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Parents and children with SEND need additional support

With schools and day-care shutting down during Covid-19 lockdown, parents became fulltime teachers and carers, while many also balanced working from home and managing day to day life. Families have had to adapt to this new way of living and it has been especially challenging for parents of children with special educational needs and disabilities (SEND). Practically overnight, parents of children with SEND went from having high levels of support to having virtually none and many are struggling to cope at home. Healthwatch Camden has been asking local parents of children with SEND about their experiences during Covid-19. 

 

Parents of children with SEND are experiencing increased stress and anxiety, which is contributing to lack of sleep, stress on siblings, and family strain.

“Parents might have been coping well at the beginning, but now we are experiencing exhaustion… Especially now that it’s been over 3 months.”

“We haven’t slept for 2 nights now.”

“I think it would have been nice if when we could have foreseen that the lockdown was coming if we could have had a bit more warning. We could have better prepared the vulnerable. I hadn’t got stock in of the special things I need to look after my son. If I had warning I could have made arrangements for my other son to go to stay with relations so not with his autistic brother screaming all the time and could do his homework etc. I wish I had been able to prepare.”

 

Many parents of children with SEND are struggling to cope with many of the services they typically rely on being stopped or changed to a remote service.

They typically rely on carers, therapists, respite programmes, school, and other supports for their child.  Parents of children with SEND are now having to do all of the care typically done by outside help.

“My son used to have physiotherapy. Now I do all the manual handling. He’s in a wheelchair. He has a hoist but all of the changing and bath I do on my own. I’m exhausted.”

“It’s a crazy time. We live in a small space and are getting no carers or support. He doesn’t understand so I have to keep him from running out of the flat. We’ve only gone out 2 or 3 times since lockdown. His behaviour has gotten much worse. We need to think about a long term plan and what to do.”

 

Due to the disruption of services and routine, parents are seeing detrimental social, emotional, and physical impacts of lockdown on their children.

“My son needs routine, so this has been really hard for him.”

“We’ve noticed a significant loss in skills with other children as not getting the socialisation that he’s used to with school and other activities and community engagement and lost routine. Learns by repetition so confused and goes into himself and can really only focus on the iPad.”

“The first four weeks was difficult. I am physically and mentally tired. And the children are tired of it all too. [My son] had been very very difficult. Not everyone can follow this guidance especially if you have a child like [my son]. He is scratching and eating the wall paper and throwing things through the mailbox.”

One mother was concerned because her son was having an issue with his splints, but they couldn’t resolve the issue due to his GP being closed. Another couldn’t fix the wheelchair buggy required to take her son outside.

“It’s dangerous for my son to put on weight because of his underlying metabolic condition. He’s getting heavier in lockdown and is always glued to a screen. I’m frightened. School has said if they want them to help then they have to bring him to school but he’s in the shielding category. I don’t know what to do and need help.”

Prior to lockdown, many parents who had children in residential care made difficult decisions to either bring their child home and care for them without support or leave their child where they were and not see them for months. One mother said:

“I haven’t seen my son for 11 weeks now and we don’t know when we will see him again. He repeatedly asks for mummy and daddy. We used to visit regularly. We told him he can Skype anytime but now he Skypes us up to 20 times a day. He is showing distressed behaviour.”

 

Children with SEND are especially vulnerable due to either underlying health conditions or behaviour that makes it hard to keep them safe from the virus.

One mother decided to completely isolate because her son has a tendency of putting things in his mouth when he is outside, and she couldn’t risk him getting infected.

“We are totally isolating. It’s too risky with my son to go out. He puts everything in his mouth.”

 

For many, remote or digital services were inadequate for children with complex needs.

Of the parents we heard from with a child with SEND, only some had been offered digital care services since lockdown began. Some parents appreciated these remote services and would have liked a more extensive digital offer. For others, these remote services were unhelpful or inadequate for children with complex needs.

For children with severe disabilities, video or phone consultations cannot replace face to face ones.”

One main issue reported with Zoom sessions was that parents still had to set up and facilitate, which voided them of a short-break and often ended up being more work than it was worth. Also, some parents struggled themselves with the technology and had to rely on an older child to help.

One father said it took him 40 minutes to set up for a 15-minute session.

“First session didn’t go well – led to lots of frustration. Involved loads more work as I had to facilitate the session and the connection can be bad and that’s frustrating for the child. The online stuff he tries to grab. The virtual stuff is really hard work.”

 

Parents of children with SEND are finding the social care packages offered right now to be insufficient and frustrating to deal with.

“People ask me how it’s going but there is nothing much that can be offered. Telling them how difficult it all is doesn’t really help us. I am batting off people offering things that don’t actually help at all and then the takeaway is that I don’t want or need any support which is not the case.”

Another mother was offered a day respite service that was two bus rides from her house, so she declined due to inconvenience and fear of contracting the virus on public transportation. Because she declined services, her care worker categorised her as ‘declined service’ and didn’t contact her again.

“I called the social services line this week but no reply… They wanted me to meet with a new social worker but why a new person during the pandemic just meeting her through the phone what’s the use?”

Families with children with SEND need greater support right now including respite and short-breaks. For some, a daily Zoom call would help and for others, physical in-person intervention is essential. Parents know best what their children need and want the ability to use direct payments freely during these challenging times.

 

As lockdown restrictions are eased and schools begin to re-open, many parents of children with SEND are left feel scared and uncertain about the prospect of their children returning to school.

“It’s really hard to explain to him [my son] what social distancing is.”

“Why can kids go to pubs, shops, take the tube, but kids cannot go to school? It doesn’t make any sense to me so how am I supposed to explain it to my children? Especially my child with ASD. Surely getting kids back to school should be the government’s number one priority, yet why is it the last to happen? The government are being selective with what they share.”

Camden parents want clear communication about how returning to school is going to work, and they need to trust that it will be safe. Parents of all children are worried about infection control in schools. Different strategies per school and per age group are making things confusing for parents with multiple children.

“There is nothing that this government is telling us is believable. It’s not clear and I am following my instincts which say no it’s too soon. I don’t trust. You have to follow your instincts sometimes as a parent.”

 

Each Camden family is unique and needs a personalised support package that works for them, which includes respite for parents. As we ease out of lockdown, parents and children with SEND need additional support and mustn’t be forgotten about or ignored.