LLR Knowing Me – Privacy Notice

Our commitment to your privacy

LLR Knowing Me respects your privacy and is committed to protecting the personal information of children, young people, parents, carers and professionals who use the service.

This Privacy Notice explains what information may be used when completing the LLR Knowing Me Neurodevelopmental Profiling Tool, why it is used, how it is protected, who may have access to it and the rights you have in relation to that information.

We want this information to be clear and easy to understand. If you have any questions or need this information in another format, please contact us at info@llrknowingme.org.uk.

1. What is LLR Knowing Me?

LLR Knowing Me is a needs-led neurodevelopmental profiling tool for children and young people across Leicester, Leicestershire and Rutland.

It is designed to help children and young people, their parent/carers and the professionals supporting them develop a shared understanding of:

• the child or young person’s strengths;
• areas where they may experience differences or difficulties;
• areas where additional support may be helpful;
• adjustments and strategies that could support them at school, at home and in the community; and
• possible next steps or further support.

The tool brings together different perspectives, including those of the child or young person, their parent/carer and their school or setting.

The information is used to create a needs-led summary profile, which can support conversations, action planning and the Assess, Plan, Do, Review process.

LLR Knowing Me is an early identification and support tool. It is not a diagnostic assessment, does not provide a diagnosis and does not replace existing health, education, safeguarding or diagnostic pathways.

2. Who is responsible for your information?

Under UK data protection law, an organisation that decides why and how personal information is used is known as a data controller.

For LLR Knowing Me, the data controller is:

SDSA, Alliance House, 6 Bishop Street, Leicester, LE1 6AF.

The school, setting, health professional or other organisation completing LLR Knowing Me with a child or young person may also have its own responsibilities for information it holds. Its own privacy notice will explain how it manages that information.

3. What information may be used?

LLR Knowing Me is designed to explore a child or young person’s strengths, differences and areas of need across a number of neurodevelopmental themes.

Information considered during the profiling process may include:

• information about strengths and areas of need;
• communication preferences;
• social preferences and interactions;
• learning and learning style;
• organising and planning skills;
• activity, attention and impulse control;
• sensory preferences;
• motor skills;
• thinking style;
• emotional wellbeing and mental health;
• general health and independence;
• the child or young person’s own views;
• parent/carer views;
• school or setting views; and
• agreed support, reasonable adjustments, strategies or next steps.

Some of this information may be considered health information or other special-category personal data under UK data protection law and therefore requires additional protection.

Only information that is relevant to understanding and supporting the child or young person should be entered or discussed.

4. Where does the information come from?

The LLR Knowing Me profile is intended to be completed collaboratively.

Information may therefore come from:

• the child or young person;
• their parent or carer;
• their school, college, early years setting or other education setting; and
• where appropriate, professionals who know and support the child or young person.

The aim is to bring these different perspectives together to support a person-centred conversation about needs and support.

5. Why do we use this information?

Information is used to help:

• build a shared understanding of the child or young person;
• identify strengths, differences and areas of need;
• identify where reasonable adjustments or additional support may be helpful;
• support early intervention without waiting for a formal diagnosis;
• support conversations between the child or young person, family and professionals;
• inform an action plan;
• identify relevant resources, services and support;
• support the Assess, Plan, Do, Review process; and
• where appropriate, provide supporting information when considering onward referrals or other support pathways.

Information entered into LLR Knowing Me must not be used to make a diagnosis.

6. Our lawful basis for using personal information

Data protection law requires us to have a lawful basis for using personal information.

Where a Data Protection Act 2018 Schedule 1 condition is also required, this will be documented by the responsible organisation.

The lawful basis should be confirmed through the LLR Knowing Me Data Protection Impact Assessment and information governance process before this notice is published.

7. Do you need consent to use LLR Knowing Me?

Children, young people and families should understand what LLR Knowing Me is, why it is being suggested and what will happen with the information discussed.

Participation should be person-centred and the child or young person should be involved in a way that is appropriate to their age, communication preferences and understanding.

Where consent is required for a particular activity, this will be clearly explained and requested separately.

8. Is information stored by the LLR Knowing Me website?

The LLR Knowing Me website does not store the information or data entered into the profiling tool in a separate database.

The information completed through the tool is contained within a unique URL link generated for the child or young person’s needs-led profile. This link can only be accessed through the LLR Knowing Me tool by a trained professional who has an authorised login.

The link may be shared with the child or young person and their parent/carer where appropriate. They should keep the link secure and only share it with people they choose to involve in supporting the child or young person.

LLR Knowing Me does not use the information entered into the tool for marketing or advertising purposes.

9. The needs-led summary profile

When the profiling process is completed, LLR Knowing Me produces a needs-led summary profile which brings together the areas identified through the conversation.

The profile may be used to support:

• discussion with the child or young person;
• discussion with their parent/carer;
• reasonable adjustments and support in school or other settings;
• action planning;
• review meetings; and
• onward conversations with relevant professionals or services where appropriate.

Once a profile has been downloaded, saved or shared outside the LLR Knowing Me website, the organisation or individual holding that copy is responsible for keeping it secure and using it appropriately in accordance with their own data protection responsibilities.

Profiles should only be shared where there is an appropriate reason to do so and with people who need the information to support the child or young person.

10. Who can see the information?

During the profiling process, information should only be available to people involved in completing the profile and supporting the child or young person.

This may include:

• the child or young person;
• their parent/carer;
• relevant school or setting staff;
• the trained professional supporting completion of the profile; and
• other relevant professionals where there is an appropriate reason for the information to be shared.

11. Sharing information with other services

A needs-led profile may help identify other services, resources or pathways that could support a child or young person.

Where appropriate, information from the profile may form part of conversations with other education, health, local authority or support services.

Using LLR Knowing Me does not automatically make a referral to another service.

Where information needs to be shared with another organisation, the professional supporting the child or young person should explain what information is being shared, why it is being shared and what will happen next, unless there is a lawful reason why this cannot be done.

Normal safeguarding and information-sharing responsibilities continue to apply.

12. How long is information kept?

Information should only be retained for as long as it is required for the purpose for which it was collected and in accordance with the relevant organisation’s retention arrangements.

Schools, settings or other professionals that retain a copy of a needs-led summary profile will manage that copy according to their own record-retention policies.

13. How do we keep information safe?

Appropriate technical and organisational measures are used to protect information from:

• unauthorised access;
• accidental loss;
• inappropriate disclosure;
• alteration; and
• destruction.

Only the minimum information needed to achieve the purpose of LLR Knowing Me should be processed.

14. Websites, hosting and technical providers

The LLR Knowing Me website is hosted and supported by:

SDSA, Alliance House, 6 Bishop Street, Leicester, LE1 6AF.

15. Cookies and similar technologies

The LLR Knowing Me website may use cookies or similar technologies to enable the website to function.

Where cookies or similar technologies that require consent are used, users will be provided with clear information and appropriate choices.

Further information is available in our Cookie Notice.

16. Automated decision-making

LLR Knowing Me is intended to support human discussion and professional decision-making.

The needs-led profile should not be used as a solely automated decision about a child or young person.

The results of the profiling tool should be considered alongside the views of the child or young person, their family and the professionals who know and support them.

The profile does not determine whether someone has a neurodevelopmental diagnosis or whether they are eligible for a particular health or education service.

17. Your data protection rights

Depending on the circumstances and the lawful basis being relied upon, individuals may have rights over their personal information, including the right to:

• be informed about how their information is used;
• ask for access to their personal information;
• ask for inaccurate information to be corrected;
• ask for information to be erased in certain circumstances;
• ask for the use of information to be restricted in certain circumstances;
• object to the use of information in certain circumstances; and
• raise a concern about how their information has been used.

These rights do not apply in exactly the same way in every situation.

Children have data protection rights in their own right. Whether a child or young person can exercise those rights themselves will depend on their circumstances and their ability to understand the request.

18. Information for children and young people

Your information matters

Knowing Me is a way for you, your family and the people supporting you to talk about what is going well, what you might find difficult and what could make things easier for you.

You can share your views in a way that works for you.

The information you share should only be used to help people understand your needs and think about the support that might help.

Knowing Me does not diagnose you with anything.

You can ask the adult completing Knowing Me with you:

• why they are asking a question;
• what will happen to your answers;
• who will see your profile;
• for something to be explained differently;
• to take a break; or
• how you can see the information held about you.

If you are worried about how your information is being used, you can speak to a trusted adult.

19. Making a complaint

If you have concerns about how your personal information has been handled, please contact us first so that we can try to resolve the issue.

office@sdsa.net

You also have the right to complain to the Information Commissioner’s Office (ICO), the UK’s independent regulator for data protection.

Further information about your data protection rights and how to make a complaint is available from the ICO.

20. Changes to this Privacy Notice

We may update this Privacy Notice if LLR Knowing Me changes, if the way information is processed changes or if relevant legal or regulatory requirements change.

The latest version will always be available on the LLR Knowing Me website.

Contact us

If you have a general question about LLR Knowing Me, please contact: info@llrknowingme.org.uk