Skirboll 2024: Inclusive Care, Inclusive Living: Support Across the Life Course

Session 1: Identity and Relationships: Creating and Maintaining Safe Spaces

Presenters: Leona Oakes, Ph.D., Lilah Sperandio-Arsenault
An overview of sexual and gender identity in people with disabilities as well as consideration to sexual health and safe practices.

Leona Oakes, Ph.D. is a licensed psychologist that specializes in working with neurodiverse individuals of all ages and their supporters. Through her private practice, Oakes Psychological Services, she provides individual therapy, psychodiagnostic assessment, consultation services and skill building classes. Her work focuses on addressing mental health concerns, helping adolescents and young adults successfully transition into adulthood, and supporting individuals of all ages and abilities with a strength-based, person-centered approach. In addition to providing assessment and therapy services, Dr. Oakes also offers supported decision making consultation. During these consultation sessions, Dr. Oakes facilitates the process for young adults to identify their supporters and their roles, and establish how they and their team will make and document decisions.

Session 2: Ensuring Access to Health care for Patients with Disabilities: Strategies for Caregivers

Presenter: Amanda P. Laprime, Ph.D., BCBA-D, LBA
A discussion of key considerations for youth with disabilities who are transitioning into the adult health care system and the community resources available to them.

Dr. Amanda Laprime is an Assistant Professor of Pediatrics at the University Of Rochester Medical Center. Since coming to URMC 2 years ago, Dr. Laprime developed the first, intensive behavioral team (IBT) that provides outpatient behavior support, and inpatient consultation to individuals with autism spectrum disorders across the medical center. This team specializes in interdisciplinary approaches to trauma informed models of behavior analytic intervention for those patients who struggle to access their medical care, or experience challenges with behavioral stability in their homes and communities. She serves as a committee member for the OPWDD DDAC, and as a member of the public policy committee for the National Council of Severe Autism. 

Session 3: Systems Navigation Across the Lifespan Panel

Presenters: Lisa Luxemberg, LCSW, Matt Fico, Laura Hurwitz, M.S., Jennifer Cardinale, and Brittany Jencik
This panel aims to discuss chal lenges navigating important systems of care for individuals with disabilities and strategies to navigate barriers.

Lisa Luxemberg is an experienced Licensed Clinical Social Worker who has worked at the University of Rochester Medical Center for over thirty years. She initially worked in the field of Obstetrics & Gynecology, specifically focusing on teen pregnancy, before transitioning to Developmental and Behavioral Pediatrics (DBP) in 2014. Lisa has been an integral part of an interdisciplinary team and has actively participated in various programs such as Autism ECHO, Webinar presentations on ASD during COVID-19, the DBP Feeding Clinic, the Behavioral Health program, and the FASD clinic at our East River Road Clinical Offices.

Matt Fico joined The Arc of Monroe as the Community Outreach Coordinator in 2019. While in his previous role at the Regional Center for Independent Living, he served as a Peer IL Counselor with the ACCES-VR/RCIL Peer Pilot Program and Supervisor of Employment, Benefits Advisement, and No Wrong Door/NY Connects Services. He aims to create a better bridge and knowledge base for transition-age students, community members with IDD, their families, and all support staff. This ensures that they are educated and aware of the programs, resources, and services available as they transition from school and plan for their adult lives. As a person with a disability, Matt takes great pride in working with disabled individuals and those who support them.

Laura Hurwitz serves as a Resource and Referral Specialist for the Mid-West Family and Community Engagement Center (FACE Center). The center is part of the New York State Education Department and focuses on Special Education. In her role, Laura is a crucial support for families, helping them understand the special education process for students aged 5-22. Her expertise spans across various settings, including early intervention, preschool special education, general education, pre-kindergarten, and elementary special education. Her educational background includes a B.A. in Child Study and Human Development from Tufts University, and a M.S. in Special Education from St. John Fisher University.

Jennifer Cardinale is a highly experienced professional in special education with over twenty years of expertise. In her role as the Coordinator of Special Education for the Rush-Henrietta Central School District. She is a passionate advocate for disability awareness and inclusivity, leading initiatives that promote these values. Currently pursuing her Ed.D. in Human Development and Behavior Analysis at the University of Rochester’s Warner School of Education, Jennifer's research delves into how knowledge and perspectives on disability influence decision-making, particularly regarding challenging behavior and school discipline.

Brittany Jencik is the president of the Parents Helping Parents Coalition of Monroe County, which is an advocacy organization dedicated to supporting families through the challenges of suspecting developmental delays, seeking evaluations, receiving diagnoses, and finding crucial supports. Passionate about family, adoption, and child advocacy, Brittany is committed to empowering families by connecting them with the resources available in the community. In 2022, Brittany was honored with the Woman of Distinction award by the New York State Assembly. For Brittany, supporting and uplifting families is not just a responsibility—it's a privilege and one of her greatest joys.

The 2024 Skirboll Family Autism Conference is pleased to offer continuing education credits for CME, CNE, NYS Social Work, NYS Psychology, NYS Marriage and Family Therapy, and NYS Mental Health Counselors. To provide flexibility to attendees, each day of the conference has been certified as a separate activity. You can attend as many days as you like. If you want to receive credit for a day of the conference, you must attend all the program sessions for that day.

Session 1: Employment and You! Key strategies and resources to consider to get real jobs for real pay

Presenters: Marilee Boylan, M.S., OTR, Bin Feng, Brendan Klein
An overview of employment systems, opportunities, and supports for disabled adults in New York State.

Marilee Boylan is an experienced professional who has dedicated 23 years to supporting individuals with intellectual and developmental disabilities. Her extensive background includes 14 years as a Transition Specialist for The Poudre School District in Fort Collins, Colorado, where she helped students with significant disabilities develop employment skills and secure competitive integrated employment. In 2013, she led the implementation of the first Project SEARCH program in Colorado, utilizing a customized employment approach to maximize her students' employment outcomes. Marilee also played a crucial role in establishing The Arc of Larimer County, a non-profit organization providing advocacy for people with intellectual and/or developmental disabilities. Her efforts led to the creation and implementation of significant Employment First Legislation in Colorado, promoting the inclusion of individuals with disabilities in the workforce. Additionally, Marilee serves as the NY Statewide Coordinator of Project SEARCH and remains committed to educating and advocating for individuals with IDD in New York State.

Bin Feng is a software engineer living in Queens, NY. He is the father of a young adult son with Autism and has been actively assisting other Chinese families with developmental disabilities for over 20 years, both in China and the US. He is a dedicated leader in the Chinese special needs community in NYC and the US, serving as a parent member for the NYS Council on Developmental Disabilities, Autism Speaks Ambassador, and Co-founder of Project Ready Inc. Bin holds a M.S. in computer science from SUNY Stony Brook and a M.S. in Physics from Indiana State University. With over thirty years of experience, he has been working as a software engineer and has been making significant contributions to the special needs community.

Brendan Klein serves as the Coordinator of Self Advocacy & Community Engagement at the Westchester Institute for Human Development. He is actively engaged in self-advocacy at both the local and state levels, holding positions as a WIHD UCEDD CAC board member and as the President of the Hear Our Voices statewide group. He is currently involved in the Westchester County IDD Advisory Committee and serves as a self-advocate on the DDAC Self Direction Committee and DDPC NYS Developmental Disabilities Planning Council.

Session 2: Transition to Adulthood: Mechanisms for Decision Making

Moderator: Kim Berg
Presenter: Kim Weisbeck, Carrie Baker, Lisa Latten, M. Ed., Naomi Brickel, Christina Mulé, Ph.D.
This panel aims to describe options for future planning and decision making (e.g., supported decision making, guardianship, conservatorship, health proxy, etc.) that are available to individuals with disabilities (I/DD) and their strength and weaknesses.

Kimberly Berg serves as a Program Planner for the Individuals and Families Committee at the NYS Council on Developmental Disabilities (CDD). She has been contributing to the CDD in various roles since 2014, embracing the collaborative environment for creating impactful projects and advocacy efforts that benefit individuals with IDD and their families in New York. With a Ph.D. in Cultural Anthropology, Kimberly integrates the principles of her academic background into her work at the CDD.

Kim Weisbeck, J.D. became a part of Disability Rights New York (DRNY) in April 2017. Prior to joining DRNY, Kim spent over 10 years in private practice, advocating for children and adults in Family and Supreme Courts. During this period, she was honored with two awards for her exceptional representation of children. Since her transition to DRNY, Kim has effectively supported clients in cases involving guardianship, including defending them against guardianship and assisting in the removal of guardians in Surrogates Court. In addition, Kim manages DRNY's guardianship rights restoration practice and delivers presentations throughout the state on guardianship issues, the civil rights of individuals with disabilities, and alternatives to guardianship. Kim is an alumna of St. Lawrence University and Albany Law School.

Christina Mulé Ph.D. specializes in neurodevelopmental disorders, with a primary focus on autism spectrum disorder. She is skilled in assessing and treating neurodevelopmental challenges using a multi-systemic approach that considers the complex network of systems affecting children. Her main research interests include health disparities in autism care and the development of innovative interventions to enhance the overall health and well-being of children with autism.

Naomi Brickel, MSEd, serves as the Project Director for Supported Decision-Making New York (SDMNY), where she leads the state’s efforts to promote supported decision-making (SDM) as a legally recognized alternative to guardianship for individuals with intellectual and developmental disabilities and autism. Passionate about disability social justice, Naomi is an accomplished author, advocate, and motivational speaker, recognized nationally for her expertise in youth and family engagement. Drawing from her personal and professional experiences, she is dedicated to promoting self-determination and empowerment among young adults, supporting families in navigating disability service systems, and fostering more inclusive communities through professional capacity building. Residing in New Rochelle, NY, Naomi has devoted her adult life to raising her family, contributing to the community through volunteer work, and pursuing a career in non-profit service.

Carrie Baker has a strong background in advocacy in the Rochester area. She began her career as a health educator, focusing on women's health in the mid-90s. Later, she transitioned into HIV/AIDS prevention education, working to educate the community on how to reduce their risk of HIV and supporting those living with the disease. In 2003, Carrie became involved in Disability Advocacy when her oldest daughter was born with Down syndrome. She worked as an educational advocate through The Advocacy Center, which is now known as Starbridge due to a merger. In her current role, Carrie is involved in shaping the education of medical students, residents, and clinicians at the University of Rochester’s Strong Center for Developmental Disabilities (SCDD). She serves as the Advocacy Discipline Co-Coordinator for the Leadership Education in Neurodevelopmental Disabilities (LEND) program and as the Director for the Family Experience program.

Lisa Latten works as a Clinic Administrator in the Division of Developmental and Behavioral Pediatrics. Her background includes volunteering with Autism Up, where she assisted families in accessing resources and navigating the intricacies of the disability world. With experience as an educator and a parent of a young adult with autism, Lisa specializes in bridging the gap between medical and school systems, recognizing the importance of planning and advocacy in navigating these complex systems.

The 2024 Skirboll Family Autism Conference is pleased to offer continuing education credits for CME, CNE, NYS Social Work, NYS Psychology, NYS Marriage and Family Therapy, and NYS Mental Health Counselors. To provide flexibility to attendees, each day of the conference has been certified as a separate activity. You can attend as many days as you like. If you want to receive credit for a day of the conference, you must attend all the program sessions for that day.

Session 1: Your Unlimited Supply for Setting Limits

Presenter: Sabrina Vogler, C.P.C., C.E.C., C.G.S.S.
This session is geared towards helping individuals with disabilities, caregivers, and providers engage in healthy communication and boundary setting.

Sabrina Vogler is a trailblazer in her field, being the first to integrate self-compassion into one-on-one coaching. She holds certifications as a Certified Professional Coach, Executive Coach, and Grief Specialist. Sabrina's approach is influenced by her experience working with the terminally ill as a licensed master social worker. Her clientele is diverse, ranging from C-Suite executives to mothers involved in soccer. Sabrina received training from industry pioneers and is also affiliated with Dr. Brené Brown’s leadership company, Brave Leaders Inc. In addition to her professional accomplishments, she is a mother to twin boys, an author, keynote speaker, thought leader, and a member of the Institute of Coaching at Harvard Medical School Affiliate McLean Hospital.

Session 2: Embracing Neurodiversity: Facilitating Autistic Individuals' Journeys in Higher Education and Transition to the Workforce

Endnote Speaker: Rachel VanDaalen, Ph.D.
This presentation will reflect the lived and professional experience of Dr. Rachel VanDaalen and her experience in higher education and employment settings.

Dr. Rachel VanDaalen, a postdoctoral scholar at the Stanford Neurodiversity Project. Her research focuses on understanding the responses of marginalized individuals, particularly neurodivergent and LGBTQ individuals, as well as multiply marginalized populations, to social and cultural stressors. She aims to explore how these responses are linked to one's sense of identity. Her current research primarily centers on enhancing employment outcomes for autistic adults and adults with intellectual and developmental disabilities (IDD), promoting disability access and equity in higher education, and addressing mental health challenges in marginalized communities. Dr. VanDaalen also investigates the application of the neurodiversity framework in various contexts and is passionate about teaching and providing therapy in university and community outpatient settings.

The 2024 Skirboll Family Autism Conference is pleased to offer continuing education credits for CME, CNE, NYS Social Work, NYS Psychology, NYS Marriage and Family Therapy, and NYS Mental Health Counselors. To provide flexibility to attendees, each day of the conference has been certified as a separate activity. You can attend as many days as you like. If you want to receive credit for a day of the conference, you must attend all the program sessions for that day.