june - august 2008
Bookstore Spotlight
Assistive Technology
Solutions in Minutes
by Therese Willkomm,
Ph.D.
A must-have book for
anyone who wants
to learn low cost
assistive technology
(AT) solutions that
can be constructed in
five minutes or less.
This book is filled
with over 600 color photographs of
innovative fabrication techniques
for constructing AT solutions for
home, school, work, and play.
Assistive technology “MacGyver”
Dr. Therese Willkomm shares her
experience with over 50 basic
tools and materials used in quick
solution development and rapid
prototyping. A companion 42-piece
AT Tools and Materials Kit is also
available. Assistive Technology
Solutions in Minutes is available
for $35 and can be found online at
www.iod.unh.edu/catalog.
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Mailing List
The IOD produces a variety of
publications, including Vision &
Voice, which communicate the ways
we are connected to individuals and
activities in New Hampshire and
across the country. If you would
like to be added to our mailing list,
e-mail contact.iod@unh.edu or call
603.862.4320.
What’s Inside
Addressing the Aging Population . . . . . . . . . . . 2
Consumer Satisfaction Survey Results. . . . . . . . 2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . . 3
Revising the NH Alternate Assessment . . . . . . . 4
Photojournalist and Documentary
Filmmaker Dan Habib Joins IOD Staff
The Institute on Disability is pleased to
welcome Dan Habib, director of the awardwinning documentary film Including Samuel, as
Filmmaker in Residence. After spending the last
20 years of his career as a photojournalist, most
recently as the photo editor for the Concord
Monitor, Habib is making the career change to
pursue his passion: creating documentary films
focusing on the critical issues at the intersection
of disability and contemporary society.
Shortly after their son Samuel was born with
cerebral palsy, both Habib and his wife Betsy
attended the IOD’s NH Leadership Series, a
seven-month program which supports selfadvocacy and leadership skills for individuals
with disabilities and their family members who
wish to affect change at personal, community,
and statewide levels. Habib now credits his
drive to focus on and work toward Samuel’s
inclusion to his time spent at the NH Leadership
Series. His film and personal labor of love—
Including Samuel—grew out of this passion.
“We are certain that Dan will have an enormous
impact on the IOD’s overall ability to conduct
outreach and to influence new audiences about
the value of including all people in family,
school, and community life,” said Mary Schuh,
the IOD’s Associate Director of Development
and Consumer Affairs. “His film has already
touched tens of thousands of lives.”
Habib will spend the next year promoting
Including Samuel
throughout New
Hampshire
and nationally.
Afterward, he plans
to continue making
films on disability
related topics.
The IOD welc
omes
Dan Habib as
Filmmaker
in Residence
(Photo by Isaia
h Habib)
Since its debut in November 2007, Including
Samuel has received national acclaim. The
film, which examines the educational and
social inclusion of youth with disabilities, is
built on the Habib family’s efforts to include
Samuel in all facets of their lives, a journey that
transforms each of them. Including Samuel also
features four other families with varied inclusion
experiences, plus interviews with teachers,
parents, students, and disability rights experts.
Including Samuel has won the annual Positive
Images in Media award from TASH, an
international group committed to the full
inclusion of people with disabilities, and was
named Best Documentary at the 2007 Somewhat
North of Boston Film Festival. Including
Samuel has also been featured on NPR’s All
Things Considered, as well as in the Washington
Post and the Boston Globe. Exceptional Parent
Magazine called it a “must see” film.
For more information on Including Samuel,
including screening dates and DVD sales,
please visit www.includingsamuel.com.
Autism Summer Institute to Feature Amanda Baggs
The IOD will be presenting the tenth annual
Autism Summer Institute on August 11-14,
2008, at the UNH campus in Durham, NH. This
year’s four-day Institute, “Emotion, Behavior,
and Belonging,” is open to anyone interested
in learning more about Autism Spectrum
Differences (ASD) from experts including
persons living with ASD. Topics will include
understanding the emotional experiences of
living with ASD, interpreting the meaning
of behavioral differences, and addressing
confusion by teaching the unwritten rules of the
social world.
Achieving a “Greener” IOD . . . . . . . . . . . . . . . 4
In keeping with
the tradition and
mission of the
conference, this
year’s Autism
Summer Institute
features keynote
presentations
by individuals
who experience
ASD. This
year’s keynote
presenters
include Amanda Baggs,
a 26-year-old autism
activist and a prolific
blogger who has recently
garnered national media
attention for several
self-produced YouTube
videos. Amanda’s
most popular video,
Amanda Bag
gs, 26, is
“In My Language,”
a prolific blog
ger and
documents
autism activis
t
her “constant
conversation” with the world around her and has
been viewed by more than 600,000 individuals.
Being unable to rely on verbal speech, Amanda
expresses herself independently by typing at 120
words per minute on a voice synthesis computer.
The Institute will also feature keynote
presentations by CarolAnn Edscorn, a Granite
State mother and master of the arts with
Asperger Syndrome, and Ros Blackburn, a
lecturer from England living with autism.
For more information on the Autism Summer
Institute, visit www.iod.unh.edu.
800315
I NSTITUTE ON D ISABILITY / UCED
10 WEST E DGE D RIVE
S UITE 101
D URHAM NH 03824
IOD Consumers
Surveyed
In order to gauge the effectiveness
of the IOD’s programs and resources
and identify areas for improvement, a
survey to measure overall satisfaction
of individuals who represent the IOD’s
constituent groups is made available
at all IOD events as well as on the
IOD’s home page. As of February
2008, the survey had been completed
by 368 people, including individuals
with disabilities, family members,
and professionals such as teachers,
psychologists, occupational therapists,
paraprofessionals, and case managers.
In response to the survey results,
the IOD has been encouraged to
learn that consumers appreciate the
personal contact and interaction of
the IOD’s professional development
opportunities, outreach sessions,
and technical assistance. The IOD is
currently considering how to expand
and capitalize on its strengths in this
area. Additionally, the IOD has plans to
target its publications and website for
improvements, with a possible follow-up
survey to gain more detailed information
about how they can be more useful.
To participate in the Consumer
Satisfaction Survey, visit the IOD
website at www.iod.unh.edu or request
a mailed copy by calling 603.862.4320.
2
Addressing the Challenges of an Aging Population
According to information from the U.S.
Department of Health and Human Services
and U.S. Census Bureau, the face of aging is
changing dramatically in the United States.
The population aged 65 and over is expected to
double in size within the next 25 years. By 2030,
nearly one in five Americans—some 72 million
people—will be 65 years or older.
approach to a “person-centered” system, a
concept birthed from the IOD’s initial systems
change work surrounding individuals with
developmental disabilities. The focus of a
person-centered system is on the individual,
their assets, and their network of family and
community support in developing a flexible and
cost effective plan to allow maximum choice
and control they need to live in the community.
A person-centered system respects and responds
to individual needs, goals, and values—ideas
which drive the creation of an individualized
plan as well as the delivery of services.
While national aging represents a triumph of
medical, social, and economic advances over
disease, it also presents tremendous challenges.
Population aging strains social insurance and
pension systems and challenges existing models
of social support. Legislation
New Hampshire is also working
such as the New Freedom
to support the growing body
By the year 2030,
Initiative—which states “that
of caregivers who are and will
nearly one in five
all Americans [will] have the
be delivering services to the
Americans—some
72
opportunity to live close to their
older adult population. Funds
million people—will be for caregiver respite services
families and friends, to live
65 years or older.
more independently, to engage
currently disbursed at the
in productive employment, and
state level will soon be made
to participate in community
available as flexible, consumerlife”—will test even the strongest service
directed service dollars, managed locally at
systems as the adult population grows.
ServiceLink Resource Centers across the state.
The IOD and BEAS are also collaborating to
In New Hampshire, the IOD is uniquely
provide numerous professional development
positioned to address the impending challenges
opportunities for caregivers, including training
facing the human services industry through
on legal issues, person-centered planning,
collaborations with the New Hampshire
excessive collecting or hoarding, and the
Department of Health and Human Services’
annual Real Choice Systems Transformation
Bureau of Elderly and Adult Services (BEAS)
Conference, among other things.
and Division of Community Based Care
Services. In response to the New Freedom
For more information on aging initiatives at
Initiative, New Hampshire is working to
the IOD, visit www.iod.unh.edu.
transform its long term care system of support
from a provider-driven, medically-oriented
Did You Know?
Demand for emergency department and
related ambulatory care among persons
with mental illness or substance use
conditions is rapidly rising in New
Hampshire.
Between 1997 and 2006,
the rate of ambulatory
care admissions increased
substantially, particularly
among 15-29 and 30-49 year
olds. For example, among
15-29 year olds, mental
illness hospitalizations
increased 55% (from 90 to
140 per 10,000 people).
While the rate of increase
among patients over
age 65 was lower, the
prevalence rate should
still be a concern as the
number of older adults is expected to
double by 2020.
To learn more, visit www.iod.unh.edu
to download the most recent Access
NH report on mental illness and
substance use hospitalizations in NH.
Feedback
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.
Share the IOD with a friend:
Please let friends or colleagues
know about us. Pass us along!
Highlighting IOD Donors
The New Hampshire Bar Foundation: Partnership in Support
The New Hampshire Bar Foundation plays
an important role in supporting a wide range
of legal services that serve New Hampshire
residents struggling to overcome
poverty, abuse, and discrimination.
Each year, Justice Grants are
made from the Bar Foundation’s
endowed funds to help ensure
access to the justice system for all
residents, especially those with
limited means.
For the past two years, the
foundation has chosen the NH
Leadership Series as one of its
select grantees, awarding Justice
Grants in the amount of $5,000 in
2007 and $3,500 in 2008. “We see
funding the NH Leadership Series
as an ideal way of accomplishing what we and
our Justice Fund donors are trying to achieve,”
said David Snyder, Executive Director of the
New Hampshire Bar Foundation. Donors like
The Stanley M. and Thalia M. Brown Fund and
the Judge Richard E. Cooper Fund have both
provided support for the NH Leadership Series.
and advocacy skills training. At this session,
participants meet with their legislators at the
State House for round-table discussions about
issues of concern. “The training session the
day before with a national expert was terrific,”
said Snyder. “During that session, family
members and legislators alike get a real handson education about the law and the justice
system—exactly the kind of work we are here to
support.”
The 2008 funding helps to support training for
participants who will emerge from the program
better prepared to address—and teach others
how to address—discrepancies among available
state supports and mental health services for
individuals with physical and developmental
disabilities.
“It is easy sometimes for people to assume that
programs like the NH Leadership Series have
the funds they need,” says Snyder. “But much of
the state funds that were available in the past for
such programs are gone, and it is important that
others step in to make sure this important work
continues.”
If you would like to learn more about making
“Our role is to work with community programs
a tax-deductible gift to the IOD, please
helping to find solutions to justice-related
problems,” said Snyder. “This means supporting contact:
Mary Schuh, Ph.D. – Associate Director of
everything from consumer issues training for
Development and Consumer Affairs
volunteer attorneys who advise lower-income
Institute
on Disability / UCED
people to programs like the NH Leadership
56 Old Suncook Road, Suite 2
Series, which prepares families to play a role in
the legislative process and educates legislators
Concord, NH 03301
about issues key to individuals with disabilities.”
603.228.2084
mary.schuh@unh.edu
In 2007, Justice Grant funds helped to
or visit www.iod.unh.edu for easy and safe
underwrite the series’ Legislative Session—one
online donation.
of seven such sessions during which the 35
program participants receive in-depth leadership
Employment for All: Supporting the
Career Goals of Individuals with
Disabilities
This skill-building workshop series
provides employment service personnel
with practical, “how-to” information on
assisting individuals with disabilities in
reaching their career goals.
Topic: Natural Supports in the Workplace
Date and Location:
Thursday, June 5, 2008:
Rivier College, Nashua, NH
Time: 9am–12pm
Cost: $35
Presenter: David Hagner, Ph.D.
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:
Thursday, June 5, 2008
Friday, June 6, 2008
Thursday, June 12, 2008
Friday, June 13, 2008
Friday, June 20, 2008
Location: All dates at UNH Pettee Hall,
Durham, NH except 6/13 at The Browne
Center, Durham, NH
Time: 9am–4pm
Cost: $650
Presenter: Patty Cotton, M.Ed.
*To take this course for UNH credit, do
not register through the IOD. Please
call the UNH Registrar’s Office at
603.862.1500.
Course Name: SW 697/897 –
Person-Centered Planning
*$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.
Getting a Handle on Hoarding
Will describe clinical disorders and
cognitive traits associated with hoarding
as well as recent research findings.
In addition, the presenter will provide
methods and tools for intervening in
hoarding issues.
Date & Location:
Tuesday, June 17, 2008:
Rivier College, Nashua, NH
Time: 9am–12pm
Cost: $35
Presenter: Elizabeth Burden, LICSW, MPH
*Approved by the NH Chapter NASW for
2.5 Category 1 Continuing Education
Credits for social workers.
Powerful Tools for Caregivers: Class
Leader Training
This 2½ day training will give participants
the knowledge, skills, and tools to teach
the course, Powerful Tools for Caregivers
(PTC). This course, developed by Legacy
Caregiver Services in Portland, OR, is a
6-week educational program to provide
family caregivers with tools to increase
their self-care and confidence. PTC is a
nationally recognized train-the-trainer
model program.
Dates & Location:
June 24–26, 2008
E.F. Lane Hotel, Keene, NH
Time: Tuesday–Wednesday: 8am–5pm;
Thursday: 8am–1pm
Cost: $750
Presenter: Legacy Caregiver Services,
Portland, OR
*Participants must register in pairs. Space
is limited to 10 pairs of participants.
*Registration fee does not include dinner
and accommodations. Overnight rate
($99 plus tax) available at E.F. Lane Hotel
for participants until May 23, 2008.
Second Annual Assistive Technology
Summer Institute
A fun summer workshop series with
hands-on Assistive Technology (AT)
learning. Presented by ATinNH.org in
collaboration with Northeast Passage
and Crotched Mountain.
Dates & Topics:
Monday, August 4: Adaptive Golf Clinic
Tuesday, August 5: It’s Summer, Let’s Play!
Using Play to Increase Augmentative
and Alternative Communication Success
Wednesday, August 6: The Latest and
Greatest Technology for Trainers and
Teachers
Thursday, August 7: Jammin’ with Dave
and Dan – Adaptive Music for All
Friday, August 8: IntelliTools Training
Classroom Suite 4
Location: Canterbury Woods Country
Club, Canterbury, NH
Time: Monday: 9am–11:30am;
Tuesday–Friday: 9am–3pm
Cost: Monday: $35; Tuesday-Friday: $75
each; attend the entire institute for $300
Presenters: Tom Carr, CTRS, Dr. Phyllis
Watson, CCC-SLP, Dr. Therese Willkomm,
Dan Herlihy, and David Kontak
*Laptop computers are required for 8/6
and 8/8. A limited number of loaner
laptops will be available.
Tenth Annual Autism Summer Institute
Emotion, Behavior, and Belonging:
New Perspectives on Including
Children and Youth with Autism
Spectrum Differences in Schools and
Communities
This 3½ day conference will feature
keynote presentations by individuals
with ASD, breakout sessions on topical
areas such as functional behavioral
assessment, bullying, and the role of
paraprofessionals, and opportunities
to develop specific action plans.
Participants will gain skills and
knowledge that will help support the full
participation of students with ASD in their
schools and communities. Presented by
the New Hampshire Resource Center on
Autism Spectrum Disorders.
Dates and Location:
August 11–14, 2008
Holloway Commons, University of New
Hampshire, Durham, NH
Time: Monday–Wednesday: 8:15am–
3:30pm; Thursday: 8:15am–12pm
Cost: Professionals: $399
Parents/Full-Time Students/SelfAdvocates: $299
Groups of three or more (subject to
verification): $349
Keynote(s) only: $30 each
Keynote Presenters: Amanda Baggs,
CarolAnn Edscorn, Ros Blackburn
*Reduced rate available for rooms at
the New England Center and Holiday Inn
Express until June 26, 2008.
Third Annual Achievement in Dropout
Prevention and Excellence (APEX)
Summer Leadership Institute
Dropout Prevention: Reforming
New Hampshire’s High Schools with
Leadership, Teamwork, and Data-Based
Decision Making.
Dates and Location:
August 20–21, 2008
Attitash Inn and Conference Center,
Bartlett, NH
Time: Wednesday: 8:30am–4:45pm,
dinner at 6:30pm; Thursday: 8:30am–
1:30pm
Cost: $125 per person; $240 per person
with overnight accommodations
Presenters: Paul K. Leather, LeDerick
R. Horne, Hank Bohannon, Ph.D., Larry
Kortering, Ph.D., and Howard Muscott,
Ed.D.
Save the Date
Real Choice Conference
Transforming NH’s Home and
Community Based Long Term Support
System
Date: October 21, 2008
For more information and to register, visit www.iod.unh.edu or call 603.228.2084
3
IOD Leadership
Jan Nisbet, Ph.D. – Director
Linda Bimbo, MS – Deputy Director
Mary Schuh, Ph.D. – Associate Director of
Development and Consumer Affairs
Cheryl Jorgensen, Ph.D. – Research Assistant
Professor
Matthew Gianino – Manager of Marketing and
Communications
Susan Fox, M.Ed., MA – Clinical Assistant Professor
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
Barbara Arrington – 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
Disabilities 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
4
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
Kathy Bates – Somersworth, NH
Regina Bringolf – Hancock, NH
Stacey Brooks – Madbury, NH
Robin Carlson – Rochester, NH
Joyce Chisholm – Concord, NH
Chris Collier – Plymouth, NH
Bonnie Dunham – Merrimack, NH
Ellen Edgerly – Rochester, NH
Jocelyn Gallant – Salem, NH
Nathan Gams – Hampton, NH
Michelle Jarvis – Hampton Falls, NH
Pascal Kalinganire – Manchester, NH
Dan Louney – Bedford, NH
Debra Nelson – Nottingham, NH
Stacy Shannon – Concord, NH
Julie Smith – Durham, NH
Jim Tobin – Effingham, NH
Pat Vincent-Piet – Manchester, NH
Marian West – Concord, NH
Support the IOD!
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.
IOD Collaborates with NH Department of Education
to Revise the Alternate Assessment
In 1998, New Hampshire was one of only
• A comprehensive professional development
a handful of states in the country creating a
and technical assistance process in the area
statewide alternate assessment to measure access
of alternate assessment, and
to the general curriculum and achievement in
• Recommendations to revise the Alternate
reading, writing, math, and science for students
Assessment for students with significant
with significant cognitive disabilities. Since that
cognitive disabilities.
time, much has changed surrounding alternate
assessments. First, federal regulations are clearer Three key research and development teams for
about the need for valid and reliable assessment the Gaining Access project will be comprised
design. Second, strides have been made in the
of experts from various national centers and
application of instructional technology and
universities, as well as NH expert educators,
augmentative communication to help students
administrators, and parents/guardians of students
better show what they
with significant cognitive
know. And third, higher
“This will improve access to disabilities.
expectations are being held
and progress in academic
The proposed outcomes
regarding students’ ability to
learning
for
ALL
students
of the Gaining Access
learn the general education
throughout
New
Hampshire.”
project will benefit not
curriculum.
only the approximately
Because of the knowledge gained and progress
1,200 students participating in the NH Alternate
made toward bettering alternate assessment
Assessment, but all of New Hampshire’s
systems as a whole over the past ten years, NH’s students. “New Hampshire is a national leader
Alternate Assessment is in need of review and
in best practices for educating students with
revision.
disabilities,” said Michael McSheehan, Gaining
Access Project Coordinator. “With this project,
In view of this, the Institute on Disability
we are developing what we hope will be the
is collaborating with the NH Department
standard for the next generation of alternate
of Education to improve the NH Statewide
assessments. Not only will this project address
Assessment System (particularly in the area of
current federal requirements and incorporate
the NH Alternate Assessment) as part of the
the knowledge we’ve gained, it will allow
multi-year project, Gaining Access to What
us to move toward tailoring assessments to
Students with Significant Cognitive Disabilities
match individual students’ needs and document
Know. Funded by a grant from the U.S.
their progress in the general curriculum. We
Department of Education, the Gaining Access
anticipate that this will improve access to and
project will develop the following:
progress in academic learning for ALL students
• An expanded, user-friendly map of learning
throughout New Hampshire.”
expectations for students with significant
For more information on the Gaining Access
cognitive disabilities at each grade level
project or to participate in project activities,
• New charting tools for documenting student visit the Gaining Access webpage at
progress in learning academic content
www.iod.unh.edu.
Achieving a “Greener” IOD
With all of the recent talk of greenhouse gas
emissions, carbon footprints, and global climate
change, the IOD is sitting up and taking notice
of the need to be more “green” at work.
At the quarterly All-IOD meeting in March
2008, the IOD was fortunate to hear about what
UNH is doing to be more green in day-to-day
life and in the long term. Tom Kelly, Ph.D.,
director of UNH’s Office of Sustainability, and
Denise Blaha, co-director of the New Hampshire
Carbon Challenge™, gave an enlightening
presentation on the complete definition of
sustainability and cutting carbon dioxide
emissions to reduce energy consumption.
Following the March meeting, the IOD’s
Strategic Team has committed to promoting
sustainability within the IOD. To this end, the
IOD has drafted several sustainability goals,
including:
• Reducing the carbon output of IOD
employees by 200,000 pounds per year, or
approximately 5,000 pounds per person
• Reducing utility usage at IOD offices by
10% per year
• Reducing waste at all IOD offices by 10%
per year, and
• Reducing the number of trips taken by IOD
employees between the IOD’s Concord and
Durham offices by 10% per year.
IOD staff members were also encouraged to take
the New Hampshire Carbon Challenge™ in an
effort to more accurately measure individual
commitment to carbon emissions reduction.
To date, a few IOD staff members have taken
up the Challenge, collectively saving over
15,000 pounds of carbon and over $2,000 in the
coming year. Other employees are swapping out
incandescent light bulbs for compact fluorescent
ones, using ceramic dishes and cups in place
of paper plates and plastic cups, and printing
documents double-sided to conserve paper.
For more information and ideas on how you
can be more “green,” visit
www.sustainableunh.unh.edu.
P.S.: This newsletter is printed on 30% postconsumer recycled paper. Please recycle!
Consumer Satisfaction Survey
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.