Eunice Kennedy Shriver Center

Tag: Eunice Kennedy Shriver Center

27
Mar
2013

UMMS-Shriver LEND Program

Over the past several weeks, our blog introduced proud alumni of the LEND program; Leadership in Neurodevelopment & Related Disabilities. Through their personal stories, we were inspired by a collective ability to bring about change in organizations and communities.

This week we share further details of the LEND program itself, offered by the University of Massachusetts Medical School- Eunice Kennedy Shriver Center in Waltham, Ma. Maybe you or someone you know will be interested in this unique opportunity to improve the lives of children with disabilities and their families.

What’s involved?

LEND is an intensive 10 month program focusing on policy, legislation, leadership and management skills. It is designed for qualified graduate or post-graduate interdisciplinary clinicians, advocates, and family members.
The program challenges Fellows to rethink the ways in which healthcare, education, and social services are delivered, as well as the goals and quality of those services.

Program components include:

Applicant Qualifications

A graduate degree in a MCHB discipline or
Individuals without a graduate degree may participate in the program if they enroll in the MPA degree program offered in conjunction with Suffolk University.
Clinical/relevant experience with individuals with disabilities and their families
Leadership potential
Commitment to improving the status of people with disabilities and their families
Strong academic record
Ability to commit the time necessary to complete the program successfully

How to Apply

Application materials for Advanced Leadership Fellowship program can be downloaded here.

LEND Fellowship Application Form
Professional Reference Form

Please note that the application deadline for this year is May 1, 2013.

For further information, visit the website at UMass Medical School – Shriver LEND Program website or contact:

Carol Curtin, MSW, LEND Associate Director and Training Director Carol.Curtin@umassmed.edu , (781) 642-0246

Carol Imposimato, Administrator Coordinator Carol.Imposimato@umassmed.edu , (781) 642-0045

20
Mar
2013

LEND Program Makes Dream a Reality

categories: Autism, Voting & Government

Bill S.601: [We resolve] that a special commission is hereby established for the purpose of making an investigation and study relative to the need for accessible homes for… families that include persons with disabilities. (188th session)

Wow. How incredibly satisfying. Who would have thought I would have a bill before the MA Legislature? And all because of my LEND Fellowship.

Joining LEND

As a parent of a child with a disability, I came to LEND from a place of isolation and frankly, a great deal of anger. I was angry at all the obstacles I now faced with my son who uses a wheelchair.

Although the Americans with Disabilities Act (ADA) had increased access in the last twenty plus years, there was still a tremendous amount of work to do.

Finding Support From LEND Colleagues

LEND provided me with the tools I needed to address the frustrations I faced. As part of a diverse cohort of ten other like-minded individuals, I was able to break through an intense period of loneliness.

I wasn’t alone; there were other people who thought about these issues. There were parents and individuals with disabilities as well as professionals already working in the field.

As I watched my colleagues transform, I knew I was growing as well. It was safe to speak your mind in the group — but more importantly, we learned to listen. Really listen. And I learned to control my anger and focus that energy in a more productive direction.

Thinking About “Visitability”

My LEND capstone project focused on the housing market and the incredible shortage of accessible housing. While we could modify our own home to accommodate our son’s disability, as he grew, it had become more and more difficult to visit other people’s homes.

I discovered “visitability,” a simple concept that requires three features in new home construction: one door into a house without a step, a first floor bathroom, and 32″ wide doorways.

Wouldn’t it be wonderful if new homes were built this way? These three simple elements would allow our family to visit anyone!

My Capstone Project

My LEND capstone project was a plan to get this simple idea accepted as a new building standard. Part of the plan was to get a dialogue started between diverse groups who would benefit from access.

Bill S.601 is the beginning of that conversation, one that has taken on a life of its own. Now I read about groups voting to support the bill and representatives signing on. Such a simple idea; yet, what a profound difference this could make for the aging and disabled populations.

LEND helped me in accomplishing my goal…what about you? Join us next week to learn more about opportunities LEND can provide.

13
Mar
2013

LEND Provides Invaluable Opportunity

categories: Autism, Voting & Government

This week we are pleased to introduce guest blogger, Amy Weinstock, Director of the Autism Insurance Resource Center and 2005 LEND graduate.

Learning about LEND

I first learned about LEND when one of my daughter’s therapists told me she’d have to rearrange her schedule starting the next month, because she was about to start a LEND fellowship program. At the time, I was focused on getting help for my daughter, and didn’t pay much attention to anything else.

Two years later, another therapist told me she was applying to the LEND program. This led to two realizations on my part; the first being that I had really good therapists, and the second that LEND was a pretty big deal.

A good fit

At the time, I was working in corporate banking, and had become very interested in the topic of insurance coverage, or more accurately, lack of insurance coverage, for autism treatment. My knowledge of the health care system consisted of an insurance card, a sick child, and no coverage for her treatment.

I went to the LEND website, and quickly realized that the training at LEND was exactly what I needed. My goal was to begin working on the systemic change I believed was necessary in order for families to obtain insurance coverage for autism treatment.

Although I didn’t have all of the direct pre-requisites, I applied and was invited for an interview. I left that interview more convinced than ever that LEND would be critical to my goal of merging my professional experience in the corporate world, with my personal passion to work in the disability field.

LEND education supports change

My LEND Capstone project, “Expanding Insurance Coverage for Applied Behavioral Analysis (ABA) Treatment for Children with Autism” became the blueprint for my work over the next five years. It culminated with unanimous passage by the Massachusetts House and Senate of one of the country’s most comprehensive autism insurance bills.

The education I received at the LEND program, and the introductions to many of the leaders in the disability service and advocacy fields, was invaluable, and is a major reason people in Massachusetts affected by autism have this coverage today.

Join us next week to hear from another LEND fellow and how the program impacted their life.

06
Mar
2013

LEND Program Offers Exciting Opportunity for All

categories: Autism, Voting & Government

When I think back to turning 50, I was pretty comfortable with my life. My professional career had been fulfilling, and my two sons had finished college and were off following their own dreams. Consulting part time was an option, but I really wasn’t looking for too much in terms of a professional challenge.

No, I was ready to relax a little.

LEND opens a door

Until one day, I was speaking to a friend who told me about the LEND program; Leadership Education in Neurodevelopmental and Related Disabilities. She described it as a wonderful opportunity to attend a graduate level training program with others committed to leadership in the field.

So I decided to check it out.

What I realized is even though I had started my own nonprofit, I learned through trial and error only. Going back to school would offer a whole new dimension of learning.

Getting accepted

After doing some more research, I came to the realization that the program sounded wonderful and I really wanted to be accepted.

The good news was even though my undergraduate grades were not impressive, (college in the 70s,what can I say?), perhaps they thought I could bring credible work experience to the group, and I was accepted into the program.

I was in and I was nervous.

The impact on my life

Over the next two years I was the class nerd. I relished my time in the classroom, enjoying the opportunity to research and write on topics of interest and eventually completing my masters at Suffolk University. It was truly a life changing experience.

I guess in many ways it was what I expected in terms of the academic challenges, yet what I hadn’t envisioned was the intimacy in friendships that would be made both with my professors and colleagues. We learned so much from each other and I will be forever grateful for the impact they made on my life.

Today, I am honored to teach in the LEND program, which is an opportunity I never imagined. I only hope that I will have the same positive impact on my students in the years to come.

This month, join us to hear from other alumni and students in LEND as they share their own experiences. Who knows. With applications now being accepted, you may find yourself in one of our classrooms this fall.

12
Sep
2012

Shriver Center Supports Emergency Preparedness for People with Disabilities

categories: Emergency Preparedness

Our month-long blog on emergency preparedness continues this week with an interview of Dave Stowe. After more than 10 years as a firefighter/EMT, Dave now specializes in Emergency Management and recently completed a Master’s Degree in the field.

Read on to discover more about Dave’s thoughts on emergency preparedness for individuals with disabilities.

Q: What is your role at the Shriver Center?

A: I serve as a consulting emergency management specialist to the Shriver Center. While working on my Master’s Degree, I was immediately impressed with the Shriver Center’s efforts to help people with disabilities prepare for and respond to emergencies and disasters. Bringing awareness of the unique challenges faced by people with disabilities is important, especially to emergency responders and government officials. I knew immediately that I wanted to be part of this amazing program.

Q: How can individuals with disabilities assist responders in creating a positive and safe outcome during emergencies?

A: I believe it works best if people with disabilities and responders have met before. That way, their first meeting is calm and relaxed, not in all the noise and confusion an emergency can cause.
These meetings can take place in a variety of ways. For example, fire departments may have events open to the community at their station. Also, some towns hold community-wide readiness events (“How to Prepare for Hurricanes” for example) that fire, police, and emergency medical officers must attend. Some towns offer registries that allow disability-related information to be shared with 911 (but kept private) ahead of a disaster to make response easier.
These are all possibilities.

Also, be as specific as you can with responders about your disability. What is it called? What do you need help with? What can you do by yourself? Do you need to bring equipment with you? Even people with the same disability have different needs, so this information is very important.

Q: How has working with the Shriver Center affected your approach to thinking about emergency preparedness and response for individuals with disabilities?

A: My previous job offered no real training on interacting with individuals with disabilities; we basically learned on our own. Working with the Shriver Center has broadened my perspective and understanding of why inclusive emergency planning, preparedness and response are so important. They make individual communities more resilient when emergencies occur, and highlight the individual strengths of someone with a disability, rather than focusing solely on limitations.

Whether it’s directing people how to escape from a building, organizing support for an emergency planning meeting, or volunteering in a mock emergency drill, everyone can help their town prepare for and respond to emergencies.

22
Feb
2012

Expression and Attention in Shriver Center Autism Research Studies

categories: Research

Over the past month in our 4-part series “Getting Involved in Shriver Center Research,” a common theme has emerged — the notion of “giving back.” For Joyce, the mother of a 16-year-old daughter with Asperger Syndrome (AS), giving back influenced her decision to enroll her daughter in “Express Yourself” (EY) and “Look Who’s Talking” (LWT), two studies on expression and attention in teens with AS and high functioning autism (HFA). In addition, the “Detection Study” and “Focus of Attention” are two more great studies that explore attention and autism in children and teens.

For parents, giving back matters

Although Joyce grew up in New York, her daughter’s early life in Asia produced a very late diagnosis. “I am grateful to live in the U.S. where research is much bigger than in other countries,” she explained. “Studying AS and HFA, particularly in girls, motivated us to take the 40-minute drive.”

For teens, receiving a stipend matters

When Joyce found the EY study online, she “made a deal” with her daughter by appealing to her desire to be compensated, since as a teen, “she ‘didn’t mind’ the pocket money.” The study maps facial expression in teens with AS and HFA by using the same motion capture technology (“MoCap”) used in movie animation (view demo video). EY explores whether facial expression in these teens is different and possibly stigmatizing. The tiny reflective stickers used to map facial movement “didn’t bother” her daughter at all, according to Joyce.

For the IRB, safety matters

Joyce stressed her comfort knowing that these studies were safe based on the rigorous review from UMass Medical School’s Institutional Review Board (the “IRB”), which requires stringent human studies protections. “She was in control. She could ‘assent’ to being in the study or could withdraw at any time,” Joyce explained. “Knowing this should put parents’ minds at ease.”

Joyce’s message to parents: “Doing it now!”matters

When asked what else parents should know, Joyce simply said, “Do something now.” “We don’t think about what our forerunners have done so our kids can benefit,” she continued. “The more data there is, the better we can understand autism.”

A final thought

I have enjoyed sharing my and other parents’ perspectives answering the prevailing question about getting involved in research, namely, “What’s in it for us?”. By getting involved in research, we can help move the science forward to help children like ours progress and benefit in the future. Thanks for reading!

For more information about Shriver Center studies looking for participants, please visit https://www.umassmed.edu/shriver/recruit.aspx.

About the author

Elaine Gabovitch is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.

15
Feb
2012

Cracking the Code on Early Learning and Developmental Disabilities

categories: Research

Last week, families who participated in Shriver Center health promotion studies noted good health, making friends and advising research as some of the benefits. This week, we’ll focus on the Foundations of Learning study, a series of five studies that develop or improve educational procedures for children and teens with autism spectrum disorders, intellectual disabilities or Down Syndrome.

I recently spoke with Steve Trudeau, the father of five including Jacob, now age 16, and Ethan, age 13, who reflected on getting involved in Shriver Center research. Jacob has Down Syndrome and Ethan is typically developing; both participated in the Foundations study.

Paying it forward

When it comes to understanding the needs of people with Down Syndrome (DS), Steve had always wanted to give back noting the “long line of families” who had gone before his. He hadn’t been aware of any DS studies prior to Foundations.

“It seemed like a great way for researchers to learn more about it. It was a scientific way to help kids like Jacob in the future, and that’s what we’re all about.” He mentioned that forty years ago people knew very little about the disability, but recent studies have helped to improve misperceptions to the benefit of children with DS and their families.

It’s easy to do

Steve described a typical study session. “It was a two-year study and we came about every other month. The session only took one hour – not six, as you might think.” By working with their Shriver Center research assistant (also named Steve), the Trudeaus were able to fit the time into their schedule.

“Steve bent over backwards for us – he was fantastic. We didn’t have to scramble. It was an easy ‘in and out’.”
Moreover, the kids looked forward to it. “It was fun for them to match faces and shapes on the computer; it was a game for them.”

Seeing the Shriver Center from the inside

While the boys played computer games, Steve would walk around the Shriver Center looking at the research posters and other information hanging on the walls. “I didn’t know about all the work being done at the Shriver Center before…it warmed my heart.”

Anticipating the findings

Lastly, Steve commented on looking forward to the study findings knowing his family contributed to the outcomes. “I can’t wait to see the results. If we have helped children in the future by participating now, it was well worth it.”

We’ll complete our four-part series on the benefits of getting involved in Shriver Center research next week when we’ll look at our studies dedicated to attention, expression and autism. Hope you’ll join me then!

About the author

Elaine is the Director of Family & Community Partnerships at the E.K. Shriver Center and an instructor in the Department of Family Medicine & Community Health of UMass Medical School and Family Faculty for the Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the Shriver Center.

01
Feb
2012

Getting Involved in Shriver Center Research: What’s In It for Me?

categories: Research

This month we are pleased to welcome our guest blogger, Elaine Gabovitch, who will share her personal experience as a parent participating in research at the Shriver Center.

The First Time

I remember the first time I signed up my then-10-year-old son for a research study. Combing through local disability listservs to find tips and resources to help him, I came upon a study posting from the Shriver Center about eating and obesity in children with Autism Spectrum Disorders (ASDs). Something about it caught my eye and caused me to call and find out more. What was it about this particular posting that made me act?

The Timing

Maybe it was because my son was 10 and the timing seemed right. At this age, we had gotten through the earliest, most urgent days of learning about and responding to his disability. We had some things in place that were starting to work. It seemed that we may finally have the time.

The Topic

Maybe it was because the study was eating habits, something that resonated for us. We had struggled through my son eating little more than chicken nuggets and pizza for many years, suffering through gag reflexes from the smells of certain foods. I worried about how to help him eat better. Answering questions might give me a way to make sense of it all, or at least help research learn enough to help kids like mine in the future.

Giving Back

Maybe it was because I wanted to give back to “the village” of people who had helped us. The researchers at the Shriver Center were not the same professionals who assisted our family in the early days, but there was something about helping them understand this thorny problem that felt right.
Whatever the reason was, something tipped my decision scale and we signed up. And it was interesting, fun, and most importantly, easy to do. But the timing had to be right, and we all had to be ready. Once we were, it was a wonderful experience that I encourage families to try.

Years later, I now work at the Shriver Center and think about research a lot. I see many families getting involved in research as I once did. It is gratifying to see them helping to expand Shriver’s knowledge base through taking part in our studies.

There are many reasons to get involved in Shriver Center research that answer the question, “What’s in it for me?” We’ll start to answer that question next week by looking at the Shriver Center’s health promotion studies, such as the one we participated in all those years ago.