Parent carers of disabled children are being failed by a care system that does not care for them, according to a letter from Anna Bird, chief executive of Contact, the charity for families with disabled children.
Systemic failures leave families without support
Bird says that for too many families raising disabled children, the care system fails to care. She highlights the story of Matilda Davis, a mother who died by suicide, as an example of what happens when families do not get the support they need.
Parent carers need timely access to support in the home, short breaks, and services that recognise and respond to their own needs as well as those of their disabled child. Most importantly, families need support early, before exhaustion becomes a crisis.
Legal gaps and rising complaints
The right of parent carers to have their needs assessed is currently scattered across four separate pieces of legislation, making it easy for stretched services to overlook. Bird says the Law Commission's proposal to create a single duty to assess the needs of parent carers would make a significant difference, and urges the government to adopt the recommendations in full.
Contact's helpline has seen an increase in inquiries relating to complaints about social care in recent years. Many of the problems driving complaints are due to systemic failures, such as failing to assess needs, cuts to support, delays, and shortages of suitable staff and local services.
Call for urgent action
The instability and lack of support families experience in childhood directly feeds into the adult social care crisis. With Andy Burnham's focus on fixing adult social care, Bird argues that the system supporting disabled children and their families must be addressed with equal urgency.
She concludes that we owe it to Matilda's family and to thousands of parent carers across the country to listen to their experiences and act.
