december 2007 - february 2008
www.iodserver.unh.edu/iodbookstore.
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The IOD produces a variety of
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Voice, which communicate the ways
we are connected to individuals and
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What’s Inside
Former NH-LEND Trainee Appointed to DHHS . .2
IOD Giving Circle. . . . . . . . . . . . . . . . . . . . . . . 2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . . 3
“In Trust” by Anne Huff. . . . . . . . . . . . . . . . . . . . 4
Friends Foster Grandparent Program . . . . . . . 4
In the early 1980s, the state of New Hampshire
was faced with a crisis about the service it
was providing for people with disabilities. The
state issued a challenge to the University of
New Hampshire: could it establish a center that
would be a source of innovation in the field of
disability, a model for the best practices, and an
advocate for change? In 1987, UNH hired Dr.
Jan Nisbet, then a professor of rehabilitation
and disability policy at Syracuse University, to
run the newly-founded Institute on Disability.
No one could have predicted that a short twenty
years later, New Hampshire would become a
leader in the field of disability services.
Starting with a budget of $120,000 and a staff of
three, Jan has helped the IOD to grow to a staff
of over 40 employees, paid for by 24 grants and
$4.3 million in external funding. The IOD has
been a part of many notable projects, including
the establishment of the Center for Community
Economic Development and Disability at
Southern New Hampshire University, and the
creation of HomePartners, a mortgage loan
program developed in collaboration with Fannie
Mae which targets the needs of borrowers with
disabilities. The IOD was formally affiliated
with the Association of University Centers on
Disabilities in 1991. Today, the IOD’s projects
span an immense spectrum, from autism to
inclusive education, from community living for
adults to technology, from health care and public
policy to leadership training.
For Jan’s and the IOD’s continuing drive to
realize a
world where
all people,
including
those with
disabilities,
are fully
engaged
members
IOD Director Jan Nisbet with
of their
self-advocate Annie Forts
communities,
Jan was awarded the Pettee Medal, the UNH
Alumni Association’s most prestigious award
for extraordinary achievement and distinguished
service to the state, the nation, and the world.
Jan is the first female faculty member to receive
this award since it was established in 1940. The
medal recognizes individuals who exhibit the
rare devotion to service expressed by the life of
Charles Holmes Pettee, who served UNH for
62 years as professor and dean until his death in
1938.
Among those invited to speak at the award
ceremony were UNH President Mark
Huddleston, UNH Alumni Association
President Frederick Dey, Executive Director
of the Association of University Centers on
Disabilities George Jesien, self-advocate and
motivational speaker Annie Forts, and former
New Hampshire Governor Jean Shaheen.
For more information on the UNH Alumni
Association and the Pettee Medal, visit
www.alumni.unh.edu.
Presidential Candidates Address Disabilities Forum
On Friday, November 2, 2007, the IOD served
as co-host to Granite State Independent
Living’s 2007 Presidential Candidates’ Forum:
A National Forum on Equality, Opportunity
and Access. Over 600 voters, many of whom
experience some kind of disability, filled the
Armory at Manchester’s Radisson Hotel to listen
to seven presidential candidates outline their
plans to improve support systems for individuals
with disabilities if elected.
The forum was moderated by Ted Kennedy, Jr.,
and featured several guest presenters, including
Andrew Imparato, President & CEO of the
I NSTITUTE ON D ISABILITY / UCED
10 WEST E DGE D RIVE
S UITE 101
D URHAM NH 03824
The 2008 IOD Calendar
The IOD welcomes
2008 with its annual
outreach calendar,
highlighting New
Hampshire’s dedication
to community,
diversity, and inclusion.
Along with original
artwork created by individuals
who are connected to our mission,
each month features projects and
organizations that seek to increase
inclusive community supports for
people with disabilities and their
families. The IOD would like to
thank all those who helped make this
calendar possible, particularly those
artists who generously contributed
their visions for social equality, as
well as extend our deepest gratitude
to all of our sponsors, both returning
and new. We hope you enjoy
the New Year and thank you for
celebrating it with us. The 2008 IOD
Calendar is available for $10 at
800315
Bookstore Spotlight
Jan Nisbet Receives UNH Alumni
Association’s Highest Honor
American Association of People with (AAPD),
civil rights activist Keith Jones, and NH State
Senator Lou D’Allesandro. The day-long forum
allotted each candidate 30 minutes to present
his or her vision for the future of national
disability policy that will promote equality
and opportunity for people with disabilities.
Candidates were asked to address issues
concerning employment, health care, long-term
community-based supports, transportation,
and others. The forum also incorporated the
opportunity for those in attendance to ask direct
questions of the candidates on how they would
work toward bridging the equality gap that
exists between their access to opportunities
compared to those without a disability.
Although the event was not broadcast on
television, interested individuals could access
a live webcast of the forum. Of the twelve
candidates invited, only Senator Joe Biden,
Senator Hillary Clinton, Senator Chris Dodd,
Senator John Edwards, Senator Mike Gravel,
Congressman Dennis Kucinich, and Senator
John McCain committed to participating.
For more information on Granite State
Independent Living, visit www.gsil.org.
IOD Giving Circle
A giving circle is, in general terms,
a group of donors who place their
charitable dollars into a pooled fund,
and decide as a group which charities
to support. Giving circle donors often
commit to participation for several years
at an established dollar level, and the
funds are typically donated to non-profits
chosen by the entire group.
In response to gifts received from other
giving circles like the Gone Giving
Group, the IOD began to research giving
circles and in January 2007 started its
own Giving Circle.
The mission of the IOD’s Giving
Circle is to raise money and distribute
contributions to projects that improve
life for individuals with disabilities and
their families in New Hampshire. The
IOD’s Giving Circle fulfills its mission
by gathering contributions monthly,
educating its members about the power
of collective philanthropy, broadening
awareness of issues affecting individuals
with disabilities and their families in
New Hampshire, and identifying and
supporting non-profit organizations that
offer programs to support individuals
with disabilities and their families.
For more information on the IOD
Giving Circle, call 603.228.2084.
2
Did You Know?
In NH, 65% of students with
disabilities in 2006 were included in
the general education setting more than
80% of the time. In this respect, NH
ranks ninth in the nation for having the
most children with disabilities included
a majority of the time in the classroom.
Of note, there is limited variation based
on the type of disability that a child
has. The following list shows the type
of disability alongside the percentage
of children in that population who were
included at least 80% of the time:
• Specific learning (68.7%)
• Speech language (61.6%)
• Mental retardation (48.5%)
• Emotional disturbance (58%)
• Multiple disabilities (45.4%)
• Hearing impaired (65.2%)
• Orthopedic (72.2%)
• Other health impairments (68.7%)
• Visual impairments (66.3%)
• Autism (59.5%)
• Developmental delay (60.2%)
Source: www.IDEAdata.org
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!
Former NH-LEND Trainee Appointed to
NH Department of Health & Human Services
The New Hampshire Department of Health
and Human Services recently announced
the appointment of former New Hampshire
Leadership Education in Neurodevelopmental
& Related Disabilities (NH-LEND) trainee
Elizabeth Collins, RN-BC, MS, as the Director
of Special Medical Services for Children with
Special Health Care Needs (NH’s Title V
program). Liz participated in the NH-LEND
program during the 2004-2005 academic
year and received her master’s degree from
the University of New Hampshire in Nursing
Leadership, with a focus on Health Planning and
Advocacy for Special Populations. With more
than 15 years of experience as a New Hampshire
state employee combined with her leadership
training, Liz was the perfect candidate for the
position.
Reflecting on the impact of her experience
with the NH-LEND program, Liz noted that
as a nurse, she had entered the program
with a holistic perspective on working with
individuals. The NH-LEND program provided
an opportunity to actualize this perspective
for children with special health care needs.
Listening to families’ stories, understanding
what services they were receiving and what they
needed, and appreciating that families are the
true champions for their children was critical.
Liz reflected that being a NH-LEND trainee
required her to “set aside some of my
preconceptions and sit back and listen. To
fully participate, I needed to realize that it
Liz credits her success in part to her
training with the NH-LEND progra
m
was not about my past experiences, but about
incorporating what I learned and heard into my
own body of knowledge. Also, being a NHLEND trainee gave me the opportunity to do
things that I might not have otherwise done on
my own. I learned I could get into a wider arena,
speak cogently, and meaningfully.”
Liz advises that current and future trainees
should “ensure that your body of work
within the NH-LEND program be based on
your passions. Take advantage of all of the
opportunities, especially those to explore and
understand policy and politics. As leaders,
we all need this understanding to influence
the direction of the field. Many leaders state
that they are uncomfortable with the title of
‘leader’ and yet we all have the ability to make a
difference. That’s what leadership is!”
For more information on the NH-LEND
program, visit www.mchlend.unh.edu.
Highlighting IOD Donors
Assistive Technology for Leadership
Thanks to a generous $25,000 grant from
The Samuel P. Hunt Foundation, staff and
participants in the NH Leadership Series
will benefit from the acquisition of a suite of
assistive and adaptive technology equipment
to increase accessibility to the program for all.
This includes items such as a Front Row to Go
wireless PA system which enables persons
with hearing impairments to connect to the
system using a hearing device, and JAWS Screen
Reader software, which reads information from
the computer screen aloud and also can output to
Braille displays. Additionally, the grant supports
the purchase of new equipment for the delivery
of the program – from a laptop to easels.
Support for Leadership Educational
Materials
The Frank M. Barnard Foundation has
awarded a $2,000 grant in support of the NH
Leadership Series. Funding will support the
printing and copying of instructional materials
for participants of the Leadership Series, and
maintenance of a lending library for participants
that includes educational books, manuals,
reports, and other reference materials on
disabilities, advocacy, and leadership.
Including Samuel Premiere a Success!
The IOD would like to thank everyone who
attended the premiere of Including Samuel on
Tuesday, November 6, 2007. Because of you,
the evening was an amazing success and just the
beginning for this much needed documentary.
Including Samuel has received major support
from Granite State Independent Living, the
NH Developmental Disabilities Council, the
Endowment for Health, the NH Charitable
Foundation, and Easter Seals NH. Additional
support has come from the NH Disabilities
(L-R) Samuel, Dan, and Isaiah Ha
bib at the
Including Samuel premiere (Photo
by
Laurie Duff)
Rights Center, the NH Trial Lawyers
Association, and the Episcopal Bishop of NH.
A special thank you also goes out to all of the
advertisers for the event, as well as those who
made donations over and above the ticket price.
Making the IOD More Accessible
One of the goals of the IOD’s strategic team is
to make the IOD as accessible as possible to all
people, whether they are visiting the website or
stopping by one of the offices. In response to
an accessibility need demonstrated at the IOD’s
office location in Concord, NH, Pasquale Alosa,
property landlord, donated half of the cost of the
purchase and installation of an accessible door.
“Sal has always been so accommodating,” said
Concord Office Manager Stephanie Bernier.
“All we had to do was ask.” The new door was
installed this past fall. The IOD wishes to thank
Sal for his support of this project.
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
Strategies for Academic Success Series
Educators and families throughout NH
continue to strive for ways to support
all students in achieving academic
success and ultimately becoming
valued members of their communities.
It is our hope that these informative,
thought-provoking, and practical twohour after-school workshops will provide
strategies for creating classrooms where
all children can flourish.
Time: 3:30pm – 5:30pm
Location: UNH Institute on Disability, 56
Old Suncook Road, Suite 2, Concord, NH
Cost: $35 each
Dates & Topics:
Thursday, December 6, 2007:
Including Samuel: Strategies on How
Schools Can Work for All Kids
Presenter: Frank Sgambati, MS
Thursday, December 13, 2007:
Teachers and Paraprofessionals
Working Together: Effective Methods of
Supervision and Support
Presenter: Frank Sgambati, MS
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:
Thursday, December 6, 2007:
Highlander Inn, Manchester, NH
Thursday, January 10, 2008:
Holiday Inn, Concord, NH
Tuesday, February 5, 2008:
Highlander Inn, Manchester, NH
Thursday, March 6, 2008:
Holiday Inn, Concord, NH
Thursday, April 3, 2008:
The Common Man, Plymouth, NH
Thursday, May 1, 2008:
Granite State College, Conway, NH
Level II: Middle & High School
Dates & Locations:
Thursday, February 7, 2008:
Highlander Inn, Manchester, NH
Tuesday, April 8, 2008:
The Common Man, Plymouth, NH
Time: 8:30am – 3pm
Cost: $90
Presenter: Cathy Apfel, M.Ed.
The Autism Mini-Series: 2008 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.
Time: 4pm – 6pm
Location: University of NH, Durham, NH
Cost: $30 each
Dates & Topics:
Monday, January 28, 2008:
Positive Behavior Support:
Re-Thinking the Role of Context
Presenter: Cathy Apfel, M.Ed.
Tuesday, February 5, 2008:
Communication Supports
for Students with ASD
Presenter: Rae Sonnenmeier,
Ph.D., CCC-SLP
Monday, March 17, 2008:
Positive Behavior Support:
Re-Thinking the Role of Context
Presenter: Cathy Apfel, M.Ed.
Tuesday, April 1, 2008:
Communication Supports
for Students with ASD
Presenter: Rae Sonnenmeier,
Ph.D., CCC-SLP
Wednesday, April 9, 2008:
Promoting Membership, Participation,
and Learning for Students with ASD in the
General Education Classroom
Presenters: Michael McSheehan &
Cheryl M. Jorgensen, Ph.D.
2007-2008 Autism
Research to Practice Series
Enriching the Educational Experience for
Students with Autism Spectrum Disorders.
2008 Series Topics & Dates:
Walden Incidental Teaching Model
Wednesday, February 13, 2008:
Holiday Inn, Concord, NH
Time: 8:30am – 3pm
Cost: $125
Presenter: Gail G. McGee, 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 familydirected career, education, and life
planning.
Dates:
Friday, Feburary 22, 2008
Friday, February 29, 2008
Friday, March 7, 2008
Friday, March 14, 2008
Friday, March 21, 2008
Location: All dates at Springfield College,
Manchester, NH, except 3/14 at The
Browne Center, 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.
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:
Wednesday, March 26, 2008:
The Common Man, Plymouth, NH Time:
8:30am – 3pm
Cost: $90
Presenter: Carol Tashie
Building Bridges to the Social World:
Strategies for Developing Social
Competence and Connections
for Children with Autism
Building Social Relationships and Use of For children with labels of ASD,
Video Modeling
understanding and participating in
Friday, April 11, 2008:
social interactions can be difficult and
Derryfield Country Club, Manchester, NH frustrating. CarolAnn Edscorn, an adult
Time: 8:30am – 3pm
with Asperger’s Syndrome, and Cathy
Cost: $125
Apfel, M.Ed., team up to offer personal
Presenter: Scott Bellini, Ph.D.
insights and strategies for developing
social awareness and competence.
Date & Location:
Thursday, April 10, 2008:
Highlander Inn, Manchester, NH
Time: 8:30am – 3pm
Cost: $99
Presenters: CarolAnn Edscorn &
Cathy Apfel, M.Ed.
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
Susan Fox, M.Ed., MA – Clincal 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
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
Joyce Johnson – Concord, 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.
“In Trust,” for our Special Children
by Anne Huff
In 1997, at the age of 12, my daughter
Emily was diagnosed with childhood-onset
schizophrenia. When my husband died in
2000, leaving life insurance money for each
of our children, on the advice of an attorney
I established a Special Needs Trust for her.
Given the uncertainty of the future, it was
reassuring to know there would be funds
available to provide for her “extras.”
When Emily turned 18 and her health coverage
changed, the District DHHS office requested a
list of expenditures from her Trust in the past
year. I was told certain expenditures from the
Trust would be countable as income to Emily.
After attempts to clarify what constituted
“certain expenditures,” we only knew that
payments for education or healthcare would
be exempt. Managing Emily’s illness has
sometimes necessitated relying on the Trust for
expenses, but because I wanted to follow “the
rules,” I became fearful of spending any funds,
regardless of the potential benefit to her. In
accordance with DHHS stipulations, the terms
of the Trust are clear: when Emily is no longer
here, the entire contents of the Trust will go to
the State.
NH Governor John Lynch signs HB
273 into law
At the time, I had no idea that our case would
end up in the NH Supreme Court. It was
intimidating to imagine going against the very
state which provides Emily’s services. At times,
I feared some sort of retribution or that Emily’s
benefits and supports would be in jeopardy. The
single most comforting factor came from being
a graduate of the IOD’s NH Leadership Series
in 2003. The knowledge I gained helped me
to maintain the courage to continue. Equally
sustaining was the life-long bond created with
the other parents who attended, and the respect I
hold for them and their daily challenges.
There is no way to express my gratitude to
the legal community for their assistance, who
selflessly contributed their time and resources,
This seemed in direct conflict with the intent
attended the hearing at the Supreme Court,
of the Trust, and so I decided to appeal the
and testified at the Public Hearing on HB
Department’s decision. I met with an estate
273, sponsored by Rep. Ruth Bleyler (a NH
attorney in Manchester, who explained that this
Leadership Series graduate herself!). As parents,
had been a long-standing issue with Special
we all do our best each day, try to diminish our
Needs Trusts and that our family was not alone
disappointments, and hold on to the fact that
in facing this frustrating situation. Under Federal there will ALWAYS be reasons to celebrate!
law, the expenditures in question would not be
For more information on the NH Leadership
countable income, but there was an exception
Series, visit www.nhleadership.org.
to this in NH. After our lawyers spent countless
hours in research, we agreed to move forward
with the appeal process.
Foster Grandparents Work with Children with Autism
For over twenty years, many older adults in
New Hampshire have found a way to give back
to their communities through the Friends Foster
Grandparent Program. This intergenerational
program’s mission is to connect seniors with
children who are needy or at-risk to derive
benefits for both groups. To accomplish this,
the Foster Grandparent Program offers a small,
tax-free stipend to volunteers ages 60 and older
in exchange for volunteer services in public and
non-profit settings like schools, Head Starts,
after-school programs, and childcare centers.
During this past school year, the IOD’s Beth
Dixon visited several Foster Grandparent
groups to speak about children on the autism
spectrum and some strategies for working with
them. “The volunteers showed a huge interest in
finding out the basics about autism,” said Beth.
“They were really concerned about the kids and
wanted to know just what they were dealing
with.”
“Our volunteers had a lot of questions,” said
Program Director Alane Hill. “Beth was really
great and very informative.”
Typically, Foster Grandparents spend anywhere
from 15 to 40 hours per week in service. They
nurture and facilitate cognitive development
in infants, provide preschoolers with the
A Foster Grandparent volunteer hel
ps
a student with reading
building blocks for school readiness, tutor
children lagging behind in reading and math,
provide emotional support and guidance to
abused, neglected, and troubled youth, and
assist children with disabilities, including
children with Asperger’s Syndrome and
autism. In addition to the significant impact
this commitment makes on children, the impact
on senior volunteers is just as great. They
have the opportunity to establish meaningful
relationships with children and school personnel
while renewing connections within their
communities.
For more information on the
Friends Foster Grandparent Program,
visit www.friendsprogram.org.
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.