Making sure every child with complex disabilities has the best start

Vicki works in our policy team. She makes sure the government considers the needs of children with complex disabilities and their families when making decisions, so every child with complex disabilities has the best start in life. 

While the last year has been hard for lots of us, for children with complex disabilities and their families, Covid-19 has been especially tough. Many haven’t been able to go to school. Some have been shielding to protect their health. Most have been cut off from the family, friends, and professionals they rely on to live safely and have the best start in life. This has had a huge impact on their education, health and wellbeing. I’ve seen this first hand. 

School isn’t just a place where children with complex disabilities learn, though. It’s a place where they receive vital therapies, such as physiotherapy or hydrotherapy. It’s also a place where many children receive personal care services too. When schools closed, so did access to all these services for children with complex disabilities. 

Homeschooling was also a challenge for many children Sense supports. Some children couldn’t engage with virtual lessons, and others struggled to get work in a format that was accessible to them. 

At the same time, the law that entitles children and young people to care and support changed. It meant that many local authorities stopped providing vital services to families, such as respite care, when they needed it most.  

A challenging return to school  

Schools reopened at long last in September. While the government and media reported that children had safely returned, this wasn’t the case for many of the children and young people Sense supports.  

As a result of the temporary law change, and conflicting guidance from the government, many schools weren’t able to plan how to support disabled children to safely return. Other disabled children were also advised to continue to shield because of the risk to their health.  

This was the case for five-year-old Zach. He has an extremely rare condition called Yunis Varon which affects him in a number of ways. He has no vision at all – he can’t even distinguish light from dark – though he does have some hearing. He also needs a ventilator when he sleeps and gets his food through a tube. 

During this time, I heard how families like Zach’s felt forgotten about, and exhausted after spending months being their child’s teacher, carer and parent at the same time.

Vicki Johnstone, Sense

From beginning to end, it was vital to listen to families like Zach’s and make sure they were considered when the government made its decisions.  

As a result, we could tell the government about the impact of the pandemic on children with complex disabilities.  

We could check that families knew what their rights were.  

We could tell ministers that the changes they’d made to the law were making things even worse for families, and help them to solve these problems.  

How your support helped 

Without your generous support, Zach and his family wouldn’t have been able to access the specialist support they needed. Our Children’s Services team sent Zach’s family lots of activities and resources for him to take part in. He could also take part in our virtual support sessions.  

Zach enjoyed joining in with the sensory stories and using the musical instruments Sense provided him with. He especially loved feeling the vibrations as he banged the ocean drum.  

I’m really pleased that Zach’s now back in school. It’s lovely to know that my colleagues and I worked with Zach’s school to get him back into education, where he can get the specialist care he needs.