CIDD Disability Advocate and podcaster, Kenneth Kelty, records an episode. (Spectrum News 1/Marshall Keely)

CIDD’s Kenneth Kelty is featured in .

‘We’re in a crisis’: North Carolina lawmaker, advocates call for disability support in budget.

The NC waitlist for Innovations Waivers has almost 19,000 people on it, and it’s growing. Governor Josh Stein is pushing for more funding for waiver spots in the budget, which pay for people to give direct support to people with intellectual and developmental disabilities. Even with waivers, many people living with intellectual or developmental disabilities can’t find direct support.

CIDD Disability Advocate and podcaster, Kenneth Kelty, waited on the Innovations Waivers list for 14 years before he got a slot in the program.

“I am a pretty independent person, but I still need help with being able to pay bills, and I still would like to be able to have someone take me out in the community,” he said.

Kelty’s waiver means he lives in a rent-controlled apartment and has help getting around, offering him freedoms he’d otherwise lose.

“If I did not have a DSP come or the waiver, I might unfortunately be stuck at home or a more segregated placement,” Kelty said.

But he’s still talking to many in his community who haven’t yet been afforded the same opportunities.

“They’re missing out on meaningful experiences,” he said.

His ask to lawmakers, for himself and for the people he’s meeting, is simple.

“I just want to be able to live my life and not have to worry about getting services or what could happen if I don’t,” Kelty said.

Read more in the .

Joe Piven, MD, giving his acceptance speech for the Lifetime Achievement Award at the International Society for Autism Research’s annual meeting.

On May 1, 2025, Joseph Piven, MD, the Thomas E. Castelloe Distinguished Professor of Psychiatry at the ����ý and director of the Carolina Institute for Developmental Disabilities (CIDD), was awarded the Lifetime Achievement Award by the International Society for Autism Research.

The award, the most prestigious honor in the field of autism research, recognizes the career of a researcher who has made significant advances to understanding autism that have made a lasting impact on the field. The  recipient is decided by the society’s board of directors, who are prominent international autism researchers themselves.

“This distinguished honor celebrates Dr. Piven’s visionary leadership and enduring contributions to autism research,” stated INSAR when presenting the award. “His work has shaped the field and inspired generations of scientists and clinicians.”

The International Society for Autism Research is the largest and most prominent autism research society in the world. Piven received the award at the society’s international meeting, held this year in Seattle, and he gave an acceptance speech overviewing his career’s work to an audience of over 2,400 international autism researchers.

Her presentation covers North Carolina’s new adult guardianship law (SL2023-124), which mandates considering less restrictive alternatives (LRAs) before seeking guardianship. It provides practical tools for self-advocates, families, and professionals to comply with the law. The Rethinking Guardianship website offers resources to identify LRAs in areas like health, hygiene, nutrition, community living, safety, and finances. Case examples demonstrate how LRAs can support greater choice and self-determination, avoiding unnecessary guardianship. This event will be live Spanish Interpreted.

View Spring 2025 CIDD Community Talk Webinar Series Flyer

El equipo de CIDD viajó al Centro de Desarrollo Murdoch a principios de este año. Fila trasera de izquierda a derecha: Eyram Bossiade (CIDD, aprendiz de MSW en LEND), Joy Solomon (Murdoch, Directora de Programas), Morgan Parlier (CIDD, Director de Servicios de Apoyo Familiar). Segunda fila de izquierda a derecha: Isabella Russo (CIDD, aprendiz de LEND MSW), Lauren Winfrey (CIDD, aprendiz de LEND MSW), Anna Ward (CIDD, Directora de Defensa e Inclusión), Annamae Giles (Gerente de Proyecto de ����ý Cares). Fila delantera de izquierda a derecha: Marcia Roth (Enlace de Sistemas con CIDD), Dava Hunt (Murdoch, Directora de Trabajo Social), Kim M (Murdoch).

El Instituto Carolina para las Discapacidades del Desarrollo (CIDD, por sus siglas en inglés), en colaboración con ����ý Cares, una iniciativa de impacto colectivo establecida por la Escuela de Trabajo Social de la Universidad de Carolina del Norte, están colaborando para explorar la comprensión, las necesidades y el interés en la vida comunitaria por parte de los residentes dentro de los Centros Estatales de Desarrollo (SDC, por sus siglas en inglés) y sus representantes y tutores legales. La población de enfoque para este proyecto son los residentes que llevan mucho tiempo en los centros (Centro Murdoch, Centro J. Iverson Riddle, Centro de Desarrollo Caswell), desde 2011 o antes.  A partir de 2012, cualquier persona que ingresara a un Centro Estatal de Desarrollo estaba obligada a tener un memorando de acuerdo (MOA, por sus siglas en inglés), que incluía una transición a un plan comunitario desarrollado en conjunto con su Entidad de Gestión Local/Organización de Atención Administrada (LME-MCO, por sus siglas en inglés).  Un objetivo constante en Carolina del Norte ha sido asegurar que las personas reciban educación y opciones respecto a los entornos menos restrictivos para la vida comunitaria.

La decisión de la Corte Suprema de los EE. UU. en el caso Olmstead contra L.C., 119 S.CT. 2176 (1999) ordenó que los estados atiendan a las personas con discapacidades del desarrollo en el entorno menos restrictivo, según lo especificado en la Ley de Estadounidenses con Discapacidades (ADA, por sus siglas en inglés) de 1990. En diciembre 20 de 2021, Carolina del Norte publicó El Plan Olmstead de Carolina del Norte. La División de Instalaciones de Atención Médica Operadas por el Estado (DSOHF, por sus siglas en inglés) ha contratado al Equipo de ����ý para diseñar e implementar el proyecto “Interés Comunitario de Centros Estatales de Desarrollo” (SDC Community Interest).  El equipo de ����ý aumentará su capacidad mediante el establecimiento de un Consejo Asesor para el Proyecto de Centros Estatales de Desarrollo. El Consejo estará compuesto por 12 a 15 miembros que representarán a expertos en el área de contenido del Diseño Universal, organizaciones de defensa de los derechos de las personas con discapacidades, entidades de gestión local, defensores personales y familiares, y representantes legales para asesorar al equipo del proyecto sobre:

• Materiales educativos para los residentes elegibles de los Centros Estatales de Desarrollo (SDC) y sus tutores legales para promover la planificación centrada en la persona y la toma de decisiones asistida (SDM)
• Aplicación de los principios de Diseño Universal para modificar herramientas de encuesta existentes con el fin de maximizar la participación individual, mediante el uso de comunicación asistida y aumentativa (CAA) y representantes, según se indique.
• Protocolos de capacitación para entrevistadores en el sondeo de individuos con discapacidades intelectuales y del desarrollo y/o necesidades complejas de comunicación
• Proceso de entrevistas para alcanzar aproximadamente a 650 residentes de los 3 Centros Estatales de Desarrollo (SDC) y sus tutores legales.
• Análisis de los datos y el informe para el DSOHF y públicos diversos
• Contribuciones al proyecto “Interés Comunitario de Centros Estatales de Desarrollo” y evaluación de resultados

Gabriel Dichter, PhD

Gabriel Dichter, Associate Director for Research at the CIDD, has been awarded an exploratory grant from NICHD to study linkages between brain functioning and the immune system in autism. The project builds on pilot data collected by Kaitlin Cummings, a clinical psychology graduate student in Dichter’s lab. In addition to Cummings, collaborators on the project include Keely Muscatell (Psychology and Neuroscience), Alana Campbell (Psychiatry), Kinh Truong (Biostatistics), Katherine Meltzoff (UC-Riverside), and Bennett Wood, MSW, a neurodivergent practitioner and former ����ý LEND trainee. The project will use the EEG resources of the ����ý Intellectual and Developmental Disabilities Research Center.

It has long been recognized that individuals with autism are characterized by differences in how the brain processes social rewards. Additionally, several avenues of research indicate that autism is characterized by heightened inflammatory responses. Research by Muscatell has shown that inflammation, the body’s response to physical and psychosocial stressors, impacts social behavior as well as brain circuits that process rewarding information. The goal of this new project is to see if brain function, measured with EEG during social reward processing, is associated with measures of inflammation derived from an analysis of blood levels of inflammatory cytokines in autistic individuals, and how these impact social functioning and quality of life. Additionally, because a portion of study participants have participated in a companion PET study at ����ý, supported by a Neurospark Award from the ����ý Neuroscience Center, the project will also investigate the correspondence between EEG, blood-based markers of inflammation, and PET measures of neuroinflammation.

Diana Cejas, MD, MPH
Principal Investigator

Transition for Youth with Autism and/or Epilepsy

The University of North Carolina has been awarded $2.2 million from the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) to be one of eleven National Transition for Youth with Autism (4 grants) and/or Epilepsy (7 grants) Demonstration Projects.  CIDD community members who contributed to the proposal and will be involved in the project include Diana Cejas (PI) and Anne Harris (Co-PI) alongside Marcia Cordova Roth, Julie Williams-Swiggett, Morgan Parlier, Anna Ward, Kenneth Kelty,  and Margaret DeRamus. Other involved university partners include neurologist Dr. Linn Liu and psychologist Dr. Blaise Morrison.

This five-year project aims to improve national, state, and local/community-level frameworks that support a successful transition from child to adult serving systems for youth with autism and/or epilepsy who have complex health and social needs and require a higher level of family support and coordination. The goal of ����ý’s Whole Brain Health Program (WBHP) is to improve transition outcomes, quality of life and well-being for youth ages 13-26 with Epilepsy and co-occurring intellectual and/or developmental disabilities with or without mental/behavioral health diagnoses, and their families/caregivers as they transition from child to adult systems including pediatric to adult health care, education, employment, and community living. To better serve the many individuals with epilepsy and intellectual developmental disabilities (I/DD) and complex care needs requiring family support and coordination, the ����ý Department of Neurology will partner with the Carolina Institute for Developmental Disabilities (CIDD), the NC Division of Child and Family Wellbeing/CYSHCN Program, and diverse state and community stakeholders including disability and family organizations and individual patients/self-advocates. Funding will expand capacity for a comprehensive, transdisciplinary WBHP Transition Clinic, hire family navigation and peer support staff, train and mentor pediatric and adult healthcare providers, and implement systems science approaches to improve coordination and alignment of existing and emerging transition resources for NC youth with co-occurring epilepsy and intellectual and/or developmental disabilities.

The late Phillip Hettleman, a member of the Carolina class of 1921, and his wife established the award in 1986 to recognize junior faculty members who demonstrate groundbreaking and innovative research along with future career promise. The recipients of the $8,000 prize will be honored at an upcoming Faculty Council meeting and deliver presentations on their research during University Research Week in October.

Dr. Mark Shen is a developmental neuroscientist, Assistant Professor of Psychiatry, and investigator in the Neuroscience Center and Carolina Institute for Developmental Disabilities. Shen discovered an early biomarker for autism — the presence of excessive cerebrospinal fluid volume in the brain — that is detectable by 6 months of age in certain babies, which is two years before they develop autism. His research since then has focused on how CSF cleans the brain of neuroinflammation and how problems with that process can lead to the development of autism in the first years of life.

Whole Community Connection Champion Team (Equipo Campeón de la Conexión de
Comunidad): Morgan Parlier, Margaret DeRamus, Virginia Locklear y Amy Perry

Whole Community Connection (WCC) apoya a grupos de líderes para promover la equidad en la salud en las zonas rurales de Carolina del Norte aumentando el poder local para enfocarse en las prioridades al nivel comunitario creando juntos un modelo de compromiso y de relación. Para aumentar la equidad en la salud sexual y reducir la violencia sexual dentro de la comunidad de discapacidades intelectuales o del desarrollo
(IDD) requiere alianzas comunitarias. Margaret DeRamus, MS, CCC-SLP, y Morgan Parlier, MSW, LCSW, de CIDD, están dirigendo el esfuerzo para reducir la violencia sexual y aumentar la equidad en la salud sexual en la comunidad de IDD en el condado de Robeson en colaboración con Amy Perry, especialista en recursos para Robeson y los condados cercanos, con la Sociedad de Autismo de Carolina del Norte (ASNC) y Virginia Locklear, una miembra de la comunidad local, quien es la directora del Rape Crisis Center of Robeson County (RCCRC) (Centro de Crisis por Violación del Condado de Robeson). Esta asociación comunitaria con ASNC y RCCRC está proporcionando capacitaciones comunitarias para profesionales, familias y autodefensores sobre las mejores prácticas para brindar educación sobre salud sexual a personas con IDD. Además, brindan orientación profesional sobre la mejor manera de promover la equidad en la salud sexual para dar cuidado con conocimiento sobre trauma a los miembros de la comunidad I/DD.
Whole Community Connection Champion Team (Equipo Campeón): Morgan Parlier, Margaret DeRamus, Virginia Locklear y Amy Perry. La asociación también está desarrollando un programa de capacitación para los equipos que ayudan a los casos de agresión sexual sobre la mejor manera de apoyar a los sobrevivientes con IDD. Ambas capacitaciones se anunciarán y se ofrecerán de forma gratuita a los que estén interesados en la comunidad: autodefensores, defensores familiares, miembros del equipo de respuesta a la agresión sexual (SART, por sus siglas en inglés), proveedores médicos, la
policía, educadores, organizaciones de defensa, etc. Ambas capacitaciones se archivarán y estarán disponibles para ver en línea. ASNC traducirá las capacitaciones profesionales y de la comunidad al español. Anticipan una mayor oportunidad para proporcionar educación preventiva, atención equitativa de la salud sexual y una mayor conciencia de la necesidad de esfuerzos continuos para abordar esta epidemia de violencia sexual que afecta a la comunidad IDD en todo el estado.

HEELS 2 Transition (H2T) at ����ý offers a variety of programs to support young adults with intellectual and/or developmental disabilities toward a self-determined life. These range from the HEELS Prep summer transition program, the HEELS UP inclusive postsecondary education program, as well as other programs focusing on daily life skills development. H2T is an interdisciplinary collaboration between the CIDD, TEACCH, ����ý’s School of Education, Division of Occupational Therapy, and Division of Clinical Rehabilitation and Mental Health Counseling, and regional non-profit Fullpower North Carolina.

For more information, visit the H2T website.

The NC-PAL Intellectual and Developmental Disabilities (I/DD) team works with pediatric providers in primary care settings across the state to offer trainings and supports to assist practices in providing high quality care for patients with I/DD and their families. The I/DD team is comprised of psychiatrists, developmental pediatricians, physicians, social workers, and family partners affiliated with the ����ý, the CIDD, and Duke. Service options include family partner-led system navigation training and family support, virtual behavioral consultation, educational offerings, and consultation for practice change.

For more information, visit or contact Kim Schlegel, MSW.