Attention Professionals

CEUs are available for attending the conference. The Institute on Disability and Human Development Community Education Program, University of Illinois at Chicago is approved and licensed to issue CEUs for:

Nursing Home Administrators
Social Workers
Speech Language Pathologists

Required documentation will be available at the registration desk.


Friday, August 6

Participants begin arriving.

3:00 – 8:00 PM       Registration Opens

12:00 – 5:30 PM     Sibling Leadership Network Board Meeting

6:30 – 7:30 PM       Meeting with Facilitators and Volunteers

7:30 – 9:00 PM       Informal Reception hosted by Hyatt Regency 

Saturday, August 7

7:00                 Registration Opens.
All must be seated by 8:00 AM


8:00 – 8:45          Welcoming and Opening Ceremony                             

Procession of volunteers and presenters

Song by Larry Oliveri



                             Presentation by Emily Perl Kingsley

8:45 – 9:15            What is self-determination and why is it so important?
Tamar Heller, Ph. D. and Tia Nelis

9:15– 10:30           Interactive Plenary Session


Facilitated by Don Meyer, Director, Sibling Support Project in Seattle, Washington

10:30 – 10:45         Break

10:45 – 11:45         Continuation of Plenary Session


Don Meyer will moderate a panel of young adult and adult brothers and sisters who will discuss life with siblings who have special needs.

All will be covered: the good parts, the not-so-good parts and verything in-between. Along the way, panelists will offer suggestions to parents and providers.


                                     Kathleen Houghton–Somerville, Massachusetts
Mary McHugh–Chatham, New Jersey
Mark Goldberg, J.D.–New York City
Delilah Brewer Picart–Pittsburgh, Pennsylvania


11:45                           Presentation by Eileen Garvin

12:15                           Lunch

Guest presenter: Chris Burke

                                     International Reports:

                                     Siblings in Australia: Ariella Meltzer
Siblings in Japan: Tomohiro Suwa

1:45 – 2:45             Breakout Sessions

  • Supporting our Brothers and Sisters Using Person-Centered Thinking and Planning Tools: Barbara Sapharas (Sibling)
  • Families of children with special needs: Issues and restructuring of family roles: Laura Lustig, Ph.D., LMFT (Family)
  • Employment of People with Disabilities Robin Wood
  • The Facts of Life …and More: What is Meaningful Sexuality Education for Individuals with ID/DD and Why Is It So Important: Leslie Walker-Hirsch, M. Ed. (Family)

2:45 – 3:00                 Break

3:00 – 4:00                Breakout Sessions  

  • When quiet Courage Screams: Proven ideas for services and supports for children and adults who have siblings with special needs: Harriet Redman (Professional).
  • Decision-making in a crisis: Perspective of a sibling, self-advocate, and sib-in-law: Nora Handler, Bruce Handler, and Marty Fox (Sibling)
  • Challenges for families of persons with developmental disabilities through the Life Cycle—A Clinician’s Perspective: Marc Adelsberg, Ph.D. (Professional)
  • How illnesses like Alzhemer’s  can add to your creativity and experience of life that can make you stronger. These challenges make you a better person. Challenges expressed in art that have won national awards. Don Axleroad, Alison A Boteler and Charla Boteler.   

4:15 – 5:15            The Sibling Leadership Network: Katie Arnold and
Tom Fish, Ph.D.

5:15 – 6:15               Free Time

There will be book signing in/by the resource and hospitality room.

6:15-8:00              Dinner

                                   Special Presentation:

                                   Singer Larry Oliveri                                            

                                   Keynote Speaker:     Cheryl Wills NY1 News Anchor
and brother Clarence Wills

Sunday, August 8

7:30                      Breakfast

8:15-9:15             Breakout sessions 

  • Doing Activities in the Community with my Sibling – Next Chapter Book Clubs: Tom Fish, Ph.D. (Sibling)
  • Alzheimer’s Disease and Down Syndrome: Current Research: Warren B. Zigman, Ph.D. (Professional)
  • What Research Tells Us: The Challenges and Benefits for Siblings Across the Life Span: Ann Kaiser, Ph.D. and Cynthia Chambers, Ph.D. and John Kramer, Ph.D.(Professional)
  • Sex and the City for Sibs: How Having Siblings with Disabilities Has Impacted Our Choices in Love, Partnership and Starting Families: Emily Holl, MFA, Mark Goldberg, J.D., Clare Ferramosca, and Connie Murray (Sibling) 

9:30 – 10:30

  • Mom and Dad, Let’s Talk About the Future: Essie Pederson and Tara Kosieniak (Sibling)
  • The 12 Steps to managing a relationship with an addict sibling: Carrie Ostrow
  • Gaining insight into the Lives of Families That have a Child with “Special Needs”. A Nationwide Study of “Typically Developing” Siblings: Tyler Lipperman, Elyse Blueglass, Morgan Blueglass and Amanda Buonagurio. 
  • Sib-in-laws:  The Partner’s Perspective:  Being a good passenger and not a back seat driver. Bruce Handler and Jessica Kramer, Ph.D.

10:45 – 11:45

  • Wrap up: What Now? Suggestion for where we go from here.
  • Participant Announcements and Sharing

11:45 – Noon            Closing Remarks