Getting the best start in life
All disabled children and their families deserve the best possible start in life. In 2018, Scope asked more than 2,000 adults about the challenges and opportunities of parenting a disabled child.
Here’s what they told us:
- Getting the right support is hard. More than half found it stressful having their child diagnosed.
- Attitudes to disability need to change. Nearly 90 per cent of parents felt judged by society.
Too many parents are left to manage alone. More than 4 in every 10 parents had never been offered emotional support (Scope, ‘Now is the Time’ 2018).
Shell, mum to Oliver, aged 4
We were given a book to take away, but to be honest, I didn’t find it particularly helpful. I think, especially once you first get the diagnosis, the local authority needs to be better at making support available.
Getting the right support
Parents of disabled children need timely, relevant information and support. And there’s no-one better to provide it than people who have been there themselves. That’s why we’ve set up new services that deliver just that.
Navigate is an online mentoring and emotional support service for parents, available at the point of diagnosis. Because it’s online, our mentors, who have lived experience of disability, can provide support to families wherever they are in England and Wales.
In 2019, two-thirds of families using Navigate said they felt more emotionally resilient after our support.
Parents Connect is an in-person support service in Leeds, offering parents of disabled children the opportunity to meet and talk with other parents.
Alongside these support networks, we recognise the particular challenges presented by disabled children who have problems sleeping.
Scope runs Sleep Right in East London, Leeds, Northamptonshire and Peterborough. It provides practical sleep support for families with disabled children, making a huge difference to parents’ resilience and the wellbeing of their child.
Now is the time
We also want change to come from the top. We’re proud to be one of 60 charities in the Disabled Children’s Partnership. Together, we’re calling on the government to take a long overdue lead on disability. We want the government to appoint the first ever Minister for Disabled Children and Families, dedicated to improving policies, services and funding.
In January 2019, Emily, who has hydrocephalus, a condition in which cerebrospinal fluid accumulates within the brain, and her parents, Dan and Aimee, delivered a 40,000-strong petition to Downing Street. Like them, we won’t stop until the government gives families with disabled children proper funding and support, right from the moment of diagnosis.
Dan and Aimee
Our hope for the future is for disabled children and their families to have everything they need to live their lives, instead of fumbling around in the dark.
How we're doing
Since 2017, 5,200 families have accessed our services.
- we’re building a robust model of support based on what customers have told us
- more families in touch with each other, sharing experiences and feeling understood
- more disabled children sleeping better, with more energised parents.