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

Help us spread the word

In January 2019 we sent a letter to MPs about the concerns that were raised by the findings of the It’s My Life survey.

You can help us to influence MPs, and the wider debate about social care, by writing to your MP to tell them your story and your concerns.

Put down on paper, in a document or in an email what you want to say about the issue, explain why you are worried or the difficult situation you are currently in.

You can tell your MP that we’ve already written to them, suggest that your MP reads the report or contacts us to find out more about our work and our campaign to raise the issue of social care for people with Down’s syndrome.

If you write before Down’s Syndrome Awareness Week 2019 (18-24 March 2019) or World Down Syndrome Day (21 March 2019) why not ask them to show their support and to get involved…suggest they wear #LotsOfSocks, give our Helpline a call, share one of our WorkFit or DSActive case studies from their constituency, reach out to their local support group or sign up to Challenge 21.

Things to remember when you write:

  • If you’re writing a letter, address it to the MP’s name followed by ‘MP’. Eg Joe Public MP
  • You should then start ‘Dear Mr Public’.
  • Keep it brief, firm and polite and focus on your personal experience.
  • Ask your MP for their opinion on the issue – you have a right to know what they think!
  • Ask your MP to contact the Minister for Health and Social Care to pass on your concerns.
  • A handwritten letter always has more of an impact.
  • You’ll find your MP’s contact details (Westminster office, constituency office and email address) on the www.parliament.uk website.

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