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Institute on Disability / UCED

2016 Annual Report
Image Caption: Members of the 2017 NH Senior Leadership Series speak with each other and CACL staff member Jennifer Rabalais during their Graduation session.

July 1, 2015 – June 30, 2016

2016 IOD ANNUAL REPORT

The Institute on Disability/UCED (IOD) was established in 1987 to provide a university-based focus for the improvement of knowledge, policies, practices related to the lives of people with disabilities and their families and is New Hampshire's University Center for Excellence in Disability (UCED). Located within the University of New Hampshire, the IOD is a federally designated center authorized by the Developmental Disabilities Act. Through innovative and interdisciplinary research, academic, service, and dissemination initiatives, the IOD builds local, state, and national capacities to respond to the needs of individuals with disabilities and their families.

From the Director

Dear Friends and Colleagues,

Charles Drum I am happy to present to you the Fiscal Year 2016 Annual Report for the Institute on Disability (IOD) at the University of New Hampshire. In addition to informative data and metrics on many important aspects of our work, this report includes a selection of profiles which help illustrate the IOD’s impact this past year.

The development and dissemination of new knowledge is critical, but it is people and their development and wellness that drive positive change. We are fortunate to be part of a vast, diverse, and prolific network of change agents, which includes research faculty, operating staff, students, advocates, policymaker and service providers, who strive each and every day to ensure all people, including individuals living with disabilities, are fully engaged members of communities. Their noble efforts remind me that we must not rest on what we think we know or simply on past practices, but that we must continually focus on gaining and applying new knowledge to ensure progress in our society for individuals with disabilities and their families.

Thank you for taking the time to review this report. I welcome any comments and feedback you have about the work of the IOD and appreciate your ongoing support and partnership.

Sincerely,

Charles Drum Signature

Charles Drum, MPA, JD, Ph.D.
Director, Institute on Disability, University of New Hampshire
Professor of Health Management and Policy

Downloads

The 2016 IOD Annual Report contains data from the FY 2016 Report on Scholarly Activity and Engagement. For additional information about the Institue on Disability,
please visit the IOD website.

Research & Publications

Peer-Reviewed Articles

14

Peer-Reviewed Articles

1

Books and Book Chapters

4

Training Curricula

33

Other Dissemination Materials

Teaching

UNH Courses

18 UNH Courses

Guest Lectures

19* Guest Lectures

Number of Students

278 Number of Students

*Represents an all-time high

Dissemination

Peer-Reviewed and Invited Presentations

International

9 International

National

133 National

State and Local

73State and Local

Outreach & Engagement

26,156 Email Subscribers
215* Mass Emails

783 Bookstore Orders
96.2% Bookstore Satisfaction Rate

34 Press Releases
15 Mentions in the Media

75,078* Website Visits
57,066* Website Visitors
3,236 Website Downloads

Social Media

Twitter Followers & Tweets

2,223* Twitter Followers
1,055* Tweets

2,886* Facebook Followers
812* Posts

37 IOD Blog Posts
693 Visits

YouTube Views

61* YouTube Videos
11,019 Views
28,807 Min. Watched

  • *Represents an all-time high
  • Represents first year of activity

Profiles

Déodonné Bhattarai
Déodonné Bhattarai
Genetic Education Materials
for School Success

Building a Foundation for School Success

Déodonné Bhattarai spends most of her days with her two-and-a-half-year-old son, Bodhi. He’s bilingual, speaks English and Nepali, loves to play with his friends, goes ice skating, and can maneuver his wheelchair almost entirely independently. A year and a half ago, he was diagnosed with Spinal Muscular Atrophy (SMA). Déodonné made the choice to leave her job as a Health Policy Analyst to better manage his care.

A few months after his diagnosis, the IOD’s Mary Schuh and Ann Dillon reached out to Déodonné to set up a meeting. They discussed her needs, and Déodonné joined the NH Leadership Series. While in the series, she joined the New England Genetics Collaborative (NEGC) Genetic Education Materials for School Success (GEMSS) action group. She and six other Series participants did a full review of the existing website, added new content including information about SMA, and worked on dissemination strategies. They presented their findings at the NEGC’s Annual Meeting.

Bodhi hasn’t entered school yet, but the GEMSS site has helped Déodonné prepare. When he begins, a user-friendly website will serve as a resource for his education team. It will provide information about medical equipment, accommodations, and best practices, to ensuring that Bodhi and other students will be fully included in their classrooms. It will share individual stories of students with specific genetic conditions who are happy and thriving. The features on the GEMSS site,

help to change the perception of what expectations you can have for a child with a genetic condition,” shares Déodonné. “They set the expectations high while providing the tools to help achieve them.

Déodonné currently serves as a member of the IOD’s Consumer Advisory Council and is the Policy Co-Chair of the NH Council on Developmental Disabilities. She also volunteers at the Disability Rights Center in Concord, NH. "The IOD gave me a lifeline when I needed one, and my continued involvement with the IOD is a way to give back,” explains Déodonné.

To learn more about Genetics Education Materials for School Success, visit www.gemssforschools.org

Jonathon Drake
Jonathon Drake
Project Director

Empowering Youth to Reach Their Full Potential

Jonathon Drake first started working at the IOD as an Undergraduate work-study student more than 15 years ago. He stayed connected to the IOD while he got his Masters in Social Work at UNH. He is also a graduate of the IOD’s LEND Program.

Jonathon was introduced to person-centered planning while in the LEND Program, and the rest, as they say, is history. After graduation, Jonathon began working on what is now the RENEW project. RENEW works with schools to support youth with emotional and behavioral challenges. Jonathan provides support to youth and their RENEW coaches.

As a central figure with the RENEW project, Jonathon works to transform the lives of youth across New Hampshire. He provides coaching and technical assistance to high schools implementing RENEW, including ConVal High School in Peterborough, NH.

He’s also working to translate New Hampshire’s RENEW work and activity to a national audience. One of the key trainers for the RENEW project, he provides support to the US. Department of Education-funded evaluation of the RENEW project — developing fidelity measures and monitoring adherence to them. RENEW currently operates in 12 states and Denmark. 

When youth take advantage of their resources, surroundings, and apply it to their life wants, needs and goals, they are often able to make tremendous strides,” shares Jonathon Drake. “Experiencing this process with them is unique, invigorating, and inspiring to me.

In the coming years, Jonathon will continue to bring his work with youth to a state and national audience as well as finish his Education Specialist Degree in Educational Administration and Supervision from the University of New Hampshire.

To learn more about RENEW, visit www.renew.unh.edu

Mark Joyce
Mark Joyce
Assistive Technology in NH

Simple Solutions to Living Life Everyday

Mark Joyce is retired from the Air National Guard and the federal government. He has lived with an "essential tremor” for a long time, but in the past few years, the tremor worsened, to the point where he’s begun having difficulties with daily activities like eating, brushing his teeth, making phone calls, and typing on his phone. After hearing a presentation by staff at Assistive Technology in New Hampshire (ATinNH), a friend suggested that Mark give the program a call. Mark reached out to Stacy Driscoll and made an appointment to discuss his needs and test out potential assistive technology solutions.

Over the course of three visits, Stacy and Dr. Therese Willkomm tested out dozens of potential adaptations and solutions to make Mark’s life easier. One of the technologies is showing him ways to use features of his iPhone that make communication quick and easy.

When I pick up my phone, and I have to text someone, it is a long, arduous process for me,” shares Mark. After getting set up and trained with voice-to-text technology, things got easier. “To be able to pick it up and talk in it. My anxiety is a lot less. I know I’ll be successful in getting my message sent.

Stacy and Therese also manufactured a number of solutions for Mark including a lap board for resting his work and a moldable plastic grip to adapt his stylus.

"One of the best things about Stacy and Therese is that they have no boundaries in terms of what they’re willing to do and try in a given situation,” shares Mark. "I never hear them say, ‘oh no, we can’t do that.’ They’d try anything until they found a solution that worked for me.”

To learn more about the Assistive Technology in New Hampshire project, visit www.atinnh.org

Jennifer Rabalais
Jennifer Rabalais
Project Director

Building a Statewide Advocacy Network

Jennifer Rabalais has been working since 2010 as an IOD Project Director to increase the capacity of NH’s communities and organizations meeting the needs of older adults and individuals with disabilities in community-based settings. Working primarily with the Center on Aging & Community Living (CACL), her work has focused on projects that strengthen the pool of quality direct care workers, balance the use of long-term services and supports between institutions and communities, and advance healthy aging in NH. Jennifer also provides support and training in advocacy and leadership skills to advance issues of importance for New Hampshire citizens as they age.

One of her major priorities this past year was the NH Alliance for Healthy Aging, a statewide coalition of cross-sector stakeholders focused on the health and well-being of elders in New Hampshire. Her vision is to create communities in New Hampshire that advance culture, policies, and services supporting older adults and their families. One of the established priorities of the group is building an advocacy infrastructure to support aging issues in NH. The group is currently convening advocates from across the state and working towards establishing long-term policy priorities for aging in NH.

The aging population is the fastest growing population in NH right now,” explains Jennifer. “It is imperative that we not only plan thoughtfully to prepare for the needs of this growing population but also consider how to best utilize the unique resources and skills of this population.

In the coming year, Jennifer will be participating in the Leadership Learning Exchange for Equity, a program for leaders across the state to reflect, learn, and act to address racial bias. Jennifer looks forward to sharing the lessons learned from this training, as well as the many experiences from her work, with a broader regional audience.

To learn more about the Center for Aging & Community Living, visit www.agingandcommunityliving.org

Service

Community Service Activities

Local, State, and National Committees and Boards 87*
Memberships in Professional Associations 56*
Editorial and Review Activities 28*
University Committees and Commissions 25*
Granting Agency Review Activities 6*

*Represents an all-time high

Technical Assistance

Hours Provided

9,477

Hours Provided
Individuals Served

1,520

Individuals Served

Public Events

IOD Trainings, Workshops, Webinars, Conferences

35

IOD Trainings, Workshops, Webinars & Conferences
Participants

3,229

Participants
Average Satisfaction Rating

3.52*

Average Satisfaction Rating
(Scale from 0-4)

*Represents an all-time high

2016 Highlights

  1. July 2015

    Luke Kalb Luke Kalb, a Ph.D. student from Johns Hopkins University’s Bloomberg School of Public Health, received the National Institute of Health’s Ruth L. Kirschstein National Research Service Award Individual Predoctoral Fellowship to measure the impact of Center for START Services’ crisis prevention and intervention services on the lives of people with intellectual and developmental disabilities and behavioral health needs.

  2. August 2015

    Camp CreATe The IOD hosts Camp CreATe & the Conference on School Culture, Climate, and Positive Behavior Support attracting 296 individuals from around the world.

  3. September 2015

    Dr. Debra Brucker Dr. Debra Brucker receives a three-year, $100,000 cooperative agreement from the USDA’s Economic Research Service to look at how food security might influence economic and health outcomes for persons with disabilities.


    New England Genetics Collaborative The New England Genetics Collaborative begins a first-of-its-kind partnership with the Genetic Metabolic Center for Education to create a telehealth platform able to support the diagnosis and treatment of inherited metabolic disorders throughout New England.

  4. October 2015

    Dr. JoAnne Malloy Dr. JoAnne Malloy gives keynote "Linking School Behavioral Health Within a Multi-tiered System of Support” at Bradley F. Kidder Educational Law Conference in Concord, NH.


    NIDILRR IOD receives 5-year, $4.3 million grant from NIDILRR for the Employment Policy & Measurement Rehabilitation Research & Training Center to improve knowledge about and access to existing disability data, and generating the knowledge needed to improve future disability data collection and dissemination.

  5. November 2015

    Disability Rights are Civil Rights The IOD celebrates the 25th Anniversary of the ADA at UNH with the on-campus Equality & Access Fair as well as Spencer West speaking as a part of the Krumm Lecture Series.

  6. December 2015

    Dr. Karla Armenti Dr. Karla Armenti and the New Hampshire Occupational Health Surveillance Program join the IOD from the NH Division of Public Health Services. Funded by the CDC, the project provides meaningful statistics to identify priority occupational safety and health issues in the state.

  7. January 2016

    Kathy Bates The IOD launches From Where I Sit, a new blog written by Kathy Bates providing a first-person voice on various trending disability-related topics.

  8. February 2016

    UNH College of Health & Human Services Research Conference More than a dozen IOD staff members braved an unexpected snowstorm to present their recent projects and findings at the biennial UNH College of Health & Human Services Research Conference.

  9. March 2016

    Tobey Partch-Davies Tobey Partch-Davies named Co-Chair of the UNH President’s Commission on the Status of People with Disabilities.


    nTIDE Lunch & Learn Webinar The monthly nTIDE Lunch & Learn Webinar Series launches to discuss the latest national news and statistics in disability employment.

  10. April 2016

    Dr. Sue Fox Dr. Sue Fox, IOD Associate Director, receives commendation from NH Governor Maggie Hassan for her leadership as co-director of the UNH Center on Aging and Community Living and as a founding member of the Governor’s Commission on Medicaid Care Management.


    NH LEND NH LEND trainees from NH and Maine traveled to Washington, DC, to participate in the Disability Policy Seminar where they received intensive advocacy training and met with their elected officials and staff on Capitol Hill to advocate for the Reauthorization of the Lifespan Respite Care Reauthorization Act.

  11. May 2016

    NH Children’s Behavioral Health Workforce Development Network The NH Children’s Behavioral Health Workforce Development Network issues a report, Improving Child & Community Health: Addressing Workforce Challenges in Our Community Mental Health Centers, which examines the characteristics of the children’s mental health workforce, the impact of staff turnover, and the perspectives of the workforce on successful strategies.

  12. June 2016

    NH Disability and Public Health Project Logo The NH Disability & Public Health Project releases its 2016 report on social determinants of health, access to health care, and health indicators.


    Dr. Betsy Humphries Dr. Betsy Humphreys co-presents a session on "Identifying Leadership frameworks for Early Intervention" at the International Society on Early Intervention Conference in Stockholm, Sweden.

Financials, Grants, & Contracts

$11,066,825*
Total Budget

102*
Total Number of Grants & Contracts

*Represents an all-time high

Faculty, Staff, & Leadership

Faculty
(15)

Staff
(85)

*Represents an all-time high

Management Team

Charles E. DrumCharles E. Drum
Director & Professor

Susan FoxSusan Fox
Associate Director

Jennifer DonahueJennifer Donahue
Finance Manager

Matthew GianinoMatthew Gianino
Director of Communications

Andrew HoutenvilleAndrew Houtenville
Director of Research

Mary SchuhMary Schuh
Director of Development & 
Consumer Affairs

Executive Committee

Charles Drum
Director & Professor

Susan Fox
Associate Director

Michael Ferrara
Dean, College of Health & Human Services, University of New Hampshire

Amy Messer
Executive Director, Disability Rights Center

Clyde Terry
Chief Executive Officer, Disability Rights Center

Lorene Reagan
Bureau Chief, New Hampshire Dept of Health & Human Services, Bureau of Developmental Services

Santina Thibedeau
State Director of Special Education, Bureau of Special Education

John Richards
Interim Director, New Hampshire Council on Developmental Disabilities

Consumer Advisory Council & Office Locations

Consumer Advisory Council (CAC)

  • Steve Alexander
  • Deodonne Bhattarai
  • Lisa D. Beaudoin
  • Jennifer Bertrand
  • Ellen Boudreau
  • Gina Colantuoni
  • Jeff Dickinson
  • Jackie Driscoll
  • Penny Duffy
  • Bonnie Dunham
  • Nathan Gams
  • Amy Girard
  • Sandy Hicks
  • Richard Johnson
  • Cabrinni Kulish
  • Chrissy Shaffer
  • Jim Tobin
  • Linda Wadensten
  • Kathryn Wallenstein

Office Locations

Durham Office
10 West Edge Drive, Suite 101
Durham, NH 03824
Voice: 603.862.4320 | Relay: 711
Fax: 603.862.0555
contact.iod@unh.edu

Pettee Hall Office
55 College Road, Room 103
Durham, NH 03824
Voice: 603.862.0561 | Relay: 711
Fax: 603.862.0034

Concord Office
56 Old Suncook Road, Suite 2
Concord, NH 03301
Voice: 603.228.2084 | Relay: 711
Fax: 603.862.3270

The IOD Bookstore
10 West Edge Drive, Suite 101
Durham, NH 03824
Voice: 603.862.4320 | Relay: 711
Toll Free: 800.378.0386
Fax: 603.862.0555
contact@iodbookstore.org
www.iodbookstore.org

Professional Development Center
56 Old Suncook Road
Concord, NH 03301
Voice: 603.228.2084 | Relay: 711
Fax: 603.228.3270
events.iod@unh.edu

Thank you!

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