About Down's Syndrome : It’s My Life

This summer we asked our members to tell us about their experiences of social care support.

Thank you to everyone who completed the survey.

We wanted to find out about assessment, planning, care support and the review process.

We have now published the key findings in a report which you can download here. Here are the key findings:

  • 43% of carers said their adult child was in need of a Social Care Assessment
  • 33% of carers were not satisfied with the resulting needs assessment record
  • 27% were unhappy with the quality of support provided around needs assessment, with some reporting social workers lacking the expertise and professionalism and knowledge (even basic) to provide a good service
  • 50% of carers said the assessment was not being reviewed annually
  • 92% of people did not get an initial 6-week review as recommended in the Care Act guidance
  • 61% of carers reported their adult son/daughter received no hours of support for education
  • 42% of carers were not satisfied with the level of support for evening and weekend activities
  • 66% said they received no support for accessing employment
  • 33% of carers are concerned about inadequate support for emotional and mental health issues

“We have become increasingly concerned at the level of social care support for adults with Down’s syndrome. Our survey found that care and support is often poor in quality and quantity and seriously lacks attention to health conditions, which has sadly resulted in some deaths. Some local authorities lack understanding of an individual’s rights. Others display a complete and blatant disregard for people’s human rights, with some practices that are even unlawful…We want to see adequate care and support so that the health of our members does not deteriorate. We feel local authorities need to be assessed for their own fitness as providers because at present, assessments are frequently inefficient, inaccurate and wasteful of both time and funding.” – Carol Boys, Chief Executive

We will be using this report to inform MPs and government departments when the forthcoming Green Paper on Social Care is released for consultation.

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