spring 2013
Bookstore Spotlight
Assistive Technology
Solutions in Minutes
II: Ordinary Items,
Extraordinary
Solutions
by Therese Willkomm,
Ph.D.
AT “MacGyver”
Therese Willkomm
returns with her
second book of five-minute, lowcost approaches and solutions
for individuals with disabilities.
Picking up where the first book left
off, this book demonstrates creative
DIY problem solving without the
need for power tools or electricity.
It features hundreds of color photos
for step-by-step fabrication, a DVD
of how-to video clips, and a bonus
sample of VELCRO® Brand Sticky
Back for Fabric fasteners.
Available for $50 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
Grant Supporting Free AAC Training in NH . . . . 2
Malloy Presents at Briefing for Congress . . . . . .2
Did You Know?. . . . . . . . . . . . . . . . . . . . . . . . . 2
Calendar of Events . . . . . . . . . . . . . . . . . . . . . 3
Mental Health Survey: 5th Year of Data . . . . . . 4
Young Adults Enliven and Inspire the NEGC . . .4
Ann Dillon Appointed to NH Disability Commission
IOD staff member Ann Dillon has been named
to NH Governor Maggie Hassan’s Commission
on Disability. Ann’s appointment to the
commission extends through November 2016.
“I look forward to serving on the commission
and defining how I can be of assistance in
assuring that New Hampshire citizens lead full
and meaningful lives in their communities and
the state,” says Ann.
Ann brings her expertise to the commission as
a parent of a young woman who had disabilities
and chronic health conditions and experienced
many of the state’s educational and care
systems during her life. Professionally, Ann is a
registered and licensed occupational therapist.
She coordinates the IOD’s New Hampshire
Leadership Series, a seven-session training
and advocacy program for individuals with
disabilities and family members which provides
information and strategies to effectively impact
local and state organizations on disability-related
issues. She also serves as a faculty member for
the New Hampshire Neurodevelopmental and
Related Disabilities (NH LEND) program, a
graduate-level personnel preparation program
which cultivates leaders in diverse fields
who work to improve the lives of children
with special health care needs. Additionally,
Ann consults on the
New England Genetics
Collaborative’s “Genetics
Education Materials for
School Success” website.
The commission’s goal
is to remove the barriers,
architectural, attitudinal
or programmatic, that
bar people with disabilities
from participating in the mainstream of society.
The group advises the Governor, state agencies,
and the NH legislature on the needs, rights, and
interests of citizens with disabilities, making
recommendations related to state programming,
plans, and services budgets. The group
also coordinates and monitors state agency
compliance with the Americans with Disabilities
Act.
“What I love most about New Hampshire is the
all-hands-on-deck ethos of our people,” says
Governor Hassan in Ann’s appointment letter.
“I greatly appreciate [her] willingness to devote
[her] time, energy, and expertise to serve [her]
fellow citizens as a member of this board.”
For more information, visit
www.iod.unh.edu.
Sue Fox Named to Commission on Medicaid Care
IOD Associate Director Sue Fox has been
appointed to the newly-formed New Hampshire
Commission on Medicaid Care Management.
Created to ensure patients and providers are
protected as the state moves to a managed
care model for its Medicaid program, the
commission brings together members of the
public representing a broad range of experience
in health care issues to review and advise on
the implementation of an efficient, fair, highquality Medicaid management system. The
commission includes members with expertise
in managed care and payment reform models
of care, Medicaid public policy, elderly affairs,
children’s health, public health, mental health,
developmental disabilities, and adult health care
services.
“With new
tools and
federal funding
available, New
Hampshire has
an opportunity to
greatly strengthen
our health care
system. Moving
forward with
implementing
Medicaid
managed care is critical
to ensuring that we are
able to effectively expand
Medicaid coverage and
maximize our health care
dollars,” Governor Hassan
says. “I also recognize the
concerns and challenges
surrounding managed
care implementation.
Members of the commission will leverage their
significant experience to review implementation
and provide insight to ensure we are protecting
both patients and health care providers.”
The Medicaid care management program,
as enacted in 2011, is intended to improve
the value, quality, and efficiency of services
provided through Medicaid, stimulate
innovation, and generate savings for New
Hampshire. The program is to be implemented
in three phases through contracts entered
into between the Department of Health and
Human Services and certain Managed Care
Organizations who are responsible for providing
health care services to members enrolled in the
New Hampshire Medicaid Program.
For more information, visit
www.iod.unh.edu.
800315
10 West Edge Drive, Suite 101
Durham, NH 03824
Malloy Presents at
Briefing for Congress
JoAnne Malloy, Ph.D. (far right in
photo), clinical assistant professor at
the UNH Institute on Disability, joined
Congresswoman Grace Napolitano
(D-CA) and other mental health
professionals at a legislative briefing
for members of Congress and their
staff in Washington, D.C. Tuesday,
May 7, in recognition of National
Children’s Mental Health Awareness
Week.
Malloy discussed IOD projects
RENEW (Rehabilitation,
Empowerment, Natural supports,
Education and Work), which provides
school-to-career transition planning for
youth with emotional and behavioral
disabilities; and APEX (Achievement
in Dropout Prevention and Excellence),
an effective approach to dropout
prevention for vulnerable youth.
To view a video of the entire briefing
and to read more, visit
www.iod.unh.edu.
2
Did You Know?
According to the New
Hampshire Disability
and Public Health
Needs Assessment
(2013), NH adults
ages 18-64 with disabilities are more
than twice as likely (31.9%) as adults
without disabilities (15%) to be
sedentary and not engage in physical
activity. Adults with disabilities are
also nearly twice as likely (40.6%) as
adults without disabilities (21.8%) to
be obese.
In an effort to reduce some of the
disparity, the New Hampshire
Disability and Public Health project
(DPH) will introduce an obesity
prevention program for transition-age
youth with disabilities and for parents
of children with disabilities. The
program will be hosted online by New
Hampshire Family Voices at
www.nhfv.org.
For more information, visit
www.iod.unh.edu/dph.
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!
Grant Supporting Free AAC Training for NH Educators
In New Hampshire and nationally, current
data on students who require communication
supports to fully participate in school and
community settings suggests that 50% do
not have any communication device in place.
For the other 50%, what is provided may not
adequately meet students’ needs. These numbers
apply for students who have what are viewed as
the “most significant disabilities.”
Hampshire school districts (K-12) for students
who benefit from supports to communicate via
AAC. In addition to in-person trainings and
monthly webinars, the project is in the process
of establishing an online learning destination,
complete with guided self-study modules and
other information and resources for educators.
“We need to keep our eye on the prize!” says Pat
Mirenda, Ph.D., senior advisor on the project
To address these gaps in communication
and an AAC expert from the University of
services, a new project from
British Columbia. “Students
the Institute on Disability is
with significant disabilities
“By providing high-quality
providing critical statewide
need to be in general
training, this initiative
training on augmentative and
education classrooms, learning
will enhance educators’
alternative communication
meaningful academic content,
capacity to make
(AAC), a method of
and participating in the social
meaningful differences
communication for individuals
life of school with AAC
in educational outcomes
with limited or no speech
supports for communication,
for students with complex
capabilities. The project,
literacy, and peer interactions.”
communication needs.”
entitled the NH AAC Initiative,
In addition to advisory support
is funded by a fifteen-month,
from Mirenda, partners on the
$100,000 grant from the New Hampshire
project include the New Hampshire Department
Department of Education, Bureau of Special
of Education’s Bureau of Special Education,
Education.
the University of New Hampshire Department
“By providing high-quality training, this
of Communication Sciences and Disorders, and
initiative will enhance educators’ capacity to
Crotched Mountain ATECH Services.
make meaningful differences in educational
For more information about the project, visit
outcomes for students with complex
www.LearnAAC.org.
communication needs,” says Michael
McSheehan, NH AAC Initiative Project Director.
The NH AAC Initiative is making professional
development available at no cost to all New
Highlighting IOD Donors
NH Leadership Series Receives Support from
Around the State
The New Hampshire Leadership Series has a
long history of cultivating leaders who drive
systemic change on issues related to disabilities.
Graduates of the Leadership Series can be
found in every corner of the state, helping to
positively influence local and state policies and
ensuring that all individuals—including those
who experience disabilities—are included and
supported in schools and communities.
As federal and state budgets remain uncertain,
the Leadership Series depends more and
more on private funding sources to support
the program. Fortunately, foundations and
individuals in New Hampshire acknowledge the
long-term substantial impact that the program
has in local communities, and they continue to
pledge their support via grants and donations.
Two foundations—The Gilbert Verney
Foundation and The Jack and Dorothy Byrne
Foundation—recently awarded the Leadership
Series with grants totaling $15,000.
In addition to seeking grant funding, the
Leadership Series launched an annual appeal
and sustaining donor campaign. Both campaigns
are proving successful thanks to the generous
support of past program graduates and friends of
the program.
The Leadership Series also hosted a successful
fundraising event to celebrate new and past
Series graduates and to raise money to support
the program. Over 125 alumni and supporters
gathered on Friday, April 12, 2013, for the
annual “New Hampshire Leadership Reunion
Gala and Fundraiser,” held this year at the Yard
Restaurant in Manchester, NH.
“Attending the Gala each year helps keep
us connected as leaders,” says Beth Dixon,
Outreach and Development Coordinator for the
Leadership Series. “We also get motivated by
success stories and are able to check-in with and
provide support to individuals and families that
need it.”
For the third year in a row, the funds raised were
maximized thanks to a challenge grant from the
Finlay Foundation, which committed to match
up to $5,000. All together, the event raised over
$8,000 to support the Series, exceeding the
$5,000 challenge. The total included donations,
the sale of gala tickets, and a silent raffle
that included items such as coffee with New
Hampshire Governor Maggie Hassan (a 1991
Leadership Series graduate) and a vacation
getaway.
“We are so fortunate that our local communities
and the greater statewide community support
the Leadership Series,” said Dixon. “I believe
it is because these foundations and individuals
have seen the difference the program makes for
individuals with disabilities and their families in
our beautiful state. The coming together of state
and private funding is what makes it all work.”
To learn more about making a tax-deductible
gift to the IOD, please contact:
Mary Schuh, Ph.D. – Director of
Development and Consumer Affairs
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 for
Facilitated Person-Centered Planning
An intensive five-day course designed
to help develop the competencies
needed to facilitate consumer and
family-directed career, education, and
life planning. Presented by the UNH
Center on Aging and Community Living
and the Browne Center.
Dates & Location:
May 23, 24, 30, 31 & June 3, 2013 –
University of New Hampshire, New
Hampshire Hall & Browne Center,
Durham, NH
Time: 9am–4pm daily
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) or at
www.unh.edu/summersession.
Course Name: KIN 798/898.08 –
Person-Centered Planning
Creating Inclusive IEPs Part II: Beyond
the Basics
This webinar will focus in detail on how
to approach and write each section of
an Individualized Education Plan (IEP).
Participants will learn to incorporate
standards-based goals and objectives
while reflecting a presumption
of competence and authentic
participation and learning in the
inclusive general education classroom.
Participants who have attended a
previous session on creating IEPs can
expect a brief review, as well as more
examples and in-depth explanations.
Date: May 30, 2013
Time: 3:30pm – 5pm ET
Location: Online
Cost: $59
Presenter: Cheryl Jorgensen, Ph.D.
iPad Boot Camp: Four Days of Apps,
Adaptations, and Assistive Technology
There is something for everyone at iPad
Boot Camp, a four day, hands-on iPad
training series! Participants will enjoy
interactive sessions and learn about
the many ways the iPad can be used
to support individuals with disabilities’
independence. Whether you join us for
a single day or all four, it is sure to be an
APPsolutely amazing week! Participants
will have access to an iPad during the
session but are encouraged to bring
their own if they have one.
Dates & Topics:
August 12, 2013 – iPad 101: Intro to the
Amazing iPad
August 13, 2013 – Adapting the iPad for
Individuals with Disabilities: A Makeand-Take Fabrication Workshop
August 14, 2013 – Using iPads to Achieve
Educational Success for Students with
Disabilities
August 15, 2013 – Apps and AT for Aging
Time: 9am–3pm daily
Location: Crotched Mountain ATECH
Services, 57 Regional Drive, Concord, NH
Cost: Monday, Wednesday, and
Thursday – $99 each; Tuesday – $149
Presenter: Therese Willkomm, Ph.D.
The National Center on Inclusive Education Summer Institute
When Behavior Gets in the Way:
Creating Caring Schools and Communities
About the Conference
The National Center on Inclusive Education (NCIE) Summer
Institute builds upon 15 years of experience presenting high
quality, evidence-based conferences that serve professionals,
families, and self-advocates by providing the latest
information and practical strategies in the areas of inclusive
education, post-secondary transition, and autism. The 2013
conference will provide learning experiences for families,
educators, community services providers, community mental
health professionals, and self-advocates who are working to
promote inclusive education and transition experiences for
students who have challenging behaviors.
STRANDS
Participants may attend sessions in one strand or may mix and
match sessions according to their interests. The conference
features five strands over three days:
1. Every Student College and Career Ready: Positive
Behavioral Interventions and Supports in Schools
2. The Communication & Behavior Relationship: Focus on
Augmentative Communication and Students Taking the
Alternate Assessment
3. Inclusive Classroom Strategies that Promote Positive
Relationships, Behavior, and Learning
4. Youth Leadership
Keynotes
Lydia Brown: “Reconstructing Special Education within a
Neurodiversity Framework”
George Sugai: “Multi-Tiered Support Systems: Effective and
Efficient Strategies to Prevent Challenging Behaviors”
Dan Habib: “Film Premiere on Restraint and Seclusion”
JoAnne Malloy: “We Are Here: Stories of Youth in Transition to
Adulthood”
Registration Information
Dates: July 29-31, 2013 | Time: 8am – 4pm daily
Location: Radisson Hotel, 700 Elm Street, Manchester, NH
603.625.1000 | www.radisson.com/manchester
Guests can book overnight accommodations online by
visiting the website above. Enter the promotional code
NCIE13 to receive a special reduced rate of $119 (single/
double occupancy) plus tax per night. Guests can also
mention the NCIE Summer Institute when booking over the
phone. Promotional rate available through July 7, 2013.
Registration Fees:
Professionals: $399
Students / Parents / Self-Advocates: $329
Groups of three or more: $329 each
Single day registration: $159
5. Contemporary Topics
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
Susan Fox, M.Ed., MA – Associate Director
Jennifer Donahue – Director of Finance
Matthew Gianino, BA – Director of
Communications
Andrew Houtenville, Ph.D. – Director of
Research
Mary C. Schuh, Ph.D. – Director of
Development & Consumer Affairs
Executive Committee
Carol Stamatakis – Executive Director
New Hampshire Council on
Developmental Disabilities
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
Michael S. Ferrera, Ph.D., ATC – Dean
College of Health and Human Services
University of New Hampshire
www.chhs.unh.edu
Santina Thibedeau – Administrator
Bureau of Special Education
New Hampshire Department of Education
www.education.nh.gov
The New Hampshire Public Mental Health
Consumer Survey Project recently released a
five-year summary of consumer perspectives
on the mental health care offered by New
Hampshire’s community mental health centers
(CMHCs). It documents that, although ratings
for satisfaction and quality remain high for
many, there are multiple challenges that still
need to be addressed if residents are going to
achieve and maintain good health. Results of
the study, commissioned by the New Hampshire
Bureau of Behavioral Health (BBH), suggest
many strengths of the CMHCs’ services,
including the effectiveness of services and
individual staff as well as high ratings of
satisfaction and quality over time. Parallel to
this, multiple challenges within the CMHC
service system have been identified, including
the needs for:
• sustained quality staffing support;
Richard Cohen, JD – Executive Director
Disabilities Rights Center
www.drcnh.org
• access to alcohol and drug treatment
services;
UCED Partners
• transition planning supports for youth;
Tom Bunnell, JD – Director
Institute for Health, Law and Ethics
Franklin Pierce Law Center
www.fplc.edu
John B. Moeschler, MD, MS – Director,
Clinical Genetics Program & Professor of
Pediatrics
Section of Medical Genetics
Geisel School of Medicine at Dartmouth
Children’s Hospital at Dartmouth
Dartmouth Hitchcock Medical Center
www.dartmouth-hitchcock.org
4
NH Mental Health Survey Releases Fifth Year of Data
Consumer Advisory Council
Steve Alexander – Hudson, NH
Gina Colantuoni – Bow, NH
Jeff Dickenson – Concord, NH
Jackie Driscoll – Derry, NH
Bonnie Dunham – Concord, NH
Nathan Gams – Hampton, NH
Sandy Hicks – Manchester, NH
Beth Hillsgrove – Dover, NH
Amy Howe – Hopkinton, NH
Cabrinni Kulish – Loudon, NH
Dan Louney – Bedford, NH
Kirsten Murphy – Hanover, NH
Wagner Quintanilha – Bennington, NH
Chrissy Shaffer – Litchfield, NH
Julie Smith – Durham, NH
Jim Tobin – Effingham, NH
Pat Vincent-Piet – Concord, NH
Linda Wadensten – Newport, 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
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.
• improved communication about
medications;
• better awareness and use of peer supports
and peer crisis respite;
• improved access to services;
• better coordination of care with community
services; and
• additional services such as support
personnel, programs for teens, and housing
support.
“Of course, it’s not only about what the
community mental health centers can do,” says
Peter Antal, IOD researcher and author of the
report. “There is a joint responsibility among
New Hampshire’s communities and the service
providers to ensure an effective and cohesive
level of care.”
Five years of research indicate a range of
challenges that suggest the need of both
state- and community-based solutions. Among
the challenges are the need for improved
integration of adults with mental illness into
community life, addressing the high rate of
youth suspensions/expulsion from schools,
limited employment among adults, and the poor
physical health among half of those living with
mental illness.
“As in previous years, the consumer survey
is providing invaluable information for the
development and evolution of New Hampshire’s
community mental health system,” says Erik
Riera, administrator of the NH Bureau of
Behavioral Health. “Based on survey results, we
have supported many exciting changes in New
Hampshire’s community mental health services
system.”
For more information and to download the
report, visit www.iod.unh.edu/pmhs.
Young Adults Enliven and Inspire the NEGC
The New England Genetics Collaborative
(NEGC) has valued the input of youth and
young adults for its work since the collaborative
began in 2007, but over the years, young adult
voices have become as essential to project
activities as they are inspirational.
Each year, about 450,000 adolescents with
special health care needs move from the
pediatric to the adult health care system.
Because this population continues to grow, the
NEGC focuses on the transition from pediatric
to adult health care through its Transition
work group. The group, chaired by Dr. Susan
Waisbren from Children’s Hospital Boston,
is reducing barriers to care by gathering
information on the health care status of young
adults with genetic conditions, developing
tools to assist in the process, and increasing
awareness and support for successful transitions
by sharing experience, information, and
expertise. One of the most difficult barriers that
the Transition work group has faced, however,
has been engaging the very young people that
the information and tools are meant to support.
Recognizing that it wasn’t enough to develop
the resources if they weren’t going to be used,
Dr. Waisbren, through a presentation at the New
England Regional Genetics Group’s annual
meeting in December 2011, explored why youth
might not engage. Mallory Cyr, a young woman
with a genetic condition who attended the
presentation, identified with Waisbren’s focus
on identity achievement apart from genetic
diagnosis. Since then,
she has extended
her insights to the
NEGC through her
personal stories of
transitioning through
high school, college,
and now graduate
school in Boston.
Mallory is an active Mallory Cyr (R) with
partner Owen Erq
member of the
uiaga
Transition work
group, and the NEGC is working to include
youth voice as part of its six-state Advisory
Committee. Most recently at the NEGC’s
annual meeting in April 2013, Mallory and
partner Owen Erquiaga (who also has a genetic
condition) shared about the obstacles they faced
while obtaining primary care doctors in new
settings, helping attendees to understand the
transition process from a more personal lens.
“Normal development of young adults
includes a period of upheaval as they transition
from pediatric to adult health care providers
and between adult providers,” said Monica
McClain, NEGC Project Director. “This was
clearly demonstrated by Mallory and Owen’s
experiences, to a degree many of us hadn’t
heard before.”
For more information on the NEGC and
Transition work group activities, visit
www.negenetics.org.
Stay Connected
For the latest IOD news, follow the Institute on Disability on Facebook and Twitter:
www.facebook.com/instituteondisability
www.twitter.com/unhiod