Thanks to widespread public and political support, we now have a Down Syndrome Act! Thankfully the Foundation and it’s trustees worked together with the National Down Syndrome Policy Group (NDSPG) to have a voice and be involved in the passing of the  Act. We are here with an important update on where we are in the progress towards it’s implementation.

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.


The 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.


But they need to hear from you!

We are pleased to announce the launch of the second phase in the NDSPG’s online consultation.  In phase 2 they move into a more quantitative approach, asking specific questions.


They appreciate that not all of you will have experience across all of the topics, so they 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 professionals who help people with Down syndrome


The NDSPG appreciate that some of you may feel daunted by the task of completing these surveys.  An alternative might be to hold face to face meetings with your local group/peers to get feedback in person.  Please get in touch if you would like to do this but need support in how to facilitate.

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


Research Assistant Required

The NDSPG are also looking for postgraduate students to support 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 they analyse the data from our consultations and present to the Government as part of their call for evidence for the Down Syndrome Act.