Parent/caregiver survey on challenges, crisis and support needs of autistic and/or disabled children and young people in Ireland

What is this survey about?

We are doing a research project as part of the Autism Innovation Strategy 2024 to learn more about the support needs of autistic and/or disabled children and young people in Ireland, and the kinds of challenges they and their families sometimes face. The goal of this research is to help improve support services for children, young people and families.

We also want to explore circumstances when things get really hard for these families or feel like they’ve reached “crisis” point. We are interested in what supports children, young people and families need, and which services work well – or do not – during such times.

Who should complete this survey?

Parents, carers or guardians of children and young people (up to age 23) who are autistic and/or disabled (e.g. have an intellectual disability, or a mental, emotional or psychological condition) who have experienced or have been close to experiencing a crisis related to caring for their child or young person.

If this is you, you can take the survey here.

Support services

Talking or thinking about sensitive topics can sometimes bring up strong feelings or memories. If you feel upset or need to talk to someone, support is available:

Samaritans
Freephone: 116 123 (24-hour Helpline)
Email: jo@samaritans.ie Website: https://www.samaritans.org/ireland/

Aware
Freephone: 1800 80 48 48 (7 days a week from 10am to 10pm)
Email: supportmail@aware.ie Website: https://www.aware.ie/

Turn2Me
Contact: https://turn2me.ie/contact/

Pieta House
Freephone: 1800 247 247 (24-hour Helpline) Text: 51444 (standard message rates apply)
Website: https://www.pieta.ie/

Information about the protection of your data

Survey data

1. We will only seek to collect and analyse the data necessary to answer our research objectives.

2. The National Disability Authority has a statutory remit to 'undertake, commission or collaborate in research projects and activities on issues relating to disability and to assist in the development of statistical information appropriate for the planning, delivery and monitoring of programmes and services for research disabilities' (see NDA Act 1999 Part 2 Section 8). This research is in accordance with the legitimate interests of the NDA and Article 6 (a and e) of the General Data Protection Regulation 2016 provides the legal basis for processing personal data. Legal authority to process personal data is also claimed under Article 9 of the General Data Protection Regulation 2016.

3. You have a right to object to automated processing including profiling. This project does not engage in automated processing or profiling.

4. Your personal data will not be used for any other purpose.

Methods to protect your data

1. This survey is anonymous. However, we will ensure that any of our published findings or quotes do not include such detail as to possibly identify anyone.

2. Access to participants’ survey data will be restricted to the research team who have all received training in data protection.

3. Although robust data security measures are in place, data breaches and or theft are possible, however, the likelihood of this is considered to be low. The consequence of a data breach could be a loss of privacy to the individual and a loss of reputational damage to the NDA and the Department of Children, Disability and Equality.

4. You have a right to lodge a complaint with the Data Protection Commissioner. The offices of the Data Protection Commissioner are at 21 Fitzwilliam Square South, Dublin 2.

5. Your data will not be transferred to a country outside of the EU or an international organisation.

Further questions?

Please do not hesitate to contact us by email or write to us. Our contact details are provided below.