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Georgetown University Center of Excellence in Developmental Disabilities Quarterly Newsletter. Quarter 1 vol.6 October 17th 2022. An image of a young African American man. Smiling and wearing a red shirt. He is teaching a sign language class to a group.

Meet our new Associate Director!
The GUCEDD hired Pamala Trivedi, PhD, NCSP, to be the new Associate Director. Pamala is a licensed psychologist, nationally certified school psychologist, policy expert, and applied behavioral health researcher with more than two decades of experience supporting children, youth and adults across a range of developmental levels, as well as the providers and families who care for them. She is committed to strengths-based, resilience-focused approaches, and brings a national policy lens to her work in building and sustaining systems that are responsive to the behavioral health and learning needs of children, families, and providers. Pamala’s interest in embedding healing-centered, resilience-focused approaches into systems-building springs from her work in examining natural family and community strengths that can buffer the effects of early adversity.
Pamala has served in many roles across early care and education, public schools, and medical and in health care institutions. She has provided training and technical assistance and conducted applied research in university settings and the federal government. Her research and policy portfolio has included a strong emphasis on early childhood special education, infant and early childhood mental health, school-based behavioral health, and work at the intersection of behavioral health and disabilities. During her time in the federal government, Pamala worked on policy providing alternatives to exclusionary discipline that addressed disparities for young children of color. As the parent of a child with behavioral health needs, she has also been a tireless advocate for embedding social-emotional supports and services in inclusive educational settings. Pamala currently supports educator and staff wellness as a school-based behavioral health clinician in a DC charter school. She has recently conducted research on how States are building and sustaining a continuum of promotion, prevention, and treatment that constitute early childhood systems of care. She has also worked extensively on parenting supports that build adult capacities to handle challenging behavior, particularly in children who are neurodiverse. Pamala continues to learn and be humbled by parenting her seven- and nine-year-old children, and lives with her family in Washington, DC.

Pamala is very excited to help lead implementation efforts at the GUCEDD and direct the GULEND program. Her experience as a LEND trainee at Georgetown early in her career deeply impacted her preparedness to engage in national policy and research that centers the experiences of individuals with special healthcare needs and their families and caregivers.
New Projects at GUCEDD

The Georgetown University National Center for Cultural Competence (NCCC) and GUCEDD are pleased to announce the following newly funded projects. Please check out our website! There is more to come on these exciting new initiatives.
A three-year contract designed to advance policies and practices of diversity, equity, and inclusion (DEI) and cultural and linguistic competence in all components of the intellectual and developmental disability system of New York.
The Arc of New York Diversity 
An 18-month professional development and technical assistance project to assist The Arc New York in examining and developing strategies to enhance its capacity for diversity, equity and inclusion (DEI). 
National Center for Disability, Equity, and Intersectionality
A five-year grant with the University of Cincinnati Center for Excellence in Developmental Disabilities (principal) to create and maintain a national resource center on disability, equity, and intersectionality to build the capacity of the communities across the nation to be more inclusive and culturally competent towards individuals with disabilities, including those with marginalized identities. The GUCEDD will conduct an array of activities to advance equity in healthcare and community settings for persons with intellectual and developmental disabilities. Activities include but are not limited to a Community of Practice, knowledge development, technical assistance, training, consultation, resource development, and dissemination. Funded by the Administration for Community Living, Administration on Disabilities. 
Including Adults with Intellectual Disability in Precision Medicine Research – Project ENGAGE 
A five-year research grant with Syracuse University and Columbia University (principals) that will: (1) Identify preferred decision-making role and needs for engagement in Precision Medicine Research (PMR) decisions among adults with intellectual disability (ID); (2) Create an empirically-based, intellectual disability-tailored, Precision Medicine Research study-adaptable consent toolkit to support PM researchers in including adults with ID in PMR; and (3) Conduct a social validity study with Precision Medicine researchers to assess the Toolkit’s usability, relevance, acceptability, and comprehensiveness. Funded by the National Institute of Health. 
GUCEDD Advisory Council
GAC Recruiting New Members
The Georgetown Advisory Council (GAC) is welcoming new members! We are looking for persons with developmental and other disabilities and their families who live in DC. GAC members provide valuable input and partner with the GUCEDD to meet its mission and the goals and objectives of its five-year plan focused on improving the quality of life for persons with developmental and other disabilities, their families, the communities in which they live, as well as enhancing the system of supports and services in DC. 

The GAC meets 3 times a year. Our next meeting will be held on November 30th from 1:30-3:30 PM. If you or someone you know is interested in joining the GAC or learning more, please contact Jalyn Marks at
Interdisciplinary Training
LEND and GUCEI Training Update
Professors Rachel Brady Pamala Trivedi and Tawara Goode are standing with the new GULEND and GUCEI cohort. Everyone is smiling and wearing formal clothing. They are standing outside of a conference room.
We are pleased to welcome our new cohort of trainees for our Leadership Education in Neurodevelopmental & Related Disabilities (GULEND) and Certificate Program in Early Intervention (GUCEI). The GULEND program is supported by a grant from the US Department of Health and Human Services, Health Resources Services Administration, Maternal and Child Health Bureau and trains providers of children, youth, and young adults with autism and other developmental disabilities, as well as advocates and family members. The focus of the GULEND program is strengthening services and supports throughout the lifespan for people with disabilities and their families in the DMV.

The GUCEI program prepares trainees to develop a system of services and support for infants, toddlers, and young children with disabilities and delays in development. GUCEI provides advanced training in comprehensive, evidence based early intervention practices, including a systems of care approach to services and supports. The GUCEI program’s deep focus on early childhood nicely complements the LEND training that considers the lifespan of people with disabilities and the families and caregivers who support them.

Our new trainees span diverse fields of practice, including speech and language pathology, special education, psychology, law, policy and advocacy, and family medicine. Our trainees are coming to us at various points in their careers. Some of our trainees are pre-service and are still preparing to serve people with disabilities. We also have several trainees that are in multiple roles of having lived experience in disabilities and providing services and supports to people with disabilities and their families. We are excited to kick off our new program year!
A headshot of Marisa Brown. Marisa is a middle aged white woman with short gray hair and glasses. She is slightly smiling and is looking up at the camera.
GUCEDD Adjunct Faculty Member Visits Ukraine
Content Warning: Details of institutionalization

Inherited from when Ukraine was a part of the Soviet Union, its institutions look very much like the US system in the 1950s: overcrowded, understaffed, and underfunded. GUCEDD assistant professor Marisa Brown joined a team of experts–lawyers, psychologists, disability systems management experts, and other volunteers from Disability Rights International (DRI) on a trip to visit institutions in the eastern part of Ukraine this past spring to investigate the conditions for children with disabilities.

Many families do not have the support they need to care for their child with a disability as they are evacuating their homes, so they leave their child behind in an institution. The institutions in the eastern part of the country are taking people who need to be evacuated from the western part of the country, which is under attack. The institutions are overrepresented by children whose ancestry is Roma who might not necessarily have a disability. Once children enter the institutions, they live there for life. They are never discharged.

The children in the institution had no toys, no stimulation, and they heard something unique to a nursery and children’s home: very little noise. “I believe children do learn when there’s no use to cry,” said Professor Brown. The children were malnourished and lacked medical attention.

Professor Brown and her team from DRI put together a list of recommendations for the US government, including signing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and raising this issue as a matter of urgent priority and providing funding to address these conditions.

“I came away with the importance of the continued need for advocacy at all levels of
government, and the need to fuel optimism and hope in people with disabilities and their
family members that full community inclusion is possible,” said Professor Brown.

Professor Brown, a parent of a person who experiences a developmental disability, provided her reflections about her Ukraine trip to a group of medical students within the Department of Family Medicine’s Community Health Division (CHD) as part of the Master Speaker Series in June 2022. Her presentation exposed the trauma and tragedy of the current conflict has had on an already fragmented and under-resourced system.
Parenting Support Program (PSP) Participates in Photovoice

Five parents enrolled in the Parenting Support Program (PSP) participated in a pilot evaluation project called Photovoice. Photovoice is a visual research methodology that puts cameras into the hands of research participants so they can use their own lens to document their lived experience and point of view. Using their own cameras, parents enrolled in PSP reflect upon and communicate what is easy about parenting, what is challenging about parenting, and what they have learned from participating in the program. The Photovoice team included Deb Perry, Paula Cortés Campos, Clare Williamson, Beth Glicker, and an intern from Catholic University, Grace Polistina.
A headshot of Lisa Greenman a white woman with short wavy brown hair. She is wearing a collared shirt and is standing in front of the Georgetown University logo.
Interview with Waldorf Award Winner

This summer, the GUCEDD awarded disability rights lawyer Lisa Greenman with the 2022 Geraldine P. Waldorf, Making a Difference Award. The Waldorf Award recognizes outstanding and important contributions made to improve the lives of people with intellectual and developmental disabilities in the District of Columbia. Among other accomplishments, Greenman supported a young man with a disability who had been unjustly incarcerated and successfully fought for his release. GUCEDD interviewed Greenman about her experiences.
Expanded Eligibility for Adults with Developmental Disabilities

Adults with developmental disabilities are now eligible for services from the Developmental Disability Administration (DDA) of DC’s Department on Disability Services (DDS). In the past, only adults with intellectual disabilities were eligible for DDA services in DC. This change in eligibility is an important step towards equity for DC’s developmental disability community. The Georgetown UCEDD hosted a community forum to share information about this important change in DC law. For more information about who is now eligible for services and what services are available, you can view a recording of the forum. For information on how to apply for services, visit the DDS website.