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Autumn 2022 Newsletter

Welcome to our Autumn newsletter which is all about you having your say.
Easy-Read version available using this link 

Down Syndrome Act Guidance 

Thanks to widespread public and political support, we now have a Down Syndrome Act!

The Down Syndrome Act requires the Secretary of State to publish statutory guidance about the specific needs of people with Down syndrome which health, social care, education and other local authority services (such as housing) must take into account when commissioning or providing services. Once the guidance is published these authorities are legally required to take the guidance into account when providing certain core services.

Consultation - Have YOUR say  

Thank you to all those who contributed to the government consultation and who also shared their, more detailed, experiences with the NDSPG. We are now working hard to consolidate the data gathered and present it as evidence to the Civil Servants working on the guidance. At NDSPG we believe it is vital that those with Down syndrome, their families, carers, friends and experts working with them, contribute to the guidance in a meaningful way because they understand the frustrations and limitations of current systems and also have many views about how to improve things. They know what works and what doesn't, what is helpful and what is a hindrance, what is beneficial and what is a waste of time.

So, we are excited to launch phase 2 of our consultation. We are asking people to complete the questionnaires that are relevant to them in the areas of health, education, social care and employment. This time we are collecting more specific, quantitative research which we will analyse and forward to the civil servants. The questionnaires require tick-box answers and are quick and easy to do. When answering the questionnaires you may wish to consider where Down Syndrome specific experience and provision would have been useful. For example, in school did teachers and therapists have training about how people with Down syndrome learn, do health professionals understand the health needs and how they can affect people with Down syndrome. 

You can access our consultation using this link

We appreciate that not most will not have experience across all of the topics, so we have created individual questionnaires split into three different respondent types:

To be completed by Parent / carer

To be completed by individual with Down syndrome, with assistance where necessary
To be completed by ALL professionals who help people with Down syndrome

In addition to our consultation, we recommend people complete the Government’s own Call for Evidence


Research Assistant Required

We are looking for postgraduate students to support us as Research Assistants working on the analysis of qualitative data. Please email to discuss terms. Please do share this great opportunity to work with a dynamic team as we analyse the data from our consultations and present to the Government as part of their call for evidence for the Down Syndrome Act.


Advisory Group

The Advisory Group, made up of adults with Down syndrome from around the UK, has met many times. The monthly online meetings are led by our Founding Officers Bethany, George, Heidi, James and Fionn, and the information they collect will be an integral part of the consultation process. All members of the group really enjoyed the opportunity to learn about the Down Syndrome Act and share their stories. They feel listened to, and are excited to continue to share their experiences and shape practice. They've asked our Founding Officers with Down syndrome to continue to facilitate for another 3 monthly meetings which we thought was a great idea!. Not only that, but we're re-opening membership, all adults with Down syndrome are welcome, and can attend with or without a supporter.

For more information and to register contact the project leader Fionn at and please spread the word by sharing this flyer. Watch this very informative, short video where Fionn explains more about the group.

Westminster meeting with Civil Servants 

Our Advisory Group were delighted to host over 25 adults with Down syndrome at our meeting with Civil Servants working on the guidance for the Down Syndrome Act. Participants shared their experiences in education, employment, social care and health. They explained what has worked well and what has been difficult, they also shared their hope and aspirations for the future. The Civil Servants left with a better understanding of the issues and how they affect people with Down syndrome on a daily basis. Thank you to everyone who came, the evidence you gave is invaluable. If you are interested in participating in groups like this please do email us at 

Support Groups

We know that between us we have provided thousands of hours of support, therapies, activities and care to families who would have otherwise received no Down syndrome specific assistance. Together we also provide thousands of hours teaching to health and education professionals who receive little or no training in Down syndrome. We are a mighty community and we know that collaborative working drawing on the richness of experience, knowledge and understanding within support groups and their members will be key to the future success of the aims of the Down Syndrome Act.

We will be hosting a webinar for Support Group leaders on the 4th October. Invitations to support group leaders have been sent, if you run a support group but did not receive an invitation please email for registration details. The webinar will include an update on the Down Syndrome Act and information about the consultation process and how to make sure voices from our community are heard.

Support group logos

We are very grateful to those who have made donations already and, in response to many enquires about supporting our work, we have opened a GO Fund Me page
The funding will allow 
National Down Syndrome Policy Group to pay for research, buy in consulting expertise and support the administration of both the group and the All Party Parliamentary Group for Down Syndrome. The Founding Officers have provided and will continue to provide their time and expertise free of charge to the National Down Syndrome Policy Group.

Keep in touch

Join our mailing list for up-to-date news and progress about the Bill.
Please lend your voice to our campaign by supporting us on our social media platforms. We would very much appreciate your support:
Follow us, like and retweet on Twitter @NDSPolicyGroup
Follow us, like and share our posts on Facebook
and now you can also follow us on Instagram too @ndspolicygroup

You are most welcome to email us your questions, opinions and anything else at

Warmest wishes,
The National Down Syndrome Policy Group Team 


Group photo of the founding officers of NDSPG
Copyright © 2022 National Down Syndrome Policy Group, All rights reserved.

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