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 UIC’s 2009 Humanitarian of the Year award for her dedication to the advancement of human rights of people with disabilities, the 2011 Chicago Young Nonprofit Professional of the Year, and the 2013 National Leadership award from The Arc of Illinois. 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
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.
Outgoing Chair
Shea Tanis
Shea is a Senior Instructor in the Department of Psychiatry at the University of Colorado, and staff at the Coleman Institute for Cognitive Disabilities in Boulder. She received her doctoral degree from 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. She currently serves as the Research Coordinator 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 and 2013 she co-authored the State of the States in Developmental Disabilities 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 South Dakota 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 and 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 adults 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.
Vice Chair
Barb Sapharas
Barbara Sapharas is on the Board of Ohio SIBS and lives in the Cleveland, Ohio area. She has worked in the field of developmental disabilities for over 37 years. She is a Speech Language Pathologist and a Mentor Trainer in the Learning Community for Person Centered Practices. Her youngest brother, Nick, had cerebral palsy and needed total supports. She supported him through his adulthood and as he learned that he was terminally ill. She used the person centered tools to enhance his quality of life and support his right to make informed decisions throughout his life, including at the end of his life.
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 theDevelopmental Disabilities Institute at Wayne State University in Detroit, Michigan. Angela 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 30 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. Angela serves as Secretary of the Sibling Leadership Network (SLN) Board of Directors. She is also a founding member of Michigan Supporting and Including Brothers and Sisters (MI SIBS), the Michigan state chapter of the SLN.
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.
Co-Chair of Research
Caya (Chun-Yu) Chiu
Caya (Chun-Yu) initially pursued special education because she has a brother with significant intellectual and physical disabilities. Knowing that building family capacity can improve individual and family outcomes, she decided to move from Taiwan to the U.S. to advance her knowledge and research skills in the areas of special education, families, and public policy. She received her Master’s from Vanderbilt University and just earned her Ph.D. from University of Kansas.
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 Majewski is a contract attorney at the U.S. Department of Justice (DOJ) Disability Rights Section. Prior to joining the DOJ, she completed a one-year fellowship at the Association of University Centers on Disabilities (AUCD) in Washington, D.C. She received her BA in Economics (minor in Social Work) from NYU in 2008, and her law degree from Cardozo School of Law in 2011. From a young age, Kristina was introduced to the disability advocacy world through her younger brother Kevin who has an intellectual and developmental disability. As her interest in law and advocacy grew , Kristina joined several volunteer agencies in NY/NJ that specialize in developing community activities, administering legal aid, and providing various resources for individuals with disabilities and their families. Currently, Kristina is an active member of DC SIBS, a statechapter of the SLN supporting brothers and sisters in DC, as well as a member of her hometown’s parent and sibling advocacy network.
Chair of Network Development
Erin Sweeney Hutzelman
Erin Sweeney Hutzelman, M.Ed. is currently a doctoral candidate at the University of Toledo. She also works as a Graduate Assistant there, where she teaches health courses to undergraduate students. Her research interests include: adolescent health, drugs, sexuality, and the health of siblings of individuals with I/DD. Before coming to Toledo, Erin lived and worked in Virginia as a middle school Health and Physical Education teacher. While in Virginia, she received her Masters of Education at George Mason University in Curriculum and Instruction, with a certification in Physical Education. Erin would donate her planning period once a week to go to the special education classroom to teach about health topics. Erin is originally from Pennsylvania, where she earned her Bachelor Degree in Health and Physical Education with a minor in Adapted Physical Activity from Slippery Rock University. She is the middle of three siblings, her older sister has an intellectual disability and her younger brother is a police officer for the city of Pittsburgh, PA.
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.
Ohio Chapter Representative
Barb Sapharas
Barbara Sapharas is on the Board of Ohio SIBS and lives in the Cleveland, Ohio area. She has worked in the field of developmental disabilities for over 37 years. She is a Speech Language Pathologist and a Mentor Trainer in the Learning Community for Person Centered Practices. Her youngest brother, Nick, had cerebral palsy and needed total supports. She supported him through his adulthood and as he learned that he was terminally ill. She used the person centered tools to enhance his quality of life and support his right to make informed decisions throughout his life, including at the end of his life.
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
Sibling Support Project Representative
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 450 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.
Self Advocates Becoming Empowered (SABE) Representative
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.
SABE Co-Representative
Amira Rasheed
Amira Rasheed is a strong self-advocate and represents Self-Advocates Becoming Empowered (SABE) on the SLN Board. She is employed with the Arc of New Mexico as a self-advocacy assistant in the advocacy program. Amira recent graduated from Partners in Policymaking and has done work on legislative policy. She is involved in various advocacy groups including New Mexico Youth Leaders and as the President of her People First chapter. Amira represents Region 3 on the Board of SABE and is a co-leader for the NM State Team of Allies in Self-advocacy group. Amira is a senior self-advocate trainer/DDSD Trainer. She co-facilitates trainings on various topics including providing train-the-trainers in Rights and Advocacy, Advocacy 101, and Person Centered Planning. Amira also participated in the Field Produce Quote Unquote Public access TV and was certified to be a filed producer. She is the Innovative Health at Home President of the Board of Directors. Amira graduated from the University of New Mexico with a BA in Chemistry and a BS in Psychology. She was very involved in extracurricular activities at UNM including being an active member of the Student Muslim Association Member, Vice President of Friends of Children with Disabilities, and volunteered at Carrie Tingly Hospital during focus groups for parents of children with CP. Amira serves on the Developmental Disability Planning Counsel in NM. She has been awarded for her self-advocacy work with The Bob Thomas Advocacy Award. Amira is the middle of a sibship of five and her whole family has supported her to live a self-determined life.
