If you have Down syndrome (DS), have a loved one with DS, or work with people in the DS community, we want to hear from you via our simple-to-use online consultation.
In order that we can build up as clear and as inclusive a picture as possible we have started an evidence gathering exercise. Our online platform is here: http://consultation.ndspg.org/
We would like to collect views and opinions on what the Down Syndrome Act should mean for people within and connected to the Down syndrome community. It is up to our community to tell the government about our experiences, our ambitions and the things that work and the things that frustrate and make life harder than it needs to be.
This platform will comprise two online phases - the first will be largely open-ended and seeking views, the second will be more directed across the five key streams of maternity, health, education, employment and social care. The online information will be supplemented by discussions from focus groups. We very much hope that you will take part in each of these stages. We really need to hear about your experiences and also ideas for what you would like to see changed.
Finally, we will be creating a panel of experts across the 5 streams mentioned earlier, with each panel including lived experience experts, practitioners, academics, professional bodies, representatives from appropriate specialist charities/support bodies and delegate from the All-Party Parliamentary Group on Down syndrome. We would like to hear from you if you have the relevant experience to be included in one of these panels.
The information we get from the NDPSG consultation will help us better understand what works well and the areas that need improving. We will share this information with the senior civil servants who are writing the Guidance that is required by the Down Syndrome Act (2022) which will have far-reaching consequences for those with Down syndrome.
We want to thank all of our supporters who have backed our Down Syndrome Bill campaign whether it has been signing our petition, writing to MPs, sharing our social media posts, attending events and webinars or just bolstering us withencouraging messages.
Please lend your voice to our campaign by supporting us on our social media platforms, we very much appreciate your support, and join our mailing list for up-to-date news:
Twitter @NDSPolicyGroup
www.facebook.com/NDSPG21
@ndspolicygroup
contact@ndspg.org
We cannot emphasise enough the importance of this NDSPG consultation because we will not have the opportunity to provide evidence about life with Down syndrome in such a powerful way again in our lifetimes. This is OUR moment, this is OUR opportunity to make a difference by making sure the guidance is powerful and effective.
Warmest wishes,
The National Down Syndrome Policy Group Team
FAQ
1) Is the NDSPG consulting on behalf of the government?
No. This is our own consultation but we will share the findings with the civil servants working on the Guidance via a formal report that the public will also be able to see.
The government will run its own consultation.
2) If the government is doing their own consultation why should I do this one too?
By doing our own NDSPG consultation we can feed our evidence to the DHSC as a formal report but also make sure that we cover all the areas that matter to you by starting with a broad open stage 1. We will analyse the results for themes and look in particular for areas that have not yet been identified or described as issues or concerns. Maybe no one has highlighted the issues you face before- tell us about it!
We would kindly ask people to complete both the National Down Syndrome Policy Group’s and the DHSC’s consultations to make sure your views are properly recorded.
You can access the Department of Health and Social Care consultation here:
https://www.gov.uk/government/consultations/down-syndrome-act
3) How much time will it take to do the NDSPG consultation?
The NDSPG consultation will be in 3 parts to be carried out at different times;
1) a general and broad request for information where you can share all that is important to you
2) more specific questions based on the information we gather from stage 2 and finally
3) where we ask people to volunteer for focus groups to really explore common issues in greater depth.
The NDSPG consultation will be comprehensive and multi-faceted consultation where we hope to gather an abundance of evidence about living with Down syndrome in all areas of life. You can participate as much as you are able because all information will be processed.
Research of this kind has never been undertaken before with people with Down Syndrome in the UK.
4) How accessible will the consultation be?
Tell us if you need help to fill it in - contact@ndspg.org
We are hoping to capture the views of people with Down syndrome and we understand that there is a broad spectrum of assistance that will be needed in order for people to participate effectively. The NDSPG consultation is for use by all that has been designed to be as user-friendly as possible with videos and simplified language.
We would encourage parents, carers, support groups and professionals to be as creative as possible in sharing the consultation with people with Down syndrome who need assistance. We suggest, for example, using visual prompts, narrowing down open questions and providing specific choices as appropriate. It is incumbent upon all of us to assist those who will need support and to help them have their voice heard. We kindly ask that parents, carers and professionals also complete the NDSPG consultation.
Responses can be recorded in any format such as printed/written, videos, recordings etc although for our convenience in collecting the data, the online form is preferred. In addition our founding officers with Down syndrome are able to offer assistance via online meetings to adults with Down syndrome who would appreciate this support. You can email contact@ndspg.org for more details.
We are thankful to the LD nurses who volunteered at the Advisory Group to assist the adults with DS to submit their thoughts- your help was appreciated! However, please rest assured you don't need to be a specialist to support someone to take part - just begin a conversation and explore what they think about the areas in the consultation.
5) Will my contribution actually make a difference?
YES!!! We have been so impressed with the desire shown by the senior civil servants to effectively capture the voices of people in the Down syndrome community. They want to know about your life, the things that work well and the things that don’t. If we don’t tell them, then the assumption will be that everything is OK and we know from personal and wider experience that this is often not the case. The Guidance, which public authorities will require a very strong and good reason not to follow it, will be written using the evidence provided by our community and professionals. The National Down Syndrome Policy Group has created new opportunities for people with Down syndrome and their families to be heard at the highest level where laws are written and passed. Please do not let this opportunity pass you by but grasp it with both hands and have your say!
6) Can others also contribute to the consultation?
YES! The NDSPG consultation is open to all people which includes the wider family, teachers, social workers, healthcare professionals, volunteers, therapists….the list is endless. We would urge you to circulate the NDSPG consultation around all those who are/have been involved throughout your journey and those who may come into contact with people with Down syndrome in their personal or professional lives. We want a broad response that captures lots of different views from people of all different backgrounds.
Our Thanks to BECG
We are delighted that the leading award-winning communications consultancy firm, BECG, has offered operational support on a no cost basis to the National Down Syndrome Policy Group providing an online platform through which we can collect views and opinions on what the Down Syndrome Act will mean for people across the Down syndrome community.
Unique Opportunity for a Post Graduate Researcher
Are you passionate about data analysis and helping the people with Down syndrome to get their voices’ heard? The NDSPG would like to invite postgraduate students in psychology (and sociology) to support the NDSPG as Research Assistants working on the analysis of the qualitative data from phase 1 consultation results. Some experience with qualitative analysis (especially framework analysis) preferable. Please get in touch to learn more about this amazing opportunity: contact@ndspg.org