There is a major gap in service provision to address emotional wellbeing of parents and carers of children newly diagnosed with an autism spectrum condition. Parents and carers often feel anger, denial, disbelief, guilt, self-blame and hopelessness. There were 446 pre-school and school age children diagnosed with ASD in Coventry & Warwickshire in 2016. This is the highest rate outside of London.
Autism spectrum disorder (ASD) occurs in 1% of children in the UK. The lifelong nature of ASD has severe implications for parents/carers of children with the condition. Parents of children with ASD have elevated levels of stress and psychological distress, compared to parents of typically developing children. Upon receiving the diagnosis of ASD, many parents feel anger, resentment, denial, doubt, disbelief, guilt, self-blame and hopelessness. There is currently a major gap in service provision to address parental/carer wellbeing and health, impacting not only on the parents but also on the child with ASD and the wider family. Provision of innovative support to these parents is therefore necessary.
We are looking for a social innovation that would provide a quality flexible emotional support that would enable parents and carers of children with autism spectrum disorder to seek support anytime and anywhere.
Carers Trust Heart of England exists to improve the lives of family carers and the people they care for. We were formed in 2015 by the merger of the two principal organisations that had been supporting carers for many years – Coventry Carers’ Centre, Crossroads Care Coventry and Warwickshire. We respect the individuality of carers and people with care needs and seek to promote their choice, independence, dignity and safety. We believe that carers must have access to high-quality services that enable them to benefit fully from the support we can offer.
We provide help for parents with children who have ASD but the services we provide are limited and we are aware that parents’ emotional wellbeing affects the level of care they provide to their children.
The support for parents/carers’ emotional wellbeing is mainly limited to a volunteer-led programmes. These only reach about 40-50 parents a year and are restricted to parents/carers who can attend face to face groups in the day time. It is not always available nor suitable for all.
Parents and carers have told us that they would value more frequent and flexible provision, one that would enable to seek support anytime, such as online or as a mobile app. We are not aware of any such provision and are seeking a solution to resolve the looming crisis following diagnosis rates in Coventry and Warwickshire last year.
There is a dedicated parent support worker within our team. We provide free venues for volunteer-led support programmes. We work with the NHS as a referral service for parents who have received new diagnosis to provide support beyond the clinical environment.
We would be looking for solution providers with a sustainable model of provision where possible. And working together, combining resources to seek additional funding beyond the Social Challenges Innovation Platform grant.