Parents of children living with a disability have told us what a battle it feels to get even the most basic help or support. The system is difficult and overwhelming to navigate and it can be a lonely and isolating experience. People do not always feel treated with respect. The voices of children with a disability are not heard well enough. The pandemic has worsened this with many families being left with no support for months. There is no proper support into adulthood and families describe a ‘cliff edge’ of support as their child approaches 18.