Vicki works in our policy team. She makes sure the government considers the needs of children with complex needs and their families when making decisions, so every child with complex needs has the best start in life.\u00a0<\/p>\n\n\n\n
While\u00a0the last year has\u00a0been hard for lots of us, for\u00a0children with complex needs and their families,\u00a0Covid-19 has been especially\u00a0tough.\u00a0Many haven\u2019t 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\u00a0have the best start in life.\u00a0This has had a huge impact on their education, health and wellbeing.\u00a0I\u2019ve seen this\u00a0first hand.\u00a0<\/p>\n\n\n\n
School isn\u2019t just a place where children with complex needs learn,\u00a0though. It\u2019s a place where they receive vital therapies, such as physiotherapy or hydrotherapy. It\u2019s also a place where many children receive personal care services too.\u00a0When schools\u00a0closed, so did access to all these services for children with complex needs.\u00a0<\/p>\n\n\n\n
Homeschooling was also a challenge for many children Sense supports. Some children couldn\u2019t engage with virtual lessons, and others struggled to get work in a format that was accessible to them. <\/p>\n\n\n\n
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. <\/p>\n\n\n\n
Schools reopened at long last in September. While the government and media reported that children had safely returned, this wasn\u2019t the case for many of the children and young people Sense supports. <\/p>\n\n\n\n
As a result of the temporary law change, and conflicting guidance from the government, many schools weren\u2019t 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. <\/p>\n\n\n\n
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 \u2013 he can\u2019t even distinguish light from dark \u2013 though he does have some hearing. He also needs a ventilator when he sleeps and gets his food through a tube. <\/p>\n\n\n\n
\nDuring this time, I heard how families like Zach\u2019s felt forgotten about, and exhausted after spending months being their child\u2019s teacher, carer and parent at the same time. <\/p>\nVicki Johnstone, Sense<\/cite><\/blockquote>\n\n\n\n
From beginning to end, it was vital to listen to families like Zach\u2019s and make sure they were considered when the government made its decisions. <\/p>\n\n\n\n
As a result, we\u00a0could tell\u00a0the government about the impact of the pandemic on children with complex needs.\u00a0\u00a0<\/p>\n\n\n\n
We could check that families knew what their rights were. <\/p>\n\n\n\n
We could tell ministers that the changes they\u2019d made to the law were making things even worse for families, and help them to solve these problems. <\/p>\n\n\n\n
How your support helped <\/h2>\n\n\n\n
Without your generous support, Zach and his family wouldn\u2019t have been able to access the specialist support they needed. Our Children\u2019s Services team sent Zach\u2019s family lots of activities and resources<\/a> for him to take part in. He could also take part in our virtual support sessions. <\/p>\n\n\n\n