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Matilda Davis’s story should force us to confront an uncomfortable truth and something that parent carers tell us every day: for too many families raising disabled children, the care system fails to care (Matilda in pieces: what one mother’s suicide reveals about the carers broken by the system, 11 August).

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.

Matilda’s story exposes everything that is wrong with the system. 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. That’s why the Law Commission’s proposal to create a single duty to assess the needs of parent carers would make a significant difference. We urge the government to adopt the recommendations in full.

Contact’s helpline inquiries relating to complaints about social care have increased in recent years. Many of the problems driving complaints are due to systemic failures, such as failing to assess needs, cuts to support provided, delays and shortages of suitable staff and local services.

The instability and lack of support that families experience in childhood directly feeds into the adult social care crisis. With Andy Burnham’s focus on fixing adult social care, it’s vital that the system that supports disabled children and their families is addressed with equal urgency. We owe it to Matilda’s family, and to thousands of parent carers across the country, to listen to their experiences and act.
Anna Bird
Chief executive, Contact, the charity for families with disabled children

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