The Sheffield Parent Carer Forum has published the findings of a survey of 320 parent carers from across the city.
Parents of disabled youngsters spent an average of 25 minutes completing our comprehensive questionnaire. Given the pressures described by the respondents, this may reflect their depth of feeling and need to be heard.
The responses provide a valuable insight into the lives of families with disabled children and young people in Sheffield today. Download the report: Executive summary | Full report
Key findings include:
44% of families had more than one family member with a disability. Over a quarter had two or more disabled children. These families often felt that services (particularly short breaks) were insufficient for meeting their needs.
Many families were experiencing high levels of isolation. Only 8% felt fully included in wider Sheffield.
95% of parents said that caring for a disabled child had had a negative impact on their wellbeing. 19% had never had a day or evening off from caring, and 35% said they were “struggling” or “not coping”.
94% of parents also described a negative impact on siblings, many of whom were missing out on parental attention, suffering disrupted sleep, or actively caring for their disabled brother or sister.
53% of the disabled youngsters in the study had sleep problems, and 59% displayed challenging behaviours. These issues had a severe and far-reaching impact on the whole family.
Many families were missing out on vital support because of a lack of information and signposting.
There was a marked improvement in parental satisfaction with both mainstream and special schools, compared to our 2009 survey. However, satisfaction with mainstream schools was still much lower than with specialist settings.
63% of disabled pupils in mainstream schools had suffered bullying “sometimes” or “frequently”.
Parents highlighted capacity isssues in a number of key services accessed by disabled children – particularly Educational Psychology, the Autism Team and Speech and Language Therapy. Three quarters of respondents said their child received “too little” input from these services. Quality ratings varied widely between services.
Respondents described the transition to post-16 education and adult health and social care services as a very stressful time, with too little information and support available for parents.
40% of parents had given up work to cope with their caring responsibilities, and 41% cited a lack of suitable childcare as a reason.
The Forum has made a number of recommendations to Sheffield City Council and Sheffield Clinical Commissioning Group, as well as schools and service providers. These highlight the importance of early intervention services, particularly short breaks and respite, sleep and behaviour support, and better information and support for parents.
Eva Juusola, the Forum’s Development Worker, said: “Parents invested a lot of time in completing our questionnaire. It is essential that we value their input and ensure their feedback is used to improve services.”
“We have shared our findings and recommendations with Sheffield City Councillors and MPs, as well as senior officers and service managers in health, education and social care. We look forward to working with them to take our recommendations forward.”
“At a time of austerity measures and sweeping reforms, it is vital that we all work together to make the most of limited resources, and to ensure that any changes actually produce the intended improvements on the ground.”
Download the report: Executive summary | Full report