Election 2019 – some key issues for people with Down’s syndrome

You may like to ask your MP, and those who canvas your vote in the street or at your door, how their party will tackle these issues if they form the next government.

Social Care for adults

In 2018 we asked our members to tell us about their experiences of social care support. You can read about what we found here.

Our Chief Executive, Carol Boys, commented on the findings as follows:

“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.”  

What you could ask…

How will the next Government improve social care support and ensure a better quality of life for adults with Down’s syndrome?


Education for children and young people

Parliament’s Education Committee published the report of its inquiry into special educational needs and disabilities (SEND) in October 2019. They have concluded that this generation is being let down by the current system, and that parents are facing a “titanic struggle” to find the right help and support. You can read about our contribution to the report here.

Our Chief Executive, Carol Boys, commented on the Education Committee’s findings as follows:

“This damning report clearly shows that a generation is being let down by the current system. It shows a lack of accountability, a lack of resources, a lack of joined-up working and a lack of funding. We welcome the fact that the government has commissioned its own review of the system and hope that these reports are more than just ‘reports’, and lead to long-term improvements for families, children, and young people with special educational needs.”

What you could ask…

How will the next Government improve education provision for children and young people with Down’s syndrome?


Healthcare for adults

During 2018/19 there were a number of distressing cases of preventable deaths of adults with Down’s syndrome. In Spring 2019 we asked our members to let us know about their experiences of healthcare for adults.  The feedback we have received contains a concerning number of reports describing poor experiences of healthcare including:

  • Diagnostic overshadowing, assumptions about people with Down’s syndrome coping with aftercare following surgery and disability discrimination
  • Failures in the recognition and management of pain
  • Lack of reasonable adjustments in healthcare

We are gravely concerned that, in the twenty-first century some individuals who have Down’s syndrome are being denied good quality health care.

People with Down’s syndrome must have equitable and timely healthcare.

What you could ask…

How will the next Government improve health care for people with Down’s syndrome?


You can find contact details for your MP here.

For more information about voting and registering to vote, click here.