems resulting from an operation 9 months prior. Although it was before lockdown, it was when hospital policy restrictions were beginning to be brought in and after a transfer to a London hospital, we were faced with one of us having to return home.

My son and I after Covid screening

The further two operations he was subsequently forced to undergo had to happen with just one parent present. As a pregnant, worried mama (estimated due date 8 September), it was a difficult time in late April and again in early May. 

The first, emergency operation involved inputting a suprapubic catheter (directly into his abdomen) and we spent 6 weeks sourcing kit to help us maintain it and changing the dressings on our terrified, struggling 2 year old. He quickly lost trust in nappy changes and bathing and eventually we had to deal with his trauma alone – as well as his physical care. I spent hours on the phone talking to GPs, health visitors and third sector charities seeking advice about how to help our baby.

He was terrified and all we could do is hold him down the best we could and treat his infected wounds when they occurred and comfort him through pain and fear.  Our local health service either could not or would not assist us however hard we tried and I scoured pharmacies for medication and the requisite medical accoutrements – saline syringes, flush kits and dressings – to keep his wound and catheter clean and functioning and keep us out of A&E, where our pleas for assistance were constantly redirected.

Racing about with a burgeoning bump: the search for supplies and drugs

When his catheter got blocked, I had no choice but to run into town and visit every pharmacy in search of what I could use to unblock it. I didn’t know anything about looking after it nor that it might get blocked. As the minutes passed and my son’s bladder got more and more painful, it became more and more desperate and I was soon running between pharmacies on the phone to my husband giving me reports on his pain and distress levels. The health of my bump would have to wait. Rousseau needed me to get him some help – and fast. Our local GP practice was worse than useless and the struggle to get him the anti-bladder spasmodic medication would warrant a novel on its own. The expense of an essential medication – especially for a 2 year old – should never even be mentioned, but it was.

Empty shelves – the nappy hunt was on

The horrors of trying to find nappies when we needed twice as many was equally traumatic on exiting hospital. It was a full-time job looking after him in those early March days. The idea that being pregnant meant I shouldn’t be going out much at all had to be ignored entirely.

It is only these last few weeks we have managed to get him into a bath and have his nappy changed without him crying and screaming in panic. It has been a long process, with no professional guidance on how to deal with medically-induced trauma in a child so young. No one could help, apparently.

For the parents of children with chronic conditions and complex medical histories, however, the lockdown has had major implications and outcomes so far, anecdotally, seem to be poor. So many of our population have tragically lost their lives to Coronavirus. Others still have had their lives altered forever by a lack of access to adequate care as the NHS struggled with the weight of treating Covid-19.

“Parents and kids with special needs were left to just endure. No support. No respite. Nowt.”

Laura Newton, mother of 4

Laura Newton is a mother of 4 children with varying levels of special needs. Jared, approaching 11, who has AUTS2 syndrome, is the eldest. His condition means that he’s classed as “failure to thrive” and has hyper mobility. The way that he walks on his toes has deformed the tendons in his legs. He is non-verbal and cannot communicate as he cannot use signing or other communication aids.

His ability to walk in unfamiliar surroundings is limited and he is entirely dependent on his wheelchair. His prescription makes him extremely short-sighted (-8) but he can’t tolerate glasses and Laura describes him as having the mental age of a 10 month old. He weighs just 20kg, is the average height of a child of 6 and his high pain threshold means he can be hurt or sick without anyone realising. His sleep patterns give him an average sleep time of just 90 minutes a stretch.

Zeeva, Jared and Evangeline

Before lockdown, Jared was in a local special needs school where a lot of his other appointments also took place to save on travel time. He had a full programme of activities to support his development including hydrotherapy and physiotherapy; regular support from Occupational Therapists and dieticians to help him get the best from the life he leads.

Laura’s second eldest child, Zeeva, is 9 in October and she has an unknown condition that has lead to Global Development Delay. She was diagnosed as Autistic at the age of 2 but moving house meant that their new locale, Cornwall, would not accept her diagnosis and provide support.

Zeeva also has physical mobility issues caused by rotated bones and even though she is in mainstream school, she cannot write beyond her own name.

Evangeline, 6, is neurotypical but in need of heart surgery. The surgery is planned to happen in Birmingham; a long way to travel from South West Cornwall. Coronavirus hospital policy restrictions mean that Laura or her partner will of course be expected to attend with – and support Evangeline – for that surgery totally alone. Ronald McDonald houses are all booked up and the nearby hotels to the hospital are very expensive.

Laura’s youngest, Morwenna, is 19 months and she has had multiple allergy and paediatrician appointments cancelled.

Interminable uncertainty – how long will this last?

With four children and no respite or adequate support, Laura’s mental health has suffered enormously. Jared needs 24 hour care and the uncertainty around how long lockdown might last was interminable for the family. When lockdown rules around travelling for exercise were relaxed, their lovely village was suddenly inundated and the family didn’t feel safe taking the girls out.

Jared stayed at home and getting adequate education and stimulation for all 4 children was nigh on impossible. It was simply about endurance for Laura and her partner.

Jared’s school eventually offered him a place, somewhat reluctantly, with conditions Laura suspects were designed to dissuade her: he would be with two staff members he doesn’t know and in a room that he’s not used to.

Laura argues that whilst the general population were allowed to queue 6 hours for access to IKEA, children like hers were ignored and forgotten. She believes that respite for parents of special needs children should have been a priority and whilst the government crowed about the fact children with additional needs were able to go to school, the reality of the situation was far different.

Daily Mail report on Ikea opening at Warrington

That’s a view that was upheld by Katy Bennett, a paediatric Occupational Therapist (OT), who said that several disabled children were not safe to be at school. There are some children with severe disabilities that are otherwise healthy, but for some, their various conditions meant that Coronavirus was far too much of a risk.

Parents were also reluctant to expose their children to potential infection, too, so pulled their children from school before the schools were mandated to close.

Katy used to work within the NHS but now provides private OT sessions to children – this is often funded by compensation provided to children with brain injuries or by the local education authority whereas some parents have the ability to self-fund.

Katy provides Occupational Therapy services in Durham

Katy explained that Occupational Therapy was about helping children achieve the best level of sensory arousal and security in their environment to enable them to thrive and learn.

The work of an OT is to support independence skills; or “activities of daily living”. She will assess an environment for danger, help parents devise visual prompts and help devise techniques to develop the sensory system of children who are both chronically over- and under-stimulated.

She mainly works with children who have a physical disability, although sensory processing disorder is also one of her main areas of expertise. Before lockdown, her caseload was about 12-15 children who had weekly home visits. Her last week of seeing any children was the first week of April.

Parents: it’s on you now

Technically, she says, she is classed as a key worker and the children could have had her present, but parents were overwhelmingly against anyone visiting their homes. The main bulk of Katy’s work then became less about the children and their development, but more about supporting the parents through what was clearly going to be a difficult time.

Focusing on creating home packs to help parents replicate some of the work she did with their children at home, some parents were able to follow the instructions and fill their children’s lives with the same – or similar – activities they were used to. Others, perhaps with other responsibilities, work pressures or additional children – were less able to do so.

Many of the children Katy works with do not possess the cognitive ability to benefit from video calls and Zoom calls were simply a poor substitute for the physio and positioning work that Katy does. The responsibility for therapy was suddenly falling entirely to parents.

Some children require 24 hour positional support and their lack of muscle tone – if it’s not corrected – will lead to irreversible damage to their positional abilities, muscle tone and bone structure. Katy described what would happen to some cases as “life-shortening” and agreed when I asked whether it could mean catastrophic, permanent deformity. It’s clear that the lack of support provided to some of these children will result in life-changing, path-altering problems throughout their potentially shortened lives.

Rise in child abuse

Katy also brought up the unsavoury and worrying trend of an increase of abuse against children of all abilities – but it’s more common with children requiring extra support, especially where respite is suddenly removed.

The case of autistic 10 year old, Dylan Freeman, who died in mid-August, allegedly at the hands of his mother, is an unfortunate illustration of this worrying time. The son of celebrity photographer Dean Freeman, Dylan also had Cohen syndrome and other related conditions. His mother is alleged to have admitted the murder in phone calls. The court case has been adjourned until 4 November.

The law and disability rights against the backdrop of Coronavirus

The plight of the disabled during Coronavirus does not seem to be a priority for the government, however. Worrying changes to the law around disability rights have been eroded. If you are to be detained under the Mental Health Act, currently there is no longer a need for two doctors to agree – it’s now just one. A change that mental health charity Mind have already expressed deep concern about.

Unintended consequences: an assault on disabled people’s rights

People who rely on lip-reading to communicate are struggling to understand caregivers and medical staff; I heard of one woman who was in hospital alone – completely unable to understand what was happening to her for days – because no one would remove their mask to talk with her.

Lipreading masks: impossible to procure?

People who have mobility issues are struggling to get to appointments without their carers; women with severe trauma are attending pregnancy scans alone and the neurodiverse are struggling to communicate with medical professionals without the support of their usual carers.

Coronavirus lays bare the “fragility and inhumanity of the neoliberal system that characterises British society”

Dr Sara Ryan, Senior Researcher and autism specialist at Oxford University

Coronavirus has meant that disability rights have had to take a backseat and those who need people with them to assist them are finding they need a very strong constitution to fight for the support they require.

Those who have the ability to do so are more likely to be able to fight for the rights afforded to them; others won’t be so able.

Various charities and pressure groups are working hard to prevent Coronavirus wreaking havoc on the rights of the disabled but it isn’t happening fast enough to prevent children like the ones Katy works with from suffering permanent, lasting damage. It doesn’t help mums like Laura with their children’s needs and respite.

A test legal case must surely only be weeks away, challenging specific hospital policies and actions taken under the cloak of the Coronavirus Act.

Do we need a test legal case?

The Equality Act 2010 and how it interacts with the Coronavirus Act 2020 would require a challenge in the High Court or even the European Court of Human Rights (which we are still underneath, despite Brexit) to really overturn changes to the law.

Coronavirus Act ‘easements’ to the legal duties on Education, Health and Care (EHC) mean that “the absolute obligation to deliver the provision in EHC plans under the Children and Families Act 2014 has been temporarily ‘eased’. Instead, local authorities must now use ‘reasonable endeavour’ to ensure it is made.” according to Dr Sara Ryan, Senior Research Lead at the University of Oxford.

In a passionate article arguing that the pandemic has “revealed the fragility and inhumanity of the neoliberal system that characterises British society”, Dr Ryan, whose son, Connor died at the age of 18 in a residential unit, suggests “disabled people are still treated as disposable people with inferior bodies and mind”.

Not sure anyone could argue with that for a moment. QED.

Further Reading & Support

Starline – New national helpline for parents: 0330 313 9162

Equality and discrimination in employment during the COVID-19 Pandemic (focus on disability, pregnancy/maternity and age) by barrister Sara Bowen

Equality and equal rights impact of Covid-19 by Equally Ours

COVID-19 Support and Guidance from the Council for disabled children

Coronavirus Spotlight: What does the Coronavirus Act 2020 mean for children and young people with SEND

NSPCC support for parents and children during Covid-19

Disability Rights UK on Covid 19 and the rights of disabled people

Social Care Institute for Excellence COVID-19 guide for carers and family supporting adults and children with learning disabilities or autistic adults and children

Mencap support and advice in easy-read

Voices of social workers through British Association of Social Workers Covid-19 survey results

Unequal impact: Coronavirus (Covid-19) and the impact on people with protected characteristics (UK Parliament)

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