Executive Director
Katie Arnold
Katie Arnold is the first Executive Director of the Sibling Leadership Network. Katie has been involved in the Sibling Leadership Network (SLN) since the organization’s inception in 2007 and she has grown in her commitment and leadership of the SLN over the years in various roles. Throughout the years, Katie has played a key role in planning numerous SLN meetings and conferences and she has presented throughout the country on the importance of siblings and the SLN. As Executive Director, Katie’s focus is on growing the network of members and the capacity of the organization. At the state level, Katie has been involved in the leadership of the Illinois state sibling chapter, Supporting Illinois Brothers and Sisters-SIBS.
Katie grew up in New Jersey as the second oldest of four siblings with disabilities, including her sister, Patrice, who has developmental disabilities. Katie’s sibling experience has shaped her worldview in many ways. After graduating from the University of Chicago, Katie lived at L’Arche Chicago, a community based on mutual relationships where people with and without developmental disabilities live together. She received her Masters in Disability and Human Development at the University of Illinois at Chicago. She works as the Director of Community Education in the Institute on Disability and Human Development where she provides education and training on various topics which include enhancing the direct support workforce, self-directed supports, supporting healthy relationships and sexuality for people with disabilities, family future planning, and the sibling experience. Katie has received numerous awards, including the 2008 AUCD Rudigier award as an emerging leader in the disability field, UIC’s 2009 Humanitarian of the Year award for her dedication to the advancement of human rights of people with disabilities, and the 2011 Chicago Young Nonprofit Professional of the Year. Katie’s passion for her work stems from her experience growing up with her siblings with disabilities. Katie lives in Chicago with her husband, Gary, who is also a disability advocate.
BOARD OF DIRECTORS
Chair – 2013
Shea Tanis
Shea is an Instructor in the Department of Psychiatry at the University of Colorado, and fellow at the Coleman Institute for Cognitive Disabilities in Boulder. She is a doctoral candidate at the top-rated University of Kansas Department of Special Education, where she was the recipient of a leadership fellowship at the Beach Center on Disability. Her doctoral work focuses on the theoretical relationship between support needs and adaptive behavior in children with intellectual disability using structural equation modeling techniques. She currently serves as a research analyst for the State of the States in Developmental Disability Project of National Significance which investigates the determinants of public spending for ID/DD services in the United States. In 2011 she co-authored the State of the States in Developmental Disabilities: 2011 Monograph. She is also Co-PI of an Office of Special Education funded Steppingstones of Technology Innovation for Children with Disabilities, a subcontract from the University of Kansas developing a cognitively accessible website to allow students with significant disabilities in 18-21 programs self-direct their own employment exploration and attainment. Shea is the Vice-Chair of the Sibling Leadership Network and has a brother with ID/DD . She has published peer-reviewed articles on the definition of intellectual disability, the construct of self-determination, assistive technology, and employment strategies for young women with intellectual disability. She received the Anne Rudiger Award from AUCD in 2009, the AAIDD Graduate Student of the Year Award in 2010, and the Council for Exceptional Children 2010 Outstanding Graduate Student Member of the Year Award.
Outgoing Chair – 2013
John Kramer
John Kramer co-founded and is a leader of the Sibling Leadership Network (SLN) in the United States, a growing movement of brothers and sisters of people with disabilities, siblings with disabilities, and committed professionals interested in policy, services, and research related to siblings. Currently he is serving as chair of the SLN. John also co-founded the Massachusetts Sibling Support Network and Supporting Illinois Brothers and Sisters, both state-wide advocacy groups for siblings. John is currently working with the research team at the Institute for Community Inclusion at the University of Massachusetts at Boston on systems change and employment issues for people with disabilities. John Kramer received his Ph.D. in Disability Studies from the University of Illinois at Chicago, with his dissertation addressing the mutual support roles in aging families of people with disabilities and issues of future planning for people with Intellectual Disabilities and their brothers and sisters.
Vice Chair
Pat Carver
Patricia Carver brings a lifetime of heartfelt commitment to her work. This passion began over four decades ago at the birth of her brother and the subsequent recognition that his being “special” meant being set apart. Since then Pat has relentlessly advocated for social justice, especially among citizens who experience cognitive or intellectual disabilities. Today she continues to support her brother (who lives near their childhood home in Virginia) and many others in wide and varied life circumstances while building Community Drive, Inc., a knowledge based practice dedicated to building circles of support, advocacy, training, curriculum development and consultation. She is skilled at person-centered planning, making friends, maintaining meaningful relationships, creating support networks and strengthening individual capacities to create community.
Treasurer
Tamar Heller
Tamar Heller,Ph.D., Professor, is Head of the Department of Disability and Human Development, University of Illinois at Chicago and director of its University Center of Excellence in Developmental Disabilities for the State of Illinois. She also directs the Rehabilitation Research and Training Center on Aging with Developmental Disabilities and projects on family support and health promotion interventions for individuals with disabilities. One of these projects is the Special Olympics Research Collaborating Center.
Dr. Heller has written over 150 publications and presented numerous papers at major conferences on family support interventions and policies, self-determination, health promotion, and aging of people with developmental disabilities. She has co-edited and co-written four books and edited special issues of Technology and Disability, American Journal on Mental Retardation, Journal of Policy and Practice in Intellectual Disabilities, Family Relations.
She is the incoming President-Elect of the board of the Association of University Centers on Disabilities. As a co-founder of the national Sibling Leadership Network, she is a member of its steering committee. Her awards include the 2009 Autism Ally for Public Policy Award of The Arc/The Autism Program of Illinois; the 2008 Lifetime Research Achievement Award, International Association for the Scientific Study of Intellectual Disabilities, Special Interest Group on Aging and Intellectual Disabilities; and the 2009 Community Partner Award of Community Support Services. In 2005 she was a delegate to the While House Conference on Aging.
Secretary
Angela Martin
Angela Martin is a Community Support Specialist/Research Assistant with the Developmental Disabilities Institute at Wayne State University in Detroit, Michigan. Ms. Martin has a Master’s degree in Social Work with a concentration in Community Practice and Social Action. She has experience in family support resource development and curriculum design and training of programs on Self-Determination, Person Centered Planning, and Leadership/Self-Advocacy. Angela’s youngest sibling, who was born with intellectual and development disabilities over 20 years ago, has laid a strong foundation in her life’s work particularly as it relates to Self-Determination. As a founding member of Michigan Partners for Freedom, Angela has been involved in building statewide demand for Self-Determination.
Research Chair
Meghan Burke
Meghan is the oldest of five siblings including a brother, Ryan, who has Down syndrome. Currently, she is a post doctoral fellow in the Department of Disability and Human Development at the University of Illinois at Chicago. She received her Master’s degree and PhD in Special Education from Vanderbilt University. Her research interests include family-school partnerships, disability policy, and families of individuals with disabilities. Previously, Meghan was a preschool teacher for students with disabilities. Meghan has published several articles about siblings of individuals with disabilities. While at Vanderbilt, Meghan co-facilitated sibling workshops for children and teens. Meghan was also a member of the Tennessee Adult Brothers and Sisters Conference Committee as well as the Adult Sibling Research workgroup.
Services and Supports Chair
Tom Fish
Tom Fish, PhD, is a board member of the Down Syndrome Association of Central Ohio. He is the founder of the Next Chapter Book Club, a community literacy and friendship program with over 80 clubs throughout the country. Dr. Fish was a recipient of a Mary Switzer Research Fellowship from the National Institute on Disability and Rehabilitation Research for his work on attitudes of families of youth with disabilities toward transition from school to adult life.
Policy and Advocacy Chair
Kristina Majewski
Kristina is completing a policy fellowship at the Association of University Centers on Disabilities (AUCD) in Washington, D.C. and moving on to a new position at the U.S. Department of Justice (DOJ) as a contract attorney for the Olmstead Enforcement Team in the Disability Rights Section (Office of Civil Rights). At DOJ, she will help enforce the ADA provisions that ensure people with disabilities have the right to live, work, and recreate in the community. She served as the first Leadership Education in Neurodevelopmental and related Disabilities (LEND) Law Fellow of the Rose F. Kennedy University Center for Excellence in Developmental Disabilities (UCEDD) in the Bronx, NY, focusing her research on the transition from special education to adulthood, as well as the state of available housing options and deinstitutionalization efforts. She received her BA in Economics (minor in Social Work) from New York University in 2008. In May 2011, she received her JD degree from the Benjamin N. Cardozo School of Law in Manhattan.
Kristina has been an active member of various advocacy groups and volunteer agencies that specialize in developing community activities, administering legal aid, and providing various resources for individuals with disabilities and their families. She is currently a member working in the disability advocacy field. Kristina is an active member of DC SIBS, a state chapter of the SLN supporting brothers and sisters in Washington, DC, in addition to being a new Sibling Leadership Network Board (SLN) Member.
Public Relations Chair
Emily Holl
Emily Holl is a Senior Manager at YAI/National Institute for People with Disabilities, a New York City based not-for-profit organization which provides services to people of all ages with intellectual and developmental disabilities and their families. She is a member of the Sibling Leadership Network, a national organization dedicated to connecting the siblings of individuals with developmental disabilities to information, resources, support and each other. Emily is a founding member of sibsNY, an organization with the same mission for siblings throughout New York state.
Chair of Network Development
Ashley Coulter
Ashley Coulter is the Sibling Project Coordinator at the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. Ashley coordinates the SibSaturday program for children with brothers or sisters with disabilities, as well as Tennessee Adult Brothers and Sisters (TABS), a statewide organization for adult siblings. Ashley currently serves on the Board of Directors for The Arc of Tennessee, as well as Chair of the Membership Committee. She also serves as Chair of Network Development for the Sibling Leadership Network.
Ashley graduated from Auburn University with a degree in Rehabilitation and Disability Studies in 2006. She is the older of two siblings. Her brother, Will, is four years younger and has cerebral palsy. He is currently taking online courses in computer forensics! Ashley is married and has a daughter and lives just outside of Nashville, Tennessee.
Alabama Chapter Representative
Karen Driver
Karen Driver graduated magna cum laude from the University of Montevallo with a Bachelor’s Degree in Social Work and a Minor in Business. She has a Master’s Degree in Social Work from the University of Alabama and is currently a Licensed Graduate Social Worker. Karen graduated from Partners in Policy Making in 1996 and was appointed by Governor Bob Riley to the Alabama Council for Developmental Disabilities in 2010. Previously, Karen worked for 20 years at a Fortune 500 Company in accounting while at the same time maintaining the accounting portion of her family’s business. Due to having two siblings with developmental disabilities, Karen decided to join The Arc of Shelby County part-time to support, and join with, other families in advocating for disability related issues while maintaining her position as Vice-President of her family’s business.
Illinois Chapter Representative
Nora Handler
Nora Fox Handler is a committed sister to her three brothers with developmental disabilities, Marty, Patrick, and Michael. Michael also has a serious mental illness. She is a passionate advocate for people with disabilities and their families. She shares the story of her family’s experience and the consequences of their lack of planning for the future. Her story is published in Thicker Than Water: Essays by Adult Siblings of People with Disabilities.
Nora is a founding member and treasurer of Supporting Illinois Brother and Sisters (SIBS) in Illinois and on the Board of Directors of the national Sibling Leadership Network. She also serves on the Advisory Committee of the Sibling Support Project. Nora is an advocate advisor of the Rehabilitation Research and Training Center on Aging with Developmental Disabilities (RRTCADD) and the Institute on Disability and Human Development at the University of Illinois at Chicago. Nora received the Family Advocate award from the Arc of Illinois and is a Board member of the Arc of Illinois.
Georgia Chapter Representative
Regina Sullivan
Regina Sullivan was raised in Alabama. She is the middle child of three, with the oldest sibling, Plato, diagnosed with Autism at the age of four. She is presently the mother of two and wife of Joseph Sullivan. She is also a captain in the Air National Guard, a practicing Doctor of Optometry, and pursing her Master of Public Health at Georgia State University. As a graduate research assistant at Georgia State University, she works for the Center of Leadership in Disability (CLD), which is a division of the Center for Healthy Development.
The Georgia Sibling Connection is a chapter of the Sibling Leadership Network and supported by the CLD. The mission of the GSC is to provide adult siblings of individuals with developmental disabilities information they need to support their sibling’s desire to live the most independent and fulfilling life possible, serve as advocate or voice for their sibling, and let them know that we understand the struggles they face.
Michigan
Pat Carver
Patricia Carver brings a lifetime of heartfelt commitment to her work. This passion began over four decades ago at the birth of her brother and the subsequent recognition that his being “special” meant being set apart. Since then Pat has relentlessly advocated for social justice, especially among citizens who experience cognitive or intellectual disabilities. Today she continues to support her brother (who lives near their childhood home in Virginia) and many others in wide and varied life circumstances while building Community Drive, Inc., a knowledge based practice dedicated to building circles of support, advocacy, training, curriculum development and consultation. She is skilled at person-centered planning, making friends, maintaining meaningful relationships, creating support networks and strengthening individual capacities to create community.
Pat is serving on the Sibling Leadership Network Board of Directors as the state chapter representative of Michigan Supporting & Including Brothers & Sisters.
Massachusetts Chapter Representative
New Hampshire Chapter Representative
Kaleigh Hansen
Kaleigh Hansen is Sibshop Facilitator at SIBS NH. Prior to starting SIBS NH with another facilitator, Kaleigh co-facilitated the Siblings Program at Gateways Community Services in Nashua NH for more than 5 years! Kaleigh has a brother, Joshua, that experiences intellectual disabilities as well as Epilepsy. Kaleigh is a graduate of Nashua Community College with an associate degree in Human Services. She is currently working on her Bachelor’s Degree in Child and Adolescent Development. She is also a graduate of the Family Leadership Program through the New Hampshire Institute on Disabilities.
New York Chapter Representative
Lindsay Kennedy
Lindsay is currently working in the New York City Department of Education as a Mathematics Teacher. She received her Bachelor’s Degree in Education from Boston University and her Masters Degree from Touro College. Prior to working in New York, Lindsay taught for one year in Boston, Massachusetts and for three years in London, England.
She has three sisters, one of whom was born with developmental disabilities and resides in an AHRC community residence on Staten Island, NY. Lindsay is a member of AHRC’s Sibling Committee and helps organize an Annual Cocktail party to support AHRC Sibling Services. She is a member of SibsNY, an organization dedicated to connecting the siblings of individuals with developmental disabilities to information, resources, support and each other.
Ohio Chapter Representative
Barb Sapharas
Barbara Sapharas, MA is a Specialist in Training and Research Cuyahoa County Board of Developmental Disabilities, Cleveland, Ohio. She is also on the board of Ohio SIBS. She is a speech language pathologist, mentor trainer of the Learning Community for Person Centered Practices and has a younger brother, Nick who had cerebral palsy and needed total supports. She had supported him through his adulthood ad as he learned that he was terminally ill. She used the person centered tools to enhance his quality of life support his right to make informed decisions through his life and at the end of his life.
Pensylvania Chapter Representative
Lynne Mack
Lynne Mack is the Pennsylvania Sibling Support Network (PSSN) representative of the SLN. She lives in Philadelphia, PA with her sister, Diona, who has a significant seizure disorder. Her sister has been a huge part of her life and has been the catalyst for getting involved in the work that she has done over the years as an advocate for individuals with disabilities. Lynne has written and published three fiction books. She is currently the CEO of her publishing company called Agatha Carr Publications.
Tennessee Chapter Representative
Tina Prochaska
Tina Prochaska is Communication Specialist and Sibshop Coordinator at the Tennessee School for the Deaf in Knoxville where she has served as a Sibshop leader for almost 20 years! Tina has a deaf brother, Michael. She has been instrumental in bringing Sibshops to siblings of children who are deaf, deafblind or have CHARGE Syndrome.
Tina is active in Tennessee Adult Brothers and Sisters (TABS), an adult sibling support group. She is a member of the Sibling Support Project’s Advisory Committee and is also a member of the Community Advisory Committee at the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities. Tina is a graduate of the University of Tennessee, with degrees in Deaf Education and Curriculum and Instruction.
Washington, D.C. Chapter Representative
Rachel Patterson
Rachel Patterson is a founding member of DC Sibs, the SLN chapter for the Washington, DC metropolitan area. She graduated from Whitman College with a degree in Politics, and her undergraduate thesis focused on the role of personhood for people with developmental disabilities in long term care policy. She has a Master’s Degree in Public Administration from the Maxwell School at Syracuse University. While in Syracuse she worked for the Burton Blatt Institute before moving to her current position at the Association of University Centers on Disabilities in Silver Spring, Maryland. Her sister, Amy, has Wolf-Hirschhorn Syndrome, which causes intellectual and developmental disabilities.
Members at Large
Don Meyer
Don Meyer is the director of the Sibling Support Project. Don is probably best known for creating Sibshops, lively programs just for young brothers and sisters of kids with special needs. Currently, there are over 260 Sibshops in eight countries. Don also created SibKids and SibNet, no-cost listservs for young and adult brothers and sisters which allow hundreds of siblings from around the world to connect with their peers. A sought-after speaker, Don has conducted hundreds of workshops on siblings, fathers, and grandparents of children with special needs and trainings on the Sibshop model throughout the United States, Canada, Ireland, England, Italy, New Zealand, and Japan. Don was a founder of the SEFAM (Supporting Extended Family Members) program at the University of Washington, which pioneered services for fathers, siblings, and grandparents of children with special needs. Don is the senior author or editor of Sibshops, and the children’s books Views from Our Shoes and the Sibling Slam Book. His most recent book is Thicker than Water:essays by adult siblings of people with disabilities.
Eric McVay
Eric McVay is a board member of the Sibling Leadership Network and a member of Self Advocates Becoming Empowered (SABE), the national self-advocacy organization for people with developmental disabilities. He is also an active member of his state self-advocacy organization in Maine called Speaking Up For Us. Eric is also part of the Consumer Council System of Maine, a voice for consumers of mental health services. He is active in advocacy and knowledgeable about policies that impact people with disabilities. Eric lives in his family home in Maine. He has a close relationship with his older sister.
