The people that rock

Our Board Members
Board member photo of Caitlin Bailey
Caitlin Bailey

Board Secretary
Co-Founder of The Alliance

cebailey@udel.edu

Caitlin is the Director of Research and Evaluation at the National Leadership Consortium on Developmental Disabilities at the University of Delaware. The work of National Leadership Consortium supports the next generation of leaders to have the skills, knowledge and values needed to transform services and systems to ensure that people with disabilities direct their supports and lives. Her work primarily focuses on collaborative research in leadership, organizational sustainability, best practices in services and supports and policy decision-making processes in the disabilities sector. In her role, Caitlin has the opportunity to design, conduct and analyze research and evaluations that are led by people who are most affected by their outcomes: people with disabilities, their families and the people who work for them. Caitlin is a proud member of the Board of Directors for the National Alliance for Direct Support Professionals, the national organization committed to elevating the status of direct support professionals by improving practice standards, promoting system reform, and advancing their knowledge, skills and values. Caitlin is also honored to be a founder of the Alliance for Citizen Directed Supports.

People are ready for something different, something better. In order to advocate for the rights and citizenship of all people, we have to learn from and celebrate those who refuse to stand for anything less than inclusion and equal rights for all people. I am so honored to be a part of the Alliance for Citizen Directed Supports as we offer a home for those committed to improving services and supports for people with disabilities to share ideas, innovations, strategies and lessons learned to continue to build communities that value disability and the rights and dignity of all its members.

Marian Frattarola Saulino, a White middle-aged woman smiling
Marian Frattarola-Saulino

Board Chair
Co-Founder of The Alliance

marians@viapa.org

Marian works to support the rights of all people, promoting inclusion, and coproducing sustainable support systems alongside people with disabilities, their families and allies. She has worked in direct support of people as well as a group home supervisor, service director, supports broker and executive director. These experiences have enabled her to collaborate with, and learn from people with disabilities and their families, and to apply those lessons across teams, organizations and systems. Marian serves as CEO of Values Into Action, a growing network of organizations she created with her husband, Paul Saulino in 2005. The organizations offer supports and services to people exclusively in their own homes and communities and partner with people, their families and other chosen allies to design, deliver and evaluate services. A leader in participant/self-directed system, Marian leads efforts to expand the scale and scope of services led by people themselves, with the support they identify and define. Marian currently serves as the Board Chair of the Collaborative for Citizen Directed Supports-New Jersey, a cause-based membership association, that like the Alliance, is dedicated to upholding the principles of self-agency and determination. She holds an MSW from Temple University, with a specialization in social administration and planning.

Nothing is more important to me than leaving the world a bit better than I have found it, especially for our three daughters. My contribution to this change is to work alongside allies, colleagues and friends to make it a more just and inclusive world, where all of us are acknowledged and welcomed for who we are and what we bring. The Alliance provides a forum for those of us impatient with the pace and direction of change in the disability services community, to challenge and disrupt, and ultimately change the way in which people’s rights are honored and upheld.

Board member photo of Nancy Weiss
Nancy Weiss

Board Treasurer
Co-Founder of The Alliance

nancyrobinweiss@gmail.com

Pamela Harvey Photography

Nancy is the Director of Disability Initiatives and a member of the faculty of the College of Health Sciences at the University of Delaware. She directs the University’s Interdisciplinary Master’s Program in Leadership in Disability Services and is the Director of the National Leadership Consortium on Developmental Disabilities at the University of Delaware. Ms. Weiss has more than 40 years of experience in the field of intellectual and developmental disabilities. She has worked extensively providing advocacy, community living and positive behavioral supports. She was the former Executive Director of TASH, an international advocacy association committed to the full inclusion of people with disabilities. The consistent theme of Ms. Weiss’s work has been the promotion of disability supports and policies that assure communities, schools, and workplaces that include, value, engage and challenge people with disabilities and that guarantee that individuals with disabilities are treated humanely and have access to the full range of opportunities available to all citizens.

In my work through the National Leadership Consortium on Developmental Disabilities I have realized that there is no organizational home for people committed to self-directed lives and the shift from congregate services (those provided to people with disabilities in group homes, day programs and sheltered workshops) to those offering real, full, meaningful lives that respond to the wants and needs of each person. I am saddened by how little supports for people with disabilities have changed since I began to work in this field in the 70s. I like the idea of an organization that has as members people with disabilities, family members and people who work in the field united behind a common vision. I look forward to The Alliance serving as a catalyst toward making quality lives and meaningful community inclusion a reality for all.

These officers are joined by the additional members of the Board of Directors:

Board member photo of Lydia x.z.brown
Lydia X.Z. Brown

lydia@autistichoya.com

Photo by Adam Glanzan/Northeastern University

Lydia is a disabled advocate, writer, organizer, educator, speaker, and attorney. They are the Policy Counsel at the Center for Democracy and Technology and an adjunct lecturer in disability studies in Georgetown University’s Department of English. Lydia is the founder and director of the Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment. They are also the Policy and Advocacy Associate for the Autistic Women and Nonbinary Network.

Lydia’s work has largely focused on violence against multiply-marginalized disabled people, especially institutionalization, incarceration, and policing. Lydia has nearly a decade of experience as a leader, thinker, and change-agent within the autistic self-advocacy and neurodiversity movements. They have worked to advance transformative change through organizing in the streets, writing legislation, conducting anti-ableism workshops, testifying at regulatory and policy hearings, and disrupting institutional complacency everywhere from the academy to state agencies and the nonprofit-industrial complex. They are the lead editor and visionary behind All the Weight of Our Dreams, the first-ever anthology of writings and artwork by autistic people of color.

In their previous professional role, Lydia was the Institute Associate for Disability Rights and Algorithmic Fairness at Georgetown Law’s Institute for Tech Law and Policy. Prior to that, they were Justice Catalyst Legal Fellow at the Bazelon Center for Mental Health Law, where they worked on defending and advancing the educational civil rights of Maryland students with psychosocial, intellectual, and developmental disabilities facing various forms of disproportionate discipline, restraint and seclusion, and school pushout. As a Visiting Lecturer at Tufts University’s Experimental College, they designed and taught a course on critical disability theory, public policy, and intersectional social movements. Lydia is a past Holley Law Fellow at the National LGBTQ Task Force, Patricia Morrissey Disability Policy Fellow at the Institute for Educational Leadership, and Chairperson of the Massachusetts Developmental Disabilities Council.

They have received honors from many organizations, including the White House, Washington Peace Center, National Council on Independent Living, Disability Policy Consortium of Massachusetts, American Association of People with Disabilities, and Society for Disability Studies. Their writing appears in numerous community and scholarly publications, including Religion, Disability, and Interpersonal Violence; Addressing Ableism: Philosophical Questions via Disability Studies; QDA: A Queer Disability Anthology; Torture in Healthcare Settings; and All In Your Head: Queerness, Neurodiversity, & Disability Zine.

Anita Cameron (she/her/hers) began working as Not Dead Yet’s Director of Minority Outreach in January 2017. She has met with national and state policy makers and written persuasively about opposition to a public policy of assisted suicide from the perspective of communities of color who experience disparities in access to healthcare. 

From 2004-2006, she worked at the American Association of People with Disabilities (AAPD) in Washington, DC, as the DC Metro Disability Vote Organizer, working with the Board of Elections and Ethics to increase voting access and get disabled people to serve as poll workers and election judges. 

Anita worked as Systems Advocate for the Center for Disability Rights in Rochester, NY, from 2006-2010, addressing a broad range of disability rights and access issues with advocates and lawmakers at the local, state and national levels.

 

In 2004, while in Washington, DC, Anita trained to become a CERT (Community Emergency Response Team) member. In 2008, she helped to form the first CERT class consisting of people with disabilities in Rochester, New York. After joining Denver CERT in 2011, Anita became the first visually impaired CERT instructor for the State of Colorado, and in 2013, became a CERT Program Manager for the State. She has assisted in numerous exercises and real-world incidents with Denver CERT, including serving as a radio communications operator during the Colorado Flood of 2013 and remotely assisting survivors of Hurricanes Harvey and Irma in disaster relief in 2017. Anita has written extensively, for numerous agencies and publications, on emergency and disaster preparedness for people with disabilities, as well as the role and participation of the disability community in emergency management.

Since 1986, Anita has volunteered with ADAPT, a national, grassroots disability rights organization. In 34 years of involvement, she has risen to a position of national leadership and has been arrested 139 times for nonviolent civil disobedience fighting for the civil rights of all disabled folks. She was invited to the White House on two occasions, has met three sitting U.S. Presidents and two Vice-Presidents, helped to organize a national march, and was published in “Voices of A People’s History of the United States”, by the late, award-winning historian, Howard Zinn.

As a Black Disabled Lesbian, Anita has dealt with racism, sexism, ableism, and homophobia – sometimes combinations of these. She has used her experience of discrimination and her unique intersectional perspective to promote understanding among different groups of disenfranchised people and increase social justice among those fighting for social justice. She worked to get nondiscrimination ordinances for the LGBTQIA2S+ community in Chicago, IL and Denver, CO. She helped organize the first Pride March in Colorado Springs, Colorado and served as the national representative for the disability community at the 1993 March on Washington. 

In 2017, the Autistic Self Advocacy Network honored Anita with the 2017 Service to the Self Advocacy Movement award for her national advocacy work, and in 2018, Anita received the Lead On award for her work with ADAPT. 

Anita also serves on the National Disability Leadership Alliance’s Steering Committee, as well as it’s Racism Taskforce, and co-Chaired the Intersectional Justice Committee for ADAPT. 

She holds a degree in Biology from University of Illinois at Chicago Circle and a degree in Computer Information Systems from Community College of Denver.

Anita lives in Rochester, New York, with her wife, Lisa, and cats, JoJo and Nemo.

Lateef McLeod is building his career as a writer and a scholar. He has earned a BA in English from UC Berkeley and an MFA in Creative Writing from Mills College. He is four years into the Anthropology and Social Change Doctoral program at California Institute for Integral Studies in San Francisco. He published his first poetry book entitled A Declaration of A Body Of Love in 2010 chronicling his life as a Black man with a disability and tackling various topics on family, dating, religion, spirituality, his national heritage and sexuality.

He currently is writing a novel tentatively entitled The Third Eye Is Crying. He also published another poetry book entitled Whispers of Krip Love, Shouts of Krip Revolution in 2020. He was in the 2007 and 2016 annual theater performances of Sins Invalid and also their artist-in-residence performance in 2011 entitled Residence Alien. In 2019 he started a podcast entitled Black Disabled Men Talk with co-hosts Leroy Moore, Keith Jones, and Ottis Smith. The podcast website is www.Blackdisabledmentalk.com. More of his writings are available on his website LateefhMcLeod.com and his Huffington Post blog. Some of his community service work includes being the co-chair of the Persons with Disabilities Ministry at Allen Temple Baptist Church and being the vice president of the Leadership committee and executive board member of the International Society for Augmentative and Alternative Communication.

I believe strongly that disabled people need to advocate for themselves for the change they want to see in their community and society. I was able to execute on these values in my position at the International Society for Augmentative Alternative Communication as the vice president of their Leadership committee for people who use AAC.  In that position my committee and I were able to devise a year-long mentoring program for a selection of young adults who use AAC who resided in a couple different countries.

I bring that same passion and zeal to the board of The Alliance for Citizen Directed Supports, along with my insights from self-advocacy, and perspective as a person who uses AAC and as a Black man with cerebral palsy. I wish to highlight the experiences of people of color with disabilities in this country.”

Kyla Mundwiller (she/her/hers) is the Director of Self-Determination for the Missouri Division of Developmental Disabilities. There she is responsible for the self-directed supports program, self-advocacy, and other self-determination efforts.  During her tenure number of individual’s self-directed supports has had a growth rate of 829%.  Kyla has worked closely with advocates to create trainings and publications which promote self-determination.   

She served on Ohio Self-Determination Association (OSDA) board for 5 years. Since 2011 she has served on the board of the Missouri American Association of Intellectual and Developmental Disabilities (MOAAIDD); during her tenure she served twice as president.    

Kyla has been recognized for her public service on several occasions: 

  • First recipient of the “Outstanding Leadership of Self Directed Program Design” awarded by Applied Self Direction, the technical assistance, training, and membership arm of the National Resource Center for Participant-Directed Services (NRCPDS).     
  • Outstanding Public Service award from the Franklin County Court of Common Pleas for her work with juveniles in Ohio. 
  • Recognized by the Ohio Governor as Direct Support Professional of the Year for her work in self-employment with individuals with disabilities.   

Kyla received her master’s degree in special education with an emphasis in adult developmental disability services from Ohio University Athens, and her bachelor’s degree in Criminal Justice from Ohio Dominican College. 

 

When I first started working in the field of developmental disabilities I worked at a sheltered workshop and repeatedly saw things that made me think ‘this does not make sense.’ Several years later I listen to a professor talk about self-determination. I remember getting an overwhelming feeling that this was the first time that I heard something that made sense. Since that time I have been involved with every effort that I could to promote self-determination and systems change. Many times I have felt alone or that I was going against the grain. During one of the early Applied Self-direction webinars, I got this same overwhelming feeling and thought these are people who make sense and I was not alone. 

Priya Penner, smiling woman of color with black hair and red blazer
Priya Penner

PriyaPenner@citizendirectedsupports.org

Priya Penner is a 22 year-old multiply-disabled queer activist of color, with grassroots organizing experience on the local, state, and national levels. Hailing from snowy Upstate NY, Priya joined the Partnership for Inclusive Disaster Strategies in June of 2020 to help ensure those in marginalized communities, especially those who are multiply-marginalized, are heard within the disaster relief field.

Priya learned about disability pride and disability rights at a very young age from her disabled adopted mother. She spent several years using her knowledge of the Independent Living philosophy to organize on the grassroots level with national disability rights organization, ADAPT, as well as on the local collegiate level. She also worked at a local Center for Independent Living (CIL) fight for the freedom of all persons with disabilities.

In her nonexistent free time, Priya loves to go on car trips with her fiancée, play with her two cats, and yell obscenities at her TV when playing video games.

I am excited to serve on the Alliance Board because I want to work with other board members to ensure all disabled folks, including the multiply-marginalized, have the right to live independently.

Amanda Rich middle-age white woman with short hair wearing a loose blue blouse smiling
Amanda Rich

Amanda@citizendirectedsupports.org

Pamela Harvey Photography

Amanda is currently an associate professor of Human Services at York College of Pennsylvania where she teaches course work related to direct practice, administration and public policy impacting human service organizations. She is the director of the Institute for Social Healing. Her work is rooted in the belief that human services have the potential to help make our communities more inclusive, diverse, fairer and stronger. She has a master’s degree in Applied Behavior Analysis and Special Education from the Teacher’s College at Columbia University and a doctoral degree in Human Development and Family Studies from the University of Delaware. Amanda got introduced to the field of human services and disability supports through her families’ advocacy with and for her uncle, who has developmental disabilities. She formally began her career in therapeutic recreation and has worked as a direct support professional, personal care attendant, program manager and special education teacher. Currently her professional work focuses on the structural challenges faced by marginalized families, strategies they use to fight for change, community-based and citizen directed support services, trauma-informed support systems, self-compassion and the development of the human service workforce. Amanda recently has published a book entitled Standing Together and Finding a Voice Apart: Advocating for Intellectual Disability Rights.

I am honored to be a part of the development of the Alliance for Citizen Directed Supports. I believe that support services have the potential, not only to help people live freer and valued lives of their choosing, but also to help shape the way our communities understand diversity, interdependence, and disability for the better. I think this can only happen when services are delivered in a way that truly respects that people have the right and empowers people to exert meaningful choice and control in their lives and build freely given human relationships. I believe the Alliance for Citizen Directed Supports is an important vehicle to move this work forward.

Board member photo of David (DJ) Savarese
David (DJ) Savarese

djsavarese@citizendirectedsupports.org

Pamela Harvey Photography

David works full-time as an Open Society Foundations/ Human Rights Initiative Youth Fellow, working to make literacy-based education, communication, and inclusive lives a reality for all nonspeaking people through artful advocacy, community organizing, and teaching (www.listen2us.net). He is also the co-producer of the Peabody award-winning, Emmy-nominated documentary film Deej: Inclusion shouldn’t be a lottery, which works to unearth the discrepancies between the insider and outsider perspectives of my lived experience as an alternatively communicating autistic. David graduated Phi Beta Kappa from Oberlin College in May 2017 with a double major in Anthropology and Creative Writing and has a published poems and prose in The Iowa Review, Seneca Review, Prospect, Disability Studies Quarterly, and wordgathering.com. His lyric essay “Passive Plants,” published in The Iowa Review, was nominated for a Pushcart Prize. See more at www.djsavarese.com.

I most certainly don’t have the answers, but I think I bring to the table an optimism, an internal commitment to self-determination and an awareness of the life demands and lived experience of an alternatively communicating, neurodiverse adult. I believe quite passionately that progress can be made if we embrace interdependence over the ableist mirage of self-reliance and independence.

Edward Willard was the director of Advocacy Supports at the Developmental Disabilities Administration (DDA). He has personal knowledge of the delivery system as a person with significant Cerebral Palsy, having experienced the full range of services available to people with disabilities. Edward has over 30 years of experience in the disability field. The majority of his work has been developing and conducting trainings about a variety of subjects related to people with disabilities. He worked at the Maryland Department of Disabilities as Director of Peer-to-Peer outreach. He started working at DDA coordinating training and advocacy for people receiving services in the New Directions Waiver. Then he became the statewide coordinator for the End the Wait NOW!! campaign for people on the waiting list in need of services. In 2013 he returned to DDA as an independent advocate for self-directed services. In October 2014 Mr. Willard was promoted to Director of Advocacy Supports at DDA. Outside of his responsibilities at DDA he was recently appointed to The Maryland Commission of Disabilities. During Willard’s 30-year career he co-founded 3 organizations in Texas. The most notable is Everychild of Texas, which puts children with disabilities into homes with families instead of institutions. He is committed to supporting people with disabilities to have a life of their choosingHe refers to his seven nieces and nephews as his “children” and takes great pride in them. Now semi-retired, Edward plans on being on the high seas on cruise ships regularly.

With the coronavirus pandemic, now, more than ever, national policy MUST BE to support people in moving out of institutions of any size, and to fund community supports for all.  I am proud to be a board member of an organization taking a lead globally in highly possibly closing all types and sizes of facilities. 

Subscribe to Our Newsletter

Sign up for our email list and we'll keep you up-to-date with the latest news, events, and resources relevant to the self-direction community.

Our updates will help you overcome challenges to self-direction through personal insights and stories from our members. You'll also have opportunities to advocate for and support expanding self-direction for all.