Welcome to our consultation page.
On this website you can find out more about who the National Down Syndrome Policy Group are, what the new Down Syndrome Act is and how you can get involved in what we as a community would like to see come out of this new legislation. You can access the consultation here.
On this website you can find out more about:
- who the National Down Syndrome Policy Group are
- what the new Down Syndrome Act is
- how you can get involved and have your say
You can find the consultation here.
If you have Down syndrome and need help to complete this form, please let us know and we will do our best to help you. Click Here
Some words in bold are explained in a word list at the end of this page.
Who are the NDSPG?
The NDSPG supports people with Down syndrome to have a say in policies that affect their lives.
The NDSPG is made up of people from charities and support groups across the UK, that help people with Down syndrome and their families.
The NDSPG wants to make sure people with Down syndrome can tell the government and decision makers what life is like for them and what support is needed to live their lives, the way they want.
You can find out more about us here.
What is the Down Syndrome Act and what does it do?
The Down Syndrome Act started as a Private Member’s Bill and was taken to Parliament by Dr Liam Fox MP.
The Bill was given Government support and has now been passed into law. You can read the Act here.
The Act asks government ministers to provide guidance on how services should meet the needs of people with Down syndrome in four main areas:
- Social Care
Employment for people with Down syndrome is not included in the Act, but we still want you to tell us about your experiences with getting and keeping jobs.
Things you tell us about employment will be an important part of the guidance for the Act.
What is this consultation about?
Now that The Down Syndrome Act is law, the government must talk to the people about what should be in the guidance that it will be putting out.
Although everyone at the NDSPG is from the Down Syndrome community, we know that it is very important to ask others to share their ideas and experiences.
During the government consultation we want to make sure people from the whole community are included and have a say on what should be in the new guidance.
The consultation will be in three stages.
The first stage is for you to tell us about the issues that matter to you. This is when we start collecting the information you share in our consultation so we can tell the government and make sure that your ideas are listened to when the guidance is written.
In the second stage, we will ask you to give more information about the issues that came up in the first stage and find out which are the most important to you.
Then we can understand what the important issues are and how the government can meet them.
The final stage will be in the autumn when we will organise workshops, at which people can share more information to help us better understand the important issues.
The issues and ideas you share with us in the consultation and workshops will be written in a report and given to the Government to help make sure the guidance on The Down Syndrome Act is right.
We think this is the best way for us to listen to what the people in the Down syndrome community want, to help shape the guidance.
Please let us know if you’d like us to do things differently or if you’d like to help us do more.
How can you get involved?
- Take part in the consultation here
- Encourage others to do the same, maybe through your local group or on social media.
- Volunteer for the NDSPG, we are looking for more people to help change government policy to improve the lives of people with Down syndrome.
- The NDSPG has an advisory group for adults with Down syndrome to help shape everything we do – please get in touch if you would like to join.
- If you’d like to ask us anything help us or have any ideas about what we’re trying to do, get in touch.
If you’d like to ask us anything, or to help us or have any ideas about what we are trying to do, please get in touch.
Consultation: This is when a group of people are asked to answer questions and share ideas about something.
Government: The Government looks after laws about things like health, education, the economy, culture, transport and the environment.
Government consultation: is when the government asks a group of people to answer questions and share ideas about something.
Government minister: This is an MP that leads a ministry. A ministry is a department within government like ‘social care’ or ‘transport’.
Government policy: These are the rules that the Government has given on how things should be done or a set of laws that must be followed.
Government support: This means that the Government agrees with something that is being planned or talked about in Parliament.
Guidance: This is information on how things should be done.
MPs: Member of Parliament.
Parliament: This is when the MPs and Lords meet to talk about new laws or check on the work that the government is doing.
Policy: A policy is the rules on how things should be done or a set of laws that must be followed.
Private Member’s Bill: This is a plan to change the law by an MP or a Lord.
Workshops: These are meetings where people are invited to share their ideas and could be in person or on zoom.