Just over a year ago, we wrote to you in the middle of the biggest emergency the Down’s Syndrome Association had ever faced. In 2020, the pandemic hit our community hard. Our helpline was flooded with callers urgently seeking advice and support. All our services were in huge demand.
Lockdown was difficult for everyone, but for people who have Down’s syndrome it was especially so. Face-to-face contact abruptly ceased. Families were forced to decide whether to move their loved ones back home from supported living settings while others had the prospect of being distanced from their relatives, as visiting restrictions made contact impossible. Many people were confused and frightened.
We asked for your help and you responded wonderfully. Last year’s appeal was our most successful ever and, thanks to you, we were able to act quickly, expand our helpline and put programmes in place to help our people through the crisis. This letter highlights just a few of them.
Getting the facts out there
Our first priority was to inform. Understanding of how the virus affects people who have Down’s syndrome grew with each passing week and our role was to make this information accessible. Almost overnight, our website became one of our most precious resources and we developed a unique area to share the latest facts and advice, working alongside our social media channels.
Without face-to-face contact, we quickly had to develop resources that would allow our work to continue:
- Our weekly COVID-19 Update Webinars keep people connected with the latest developments
- We set up Zoom ‘check-ins’ for people who have Down’s syndrome to help combat feelings of isolation
- We rapidly transferred our training programme to be online and our team developed a timetable of over 50 webinars, covering health, education and social care.
Providing specialist advice
There has never been such urgent need for advice. Our Welfare Benefits Advisor has been at full stretch helping families whose financial security has been impacted by the pandemic – especially as many have been shielding, furloughed or facing redundancy. Our Social Care Advocacy Advisor has been helping people understand what support is available from local authorities. Each one of our advisory staff has been frantically busy with no sign of their workload easing.
A lifeline for those isolated by Covid
So many people who have Down’s syndrome had to make drastic changes to the way they live, learn, work and socialise. Many are spending long periods at home, separated from relatives, friends and the support staff they look to for reassurance. To combat feelings of isolation, our weekly Zoom check-ins have become a vibrant online community of people providing each other with peer-to-peer support. Attendance is growing and friendships are developing with many showing an amazing willingness to get involved and help each other.
Keeping healthy and active
Isolation brings boredom and inactivity – a real danger for people who have Down’s syndrome. We quickly set up new initiatives to help counteract this:
Our new DSEngage programme was launched in response to the pandemic to help with overall health and well-being. It’s a weekly programme of online activities such as yoga, dance, workouts, crafts and singing for people of all ages that brings people together and helps them to stay engaged and active.
Our DSActive programme continues to provide opportunities for people who have Down’s syndrome to be healthy and play sport. The programme has flourished online with Zoom meetings and physical activities and through our HealthSwap app, which helps people make positive changes to their diet.
We continue to work closely with the Down Syndrome Medical Interest Group (UK & Ireland) to provide the very latest health information. We monitor arising health issues through calls and emails to our Helpline and work with researchers whose work will make a real difference to the lives of people who have Down’s syndrome.
Getting our voice heard
We were determined that the Down’s syndrome community wasn’t overlooked during the crisis. Since last March we have been actively liaising with the NHS, other public health bodies and the government to raise the profile of the needs of the people who have Down’s syndrome. We have supported and, sometimes challenged, policies that affect us.
At the very heart of our work are people who have Down’s syndrome, a team of invaluable experts by experience. Their insights and priorities guide our work at all levels and we amplify their voices through all our communication channels.
Facing the future
It has certainly been a bumpy year, but with your help, we have got through it. Looking at it positively, it has helped accelerate our preparedness for the new world as we face a future of new challenges and opportunities.
We’re especially excited that our WorkFit programme which was suspended during lockdown is back in business helping people with Down’s syndrome and prospective employers prepare for work. More good news is that we are also resuming some face-to-face contact but the breadth and scope of our online offering will continue to grow and we are launching a new and dramatically improved website in the next few weeks.
We will continue to campaign for change and will be focussing in the year ahead on promoting inclusive education, improving speech and language therapy services and challenging unfair local authority charging practices.
Can you help us?
One heartening aspect of the pandemic is the way in which the Down’s syndrome community has come together. We are so grateful for your loyal support, but today we need you more than ever so that we can continue to provide these vital services over the coming months and years.
You can donate easily online at or text DSAFUTURE to 70085 to donate £10. Texts cost £10 plus one standard rate message and you’ll be opting in to hear more about our work and fundraising via telephone and SMS. If you’d like to give £10 but do not wish to receive marketing communications, text DSAFUTURENOINFO to 70085.
Thank you again for standing with us.
Yours sincerely,
Carol Boys
Chief Executive, Down’s Syndrome Association