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Institute on Disability / UCED

2019 Annual Report
Image Caption: NH Leadership Series Coordinator, Deb Genthner, at IOD annual meeting.

July 1, 2018 – June 30, 2019

2019 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,

Kelly Nye-Lengerman Over the last year, the IOD has remained steadfast in its mission to promote full access, equal opportunities, and participation for all persons by strengthening communities and advancing policy and systems change, promising practices, education, and research. We at the IOD, along with our community, have experienced both subtle and dramatic changes in how we approach our mission. Changes due to COVID-19, social distancing, online learning, community unrest, and civil rights injustices have demanded that we find new and more inclusive ways of approaching our work and commitment to service, research, and training. Now more than ever, the IOD’s values call on us to be responsive, flexible, and open to the new challenges and asks of our work. The disability community is no stranger to the face of injustice, and we have worked for more than a generation on increasing participation, inclusion, and belonging of all people. We are committed to the hard work of listening, caring, respecting, engaging, and healing with our community.

The IOD has remained strong and nimble under the leadership of Andrew Houtenville and Linda Bimbo, who served as Acting Director over the last three years. Their leadership allowed the IOD to focus on things it values most--choice, self-directed supports, community inclusion, and cultural and linguistically competence across the life span. Both Andrew and Linda used their extensive experience within the IOD to support the organization through a time of transition. On the other side of that transition, as the new Director, I am committed to leading the IOD into its next season of growth, innovation, and service. I am inspired and motivated by the work I have witnessed at the IOD. In the coming years, I look forward to meeting and learning from individuals, families, partners, and collaborators across the state.

We will be most successful in the future when we partner with our community as we rise to meet the opportunities and challenges that lie ahead. In the year ahead, the IOD will remain a strong voice, partner, ally, and leader as we work to advance the inclusion and belonging of individuals living with disability and their families. Thank you for your partnership. We welcome more opportunities for learning and growing with you.

Sincerely,

Kelly Nye-Lengerman Signature

Kelly Nye-Lengerman, Ph.D.
Director Institute on Disability, University of New Hampshire

IOD’S AREAS OF EMPHASIS (AoE)

The IOD aligns its projects and strategic initiatives with current and emerging national, regional, and state priorities related to individuals with disabilities. A majority of the institute’s grants and programs are concentrated within four strategic Areas of Emphasis (AoE): Community Living & Employment; Health & Genetics; Assistive Technology; Inclusive Early Care and Education. By design, this report paints a comprehensive picture of each AoE and the tangible impact the projects and grants have had on individuals with disabilities.

Percentage of Projects & Grants by Areas of Emphasis

Coming Soon!

The IOD announced Behavioral Health & Wellness will be added as a fifth area of emphasis in FY20. The initiative will expand the institutes’s strong collection of resources, expertise, and services dedicated to supporting individual, social, and emotional wellness in schools and communities. To learn more about the IOD’s new Area of Emphasis please visit the IOD website (opens new window).

Downloads

The 2019 IOD Annual Report contains data from the FY 2019 Report on Scholarly Activity and Engagement. For additional information about the Institute on Disability, please visit the IOD website (opens new window).

Community Impact Profiles

Stacy Champey
Stacy Champey

Improving Outcomes for Children

As a behavior specialist, Stacy Champey consults on special education cases involving students with emotional and behavioral challenges (EBC). With the right supports, Stacy believes any student can succeed in school. Yet many schools lack proper personnel or supports that children and youth with significant needs, including those with EBC, developmental and intellectual disabilities, autism, sensory, and other learning disabilities, to be successful. Even with the right resources, change in no way comes easily, especially in large districts like Manchester, New Hampshire.

“It’s hard to bring change in a big district,” says Stacy. “You just kind of chug along, year to year to year to year… doing things the same way.” Through her position with the school district, she was connected with Dr. JoAnne Malloy, a Research Associate Professor at the Institute on Disability at the University of New Hampshire, who encouraged her to apply for her Trauma Informed Policy and Practice graduate program (TIPP). “It sounded like it was a natural fit for me and really dovetailed the work that I’m currently doing at Manchester as a behavior specialist… So I applied for the program.”

The TIPP program helped me to look closer at special education.

TIPP prepares graduate social work and special education scholars in research-based practices and systems change strategies to improve outcomes for children and youth with significant support needs. The program, co-taught by Dr. JoAnne Malloy and Dr. Mary Schuh, is unique as it brings together special educators and social workers to learn about the adverse impacts of trauma and building resiliency and inclusion at the individual, family, school, and community levels. 

“The TIPP program helped me to look closer at special education and some of the practices that we have in our district.” Stacy believes the program challenged her thinking and philosophical approach to education. “It was a great experience to connect with other special educators and social workers in this course. We realized we have a common vision and a common mission.”

For those considering the program, Stacy advises keeping an open mind, “Some people are going to go in and think this course is about a solution or strategies for working with students that have experienced trauma. This is definitely built into the course, but it is so much more than that.”

Learn more about the IOD's Inclusive Early Care and Education work (opens new window)

Nate Loomis
Nate Loomis

Low-Cost, High-Value

Nate Loomis was 18 when a bodysurfing injury paralyzed him from the chest down and impaired his fine motor skills in his hands and arms. As a freshman at UNH, he dreamed of going to the Rhode Island School of Design, “I actually found out that I got accepted while I was in rehab,” says Nate. “When you’re working on an artwork, it’s like, it’s like a part of your heart and soul goes into it. So when it’s not coming out the way you want, it can be frustrating and emotional.”

By coincidence, years later Nate took a job in the same building as UNH’s OT department, where Dr. Therese Willkomm works. Dr. Willkomm is the Director of ATinNH and is well known as “The MacGyver of Assistive Technology,” because of her low-cost high-value rehabilitation technology solutions. Out of curiosity, Nate dropped by her office when the tip of his typing stick fell off, “They went into their closet, sort of like a craft closet, where they have every little doohickey in the world…and in about 30 seconds I was on my way back to work.”

A lot of times we look at the adaptive equipment as utilitarian. Whether it’s kitchen utensils or electronics, or costly equipment, like screen readers, or prosthetics, “Oftentimes these things are so expensive and later you come to find out they’re not made very well…So this perspective of being able to like source everyday materials and inexpensive materials or recycled materials like to me, is one of the coolest things.

They gave me this huge part of my life back.

It didn’t take long for Nate to return to ATinNH, this time with a personal request—to help him create art again. “They tackled my desire to create art as intently as they would any other problem and, with a ton of enthusiasm and encouragement.” Through the AT4ALL equipment database, Dr. Willkomm outfitted Nate with an iPad Pro and Apple Pencil, “I just started sketching and it felt like I had a lot of my old ability back,” shares Nate. “It was a really emotional experience. It was like they gave me this huge part of my life back.”

“People really need to know that this is there for them in the community,” says Nate. “They have a true passion for their field and it just comes across every time I interact with them.”

Currently, Nate works at Northeast Passage as Annual Fund & Donor Communication Coordinator where he manages development and marketing communications. He continues to stay in touch with ATinNH and helps test student-designed prototypes.

Learn more about the IOD’s Assistive Technology work (opens new window) and how to make you’re own ATinNH marker grip

Eric Lauer
Kathy Bates
facilitating a NH Leadership group discussion.

I Don’t Need to be Fixed

The first thing they do at Leadership is give you a microphone and ask you to share your hopes, fears, and gifts.” Kathy has Cerebral Palsy, which can affect the clarity of her speech and mobility. She remembers watching anxiously as the mic made its way around the room. “I was worried about what I was going to say and if I was going to drop the mic,” says Kathy, “and at that time, ‘dropping the mic’ wasn’t a thing.”

Weeks later, Kathy attended a Leadership class led by disability activist Norman Kunc, who also has Cerebral Palsy. “He said it was ok to be disabled, and I didn’t need to be fixed because disability is part of every culture and every segment of society. It might sound ridiculous, but at that moment, it felt as if a big weight was lifted off my shoulders… It was the most important life lesson I could have ever learned.” The class helped her realize that life is full of possibilities, and she deserved to live life to the fullest, just like anyone else. “After that first year, I was like, give me a microphone!”

Since graduating in 1998, Kathy has become a prominent advocate for people with disabilities in the areas of employment, self-directed care, education, and rights. She has been a featured speaker at numerous conferences and workshops around New England.

A good life is a life of our choosing, and we have more choice if we are involved.

“A good life is a life of our choosing, and we have more choice if we are involved,” says Kathy. “I still don’t know if people absolutely listen, but communication is my thing, and I have a right to live a good life.” 

This summer, Kathy retired from the New Hampshire Leadership Series after serving over 20 years as a group leader and mentor. She will continue to advocate for disability rights through her work at the IOD, writing, volunteerism, and business, Wings and Wheels Consulting Services.

Learn more about the IOD’s Community Living & Employment work (opens new window)

Tara Hayes
Tara Hayes
shares pictures of her children, at the annual caregivers conference.

A Common Goal

Even though treatment options and genetic resources have gotten better in recent years, the pool of genetic care specialists is small. “There’s not a lot of genetic providers, especially in Rhode Island, and especially for children,” says Tara Hayes. “NERGN is trying to make sure that anybody who needs access to services and support can get it.”

Tara has been an active and engaged member of the health and genetics community for 12 years. A Family Voices Manager at the Rhode Island Parent Information Network (RIPEN) and mother of a child with a rare health disorder, Tara’s uniquely qualified to serve on the New England Regional Health Network’s (NERGN) Advisory Committee. NERGN aims to improve the quality of coordinated and comprehensive genetic services for children and their families in New England. As a member of NERGN’s Advisory Committee, Tara helps identify gaps and opportunities to better support Rhode Island families. 

“There are so many different diagnoses and conditions and things that families find out along the way of their life journey that can be really tough.”

They’re in it for the family, they’re in it for their patients, and not for personal gain.

Some genetic conditions only affect a small number of people, and a diagnosis doesn’t guarantee there’s a definitive treatment. Finding trusted resources and specialists while managing a child’s health can become a full-time job. Tara believes NERGN’s collaborative approach has been instrumental in improving family-centered care in her state. “We’re all working together around a common goal,” says Tara. “They’re in it for the family, they’re in it for their patient, and not personal gain.”

In 2018, Tara Hayes was nominated for caregiver of the year for her work with RIPIN and her role in caring for her own son, Andrew, who was born with a rare congenital neuromuscular disorder that medical experts thought would take his life within days of being born. Andrew is now 12 years old and thriving.

Learn more about the IOD's Health & Genetics work (opens new window)

Financials, Grants, & Contracts

$10,702,241
Total Budget

134*
Total Number of Grants & Contracts

*Represents an all-time high

Publications, Academics, & Community Service

Peer-Reviewed Articles

22

Peer-Reviewed Articles

5

Books and Book Chapters

4

Training Curricula

19

Other Dissemination Materials

Teaching

UNH Courses

28* UNH Courses
403* Students

Guest Lectures

17 Guest Lectures

Number of Students

11 E-Learning Courses
744* Students

*Represents an all-time high

Dissemination

Peer-Reviewed and Invited Presentations

International

14* International

National

112 National

State and Local

42 State and Local

Outreach & Engagement

34,266 Email Subscribers
222** Mass Emails

1305 Bookstore Orders
97.4% Bookstore Satisfaction Rate

41 Press Releases
20 Mentions in the Media

81,994** Website Visits
61,989** Website Visitors
9,087 Website Downloads

Social Media

Twitter Followers & Tweets

4611* Twitter Followers
716 Tweets

4,147* Facebook Followers
630 Posts

38* IOD Blog Posts
2,891* Visits

YouTube Views

108* Videos
6,097> Views
42,098* Min. Watched

Service

Community Service Activities

Local, State, and National Committees and Boards 48
Memberships in Professional Associations 34
Editorial and Review Activities 19
University Committees and Commissions 16
Granting Agency Review Activities 4
  • *Represents an all-time high

Technical Assistance

Hours Provided

6,197*

Hours Provided
Recipients

5,287

Recipients

 

Public Events

IOD Trainings, Workshops, Webinars, Conferences

51

IOD Trainings, Workshops, Webinars & Conferences
Participants

3,746

Participants
Average Satisfaction Rating

3.62

Average Satisfaction Rating
(Scale from 0-4)

*Represents an all-time high

Faculty, Staff, & Leadership

Faculty
(9)

Staff
(83)

Management Team

Jennifer DonahueJennifer Donahue
Finance Manager

Matthew GianinoMatthew Gianino
Associate Director

Andrew HoutenvilleAndrew Houtenville
Director of Research

Betsy HumphreysBetsy Humphreys
NH-ME LEND Program Director

JoAnne MalloyJoAnne Malloy
RENEW Program Director

Kelly Nye-LengermanKelly Nye-Lengerman
Acting Director

Luke ReynardLuke Reynard
CSS Director of Operations

Executive Committee

Kelly Nye-Lengerman
Director, Institute on Disability

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

Stephanie Patrick
Executive Director, Disability Rights Center - New Hampshire

Isadora Rodriguez-Legendre
Executive Director, New Hampshire Council on Developmental Disabilities

Christine Santaniello
Director, New Hampshire Bureau of Developmental Services

Santina Thibedeau
Administrator, Bureau of Special Education

Consumer Advisory Council & Office Locations

Consumer Advisory Council (CAC)

  • Lisa D. Beaudoin
  • Forrest Beaudoin-Friede
  • Jennifer Bertrand
  • Deodonne Bhattarai
  • Gina Colantuoni
  • Bonnie Dunham
  • Bob English
  • Richard Johnson
  • Darienne McGuinness
  • Stephanie Patrick
  • Danielle Poirier
  • Jill Prakop
  • Marie Primeau
  • Isadora Rodriguez-Legendre
  • Chrissy Shaffer
  • Jan Skoby
  • 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
57 Regional Drive, Unit 8
Concord, NH 03301
Voice: 603.228.2084 | Relay: 711
Fax: 603.862.3270

Professional Development Center
57 Regional Drive, Unit 8
Concord, NH 03301
Voice: 603.228.2084 | Relay: 711
Fax: 603.228.3270
events.iod@unh.edu

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

Downloadable Archives

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