What issues affect children and young people today? On our blog, our volunteers, staff, leaders and the young people we work with share their experiences and tackle the issues. Let us know what you think – leave a comment or send us a message about what you find on our blog.
Join Scope’s campaign to support disabled children and their families
There are more than half a million families in the UK with a disabled child. We've found that nearly two-thirds of families with disabled children can’t access the services they need close to home.
We're running our Keep Us Close campaign to help these families.
Kate's story is a good example of the problems this can create. Her family has been pushed to breaking point by the constant battle to get basic help for her two disabled children.
Please read her story and tell the government that families need better support.
Kate lives near Wimborne in East Dorset with her husband and two children. Ben is 11 years old and has complex needs including autism spectrum disorder (ASD), learning difficulties and kidney problems. Sarah, who is adopted, is 9 and also has ASD, as well as attention-deficit hyperactivity disorder (ADHD) and chromosomal abnormalities.
Each attends a different school, with each one taking 40-45 minutes to reach. This means that their children don’t get to know and mix with other local children, which can cause problems. For example, Sarah was going to Brownies with a group of girls who went to the same school and they all knew each other.
It was too hard for her to integrate. She began screeching more in order to get their attention, but the more she screeched, the less they wanted to be with her. It would then take a few days for her behaviour to settle down. It simply wasn’t worth it, and she stopped going to Brownies.
'You have to fight for everything’
Because they live in East Dorset, but Sarah attends school in West Dorset, it was also a struggle to get physio agreed for Sarah. This was partly resolved after Kate approached her MP.
She said: 'You have to fight for everything. It leaves you feeling tired and angry. You have to gear yourself up for a fight.'
Struggling with great distances
With all these journeys to consultants and schools, it’s hardly surprising that the impact has been felt by the whole family. For example, Kate has been known to take a 100-mile trip to take Sarah to school (travelling there and back twice in a day).
That would be hard enough, but she also has to factor in the behavioural transition for Sarah after having been cooped up in a car for 45 minutes at a time. As Sarah has ADHD, she struggles to sit still for this long.
Kate and her husband, Bill, struggle to get any time to themselves. One year, Bill had only one day’s holiday because he needed to use annual leave travelling to appointments. If Bill loses time during the day, he has to make up for it by working in the evening.
Easing family stress
If services were more local, Kate, Bill, Ben and Sarah – as well as other families across the country with disabled children – could feel part of the local community.
It would also allow them more time together as a family, and they could do the day-to-day routine things that most families take for granted, such as going to the park or the beach.
Please find out more about our Keep Us Close campaign and call on the government to provide better support for families with disabled children.