Fall 2014 The Link Between Down Syndrome &

Fall 2014
In This Issue
News & Events
Find out what’s been
going on with the EPDSC
and friends.
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Buddy Walk Photos
Have a look at all of the
beautiful faces at our annual event.
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Curriculum Deisgn
Q&A for creating an inclusive classroom for all.
8
Special Needs Attorney?
Find out what to look for
when seeking legal assistance.
10
Above the Line
Find out who in our community is doing amazing
things!
11
Mark Your Calendars!
Make sure to RSVP for
the upcoming EPDSC
holiday party.
12
The Link
Between Down
Syndrome &
Alzheimer’s
Disease
Researchers in Denver have found a
definitive link between Down syndrome
and Alzheimer’s disease.
“If we want to find a cure to
Alzheimer’s, we have to further study
Down syndrome,” scientist Huntington
Potter said.
Potter and his colleague Tom
Blumenthal testify at a congressional
hearing in Washington D.C. on
Wednesday.
“We’ll be meeting with members
of Congress and telling them about the
connection and hope this will improve the
chances for better funding for NIH,” Potter
said.
Potter and Blumenthal work at the
Linda Crnic Institute for Down Syndrome,
which is based at the University of
Colorado - Anschutz Medical Campus .
Their work is funded by the Denver-based
Global Down Syndrome Foundation.
“The connection between Down
Syndrome and Alzheimer’s became
known gradually,” Blumenthal said. “As
people with Down Syndrome got older..
and they didn’t used to...they got old
enough to get Alzheimer’s.”
Down Syndrome is a genetic disorder
caused by an extra copy of the 21st
chromosome.
“And that, turned out to have on it
the gene that causes Alzheimer’s disease,”
Blumenthal said.
Potter has just concluded trials on
mice into a cure for Alzheimer’s. He is
cautiously optimistic but very pleased at
where the research is pointing.
“We discovered people with rheumatoid
arthritis make a protein that releases into
the blood and seems to protect them,”
Potter said. “The mice that are given this
protein don’t get Alzheimer’s disease. Now,
we’re starting this clinical trial to prevent
Alzheimer’s disease in typical people.”
Potter said there is an FDA-approved
drug that he is using in the trials. It is called
Leukine and prescribed for people following
bone marrow transplants.
“We wouldn’t recommend people try
it on their own even though it is an FDAapproved drug. Wait until we do the clinical
trials first,” Potter said.
To find out more information about
applying for this clinical trial, contact
the Memory and Dementia Clinic at the
University of Colorado Anschutz Medical
Campus: http://bit.ly/1qeyxKa
Not all applicants will be accepted.
Scientists are looking for people who have
no other medical issues aside from the
Alzheimer’s disease.
It may take up to five years for some
solid results from these studies.
“It’s among the most exciting time in
biomedical research there has ever been,”
Blumenthal said. ~Down Syndrome World
the
EPDSC
Board of Directors
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Letter from the President
Kevin Neiley
Mike Carney
Chris Farrell
Nicole Geloso
Steve Neary
Teresa Romano
Bobby Lanyon
Jason Anderson
Jen Burd
Kelly Nelson
Michelle Levene
Kathi Eichman
Hello Friends,
Officers
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Mike Carney, President
Bobby Lanyon, Vice President
Steve Neary, Treasurer
Kevin Neiley, Asst. Treasurer
Jen Burd, Secretary
Staff
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Don Levick, M.D., MBA, Medical Director
Renee Morrow-Connelly, D.O. Pediatrics
Scott Rice, M.D., Pediatrics
Amy Healy, MS, OTR/L
Andrea Meeker, MS, OTR/L
Kelly Nelson, MS, OTR/L
Patti Mertz, Center Coordinator
Maria Floryshak, Center Coordinator
Anne Marie Dolinish-Meltzer, RN,BSN,
Clinic Consultant
Claire Dainese, Office Assistant
Sherrill Cormack, Newsletter Editor
Diana Santoro, Newsletter Design
Have you ever felt like the weight of the world is bearing
down on your shoulders? This is somewhat of a rhetorical
question to be asking a parent of a child with special needs,
but it’s an honest one. Is it really fair that you had to take time
off of work to sit through a three-hour IEP session, coordinated
your family’s schedule so your child can attend 1,2,3 or even 4
therapy sessions? At the same time, is it fair that there is hunger,
crime and disease in the world we live? The simple answer to
all this is no, it’s not fair, but we plow through the tough times
and accept life for what it is. How do we do this? It could be our
faith, family, internal perseverance or the smile and laughter we
receive from the innocence of our children.
When Olivia was born, people would call Wendy and I
“special parents for special kids.” At that time, I loathed this
statement. There is nothing special about me. Why would you
say that to me? In retrospect, maybe they are actually right.
We are a special breed of people. Several times a day, a
week, month or year we look forward to better ALL our children.
Helping our loved ones achieve milestones, conquer and excel
beyond the status quo is what we do. Numbers, statistics and
medical jargon have different meanings to us. Sometimes they
mean nothing and other times they appear as hurdles that we
either go over or figure a way around. Why do we do this? It’s
tiresome and the weight gets very difficult to carry sometimes.
Our payment for this lies in our loved ones. They look to us
for guidance and help. We are there for them, pushing them
along to be successful. Whether in gratifying words, heartwarming gestures or outright bursts of laughter, our bank
accounts become full and it’s another job well done.
On the coattails of Down Syndrome Awareness Month, keep
moving forward and celebrate who you are and what you are
accomplishing, because we are special.
Cheers,
Mike Carney
President, EPDSC
The 15th Annual Buddy Walk was a HUGE Success!
The sun was shining, the jumbotron was showing
pictures throughout the day!
The results are in:
• 955 walkers
• 80 volunteers
• $58,000 raised
• Over 100 baskets raffled
• 300 pizzas devoured
• 1,700 bottles of water guzzled
• Countless smiles/laughter and faces painted
Thank you to all who came to celebrate Down
syndrome awareness. We value your support and we
are so privileged and honored to serve you. It is so cool
to walk around during the Buddy Walk and catch up
with familiar friends and meet new friends and their
families. This year was a major milestone for the EPDSC
celebrating its 15th year.
I want to say a special THANK YOU to Maria
Floryshak, Michelle Levene, Sue McGorry, Steve Neary,
Chris Farrell, Jen Burd and Liz DeSantis for their
work on the committee. Each year, the work begins
in February to ensure that the event runs smooth and
effective. Without these amazing people the Buddy Walk
wouldn’t happen...it’s that simple. If you would like to
join this amazing team please connect with us at the
center.
Congratulations to all teams for getting many people
to join your team and also to raise the much needed
money to keep the EPDSC making a difference in the
Down syndrome community.
With that said, we did not quite reach our needed
goal of $65,800. If you would like to make a donation to
the Buddy Walk for 2014 you can do so up to December
31st. Please email [email protected] or simply send
in a check to the center.
It has been such a privilege to organize the Lehigh
Valley Buddy Walks and I cannot wait to see you all next
year. The date is Saturday, September 26th, 2015. More
details to come! See you at the Walk!
~Bobby Lanyon, Buddy Walk Coordinator.
Thank You To Our Buddy Walk Corporate Sponsors And Donors!
Corporate Sponsors:
Donations:
TITLE
Mass Mutual Financial Group Eastern PAS
(formally Lehigh Valley Financial Group)
1760 Pub N Grille
Advance Auto Parts
Armetta’s Italian Restaurant & Pub
Auto Zone
Avon from Kelly Krick
Bartels
Bieber Transportation
Blackman’s Cycle
Bonefish Grill
Buss Paint and Wallpaper
Candys Homemade Ice Cream & Italian Ice
Copperhead Grille
Cracker Barrel
Dietrich’s Men’s Shop
Edible Arrangements Leesport
Erb Electric
Fiesta Ole
Freckle Face Fudge
Friendly’s
Giant
GingerBread House Gifts & Antiques
Heatwaves Tanning Salon
Hinnerschietz Recon
Holiday Hair
Home Depot
Italiano Delight
Joe’s Pizza and Italian Restaurant
Kay Jewelers
Kline Family Ink
Kuzan’s TrueValue Hardware
LA Nails Hamburg
Mark’s Sandwich Shop
Mary Kay from Stephanie Werner & Kim
Kissinger
Lehigh Valley Health Network
LVHN Information Services Special Events Committee
St. Luke’s University Health Network
GOLD
Brian J. Wittig Memorial Enrichment Fund
O.R.E. Rentals
SILVER
Capital Blue Cross
Pepsi
BRONZE
Allentown Area Corvette Club
Allentown Family Foot Care
Freeze Frame Photo Booth
Just Born Candies
MTM Financial Group
BUDDY
Good Shepherd Rehab Hospital
Services United Inc.
Meisner Electric
Abe Joseph Sertoma Club
Knights of Columbus
Master Supply Line
Mind’s Eye Tattoo & Body Piercing
Murphy Jewelers
Outten Chevrolet of Hamburg
Oxyfit Gym
Red Robin
Ruth’s Dress Shop
Schwan’s
Sittler Golf Center
Sweet Memories
Ten Thousand Villages
Texas Roadhouse
The Doris Berry Shop
Tohickon Family Campground
Wally’s Deli
Weis
News & Events
Great Things Are Happening
at the EPDSC!
Changes are occuring at the EPDSC. Renovations
are being made to the Trexlertown medical facility.
Due to this work, our consult/therapy room has been
moved next to our exam room. A ribbon cutting
ceremony was conducted on October 30, 2014 with
our first clients to occupy the new room.
In the picture from left to right: Andrea Meeker
(OT), Magnolia and Dawn Przyborowski and Dr.
Donald Levick (medical director).
What was Your Buddy Walk Experience ... ?
Everyone tells their Buddy Walk story in a different way.
More than 800 of us gathered at Daniel Boone High School on
October 12 to celebrate Down syndrome at the (Berks county)
3rd Annual Reach for the Stars Buddy Walk. Teams
dressed in matching shirts, waving home made signs, beaming
from ear to ear, eager to show off their spirit and love for their
buddies. Some are seasoned Buddy Walkers and for others it
was a brand new, exciting experience!
Shelby Lu Hummel, mother of sweet Matti, responded
in this way: ”As you know, it was our 1st. It was emotional,
incredibly inspiring, heartwarming and gave me a great sense
of communal togetherness. There was such a great feeling of
selflessness and pure happiness that I just was truly moved by it
all. Your heart and love has reached many, mine included.”
There was a lot to see and do at our walk this year. Green
Tea Revival provided live music for us all day long. People set
up lawn chairs right in front of the stage, so they would not
miss a beat! Kids, young and old, danced to every song! Laura
Callander, mother of our Buddy Jack, told us how much she and
Team Jackaroni loved the day. “The band was awesome,” said
Callander. “My family sat near them and watched all the kids
play ball and listen to great music. They said it was the BEST
Buddy Walk yet!” Marian and Friends entertained our guests
with a delightful ventriloquist show. An Event to Remember
came and set up a photo booth for team pictures and it proved
to be the perfect place to sneak in and be silly. Activities were
around every bend: pumpkin painting, photo opportunities with
princesses, balloon animals, bike riding, miniature pony petting,
and a bounce house. Include Me From the Start, Reece’s
Rainbow, Aaron’s Acres, Shady Hollow Assistive Riding, and
John Paul II Center for Special Learning were just a few of our
vendors who came to share information and show support to
our buddies and their families.
Our day began with a proclamation from Mayor Joseph
Peterson, declaring October 12, 2014, Reach for the Stars Buddy
Walk Day! We then presented our top 3 fundraising teams with
an iPad mini. Logan’s Heroes, Jay Walkers, and James and the
Giant Peaches were the recipients of the iPads. Next up, we
presented, for the very first time, our “Joe Joe Geloso Heart
of Gold Award.” accompanied by a $321.00 scholarship. The
Mattuiz Family received the award because they exemplified
the following: participation in Reach for the Stars events
throughout the year, initiation of their own family outreach
and fundraising events, a willingness to help others, having a
true heart for our Buddies and their families, displaying and
understanding the importance of Reach for the Stars and what
we aim to do in our Berks County community. We are honored
to live amongst such great people!
Abigail Henry, an eighth grader with Down syndrome at
Exeter Junior High School was our key note speaker. She,
accompanied by her parent, Nancy and Larry, sister, Elizabeth,
and cheerleading squad, stood in front of everyone and spoke
from her heart. Abigail then led a “Blue and Yellow” cheer that
kicked off our walk! During the planning of our ceremony, when
we approached the Henry family about Abigail speaking, Nancy
promptly responded with, “I love being part of the magic!” I am
so proud that we are able to create this experience for everyone
to interpret in their own way. ~Nicole Geloso
News & Events
Do you have a
“Life Care Plan”?
What is a “Life Care Plan”?
2014 Non Profit
Awareness Expo
We hope you had the opportunity to
attend the 2014 Non Profit Awareness Expo
held at the Lehigh Valley Mall on September
13, 2014. This was an opportunity for nonprofit organizations to advance their mission
and connect with the public, while at the
same time celebrate their contributions to the
community.
The EPDSC attended this event sharing
information on Down syndrome, the Center,
the Lehigh Valley Buddy Walk and Down
Syndrome Awareness Month. We thank Kelly
Nelson, Mike Carney and Maria Floryshak
for giving of their time to share the Center’s
mission and commitment to individuals with
Down syndrome.
Many conversations took place with
interested individuals and community
establishments. We look forward to
connecting with the volunteers and other
non-profit groups that exchanged information
with us.
If you are interested in sharing
information about the Center at other
events, please contact the Center. We can
always use additional help in spreading
accurate information on Down syndrome and
advocating for our family members.
It is a holistic approach involving a disabled person’s
network of advisors in the development of a life care
plan that can help the disabled person maintain the
lifestyle that he or she needs. It is a coordinated
program of future care planning, financial, and
legal strategies for people with disabilities and their
families. Developing a life care plan is not something
you should expect to accomplish in a few visits with
your advisors. A Life Care Plan continually changes
throughout an individual’s lifetime. There are primary
steps that should be considered and they will help
you develop an agenda to help keep you on track as
you consider what’s right for your situation.
You don’t have one. Why?
Don’t think you can afford it. Don’t know where to
start. Think it’s too early…or perhaps too late?
When it comes right down to it, being proactive
about developing a Life Care Plan certainly puts
some work on your shoulders. But not having one
could mean more work, more stress, more problems
to resolve, more decisions to make under pressurebeing reactive as situations arise again and again
throughout life. With a Special Care Planner to help,
you can take a deep breath and relax some. Come
see how:
Tuesday, October 21st from 7:00-8:30pm
Lehigh Valley Hospital Muhlenberg
2545 Schoenersville Road, Bethlehem, PA
18017 Classroom ECC-B (1st Floor)
Robert D. Touzeau is a Registered Representative of
and offers securities through MML Investors Services,
LLC, Member SIPC (www.sipc.org). Supervisory
Office: 3701 Corporate Parkway, Suite 320, Center
Valley, PA 18034 (610) 798-2500.
MassMutual Financial Group is a marketing name
for Massachusetts Mutual Life Insurance Company
(MassMutual) and its affiliated companies and
sales representatives. Local sales agencies are
not subsidiaries of MassMutual or its affiliated
companies. CRN201603-181027
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Lehigh Valley EPDSC
2014 Buddy Walk
7
Q & A: Curriculum Design for ALL in the
Inclusive Classroom
This article is from the website of Dr. Paula Kluth.
It, along with many others on inclusive schooling,
differentiated instruction, and literacy can be found
at www.PaulaKluth.com. Visit now to read her Tip
of the Day, read dozens of free articles, and learn
more about supporting diverse learners in K-12
classrooms.
How can teachers prepare lessons for students
with and without disabilities in the inclusive
classroom?
There is perhaps no better way to make sure that
curriculum resonates with students than to include
them formally or informally in the planning process.
Even students in pre-school and kindergarten can
participate in curriculum
design by making choices
about what they want to learn
and bringing questions into
the classroom. They may
want to further develop their
gifts and strengths or explore
curricula related to their
curiosities (e.g., What makes a
rainbow?).
Teachers should also
give all students a variety of
ways to learn and interact in
the classroom. Lectures and
whole-class discussions can
be part of the instructional
day but they cannot be the
only lesson format employed
or even the primary format
employed. Students should
have opportunities to
experience a wide range of
lesson structures including
simulations, role plays,
debates, cooperative learning,
projects, games, drama, workshops, stations or
centers, community-based instruction and labs.
Students with and without disabilities will be more
engaged, retain more, learn in a deeper way, and
use higher-order thinking skills when they have
opportunities to investigate course content through
different avenues.
Using a variety of instructional materials will
also help all students learn. Students who are
studying United States geography and culture
might be introduced to maps, globes of different
sizes, brochures from different state landmarks, tour
books, travel literature, new and “used” postcards,
travel posters, vacation photos and videos from
the families of students in the class, and software
and websites related to the U.S. and its people. This
selection of materials is important because it offers
every learner a chance to be successful and learn in a
way that suits them best. One student may be unable
to effectively interact with an atlas or globe, but
may be able to learn concepts easily by creating and
studying a salt and flour map of the continents.
What about the standards? Is it possible to have
both inclusion and a standards-based curriculum?
The presence of students with disabilities in inclusive
schools should actually help teachers in standardsbased classrooms. Students with diverse learning
characteristics often inspire teachers to use a wider
range of teaching strategies, educational materials,
and lesson formats.
While some teachers may be apprehensive about
giving up the textbook and traditional instructional
practices in this climate of highstakes testing, the effective use
of diverse teaching practices
can actually enhance learning
for many students (UdvariSolner, 1996). Teachers can use
the standards as a curricular
guide but retain multi-level and
student-centered techniques and
strategies.
In other words, teachers need
not respond to the standards
movement by standardizing
teaching and learning. Clearly, a
student should not be expected
to know and do exactly the same
things as her same-age peers at
the end of a school year. For this
reason, the standards must be
viewed as flexible. This orientation
to the standards provides different
students in the same classrooms
with opportunities to work on a
range of concepts and skills, based
on individual abilities, needs,
and interests (Natriello, 1996; Reigeluth, 1997). For
example, students may meet the standard, “explain
to others how to solve a numerical problem”, in
dozens of different ways. Some may use calculators
or manipulatives to show understanding, other
students may be able to explain in a written
paragraph, still others may best express their
knowledge by designing flow charts. In addition,
students in the same classroom may be expected
to focus on problems that range in complexity with
some students describing the process for adding
single digits and others designing and explaining
binomial equations.
What if the child with disabilities has different
learning objectives than others in the class? What
can a child with significant disabilities do in an
academic class?
Some parents and teachers assume that some
students with disabilities cannot be provided an
inclusive education because their skills are not
“close” enough to those of students without
disabilities. This is perhaps the most common
misconception about inclusive schooling and
the law that exists among families and teachers.
Students with disabilities do not need to keep up
with students without disabilities to be educated in
inclusive classrooms; they do not need to engage in
the curriculum in the same way as students without
disabilities; and they do not need to practice the
same skills as students without disabilities. In sum,
there are no prerequisites needed
in order for a learner to be able to
participate in inclusive education.
For instance, a middle school
social studies class is involved in a
lesson on the Constitution. During
the unit, the class writes their own
Constitution and Bill of Rights
and reenacts the Constitutional
Convention. Malcolm, a student with
significant disabilities, participates
in all of these activities even
though he cannot speak and is
just beginning to read. During the
lesson, Malcolm works with a peer and a speech
and language therapist to contribute one line to
the class Bill of Rights; the pair uses Malcolm’s
augmentative communication device and a writing
software program to write the sentence. Malcolm
also participates in the dramatic interpretation of
the Constitutional Convention. At the Convention,
students- acting as different participants of the
Convention- drift around the classroom introducing
themselves to others. Since he cannot speak,
Malcolm (acting as George Mason) shares a little bit
about himself by handing out his “business card” to
other members of the delegation. Other students are
expected to submit three-page reports at the end of
the unit but Malcolm will be assessed on a shorter
report (a few sentences) which he will write by
choosing phrases on his communication device. He
will also be assessed on his participation during the
class activities, on the demonstration of new skills
related to using his communication device, and on
how well he initiates social interactions with others
during the Constitutional Convention exercise.
The Constitutional Convention example illustrates
how students with disabilities can participate in
general education without engaging in the same
ways and without having the same skills and
abilities others in the class may have. In addition,
this example highlights ways in which students with
disabilities can work on individual skills and goals
within the context of general education lessons.
It is also important to note that the supports and
adaptations provided for Malcolm were designed
by his teachers and put in place to facilitate his
success. Malcolm was not expected to have all of
the skills and abilities as other students in order
to participate in the classroom. Instead, Malcolm’s
teachers created a context in which Malcolm could
“show up” as competent (Kluth, Villa, & Thousand,
2001).
Are there some children for whom placement
in a general education classroom (e.g., students
with significant disabilities) would not be
appropriate?
Teachers (and families) often make
assumptions about what students can and
cannot achieve based on beliefs they have about
their label or disability. Educators, however, are
often wrong about students and their
potential. For example, throughout
history, educators have assumed that
several different populations of people
who behaved differently were unable
to learn including people with cerebral
palsy, people with autism, and the Deaf.
Historically, teachers have also made
damaging negative assumptions about
the learning potential of girls, students of
color, and students who use English as a
second language.
Many teachers are beginning to
see that students with autism, Down
syndrome, and other disabilities are finding
“unexpected” academic and social success
when provided with opportunities to become
members of the general education classroom
(Broderick & Hendrickson, 2001; Jorgensen, 1998;
Kliewer & Biklen, 2001; Martin, 1994; Rubin et
al, 2001). Students without reliable, functional,
communication, those with significant behavior
challenges, and even those who struggle to
complete any classroom task or activity in a
traditional way have received a successful
education in inclusive classrooms.
References
Broderick, A., & Kasa-Hendrickson, C. (2001). “SAY JUST ONE WORD AT
FIRST”: The
emergence of reliable speech in a student labeled with autism. The Journal of
the Association for Persons with Severe Handicaps, 26, 13-24.
Kliewer, C., & Biklen, D. (2001). “School’s not really a place for reading”: A
research synthesis of the literate lives of students with severe disabilities. The
Journal of the Association for Persons with Severe Handicaps, 26, 1-12.
Kluth, P., & Straut, D. (2001, September). Standards for diverse learners.
Educational Leadership, 59, 43-46.
Kluth, P., Straut, D., & Biklen, D. (Eds). (2003). Access to academics for all
students: Critical approaches to inclusive curriculum, instruction, and policy.
Mahweh, NJ: Erlbaum.
Kluth, P., Villa, R., & Thousand, J. (2001, December/January). “Our school
doesn’t offer inclusion” and other legal blunders. Educational Leadership, 59,
24-27.
Martin, R. (1994). Out of silence. New York: Penguin.
Natriello, G. (1996). Diverting attention from conditions in American schools.
Educational Researcher, November, 7.
Reigeluth, C. M. (1997). Educational standards: To standardize or to customize
learning? Phi Delta Kappan, 79, 202-206.
Udvari-Solner, A. (1996). Examining teacher thinking: Constructing a process to
design curricular adaptations. Remedial and Special Education, 17, 245-254
9
What Should You Consider When
Selecting a Special Needs Attorney?
Planning for the future of your loved one with special
needs is a complex process. Where will the money come
from? What resources are available? Are there government
programs, non-profits, foundations, churches, community
groups, family members or individuals who can help?
What medical care will be needed? Where will the
individual live? Work? Go to school?
In order to find answers to all of these questions, you
may need to reach out to many people, experts in various
fields such as health care, social work, education, disability
advocacy, financial services and law. You will need to have
frank discussions with family and
close friends. You may need to look
for other families struggling with the
same issues you are dealing with,
to give you advice and support.
Together these individuals help
form your special needs team. A key
leader of your team, because of the
critical nature of his legal expertise,
is the special needs attorney. It’s
therefore essential that you choose
your attorney well.
A good special needs attorney
should have the following qualities:
Knowledge. The lawyer should
be an expert in federal social
security programs for individuals
with disabilities and their families,
including application processes, eligibility requirements,
and continuing qualification standards for such programs
as Medicare, Medicaid, Medicaid Waiver Programs,
Children’s Health Insurance Program (CHIP), Children
with Special Health Care Needs (CSHCN), Supplemental
Security Income (SSI), Social Security Disability Insurance
(SSDI), and state-mandated insurance programs.
Secondly, the lawyer should be an expert in
laws governing the education of children and adults
with disabilities, such as Section 504 Plans under the
Rehabilitation Act of 1973, the No Child Left Behind
Act, Individuals with Disabilities Education Act and
Individualized Education Programs (IDEA and IEP), and
state-administered Qualified Tuition Plan under section 529
of the tax code.
Thirdly, the attorney should be an expert in the design
and drafting of special needs trusts (SNTs), which allow
you to leave an inheritance to your child without needing
to disqualify your child for government benefits, or
disinherit your child, or leave your child’s share to another
person and hope that person will provide proper oversight
and care.
Fourthly, the lawyer should be an expert in the use,
purpose, and preparation of legal documents essential
to the implementation of the special needs strategy,
including living and testamentary wills, trusts, and health
care directives and proxies, letters of intent, general and
special durable and non-durable powers of attorney,
guardianships and conservatorships.
Fifthly, the lawyer should be an expert in federal, state
and local laws and regulations governing the eligibility
and admission of individuals with disabilities to long-term
care facilities and the standards such facilities are required
to meet, elder abuse and exploitation laws (Older Americans
Act—Vulnerable Elder Rights Protection under Title VII).
Finally, the lawyer should be an expert in income, estate, and
gift tax laws as they pertain to lifetime and testamentary gifts
and transfers, as well as the Americans with Disabilities Act
(ADA) and related state anti-discrimination laws.
Experience. The lawyer’s practice should be focused
on special needs, not merely a small part of it. The lawyer
should be able to provide you with references from a number
of satisfied clients. A good way to locate
an experienced professional is to ask other
members of your team: your financial advisor,
for example, or a family dealing with the same
issues that you are, who has found an attorney
they like and trust.
Good Communication Skills. It doesn’t
matter how brilliant attorneys are if you can’t
get a speedy response from them when you
need it. Effective professionals have well-run
offices with courteous, organized staff to take
and relay messages. They get back to you
when they say they will, and work well with
other members of your team. If your attorney,
financial professional, and accountant have
worked together in the past, you’re in luck. So
once you’ve picked one of these experts for
your special needs team, consider asking that
individual for recommendations to fill the other positions. If
they’ve worked well together in the past, they will very likely
work well together as your team.
Resourcefulness. Everyone’s situation is unique, and the
special needs attorney needs to be able to respond to your
particular set of circumstances. When money is short, when
the future’s unclear, when medical crises arise, or when other
less-than-ideal circumstances present themselves, you’ll want
an expert with creativity and imagination to manage your
long-term special needs strategy.
The goal of the special needs team is to ensure the best
possible quality of life for the individual with the disability
while safeguarding the assets of the family. When your team
is headed up by a special needs attorney possessing these
qualities, you’re well on your way to reaching that goal.
The information provided is not written or intended as specific
tax or legal advice and may not be relied on for the purposes of
avoiding any Federal tax penalties. MassMutual, its employees
and representatives are not authorized to give tax or legal advice.
Individuals are encouraged to seek advice from their own tax or
legal counsel. The Chartered Special Needs Consultant (ChSNC®)
- a professional designation awarded to those individuals who’ve
completed 120 hours of academic classes in addition to holding
either Chartered Life Underwriter (CLU), Chartered Financial
Consultant (ChFC) or Certified Financial Planner (CFP) designations
and previously completing the Special Care Planner certification
program. The ChSNC designation was developed by The American
College in Bryn Mawr, Pennsylvania. The certification program
and the professional designation evolved from MassMutual’s
SpecialCare(SM) Program.
© 2013 Massachusetts Mutual Life Insurance Company 01111-0001
SC3106 CRN 201506-172359
Above
_____________________________________________________________________
The Line
On May 18, 2014,
I was standing in the
wings of the high
school auditorium,
watching the closing
ceremonies for the
2014 3d Dance Studio’s
annual recital. It was
very similar to the eight
previous dance recitals
— I was clapping
enthusiastically,
delighted to see Tess
doing something
that brings her such
joy, yet feeling relieved that another year of
rehearsals, primping and costume changes is
again behind us.
Tess was awarded the trophy— along
with the other dancers— that she has come
to expect, marking her success in completing
another year of dance instruction. And
then something very different happened:
Miss Danielle quieted the audience and
announced the 3d Superstar Dance Award,
recognizing the dancer who she identified
as demonstrating outstanding enthusiasm,
commitment, and determination in the dance
program, serving as a role model for the
other students. She announced Tess’s name,
chosen from the pool of 110 other students
of the dance company! This was certainly
unexpected, and particularly meaningful,
as it is what I call a “standout” award...not
the run-of-the-mill “thanks for participating”
medal, trophy or certificate. And even better,
Tess knew this, too. She leaped up, repeating
over and over, “I won. I won.” I certainly may
be biased as her mom, but I consider Tess
a “winner” everyday. Yet on this day, Tess
felt it deep within as she glowed with pride
about her “standout” award. She approached
the microphone and offered her humble,
“thank you.” No, I thought, thank YOU, Tess,
for showing me and others, that incredible
achievement is possible, particularly when
doing something you love.
ESU Homecoming Queen 2014:
Elizabeth Porter
Walking around campus I saw advertisements for
homecoming, and that’s when I got the idea for running
for homecoming queen! I looked up on my computer on
the ESU website to find out what the requirements were
for running for homecoming queen. After figuring it
all out I went to my mentors; Dylan, Trista and Christina
where they helped me fill out my application and submit
my entry video. Once finding out that I was a candidate
for homecoming queen, that’s where all the hard work
came into play. Dylan Doran, Trista Renninger, Christina
Nicoletti and Kristina Allan helped me put together
a video that the judges voted on. We went all over
campus and had many people in my video to make it
turn out great! The charity that I chose to raise money
for was P.P.O.D.S (Pocono Parents of Down Syndrome.)
I made a box where my friends at East Stroudsburg
University could donate to my charity if they wanted to.
My mentors and I helped me put together a fundraiser
at Red Robin where we raised 150 dollars! It made
me happy to see all my friends come out and support
me! We set up a table outside of East Stroudsburg’s
Union where I handed out free taffies and asked people
to vote for me for their homecoming queen!! After a
week of fundraising and advertising for homecoming
queen, we finally got to see if our hard work paid off at
the Bonfire on Friday. It was so neat to see everyone at
the bonfire cheering me on as the announcers called all
the candidates across the stage. They announced the
runners up for both for queen and king, and the moment
that everyone had been waiting for- homecoming queen
and king. When the announcer called my name for
homecoming queen, my jaw dropped with excitement.
I could not believe that I was East Stroudsburg
University’s homecoming queen!!! I am the first student
with Down syndrome to run and win for homecoming
queen. I have set a huge example for my fellow students
in the CILLS program. Anyone can run for homecoming
queen or king and no matter what the outcome will be
11
we are winners at the end of the day!
Mark Your Calendars
You’re invited to celebrate the holidays with good
food, great friends and Santa, of course!
Date: Saturday, December 6th
Time:10:00am - 12:30pm
Place:The Marian Inn at Our Lady of Perpetual Help Church, 3221 Santee Road, Bethlehem, PA
18020
RSVP by November 26th to (610) 402-0184 or
[email protected]
Current Members & Their Children – FREE
Non-Members – Adults $15; Children $10
PO Box 60
6900 Hamilton Boulevard
Trexlertown, PA 18087
Contact Us
Phone:
Fax:
Email:
Web:
610.402.0184
610.402.0187
[email protected]
www.epdsc.net
A note from Santa’s Elves…
So that Santa may give each child a
present, we are asking each family
to provide a small wrapped gift
(~$5.00) for each child they bring.
Please write the child’s FULL
NAME on the present and place all
presents for your family
in one bag!
HO HO HO!!!