We warmly welcome you to join us for:

End of Life Directives

Advance Directives

For many years people with Down syndrome had limited input into their own health care decisions. Today, people with Down syndrome continue to take a greater role in their own health and health care decisions. One area of health care that this includes is end-of-life decisions. When thinking about this topic, it is important to consider issues of ableism, dignity of risk, decision-making including supported decision-making, guardianship, assent, and how to discuss advance directives with people with Down syndrome. In this presentation, Brian Chicoine, MD, and Mary Stephens, MD, will discuss these considerations and share lessons learned from caring for adults with Down syndrome.

SPEAKER - Dr Brian Chicoine MD

Brian Chicoine, MD is the Medical Director of the Adult Down Syndrome Center in Park Ridge, IL. He is on the faculty of Family Medicine at Advocate Lutheran General Hospital. Dr. Chicoine is co-founder of the Adult Down Syndrome Center which has served and documented the health and psychosocial needs of over 6000 adolescents and adults with Down syndrome since its inception in 1992.

Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine and completed his Family Medicine residency at Lutheran General Hospital. He co-authored two books Mental Wellness of Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome published by Woodbine House Press. Dr. Chicoine has provided medical care for adults with intellectual disabilities for over 30 years and has presented and written extensively on caring for adults with Down syndrome.

SPEAKER - Dr Mary Stephens MD

Dr. Mary Stephens is an Associate Professor in Family and Community Medicine at Jefferson. She is a family physician with 25+ years of experience in patient care and teaching. In 2015 she co-founded the Adult Down syndrome program at Christiana Care in Wilmington, DE and continues to serve as the clinical leader. In 2018, she returned to Jefferson to help launch the Jefferson Continuing Care Program (JCCP), a new primary care practice for teens and adults with complex childhood onset conditions. She currently serves as co-Director with Karin Roseman, LCSW and the program has become the Jefferson FAB Center for Complex Care (For Adolescents and Beyond).

Dr. Stephens is actively involved in medical student and residency education at Jefferson and is also on the Board of Directors of the Down Syndrome Medical Interest Group (DSMIG) and a member of the volunteer committee for the Global Down Syndrome Foundation's adult healthcare guidelines.

The mother of a 13-year-old with Down syndrome, she is a parent member of the Down Syndrome Association of Delaware (DSA of DE) and has been actively involved with Special Olympics since 2014, as a parent to an athlete and a unified partner and both a medical and Class A volunteer in PA and DE. As her favorite sweatshirt says, she's all about coffee, dogs, and books. She also loves spending time with her husband Tom and her children. Skee ball is her favorite sport!

DATE: Wednesday 14th August, 2024

TIME: 9:00am - 10:30am (AEST)

FORMAT: Online

COST: Free

Membership is essential to attend this event.

Membership is FREE. Sign up here: Become a Member – Down Syndrome NSW

We have lots of member only events throughout the year as well as discounts to our conferences, workshops and training and other great member benefits soon to be announced!

This session will be recorded.

Slides and resources from this session will be shared following the presentation.

Content Warning: Please note this facilitated workshop will discuss the topic of Down syndrome. Attendees are advised that statistics, life experiences and challenges associated with living with Down syndrome may be discussed, which may be triggering or confronting for some participants. We encourage all attendees to priorities self care and note that participants are free to leave the event at any time.

Down Syndrome NSW is the peak body for Down syndrome. We work with pride to support people with Down syndrome to reach their full potential. Your support at our events makes our work possible. Where we can, we provide events for free or at cost recovery only. We greatly appreciate your support.

We kindly ask that each person attending register a ticket, even if you are sharing a zoom link so it is fair for all.

We look forward to seeing you!