Neurodivergence code of practice development survey: privacy notice

The statutory code of practice on the delivery of autism services came into effect on 1 September 2021. We continue our work with local authorities, local health boards and stakeholders to ensure that the code supports the development and implementation of consistent and sustainable autism services for children, young people and adults. However, feedback during the consultation for the code indicated there was a need to widen the code to include other neurodevelopmental conditions which are often co-occurring with autism.

Welsh Government is gathering information through an online survey to build on the current code of practice for autism services and develop a neurodivergence code of practice. The questions have been designed to help identify areas which need to be addressed and developed, to ensure that the new neurodivergence code of practice meets the needs of everyone.

Upon receipt of the information from the survey, the Welsh Government becomes the data controller for it. The information collected from the survey will be for internal Welsh Government use only and will not be published.

Your participation in this research is completely voluntary. However your views and experiences are important in order to help inform Welsh Government thinking when developing the neurodivergence code of practice, which will be subject to public consultation later this year.

Please contact us at neurodiversity@gov.wales.

Personal data is defined under the UK General Data Protection Regulation (UK GDPR) as "any information relating to an identifiable person who can be directly or indirectly identified by reference to an identifier".

The survey is being promoted by email and via various communication channels. This includes through stakeholder engagement groups and by those responsible for services that you may have accessed in the past. The email contains a link to the online survey. There will be the option to respond by email should you prefer. Only the Welsh Government has access to your survey responses.

Your participation is voluntary. The survey will not ask you to provide your name or other personal information and we will not capture your email or IP address as part of completing the survey. If you choose to provide additional personal data in your responses to open questions, we will try not to identify you from, or link your identity to, the responses you provide and this personal information will be removed from the anonymised data.

The survey will include demographic information such as ethnicity, gender identity or grade. It may be possible to identify some individuals due to unique combinations of characteristics. We only collect this information to enable us to contextualise the comments received to ensure that we understand them in terms of their needs. This will also let us know how widespread our contact has been, for example, have we heard the views of individuals with ND from an ethnic minority? Have we heard the views of individuals with ND from the LGBTQ+ community? However, we do not intend to publish this information.

If you raise a query or complaint and provide personal data requesting a response, the Welsh Government will respond and subsequently delete all correspondence from our systems but will record the content of the query or complaint.

If you wish to participate in this survey by sending an email and sharing personal information to receive a response, the Welsh Government will retain your response after replying, and subsequently remove the emails with personal data from our records.

The lawful basis for processing information in this data collection exercise is our public task. That is, exercising our official authority to undertake the core role and functions of the Welsh Government.

Participation is completely voluntary. Stakeholder engagement surveys such as this are important for the Welsh Government to collect information and evidence about its ability to deliver government priorities. The information collected in this survey will be used to identify areas which need to be addressed and developed, to ensure that the new neurodivergence code of practice meets the needs of everyone.

Personal data provided to Welsh Government is held on secure servers. Welsh Government will use a survey software programme called SmartSurvey for the survey. We have ensured that SmartSurvey is UK GDPR compliant and meets our expectations in terms of the security of any data collected via the software.

The information gathered will be to inform the development of the new neurodivergence code of practice and will not include any information that could be used to identify individual participants. This information will not be published.

The Welsh Government will not retain any personal data in relation to this survey.

If you provided any personal data in any open text responses this will be deleted before your response will be saved with the other anonymised data.

If you wish to participate in this survey by sending an email and sharing personal information to receive a response, the Welsh Government will retain your response after replying, and subsequently remove the emails with personal data from our records.

In our remit as the data controller, the Welsh Government uses the information received in the survey:

• for statistical and research purposes
• to inform, influence and develop neurodivergence code of practice policy

Upon receipt of the information from the survey, the Welsh Government becomes the data controller for it. The information collected from the survey will be for internal Welsh Government use only and will not be published. No personal data will be retained or shared.

The anonymised responses will be used to develop the neurodivergence code of practice, which will be consulted on later in the year.

Under UK GDPR, you have the following rights in relation to the personal information you provide as part of this research project, specifically you have the right:

• to access a copy of your own data
• for us to rectify inaccuracies in that data
• to object to or restrict processing (in certain circumstances)
• for your data to be "erased" (in certain circumstances)
• to lodge a complaint with the Information Commissioner’s Office (ICO) who is our independent regulator for data protection

Contact details for the Information Commissioner’s Office:

Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Phone: 0303 123 1113

Website: www.ico.gov.uk

If you have any further questions about how the data provided as part of this study will be used by the Welsh Government, or wish to exercise your rights using the UK General Data Protection Regulation, please contact us at neurodiversity@gov.wales.

Contact details for the Welsh Government Data Protection Officer: 

Welsh Government
Cathays Park
Cardiff
CF10 3NQ

Email: dataprotectionofficer@gov.wales