A Guide to Facilitating Meetups for Adults Who Have a Sibling with an Intellectual or Developmental Disability

Helen Ries | Becky Rossi | AIDE Canada
This guide provides a recommended process for hosting successful meetups for adults who have siblings with an intellectual or developmental disability. Much of the content has been geared to the needs of facilitators who are new to hosting sibling meetups. In most cases, the meetup facilitators referring to this guide will be siblings themselves.


forAdultsWhoHaveaSibling with an Intellectual or DevelopmentalDisability


Appendix A: Sample Agenda

The following is a sample agenda for a typical two-hour sibling meetup:










Facilitated Sharing

Social Time



Introduce facilitator(s)

Invite participants to introduce themselves to “break the ice”

Their first name

Their sibling’s first name

What brought them here today

Welcome participants and thank them for coming

Outline the ‘agreement’

Set the intention for the meetup:

To share experiences and resources

To build our own sibling network

What else?

Share what connecting with other siblings has meant to you in your own life

Work through the questions (see Appendix B)

Allow the discussion to flow into a casual conversation with side conversations

Thank participants for coming

If relevant, schedule another meetup date, time and location

Either ask participants to fill in the feedback form

(Appendix C) at the event or let them know they will be emailed it shortly

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Appendix B: Facilitated Discussion Topics and Questions

Having a topic for each meetup (e.g., future planning, mental health) along with a set of

prepared questions helps to keep the conversations focused, positive and flowing.

One format that tends to work well is to have each question written up on its own sheet (e.g., index cards in a deck of cards style). You can then ask each sibling to draw one card to respond to. Once they have spoken, other siblings around the table can offer their experiences and thoughts on the particular question drawn.

Below are some recommended questions that you can use to facilitate a meetup or series of meetups.

Life as a Sibling (Part 1)

1.What has been the most recent significant positive change that has happened in your life as a sibling?

2.What has been the most effective way you have found to advocate for your sibling?

3.Who has been the most helpful to you as a sibling and why?

4.What have you done for your sibling that you are most proud of and why?

5.Who has been the best champion for your sibling and why?

6.What have you done that has helped your sibling the most?

7.What has been the best support for you as a sibling?

8.What is the best support resource you have found for your sibling?

9.What can you do better for your sibling than your parents can?

10.Tell us about a time when you were down about your sibling or family and what helped you to bounce back.

11.How has having a sibling with a disability affected your life?

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Life as a Sibling (Part 2)

1.What is the one thing that has improved your sibling’s wellbeing the most?

2.Can you describe a time where you felt jealousy or another emotion towards your sibling?

3.Did you ever feel ignored or neglected as a child and do you feel like this is still the case?

4.How has your sibling had an impact on your social or romantic life?

5.Has your sibling impacted you personally and, if so, how?

6.Has your sibling impacted you professionally and, if so, how?

7.How has your sibling impacted your worldviews?

8.How do you explain your sibling’s diagnosis to other people?

9.What do you do when you hear discrimination against people with a disability or your sibling or family?

10.How does culture play a role in your experience as a sibling?

Communicating with your Parents

1.How do you see the future and the role you will play in supporting your sibling?

2.Can you describe a time where you may have felt resentment toward your parents growing up?

3.What did your parents do (or do now) that was effective in supporting you?

4.What do your parents do (or do now) that was not so effective in supporting you?

5.What do you wish most for your sibling and your parents at this point in time?

6.When do you get most frustrated with your parents as it relates to your sibling?

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7.How do you share difficult feelings with your parents?

8.How can you get a difficult conversation started with your parents about your sibling?

9.What about your sibling do you talk to your parents about?

10.How do you get your parents to listen to your concerns about your sibling?

Planning for the Future and Your Sibling’s Care

1.When you think about the future how do you feel?

2.What kind of emotions come up when you think about your sibling in the context of the future care?

3.What planning has your family done for the future? Why do you think that is?

4.How would you like to be involved in helping your family develop plans for the future?

5.What will happen if you don’t take the step towards planning for an upcoming change or transition?

6.What will it look like when you have had a successful first discussion with your family or parents on future planning? And how will that feel?

7.Who can support you to open the discussion with your parents and family on future planning? What does that support look like?

8.What steps can you take to prepare for a discussion about the future?

9.How can you prepare for a reaction you are not hoping for or do not expect?

10.How can you show yourself compassion for the challenge of future-planning conversations before and after the discussion has been opened?

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Appendix C: Sample Evaluation

The following is an evaluation form that you can give to participants to complete at the

end of the meeting. Collecting feedback is a great way to refine and improve meetups so

they continue to be relevant over the long term. Feedback is not to be taken personally by the lead facilitators.

If needed, you can adjust the evaluation form to suit the context of your meetup.

Sibling Meetup Evaluation Form:

1. Overall how satisfied were you with this event?

Very satisfied



Very dissatisfied

2. How likely are you to continue to connect with other siblings?

Very likely





Very unlikely

3. Did the facilitator(s):


















































Clearly explain the purpose of the event?

Sustain the interest and participation of the group?

Run a smooth and organized event?

4. How could the meetup have been more useful or relevant? (Please describe)

5. Please share any other comments you have about the meetup.

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Appendix D:Promotions

Below is a sample poster you can use or modify for your sibling meetup. Of course you are also welcome to create your own. Turn it into a .png or .jpeg so it can be shared online.


Join us for a social and relaxed evening of connecting with other adult siblings who have a brother or sister with an intellectual or developmental disability



TICKET PRICE: $X (includes one drink and appetizers).

RSVP ON EVENTBRITE Link to sign up on Eventbrite

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Download Appendices


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