Our Team NYADD New York Alliance for Developmental Disabilities

Our Team

Katy Faivre serves as NYADD’s Lead Statewide Coordinator, where she works with families and advocates across New York to advance policy reforms and strengthen systems that support people with developmental disabilities. Since joining NYADD during the COVID-19 pandemic, she has played an active role in policy and legislative advocacy, helping elevate family perspectives in statewide discussions affecting services, oversight, and accountability.

Katy is deeply engaged in advocacy and leadership across the developmental disabilities’ community. She serves on the Board of Directors for The Arc Mid-Hudson and chairs the Standing Committee on Advocacy and Oversight of State-Operated Homes. She is also active with The Arc of New York, is a member of AHRC Nassau, and participates in several statewide advisory groups, including the New York State Council on Developmental Disabilities Caucus, OPWDD Family Stakeholders, and the Care Design Individual and Family Council.

A lifelong family advocate, Katy’s work is informed by her experience as the sister of a 72-year-old man with cerebral palsy who has lived in a group home for more than 30 years. This perspective drives her commitment to person-centered, high-quality care and to improving accountability and oversight within systems such as the New York State Justice Center and OPWDD quality assurance processes.

In her local community, Katy continues to work directly with individuals with disabilities as a Special Olympics coach in Northern Westchester and Putnam County.

Katy holds a Master’s degree in Public Administration in Health Care and a Master’s degree in Special Education.

Steve Gonyea serves as NYADD’s Statewide Disability Lead and was appointed Statewide Chair of NCSA in August 2025. In this role, he works to advance disability advocacy and strengthen collaboration among families, service providers, and policymakers across New York.

Steve is the founder and co-host of the Finding Common Ground advocacy podcast, which brings together advocates, professionals, and families to discuss solutions and opportunities within the disability community. He also serves as a council member of Healthy Minds Healthy Kids, partnering with national film producer Michael Skinner, and is a board member of WorthDoing.org, a national 501(c)(3) nonprofit focused on developing innovative disability solutions across the country.

Steve is actively engaged in family and community leadership. He serves on the Families Together and NYS OCFS Family Advisory Board and is the Board Treasurer for the UCD/Veterans Outreach Center. He previously served as a Board Member, Board President, and pro tempore Executive Director of the Family Advocacy Center.

His advocacy is grounded in lived experience. Steve is a disability parent, adoptive disability parent, and autism parent, and has served for many years as a therapeutic foster parent, respite provider, juvenile system respite parent, and former State Family Care provider. Through both his professional work and personal experience, Steve remains committed to strengthening supports, services, and opportunities for individuals with disabilities and the families who care for them.

Steve has also been featured on the Dadvocating Podcast with Simcha Weinstein, a fellow NYADD State Lead.

Peter Zummo is a State Lead Member of NYADD, from Region 1, where he works alongside families and advocates to advance policies and strengthen supports for individuals with intellectual and developmental disabilities across New York.

Peter’s advocacy is deeply rooted in lived experience as the parent of a 29-year-old son who is non-speaking and autistic. For more than 20 years, he has been actively engaged in advocacy on behalf of his son and the broader I/DD community, working to elevate family voices and promote meaningful supports, services, and opportunities.

Before focusing full time on advocacy, Peter built a career as a serial entrepreneur, founding three businesses. He also practiced as an attorney for four years, bringing legal insight and strategic perspective to his work in systems advocacy.

Peter joined NYADD in May 2020 and has remained committed to strengthening collaboration among families, advocates, and policymakers to improve outcomes for people with intellectual and developmental disabilities.

Simcha Weinstein serves as Community Engagement and Inclusion Coordinator at Families Together in New York State, where he leads statewide trainings grounded in lived experience, family voice, and practical systems change. He also serves as a State Lead with the New York Alliance for Developmental Disabilities (NYADD) and is a member of the New York State Council on Developmental Disabilities.

A proud “Dadvocate,” author, speaker, and podcaster, Simcha draws on personal experience to advance disability rights, mental health awareness, peer support, and inclusive communities. His work focuses on supporting self-advocates and families navigating complex systems while helping transform lived experience into meaningful access and systems change.

Simcha is the founder of the Jewish Autism Network, a grassroots initiative focused on community conversations that increase understanding, accessibility, and support for autistic individuals and their families.

In addition to his advocacy work, Simcha founded Chabad of Pratt Institute and Clinton Hill and has long served on the clergy staff at Pratt Institute, where he has helped build inclusive community connections.

Known for his warm and approachable style, Simcha speaks and writes widely on advocacy and inclusion. His work has been featured by CNN, NPR, and major publications including The New York Times, The Miami Herald, and The Guardian. He lives with his family in Brooklyn, bringing humor, heart, and a deep commitment to connection into all of his work.

Obaida Omar is the Program Manager for the Refugee Health Promotion Program at Catholic Charities Family & Community Services in Rochester, New York, where she works to support families, promote equity, and strengthen community resources for underserved populations. She is also an active member of the NYADD community, bringing her professional expertise and personal experience to statewide advocacy for individuals with intellectual and developmental disabilities.

Obaida began her career as a Health Case Manager, supporting individuals with complex medical needs and helping families navigate healthcare systems and community resources.

She served for nine years on the Board of Directors of Starbridge and remains actively engaged in community outreach that promotes equity, inclusion, and quality of life for people with developmental disabilities.

As the mother of an adult child with autism, Obaida’s advocacy is informed by lived experience. Her personal insight strengthens her commitment to advancing the rights, dignity, and opportunities of individuals with intellectual and developmental disabilities, while bridging professional expertise with community leadership.

Obaida holds a bachelor’s degree in social work from SUNY Brockport.

Rita Jones-Safian serves with the New York Alliance for Developmental Disabilities (NYADD) on Long Island, where she works to amplify the voices of families and individuals across New York State and strengthen advocacy within the intellectual and developmental disabilities community.

Rita brings more than 30 years of experience in sales, marketing, and business development, with a career that began in the magazine industry in New York City. She contributed to publications including Ladies’ Home Journal, Homeowners, and LEADERS Magazine before transitioning into sales leadership.

After the passing of her father, a renowned boxing manager in the 1980s, Rita joined Yellow Book USA, where she quickly became a top-performing Account Executive. She later spent the majority of her career with Clipper Magazine, where she excelled in sales leadership, business development, and team mentorship, consistently ranking among the company’s top performers nationwide before retiring in 2024.

Rita’s advocacy is deeply personal. After her son Daniel was diagnosed with autism at 18 months, she became actively involved in advancing disability awareness and support. She has volunteered and fundraised for several nonprofit organizations, including the Developmental Disabilities Institute (DDI), The Elija Foundation, and Autism United, helping generate significant support and resources for individuals with intellectual and developmental disabilities.

Today, through her work with NYADD, Rita focuses on strengthening advocacy efforts, engaging with policymakers and agencies, and promoting transparency, services, and improved outcomes for individuals with disabilities and their families. She continues to champion legislative priorities, mentor emerging advocates, and build stronger networks of support across New York State.

Renee DeFilippis is a Regional Lead with the New York Alliance for Developmental Disabilities (NYADD) and a dedicated mental health professional committed to advancing services and protections for individuals with developmental disabilities.

Renee was one of the founding members of NYADD, helping build the organization’s early advocacy efforts focused on strengthening services, funding, and safeguards for some of the most vulnerable individuals in the system.

Her advocacy is deeply personal. As the aunt of two young adults with autism, Renee has long championed the rights, safety, and well-being of individuals with developmental disabilities and their families.

Throughout her work with NYADD, she has been a strong voice for greater transparency and accountability, including advocating for the use of cameras in residential settings to help ensure safety and oversight.

Outside of her professional and advocacy work, Renee enjoys capturing the natural beauty of Long Island through photography, bringing the same passion and perspective she applies to her advocacy into her creative pursuits.

Her compassion and commitment to supporting individuals and families guide every aspect of her work in both mental health and disability advocacy.

Shannon LaVigne serves as Legislative Liaison for NYADD and is a dedicated disability and special needs advocate, supporting children and adults with disabilities in accessing the services and programming they need to live full, supported lives. Her advocacy is informed by lived experience, having navigated complex medical and educational systems to secure services for her own children, which inspired her to support other families facing similar challenges.

Shannon is also the co-founder of The Voices of the Medically Fragile of New York (VMFNY), a grassroots coalition dedicated to amplifying the voices of individuals with complex needs and the families who support them in policy and systems decision-making.

She serves as a Parent Member of her district’s Special Education Parent Advisory Council (SEPAC), advocating for equity and inclusion for students with disabilities and the educators who support them.

Shannon holds a bachelor’s degree from The College of Saint Rose and has completed public policy studies through Cornell University, along with advocacy and inclusion training through The Arc.

From schools to state agencies, Shannon remains committed to advancing equity, dignity, and access so that every person, regardless of medical or developmental needs, has the opportunity to thrive.

Jillian Eisloeffel serves as a Regional Lead for NYADD and is a dedicated parent advocate, writer, and community organizer based in Orange County, New York. She is the founder of Bobby’s World – Profound Autism Advocacy, a platform grounded in lived experience that centers individuals with profound autism and high support needs.

Jillian’s advocacy is deeply informed by her experience as the mother of Bob, who has profound autism, shaping her work around caregiving, safety planning, medical complexity, and navigating systems that often fail the most vulnerable.

Through Bobby’s World, Jillian works to elevate honest conversations about severe and profound autism, challenge one-size-fits-all approaches, and advocate for meaningful policy, housing, and care solutions. She collaborates with families, organizations, and legislators to push for recognition, accountability, and safeguards that protect individuals across the lifespan.

As a NYADD Regional Lead, Jillian is committed to bridging lived experience and policy, ensuring that the voices of families with the highest needs are respected, heard, and impossible to ignore.

Linda Molina serves as NYADD Region 3 Lead and as an OPWDD Independent Support Broker, working alongside families, providers, and policymakers to improve access, funding, and system responsiveness across New York State. She is also the co-founder of Voices of the Medically Fragile of New York (VMFNY), bringing both professional expertise and lived experience to her advocacy and community leadership.

Linda holds a BA in Early Childhood/Special Education and has extensive professional experience coordinating services for children with complex medical needs. She previously worked in Charlotte, North Carolina as an Early Intervention Bilingual Senior Case Coordinator and later served in New York as a Care Manager for Children’s Health Homes, overseeing integrated care for children with medically complex conditions.

As the mother of a medically fragile daughter and a medically complex son, Linda’s advocacy is grounded in lived experience. She is deeply committed to advancing services and supports for families navigating complex care systems. Fluent in English and Spanish, she provides culturally responsive support and helps bridge communication gaps for diverse communities.

Susan Havko serves as a Regional Lead for NYADD and is a dedicated advocate for individuals with autism and their families. She works to ensure that families have a voice in decisions affecting services, policy, and care, while supporting access to meaningful opportunities for individuals with developmental disabilities.

Susan’s advocacy is deeply informed by lived experience as the mother of a 36-year-old son with challenging autism, who currently resides in a certified group home. Over the years, she coordinated her son’s at-home educational program, hiring and training teachers guided by Rutgers University. Her innovative approach drew other parents to observe, inspiring community engagement and advocacy initiatives.

Susan co-hosted The Luncheon for Mothers of Children with Autism for 15 years and, together with her husband and another family, successfully convinced their school district to open the first ABA classroom in their area. Professionally, she has served as an Early Intervention Service Coordinator, EI ABA instructor, and home instructor for children with autism in the Newburgh School District. She has also presented at conferences and spoken to teacher groups, sharing insights from her experience.

In addition, Susan worked as a community liaison for the Orange County System of Care, connecting volunteers with youth experiencing mental health challenges and providing supportive programs. Through her advocacy, she has navigated mental health hospitalizations, complex behavioral challenges, and medication management, using these experiences to guide and support other families during critical times.

Susan remains committed to ensuring families have a seat at every table that shapes policy for their loved ones, promoting person-centered quality care with effective safeguards, and creating opportunities for individuals to engage meaningfully in their communities.

Heather Walters serves as a Lead for NYADD, bringing more than 18 years of lived experience, professional expertise, and advocacy to her work on behalf of individuals with developmental disabilities and their families. She also serves as a Regional Coordinator for Parent to Parent of NYS in the Upstate East region, strengthening family voice, building inclusive communities, and improving access to supports and services across New York State.

Heather is the proud mother of three children on the autism spectrum, including her daughter Hannah, a graduate of a residential school program who now lives in a state-operated residence and communicates using an AAC device. Her two sons also experience autism along with co-occurring mental health diagnoses, informing Heather’s advocacy and insight into the full spectrum of family and system needs.

Originally pursuing a career in medicine, Heather studied molecular biology at Colgate University and began a PhD in biology at Johns Hopkins University. Following the birth of her daughter, she shifted into the field of developmental disabilities, serving as a direct support professional, residential manager, and Program Director.

In 2008, she co-founded the Upstate NY Autism Alliance (formerly Upstate NY Autism Awareness), a nonprofit providing parent training, inclusive family activities, sporting leagues, and authentic community inclusion. Heather also serves on her school district’s Committee on Special Education (CSE), sits on the board of the Under the Woods Foundation, and is a long-term trainee in the Stony Brook University Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program.

As an NYADD Lead, Heather brings strategic leadership, collaborative problem-solving, and deep understanding of the intersection between disability services, education, mental health, and family systems. She is a passionate advocate who believes that with the right supports, services, and accommodations, individuals of all abilities can thrive.

Dave Guerrera is one of the original Capital Region NYADD Leads, serving since 2020. He works closely with families and community partners to strengthen advocacy, improve services, and ensure the voices of individuals with developmental disabilities are heard across New York State.

Dave’s advocacy, along with his wife Mona, is deeply informed by his experience as the father of Joseph, his son with cerebral palsy and an intellectual disability. Joseph, now in his early 40s, has lived in a residential program in the Capital Region since the age of 17, while maintaining strong connections with his family, visiting home most weekends.

Through his role with NYADD, Dave draws on both personal and community experience to guide families, influence policy, and support systems improvements that enhance the quality of life, independence, and inclusion of individuals with developmental disabilities.

Sara Berg serves as a Regional Lead for NYADD and brings both personal and professional experience to her advocacy work. She has been navigating the disability services and educational systems since the birth of her son, Gabe, in 2008, and joined NYADD during the pandemic to highlight the needs of minor children living at home and attending school.

Sara has provided ongoing informal advisory guidance and has been actively involved in statewide initiatives supporting families. She previously served on the Capital Region FSS Council and was an initial member of LIFEPlan’s Member and Family Advocacy Council following the transition from MSCs to CCOs in 2018. She continues to share insights about self-direction as the parent of one of the first individuals in New York State to have a budget launched under SDS in 2015.

In her professional career, Sara holds a PhD from the University at Albany and has more than 15 years of New York State government experience, including two years as OPWDD’s lead researcher on the National Core Indicators In-Person Survey and the State of the Workforce projects. Her combined lived and professional experience informs her ongoing commitment to improving services, supports, and policies for individuals with developmental disabilities and their families.

Ellen Deutsch Alexander serves as a Regional Lead for NYADD on Long Island, bringing decades of experience advocating for individuals with developmental disabilities, particularly those who are non-speaking or have high support needs. She works with families to ensure appropriate services and supports are available throughout the lifespan and is especially focused on communication rights and enhanced use of video surveillance to improve safety and accountability.

Ellen’s journey as an advocate began in 1971, inspired by the publication of Bernard Rimland’s book on autism and her experience seeking a diagnosis and intervention plan for her oldest child, born in 1968. She emphasizes that no family can move forward alone, and her work centers on empowering families to navigate complex systems and advocate effectively.

Ellen was the first President of the Nassau/Suffolk Autism Society of America (NSASA), connecting families and meeting with legislators to advance supports and services. She has presented testimony on behalf of people with developmental disabilities at conferences nationwide and has brought her firsthand knowledge into policy and family advocacy work.

Through ongoing learning and engagement, Ellen discovered the Rapid Prompting Method, enabling her non-speaking son, now able to communicate via a letter board with a communication partner, to share his thoughts and experiences. This work underscores her belief that communication is a basic right for all individuals, and informs her legislative and advocacy priorities today. After all these years, her son is starting to use his voice to communicate thanks to Soma’s Method. Halo-Soma.org

When Barbara’s oldest child was in kindergarten, she saw a bus driver cover a child’s mouth with duct tape. Barbara called the school district who told her “no one else has complained.” Outraged, she contacted neighbors and showed up the next morning with 23 other parents. They got a new bus driver. That was Barbara’s first foray into advocacy.

Five years later, her son, Joe, was born. “We don’t know Down Syndrome,” the school district informed her. “You should move.”

As a single mom with five children, that wasn’t an option. Instead, Barbara did some research: The NYS Commissioner’s regulations on special education, part 200 the Wrights’ book From Emotions To Advocacy. She gathered documents, medical reports and requested appropriate services. Other parents asked, “How did you do that?”

Barbara began advocating for other families. For 20+ years, she’s worked as a Medicaid service coordinator, case manager, speaker and freelance writer.

She realized, once you have a child with disabilities, you’ve joined a club no one wants to join. But you also meet the most wonderful, amazing fellow advocates and their families.

Here’s what she’s learned in 28 years of advocacy: You really are the expert on your child; keep speaking out until someone hears
you’re not here to make friends (but friends will appear when you least expect it). You’re not alone.
Barbara shares those lessons on NYADD and enjoys asking other families

“Where are you from? What can we do to help?”

Doreen Jaggs is the Board Chairwoman for Autism Communities, Regional Lead for NYADD and is a member of the Executive Committee for C4SD. Formerly, Doreen worked in Human Resources and Employee Relations, specializing in resolving disciplinary and performance matters and conducting employee and management training.

Beyond these professional endeavors, Doreen has been deeply involved in the special needs community. Having a son who is on the autism spectrum, Doreen chose to homeschool her son for many years and founded a homeschool group for special needs families in Pennsylvania where her family was residing at the time. This initiative underscores her commitment to advocacy and support.

Doreen earned her Bachelor’s degree in Psychology and holds a Master’s degree in Counseling, which equip her with a strong foundation in understanding human behavior and addressing individual needs.

Join NYADD as a Regional Lead

Are you passionate about helping people with developmental disabilities live full, inclusive lives? Join NYADD as a Regional Lead and be a voice for advocacy, connection, and change in your community. Together, we can strengthen supports and create meaningful impact across New York.

Our Team

Katy Foxen-Faivre

Steve Gonyea

Peter Zummo

Simcha Weinstein

Obaida Omar

Rita Jones-Saffian

Renee DeFilippis

Shannon LaVigne

Jillian Eisloeffel

Linda Molina

Susan Havko

Heather Walters

David Guerrera

Sara berg

Ellen Deutsch Alexander

Barbara Carson-Todd

Doreen Jaggs

Join NYADD as a Regional Lead