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Vaccines, masks...and fear: How children with disabilities have struggled during Covid

The world has struggled to explain Covid across the past 18 months, and the uncertainty around it.
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Photo: Pixabay

But some have suffered more than others, and among those particularly affected are families with disabled children.

Unable to maintain relationships with friends and family face-to-face, and often broken from their routines; the effects of the lockdowns; and the uncertainty have created enormous damage.

Throughout the pandemic Family Voice - a charity which helps to improve the lives of children and young people with disabilities or additional needs - has provided food support to hundreds of people, signposted families to appropriate services and highlighted the concerns of residents to key stakeholders,

Earlier this year Family Voice unveiled its annual report, which revealed that lockdown caused extreme anxiety, isolation and deprivation for many families with disabled children.

The effects were widespread in relation to finances, accessing food, loss of support services, isolation or lockdown impacting the behaviour of a young person with additional needs

At the same time, several positive changes in supporting young people with special educational needs arose, including a marked increase in participation between Family Voice, Peterborough City Council, the Cambridgeshire and Peterborough Clinical Commissioning Group and other partner organisations, in part due to a move to virtual working. It's hoped that those stronger relationships can continue in relation to SEND (special educational needs and disabilities).

 

Asta Remezaite, a parent representative for Family Voice, has two girls, one with a rare genetic disorder and one with mental health issues. She became involved after taking her children on a caravan holiday arranged through the charity, and saw the work that it does.

Speaking about Covid, Asta said: "There were some families whose children did well at home, but others really struggled, with no respite and no outside support. That was incredibly difficult.

"As an example, at the start of the pandemic people were bulk buying and supermarkets had to limit that. Now imagine having a child who has a very limited diet and can only eat two or three things - and you can only buy two or three at once."

"We have families who have high-needs children who were still unable to go out after the first lockdown. The risk was too high, and because everything was so fluid it wasn't clear cut, so they still had to self-isolate and couldn't send children to school."

Educational offerings were carried out remotely, which was not an ideal solution but at least offered some form of schooling. The deeper issue was - and is - in the mental health of the youngsters who were affected, and the parents who looked after them.

Asta said: "My own daughter thought she was going to die. Even when the first lockdown lifted she refused to go out because she said the virus was still here, and she was going to die.

"It was difficult to explain washing the hands and face, and distancing. One time we went out and she saw someone she knew, and the first thing she did was hug them.

"So it's difficult because you have to explain these things over and over again, and then one day they have to go back to school, so that's another confusing time.

"There are still families with lingering issues, because we don't know what will happen. We don't know if schools will reopen in September, or if we'll have another lockdown in the future. That's what causes anxiety.

"Schools are being brilliant, providing social stories and telling them who their new teacher will be and where they go. But things can change so quickly.

"We just have to keep going, keep smiling, and hope that life can go back to some form of normality for us.

Other issues have included masks - one of Asta's daughters is deaf, meaning that she is struggling to communicate with people - and getting the vaccines as vulnerable people. 

Autism and disability campaigner Nazreen Bibi has a 22-year-old autistic daughter, and Nazreen said: "She likes to have routine, and the uncertainty for her has been really difficult, particularly around trying to understand that she is vulnerable, but wasn't classed as it by the government.

"That meant trying to get her vaccinated was a challenge for me and her, and led to a lot of frustration.

"It confirmed, even before Covid, that disabilities were not prioritised enough. Accessing services, and trying to keep her safe, was also a challenge - we were really anxious for the whole year."

Nazreen believes mental health should now be the priority for the future as the full effects of the world around Covid are understood, as Family Voice and other organisations look to help those who may need it more. 

She said "During lockdowns we've used social media a fair bit, telephone calls, and workshops to provide reassurance. It's not enough, but it's there, for parents to share their experiences.

"Part of respite is being able to switch off the parent/carer role, but part of looking after yourself is being able to express yourself and the frustrations and tiredness of being a parent.

"So social media has been an amazing resource at times, but we worry about those parents who don't use it and may be sitting at home with a child with additional needs.

"This might be on top of not sleeping or eating very well, and worrying about finances, and then having to implement an educational plan - that's a massive challenge."


Other findings from the survey included: 

  • The vast majority of families taking part in Family Voice surveys have had negative experiences relating to support services and education
  • External political, economic and environmental factors are still impacting on how SEND services are delivered and experienced, despite a move towards co-production
  • Parents' views are being taken into account more often at assessment level, particularly among health services
  • More parents - especially those from 'seldom heard' communities - are interacting with Family Voice, largely due to the pandemic, through teams, workshops and other means. 

Family Voice Peterborough chair John Ravenscroft said: "Although this last year has been difficult we have worked to ensure we have helped as many families as we could.

"The team here at FVP have worked throughout the pandemic, and I would like to thank them for all their hard work and dedication, especially considering many of them have also had to manage their own caring needs."

Between April 2020 and March 2021, 310 parents were involved in meetings, events, online activities and discussions organised by Family Voice, with more than 100 professionals also taking part in virtual meetings and nearly 900 parent-carers having their say through online surveys and Facebook polls.

Findings from the surveys reveal that parents and carers have had an overwhelmingly negative experience during the pandemic in areas including education and support services.

With regards to education, all those who expressed a view on the effects on learning, home schooling and the impact on EHCPs (Education and Health Care Plans) had negative experiences, although all said they received good support from schools.

Similarly, there was an overwhelmingly negative response for support offered from the city council and communication surrounding support services.

In addition, 25 respondents said they saw increased challenging behaviour from the person they look after, 36 experienced a deterioration in their emotional wellbeing and 24 felt their anxiety increase.


Family Voice is the designated parent carer forum for Peterborough and is a member of the National Network of Parent Carer Forums.

Its main aim is facilitating parent participation and the co-production of services relating to children and young people with SEND.

The charity's impact has resulted in a new approach to ensuring the outcomes of EHCPs for children and young people are delivered, while the Local Offer - which details information about what SEND support services are available - has also been improved thanks to Family Voice's feedback.

Family Voice, which is based at the Orton Goldhay Community Centre, receives the vast majority of its funding from the Department for Education, CCG and council.
This has proved vital over the past year when the charity has been unable to offer its caravans in Skegness and Caister-on-Sea to families for respite, although bookings for both are now available.

Instead, it has instead delivered family activity vouchers for days out, as well as activity bags, hampers, Christmas bundles and wellbeing and pamper packs, and it has continued to hold information sessions and workshops which are available to watch online afterwards through its YouTube channel.

The annual report can be read in full here