The scandal of the children with complex needs told they’re not welcome back at school

While schools opened to welcome children back last week, we have been hearing disturbing reports who have complex medical needs have been told to stay away.

These children need support that requires aerosol-generating procedures (AGPs). This includes children with tracheostomies. I spent some time last week seeking further information, views, and experiences on the issue and discovered that this is fairly widespread, with many children being forced to miss out on their education at school.

Before we go any further, I need to be clear: this is unlawful and open to judicial review. I will include more details about the law later. But first, let’s understand the issue:

What is the problem?

Children who rely on tracheostomies and other respiratory tract suctioning will have been shielding during lockdown. However, at the start of August, the government told everyone there was no longer any need to shield. It has insisted that every child should be back in school.

The government issued guidance in “Safe working in education, childcare and children’s social care settings including the use of PPE” that states: 

Nowhere does it say that it is okay to tell the child they can’t come in. Local authorities must liaise with schools now who may be forced into this position and ensure they have the appropriate funding and PPE. 

Why hasn't this been addressed already?

It’s not as if this issue hadn’t been foreseen. Potential problems were raised during the summer and during a WellChild webinar in mid-August, DfE SEND adviser, André Imich said, described it as a challenging issue. This webinar was also attended by the SEND Minister, Vicky Ford. So the DfE knew. Mr Imich said it was an area to “tread carefully” and work together to learn from experience, finding solutions which might vary from one school to the next depending on the environment. 

But why do they have to wait for everyone to “learn from experience”? These children have already missed six months of education along with every child. Our survey showed how difficult children with disabilities found getting support for learning during lockdown. And now they are missing out again. 

The DfE were also alerted to the issue before lockdown back in March, when the Medicine in Specialist Schools steering group of the Special Schools Voice wrote to Gavin Williamson.

Many children are being denied an education

Here are the words of just a few of the parents whose children are stuck at home:

"My little girl is four and due to start school but the school have said she has be in a room with her one-to-one and not allowed near any of the children because she has a tracheostomy."

"Well that was short lived. [Son] was back to school despite the whole AGP palaver, but a phone call this morning saying the carer’s sick so he can’t go."

"Finding it hard today seeing all the back to school photos on Facebook and knowing my daughter is being excluded from this and not knowing how long for"

"What makes me sick is that, despite knowing the NTSP guidelines will be approved in the near future, there are so many local health mangers who aren't brave enough to do the right thing, even if not yet rubber-stamped by PHE. There is no risk to themselves in reality, it’s a clearly justifiable decision. It's excessive central control and red tape, not at all about genuine concerns for our kids or those around them"

Some schools have done brilliantly

Outside of the AGP difficulties, some schools have been absolutely stellar in their efforts to get children safely back – and we’ve heard from parents thrilled with the help provided (Click the tweet and add your shout outs!). 

Some SENCOs have been updating risk assessments and ensuring all children can come back

“I have created a risk assessment/ support plan for all of my students with EHCPS in light of what their provision will look like returning from lockdown. Most students provision will look different due to not being able to be withdrawn from some lessons, not being able to be taught in areas of the school they are used to etc. All of these plans were done by me speaking to parents in advance and identifying and potential risks/ issues the new or provision would look like them I have created them and sent them out to all parents/ carers. They will also be shared with staff on first day back.”

SENCO

“We do individual risk assessments anyway and now enhanced for COVID. I work in a special SEMH. The overall document detailing the reopening plan/ provision/ reasonable adjustments is in the pack for reopening which [parents] all have had a copy of. Parents have contacted us over the hols with messages or concerns but generally happy to send them back in. Any problems in September we will support the child, the team and the parents but we certainly won't be stopping any child attending school.”

SENCO

“Personally, my son has been allowed to return to school with additional PPE. We only actually had final confirmation of that yesterday though ready for a return this morning, and that was only after I sent them the NTSP guidelines which were published on Tuesday..... That is for an independent special school with whom I have a very close working relationship, most of the other parents I know have been told that their child can't return.”

Parent of child with tracheostomy

On the flip side...

On the flip side (there always is), some local authorities have been sending parents "disclaimers” to sign, asking them to agree to no social distancing measures or masks for on school transport. And risk assessments are still being used to justify preventing children from returning. This is also unlawful.

“No return for my son as they haven’t done care plans or risk assessments! They haven’t got a room suitable for him. I did ask why they have left it so late to tell me he cannot attend school, the response was ‘alongside [son’s] AGP requirements, he has complex medical needs’… I am totally bewildered, saddened and disappointed. Back to home schooling for us for the foreseeable future.”

Parent of child with tracheostomy

“My son with a tracheostomy hasn’t been accepted to return. Education are blaming health, health blaming education. I’ve been asking for an individual risk assessment to be completed since June as my son rarely has suction. I’ve offered to stay on site so if he was to require suction, I would remove him from the premises. This is pure discrimination”

Parent of child with tracheostomy

“My child has been excluded from attending school due to the AGP issues. I cannot express in words how cross I am, when I have personally been chasing various agencies and quizzing people in the AGP since June this year. On Friday I got a call from the head teacher telling us new guidelines has been sent to them and needed urgent risk assessments done for all the families this affected. I have been told they are unable to accommodate my child after these meetings…This is an example of exclusion from education due to someone's disability and I am furious this has been allowed to happen.”

Parent of child with tracheostomy

Confusion over existing guidelines

Children’s Complex Health Nurse, Rebecca Bedford, says the guidance is not clear around whether straightforward oral suctioning would constitute an AGP, and this is being interpreted differently all around the country.

“The suggested management technique for this is the same that is used in hospitals for COVID-positive patients. Staff are required to remove the child to a separate room from their peers, put on full PPE including a visor and FFP3 mask and then undertake whatever intervention is required. 

“For children requiring AGP’s this is often a time-critical procedure, so any delay would be potentially life-threatening. The suggestion to manage emergency situations is to remove all children and staff from the classroom whilst the procedure is undertaken. The room must then be left empty for up to an hour before anyone not wearing PPE can enter. For children that require long-term ventilation, the appropriate management would require them to be taught separately from their peers for the whole school day by somebody wearing full PPE.”

Rebecca points out that it is being assumed that a child has COVID-19, something that is not assumed of other children.

“As you can imagine the logistics of having to implement this in any school is mind-boggling. By treating children this way there is an assumption that they are COVID positive, when they are in fact well children. None of their peers are assumed COVID positive so this would suggest discrimination towards a specific group of children.”

There are guidelines, but Public Health England hasn't endorsed them

Rebecca Bedford says many children’s nurses from around the country have reported facing the same issue. Foreseeing it would lead to (illegal) exclusions, she's worked with a professional group of 30 paediatric nurses over the summer to try to lobby Public Health England to review the guidance. Despite numerous e-mails urgently requesting some action, nothing has materialised. 

In addition, experts from the National Tracheostomy’s Safety Project (NTSP) have recently produced guidance ‘Supporting children with tracheostomies back to school’ [PDF].  It describes how health and education staff can support pupils with complex needs to return to school. Rebecca says she’s been informed that while Public Health England (PHE) and the Royal College of Paediatrics and Child Health (RCPCH) have the guidance but PHE won’t endorse it because they were not involved in producing the document. 

Rebecca says, “Until this process is complete our hands are tied as health professionals, as the majority of trusts will not implement guidance that hasn’t been approved. Parents know that the NTSP guidance exists and cannot understand why, despite the issue having been raised repeatedly over the last eight weeks, there has been no progress.”

The never-ending thorny issue of PPE

Schools cannot magic up personal protective equipment. Masks for clinical settings such as FFP3 masks need to be properly fit-tested and other PPE has to be ordered and paid for. And with what?

Simon Knight, head of Frank Wise Special School in Oxfordshire told me: 

"It is essential that schools are supported to be able to deliver the guidance provided by DfE as successfully as possible, and there are significant costs associated with that.

"Whilst we are used to DfE making promises that it fails to fund, it is increasingly frustrating. I anticipate that the cost of additional PPE and cleaning materials alone will be approximately £25,000 per year, money that needs to come from somewhere and money that isn't currently in our budget."

In fact, another special school head on Twitter said they've calculated the additional masks needed for bathroom care, not counting the ones needed for gastrostomy feeds etc, will cost us them an additional £31,000 with no funding available.

So, what does the law say?

We asked our legal columnist, Hayley Mason, to lay out the law, so no one is in any doubt of what is expected:

"It is a significant concern that many families of children who have Aerosol Generating Procedures like tracheostomies are being told that their children cannot return to school under new COVID-19 risk assessments. 

"While section 42 of the Children and Families Act 2014 was temporarily modified from 1^st May to 31^st July to a ‘reasonable endeavours’ duty, it is now back in force. Section F of an Education, Health and Care Plan must be delivered for all children/young people who have one. Thus, if the school fail to deliver Section F, or fail to admit the child/young person, many of these families are likely to have a legitimate claim for judicial review against the local authority that maintain the plan, or a Disability Discrimination claim against the school. 

“If additional PPE is required to deliver care in school, the LA that maintains the EHC Plan will need to fund the additional costs of securing it to deliver the relevant provision. Risk assessments should not be being used to prevent children returning to school and any schools/local authorities who do so will leave themselves open for a claim to be brought.”

Hayley Mason, Director/Senior solicitor, SEN Legal & SNJ legal columnist

Some schools are improvising in order to get the children back

Without clear guidance, many schools are being creative, some with more success than others:

"My son is going to be the class with all the other children and will be suctioned if need be in a corner of the classroom. The hospital said he is no risk to any other child and should be treated the same as the other children"

Parent of child with tracheostomy

"The hospital my son is under has said he is no risk and sent the school and our care team the recommendation the national tracheostomy safety project released the other day, so we are allowed to follow those"

Parent of child with tracheostomy

 "My son is in a separate room, which he has to stay in all day. Two TAs in level 3 PPE. Can’t leave that one room"

Parent of child with tracheostomy

 "First my son could not attend until an FFP3 mask was fit-tested at school. Then it was he needed weekly covid negative to be able to attend. Now newest news is actually scrap all that he doesn’t need any of that just bring him in next week."

Parent of child with tracheostomy

“My son has a trachy and is vented. He’s paralysed neck down, so a wheelchair user. He wasn’t allow to return to mainstream, but can now if in a room with a carer and TA in full PPE. He can go outside with peers at break time, but he needs routine and an education 

Parent of child with tracheostomy

Our school has been great and offered two Zoom sessions per day. They want him to return but have to follow guidelines”

Parent of child with tracheostomy

Laura's letter of protest

Laura, another parent of a child with tracheostomy, has written a letter to her LA about the AGP issues and has given SNJ permission to include an extract:

“I feel a deep sadness and disappointment that in 2020 I am writing this letter to discuss the illegal exclusion of my daughter from education due to her disability. My daughter has a complex condition called Rett syndrome was in full-time education until 13^th March 2020.

Due to the AGP guidelines, the level of PPE required to suction my child has gone from zero (we have never been directed as parents to use any PPE)– to level 4 PPE.

With difficulty, I successfully arranged for my PAs to be fit tested and arranged the PPE in line with the current AGP guidelines. I was told that the level of PPE was unlikely to be dropped. I would like to point out at this moment that the guidelines are written from the viewpoint that the person being suctioned has Covid-19. The guidelines are suited to a controlled environment such as ICU or alternative hospital setting.  It has been confirmed that suctioning offers no more risk as an AGP than coughing, sneezing or spitting.

I want to know why the council feel it is okay to cause this illegal exclusion based on the need to suction, as there has been ample time to ensure that the various education settings to have the correct PPE to comply with the guidelines. I would like to know if those decision-makers will be also the same ones that agree for my child’s education to be met in the home environment and fund this. This will mean you will need to provide physio and speech and language sessions alongside all the other things within my daughter’s EHCP.

I know that this illegal decision was based on money. Because if it wasn’t, the correct PPE and relevant training would have been arranged – let’s face it, we all knew that September means back to school as directed by The Prime Minister.

My child has suffered greatly from mental health and has cried when she was denied access to school….

The transport company the council commissioned to transport our children has also REFUSED to transport her and URGED families to remove suctioning from their care plans – this frankly is absolutely disgraceful. So not only have we experienced exclusion from a special needs setting but also the council funded transport to this setting.

These guidelines actively exclude the children from their peers and learning environment for an hour each time they are suctioned. This disrupts their daily life. All because someone wrote this document who do not have to live this life or indeed see its effects. 

We have not been offered any alternative education…This situation has left us in a position where I am now unable to return to work as planned, [so I can] continue the 24/7 care for my daughter. This has a financial implication but more than that, it has an effect on our mental health.

Our family is already under a great strain. We have just navigated a metaphorical Everest with lockdown. At the last stride of Everest, you have forced us to now climb another mountain. The goal posts moved, the light taken away. 

Seeing my daughter sob because she can’t go to school was such a low point. The more time I have had to absorb that ultimately, she has been excluded because of her severity of disability, is the saddest moment of this year to date.”

Laura, mum of a daughter with a tracheostomy

It’s a widespread issue

Paul Watson runs a tracheostomy group on Facebook. He says a 2016 study by the charity Breathe on, found that there were approximately 3,500 children with invasive ventilation via a tracheostomy in the community, which correlates to about 35,000 children with a tracheostomy. He knows this issue has affected hundreds of families like his. He says of those who have been allowed to go back, many have been told they could only return with significant changes to their school experience due to AGPs. Paul said, 

“Our children have been forgotten about throughout, and this is continuing with the AGP issue.  "All children must return to school"....  except ours. Headteachers are in a difficult position, they're basically illegally excluding children because of their disability, but I think that in most cases it's unfair to make them the fall guy in this.  

“On the one hand they have been told to get all children back to school, but on the other they have a duty to their employees and pressure from their unions to keep their staff safe.  The current PHE guidelines are based on and written for hospital environments and are inappropriately being applied to all settings including schools.  In most cases it's simply not possible to meet the AGP requirements in a school environment - how many schools do you know with a spare room attached to each class? 

I worry about how to progress this issue.  The traditional route would be to take action against the school or LA to enforce the EHCP provision, but I worry that this would simply result in the headteacher stating that the school can no longer meet the child's needs and de-register them making their situation much worse.  I think it needs to be pursued at a national level as to why government departments have delayed taking action they know is necessary, and in line with the advice they have received, knowing that their delay is causing huge issues for disabled children.”

Paul Watson, parent of a young person with a tracheostomy, and SEND advocate

What education are they getting instead?

So if they are not in school, learning with their friends, what is being done to support them? Some parents say their child has been offered video learning with their regular TAs via school, but are as yet unsure when they'll happen or how their child will be able to engage with it. Others have the same experience as Laura, and have been offered nothing at all. 

The DfE-funded online resource, Oak Academy is launching its autumn specialist learning curriculum later this week, but parents should not be fobbed off if they are told to use this. Your child has a right to be in school with their peers.

What needs to happen

This issue needs to be tackled today, not when the Department for Education has done a bit of 'careful treading' and a bit of learning. The expertise is already available. The information, as we have shown, is already available. 

The government needs to urgently fund PPE in specialist and non-specialist settings to ensure children can attend. It’s no good issuing guidance from on high about what schools must do if they are not given the funding and equipment – and the space - to do it. It’s no good pushing the blame off onto schools that are doing their best with insufficient guidelines and lack of resources. The DfE MUST urgently convene a meeting with the actual experts today, listen to what they are told, and then do it, however much it costs.

Government response

The government put out a large update to Special Schools guidance the following day. In an email about the update, it included a paragraph on AGPs:

The government is committed to a full return to school for all pupils. There are a small number of children with complex needs that require AGPs to be undertaken where risks need to be carefully managed in the context of the pandemic and we are aware of the concerns being raised around this issue.

Schools, health and local authority partners need to work together on how the current guidance applies in their setting and to the specific children they are working with in order to enable them to return to school safely.

We have heard examples of good practice locally and are working with PHE and NHSE to establish whether any changes to the guidance or further information about practice principles are needed. It is important that schools communicate clearly with parents on progress towards supporting children who need AGPs to return to school safely.

Department for Education

Also read

• Special school heads think 14% of their children won’t be back
• SNJ in Conversation: Oak Academy’s improving SEND offer
• Coronavirus and SEND Education: 75% of schools ignored Government risk assessment guidance during the lockdown
• SEND Inspections on repeat, with families’ experience “essential” to new framework
• DfE on SEND failures inquiry: We’ll get back to you later (and it’s not our fault)
• SEND in schools 2019-2020: It’s just so depressing
• SNJ In Conversation with Dame Christine Lenehan, Director of the Council for Disabled Children

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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