Policy Impact Project

Policy Power Lunch, Rethinking Research: Autism in Indigenous Communities: Generating Community-Engaged Research and Policy
2024-12-04 13:00 - 14:00 (America/New_York)
Join the policy Impact Project for our Policy Power Lunch Series Rethinking Research: Autism in Indigenous Communities– Bridging Gaps in Autism Research and Policy.
We aim to spotlight unique issues affecting autistic people from Indigenous communities in the United States. We hope to empower researchers, stakeholders, policy experts, and advocates who actively engage with Indigenous and Actually Autistic communities. The focus will be on the needs of the communities the panelists serve or conduct research with, special considerations around the conduct of research and use of data that represents Indigenous people, and thoughts on how to support the needs of Indigenous people by better informing the policies that affect them.
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Joshua Drywater
Director of Native Initiatives
Virginia Commonwealth University’s Rehabilitation Research and Training Center
Joshua Drywater is a Training and Technical Assistance Associate at Virginia Commonwealth University’s Rehabilitation Research and Training Center, focusing on Indigenous inclusivity and Native Initiatives. Previously, he managed Native Initiatives at the University of Arizona’s Sonoran Center for Excellence in Disabilities, supporting individuals facing employment barriers. He holds an MBA in Native American Leadership from Southeastern Oklahoma State University and is a graduate of the University of Oklahoma Economic Development Institute. As a Cherokee Nation citizen and Army combat veteran, Joshua has extensive experience managing tribal economic and workforce development programs, including CAREER, ER, TET, and DEI grants, and overseeing ARPA and Public Law 102-477 funds.

Olivia Lindly, PhD, MPH (She/Her/Hers)
Assistant Professor
Department of Health Sciences, Northern Arizona University

Dr. Olivia Lindly is an assistant professor in the Department of Health Sciences at Northern Arizona University. Dr. Lindly’s academic background is oriented in psychology and public health. She completed the predoctoral junior fellowship program at the Agency for Healthcare Research and Quality and the postdoctoral Harvard-wide Pediatric Health Services Research Fellowship program at Massachusetts General Hospital. Some of Dr. Lindly’s current research studies include NIMH R01 Addressing Structural Disparities in Autism Spectrum Disorder through the Analysis of Secondary Data (ASD3) and NIMH R01 Validating Measures and Unpacking Differences in Service Use for Diverse Children with Autism. These projects both involve mentorship and training components for diverse students, fellows, and/or staff, many of whom are from underrepresented backgrounds in the biomedical and behavioral health sciences. Dr. Lindly recently led and completed grants to adapt and pilot the Parents Taking Action program (an evidence-based parent education and training intervention) for Diné (Navajo) parents/guardians of children with autism. She and Dr. Running Bear recently received a grant from Mercy C.A.R.E.S. to sustain and spread this work in partnership with a 638 autism diagnostic clinic in the Navajo Nation along with an NIMH R21 on culturally responsive autism assessment for Diné families. Dr. Lindly has extensive training, expertise, and a well-established track record of successful collaboration with families of children with autism and community-based organizations.

Candi Running Bear, PhD (She/Her/Hers)
Assistant Professor
Early Childhood Department, Western New Mexico University
Dr. Candi Running Bear is a citizen of the Navajo Nation from St. Michaels, AZ. She is of the
Hashk’ąąn Hadzohí (Yucca fruit hung on a string) clan and born for the Ma’ii Deeshgiizhinii
(Coyote pass/Jemez) clan. She was a special education early childhood classroom teacher for more than a decade. Her academic degrees include a BS in psychology, an MA in special education, and a PhD in curriculum and instruction with a focus on culturally and linguistically diverse exceptional children. Dr. Running Bear is an assistant professor at Western New Mexico University in the Early Childhood Department. She has conducted research regarding literacy for Diné preschoolers and parent training for Diné families of a child/children with autism. Presently, she is working with a team to sustain and spread the use of the adapted parents training program, Parents Taking Action, for Diné families of children with autism. With another team she is working on a project that aims to develop recommendations to ensure that autism assessment practices and the context in which assessments occur are culturally responsive for Diné families who have a child with autism. Her future research interests are to use a community engaged approach to analyze existing large data sets that include information about young American Indian/Alaska Native children with disabilities which can benefit indigenous children, families, and their communities.

Policy Power Lunch: What’s in Your Advocacy Toolbox? Building the Skills to Connect with Policymakers
2024-09-11 12:00 - 13:00
Join us for a community conversation focused on empowering disability self-advocates, researchers, professionals and community-based organizations, and others who want to learn the skills needed to effectively connect with policymakers. This webinar aims to equip participants with practical tools and strategies to enhance their advocacy efforts and make real policy impact.
During this conversation, we will discuss:

Redefining what and who can impact policy

Key techniques for effectively communicating with policymakers

Strategies for building and maintaining relationships with decision-makers

Ways to use research to articulate your message and advocate for your community’s needs

Practical tips for engaging in policy advocacy, both in person and virtually

How to communicate issues without lobbying as a non-profit

Register Here

Nicole Jorwic
Chief of Advocacy and Campaigns
Caring Across Generations
Nicole is an experienced executive, policy expert, and advocate with over 15 years of expertise in team building, strategic planning, program management, and organizational development. She has a strong track record of helping non-profit and mission-driven organizations build diverse teams, form coalitions, and secure support for people with disabilities and family caregivers.
Nicole’s leadership is marked by her commitment to diversity, equity, inclusion, and accessibility (DEIA), as well as her ability to drive positive change. She excels in ensuring the financial and programmatic health of organizations while advocating for policy advancements. Her skills as a compelling spokesperson for non-profits make her effective in engaging with high-profile audiences, including funders.
Nicole is adept at building relationships with cross-functional teams and stakeholders, ensuring the successful execution of strategic plans. Her areas of expertise include board governance, resource allocation, fundraising, people management, and consensus building.
Passionate about advocating for people with intellectual and developmental disabilities, Nicole is actively involved in various coalitions and serves as a board member of the National Association of Direct Support Professionals (NADSP). She is also a member of The President’s Committee on People with Intellectual and Developmental Disabilities, recognized for her innovative solutions and bipartisan approach to policy challenges.

Kim Musheno
Executive Vice President of Public Policy
Autism Society

Kim Musheno is a passionate advocate for the rights and well-being of autistic people, currently serving as the Executive Vice President of Public Policy at the Autism Society of America, the nation’s oldest and largest grassroots organization. In her role, Kim focuses on developing and implementing strategies to connect autistic people and their families to essential support and services. With a career spanning over 30 years, her extensive experience in federal disability policy has had a profound impact on disability rights in Washington.
Recognized as a leader in the field, Kim has held key positions, including serving as chair of the Consortium for Citizens with Disabilities (CCD), a prominent coalition of over 100 national disability organizations. She continues to contribute as co-chair of the CCD’s Autism and Education Task Forces and as a member of the Employment, Health, and Long-Term Services Task Forces.
Before joining the Autism Society of America, Kim spent 16 years as the Director of Public Policy for the Association of University Centers on Disabilities, where she represented a network of university-affiliated researchers and programs. Earlier in her career, she worked as a communications specialist at The Arc of the United States and as a research assistant at the National Association of Councils on Developmental Disabilities (NACDD).

Denise Rozell, JD
Director of Policy Innovation
Policy, Innovation, and Education (AUCD)
Denise Rozell, JD, is the Director of Policy Innovation at the Association of University Centers on Disabilities (AUCD), where she focuses on issues impacting transition-age youth, post-secondary education, and employment. Her work includes advocating for inclusive post-secondary education for students with intellectual disabilities in partnership with Think College and supporting employment initiatives with the University of New Hampshire.
With 35 years of experience in disability policy at both federal and state levels, Denise has been involved in shaping key legislation, starting with the Americans with Disabilities Act. Before joining AUCD, she spent 15 years as Assistant Vice President for State Government Relations at Easter Seals, where she increased awareness and support for disability issues in state government, addressing areas such as autism, Medicaid managed care, vocational rehabilitation, and health delivery system reform.
Prior to Easter Seals, Denise served as Executive Director of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER), overseeing member services for 4,700 members across 44 chapters. She also held positions as Governmental Relations Representative for the American Foundation for the Blind and Director of Public Policy for the National Association of Developmental Disabilities Councils.
Denise earned her bachelor’s degree in political science from Occidental College and a juris doctorate from UC Berkeley School of Law.

Policy Power Lunch Rethinking Research Series: Autism in Immigrant Communities – Bridging Gaps in Research and Policy.
2024-07-17 12:00 - 13:00
We aim to spotlight the unique needs and life experiences of autistic people from immigrant families in the United States. We hope to empower researchers, stakeholders, policy experts, and advocates to work towards real-world policy and research changes.
In several countries, autistic people face immigration bans due to potentially high support costs. For those who immigrate, accessing care for autism diagnosis is often delayed, despite studies indicating a higher likelihood of autism in children of immigrants. In particular, children of Black immigrants, Central or South American immigrants, Filipino immigrants, and Vietnamese immigrants are more likely to be diagnosed with autism and co-occurring intellectual disabilities. Even less is known about the identification of autistic immigrants with lower support needs.
As these children transition into adulthood, immigrant families report a lack of information and support. Few U.S. studies have examined the transition experiences of non-native autistic youth and their families. Given that one in four children in the U.S. has immigrant parents, this is a critical population for services and policy focus. Join us for an insightful session and proactive dialogue addressing these pressing issues.
In this webinar we will:

Discuss the unique needs and experiences of immigrant autistic people and their families.
Discuss what policymakers and people who are making decisions about services should know about this community.
Learn what culturally responsive polices and research can look like to support immigrant communities.
Learn how current politics, policy, and current events impact immigrant autistic people and their families.
Learn what resources are currently available to meet families’ needs
Discuss what services and supports should be available to meet the needs of immigrant communities.

Register here
Featured Panelists:

Sarorng Sorn
Department of Behavioral Health and Intellectual disAbility Services
Sarorng (Rorng) Sorn is the Director of Immigrant/Refugee Affairs and Language Access Services for the City of Philadelphia Department of Behavioral Health and Intellectual disAbility Services (DBHIDS). Her pronouns are she/her/hers. In her role, Rorng works to develop strategies and policies to increase access to behavioral health and intellectual disability services for immigrant/refugee and special population communities. Rorng settled in Philadelphia as a refugee from Cambodia in 1987. She has over 30 years of combined experience in public, private, and nonprofit sectors working to address the challenges of refugee and immigrant communities in Philadelphia and the U.S. Through her dedication to serving marginalized communities, she has received multiple awards, including the Special Achievement Award for Dedicated Service in Support of Human Rights of the U.S. Department of Justice Community Relations Service, 6ABC’s Outstanding Community Service Award, an honorary degree, Doctor of Humane Letters, from Gwynedd Mercy University in 2019, and the Government winner of the Health and Wellness Achievement Award for the 2023 Philadelphia Welcoming Awards. Sarorng received a master’s degree in Nonprofit/NGO Leadership from the University of Pennsylvania in 2008. She loves traveling, kayaking, hiking, ziplining, camping, and spending quality time with family and friends in her spare time.

Khylil Robinson
Department of Behavioral Health and Intellectual disAbility Services
Khylil Robinson has been involved in autism advocacy since 2014, starting with a presentation at the Community College of Philadelphia. He contributed to the early development of the Philadelphia Autism Project and has held roles such as #ASDNext Blogger, Family Motivator/Self Advocate at SpectrumSuccess911, and Youth MOVE Youth Advocate. Khylil is a regular panelist for the Annual Autism Project and has conducted over 60 educational Zoom meetings. He received the Grapevine Award in January 2022 and the Jordan A. Smith award in December 2022. As a Community Autism Peer Specialist, he continues to advocate for the autism community.

Karina Castillo
Corazones Unidos para el Autismo
Karina Castillo is the executive director for Corazones Unidos Para El Autismo, a nonprofit focused on bridging the gap between several communities including Latinos, autism, LGBTQ+ and more. She has been committed to growing her nonprofit for more than 10 years and has helped countless families and caregivers in the community. She worked aside her husband helping families via small support groups understand the challenges of raising children in the spectrum while also celebrating the small milestones that are accomplished every day. She has walked along side parents and caregivers by making sure they can get access to care and also helping them understand their rights. Because of her experience with her own family, she has been able to successfully publish 2 books on stories from caregivers and advocates. As a parent who migrated from Ecuador, she understands the challenges that most families face when transitioning to a new country.

Young Seh Bae
CIDA
Dr. Young Seh Bae is the visionary founder and Executive Director of the Community Inclusion & Development Alliance (CIDA), a grassroots organization committed to empowering individuals with disabilities through increased capacity and enhanced inclusion opportunities. Holding a doctorate in Special Education from Teachers College, Columbia University, and drawing from her experience as a special education teacher and a parent of a person with autism, Dr. Bae offers a unique perspective and profound understanding in her impactful work. Currently, she actively contributes as a committee member on the Advisory Council on Postsecondary Education for Students with Disabilities at the NY State Education Department and the Center for Appropriate Dispute Resolution in Special Education.

Veera Mookerjee
Resolveera
Veera Mookerjee, Ph.D., LMSW graduated from Yeshiva University, NYC. Her thesis title being “Transitioning Young Adults with Autism: Hopes and challenges for parents and care givers”. Post graduation she started her consultancy, Resolveera that focuses on serving the underserved, non-clinical transitional challenges faced by parents and caregivers of individuals with DD/ IDD and DE&I challenges. She founded and runs Resolveera along with a full time Training Specialist for Anthem BlueCross BlueSheild’s Education and Training department and also provides Mental Health therapy at the The Child Center of New York, a Mental Health clinic in NYC. Veera organizes parent workshops, training and provides consultancy services to Early Intervention centers. Veera is on the board of New York Zero To Three (NYZTT), and Co-Chairs the organization’s DE&I Committee. She is the Vice President of the Board of a new South Asian Mental Health focused CBO in NYC and collaborates with agencies focusing on community health. She is a long-standing member of National Association for Social Workers (NASW) NY State Chapter and is on their Diversity Committee. She has been recently re-elected as the Westchester County, NY State Division Director and represented the County at the State’s NASW Board. Veera conducts CEU workshops for Social Workers in NYS, as she is one of the facilitators for the “Unapologetically South Asian” a Special Interest Group run by NASW-NYS chapter to promote best practice in clinical and non-clinical setup while working with the community. Veera’s book titled “Transitioning Young Adults with Autism”, summarizes her doctoral study and is available in Amazon for interested readers. Dr. Mookerjee works with diverse communities, excels in public relations and networking strategies.

Policy Power Lunch, Rethinking Research: Addressing the Importance of LGBTQ + Autism Research and Policy.
2024-04-03 12:00 - 13:00
Join the policy Impact Project for our Policy Power Lunch Series Rethinking Research: Addressing the Importance of LGBTQ + Autism Research and Policy.
We aim to spotlight critical issues affecting LGBTQ people within the Actually Autistic community. We hope to empower researchers, stakeholders, policy experts, and advocates who actively engage with the LGBTQ+ and Actually Autistic communities. We seek to catalyze a proactive and inclusive dialogue that drives real world policy and research changes.

Identifying needs/issues for LGBTQIA+ autistic individuals and their families.
Addressing unique challenges for LGBTQIA+ autistic people.
Analyzing how politics, policies, and current events impact LGBTQIA+ autistic people.
Assessing available resources for LGBTQIA+ autistic people and their families.
Discussing necessary services and support for the LGBTQIA+ autistic community.

Register here

Speakers
Lydia X. Z. Brown (They/Them)

Lydia X. Z. Brown is a disability justice advocate, organizer, and attorney, focusing on issues such as violence against marginalized disabled individuals. Currently, they are co-leading a project on disability rights and algorithmic fairness at Georgetown University Law Center. Lydia has been honored by various organizations and has contributed significantly to community and scholarly publications, as well as news outlets.
Laura Graham Holmes, Ph.D (She/Her)

Laura Graham Holmes is assistant professor of social work at Hunter College in New York City. She has led community-engaged research on sexual and reproductive health services among autistic youth and adults. Her work has centered autistic youth with an emphasis on addressing intersections of autism with injustices and inequities rooted in racism, class-based oppression, misogyny, and homophobia.
Oluwatobi Odugunwa (They/Them)

Oluwatobi (they/them) is an autistic and chronically ill advocate for disability and racial justice and LGBTQ rights. Their academic expertise is in intersectionality and health justice as well as gender and sexuality. Oluwatobi is the Program Coordinator at the Autistic People of Color Fund and is involved with local social justice organizations. They currently work as DEI consultant at a publishing company.

Assessing the Impact of the Medicaid Unwinding
2023-10-18 12:00 - 13:00
Join the Policy Impact Project and Joan Alker for a talk about the state by state Medicaid landscape and what it looks like as we move from the Medicaid Continuous Coverage Requirements and transition back to regular operations after the Public Health Emergency (PHE). We will look at the available data and discuss what impact the Medicaid Unwinding will have on people across the country.
Goals

Examine Medicaid’s role during the pandemic’s early days and the Public Health Emergency.
Identify the implications of administrative disenrollment and its prevention.
Understand the impact of the Consolidated Appropriations Act on Medicaid.
Understand how “unwinding” affects healthcare access.

Register Here
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Speaker

Joan Alker
Executive Director of the Center for Children and Families and a Research Professor at the Georgetown McCourt School of Public Policy.

Beyond Autism Awarness
2023-04-19 12:00 - 13:00
This free webinar will delve into the challenges and opportunities that exist beyond mere awareness of autism. As our understanding of autism evolves, it is crucial to explore how we can move beyond awareness toward greater acceptance, inclusion, and support for individuals on the spectrum.
This webinar will provide a platform for autistic self-advocates, family members, and others in the autism community to discuss what comes next after autism awareness.
Topics Include:

What does autism awareness month actually bring awareness to?
How can we better honor and celebrate autistic voices year-round?
What do autistic people want non-autistic individuals to know?
How can we better support autistic individuals in our community?

Hosted by: ASERT (Autism Services, Education, Resources and Training), The Philadelphia Autism Project, and The Policy Impact Project.
Click Here To Register

Questions? Email info@paautism.org.

Understanding the Intersection of Reproductive Rights and Disability Rights: Unpacking the Topics
2022-11-02 12:00 - 13:00
Changes in how laws and governments have authority and power over bodily autonomy were brought to the forefront with the Supreme Court’s decision to strike down Roe v. Wade. The ripples of this decision will continue to be felt far and wide. What will the impact be on disabled people, whose bodies, privacy, and autonomy have been subject to scrutiny for generations?
Following the United States Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization which overturned Roe v. Wade, discussions about government control of healthcare access and the rights of disabled people should be front and center.
Webinar Objectives

Understanding of this issue and how it connects to disability rights.
Discuss what is next and what are the wide-ranging implications of this decision.
Discuss on the ground advocacy.
Discuss the future of reproductive rights and disability rights.

Register here
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Webinar Speakers

Dena L. Gassner, LMSW
Dena is an appointed member to the Interagency Autism Coordinating Committee (IACC) providing recommendations to the office of the White House regarding autism research funding. She is the co-chair of the Autistic Researcher Committee (ARC) for the International Society for Autism Research (INSAR). She is also a member of the Autism Intervention Research Network in Physical Health (AIR-P) and is a member of the AIR-P Gender, Sexuality and Healthcare Node. As an autistic woman, she seeks to live a life of authenticity.

Morrigan Hunter, MA, MSW
Morrigan (they/them) is an Autistic social worker whose focus is on making systems changes to address violence against the disability community. Much of their work centers on raising awareness of the ways in which systemic oppression contributes to the loss of autonomy of disabled people and people with disabilities, particularly individuals who experience multiple forms of oppression.

Oluwatobi Odugunwa
Oluwatobi (they/them) is an autistic and chronically ill advocate for disability and racial justice and LGBTQ rights. Their academic expertise is in intersectionality and health justice as well as gender and sexuality. Oluwatobi is the Program Coordinator at the Autistic People of Color Fund and is involved with local social justice organizations. They currently work as DEI consultant at a publishing company.
