Supporting children with disabilities is a fundamental role of children’s commissioners, who have a statutory duty to children in care, away from home and children who are cared for by a social worker – and children with disabilities are disproportionately represented in these groups.
Many disabled children receive support through the Commissioner’s Help at Hand information and advice service. Over the summer Help at Hand has been trying to help Salma, who has a severe cognitive and physical disability. Salma lives at home with her mother, who is her dedicated carer. Salma lives in the dining room and has no access to the bathroom, kitchen or bedroom because the house has not made the necessary adaptations to accommodate a wheelchair and other disability aids. This has been going on for years.
The Children’s Commissioner has written on Salma’s behalf to the Director of Children’s Services and the Integrated Care Committee, raising the matter and calling for urgent action. Help at Hand hopes that this is the push she needs to get what she needs, and has needed for a long time.
Sadly, Salma’s case is not an isolated one. Many children with disabilities are not getting the support they urgently need. Help at Hand has heard many stories of children struggling to access their Education, Health and Care Plans (EHCPs), which are crucial for receiving vital support. Other children and families are seeking support because their child’s plan is not being followed, affecting their ability to go to school and live a healthy, happy life.
A particularly worrying trend highlighted in the Commissioner’s report published today is the poor quality of care children are receiving in unregulated settings. In one case heard by Help at Hand, an employee contacted them with concerns about an organisation that allegedly provided a day centre (non-residential care) for disabled children aged over eight, which had been recommended by a local authority to the family of a disabled child. Concerns ranged from physical abuse of children to the provision of a service that should be regulated. Despite reporting this abuse, few sanctions were imposed, below the threshold for criminal prosecution, as the service was unregulated.
Another problem is that carers supporting children at home are not properly regulated. Help at Hand has heard very worrying cases of unregistered carers who are ill-experienced and ill-prepared to manage children’s complex needs because the type of “personal care” they are providing falls outside the scope of what is permitted under the current Care Quality Commission definition.
Another theme emerging from Help at Hand’s case analysis is the problem of some local authorities failing to find suitable care for children and pushing the responsibility onto parents – some children and parents may prefer direct payment, but this should be an option.
The Children’s Commissioner is determined to close all loopholes that lead to disabled children receiving poor or unsafe care. To address this issue, the Commissioner today set out a number of recommendations in her report, “We All Have a Voice”, including a transformative vision for disabled children, widening the definition of “personal care” to allow the Care Quality Commission (CQC) to inspect all services and settings in which care is provided to children, and ensuring that all care for disabled children funded by local authorities is properly regulated, including through direct payments to parents or carers.
We hope that the Cabinet Office’s upcoming Disability Action Plan will provide an opportunity to advance this much-needed reform.
Previous blogs about Help at Hand’s support for children with disabilities can be found here.
Help is on the way: Support for disabled children in care | Children’s Commissioner for England (childrenscommissioner.gov.uk)
Help is on the way: How the Children’s Commissioner’s advice service helps children and provides insight into family reviews | Children’s Commissioner for England (childrenscommissioner.gov.uk)
If you are a child or family member who needs emergency help, please call us on 0800 528 0731 or email us. [email protected]
*Identifying information has been changed to protect the children’s anonymity.