spring 2011
Written as a
valuable resource
for persons
diagnosed with
Alzheimer’s
disease, this
essential guide
provides
straightforward, practical
information on coping with the
diagnosis, effectively managing
symptoms, finding meaningful
activity, planning for the
future, strategizing for easier
communication, participating in
research and clinical trials, and
much more. Available for $19 at
www.iodbookstore.com.
Join Our
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
Brianna Dillon Leadership Medal Awarded. . . .2
IOD Staff Complete Doctoral Work. . . . . . . . . . 2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . . 3
Annual Lecture Features Lost in Laconia . . . . . 4
Beth Dixon: UNH Staff Excellence Award. . . . . .4
In 1991, New Hampshire became the first state
in the country to provide all services in the
community, and 80% of the current disability
population lives in the community with their
families. The state’s in-home support waiver
for individuals with disabilities costs the state
less than $5 million per year (the cost to place
these individuals in an institution would be
approximately $46 million per year). And most
of the approximately 150,000 people with
disabilities living in New Hampshire (over 11%
of the state population) have strong community
connections and strive to be productive
members of society.
New Hampshire has a strong legacy and
reputation as being a model state as it relates
to supporting individuals with disabilities.
Many of the state’s successes can be attributed
to how New Hampshire has made systemic
decisions based on both available data and the
values espoused in the state constitution that
“All men have certain natural, essential, and
inherent rights—among which are, the enjoying
and defending of life and liberty; acquiring,
possessing, and protecting property; and, in a
word, of seeking and obtaining happiness.”
Ultimately, “To The Point” encourages all state
residents not to presume the incompetence of
individuals with disabilities. Rather, we should
acknowledge that not only are individuals with
disabilities competent, but they also work,
vote, volunteer, learn, recreate, socialize, raise
families, and have a significant impact on the
state’s economy.
To obtain a copy of “To The Point,” visit
www.iod.unh.edu.
IOD Bids Farewell to One of its Co-Founders
In April, the IOD said farewell to one of its
most influential and dedicated staff members.
After 24 years, Cheryl Jorgensen is moving
on to pursue new endeavors as an inclusive
education consultant and UNH affiliate faculty
member.
Cheryl’s tenure at UNH predates the creation
of the IOD by two years, having begun her
work with the Center for Health Promotion and
Research at the School of Health and Human
Services. Though her background and degree
focused on health education and public health,
her first project was a special education training
grant working with the Portsmouth and Nashua
schools to help them “integrate” students with
“severe disabilities” into regular classes. Since
then, Cheryl has been deeply embedded in
the IOD’s work around inclusive education,
especially for students with the most significant
disabilities. One
of her greatest
accomplishments,
the Beyond
Access model
demonstration
project, assisted
school teams to
learn, implement,
and refine a
student supports
and team
I NSTITUTE ON D ISABILITY / UCED
10 WEST E DGE D RIVE
S UITE 101
D URHAM NH 03824
Living Your Best
with Early-Stage
Alzheimer’s
Lisa Snyder,
MSW, LCSW
In the last few months, in large part due to
New Hampshire state budget concerns and
negotiations, a fair amount of statements have
been made about New Hampshire citizens who
experience a disability and the infrastructure
that exists to support their independence and
access to fundamental services. In response, the
Institute on Disability has produced “To The
Point,” a research-based pamphlet providing
statistics and perspective about disability in New
Hampshire. On topics ranging from education
to provision of services to fundamental
assumptions, “To The Point” gets to the heart of
disability as a reality within the community.
800315
Bookstore Spotlight
An Introduction to Disability in the Granite State
planning model that blends
best practices in inclusive
education, augmentative
communication,
collaborative teaming, and
professional development.
The success of the model
spawned additional NHbased improvement
projects, inclusive education personnel
preparation grants, and a book, and it became
foundational in the development of the National
Center on Inclusive Education.
“From the inception of the IOD, Cheryl’s vision
for inclusive schools and communities extended
into all activities and ultimately to the families,
classrooms, and communities we serve,”
said Mary Schuh, IOD Associate Director.
“Cheryl never accepted the status quo—she
instead challenged us to evaluate our roles and
practices and consider ways to work effectively
and efficiently to ensure that every student
is presumed competent and supported to be
successful in general education. As long as we
continue to ask ‘What worked?’ ‘What didn’t?’
and ‘How can we do things differently?’ with
our eye on the prize of full inclusion, Cheryl’s
presence will carry on.”
We thank you, Cheryl, for your many years of
tireless service to the IOD and its vision. We
will miss you!
IOD Staff Complete
Doctoral Work
Maggie Hassan Receives First Brianna Dillon Medal
Three IOD staff members completed
doctoral work in April and will receive
their degrees as part of the class of
2011.
This year’s NH Leadership Series reunion
featured more than just the raffles, the auction,
and the opportunity for past graduates to
reconnect. This year marked the awarding of the
inaugural Brianna Dillon Leadership Medal.
JoAnne Malloy researched the effects
of social capital on four youth at
risk of dropping out of high school.
Through skill-building and leveraging
of social resources, JoAnne designed
and initiated a supportive intervention.
JoAnne’s degree is in education from
UNH.
Leigh Rohde conducted a survey of
New Hampshire preschool teachers
about their beliefs and practices related
to emergent literacy, particularly when
working with children with speech and
language disabilities. Leigh’s degree is
in education from UNH.
Tobey Partch-Davies produced a study
which examines the systematic impacts
of interagency collaboration between
disability agencies and asset building
agencies affiliated with the National
Real Economic Impact Tour. Tobey’s
degree is in community economic
development from Southern NH
University.
Congratulations, JoAnne, Leigh, and
Tobey!
2
Did You Know?
Federal expenditures for working-age
people with disabilities are shifting
away from employment services to
income support. In comparing fiscal
years 2002 to 2008, an increase of
$357.4 billion dollars in expenditures
reflected a 56.3% increase over
expenditures in the same major
categories in 2002. Programs with
the highest growth since 2002
were Medicare at 104%, SSDI for
workers with disabilities at 71%, and
veterans’ compensation, growing
65%. Expenditures represented nearly
$19,000 per working-age person
with a disability in 2008. In contrast,
expenditures on education and
employment services remain low and
even declined somewhat since 2002.
For more statistics on people with
disabilities in New Hampshire, visit
www.DisabilityCompendium.org,
which is a collaborative effort of
the IOD, Hunter College, and the
American Association of People with
Disabilities.
For over 20 years, Brie Dillon’s presence was
On top of her role as wife, mother, and lawyer,
felt in systems and organizations throughout
Maggie began her career in public service in
New Hampshire. Born with a rare genetic
2000 when Governor Shaheen asked her to serve
disorder, Brie inspired and moved many people
as an advocate on the Advisory
onto a path of meaningful and
Committee to the Adequacy
effective leadership as she
“Maggie has a passion
in Education and Finance
strived for a full life and real
for equality and for
community participation. Brie
everyone to participate... Commission. This experience
served as the catalyst for her
passed away in May 2010. This
she is one of the most
getting more deeply involved in
award, inspired by Brie, is to be passionate people I’ve
politics, which led to her decision
presented to an individual who
ever met.”
to run for the New Hampshire
has shown creative leadership in,
Senate. Maggie was elected in 2004, serving
and commitment to, the full participation of all
a total of three terms. She was instrumental in
people in the political and cultural life of New
Hampshire. This year’s recipient is former New pushing several disability-related bills through
the Senate, including legislation for the state
Hampshire Senator Maggie Hassan.
services wait list, in-home supports, and
“I am so honored to receive the first Brianna
Connor’s law. During her last term in office, she
Dillon Leadership Medal,” said Maggie. “Brie
served as Senate Majority Leader.
and her family paved the way for many of us
by demonstrating that gently insistent advocacy “Maggie has a passion for equality and for
everyone to participate—people who are poor,
can warm hearts and change minds—and make
have disabilities, or are just marginalized in
progress.”
some way,” said Beth Dixon. “She is one of the
Maggie participated in the 1991 NH Leadership
most passionate people I’ve ever met.”
Series soon after her son Ben was born with
Congratulations, Maggie!
cerebral palsy. Maggie was unsure at the time
how she could balance her family life and a
successful corporate law career.
Highlighting IOD Donors
Melanie Muns, NH Leadership Series ’03
Hampton, NH
Melanie Muns participated in the IOD’s NH
Leadership Series in 2002-2003. In the years
since she has served as a key leader, coorganizer of a Seacoast family support group, a
consistent financial supporter of the program,
and a loving parent who is involved in the
disability community.
V&V: You’ve commented that Leadership
changed your life.
Melanie Muns: Prior to Leadership I felt
very much alone. I don’t feel that way anymore!
Having a son with a disability, it is imperative to
arm yourself with information to best advocate
for your loved one—and yourself. Leadership
not only provides an incredible support system,
but also arms its participants with an education
about where progress is being made and where
we need to go to improve the lives of everyone
in our society. My son is about to graduate from
high school. Now more than ever, I think the
job of informing others of the potential of those
with disabilities is so important.
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.
V&V: What were some of the key things you
and your family learned from Leadership?
Melanie: I think the most important single
thing was that going to college was possible!
Leadership always reminds you that no one
knows your child better than you. I always
knew that my son, with the right supports,
would be able to attend college. I had to engage
in “educating the educators” at times to get
everyone in his high school on board. That and
my son proving to himself that he deserved to
go to college through hard work.
Share the IOD with a friend:
V&V: What areas might you encourage
current Leadership grads to get involved in?
Feedback
Please let friends or colleagues
know about us. Pass us along!
“After her time in Leadership, I remember
Maggie saying that Leadership allowed her to
dream again,” said Beth Dixon, NH Leadership
Series coordinator. “She realized you don’t have
to give up one life for another, and with the
proper supports, you can accomplish anything.”
Melanie: In
a word, politics!
Having a
legislature that
understands
the needs of all
Melanie and her
family
citizens and will
in Washington, D
C
provide for the
appropriate services in the budget will only
happen if you vote for them. It will also happen
only if you help get them elected. Many people
don’t really know what goes on at the state
house and how it affects their everyday lives—
until their services have been cut. We all have to
put in many volunteer hours to get those elected
that we think will best look out for everyone.
V&V: You’ve made giving back to Leadership
a priority and consistently give at the highest
level.
Melanie: The continued advancement
of those with disabilities in education and
employment, and their greater inclusion as
members of the community, is imperative!
Sustaining the Leadership program is necessary
if this is going to happen. Ensuring that
Leadership survives and thrives has been a top
priority for me. My entire family has benefited
from Leadership.
To learn more about making a tax-deductible
gift to the IOD, please contact:
Mary Schuh, Ph.D. – Associate Director of
Consumer Affairs and Development
Institute on Disability / UCED
56 Old Suncook Road, Suite 2
Concord, NH 03301
603.228.2084 | mary.schuh@unh.edu
or visit www.iod.unh.edu for easy and secure
online donation.
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 life planning.
Dates & Location:
May 26, 27 and June 2, 3, & 6, 2011 –
University of New Hampshire, New
Hampshire Hall & Browne Center,
Durham, NH
Time: 9am–4pm
Cost: $650
Presenters: Patty Cotton, M.Ed. & Pam
McPhee, MSW
*$50 per person discounts available for
groups of three (3) or more.
*UNH course credit available; register
through the UNH Registrar’s Office
(603.862.1500). Course Name: KIN
798/898.08 – Exp./ Person-Centered
Planning
DCYF/DJJS 18th Annual Conference
Engaging Family Voice: Discovering
Solutions Together
Held annually to recognize and
celebrate the excellent work of public
and private child welfare professionals
and community members and to
provide an intensive learning forum to
share best practices in child welfare in
order to enhance service quality.
Date & Location: June 3, 2011 –
Center of NH Radisson, Manchester, NH
Time: 8:30am–4:30pm
Cost: DCYF staff, DJJS staff, IV-E intern, or
Collaborating Birth Parent – No charge;
Foster parent, Adoptive parent, Court
Appointed Special Advocate (CASA)
volunteer, CCR&R Staff, or UNH student –
$75; Other professionals – $125
Keynote Presenter: Charles Appelstein
Creating a Dementia-Friendly Home
Training on how environmental
factors can affect individuals with
dementia, along with simple, low-cost
modifications for most households.
Date & Location: June 10, 2011 –
Horseshoe Pond Place, Concord, NH
Time: 9am–4:30pm
Cost: $75
Presenters: Cathy Creapaux & Janet
Dineen
13th Annual
au tism sum m er i n sti tu te
Everybody Reads, Everybody Writes,
Everybody Has Something to Say.
This integrated literacy and communication theme
recognizes that far too many students and adults with autism
have not been provided with high-quality literacy instruction
or with a means to communicate if their spoken voice is not
effective. Keynote presenters include Drew Goldsmith, Nick
Holzthum, & Taylor Brown, I am Norm student advocates;
Christi Kasa, Ph.D., University of Colorado; Paula Kluth, Ph.D.,
consultant, author, & advocate; Scott Michael Robertson,
Autistic Self-Advocacy Network; DJ Savarese, student & selfadvocate; Donna Williams, author, artist, & self-advocate; and
Therese Willkomm, Ph.D., ATP, University of New Hampshire.
Advanced Solutions to Hoarding
Advanced-level workshop provides a
detailed look at facilitating effective
communication with individuals who
hoard. Prerequisite: attendance at
“Getting a Handle on Hoarding” or other
Level 1 hoarding training.
Date & Location: June 13, 2011 –
IOD Professional Development Center,
Concord, NH
Time: 9am–2pm
Cost: $95
Presenter: Elizabeth Burden, LICSW, MPH
Going for Guardianship
Information and tools necessary to
guide and assist families through the
entire process of obtaining guardianship
of older adults.
Date & Location: July 14, 2011 –
Highlander Inn & Conference Center,
Manchester, NH
Time: 9am–3pm
Cost: $30
Presenter: Mary McGuire, Esq.
Sixth Annual APEX
Summer Leadership Institute
Teamwork, Leadership, & Data-Based Decision-Making:
Implementing PBIS to Prepare Every Student for Adult Life
The APEX Summer Leadership Institute is designed to build
skills and knowledge for middle and high school teams
who have been or are interested in implementing Positive
Behavioral Interventions and Supports (PBIS) in order to
improve their school’s culture and climate and produce
higher graduation rates for all students. Keynote presenters
include Tim Lewis, Ph.D., Hank Bohanon, Ph.D., Steve
Goodman, Ph.D., JoAnne M. Malloy, Ph.D., Howard Muscott,
Ed.D., and Dan Habib.
Dates: August 17-18, 2011
Dates: August 8-10, 2011
Time: W – 8:00am to 4:15pm, 6pm dinner
Th – 7:30 breakfast, 8:30am to 2:00pm
Time: 8:45am – 5:00pm, registration begins at 8am
Evening activities begin at 7:00pm
Location: Attitash Grand Summit Hotel & Conference Center
Bartlett, NH | Phone: 603.374.1900 | attitash.com
Location: Crowne Plaza Hotel, 2 Somerset Pkwy, Nashua, NH
Phone: 1.800.962.7482 | www.cpnashua.com
Registration Fees:
Registration Fees:
• Early Bird Conference Rate: $275*
*Available through July 1, 2011
• Professional: $399
• Regular Conference Rate: $299
• Students/Parents/Self-Advocates: $349
• Dinner on 8/17: $35 (additional)
• Single Day Registration: $150
All registration fees include continental breakfast, lunch,
materials on a USB flash drive, technology exploration &
communication consultation lab access, parking, WiFi, and
evening activities.
Registration fee includes breakfast and lunch on 8/17 and
8/18. Does not include accommodations—all conference
participants please call Attitash for reservations. Hotel
rooms have been blocked and are available until July 18,
2011.
For more information and to register, visit www.iod.unh.edu or call 603.228.2084
3
IOD Leadership
Charles E. Drum, MPA, JD, Ph.D. – Director
Linda Bimbo, MS – Deputy Director
Susan Fox, M.Ed., MA – Clinical Assistant Professor
Matthew Gianino, BA – Associate Director,
Communications & Technology
Andrew Houtenville, Ph.D. – Research Director
Betsy Humphreys, M.Ed. – NH-LEND Training
Director
Monica McClain, Ph.D. – Project Manager
Mary C. Schuh, Ph.D. – Associate Director,
Consumer Affairs & Development
Executive Committee
Carol Stamatakis – Acting 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.chhs.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
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
Consumer Advisory Council
Kathy Bates – Somersworth, NH
Regina Bringolf – Hancock, NH
Robin Carlson – Laconia, NH
Joyce Chisholm – Concord, NH
Gina Colantuoni – Bow, NH
Susan Covert – Contoocook, NH
Jeff Dickenson – Concord, NH
Bonnie Dunham – Concord, NH
Nathan Gams – Hampton, NH
Amy Howe – Hopkinton, NH
Sandy Hicks – Manchester, NH
Dan Louney – Bedford, NH
Kirsten Murphy – Hanover, NH
Julie Noel – Concord, NH
Mary Schuh – Concord, NH
Chrissy Shaffer – Litchfield, NH
Julie Smith – Durham, NH
Jim Tobin – Effingham, NH
Maureen Tracey – Merrimack, NH
Pat Vincent-Piet – Concord, NH
Kathryn Wallenstein – Concord, 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
Annual Lecture Series Features Lost in Laconia
In mid-April, the IOD and UNH welcomed
Gordon Dubois, director of Community Support
Network, Inc., and five other guest speakers to
present the documentary film Lost in Laconia
as the 2011 selection for the Janet Krumm
Disability & Media Lecture Series.
The afternoon screening was followed by a
question and answer session with Mr. Dubois;
Kathy Bates, a writer, advocate, teacher, and
disability consultant; Beth Dixon, coordinator
of the IOD’s NH Leadership Series and parent;
Rheal LaForest, former resident of Laconia State
School (LSS) who now lives independently
in Nashua, NH; Freda Smith, former state
representative, advocate, and parent; and Bill
Stump, former LSS employee and long-time
friend of Rheal LaForest.
Lost in Laconia traces the history of Laconia
State School from its initial beginnings as the
New Hampshire School for the Feebleminded in
the early 1900s until its closure in 1991. Using
archival footage and current interviews with
former residents of the institution, families of
former residents, and people who worked at the
institution—along with an extensive collection
of photos, newspaper articles, and state
documents—this documentary examines the
social values and cultural ideals of the twentieth
century, relative to individuals and families
who were labeled “feebleminded,” deficient, or
disabled in New Hampshire.
“Lost in Laconia is intended to not only provide
an historical account of the institution, but
more importantly, to promote a public dialogue
The guest speake
rs introduce them
selves
at the 2011 Krum
m Lecture
about our social responsibilities toward its most
vulnerable citizens,” said Gordon Dubois. “It
is critical that this dialogue examine the social
values and cultural ideals of twentieth century
society. It is equally important to use this as
a platform for discussion of social policy and
practice in the twenty-first century.”
The Janet Krumm Disability & Media Lecture
Series is an annual public lecture series which
recognizes the power of information and the
contributions of individuals who have used
the media, written and visual, to create an
understanding of the experience of disability, as
well as the community’s collective responsibility
to embrace diversity. The Lecture Series honors
the efforts of Janet M. Krumm, founder and
editor of the New Hampshire Challenge, a
quarterly news publication for families who
have members with disabilities. Janet passed
away in June 2008.
For more information the Krumm Lecture
Series, visit www.iod.unh.edu.
Beth Dixon Receives UNH Staff Excellence Award
IOD staff member Beth Dixon was recently
honored with the 2011 Presidential Award of
Excellence, an award given annually to five staff
members who have demonstrated excellence
through outstanding performance in their
positions and a record of dedication to, and a
concern for, the University community.
Throughout the past 20 plus years of Beth’s
tenure at the IOD, she has been responsible
for growing a cornerstone program of the
organization, the NH Leadership Series. As a
result of Beth’s leadership and organizational
talents, almost 800 individuals with disabilities,
their families, and graduate students have been
trained in evidence-based practices to improve
the lives of individuals with disabilities, their
families, and their communities.
As the parent of four children, including a son
who experiences significant disabilities, Beth
was a participant in the IOD’s first Leadership
Series in 1988. Since then, Beth has grown the
Series from three two-day sessions to a sevenmonth experience eligible for nine college
credits. Series graduates have gone on to
become state legislators, school and community
board members, filmmakers, agency heads,
and many other leaders and incubators of
positive change in policy and practice related to
supporting individuals
with disabilities and
their families. While
coordinating the
Leadership Series,
Beth has embedded
herself within the
UNH community.
She is a wellrespected guest
lecturer in many
Beth and UNH Pr
classes within the
esident
M
ark Huddleston
education and health
and human services
departments and she supports undergraduate and
graduate students to learn more about the value
of including individuals with disabilities.
“Beth Dixon’s involvement in UNH disabilityfocused courses represents a wonderful example
of how UNH can and should be engaged with
NH citizens in fulfilling the university’s mission
and making a positive impact on the lives of
people in our state,” said Cheryl Jorgensen,
former IOD staff and University faculty member
in education.
Congratulations, Beth!
Mail
56 Old Suncook Road, Suite 2
Concord, NH 03301
Phone
603.228.2084
An IOD staff member will assist
you with the process and
answer any questions you may
have about your contribution.
Stay Connected
For the latest IOD news, follow the Institute on Disability on Facebook and Twitter:
www.facebook.com/instituteondisability
www.twitter.com/unhiod