Seeing the Charade: What
We Need to Do and Undo to Make Friendships
Happen by Carol Tashie, Susan
Shapiro-Barnard, and
Zach Rossetti
Friendship matters for everyone, and everyone deserves a full and rich social life. For far too many students with disabilities, loneliness is still their most common complaint. Seeing the
Charade, written by former
IOD staff, looks at the reasons why real friendship is such an elusive goal for so many students with disabilities. It explores the barriers to friendship that exist in our schools and communities, offers some suggestions for overcoming these barriers, and proposes specific support strategies for students with disabilities. Seeing the Charade is available for $25 at www.iodserver.unh.edu/iodbookstore .
The IOD produces numerous publications, including Vision &
Voice , which communicate the ways we are connected to individuals and activities in New Hamshire and across the country. If you would like to be added to our mailing list, sign up online at www.iod.unh.edu or call 603.862.4320.
Trainees Advocate for Autism . . . . . . . . . . . 2
IOD’s “MacGyver” . . . . . . . . . . . . . . . . . . . . . 2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . 3
Project Spotlight: APEX II. . . . . . . . . . . . . . . . 4
From the Consumer Advisory Council . . . . 4
Welcome to the first edition of Vision & Voice , the Institute on Disability’s quarterly newsletter describing our efforts to support children and adults with disabilities in New Hampshire. In this first issue, we touch on many facets of our work, including assistive technology, student dropout prevention, and initiatives around public policy. In addition, Vision & Voice illustrates ways in which individuals connected to our mission work toward improving the quality of life in the Granite State.
Since 1987, the IOD’s mission has been to advance policies and systems changes, education, research, and promising practices that strengthen communities and ensure full access, equal opportunities, and participation for all people. We regularly work alongside the
Institute for Genetics and Child Development at Dartmouth Medical School, the Institute for
Health, Law, and Ethics at the Franklin Pierce
Law Center, and the Center on Community
Economic Development and Disability at
Southern New Hampshire University to review and identify current and emerging issues facing children and adults with disabilities. We also continue to explore ways individuals with disabilities and their families can participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, economic independence, and full community participation.
It is evident that employment, transportation, affordable and accessible housing, quality education, family support, aging and long term care, and children’s mental health continue to be high priorities across New Hampshire. Assisting in the design and evaluation of solutions that improve services and supports is central to our ongoing activities. Although we have had many successes over the past 20 years, there is much more work to do. We hope that Vision &
Voice gives you a glimpse of our collaborations with many individuals and organizations to accomplish these goals. Enjoy!
When Samuel was about a year old, my wife
Betsy and I used to wonder constantly if he would ever crawl, sit up, or walk. We would compare notes each night, discussing the good and not so good points of his day. We finally figured out that constantly worrying about what
Samuel will or won’t do in the future just isn’t the way to be his parents. We have to live in the present, look at who he is as a person, and see his experience as our son. This realization didn’t come quickly, but we’ve been learning ever since.
Samuel changed the way I look at everyone around me. He has taught me not to pre-judge anyone by how they talk, or whether they can talk, or how they move or see or hear.
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Samuel taking a turn at the cockpit controls
He has taught me patience and not to make assumptions. We still have questions. How will he make friends? How can he get a job that he likes? How can he become a fully-realized adult?
Including Samuel, a 50-minute film to be released this fall, documents my family’s efforts to include Samuel in all facets of school and community. Including Samuel also features four other families with varied inclusion experiences plus interviews with educators, students, parents, and disability rights experts, including
Jan Nisbet and Cheryl Jorgensen of the IOD.
I look forward to introducing you to Samuel, and also to Keith, Alana, Emily, Nathaniel and many others when I begin screening and distributing the film this fall.
Dan Habib and his wife Betsy McNamara are graduates of the NH Leadership Series, the seven-month IOD program to which
Dan credits his passion to focus on and work toward Samuel’s inclusion. For more information and to sign up for the mailing list with film updates, go to www.includingsamuel.com
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UNH faculty member Dr.
Therese Willkomm calls herself
“MacGyvette.” But she doesn’t fight crime like the resourceful
1980s television sleuth; rather, she fashions tools from everyday objects that make life easier for people with disabilities.
Therese, clinical assistant professor of occupational therapy and director of ATinNH at the IOD, is a specialist in assistive technology. And while her beneficiaries have some form of disability,
Therese’s work rarely deals with expensive wheelchairs, specialized computers or complex communication systems. “Eighty percent of assistive technology costs $100 or less,” she says.
Therese’s solutions are custom items she
“MacGyvers” from inexpensive, ordinary items like Plexiglas, PVC, and assorted tapes as well as off-the-shelf products like wheeled carts, easy-grip tools, or two-way radios. She is also speedy and resourceful; her trademark is creating solutions in five minutes or less.
Therese shares many of her creative solutions in two books, both of which are available through the IOD bookstore at www.iodserver.unh.edu/iodbookstore.
For more resources, check out www.ATinNH.org.
The number of children diagnosed with autism has risen dramatically in recent years, from
1 in 10,000 in the 1970s to 1 in 150 today.
Because of this trend, autism has become a topic of significant public interest, seeing coverage in the news, on talk shows, and even in the halls of Congress. Our government has made strides toward addressing the trend, proposing that millions of dollars be allocated for autism research, screening, early detection and intervention, and for support systems, but those funds have yet to be made available for public use.
Members of the New Hampshire Leadership
Education in Neurodevelopmental & Related
Disabilities (NH-LEND) training program recently had the opportunity to make their voices heard in support of more federal funding for autism services and supports. While attending the annual Disability Policy Seminar in Washington, D.C., the trainees spoke with
Senator Judd Gregg’s staff about supporting the appropriations for the Combating Autism Act and the Expanding the Promise for Individuals with Autism Act.
“It was a lot of work to prepare our statement,” said Trish Cox, NH-LEND trainee, “but we chose to address these acts because of the strong personal experiences we’ve had related to autism.”
NH-LEND trainees participate in the
Seacoast Child Development Clinic, an interdisciplinary evaluation service for children with developmental disabilities, including children with autism spectrum disorders.
“Having firsthand experience with children who experience autism and their families has made a big impression on the group,” said Rae
Sonnenmeier, UNH clinical assistant professor and NH-LEND coordinator. “I thought they did a fabulous job of identifying key points and telling a cohesive story in order to request more funding. This trip was critically important to the trainees’ understanding that they can have an effect on public policy.”
To learn more about the Seacoast
Child Development Clinic, visit www.seacoastclinic.unh.edu
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• 19% of New Hampshire residents are
concerned about losing their ability
to drive in the next few years.
• 53% of New Hampshire adults would
find getting things in the community
difficult if they needed to use crutches
or a wheelchair for at least 4 weeks.
• No public transportation system
exists in more than 80% of New
Hampshire’s communities.
Data Source: Feb. 2006 Granite State Poll
The IOD is pleased to offer research assistance to area foundations, service providers, and advocates, helping to guide the evolution of sustainable, community-based services and supports in New Hampshire. The IOD regularly collaborates with several state agencies to bring in federal grant dollars that provide critical resources for Granite
State residents. Additionally, the IOD participates in and helps coordinate the NH Research Group, a collection of over 100 researchers and evaluators who meet to share knowledge, skills, and best practices four times a year.
back
Have a comment, suggestion, or story idea? We value your input.
E-mail contact.iod@unh.edu
or call 603.862.4320
to let us know how we’re doing and how we can better serve you.
Please let friends or colleagues know about us. Pass us along!
As a non-profit, community oriented organization, the IOD is dedicated to providing needed services and supports for individuals and families in communities throughout New
Hampshire. As such, the IOD relies heavily upon the generosity of private individuals, foundations, and corporations to sustain this work and provide help to those in need. Below are highlights of gifts received in recent months.
The Lloyd G. Balfour Foundation , managed by Bank of America Philanthropic Management, awarded the third installment of a fouryear, $100,000 grant in support of the New
Hampshire Leadership Series. These funds are helping to support costs for Leadership
Series participants, including full tuition, accommodations, meals, childcare, and travel reimbursement.
The
The
New Hampshire Bar Foundation
$5,000 in support of the Leadership Series’
Legislative Session. As the sixth of the seven sessions in the Series, the Legislative Session includes training in the legislative process, an introduction from Governor John Lynch, and a day of meetings at the State House with participants’ legislators. This grant was made possible by the New Hampshire Bar Foundation,
Stanley M. and Thalia M. Brown Fund, and the
Judge Richard F. Cooper Fund.
Gone Giving Circle
awarded awarded a grant of
$30,000 to support the NH Leadership Series, the fundraising capacity of the IOD, and general operating costs. The IOD has leveraged this award to help increase giving from individuals toward the Leadership Series and to expand the development program. The Gone Giving
Circle is a group of like-minded individuals with backgrounds in media, science, technology, social issues and philanthropy. They combine their time, talents and money available for charitable giving to research non-profit organizations and award grants from the shared pool.
If you would like to learn more about contributing to the IOD, please contact:
Mary Schuh, Ph.D. – Associate Director of
Development and Consumer Affairs
Institute on Disability / UCED
56 Old Suncook Road, Suite 2
Concord, NH 03301 mary.schuh@unh.edu

E V E N T S / W O R K S H O P S
Autism Spectrum Disorder Leadership &
Skill Building Seminar
Three-part seminar will discuss evidencebased exemplary practices for supporting children (birth to 3) with or at-risk for autism spectrum disorder (ASD) and their families.
Dates & Locations:
Manchester Seminar Set – Wednesday, April
11 (session 1), Monday, April 23 (session 2)
& Wednesday, June 6 (session 3): Manchester
Library, Manchester, NH
North Country Seminar Set – Tuesday, April 24
(session 1), Wednesday, April 25 (session 2)
& Tuesday, June 12 (session 3): Granite State
College, Conway, NH
Seacoast Seminar Set – Wednesday, May 2
(session 1), Tuesday, May 29 (session 2) &
Tuesday, June 26 (session 3): Portsmouth
Public Library, Portsmouth, NH
Time: 9am – 3:30pm
Cost: Free
Presenters: Rae Sonnenmeier, Ph.D., CCC-SLP,
Clinical Assistant Professor, Institute on
Disability Ann Dillon, M.Ed., OTL, Clinical
Assistant Professor, Institute on Disability
Presenters: Michael Callahan - President,
Marc Gold & Associates
John Vance - Executive Director, ACCESS
(Associates in Career and Community
Employment Support Services, Inc.)
Topic: Supported Self-Employment and
Benefits Planning
Date & Location:
Thursday, May 31, 2007: The Common Man,
Concord, NH
Time: 9am – 4pm
Cost: $45
Welcome Address: Paul K. Leather - Director,
NH Vocational Rehabilitation
Presenters: Nancy Brooks-Lane - Director,
Developmental Disabilities Services and
Supports at Cobb and Douglas Counties
Community Services Boards
JoAnne Malloy - Project Director, Institute on
Disability
Nellie Goron - Program Director, Granite State
Independent Living
Whose Decision is it Anyway?
Training on Legal Issues for Those Who
Work with Seniors
Will help those who work with seniors to understand the rules and laws around decision-making. Participants will be able to describe who can and cannot make their own decisions as well as the legal documents that are required to give others decision- making authority.
Dates & Locations:
Thursday, May 17, 2007: The Conference
Center at Lake Opechee Inn, Laconia, NH
Thursday, June 21, 2007: Crowne Plaza
Nashua, 2 Somerset Parkway, Nashua, NH
Time: 8am – 12pm
Cost: $12
Presenter: Mary McGuire, Esq.
*Approved by the NH Chapter NASW for three
(3) Category 1 Continuing Education Credits in Ethics for social workers.
Methods, Models & Tools
Person-Centered Planning Facilitation
Training
An intensive five-day course designed to help develop the competencies needed to facilitate consumer and family-directed career, education and life planning.
Dates & Locations:
Monday, May 21, 2007: UNH, Durham, NH
Tuesday, May 22, 2007: UNH, Durham, NH
Thursday, May 31, 2007: UNH, Durham, NH
Friday, June 1, 2007: The Browne Center,
Durham, NH
Monday, June 4, 2007: UNH, Durham, NH
Time: 9am – 4pm
Cost: $650
Presenter: Patty Cotton, M.Ed.
*$50 discounts are available for each person when registering in groups of three (3) or more.
*Approved by the NH Chapter NASW for thirty
(30) Category 1 Continuing Education Credits for social workers.
Employment Options Seminars
Two separate seminars will present evidencebased best practices to develop the skills necessary to support individuals with disabilities and their pursuit of meaningful employment (individual session topics below).
Topic: Discovery, Person-Centered Planning, and Employment
Date & Location:
Friday, May 18, 2007: The Common Man,
Concord, NH
Time: 9am – 4pm
Cost: $45
Welcome Address: John A. Stephen -
Commissioner, NH Department of Health and Human Services
Microboard Symposium: Building a Future
Learn about creative things families are doing around transition. Families from the Microboard Project will discuss the goals they’ve set, struggles they’ve had and resources used as they journey towards life after high school. Peggy Teravainen from Granite State
Independent Living will present on benefits information and work incentives that can be utilized throughout the transition process.
Date & Location:
Friday, June 1, 2007: The Common Man,
Concord, NH
Time: 8:30am – 4pm
Cost: $40 (free for Microboard members)
Presenters: Microboard families and Peggy
Teravainen from Granite State Independent Living
Housing Options for Those with Disabilities
A conference designed to present ways to access community-based housing options for those with disabilities and long-term care needs.
Date & Location:
Thursday, June 14, 2007: Center of NH,
Radisson Hotel, Manchester, NH
Time: 9am – 3pm
Cost: $50 ($35 for seniors)
Presenters: Ann Denton, M.Ed., Advocates for
Human Potential, and Bill Ray, Director of
Planning and Policy, New Hampshire Housing
The 9th Annual Autism Summer Institute
Raising Expectations: Presuming
Competence! The Importance of High
Expectations for Learning, Communication and Friendship
This four-day conference will provide the opportunity to hear and learn from persons with Autism Spectrum Disorders (ASD) and other experts about the importance of presuming competence for those with ASD.
Participants will discuss the implications of presuming competence on children’s inclusion in general education classrooms.
Dates & Location:
August 13-16, 2007: Holloway Commons,
University of NH, Durham, NH
Cost: $399 (Self-Advocate / Student / Parent rate: $299, Keynote only rate: $60 each)
Presenters: Ros Blackburn, Jamie Burke,
CarolAnn Edscorn, and Donna Williams
Response to Intervention & Beyond with
Dr. Wayne Sailor
Will address the concerns of teachers in the general education classroom around improving academics and classroom engagement of students with and without disabilities. Participants will learn the evolution of instructional approaches from
Positive Behavioral Interventions and Supports
(PBIS) to Response to Intervention (RTI) to the
School-wide Applications Model (SAM).
Date & Location:
Thursday, September 20, 2007: Highlander Inn,
Manchester, NH
Time: 9am – 2:30pm
Cost: $99
Presenter: Wayne Sailor, Ph.D.
Assistive Technology Summer Institute &
Beach Party
Dates: August 6-9, 2007
The Institute on Disability’s 20th
Anniversary Celebration
Date: October 4, 2007
Making Choice Real: Transforming
Long-Term Systems of Support
Date: October 24, 2007
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4
IOD Leadership
Jan Nisbet, Ph.D. – Director
Linda Bimbo, MS – Deputy Director
Mary Schuh, Ph.D. – Associate Director of
Development and Consumer Affairs
Peter Antal, Ph.D. – Research Associate
Cheryl Jorgensen, Ph.D. – Research Assistant Professor
Matthew Gianino – Manager of Marketing and
Communications
Executive Committee
Gordon Allen – Executive Director
New Hampshire Developmental
Disabilities Council www.nhddc.org
Matthew Ertas – Bureau Chief
Bureau of Developmental Services
New Hampshire Department of Health
and Human Services www.dhhs.state.nh.us/DHHS/BDS
James McCarthy, Ph.D. – Dean
College of Health and Human Services
University of New Hampshire www.shhs.unh.edu
Santina Thibedeau – State Director of
Special Education
New Hampshire Department of Education www.ed.state.nh.us
Richard Cohen, JD – Executive Director
Disability Rights Center www.drcnh.org
UCED Partners
Tom Bunnell, JD – Director
Michelle Winchester, JD – Health Policy Analyst
Institute for Health, Law and Ethics
Franklin Pierce Law Center www.fplc.edu
John Moeschler, MD – Program Director
Dartmouth Center for Genetics and Child
Development
Dartmouth Hitchcock Medical Center www.dhmc.org
Michael Swack, Ph.D. – Dean
Tobey Davies, MS – CCEDD Director
School of Community Economic Development
Southern New Hampshire University www.snhu.edu
Consumer Advisory Council
Becky Annan - Loudon, NH
Kathy Bates - Somersworth, NH
Regina Bringolf - Hancock. NH
Stacy Brookes - Madbury, NH
Chris Collier - Plymouth, NH
Bonnie Dunham - Concord, NH
Ellen Edgerly - Rochester, NH
Jocelyn Gallant - Salem, NH
Nathan Gams - Hampton, NH
Joyce Johnson - Concord, NH
Pascal Kalinganire - Manchester, NH
Miriam Lockhart - West Hartford, CT
Dan Louney - Bedford, NH
Deb Nelson - Nottingham, NH
Stacy Shannon - Concord, NH
Mary Trinkley - Concord, NH
Pat Vincent - Manchester, NH
Marion West Concord, NH
As a community oriented nonprofit focused on ensuring that equal opportunities and a satisfying quality of life are accessible to all persons, we rely on the generosity of supporters like you to help further the mission of the IOD. If you would like to contribute to the IOD, tax-deductible donations can be made:
Online www.iod.unh.edu
Mail
10 West Edge Drive, Suite 101
Durham NH 03824
Phone
800.378.0386
An IOD staff member will assist you with the process and answer any questions you may have about your contribution.
As a senior in high school, 18-year-old Ryan was on the verge of dropping out. He showed little motivation, having successfully completed only about one-fifth of the credits he needed to graduate. His attendance was sporadic. He slept through class. He defied teachers when asked for assignments. Some might have considered him a lost cause.
In November 2006, a targeted team of mentors and faculty came to Ryan’s rescue. Through a series of informal meetings, the team was able to find out more about Ryan’s family history, his social network, and his dreams for the future. He began a new set of classes in
January 2007, and by the end of February,
Ryan had completely turned around, becoming alert, animated, and engaged in meetings with the team, all while achieving an “A” in art and a “B” in finance. Ryan is now working at the Job
Corps Center in Maine and is on track to receive his GED by the end of the summer.
Ryan’s success story is one of many that can be attributed to the work of the IOD’s APEX project, or Achievement in Dropout Prevention and Excellence. APEX works with New
Hampshire high schools to induce a cultural shift in how teachers address discipline, seeking to prevent inappropriate behavior through a systematic and consistent school- wide discipline model.
“As a school, we have been working diligently to combat our dropout rate,” said Sean Peschel, faculty member at Somersworth High School.
“APEX has helped focus and organize our faculty’s energy and initiatives. It’s not an overnight fix. It takes time, thought, and patience, but it will bring us together with commonality and continuity.”
Schools are seeing results because of APEX, including one high school that experienced a nearly 400% reduction in its dropout rate, from
16.8% to under 3% in three years. The current
APEX project (APEX II) has expanded into
11 high schools throughout New Hampshire, addressing the needs of over 3,000 students at risk for dropping out, and has become a national model for dropout prevention.
For more information on APEX II, visit www.iod.unh.edu
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– Howard Winters
Since 1992, the IOD’s Consumer Advisory
Council (CAC) has been meeting to support the vision, mission, and values of the IOD by providing information and guidance on issues affecting New Hampshire residents with disabilities and their families. Our 18 members represent a variety of consumers: parents, selfadvocates, and spokespersons from the Parent
Information Center, the Disability Rights
Center, and the Developmental Disability
Council, among others. As part of quarterly meetings, we provide essential feedback on proposals and initiatives, consult on the IOD’s plans and direction for the future, and bring other pertinent issues to the attention of the director.
The past year has afforded us many privileges.
The Council formalized its purpose by electing officers, writing by-laws, and setting term limits. Several of the IOD’s major projects gave insightful presentations to the CAC, including the NH Microboards project, the Resource
Center on Autism Spectrum Disorders, and
Beyond Access. We also reviewed the summary of the IOD’s five-year plan, pledging to hold the
IOD accountable for achieving the goals it set forth. On behalf of the IOD, Council member
Stacy Brookes attended the Association of
University Centers on Disabilities conference in
Washington, D.C., where she was able to attend workshops as well as meet with CAC members from around the country to discuss how they interact with their universities and consumers, attract new council members, and develop issues of interest to their consumers.
To guide us in our work, the IOD depends upon direct input from individuals connected to our mission. We invite you to share your thoughts and ideas by participating in our
Consumer Satisfaction Survey. The survey is available online at www.iod.unh.edu or you may request a mailed copy by calling 603.862.4320.