Sibling Leadership Network Conference

November 6 & 7, 2008

Columbus, Ohio

Agenda: Thursday, November 6th 8am Registration & Continental Breakfast 9:00 Welcome & Introductions

Tom Fish, Ph.D., The Ohio State University Nisonger Center 9:30 The Sibling Role in Developing Disability Policy

Stanley Klein, Ph.D., Co-chair of the Obama ’08 Disability Policy Committee

11:00 View from the Senate HELP Committee U.S. Senator Sherrod Brown

11:15 The Sibling Leadership Network: Who We Are and How We Got Here Tamar Heller, Ph.D., University of Illinois at Chicago 12:00pm Lunch on your own 1:00 Addressing Sibling Concerns: A conversation with representatives from National

Disability Advocacy and Caregiver Organizations Andy Bean, National Down Syndrome Congress Lisa Goring, Autism Speaks Rose Walker-Smith, National Family Caregiver Association

2:00 Becoming Better Advocates

Dean Fadel, Public Affairs Advocates 3:15 Ongoing white paper workgroups:

• Services and Supports—led by Tom Fish and Don Meyer • Policy and Advocacy—led by John Kramer • Research—led by Tamar Heller and Ann Kaiser

5:00 Breakouts with a Twist! Please join us in the hotel restaurant for conversations over drinks:

• Sibshops and other considerations for young brothers and sisters Don Meyer, Sibling Support Project

• Learning more about the DD Act and Reauthorization Cathy Allen, OhioSIBS

• Caring for the Caregiver Tom Fish, Ph.D., Nisonger Center

• For Better or Worse: Siblings influence on choosing a mate Emily Marino Holl, YAI Katie Keiling, University of Illinois at Chicago

6:30 Conclude

Friday, November 7th 8:00 Continental Breakfast 8:30 Welcome and Introductions Derrick Dufresne, Senior Partner, Community Resource Alliance 8:35 Where?s Molly—A nationally acclaimed documentary about a brother and a sister

Jeff and Cindy Daly, film writers and producers 10:00 Breakout sessions (choose one session to attend):

A. Creating Community-based Adult Sibling Programs Moderated by Don Meyer, Sibling Support Project Ashley Coulter, Tennessee Adult Brothers and Sisters (TABS) Anne Guthrie, Washington State Adult Sibs (WSAS) Nora Handler, Supporting Illinois Brothers and Sisters (SIBS) John Hannah, Ohio People First Michael Henn, Ohio SIBS: Special Initiatives for Brothers and Sisters Emily Marino Holl, YAI/National Institute for People with Disabilities Tara Koseniak, Supporting Illinois Brothers and Sisters (SIBS) Harriet Redman, Fox Valley Sibling Support Network

B. Research involving siblings Tamar Heller, Ph.D., University of Illinois at Chicago Ann Kaiser, Ph.D., Vanderbilt Kennedy Center

C. SLN as an organization: Mission, vision, governance Derrick Dufresne, Senior Partner, Community Resource Alliance Cathy Allen, Ohio SIBS and Creative Option C, LLC

11:15 Fingers on the Same Hand: Siblings and Self-Advocates Working Together for

Policies and Practices to Benefit Everyone Bryon Murray, Self Advocates Becoming Empowered John Kramer, Ph.D., Institute for Community Inclusion

12:15 Working Lunch--Reports on status of white paper workgroups (box lunch provided)

Derrick Dufresne, Senior Partner, Community Resource Alliance 1:00 Sibs’ Role in Self-Determination

Michael Wehmeyer, Ph.D., Director, Kansas University Center on Developmental Disabilities

2:30 Closing Remarks

Conference Speakers: Cathy Allen is the owner of Creative Option C, LLC a consulting firm helping groups and organizations with strategic planning, including stakeholder analyses and effective meeting management. A long-time activist and advocate for various causes, this is the first year since 1984 that Cathy does not have a candidate or issue on the ballot. For the last year, Cathy has been active with the Ohio SIBS group and is one of the organizers for this conference and also the Ohio Adult Sibling Conference. Cathy has three brothers, including Tom, who lives independently with Down Syndrome. Email: cathy718@earthlink.net Andy Bean is a member of the National Down Syndrome Congress's "Team Tandem," charged with "Expanding the role of Self-Advocates." For the past six years, Andy has been a facilitator for the NDSC's Youth and Adult Conference and supports the Self-Advocates' Council, a group of past and present board members promoting awareness through self-advocacy. He and his wife Laura are raising three gifted siblings in Mentor, Ohio. His oldest son Christopher has Down syndrome. Email: andybean@sbcglobal.net Sherrod Brown was elected to the United States Senate in 2006 after a 14 year career in the U.S. House of Representatives. A member of the Senate Health, Education, Labor, and Pensions committee, chaired by Senator Edward M. Kennedy, Senator Brown is poised to become one of our nation’s key leaders in setting policy related to people with disabilities and their families. Senator Brown is a keen advocate for expanding health care coverage to all Americans, and has been a leader in the ongoing struggle for civil rights. He lives near Cleveland with his wife Connie Schultz. They have three grown daughters. Senator Brown has two brothers. Ashley Coulter is the Outreach & Training Coordinator at Tennessee Disability Pathfinder, a program of the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. She provides community trainings on a variety of topics, including disability services across the state of Tennessee and People First Language. Ashley is also a lead facilitator for the SibSaturday program, and coordinator of the TABS (Tennessee Adult Brothers & Sisters) group. Ashley's brother, Will, has definitely had an impact on her life! Email: ashley.coulter@Vanderbilt.Edu Jeff and Cindy Daly of San Francisco are the writers and producers of the documentary film Where?s Molly. When Jeff Daly was 6 years old, his little sister, Molly, then 3, disappeared, leaving him confused and sad. Molly had been placed in a state institution for children with disabilities by her parents and had grown up with little family connection. Where?s Molly. Documents Jeff’s extraordinary effort, more than 50 years later, to find out what happened to his sister and be reunited with her. In addition to creating this wonderful film, the Dalys are also actively involved in the national promotion of “Molly’s Bill,” a bill that will help families find relatives with disabilities who once lived at state institutions. They also helped to establish ArcLink’s Find Family Registry, which helps families reunite with lost relatives.

Derrick Dufresne is the founder and senior partner of Community Resource Alliance (CRA). He has been offering insightful training and consultation services since 1982. In 2003, Derrick was named President and CEO of the Institute on Public Policy For People with Disabilities in Illinois. He is deeply committed to assisting families, providers, advocates, state officials and others in the implementation of the principles of full inclusion for all persons with disabilities into the mainstream of community life. Email: cra@aol.com Dean Fadel is a sibling who will be sharing his knowledge and experience on impacting legislation. He is a Principal with Public Affairs Advocates as well as the Vice President of Government Relations for the Ohio Insurance Institute. Dean serves on the board of directors for the Franklin County Board of Mental Retardation and Developmental Disabilities (MRDD) and also on the board of the Ohio Association of County Boards of MRDD. Dean’s brother, Jeff, lives in Columbus with his provider in a home Dean and his wife purchased. Tom Fish, Ph.D., is Director of Social Work and Family Support Services at The Ohio State University Nisonger Center on Disabilities and founder of OhioSIBS. He directs four funded projects focusing on issues of community inclusion, adult literacy, service learning, transition, family/sibling support, and autism. Dr. Fish is the founder of the Next Chapter Book Club, a community based adult literacy program with more than 80 clubs throughout Ohio and in 13 other states. Dr. Fish teaches classes at The Ohio State University College of Social Work and is a board member of the Down Syndrome Association of Central Ohio. Email: fish.1@osu.edu

Lisa Goring is the Director of Family Services at Autism Speaks, whose mission is to: 1) empower families and individuals impacted by autism to make informed decisions that maximize the quality of life and development potential of affected individuals; 2) to promote research funding that yields evidence for the best practices in the treatment of autism and associated disorders; and 3) to serve as a catalyst and advocate for the implementation of best practices in autism treatment, education, and services from early intervention through adult care. Lisa lives in Manhasset, New York with her husband Paul and two children, one of whom has autism. Email: Lgoring@autismspeaks.org Anne Guthrie is representing The Washington State Adult Sibs (WSAS). A sib herself, Anne Guthrie has coordinated sibling events in New York, Kansas, and Washington State. Anne has a long-standing interest in adult sibling issues. John Hannah is a member of Ohio People First. He has been an active participant in the OhioSIBS conference in the past. Email: JHannah@crsi-oh.com Nora Fox Handler helps her sister who is the primary caregiver to their three brothers with developmental disabilities and mental illness and advocates for siblings and people with disabilities. She is one of the founding members and treasurer of SIBS Supporting Illinois Brothers and Sisters. Nora is an advocate advisor for The Rehabilitation Research & Training Center on Aging With Developmental Disabilities at the University of Illinois at Chicago. Email: Handler55@aol.com

Tamar Heller, Ph.D., is Professor and Head of the Department of Disability and Human Development, University of Illinois at Chicago. She also directs the Rehabilitation Research and Training Center on Aging and Developmental Disabilities: Lifespan Health and Function. In addition she is director of the University Center of Excellence in Developmental Disabilities for the State of Illinois and is president-elect of the Association of University Centers on Disabilities. Tamar has a sister with developmental disabilities. Email: theller@uic.edu Michael A. Henn is a financial advisor professionally. His twin sister Nancy who has Autism, lives in Akron, Ohio. Michael has been involved with the OhioSIBS Conference since 2002 and is currently the Chair of the Sibling Advisory Council. Michael hopes to empower the sibling community in Ohio and strengthen the efforts nationally. Email: mhenn@swisherfinancial.com Emily Marino Holl is the Senior Manager of Writing at YAI/National Institute for People with Disabilities in New York City. YAI provides a variety of services for people of all ages with intellectual and developmental disabilities throughout New York, New Jersey, Puerto Rico and the U.S. Virgin Islands. Emily also coordinates sibling activities at YAI, and is a member of the Sibling Leadership Network. She and her brother, Peter, who has a developmental disability, share a love of music, the NY Yankees and each other. Email: Emily.MarinoHoll@yai.org Ann Kaiser, Ph.D., is the Susan W. Gray Professor of Education and Human Development at Peabody College of Vanderbilt University. She is the Director of the Vanderbilt Kennedy Center’s Family Research Program. Dr. Kaiser’s primary area of research is early language intervention for children with developmental disabilities and children at risk. Her research has included the analysis of the effects of interventions implemented by early childhood educators, parents, siblings, and peers. Email: ann.kaiser@vanderbilt.edu

Katie Keiling is the Community Support Coordinator in the Institute on Disability and Human Development at the University of Illinois at Chicago. Katie provides education and resources on topics which include self-directed supports, enhancing the direct support workforce, promoting healthy relationships and sexuality for people with disabilities, and the sibling experience. Katie has been influenced by her younger sister with a developmental disability. Email: kkeiling@uic.edu Stanley Klein, Ph.D., is a clinical psychologist and educator. Since May 2007, he served as Co-chair Obama ’08 Disability Policy Committee He has worked with children with disabilities and their parents for fifty years, and has received numerous national awards for his work. He founded DisABILITIESBOOKS, Inc. in 2002 and serves as Director of the company. Dr. Klein provides clinical services for parents of children with disabilities at the Boston Institute for Psychotherapy in Brookline, Massachusetts. He is also a regular contributor to inSight, the national newsletter of The Arc. Dr. Klein co-founded Exceptional Parent magazine in 1971 and served as editor-in-chief of the magazine for parents of children with disabilities until 1997.

Tara Kosieniak is currently an Individual Service Coordinator (ISC) with Service of Will, Grundy, and Kankakee Counties in Illinois. She provides support and advocacy services to adults with developmental disabilities in Medicaid Waiver programs. She has worked with people with developmental disabilities for the past eighteen years in a variety of capacities. Tara also provides support to siblings by running Sibshops in her state and is the co-founder of SIBS (Supporting Illinois Brothers and Sisters). SIBS is a not for profit that provides support to siblings across the life span. Tara has been influenced by her younger brother who has significant developmental disabilities. Email: tarasibsnet@yahoo.com John Kramer, Ph.D., is the research associate at the Institute for Community Inclusion at the University of Massachusetts at Boston. John’s current work focuses on systems change for services in states across the United States. His recently completed dissertation focused on the roles which adult siblings with and without disabilities play in each other’s lives and in planning for the future when parents can no longer provide care. Email: john.kramer@umb.edu Don Meyer is the director of The Sibling Support Project. As the project's director, Don has conducted more than 300 workshops in all 50 states as well as Canada, Guatemala, Ireland, Italy, England, New Zealand, and Japan. His workshops and trainings have reached over 8,000 parents and providers have helped establish more than 200 Sibshops worldwide. The SibKids and SibNet listservs, which Don created for young and adult siblings in 1996, connect brothers and sisters from around the world with their peers every day. Email: donmeyer@siblingsupport.org Bryon Murray is both a state and national leader in the self-advocacy movement. He is the Region 3 Representative to the National SABE Board and past Chair of the Utah Developmental Disabilities Council. Bryon is self-employed and building a motivational speaking/training business. He self-published his autobiography and he is active politically. He ran for Roosevelt City Council twice. He is the father of two boys and a soccer coach. Bryon and his sister have reconnected and she is supporting him with his speaking and advocacy engagements around the country. Email: bryonspeaker@gmail.com Harriet Redman is representing The Fox Valley Sibling Support Network Harriet is both a mom and founder of the Fox Valley Sibling Support Network in Appleton, Wisconsin. The FVSSN is a long-time sponsor of Sibshops and is sponsors an annual adult sibling conference and hosts workshops on planning for the future of a sibling who has a disability. For more information, visit www.fvssn.org. Email: fvssn@fvssn.org Michael Wehmeyer, Ph.D., is Senior Scientist and Associate Director of the Beach Center on Disability and is an internationally recognized expert on self-determination, intellectual and developmental disabilities, and access to general education curriculum for students with intellectual and developmental disabilities. Email: wehmeyer@ku.edu

Thank you to the Conference Planning Committee and Steering Committee:

Cathy Allen Ashley Coulter

Derrick Dufresne Tom Fish

Tamar Heller Ann Kaiser

Katie Keiling John Kramer

Erika Magallanes Don Meyer

Essie Pederson

Support for this conference was provided by: Alfred B. Ashman, Jr. Memorial Trust #2 Fund of The Columbus Foundation

A National Gateway to Self-determination

Nisonger Center at The Ohio State University

Rehabilitation Research and Training Center on Aging and Developmental

Disabilities: Lifespan Health and Function

Sibling Support Project

Vanderbilt Kennedy Center for Excellence in Developmental Disabilities

Hosted by:

The Rehabilitation Research and Training Center on Aging with Developmental Disabilities