Fall 2013 Newsletter
Mark Your Calendars for the 2014 KiM Series!
The January 30, 2014 lecture and webcast will feature Ricardo Battaglino PhD, from the Harvard School of Dental Medicine and The Forsyth Institute. Dr. Battaglino will discuss a new project in collaboration with Dr. Alpdogan Kantarci (Forsyth), Dr. Hatice Hasturk (Forsyth), and Dr. Leslie Morse (Spaulding-Harvard SCI Model System), to assess the neuroregenerative properties of dental pulp stem cells and their future potential to improve neurological outcomes in SCI. Teeth (including baby teeth, wisdom teeth, and healthy molars) are a rich source of neural crest stem cells that can be directed to grow into functionally active elements of the nervous system. Dental pulp stem cells can be obtained and used in clinical trials without the ethical concerns associated with embryonic stem cells. It’s possible that dental pulp stem cells could be made widely available to advance research at a faster pace towards functional improvement and, ultimately, a cure. This lecture will take place at Spaulding Rehabilitation Hospital in Charlestown, MA; it will also be available as a live webcast.
Registration information and additional details about upcoming Knowledge in Motion education programs are available on the NERSCIC website. (Please check for updates to the 2014 KiM schedule, as dates may change.) If you’re not already receiving email updates about KiM SCI programs, please join our mailing list.
Upcoming KiM Lecture & Webcast Schedule:
January 30, 2014
April 10, 2014
June 5, 2014
October 16, 2014
Dr. Alan Jette Honored by Institute of Medicine
Photo by Kalman Zabarsky … Dr. Jette
Please join the NERSCIC Team in congratulating our Principal Investigator and Health & Disability Research Institute Director Dr. Alan Jette on his well-deserved appointment to the Institute of Medicine (IOM), one of the four National Academies of health and science. The IOM asks and answers the nation’s most pressing questions about health and health care, and provides unbiased and authoritative advice to decision makers and the public to help inform their health and health care choices.
In a news release on the Institute’s website on October 21st, IOM President Harvey V. Fineberg noted that “Election to the IOM is considered one of the highest honors in the fields of health and medicine and recognizes individuals who have demonstrated outstanding professional achievement and commitment to service.” With this appointment, Dr. Jette joins nearly 2,000 other medical professionals who seek to tackle 
today’s most pressing healthcare challenges.
Dr. Jette and fellow appointee, Dr. Brian Jack of the Boston University School of Medicine, were highlighted in a recent issue of Bostonia. To learn more about Dr. Jette’s commitment and contributions to disability research, please visit the Boston University School of Public Health website.
Study Spotlight
National Spinal Cord Injury Database Project
NERSCIC is one of 14 Spinal Cord Injury Model Systems (SCIMS) across the US that serve as “models” of excellence in specialized programs of care for people with SCI. Every Model System conducts a variety of research studies to improve recovery and functional outcomes after SCI, but there is one study that all Model Systems contribute data to – the National Spinal Cord Injury Database project.
The National SCI Database began in 1973 and contains information collected by all SCI Model Systems on over 30,000 individuals with traumatic spinal cord injuries. This is the largest SCI database in the world! Researchers use the database to learn more about important issues that affect people with SCI throughout their lives in areas such as medical rehabilitation, health and wellness, and technology. For instance, over the last 10 years we have discovered:
- If you use an indwelling catheter and have been having trouble with health problems like urinary tract infections, they may be related to the catheter. Indwelling catheters are connected to more medical complications and related hospitalizations than other ways of managing your bladder. More research is needed to understand who might benefit from using a different form of bladder management. In the meantime, if you are having this problem, talk to your doctor to see what can be done.
- Preventing pressure ulcers – and treating them early – is very important for everyone, especially as people age with an SCI. Why? Because researchers discovered that people with SCI have a greater risk of getting pressure ulcers around 15 years after they were first injured. In addition, pressure ulcers are more common for people 50 years and older than for any other age group. Pressure ulcers are also more common now – across all age groups – than they were 25 years ago.
- While you may have heard that people with SCI are living longer now than in the past, findings from the National SCI Database show that this is not really true. However, it is true that over the last 30 years more people are surviving the first two years after an SCI. This may be due to improvements in care right after injury.
- As the general population ages, more people are injured as a result of falls later in life. Falls are now the 2nd leading cause of SCI, after motor vehicle accidents. Understanding this helps us to put more time and effort into preventing these kinds of accidents and to learning more about the specific needs of treating older adults with SCI.
Findings like these help researchers prioritize what to study next to try to improve the lives of people with SCI. This type of information also helps people with SCI and care providers to understand more about the best care and treatments that are available. Database findings, such as information about health care costs for SCI, can also help to create or change laws and policies. More up-to-date information about SCI from the National SCI Database is available in the listings of Facts and Figures at a Glance (available in English and Spanish) and Recent Trends in Causes of SCI.
The SCI Model Systems don’t just gather and study information. We also work closely with the Model Systems Knowledge Translation Center (MSKTC) to make sure that Database findings are shared with the people for whom it matters most: people living with SCI as well as family members, healthcare providers and rehabilitation professionals, educators, policy-makers, and the general public. One way we do this is by offering the MSKTC Consumer Fact Sheets, which provide important information on a variety of topics. Our goal is to give people important and timely information to help them make the best decisions possible in managing SCI throughout their lives. The MSKTC also puts together Quick Reviews of Model Systems Research for consumers, which summarize important findings from new research in a way that’s easy to understand.
The SCI Model Systems also work to make sure important research findings are used to create the most effective SCI treatment and care techniques possible. We do this by sharing findings from the National SCI Database with other researchers and leading rehabilitation professionals through peer-reviewed journals, national professional meetings, and Systematic Reviews of all the research articles published about important health topics.
As one of the first centers to be selected as an SCI Model System, NERSCIC data collectors have enrolled people with new injuries and contacted participants for follow-up interviews for over 40 years. If you received your acute inpatient rehabilitation at Boston Medical Center (previously named Boston City Hospital, University Hospital, and Boston University Medical Center), Gaylord Hospital, or Hospital for Special Care, and you are participating in the National SCI Database project, a NERSCIC data collector will contact you beginning one year after injury and every five years thereafter for follow-up interviews. Interviews take up to 30 minutes by phone, and we will give you $25 for each interview for your time and 
continued participation. Your name, address, and other personal information are not included in the study and will never be made public.
If you’ve moved, have a new phone number, or think you’re participating in the National SCI Database project but have not heard from NERSCIC staff recently, we may be trying to reach you! Please call us at 1-866-607-1804 or email SCIctr@bu.edu. We will be able to confirm your participation and check to see when you are due for a follow-up interview. All of us at NERSCIC appreciate your continued participation, which is vital to the success of the National Spinal Cord Injury Database project and its work to help improve the lives of people with SCI.
New England Standard of Care is Now…
The New England Standard of Care (NESoC) has changed its name to the New England Spinal Cord Injury Toolkit (NESCIT), with a tag line of “guidelines, resources, and shared expertise.” Our new name better reflects the overarching goal of the group to improve care by providing SCI-specific resources and clinical expertise to facilities, organizations, and care providers throughout the New England area. NESCIT facilities include Boston University Health & Disability Research Institute, Gaylord Specialty Healthcare, Hospital for Special Care, Northeast Rehabilitation Hospital, Spaulding Rehabilitation Hospital, Commonwealth Community Care (formerly BCMG), Braintree Rehabilitation Hospital, and the newest addition, Mount Sinai Rehabilitation Hospital/Saint Frances Hospital.
One of our main objectives is to provide each person who is being discharged from a NESCIT facility with a complete SCI toolkit, to share with their providers/caregivers at their next destination (e.g., other hospitals, skilled nursing facilities, or home). As providers/caregivers use the toolkit, they will have the opportunity to read information and view various videos describing each topic as it affects people with SCI, what to expect, and how to address presenting issues. Each topic will have listed as an additional resource a NESCIT-trained medical professional who will be available for one-on-one conversations with any interested provider/caregiver.
The treatment topics covered in the toolkit currently include Patient/Family/Caregiver Education, Autonomic Dysreflexia, Skin Care, Bladder and Bowel Management, Sexual Health and Fertility, and Spasticity. For each topic, the toolkit includes a standard for SCI care, minimum requirements for care, and a set of recommended resources. NESCIT participating members compiled resources based on their clinical expertise as being the most helpful, easy to follow, and pertinent to each topic.
During the pilot test, NERSCIC will be sharing the toolkit with several skilled nursing facilities and local hospitals. We will be using feedback and suggestions from these facilities to tailor the toolkit into a useful and easy to follow format. Once completed, the toolkit will be available for use by any person or facility that is interested in learning more about SCI care. For information on participating in the NESCIT beta test, facilities should email SCIctr@bu.edu or call 1-866-607-1804.
Looking for SCI-Friendly Health Care?
We need your input to recommend providers for people with SCI throughout the region. In July, the New England Regional Spinal Cord Injury Center Model System launched a brief online survey to identify health care providers who deliver an excellent health care experience for people with SCI. The main goal of the survey is to put together a list of SCI-friendly health care providers who offer exceptional knowledge, accessibility, and “bed-side” manner. Consumers living with SCI have answered the survey with valuable information about providers in family practice, physiatry, mental health, internal medicine, and SCI-related specialty care, as well as dentists and durable medical equipment providers. The resulting list of recommended providers will be made available to consumers and providers in 
New England (Massachusetts, Connecticut, New Hampshire, Maine, Rhode Island, and Vermont, with the potential for expansion to other regions) to increase access to high quality health care.
You can access the survey online at http://tinyurl.com/nerscicsurvey. Your invaluable input will make a huge difference to others looking for the best care possible, while you’ll also be able to benefit from the feedback of others completing the survey. If you are interested in completing a hard copy of the survey, please contact Judi at JudiZ@bu.edu or call 617-638-7314 or 866-607-1804 (toll free).
Do you hear about other people skiing
and think you don’t have the ability or resources to try it yourself?
Photo by NEDS- Alpine Skiing
Thanks to a generous grant from the Neilsen Foundation, New England Disabled Sports in Lincoln, NH is offering an opportunity for new students to give skiing a try. Funding covers two nights lodging for an individual living with SCI and his or her family, along with lessons, meals, and transportation costs. This program is available to new students on a first come, first serve basis during the upcoming winter season, which begins December 14, 2013.
For additional information:
Please contact Jack Daly at jdaly@nedisabledsports.org
or call 603-745-9333
Snow and Winter Sports are on the Way!
Photo by NEDS- Nordic Skiing
As colder weather approaches, so does another season of skiing, snowboarding, and hot cocoa! Sports and recreation activities offer excellent opportunities to challenge your physical and mental abilities; develop confidence, strength, and endurance; socialize and participate in activities along-side able-bodied family members and friends; and most importantly, have a lot of fun! There are many options for both athletes and novices that utilize different types of equipment (sit-skis, seated ice sleds, etc.) to accommodate all levels of ability. Outdoor winter sports and activities range from downhill skiing, cross-country skiing, and snowboarding to sled hockey, sled skating, and wheelchair ice skating. Health professionals stress the importance of getting involved in sports and recreation and there are good reasons why…
A 2009 study on sports and employment commissioned by Disabled Sports USA (DS/USA) has shown that people involved in the DS/USA program reported greater life satisfaction and were more social and positive about their life prospects than other adults with disabilities in the US. Those who participated were almost 20% more likely to be employed than those who were not physically active. Program participants were 27% more likely to have a healthier lifestyle, 34% more likely to be physically active, and 26% more likely to lead a fulfilling life than other adults with disabilities. To learn more about how you can get involved in sports and recreation activities, check out the NERSCIC video on Adaptive Sports and Recreation for Individuals with SCI, presented by Northeast Passage.
Whether you’re experienced or interested in participating for the first time, New England has the best to offer for winter sports, and several organizations are hard at work to create excellent programs for individuals with mobility issues. For information on programs that best match your winter activity interests, check out Winter Sports Resources on the NERSCIC website.
NERSCIC Takes Leadership Role in State-Wide Health Policy:
The Health and Disability Partnership
Ms. Bethlyn Houlihan, Associate Director for NERSCIC, along with Mr. Dennis Heaphy of the Disability Policy Consortium, recently became Co-Chairs of the Health and Disability Partnership. “The Partnership,” as it is called, is part of the Health and Disability Program (HDP), which has been funded by the Center for Disease Control and Prevention (CDC) since 1989. In the tradition of the Office on Health & Disability The Partnership has been involved with HDP for the past seven years – evolving as time has passed. In its current form, the Partnership has been meeting for about a year. With more than two dozen members of various backgrounds, ranging from statewide and local advocates and organizations to university research centers and individual consumers, the diversity of the Partnership brings together an expansive array of expertise and knowledge. These varying perspectives are useful in collaborative efforts to integrate people with disabilities into broader public health programs and policies. Simply put, the Partnership is the compass ensuring that the HDP’s work always follows the path of “nothing about us without us.”
Current Partnership members include:
- Commonwealth Community Care (CCC)
- DEAF Inc.
- Disability Policy Consortium (DPC)
- MA Dept. of Public Health, Sexual Assault Prevention and Survivor Services
- MRC Home Care Assistance Program
- Multicultural Independent Living Center- Boston (MILCB )
- New England Paralyzed Veterans of America (NEPVA)
- New England Regional Spinal Cord Injury Center (NERSCIC)
- University of Massachusetts Medical School, Center for Health Policy and Research (UMMS/CHPR)
The Partnership meets regularly with the goal of improving the public health of people with disabilities in Massachusetts. Partnership efforts to create, shape or implement projects include: the Massachusetts Disability and Health program, policy initiatives, statewide needs assessment efforts, information dissemination endeavors, and ongoing reviews of evaluation and surveillance data.
This year has been one of many activities and accomplishments. In May 2013, Partnership members disseminated a needs assessment of the health of people with disabilities in MA for the HDP to their constituents and disability networks, receiving back a remarkable 800+ responses within a month! The results of the assessment will be written up in a report by the UMMS/CHPR and MDPH staff and will be disseminated statewide via the Partnership. Additionally, the Partnership has developed a working relationship with the CDC-funded “Mass in Motion” (MiM) program to promote inclusion of people with disabilities in MiM’s community-level wellness initiatives. The Partnership also has two subcommittee that are currently addressing how to ensure the continuation of the Partnership to impact disability health/health care policy moving forward, as well as how best to evaluate access to health care facilities and health screenings for people with disabilities. (Though hard to believe, there’s no easy way to do this.)
Another goal of the HDP is to provide information to people with disabilities that will help them advocate effectively in their communities. Each year, the HDP reports on data from a state-wide survey that includes information about access to primary care and how much people with disabilities smoke, drink, and exercise, among other topics. We would love to hear of any topics you would like to know more about that impact people who use wheelchairs – because, as the saying goes, knowledge is power! If you have any ideas/suggestions or any other comments, please email us at SCIctr@bu.edu.
The One Care Health Plan is Here!
Massachusetts now offers One Care as a new and easier option for people with disabilities living in the Commonwealth to get the services provided by both MassHealth and Medicare in a single plan. One Care also provides a care coordinator who works with you and your care team to coordinate the care you need from all your care providers (including primary and specialty care, dental and vision services, all prescriptions, home-based services, peer support services, etc.). To join One Care, you must be eligible for both MassHealth and Medicare, be between 21 and 64 years old, and not have any other health insurance. Please visit www.mass.gov/masshealth/onecare, or call 1-800-841-2900 for more information and answers to frequently asked questions such as how to sign up for One Care; what to do if you do not want to join One Care; how to find out if your providers are part of One Care, or how they can be added to the One Care network; etc.
Important note: Anyone who is eligible for One Care may be automatically enrolled in the program unless they choose to opt out. Call 1-800-841-2900 Monday through Friday from 8:00 AM- 5:00 PM to tell MassHealth whether you do or do not want to enroll in a One Care plan.
Emergency Preparedness Reminder
With winter weather approaching, it’s important to review and update your emergency preparedness plan as necessary. As recent extreme weather and other events have shown us, weather and other emergencies can happen anywhere anytime, so please do what you can to be prepared! For more information, view the Knowledge in Motion video and related handouts on Developing a Personal Emergency Preparedness Plan for Individuals with SCI on the NERSCIC website.
Working 2 Walk Symposium a Huge Success!
A terrific turnout of scientists, clinicians, and advocates− attending from as far away as Japan− gathered at the Unite 2 Fight Paralysis’ 2013 Working 2 Walk (W2W) Symposium in Boston this September. The symposium featured Travis Roy as the Keynote Address speaker, as well as an outstanding group of presenters from the research, translation, rehabilitation, and advocacy fields. NERSCIC was pleased to serve as the organizing partner and to engage the New England SCI community in this 2-day research and advocacy-focused opportunity.
Videos of the 2013 W2W presentations are available at the U2FP video library. Check out Kate Willette’s Working 2 Walk Live Blog for additional information and discussions related to the videos.
Special thanks to Marilyn Smith and her incredible U2FP team for bringing W2W to Boston. Thanks also to NERSCIC team members Bethlyn Houlihan, Lynn Vergo, and Judi Zazula, who were instrumental to the success of the conference. To learn more about Unite 2 Fight Paralysis, please visit http://u2fp.org/.
NERSCIC Staff Changes
We’re pleased to welcome Sara Atkinson, Research Study Assistant, to the NERSCIC Team. Sara received her Master’s Degree in Public Administration from
We’d also like to give a special thank you to Vanessa Oliveira for the many ways she supported a wide variety of research projects through NERSCIC and the Health & Disability Research Institute. We wish her much success as she continues her education in the Physician’s Assistant Program at Long Island University in NY.
| NERSCIC Network Team Members Boston University School of Public Health, MA |
|
| Alan Jette, PT, PhD | Principal Investigation, Director |
| Bethlyn Houlihan, MSW, MPH | Associate Director |
| Judi Zazula, MS, OTR/L | Assoc. Director Dissemination & Knowledge Translation, Clinical Research Liaison |
| Mary Slavin, PT, PhD | Research Project Manager |
| Sara Atkinson, MPA | Research Assistant |
| Sarah Everhart Skeels, MPH | Senior Consultant |
| Hannah Mercier, MS, OTR/L | Collaborating Doctoral Student |
| Gaylord Specialty Healthcare, CT | |
| David Rosenblum, MD | Co- Principal Investigator |
| Diana Pernigotti, BS | Senior Research Coordinator |
| Hospital for Special Care, CT | |
| Seebramani Seetharama, MD | Co- Principal Investigator |
| Timothy Belliveau, PhD | Co-Investigator |
| Vishal Patel, BS | Research Assistant |
