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News from the Shriver Center

Keep up-to-date with our latest news and happenings.

Dr. Sarabeth Broder-Fingert named Shriver Center Deputy Director

Dr. Sarabeth Broder-Fingert was recently promoted to Deputy Director of the Shriver Center.  In this new role, Dr. Broder-Fingert will assume more supervisory responsibilities, help with new faculty recruitment, support fundraising efforts, and collaborate on increasing the Center’s overall visibility through an enhanced public relations strategy.

Dr. Broder-Fingert joined UMass Chan Medical School in July of 2021, as Associate Director of Research, Shriver Center, while also assuming the role as Vice Chair of Clinical Research in the Department of Pediatrics. Prior to that, she was at Boston University School of Medicine. Since joining the Shriver Center, she has secured new and substantial funding to pursue research on autism among underrepresented populations and to conduct clinical training.

Dr. Broder-Fingert also was recently selected to be the new Chief of the Division of Developmental and Behavioral Pediatrics at UMass Memorial/UMass Chan, and was recently promoted to Professor in Pediatrics.

“We feel extremely lucky to have Dr. Broder-Fingert on our team in this new capacity and look forward to her helping the Shriver Center grow into the next phase of programing, research, and clinical services,” said Dr. Jean Frazier, Executive Director of the Shriver Center.

Picture of Dr. Sarabeth Broder-Fingert

VaxAbilities Clinics Provide Positive Solutions For The Disability Community.

Remember what it was like to be a kid and needing to get a shot at the doctor’s office? Chances are, it was probably not your favorite activity.

For many people with disabilities, especially children, getting a shot can become so traumatizing that it prevents the individual from becoming vaccinated. Often parents don’t know where to turn when the usual vaccination channels don’t address sensory issues and other challenges faced by individuals with disabilities and their families.

An initiative led by the Eunice Kennedy Shriver Center at the UMass Chan Medical School is doing its part to provide vaccination support to the disability community.

The VaxAbilities initiative aims to ensure that people with developmental disabilities and other sensory support needs have the most comfortable and positive vaccination experience possible.

The project was developed in collaboration with the other partners of the Developmental Disabilities Network in Massachusetts, the Institute for Community Inclusion at UMass Boston and Boston Children’s Hospital, the Disability Law Center and the Massachusetts Developmental Disabilities Council, all of which received funding from the U.S. Administration on Community Living to support vaccinating people with disabilities and their caregivers. While this initiative was originally designed for people with intellectual and developmental disabilities, it welcomed people with other types of disabilities of all ages.

The innovative VaxAbilities model uses a team-based approach, bringing together sensory-trained professionals and staff with vaccinating clinicians, and provides training on strategies and the use of materials to support a range of needs for children and adults. A combination of sensory materials, desensitizing materials (such as cold, vibration, and pain blocking devices), along with positioning and coaching strategies provide a more positive, comfortable experience.

A partnership with the MA Executive Offices of Health and Human Services and vaccination vendors allows the VaxAbilities team to provide training, personnel, and material resources to state-sponsored events across the Commonwealth. Clinicians and students from a wide range of disciplines and institutions across the Commonwealth take part. Disciplines include medicine, nursing, and public health, among others.

The VaxAbilities program also matches a core tenet of the Shriver Center’s mission:  prioritizing care and attention for individuals with disabilities and their families, a population who often has additional, unseen difficulties involving medical appointments and receiving vaccinations.  As such, the Vaxabilities program has a future goal of providing safe and comfortable access to other vaccines beyond COVID and helping to normalize the experience of receiving a shot.

To date, over 1,100 vaccinations have been successfully delivered through VaxAbilities clinics.

To learn more about the VaxAbilities project (including dates of future clinics) and read feedback from satisfied parents, please visit  www.VaxAbilities.com

SHRIVER CENTER’S ECHO AUTISM PROJECTS ADDRESS MAJOR GAPS IN CARE

Throughout its 50 plus year history, the Shriver Center has been at the forefront of improving the lives of individuals with disabilities, their families, and caregivers through education, research, and service.  Two innovative projects advance that tradition, and the leaders for each project recently spoke about the impact and long-term goals of their work addressing gaps in autism care.

“Both projects are a result of direct community needs. My project is a six-month autism diagnosis training using the Extension for Community Healthcare Outcomes (ECHO Autism) online learning platform,” said Dr. Sarabeth Broder-Fingert, Associate Director of Research for the Shriver Center.

Using this platform, Dr. Broder-Fingert trains pediatricians, residents, and health professionals in identifying the signs and hallmarks of autism spectrum disorder (ASD) through evidence-based case discussions and didactics.  “The majority of our trainees are primary care providers (PCPs).  However, a variety of other disciplines are also represented, including family medicine, medicine-pediatrics, speech-language pathology, and social work,” Dr. Broder-Fingert continued. 

Dr. Broder-Fingert’s project is supported by the Autism Cares Network, which is funded by Autism Speaks.  Over 65 people applied for the training and a cohort of 12 was accepted for the project, launched in January 2023.  She elaborated that this is the first time all trainees will receive instruction in autism diagnosis, specifically using the Childhood Autism Rating Scale (CARS) and Rapid Interactive Screening Test for Autism in Toddlers (RITA-T).  After gaining familiarity with the tests, the goal is to successfully integrate this new knowledge into their professional practices.

“ECHO is an ideal platform for this training.  It allows for ongoing supervision, support, and feedback throughout the process as well, which is essential in assessing long-term effectiveness,” Dr. Broder-Fingert commented.

Dr. Broder-Fingert is hopeful that the increased familiarity with autism diagnosis from this training will soon provide tangible benefits to individuals with ASD, their caregivers, and support teams.  “Autism diagnosis is a major crisis in Massachusetts right now. Families are waiting more than a year for appointments, and there is a shortage of providers trained in making the diagnosis, particularly in under-represented or minority communities.  If an accurate diagnosis of ASD can be quickly made, an individual or family can begin the process of accessing needed services, which may have vast positive impacts on their quality of life,” she concluded.

Dr. Jean Frazier, Executive Director of the Eunice Kennedy Shriver Center, is also using the ECHO Autism online platform for her project entitled “ECHO Autism: Crisis Care” on training mobile crisis intervention teams (MCIs) across Massachusetts.

Dr. Frazier and her team established the MCPAP ASD-ID telehealth program in July 2020 to help support MCI teams and emergency service providersin their work with children and young adults during the midst of a behavioral health crisis.  ECHO Autism: Crisis Care is an educational platform that was recently launched to augment the work of MCPAP ASD-ID.

“There are 26 MCI teams throughout the state.  Our goal is to train those teams about the best evidence-based practices so that they can more readily assist children and young adults with ASD or intellectual or developmental disabilities (I/DD) during a behavioral health crisis,” Dr. Frazier elaborated.

Members of the MCI teams are primarily social workers or licensed mental health clinicians who visit homes and/or schools to conduct assessments on individuals experiencing a behavioral health crisis, with the goal of avoiding hospitalization.

Dr. Frazier’s ECHO project is funded by MassHealth and is currently in the pilot testing phase. There are two sessions per month for six months for a total of 12 educational sessions.  Approximately five to ten people attend each session.  Dr. Frazier expects that the total number will expand to approximately 120 throughout the remaining 18-month course of this project.

“In the short-term, our goal is to increase the knowledge and comfort of the MCI teams  in working with individuals with ASD and I/DD.  Long-term, one of our aims is to reduce the number of children and adults with autism and/or I/DD who are boarding in emergency rooms, and to reduce the number of these individuals who require inpatient hospitalization by increasing the number of community mental health clinicians who have expertise in working with these populations.” Dr. Frazier said.

Lastly, Dr. Frazier explained how the Shriver Center is uniquely positioned to take on educational projects like these two ECHO programs.

“Between the care we provide to patients, the evidence from literature, our daily observations, and the stories we hear from parents and families, it’s clear that training programs like these are vitally needed.  We’re excited to fulfill our mission, through these two efforts, making a meaningful difference in the lives of people with autism and intellectual and developmental disabilities,” she concluded.

Shriver Center’s Carol Curtin featured on Dean’s Council Profile

Longtime UMass Chan employee augments career with PhD, pays it forward

Carol Curtin

“I had always wanted to get a PhD, but various factors over the years made that difficult. I was thrilled to have this opportunity and to be able to do so while still working full time at UMass Chan Medical School.”

Dr. Carol Curtin’s educational path didn’t follow the traditional timeline. She earned a PhD from the Morningside Graduate School of Biomedical Sciences in the Clinical & Population Health Research (CPHR) program at the age of 57, but “I took it on with the seriousness of purpose that was more intense than when I was younger,” she said.

Dr. Curtin said she was always a good student, but that because she was earning her PhD in the middle of her career, rather than at the beginning, she was clear about what she wanted to learn, why she was there, and “I just gave it everything I had,” she said.

But Dr. Curtin’s time at UMass Chan began even before she enrolled in the CPHR program. She joined the Eunice Kennedy Shriver Center in 2002 where she was asked to spearhead a new research program on health promotion for children and youth with developmental disabilities. She had research training from her undergraduate and graduate degrees but felt that there were gaps in her knowledge and training that a PhD would fill. When the CPHR PhD program became available part-time for UMass Chan employees in 2010, Dr. Curtin couldn’t pass up the opportunity to fulfill a lifelong dream.

“The CPHR program had all the coursework I needed to round out my knowledge and skills with its emphasis on epidemiology and biostatistics. I couldn’t believe what a perfect fit it was for me and my learning needs—I grew tremendously from the experience and learned more than I could have ever hoped for,” she said of the experience.

Prior to joining the Shriver Center, Dr. Curtin began her career as a clinical social worker. While she enjoyed the research aspect of her studies in undergrad and graduate school, she said she didn’t yet know what research questions she wanted to answer. But she did know what clinical questions she wanted to address, so she began her career working in community mental health. She later switched her focus to working with children with developmental disabilities, which led her to a passion for program development, leadership and administration. That clinical background rounded out the knowledge from earning her PhD and has made her a better researcher.

“It was important to have had those years of clinical experience and to learn to run programs, and manage budgets and personnel. I felt that because of my years in the field, I had a pretty solid sense of what some of the issues were—it wasn’t just a research-informed experience, it was also a clinically-informed experience,” said Curtin.

Dr. Curtin currently serves as the associate director of the Shriver Center, but “I wear many hats,” she said. She is the director of several large programs within the Shriver Center, including the Leadership Education in Neurodevelopmental Disabilities program, which is a large training program for clinicians, public health and other professionals, family members, and people with disabilities who want to effect change in services for children with disabilities and their families.

She is also the director of the University Center for Excellence in Developmental Disabilities program, which is focused on research, training, service, and information dissemination efforts in support of people with disabilities and their families. In addition, she is the co-director of the Healthy Weight Research Network, funded by the Maternal Child Health Bureau, which is focused on research efforts to promote healthy weight in children and youth with autism and other developmental disabilities.

Dr. Curtin said that earning a PhD is one of the best things she has ever done and as a result, she has continued to support the next generation of researchers.

“As both a student and a faculty member, I deeply value education, research, and service, and I am very committed and proud to be part of UMass Chan Medical School,” she said. “Investment in the Medical School is money well spent—the UMass Chan programs are innovative, cutting edge, and serve those who often go without.

“Because we are a state school, some may assume that we receive a large portion of state funding, but this is not the case,” she continued. “Our success depends on our ability to leverage external funding and on philanthropy. Philanthropy is particularly important, as it allows the school to build new programs, build new facilities, and use funds where there is greatest need. Investing in UMass Chan is an investment in the future health of our communities.”

Shriver Center Awarded $4.3 Million Grant from NIHM to Research Autism Measurement

The Eunice Kennedy Shriver Center at UMass Chan Medical School is thrilled to announce a $4.3 million grant from the National Institute of Mental Health (NIHM).

The 5-year grant will be used to conduct the largest ever research study to understand the barriers to care for limited English proficiency (LEP) families with children with autism spectrum disorder (ASD).

“Because these families have been systematically excluded from ASD research, there is a lack of data to address the disparities that exist when it comes to receiving care. Our results will drive measures to be used in future studies of ASD interventions, from treatment trials to policy initiatives, and directly align with the NIMH’s focus on reducing disparities ASD treatment,” said Dr. Sarabeth Broder-Fingert, Principal Investigator on the project.

The research will consist of a multi-lingual, national survey of families of underserved children with ASD to understand what patient, provider, and structural factors are associated with disparities in care for families with LEP. The research will be conducted in five languages (Spanish, Haitian-Creole, Vietnamese, Mandarin, English) and supported by the Autism Cares Network (ACN), a national network of 20 large, geographically diverse hospital systems focused on improving care for ASD.

Once the survey research is complete, qualitative interviews will be conducted to better understand survey findings and place them in context to make recommendations for data and policy decisions to drive change.

Picture of Dr. Sarabeth Broder-Fingert

Shriver Center Awarded Five Year UCEDD Grant Renewal

The Eunice Kennedy Shriver Center at UMass Chan Medical School is extremely pleased to announce the renewal of its five-year University Center for Excellence in Developmental Disabilities (UCEDD) grant.  Providing $3M over the next 5 years, this award continues a decades-long funding source of support to further the Shriver Center’s mission to conduct education, research, and services to improve the lives of individuals with intellectual and developmental disabilities (I/DD) and their families and caregivers.

“The Shriver Center is among the oldest UCEDDs in the country. This core funding enables Shriver Center faculty and staff to conduct their work, leverage external funding to support their projects and programs, and develop new initiatives, all to benefit individuals with I/DD and their families,” said Carol Curtin, PHD, UCEDD Principal Investigator and Director, Professor of Family Medicine and Psychiatry at UMass Chan Medical School.

“In past years, UCEDD funding has been used to launch new programs such as the Insurance Resource Center for Autism and Behavioral Health, our Healthy People/Healthy Communities health promotion research program, and the Pathways to Inclusive Health Care (PIHC), training program, to name a few.  The funding also continues to provide partial support for many other programs and initiatives at the Shriver Center,” Dr. Curtin continued.

The Shriver Center UCEDD is part of a nationwide network comprising 67 UCEDDs across the country. This network is authorized under Public Law 106-402, the Developmental Disabilities Assistance and Bill of Rights Act of 2000, and is funded by the Office of Intellectual and Developmental Disabilities (OIDD) within the Administration on Community Living (ACL).

Sue Swanson selected as Commonwealth Heroine.

Sue Swanson with State Representative David LeBoeuf

Congratulations to Sue Swanson, Project Coordinator for Pathways for Inclusive Health Care at the Shriver Center! Sue was nominated by State Rep. David LeBoeuf and selected by the Mass Commission on the Status of Women to be a Commonwealth Heroine Class of 2022. She was recognized for her efforts to get the city of Worcester to construct Coes Park, the first multi-generational and universally accessible playground.

Each year the Commission partners with state legislators to honor incredible women who are recognized as leaders and contributors to their community, and are selected because they use their time, talent, spirit, and enthusiasm to enrich the lives of others. Sue has committed herself to advocating for those with different abilities, promoting authentic inclusivity, and making sure disability equity is at the forefront of community planning. The City of Worcester and Central Mass are a healthier, more inclusive place because of her continued efforts.


 

 

 

Shriver Center Employee Spotlight: Sarabeth Broder-Fingert, MD, MPH

As part of our Employee Spotlight series, Sarabeth Broder-Fingert, MD, MPH recently sat down with us to discuss her professional responsibilities at the Shriver Center, and what makes the Shriver Center such a special place to work.

Q:  How long have you worked at the Shriver Center?
A:  I started in July of 2021

Q:  What is your current job title?
A:   Associate Director for Research

Q:  What does that entail?
A:  I conduct my own research on early autism diagnosis and treatment, and also help others at the Shriver Center conduct their research. In addition, I help think about our research goals across the center, where to focus our resources and energy trying to grow the research we conduct, and how to make sure everything we do is conducted with an equitable, community-focused approach.

Q:  What do you find most rewarding about that job?
A:  I love supporting others in their research, particularly when I get to witness the direct impact of that work on children and families.

Q:  Are you currently working on any research or projects that you would like to discuss?
A: One project I am really excited about is a study called “RISE” (Reciprocal Imitation and Social Engagement). RISE is an NIH-funded multisite network) studying Reciprocal Imitation Training (RIT) a Naturalistic Developmental Behavioral Intervention (NDBI) for early social communication delay. The study is embedded in the Part C Early Intervention system across these four states. You can find out more at  https://www.riseresearchnetwork.com.

Q:  Do you have any additional responsibilities at Shriver?
A:  Not yet!

Q:  Why is working at the Shriver Center meaningful to you?
A:  It is an amazing group of smart, passionate, dedicated people who are working to make the world a better place – I feel so lucky!

Q:  What are some of your passions and interests away from Shriver?
A:  In my personal life, I spend a lot of time with my family. I coach my 8-year old in soccer in Newton, with three practices and one game per week it keeps me pretty busy! My wife coaches my 6-year old twins in soccer, my 8-year old in softball, and all three kids in hockey. I also spend time at my gym, CrossFit Newton, where I recently won the “most pained face” competition!

David Kennedy Awarded $6 Million ReproNim Brain Imaging Grant

UMass Chan Medical School neuroinformatics expert David Kennedy, PhD, has been awarded a five-year, $6 million grant renewal for ReproNim: A Center for Reproducible Neuroimaging Computation. ReproNim aims to improve the reproducibility of neuroimaging science and extend the value of the national investment in infrastructure that supports brain imaging research. UMass Chan is at the forefront of this work, which holds promise for advances in neuroscience.

Link to the full article: https://www.umassmed.edu/news/news-archives/2022/02/david-kennedy-awarded-$6-million-repronim-brain-imaging-grant/

INDEX COVID-19 Information and Resources

INDEX Takes Leadership Role In Sharing COVID-19 Resources

INDEX, a program of the Eunice Kennedy Shriver Center, dedicated to research, education, and service related to developmental disabilities, has taken a leadership role during the COVID-19 pandemic. INDEX’s “Resource List’ presents information about COVID-19, along with its impacts, effects, and preventative measures, geared to individuals with intellectual and developmental disabilities (and their families). This resource offers information about COVID-19 in a variety of ways, including: 

  • Providing documents in “plain language” to assist with readability and comprehension
  • Using illustrations and examples of behavior designed to prevent the spread of COVID 19
  • Highlighting the latest guidance from Massachusetts governmental officials as a verified, reliable, source of information

The resource list is regularly updated, and can be found at: https://disabilityinfo.org/directory-of-disability-related-websites/emergency-preparedness-resources/covid-19-emergency-information/