Challenging times

by Carol Boys, Chief Executive, Down’s Syndrome Association

Since Tuesday, when we shared the Government’s decision to add adults who have Down’s syndrome to the list of people who are clinically extremely vulnerable, we have been inundated with calls, questions and stories that clearly illustrate the huge impact this decision is having on our community.

We have heard of schools, colleges, employers and service providers excluding people who have Down’s syndrome, even when those effected have made an informed decision to continue to exercise their right to remain in education, working or attending a day service.

The advice for people on the clinically extremely vulnerable list as we go into a national lockdown in England may not be called ‘shielding’ anymore but it is almost as severe as shielding was in the spring. The fact that the guidance is advisory rather than mandatory also seems to have been lost in translation. There is no clarity about how the ‘guidance’ should be implemented, decisions are being made inconsistently and, as we predicted, people are being treated unfairly, based on individual interpretations.

We are seeking clarity on how the advice in England can be interpreted without contravening people’s Human Rights. We are also in discussion with Government in Wales and Northern Ireland to find out what being on the list of people who are clinically extremely vulnerable means to adults who have Down’s syndrome in the nations.

We know that the situation for all of us, whether we are in temporary full national lockdown, under local restrictions or transitioning between the two, is extremely difficult.

However, please be assured that the Down’s Syndrome Association continues to advocate strongly for our members with Government, nationally and locally, education providers, social care providers, employers and the medical profession, and that we will not let them be forgotten.

Information and resources

Join us next week for two free webinars:

13 November, 11.00 am to 12.00 noon | What do we know about the risks of Covid-19 for children and adults who have Down’s syndrome?
This webinar is now full, but a recording of the session will be available on our website after the event.

A webinar with André Strydom, Professor in Intellectual Disabilities, King’s College London, and Professor Monica Lakhanpaul, UCL Great Ormond Street Institute of Child Health.

This webinar will include a presentation about how to keep people healthy, symptoms experienced by people who have Down’s syndrome and health profiles that may be associated with increased risk, with time for discussion and questions.

Book your place to join André and Monica through our shop here.

13 November, 1.00 pm to 2.00 pm | DSA update on Covid-19 and people who have Down’s syndrome

The DSA will provide an update on key issues for people who have Down’s syndrome, their parents, carers and supporters.

Book your place through our shop for an update from our team.

Staying safe

This easy read reflects the updated situation and explains what people who have Down’s syndrome can do to stay safe.

Download a copy here.



Staying well and healthy

This easy read will help people who have Down’s syndrome think about what they can do to look after themselves.

You can download a copy of this easy read here.



Supporting me to make a decision: Quick Guide

You can use this leaflet to help you and your supporter think about things
and make decisions.

You can download a copy of this easy read here.


Emotional well-being resources

This set of accessible resources are free to download and are there to support children and adults who have Down’s syndrome with their well-being.

Find out more about each resource and how you can access them here.