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The Massachusetts Permanent Commission on the Status of Persons with Disabilities hosted a hybrid informational hearing at the Massachusetts State House on May 19, 2025. The hearing brought together healthcare professionals, disability advocates, and state leaders to examine systemic barriers to health equity and elevate disability-inclusive approaches to care.
The event provided a platform for invited subject matter experts to share data, discuss lived experience, and highlight collaborative strategies aimed at advancing equitable healthcare access and outcomes for people with disabilities. While the hearing did not address specific legislation, the Commission emphasized the importance of data-driven findings and community-informed solutions that can shape inclusive health policies and programs.
Speakers include Dr. Craig Andrade, RN, MPH, DrPH, Health Equity Compact; Heather Watkins B.S., Disability Rights Advocate; Nassira Nicola, Massachusetts Department of Public Health; Keith Jones, Disability Rights Advocate; John Madondo, UnitedHealthcare Community Plan; Erica Guimarães, MPH, CCHW, MassHealth; Dr. Joseph Giacino, Ph.D., Spaulding Rehabilitation Network / MGH / Harvard Medical School; Nicole Godaire, Brain Injury Association of Massachusetts; Dr. Linda Long Bellil, Ph.D., JD, UMass Chan Medical School; Maura Sullivan, MPA, The Arc of Massachusetts.
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Boston-Harvard Burn Injury Model System Presents at American Burn Association Conference 2025
Dr. Jefferey Schneider, MD, Principal Investigator of the Boston-Harvard Burn Injury Model System (BHBIMS), leads one of only four Burn Model Systems in the country funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). Dedicated to improving the lives of burn survivors, BHBIMS provides comprehensive, interdisciplinary care—from the moment of injury through rehabilitation and reintegration into daily life. The program is also at the forefront of research on long-term functional and psychosocial outcomes after burn injury, helping to drive innovation and education across the field.
At the 2025 American Burn Association Conference, BHBIMS played a central role through leadership in educational forums and the presentation of new research. Dr. Schneider moderated two key sessions: “Fundamentals of Burn Care: Engaging and Innovating with the Entire Burn Team – Physical Medicine & Rehabilitation” and “Past, Present, Future – Transforming Outcomes Through Deeper Stakeholder Engagement in Burn Care and Research.” Renee C. Noordzij, BS, M3,also led a “Resources Think Tank: Working Together to Optimize Creative Solutions for Burn Survivor Aftercare,” promoting collaboration on survivor support.
In addition to their leadership in discussion forums, BHBIMS researchers presented several impactful studies. Kaitlyn Chacon, BA, presented findings on the “Utilization of Psychological Interventions by Burn Survivors with Depression and Anxiety Symptoms” under the Psychological and Psychosocial track. Dr. Mariana Morales Garcia, MD from the Instituto Nacional de Rehabilitación, shared the Spanish validation of the Life Impact Burn Recovery Evaluation Short Form (LIBRE-SF). Dr. Huan Deng, MSc, PhD, presented two projects: one examining the characteristics of personal social networks associated with social participation outcomes, and another on cardiac parasympathetic deficits in individuals with chronic burn injuries. Renee C. Noordzij, BS, M3, presented two studies under the Aftercare and Reintegration track—one on the prevalence and predictors of stigma in the burn population and another introducing the RESTORE documen:t study focused on aftercare resources. Edward Santos, BS, presented findings on how transportation access impacts care service utilization and community integration.
To learn more about the Burn Model systems
| | This episode of Finding Strength explores the difficult decisions families face when a loved one experiences a severe traumatic brain injury (TBI), particularly regarding provision or withdrawal of life-sustaining treatment. Guest speakers Ms. Deb Jones, Dr. Theresa Williamson, MD, and Dr. Yelena Bodien, Ph.D., discuss the evolving science of prognosis in TBI, the impact of early decisions to withdraw life-sustaining treatment, and the need for improved patient-doctor communication in critical care settings. | | | BIA-MA’s 43rd Annual Brain Injury Conference | | |
On March 26 & 27, 2025, the BIA-MA held their 43rd Annual Brain Injury Conference. Spaulding Rehabilitation staff attended the conference and had an exhibitor table where they promoted services available at our hospitals.
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Research coordinator Ellyn Pier, MPH presented her poster titled "Whose Outcome is it Anyway? A Person-Centered Approach to Outcome After TBI." The project explored what outcomes after traumatic brain injury (TBI) are considered acceptable by people with TBI and their caregivers. Through a crowdsourcing survey, responses from 252 individuals with TBI and 256 caregivers were gathered. Results revealed that participants prioritized basic communication, like answering yes/no questions, as a minimally acceptable outcome. Interestingly, while most respondents valued partial independence, this contrasts with the traditional clinical view that only full independence is a favorable result. Our findings emphasize the need for more person-centered measures in TBI recovery and decision-making.
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| |  | Research coordinator, Ally Sterling, ScM, MBE, presented her poster on the development of a short form “Post-Acute Survey on Severe Disability after Traumatic Brain Injury (PASSD-TBI)” telephone-based caregiver interview to facilitate long-term, standardized assessment of neurobehavioral function in persons with severe disability after brain injury. The PASSD-TBI interview includes items derived from established measures: the Coma Recovery Scale - Revised (CRS-R), the Cognitive Impairment subscale of the Confusion Assessment Protocol (CAP-Cog), and the Galveston Orientation and Amnesia Test (GOAT). Confirmatory factor analysis and Rasch methods yielded a final rating scale short form that is psychometrically sound with 13 items. This short form may contribute to better understanding of longitudinal outcomes after severe brain injury and provides a valid, efficient assessment tool that can be administered remotely to caregivers of persons who are unable to undergo in-person assessment due to medical issues, travel limitations, or other obstacles.
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Aphasia Access Conference 2025
Carla Tierney-Hendricks, PhD, CCC-SLP presented with two recent MGH IHP Communication Sciences and Disorders Masters students: Michelle Brown, MS, SLP-CF and Phoebe Jeng, MS, SLP-CF their research titled “Using the socioecological model to understand transitional care in post-stroke aphasia rehabilitation”
| | | | Introducing our newest TBI Model Systems research coordinator Mario Feranil, MPH. Mario recently joined the Neurorehabilitation Laboratory in March. He comes in with many years of clinical research experience having previously worked in surgery at Beth Israel Lahey Health and mental health at Boston University. He completed an MPH in Epidemiology from Harvard University in 2022. His father’s experience with Parkinson’s disease inspired Mario’s interest in rehabilitation, particularly, neurorehabilitation, and he hopes to contribute to the field through his work here. In his free time, Mario enjoys music and soccer. | | Burn Ambassador Ran in the 2025 Boston Marathon | |
Kaitlyn Chacon with the Boston-Harvard Burn Injury Model System and MKSTC burn ambassador ran in the 129th Boston Marathon as part of the Spaulding Rehabilitation’s Race for Rehab charity program, that supports programs such as adaptive sports. She was inspired to take on the challenge by a burn survivor who ran the marathon many years ago and highlighted the importance of determination to keep moving forward, even in the face of adversity. To see the finish line
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Improving Aphasia Outcomes:
Dr. Tierney-Hendricks Awarded NIDCD K23 Career Development Grant
Dr. Carla Tierney-Hendricks, PhD, CCC-SLP, Director of Health Systems & Implementation Sciences, research fellow in the Rehabilitation Outcome Center, was awarded a K23 career development award through the National Institute of Deafness and other Communication Disorders (NIDCD). Her work aims to co-design a transitional care intervention for aphasia rehabilitation with a community advisory board and test the intervention within clinical care. Her research focuses on improving care delivery and quality of life outcomes for people with aphasia and their families. Carla will be supported by an exceptional, interprofessional mentoring team: Dr. Leora Cherney, PhD, CCC-SLP (Shirley Ryan Ability Lab, Northwestern University), Dr. Janet Prvu Bettger, ScD (University of North Carolina at Chapel Hill), Dr. Jeffrey Schneider, MD (Spaulding Rehabilitation Hospital, Harvard Medical School) and Dr. Ruth Palan Lopez, PhD (MGH Institute of Health Professions).
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Spaulding Hosts State Elected Leaders to Learn About Challenges in Rehab Medicine
Recently, leadership from across Spaulding hosted elected representatives and their staff from the Massachusetts Legislature to review the current landscape of rehabilitation medicine, barriers to care and research as well learn about the important mission work of Spaulding. Representative Daniel J. Ryan and Representative Marjorie C. Decker, Chair of the Committee on Public Health were on hand as well as staff from the Office of Representative Michael J. Moran, the Office of Senator Sal N. DiDomenico, the Office of Representative David M. Rogers, the Office of Senator Patricia D. Jehlen and staff from the House Committee on Public Health.
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February 2–8 marked Burn Awareness Week, a time dedicated to increasing public awareness about burn prevention and care. This year, the Boston-Harvard Burn Model System Team at Spaulding Rehabilitation collaborated with the Mass General Hospital, Brigham and Women's Hospital burn units, and Burn Survivors of New England (BSONE) to spread important information about burn safety and recovery.
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This walk, roll, and run event is a family-friendly fundraiser that brings together individuals and teams to support those affected by brain injury, connect brain injury survivors, and provide brain injury awareness. At the Cere-Bration you have your choice of walking, rolling, or running the 1-mile route.
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DATE
September 27, 2025
LOCATION
Buzzards Bay Recreation Area, Cape Cod Canal
110 Main Street,
Bourne, MA 02532
COST
Survivors: $10
Individuals: $25
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“The Power of Art” SCIboston, Spaulding’s local and regional nonprofit partner for spinal cord injury (SCI), Annual Gala
On March 29, 2025, SCIboston, Spaulding’s local and regional nonprofit partner for spinal cord injury (SCI) hosted its annual gala, which was called “The Power of Art” and showcased the artwork of nine artists with SCI. There were 250 people in attendance, which included Spaulding staff and former patients, who listened to programming that included testimonials of how Spaulding and SCIboston profoundly help the newly injured, their families, and others learn how to live successfully with a SCI through treatment, care, peer mentoring, and support groups.
| | | The Model System Knowledge Translation Center (MSKTC) and our researchers here at Spaulding are proud to present the following infographics and factsheets: | | |
How to Age Successfully with Spinal Cord Injury
This infographic shares information on what to expect as a person ages with SCI. The factsheet provides strategies on how to age successfully with SCI and tips on creating social networks for healthy aging. The factsheet is available in English and Spanish
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Memory and Moderate to Severe Traumatic Brain Injury
This factsheet explains memory problems that may affect people with moderate to severe TBI. It also suggests ways to deal with these problems in everyday life.
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Employment After Traumatic Brain Injury
This factsheet describes the services and supports that are available to help people with TBI return to, find, and keep a job. It gives an overview of vocational rehabilitation (VR). It also offers tips and resources to help people with TBI get ready to go back to work. Finally, the factsheet explains how the Americans with Disabilities Act protects people with TBI from job discrimination.
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Joy and Judy Greene are leading the charge to ensure that wellness programs like Chair Yoga+ At Home remain accessible to all. This inclusive program focuses on breathwork, meditation, and gentle movements that strengthen and lengthen the body, making it ideal for participants of all mobility levels. Each session begins with mindful breathing exercises to help ground participants in the present moment, followed by a seated yoga practice that thoughtfully connects breath with movement.
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IKEA launches BÄSINGEN - A helping hand at home
Life at home is in constant change and the needs that people have at home can shift quickly. IKEA launches BÄSINGEN, an inclusive design for the many, consisting of six products designed for convenient support in the bathroom and throughout the rest of the home.
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New TBI Classification System Aims to Improve Diagnoses and Treatment
After more than 50 years, the medical community is moving towards a new traumatic brain injury (TBI) classification system.
Today, a coalition of experts from 14 countries proposed a new way to evaluate TBI patients that is expected to lead to more accurate diagnoses and more appropriate treatment plans.
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Caption with Intention
Introducing Caption with Intention, a revolutionary caption design system that will better convey the magic of cinema for the Deaf and Hard of Hearing community.
Around the world, 466 million people live with hearing disabilities and rely on captions for the verbal and sonic cues that are so much a part of the film viewing experience. Yet, in the 50 years since its introduction, this system hasn’t evolved. Caption with Intention aims to remedy this.
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Contact us at: srnoutcomescenter@partners.org
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