At its core, self-direction is about people having choice and control over their own lives. By extension, we believe the policies that shape self-direction programs should be guided by those with lived experience. In 2021 we convened a Participant Council to better inform our work to advance self-direction.
Applied Self-Direction's Participant Council includes participants and family members from a range of self-direction programs across the country. We strive to ensure this group represents a wide array of approaches to self-direction nationwide We elevate the perspectives raised by our Participant Council members across our work with states, financial management services (FMS) entities, managed care organizations (MCOs), federal agencies, elected officials, and other stakeholders.
No one understands how self-direction operates in day-to-day life better than the people who rely on these programs to maintain their independence at home. The guidance and recommendations provided by the Participant Council help influence our work at Applied Self-Direction and the design and implementation of self-direction on a national scale.
We are proud to introduce our Participant Council Members:
Ryan Donnelly is an Advocacy Coordinator with Granite State Independent Living based in Concord, New Hampshire. Ryan helps to track legislation at the state level and keeps fellow advocates informed on what’s happening in the Granite State. His work in advocacy often brings him before New Hampshire’s state legislature to testify on bills that will impact the disability community in his state. Born with Osteogenesis Imperfecta, Ryan relies upon self-directed personal care services to maintain his independence. Ryan holds a Bachelor’s degree in English from the University of New Hampshire. To learn more about Ryan's story, click here.
Maggie Hoffman has worked for 30+ years to strengthen and support families of children and adults with special health care needs, encompassing children and adults with developmental, mental health, and medical disabilities. Retired, Maggie advocates to include self-directed services in Maine’s menu of Home and Community Based Service options for people with Intellectual/Developmental Disabilities/autism, including her adult son. To learn more about Maggie's son Jake's story, view his video here.
Tim Jin is a disability rights advocate with cerebral palsy. He is the Assistant Director of Communication Rights for Disability Voices United, an organization focused on improving education and services for those with developmental disabilities. Jin advocates for improving the accessibility of technology-aided communication for those with speech-related disabilities.
Jin has been a member of boards for organizations such as Ability Central Philanthropy, CommunicationFIRST, and the Self-Determination Program Local Advisory Committee for the Regional Center of Orange County.
Jin has been using an augmentative and alternative communication (AAC) device since elementary school. He graduated from California State University, Long Beach, with a bachelor’s degree in speech communication.
Veronica McGee is the parent of 21-year-old Kyle who has been self-directing his IDD waiver since January 2020. She is his Employer Of Record representative. She is also involved in two other advocacy organizations and is the President of the Alabama TASH chapter. Veronica and Kyle have attended and presented at four TASH conferences. She is a project manager for PeopleFirst of Alabama, which is an approved vendor for the Alabama Department of Mental Health Community Waiver Program (CWP). They will be providing two services-- Peer Specialists and Family Navigators for families statewide who chose these CWP services. Veronica, her husband Steve, and their three other children live in Birmingham, Alabama.
Julie Reiskin is the Executive Director of the Colorado Cross-Disability Coalition (CCDC), which is a statewide social justice disability advocacy organization. She is passionate about self-direction and actively involved in the Colorado program as an advocate, client, family member, and authorized representative.
Karen Scallan is a Medicaid Advocate and owner of Special Needs & Parent Support Services of LA, LLC (SNAPSSLa). She began advocating for children with disabilities and complex care needs with the birth of her son in 2001. After working as an education advocate, she began advocating for Medicaid recipients with disabilities and complex care needs in 2007 as Program Director of the Louisiana Family to Family Health Information Center. In 2013, she left that position to open her own agency (SNAPSSLa) to continue that work, contracting with Louisiana Medicaid. She is a member of the Louisiana Office for Citizens with Developmental Disabilities Stakeholder Work Group advising on a redesign of the state developmental disability waiver system; Self-Directed Waiver Services Stakeholder workgroup; Task Force for Dental Services for Adults with Developmental Disabilities, and Act 421/TEFRA Stakeholder group. She serves on the Governor’s Advisory Council on Disability Affairs and is a Board Member of Trach Mommas of Louisiana. She previously served on Governor Bobby Jindal’s Managed Long-term Supports and Services Advisory Group and spent over 20 years as a paralegal working for the largest law firm in Louisiana.
Nathan "Nate" Turner has advocated for the civil rights of Ohioans for more than 15 years. He shares his lived experience as a black man with cerebral palsy working remotely from his home near Toledo as the Advocacy Policy Specialist for the Ohio Department of Developmental Disabilities. Nate recently completed a SARTAC policy fellowship with the Ohio Self-Determination Association dedicated to rights assertiveness and self-direction. In his free time, Nate enjoys trying innovative technologies, eating his favorite Italian food recipes, and experiencing the latest in books, TV shows, and movies.
Ed Underwood is retired from a 35-year career in agricultural lending, business consultation, tax planning, appraisal, business analysis, project management, relationship management, and systems implementation. Ed is happy to now have one focus, which is the continuing care and advocacy for his 23-year-old son who has intractable epilepsy and an intellectual/developmental disability. Ed and John squeeze the most out of traditional services, while optimizing the potential of self-direction.
Peek at “John’s Dream Ice Cream” on Facebook or Instagram for just one piece of the puzzle. To learn more about John's story, click here.
Keith Williams has a lifelong physical disability and has been directing his own care since 1986. A resident of PA, he's the Advocacy & Outreach Coordinator for My Center for Independent Living (MyCIL).
Sawsan Zakaria is 29 years old and lives in an apartment independently in Los Angeles, CA. Sawsan hires and trains her own caregivers funded by the state to complete daily tasks. She was born and raised in Chicago and diagnosed with spinal muscular atrophy at 15 months old.
Sawsan works in technology and real estate and volunteers for a summer camp for adults with and without physical disabilities. She moved to Los Angeles to pursue acting and modeling to help change the way Hollywood and society misrepresent people with disabilities.
Pamela Zotynia has 30+ years of experience working in human services supporting people with disabilities to self-direct their lives. She is currently employed as the Director-Participant Directed Supports at Values Into Action in Pennsylvania. She shares her home with her 36-year-old son, Robert, who chose to self-direct his supports and services. Learn more about Pam and Robert's story here.
If you are interested to learn more about the Participant Council, please contact Molly Morris at email@example.com