september - november 2007
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What’s Inside
Community Organization of the Year Award . .2
Under One Roof . . . . . . . . . . . . . . . . . . . . . . . . 2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . . 3
NH Leadership Series Class of ’07. . . . . . . . . . . 4
Marian West Retires . . . . . . . . . . . . . . . . . . . . . 4
The cause of people with disabilities took center
stage on Monday, July 30th when Massachusetts
Mutual Life Insurance Company (MassMutual),
in cooperation with Exceptional Parent
Magazine and Red Sox minor league baseball
team the Lowell Spinners, sponsored Disability
Awareness Night at LeLacheur Park in Lowell,
MA.
Disability Awareness Night honored the
contributions of 54 million Americans with
disabilities, their families, and caregivers.
Among them was the IOD’s own Janet
Williamson, who received the EP Maxwell J.
Schleifer Distinguished Service Award from
MassMutual’s Terry McMahon at a pre-game
ceremony at home plate.
Janet was among the first class to graduate from
the IOD’s NH Leadership Series, a program
which supports self-advocacy and leadership
skills for individuals with disabilities and their
family members who wish to affect change at
a personal, community, and statewide level to
support the full inclusion of individuals with
disabilities in their schools and communities.
“It was there that I developed many of my
advocacy skills and learned how to dream again
for Jeff,” said Janet during her brief remarks that
evening.
Janet being acknowledge
d at the pre-game
ceremony
One of her most remarkable accomplishments
came in the late 1980’s when she won a NH
Supreme Court Case allowing her son Jeff to
attend classes at Manchester West High School
in New Hampshire.
Along with Janet’s work with Innovation
Facilitators (a network of trainers and
facilitators in person-centered planning) and the
NH Leadership Series at the IOD, she currently
serves on the Board of Directors at both the
Future Planning Networks of New Hampshire,
a non-profit organization which helps families
plan for “a safe and secure future for their
loved one with a disability,” and SmartCare, an
organization which provides in-home care for
the elderly and individuals who use wheelchairs.
Home of Your Own:
Living the American Dream
For years while Lori Fox rented an apartment
in Concord, NH, her family lived in fear that
Lori might one day be evicted because of her
developmental disability, her mental health
issues, and her need for around-the-clock
support. But thanks to the Home of Your
Own project, Lori will never have to face that
possibility again.
Last summer, Lori became the 79th person in
the state of New Hampshire to purchase a home
through the Home of Your Own project, a joint
effort by the IOD and the Center for Housing
and New Community Economics (CHANCE) to
help people with disabilities purchase affordable
housing. By working with NH Housing,
Concord Area Trust for Community Housing
(CATCH), Community Bridges, the Bureau of
Lori Fox outside her condo
in Concord, NH
Developmental Disabilities, and the Community
Loan Fund, the IOD and CHANCE are able
to work out the details of mortgages, down
payments, closing costs, and other fees in order
to make home ownership feasible for people
with disabilities. Thanks to this collaborative
effort, Lori is living independently in her firstfloor condo in downtown Concord, just blocks
from her services and favorite activities.
“We had known about the Home of Your Own
project since it started at the IOD,” said Sue
Fox, Lori’s mother and IOD employee, “but
we didn’t think about it for Lori until last
year. Now, she’s living the American dream of
owning her own home—an opportunity that
isn’t given to many people with disabilities.”
INSTITUTE ON DISABILITY / UCED
10 WEST EDGE DRIVE
SUITE 101
DURHAM NH 03824
Little Ones Have Big Dreams Too:
A Guide for Facilitators by Ann
Donoghue Dillon
In planning for your
child’s future, are
you looking for an
innovative, informal,
community engagement
approach to change
as opposed to a more
system-directed,
formalized, and
regulated approach?
This book outlines the basic
facilitation techniques necessary
for working through the personcentered planning process for
children and youth in their early
teens. The maps and illustrations
will help the planning group to
define its purpose, illustrate the
child’s history, and include others in
planning, establishing a vision, and
delineating realistic outcomes and
action steps. Little Ones Have Big
Dreams Too is available for $10 at
800315
Bookstore Spotlight
Janet Williamson Honored
as EP’s “Parent of the Year”
For more information on the Home of Your
Own project, visit the CHANCE website at
chance.unh.edu.
Under One Roof
For some individuals who
experience developmental
disabilities, it takes
connections and a
friendly hand to fully
participate in their
communities. The Under
One Roof Project, an IOD-collaborative
project in the Monadnock Region of
New Hampshire, addresses the full
participation of people with disabilities
and their families by connecting them
with local family support, recreation, and
employment so that they can develop
relationships in the same manner as other
community members.
Under One Roof recently launched the
Recreation ALLIES Network, an exciting
initiative which pairs high school students
with peers who experience a disability
for the sake of recreational support and
relationship building.
Visit www.recreationallies.com to
learn more about the Network and how
individuals are staying connected in their
communities.
For more information on the
Under One Roof Project, contact
Molly Hajjar at 603-562-7196
or visit www.underoneroofproject.org.
2
Did You Know?
Fifteen percent (approximately 47,000)
of New Hampshire’s children have
some form of special health care need.
Of these:
• One in seven have 11 or more days
of school absences due to illness
• One in five:
- Needed but did not get all
respite care, genetic counseling
and/or mental health services
- Had problems getting a referral
• One in four:
- Have health conditions which
consistently and often greatly
affect their daily activities
- Do not have adequate health
care coverage
- Do not have access to family centered care
- Have health care needs which
caused family members to cut
back or stop working
Data Source: 2001 National Survey
of Children with Special Health Care
Needs - Results for New Hampshire
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!
Enhancing Services for
Individuals with Genetic Disorders
Since newborn screening for genetic disorders
like cystic fibrosis and sickle cell disease has
become a standard public health practice,
more and more genetic diagnoses are being
addressed early in life. In view of this, the IOD,
in partnership with the New Hampshire Institute
for Health Policy and Practice at the University
of New Hampshire and the DartmouthHitchcock Medical Center Department of
Pediatrics, Division of Medical Genetics,
intends to enhance the services and supports for
individuals with genetic disorders through a new
grant.
The New England Regional Genetics and
Newborn Screening Collaborative (New
England RC) cooperative agreement, awarded
by the U.S. Department of Health and Human
Services on June 1, 2007, will address the
needs of individuals, agencies, and health care
providers who interact with and treat individuals
with genetic disorders and their families.
The $4 million cooperative agreement, to be
received over five years, will provide technical
assistance, accessible information, educational
opportunities, and other support for public
health officials, consumers, advocates, primary
and specialty health care providers, and other
agencies and individuals who support those with
genetic disorders throughout the New England
region.
The primary goal of the New England RC is to
assure that individuals with genetic disorders
and their families have access to quality care,
appropriate genetics expertise, and information
that provides accessible, family-centered,
continuous, comprehensive, coordinated,
compassionate, and culturally effective care.
For more information, contact Project
Coordinator Amy Philbrick Schwartz at
(603)862-5099 or amy.schwartz@unh.edu.
Highlighting IOD Donors
Gifts from individual supporters, local
companies, and private foundations all help to
ensure that IOD programs are sustainable and
serve as many people as possible.
school dropout and promote better school
environments for all students–continue to reach
students, educators, and parents in need in these
communities.
Corporate Sponsors
Each year, we invite area businesses to
participate in the NH Leadership Series as
corporate sponsors. Sponsors receive visibility
throughout the year at Series sessions held
in locations across the state, and through the
Leadership newsletter and listserv. Their support
is recognized by families and Series graduates
from every corner of New Hampshire. In ’06’07, sponsors included the New Hampshire
Bar Foundation, Mascoma Savings Bank
Foundation, TD Banknorth Charitable
Foundation, All-Ways Accessible, RideAway Handicap Equipment Corporation,
Anthem Blue Cross/Blue Shield, and McIntire
Business Products.
Building a Better Understanding of Autism
A $5,000 grant from the TJX Foundation, Inc.
is helping to further the work of the IOD’s New
Hampshire Resource Center on Autism Spectrum
Disorders, where some of the nation’s leading
experts in the fields of developmental pediatrics,
clinical psychology, and audiology are
advancing what we know about autism spectrum
disorders (ASD) and how we provide support
for individuals with ASD and their families. For
more information about the Resource Center,
visit www.iod.unh.edu/autism.html.
Model Programs Serving At-Risk Youth
The Fuller Foundation recently awarded
a $6,000 grant in support of services for atrisk youth with disabilities in the Seacoast
region. These funds will help to ensure that the
IOD’s model programs–which help to prevent
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
IOD Named “Community
Organization of the Year”
The IOD’s New Hampshire Leadership Series
was recently honored by the University
of New Hampshire (UNH) Community
Leadership Celebration as the 2007 Community
Organization of the Year.
In order to be eligible for this award, the
organization being nominated must have
collaborated with UNH to foster leadership and
improve civic life in New Hampshire’s Seacoast
Region. Examples of such collaboration could
include activities like student internships,
Cooperative Extension volunteer work, research
collaborations, and professional development
partnerships.
“The NH Leadership Series has had over
650 graduates who have returned to their
communities to work toward creating better
futures for their children, for themselves, and
for those that cannot do it alone,” read the
nomination. “The IOD and its Leadership
graduates have created programs for training
parents about their children’s rights to an
Beth Dixon (left) receives the
award from
Kate Hanson, Associate Pro
fessor at the
Thompson School at UNH
education, transportation availability and
accessibility, and inclusion in the classroom (and
beyond), to name a few.”
Though the official awards presentation took
place on the evening of April 12, 2007, the
IOD was recognized two evenings later at the
2007 NH Leadership Series graduation. “It was
a great honor to receive the award that night,”
said Beth Dixon, director of the NH Leadership
Series, “and it really helped our graduates see
their connection to the University.”
For more information on the NH Leadership
Series, visit www.nhleadership.org.
The Autism Mini-Series: 2007 Dates
Join experts on Autism Spectrum
Disorders (ASD) for topical discussions
related to children with ASD, their
families, and the systems of support in
their lives. Each small group session is
designed to be informative, interactive,
and filled with practical ideas to embed
within your own parenting and teaching
strategies.
Location: University of NH, Durham, NH
Cost: $30 each
Dates & Topics:
Wednesday, September 19, 2007:
Challenging Behaviors at Home and
School for Toddlers and Preschoolers
Time: 3pm – 5pm
Presenter: Ann Dillon, M.Ed.
Wednesday, October 17, 2007:
Person-Centered Planning for Young
Children with ASD
Time: 3pm – 5pm
Presenter: Ann Dillon, M.Ed.
Tuesday, October 23, 2007:
Promoting Membership, Participation,
and Learning for Students with ASD in the
General Education Classroom
Time: 4pm – 6pm
Presenters: Michael McSheehan &
Cheryl M. Jorgensen, Ph.D.
Wednesday, November 14, 2007:
Early Markers for Children with ASD
Time: 3pm – 5pm
Presenter: Ann Dillon, M.Ed.
Getting a Handle on Hoarding:
Effective Interventions to Help
Individuals Who Hoard Stay in their
Own Homes
Hoarding presents difficult and complex
situations for providers. Individuals
who hoard are frequently at risk for
losing their housing due to eviction.
This interactive workshop will describe
clinical disorders and cognitive features
associated with hoarding and recent
research findings.
Date & Location:
Wednesday, September 19, 2007:
The Fireside Inn, Lebanon, NH
Time: 8:30am – 12pm
Cost: $10
Presenter: Elizabeth Burden, LICSW, MPH
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Response to Intervention and Beyond
with 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 about Positive Behavioral
Interventions and Supports (PBIS),
Response to Intervention (RTI), and the
School-wide Applications Model (SAM).
Date & Location:
Thursday, September 20, 2007:
The Highlander Inn, Manchester, NH
Time: 8:30am – 2:30pm
Cost: $99
Presenter: Dr. Wayne Sailor
Life as a Paraprofessional
Comprehensive full-day workshops
designed specifically for first-year or
seasoned classroom Paraprofessionals
to present strategies for supporting
students with challenging behavior Level
I: Pre & Elementary School Dates &
Locations:
Tuesday, October 9, 2007:
E.F. Lane, Keene, NH
Thursday, October 11, 2007:
The Highlander Inn, Manchester, NH
Thursday, December 6, 2007:
The Highlander Inn, Manchester, NH
Level II: Middle & High School
Dates & Locations:
Tuesday, November 6, 2007:
Holiday Inn, Concord, NH
Thursday, November 8, 2007:
E.F. Lane, Keene, NH
Time: 9am – 3pm
Cost: $90
Presenter: Cathy Apfel, M.Ed.
Making Choice Real: Transforming
Long Term Systems of Support
One day conference outlining NH’s
efforts to expand and enhance a
person-centered system for older adults
and adults with disabilities.
Date & Location:
Wednesday, October 24, 2007:
Radisson Hotel, Center of NH,
Manchester, NH
Time: 8:30am – 3:30pm
Cost: $50 (professionals); $25
(consumers & families)
Presenters: Nancy Rollins, Director,
Division of Community Based Care
Services, NH Dept. of Health & Human
Services; Nicholas Toumpas, Acting
Commissioner, NH Dept. of Health &
Human Services; Lisa Alecxih, Vice
President, The Lewin Group
Building Bridges to the Social World:
Strategies for Developing Social
Competence and Connections for
Children with Autism
For children with labels of ASD,
understanding and participating in
social interactions can be difficult and
frustrating. CarolAnn Edscorn, an adult
with Asperger’s Syndrome, and Cathy
Apfel, M.Ed., team up to offer personal
insights and strategies for developing
social awareness and competence.
Date & Location:
Thursday, October 25, 2007:
The Common Man, Plymouth, NH
Time: 8:30am – 3pm
Cost: $99
Presenters: CarolAnn Edscorn &
Cathy Apfel, M.Ed.
Voices of Friendship: How Schools Can
Help or Hinder the Development of
Social Relationships
Will help participants learn to identify
the barriers to friendship that exist in
many schools and classes, as well the
wide variety of strategies that schools
and families can use to facilitate the
development of friendships.
Date & Location:
Monday, October 29, 2007:
The Common Man, Concord, NH
Time: 8:30am – 3pm
Cost: $90
Presenter: Carol Tashie
Save the Dates
Strategies for Success Mini-Series
Two-hour sessions to explore academic
and social success strategies for
students with disabilities.
Dates: 10/16/07, 10/30/07, 11/13/07,
11/14/07, 12/6/07, and 12/13/07
Autism Research to Practice Series
Workshops focused on evidencedbased interventions that support
individuals with autism.
Dates & Guest Presenters:
11/2/07 - Amy Laurent, M.Ed., OTR/L
2/13/08 - Gail G. McGee, Ph.D.
4/11/08 - Scott Bellini, Ph.D.
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
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
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
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
4
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
Kathy Bates - Somersworth, NH
Regina Bringolf - Hancock. NH
Stacey Brooks - 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
Dan Louney - Bedford, NH
Debra Nelson - Concord, NH
Stacy Shannon - Concord, NH
Jim Tobin - Effingham, NH
Pat Vincent-Piet - Manchester, 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.
NH Leadership Series Class of ‘07
This year’s NH Leadership Series provided
leadership training to 35 parents of individuals
with disabilities, adults with disabilities,
and New Hampshire Leadership in
Neurodevelopmental Disabilities (NH-LEND)
trainees from September 2006 through April
2007. Participants learned about the history
of the disability movement in NH, creating a
vision for themselves and their family members,
best practices in the field, negotiation skills,
community organizing strategies, using the
media to affect change, and understanding
The 2007 Leadership Serie
and utilizing the legislative process to achieve
s graduates with
several IOD staff.
change.
At the graduation ceremony in April, participants acquired through Leadership,” said Michelle
were asked to define their commitment to Jarvis, President of the NH Autism Society and
using their skills and lessons
2007 Leadership graduate.
learned at Leadership. Among
“Beyond my current
Graduates of the NH
the action group presentations Leadership Series are eligible endeavors, I cannot say
and outcomes were “A Menu for 9 undergraduate credits
what my future holds. I do
for Success - Recreation for from Granite State College.
believe, however, that my
All,” a “cookbook” of strategies
opinionated assertiveness
related to accessible recreation The Community Service and will be tempered with
opportunities, a review of the Leadership program will waive growing wisdom and
Individuals with Disabilities
thoughtful judgment; I will
12 credits for Leadership
Education Act and development
always question others and,
graduates who enter their
of recommendations for NH’s
just as importantly, myself;
certificate program at UNH
state rules and implementation,
I will evolve - but not
and UNH-Manchester.
and “Environmental Hazards and
conform; and I will be as
Their Impact on your Family,” a website which is hungry for knowledge as I am for power.”
accessible through the Leadership website.
For more information on the NH Leadership
“I know that in my new position I will readily
Series, visit www.nhleadership.org.
draw upon the knowledge and skills that I have
After Nine Years at the
IOD, Marian West Retires
To some, Marian West is the friendly face at
the front desk of the IOD’s Concord office,
answering phones and greeting guests. But for
so many, Marian has been someone who has
left a lasting impression.
Some know Marian as a teacher, having heard
her speak about her life experiences in classes
at the University of New Hampshire or at the
NH Leadership Series. “Students in my classes
thought she was the best part of the semester,”
Marian with IOD Director Ja
said IOD Director Jan Nisbet. “She’s had a
n Nisbet at
Marian’s retirement party
huge impact on people, and that’s a gift.”
Others know her as a dedicated worker. “Janet
Williamson once told me, ‘Never do one job
without finishing it,’” said Marian. “I took that
seriously. I’ll miss people bringing me work to
do.”
For the majority of people who know Marian,
however, she is a friend: someone to talk to, to
laugh with, to share concerns with, and to lean
on. “We talked every day,” said Alison O’Neill,
Marian’s supervisor for several years. “She
has been my support system, probably the best
support system I’ve ever had.”
“My friendship with Marian has been one of
the great surprises in life,” said IOD employee
Patty Cotton during her remarks at Marian’s
retirement party. “She brings a passion to
absolutely everything she does.”
Marian plans to continue her involvement
with the IOD by participating in the Consumer
Advisory Council, as well as visiting classes and
the NH Leadership Series. Marian also hopes
to remain an active citizen, vowing to “keep
her ticker going” with regular exercise and
interaction with her friends.
Someone once said “Some people come into
our lives and quickly go. Some stay for a while
and leave footprints on our hearts. And we are
never, ever the same.” We thank you, Marian,
for staying a while.
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.