Sibling Connections Newsletter Fall 2004

Greetings siblings!

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD) has started the Sibling Connections newsletter as a resource for siblings who are interested in advocacy and care issues for their brothers and sisters with disabilities. Please check here periodically for updates!

Please email and comment/feedback/suggestions to

John Kramer: [email protected]

Siblings come together for Illinois Sibling Connections Conference
What siblings liked about Sibling Connections
What did attendees get out of Sibling Connections?

Pictures from Sibling Connections

Sign up to Sibling Connections listserv for more information on upcoming events

Contact us!

Sponsors for Sibling Connections 2004

Siblings come together for Illinois Sibling Connections Conference

Deerfield, IL- Siblings of people with disabilities, parents, and professionals gathered for the first ever Sibling Connections Conference, sponsored by the RRTC on Aging with Developmental Disabilities at the Center for Enriched Living on October 29th and 30th, 2004. “I really want this to be a chance for siblings to talk to other siblings and to get energized about this conference,” the director of the RRTC, Tamar Heller, said. This conference not only provided siblings with a chance to network, it also featured nationally known experts on the lifelong relationships of people with disabilities and their siblings and also provided siblings with the chance to hear from local experts who are active in the disability field.

Siblings at Sibling Connections

The Executive Director of the Center for Enriched Living, Harriett Levy, opened with a warm welcome. The Dean of College of Applied Health Sciences, Toby Tate, welcomed the participants the conference, stating, “I had no idea that there was help for people who play in the lives of our sisters and brothers who happen to need extra help.” Heller highlighted the latest research findings on siblings of people with disabilities and offered her own experiences as a sibling.

Dean Tate

Siblings are key future informal caregivers for adults with disabilities; yet they typically are not targeted by professionals. The RRTC on Aging with Developmental Disabilities partnered with the Center for Enriched Living to create the Sibling Connections Conference to reach out to adult siblings.

Participants had the opportunity to listen to and meet a wide variety of experts on sibling relationships of people with disabilities. The speakers highlighted very important issues to siblings ranging from what current research says about siblings to how siblings can be better advocates for their brothers and sisters with disabilities.

(From left to right) Harriett Levy, Don Meyer, Mary McHugh, Tamar Heller, & Tom Fish

Mary McHugh, author of “Special Siblings” and current writer for Good Housekeeping, also gave the attendees her insights from interviewing other siblings for her book. “I interviewed a hundred siblings,” Mary said, “I wanted to write a book that would be a friend to siblings of people with disabilities.”

Siblings got up bright and early on Saturday morning to hear Don Meyer, creator of Sibshops, talk about what siblings of people with disabilities want their service providers to know. He stressed that siblings often have the longest relationships with each other, but are all too often neglected in by service providers. Don has been promoting Sibshops as a great place for siblings to realize that “they are not alone” by giving siblings a chance to relate to each other and to vent their feelings.

Tom Fish closed out the conference by reinforcing the need to advocate for their brothers and sisters with disabilities to siblings. Tom stressed that siblings should “express themselves clearly, directly, and without guilt” to be effective advocates for their brothers and sisters. Tom heads the Ohio SIBS initiative whose primary goal is empower adult siblings of people with disabilities through informational and referral resources.

Participants also went to several breakout sessions about legal/financial aspects of future planning, relationships and sexuality of people with disabilities, navigating the service system in Illinois, and health and wellness.

The RRTC plans continuing ongoing activities for siblings of people with disabilities. Please contact John Kramer for more information on upcoming events.

What siblings liked about Sibling Connections

“…[I liked] meeting others and gaining more info regarding services for my sib...”

“I was so impressed with the wonderful feeling of warmth, compassion, and passion.”

“I liked the freedom to exchange ideas.”

“I loved meeting with other siblings and discussing issues, laughing, connecting, and learning the system.”

“liked concrete info (financial/legal) that was very educational…”

“...presenters are so knowledgeable. I have attended so many conferences I feel as if I hear the same thing over and over. [I] received a lot of new content.”

What did attendees get out of Sibling Connections?

Siblings had the chance to meet leading experts and to join forces with other siblings who experience similar issues. Many siblings learned about issues that they had not previously known about. Nearly 3/4 felt they learned more about sibling issues. This information is key for siblings who are often not included in family discussions. Siblings also plan to share what they’ve learned with their friends and family. Siblings anticipate being a better advocate for their brother or sister.

Several siblings plan to start their own sibling groups in their community. “I’ve already bonded with several [people] and we’ve shared emails,” one conference-goer said, “we are planning a get together for dinner or lunch in the near future.” Several other siblings plan to develop their own programs for siblings.

In fact, just last week, siblings from the Chicagoland area met at Buca’s over a fine Italian “family style” dinner. It was exciting to see several of the siblings from Sibling Connections as well as some new faces. Thanks to Jill Hoffsted for taking the initiative in bringing us together! This group looks to be a very dedicated bunch who are very interested in socializing with each other (and our siblings!) as well. Also, Jacqui Skelly and Tara Koseniak are starting on on-line group of which one of their first suggestions is to raise awareness of sibling issues by writing Oprah. Please check out or subscribe to [email protected] for more information.

The RRTC is currently looking for siblings who are interested in participating in workshops on future planning for people with disabilities. Groups will be forming after the New Year, so please contact John Kramer at [email protected] for more information on when and where these workshops will be. We are also looking for siblings to interview about their future planning experiences, so please contact John if you are interested and he will tell you more about it!

The RRTC will be doing this newsletter quarterly. If you’d like to sign up and haven’t already, please follow these directions. If you have any suggestions on topics to cover in future issues or have difficulties signing up, just email John Kramer .

Sign up to Sibling Connections listserv

Please join the sibconnections list serv to keep up-to-date on upcoming Sibling Connections events.

1. To subscribe please send an email to [email protected] with the following in the body of your message:

subscribe sibconnections

Click send.

2. When you get an email with the title “Command confirmation request,” open it.

3. click on the link after the text “To confirm the execution of your command, simply point your browser to the following URL:”

4. You will receive a confirmation email shortly.

EXAMPLE: My name is John Kramer and I wish to subscribe to sibconnections.

Subscribe sibconnections John Kramer

Click send.

You should receive a confirmation email shortly after your submittal.

Contact us!

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities
The Department of Disability and Human Development
University of Illinois at Chicago
1640 W. Roosevelt Rd
Chicago, IL 60640

The Supporting Siblings in Future Planning Project
John Kramer
Rm 538
Phone: 312-996-7988
Fax: 312-996-6942
Email: [email protected]

Very Special Thanks:

We extend our thanks to the Center for Enriched Living for hosting of Sibling Connections and the College of Applied Health Sciences at UIC for its generous financial support.

We also wish to thank our sponsors for promoting this event.

We thank all our speakers and breakout session leaders for their generous contributions and expertise. We also thank Tom Fish, Don Meyer, Mary McHugh and all the other speakers for their time and energy in making this conference a success.

Finally, we thank Ohio SIBS for the inspiration for this event in Illinois.

-The Sibling Connections Staff