Summer 2014 - Eastern PA Down Syndrome Center

Summer 2014
In This Issue
2014 Buddy Walk
Find out what you can do
to help make this the best
Buddy Walk yet!
3
Above The Line
Find out more about
the brand new EPDSC
recognition program!
5
Special Olympics
Check out pictures of all
of our terrific athletes in
the Summer Olympics.
6
Special Ed. Is Not A Place
Avoiding pull-out services
in inclusive schools.
8
NDSC Conference Summary
Unable to attend? Find
out what you missed at
this year’s convention.
9
Sibling As Guardian?
Get a professional’s
opinion on why this
might be an option.
10
New Down
syndrome
law ensures
moms-to-be
greater access
to available
resources
18 July 2014
By Campbell North
Pittsburgh Post-Gazette
Ever since her birth, Chloe Kondrich
has taken her family on an unexpected
journey. Chloe, born with Down syndrome
in 2003, has now led the family up the
steps of the State Capitol.
This morning in Harrisburg, Gov.
Tom Corbett is expected to sign the
Down Syndrome Prenatal Education Act,
otherwise known as Chloe’s Law, named
after the Upper St. Clair 11-year-old and
spearheaded by her father. The legislation,
which passed with a rare bipartisan
vote, 50-0 in the Senate and 196-4 in the
House, requires health care providers to
make a woman who receives the prenatal
diagnosis of Down syndrome — a
common genetic disorder that comes with
mild to moderate developmental delays
— aware that they can receive a full range
of factual and supportive information
through the Pennsylvania Department of
Health.
Information includes physical,
developmental, educational and
psychosocial outcomes as well as
contacts for relevant resource centers,
clearinghouses, support services and First
Call programs.
One service available is the statefunded early intervention program, which
provides in-home service and therapy
through qualified specialists.
Shortly after her parents discovered
Chloe’s condition they devoted
themselves to early intervention
efforts to help her physical and mental
development and became advocates for
other children and families whom Down
syndrome affects.
Her father, Kurt, left a career in
law enforcement to work full time on
advocacy efforts and is now on the
Interagency Coordinating Council for Early
Intervention.
Her mother, Margie, credits Chloe
for helping her brother Nolan, 15, know
unconditional love and patience at such
Continued on page 10
Letter
from the
President
the
EPDSC
Board of Directors
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Kevin Neiley
Mike Carney
Chris Farrell
Nicole Geloso
Steve Neary
Teresa Romano
Bobby Lanyon
Jason Anderson
Jen Burd
Kelly Nelson
Michelle Levene
Kathi Eichman
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
Happy birthday, EPDSC! It’s hard to believe that the EPDSC is
15 years old. What better way to celebrate it than coming together
and joining us at the annual Buddy Walk.
To me, the Buddy Walk is chance to unify with those who have
a common bond. I can remember my family’s first Buddy Walk.
Olivia was just eight-weeks old. Being so new to the world of Down
syndrome, I recall being scared, full of anxiety and loaded with
questions. Most of all, I was curious. This was my first time around
dozens of individuals with Down syndrome of all ages. I studied
each individual with the intent of trying to see what the future
would hold. Would Olivia be like any of the self advocates that I was
so fixated on observing? Being a parent, I learned very quickly that
it doesn’t matter whether or not a child has a “disability” -- they are
individuals who will show us their potential.
In my opinion, Down syndrome has become individualized and
its potential is being exploited in a positive way. Individuals with
Down syndrome are running marathons, becoming entrepreneurs,
attending post-secondary education, living independently and
living life the way it is intended to be. Was it like this 15-20 years
ago? Maybe now we hear more about the potential and the
achievement because we are bombarded with media several times
a day. Or is it because this generation of parents, caregivers and
family members are realizing the abilities of those with Down
syndrome and pushing to the next level? Do we focus on the hard
issues? Absolutely. But doesn’t it feel amazing to watch, or hear
about, an individual with Down syndrome running side-by-side
with someone considered to be “typical?”
My wife, Wendy, and I recently participated in the Pennsylvania
Spartan Race. This race is not for the faint of heart. It consisted of
five miles up and down Blue Mountain Ski Resort through mud,
barbed wire, 12-foot-high barricades and many more obstacles
that test your mental and physical strength. The most gruelling and
dreaded part of this race is known as the “sand zone.” Racers are
tasked with carrying a 40 lb sand bag hundreds of yards up a steep
incline and then back down again. Your legs will very quickly feel
like they are on fire and your mind will tell to drop the sandbag
and take a break. Unless you are competing competitively, there is
no penalty for stopping, but your mental fortitude can be stronger
than what your body is telling you. So let’s get to the point: when
your child started to walk and fell down, did you give up and not
push them towards their potential? My guess is no, and if its not
a milestone, such as walking, think of another challenging task.
During the climb to the top of the peak with that 40lb sandbag, my
legs became heavy and tired, and I wanted to stop. I thought of
Olivia: if she can do things that we know scientifically are harder
for her, then why can’t I push farther?
Giving up is easy, but the reward of pushing through and
accomplishing something is a much better feeling. The amazing
people who started the EPDSC did not give up. They pushed
through and we are receiving the benefits of their hard work. They
didn’t drop the sandbag, but carried it for all of us. This is what
I now see at the Buddy Walk, hundreds of people climbing the
mountain together with our children showing us the way.
Keep climbing!
Michael B. Carney
President, EPDSC
This year marks the 15th Walk! The Buddy Walk committee is
dedicated to making this the biggest and most exciting event ever.
Come out and celebrate with us. Enjoy a day full of fun activities
for all. Our goal is to have over 1,500 participants and raise
over $150,000.00. Let us all help to promote the awareness and
acceptance of individuals with Down syndrome. Here is how you
can help:
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Mark your calendars. The 15th Buddy Walk is scheduled for
September 27, 2014 at the Valley Preferred Cycling Center/
Rodale Park.
Register your team. Pre-registration has begun! To preregister your team, visit www.lehighvalleybuddywalk.org.
Once you have signed up, ask your friends, family, neighbors
and co-workers to sponsor your team and/or join your team.
Donate a basket/item for the raffle. There is no doubt that
the Buddy Walk raffle is one of the highlights of the day.
Contact Michelle Levene at [email protected] if you
or a business would like to make a donation towards the
raffle. Please let her know by August 27th so she can begin
organizing the baskets.
The 2014
Lehigh Valley
Buddy Walk
NEEDS
YOU!
The Buddy Walk is the primary fundraiser for the EPDSC. All
proceeds will continue to support medical evaluations, family
support, social events and continued advocacy for individuals
with Down syndrome.
Check your email for more updates and information about the
Buddy Walk.
For more help on how to register or other questions, contact
Bobby Lanyon at [email protected].
The Ben Event
Members of the EPDSC attended
the aquatic competition at the Ben
Event on July 19th, 2014. The Ben
Event is a family event held the
3rd weekend in July At Macungie
Memorial Park.
The purpose of the event is to
generate funds for the Ben Yorgey
Foundation. The foundation, named in
memory of Ben Yorgey, raises funds for
scholarships to graduating high school
students with intellectual disabilities
across the Lehigh Valley. The swim
competition was just one of the many
activities over the two days of this
event. We were honored to be a small
part of this awesome event.
3
EPDSC HIGHLIGHTS
Saturday, June 21st was a perfect, summer
weather day for the annual EPDSC picnic. The
children enjoyed lots of fun and sun outdoors
with the bounce fire engine, swing set, riding
toys and bouncing balls. Our compliments to
the grill chef and all the families that shared
their desserts, side dishes and appetizers.
Special thanks to Bobby and Michele Lanyon
for hosting our picnic. We truly appreciate
your hospitality and generosity and for
opening your home and back yard to us.
EPDSC
Summer
Picnic!
Above
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The Line
We are happy to
introduce the EPDSC’s,
“Above the Line”
recognition program. The
“line” represents what
the stereotypical society
expects, or has beliefs about,
our loved ones with Down
syndrome. Being above
the line is demonstrating
the true ability of what
an individual with Down
syndrome can achieve. We’re
sure many of you witness
this every day.
Each newsletter we
will randomly select a
self advocate achieving
above the line abilities.
We encourage each one
of you to not wait for the
newsletters to be published, but to find us on Facebook
and let us know.
We are happy to recognize Olivia Carney for
being Above the Line. Olivia, age 6, just participated
in Pennsylvania’s Junior Spartan Race. Olivia and her
typical peers ran a ½ mile obstacle coarse that included:
cargo nets, mud pits, three-foot walls and an army crawl
under weighted netting. She received a medal for her
accomplishment and can consider herself a Spartan.
C-O-N-G-R-A-T-U-L-A-T-I-O-N-S!
Quinn Crispell finished up the school year in a big
way. Make that a B-I-G way! A 10-year-old, fourth
grade student at Dana Street Elementary in the
Wyoming Valley West School District, Quinn outlasted
23 classmates to win the end-of-year spelling bee. In
addition to spelling, Quinn finished the year with A’s
in science, math, English and social studies. Quinn
has been educated alongside her typical peers since
Kindergarten. WAY TO GO, QUiNN!
An Egg-cellent Business!
Below is the news story that aired on WFMZ about Alec
Mertz and his chicken/egg business:
Each week Bethlehem’s Blue Sky Café uses 12 cases
of eggs, with 15 dozen in each case. That doesn’t include
the local, farm-fresh eggs. That’s where Alec Mertz and
his free range chickens come in.
The 24 year old from Kutztown sells up to ten dozen
eggs per week to the café. “They (Blue Sky) have the
best food ever,” Alec said. Between watering, feeding,
and gathering, it’s a full time job, all done on his family’s
farm. Alec was born with Down syndrome but his Mom,
Patti said that hasn’t stopped him from pursuing his
passion. Alec has always wanted to be a farmer. “We
all have high expectations for Alec, and because of the
environment he was in, he rose to the occasion,” Patti
said.
Alec, who finished a three year program at East
Stroudsburg University, started his business last spring
at a local farmer’s market. But now every Friday he
unloads the fridge, packs the car, and delivers his eggs to
the café. A one-year farming internship with Kathy Fields
at Flint Hill Farm in Coopersburg planted the business
model seed. Both Patti and Kathy hope that Alec can
be an example of breaking perceptions of what people
think those with Down syndrome or special needs can
and can’t do. “Alec is taking his talents and creating his
business- feeding his chickens daily and taking his eggs
to the market. That provides him with independence,”
Kathy said.
So the big question is, do Alec’s eggs pass the taste
test? They’re amazingly good, fresh. I’ve never seen such
yellow yolks like that. You won’t be able to find that in a
grocery store,” Sneeringer, the owner of Blue Sky Café,
said.
More paydays are in Alec’s future; he’s expanding his
business by purchasing more chickens and hopes to have
more restaurants on his menu.
5
Special Olympics
Summer Games
Jessica Floryshak participated in the Special
Olympics Summer Games this past June at
the main campus of Penn State. Jessica was
competing in Aquatics. She received a gold
medal, 2 silver medals and a 4th place ribbon
through the 3 days of competition. Here is
Jessica and her relay team receiving their gold
medals at Penn State from the US Marines!
Caitlin Polek, Track & Field:
400M Walk - Gold; 4x100M Relay - Silver
100M Run - Bronze; 200M Run - Bronze
There is more to summer
games besides competition.
Time for cards, checking
messages and, of course, a visit
to the creamery.
3v3 Basketball team- GOLD medal winners!
Silver medal champions!
Lehigh County 3v3 basketball Olympians
Lauren Coni: Individual Basketball Skills
Another GOLD MEDAL OLYMPIAN!
Rev’n UP for DS!
Reach for the Stars held our very first
Rev’n UP for Down Syndrome Car Show
on Sunday June 22, 2014. The idea of a car
show was brought to our attention by Terry
Weilacher. Terry’s grandson, Jayden Mattuiz, is
one of our buddies; his family, known to us as
the Jay-Walkers, are very supportive of Jayden
and Reach for the Stars. The Weilacher’s and
the Mattuiz’s organized the day; the perfect
day! We drew hundreds of people and were
thrilled to have over 200 show cars, trucks,
and motorcycles! Generous donations
poured in from neighborhood companies,
families, and friends! The sky was blue, the
engines loud, the music, provided by Flamin’
Dick and the Hot Rods, was rockin’ , and the
smiles everywhere you looked made the day a
success! For more information about Reach for
the Stars please visit:
www.berksreachforthestars.org
7
SPECIAL EDUCATION IS NOT A PLACE
Avoiding Pull-Out Services in Inclusive Schools
Since the inception of inclusive schooling, many
teachers have worked to provide students with
disabilities access to both a typical education in the
general education classroom and to the individual
supports and services they need to find success. In some
instances, however, educators stumped at how to do
both may resort to pulling students out of the classroom
for short bits of instruction or even for large periods of
the school day.
Clearly, some students need special tutorials,
individualized instruction, extra skill practice, or
reinforcement of key concepts. Removing students from
their classrooms to receive these supports, however,
may not be necessary.
Giving Kids What They Need in the Inclusive
Classroom: Three Key Questions
Some educators and scholars have argued that
pulling students out of their general education classroom
is necessary if they are to get the individual attention
they need while others insist that students lose
access to general education curriculum, instruction,
incidental learning, and social skills when they leave
their classroom and that the potential benefits of pullout services are not worth the cost of leaving. Perhaps
educators do not need to debate these points; in today’s
inclusive classrooms, students can often get both an
inclusive education and personalized services. In this
article I explore three questions teachers often ask about
pull-out services and individualization and suggest a
variety of ways in which students can receive appropriate
instruction in general education classrooms.
How Can Students Get Personalized Instruction in
the Inclusive Classroom?
Many students with disabilities are pulled from their
general education classrooms because teachers feel
they need a more individualized learning experience
than can be provided in a general education setting. It is
certainly true that many students with academic needs
and learning differences require small group help or
individualized teaching strategies. However, teachers
must always consider the following questions when
planning individual instruction:
1. Does the student need to leave the general education
environment for this instruction?;
2. If the student leaves the classroom for instruction,
what will he or she gain? What will he or she lose?;
and
3. Can the student get the content or strategies he
or she needs without losing access to the general
education classroom?
If after addressing those questions, the team
determines the learner would profit from the general
education classroom experience, the following strategies
may be used to provide support: co-teaching; station
teaching; integrated therapy; independent instruction;
peer support; and study time.
Co-Teaching
When two teachers are available to deliver
instruction, roles can be differentiated, the teacher to
student ratio goes down, and instruction can be tailored
to meet the needs of a wider range of students. During
student work time, instructors can move through the
classroom addressing the needs of individual learners
and providing extra enrichment or help as needed.
Station Teaching
Using stations or center-based instruction is one
way busy classroom teachers individualize instruction
for all. This model is also often used by co-teaching
teams. During a stations teaching model, students in
the class can be instructed to visit some or all of the
stations (depending on individual goals and needs) and
teachers can design tasks at stations that give students
opportunities to tackle individual goals and learn new
skills.
Integrated Therapy
When therapists, social workers, counselors, and
other related services professionals enter general
education classrooms, all learners benefit. When Tyler,
a student with autism, began receiving his speech and
language supports in his first-grade classroom, he was
able to study the same stories as his peers while gaining
much-needed competencies in the areas of articulation
and language development. Tyler’s speech therapist also
profited from this experience as she began to function
as an instructor for a small group of six-year-olds;
she learned new ways to teach Tyler communication
skills and, after observing the classroom teacher, she
discovered new ways to teach using standards-based
and curriculum-based strategies.
Independent Instruction
In some instances, students are pulled from their
classes to learn new skills, other times they are pulled to
practice skills that have already been introduced. There
are many ways learners can direct their own learning- by
selecting work from in a teacher-created study folder, by
“testing” themselves using flashcards, individual games
(e.g., crossword puzzles, memory games); workbooks,
activity kits, or computer programs.
Peer Support
Before students are pulled out for instruction or skill
practice, teachers should always consider the possibility
of using peer support or tutoring to meet student needs.
One school responded to the need for individual support
by pairing all students with a partner for a part of the
school day that was challenging and novel- working with
technology. Both students were learning something new
so neither one had more knowledge or skill than the
other. In another classroom, teachers used cross-age
tutors to support their classrooms. Sixth-grade students
came into the fourth-grade classroom twice a week and
helped struggling readers write their own books. For
more on peer tutoring, see: http://www.ntatutor.com.
Study/Work Time
In almost every classroom, teachers designate
some part of the school day or week for individual work,
project-based work, or partner learning. If educators plan
together up front, this can be a time where any learner in
the classroom can meet with a teacher (special educator,
speech therapist, enhancement/gifted education teacher,
reading specialist, parent volunteer, community mentor,
cross-age tutor).
How Will Students Learn Functional Skills In the
Inclusive Classroom?
One reason students are pulled out is to give them
instruction they may not be able to receive in the general
education classroom. This is primarily a concern of
teachers in secondary schools, but teachers in lower
grades may struggle with it as well. When educational
teams target functional skills as a priority, a number of
questions should be asked and answered:
What functional skills are critical for this learner’s
success?
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Where can these skills be taught/learned?
If we pull students from coursework to learn
functional skills, what do we potentially give up?
Do we need to give up academic instruction or
typical school experiences to get functional skill
instruction?
There are several ways to address functional skills.
Perhaps the most obvious way to get students the skills
they need is to explore ways for students to get this
practice in typical school coursework or to become very
inventive with a student’s schedule. For instance, one
18-year-old high school student needed to learn money
skills so he spent two high school periods working in
the school store with other students from his business
and marketing class. Another student who needed a lot
of assistance with self-care (and enjoyed athletics), was
scheduled for two different physical education classes:
swimming and volleyball. She not only learned two lifelong leisure activities but was able to receive instruction
in dressing, applying make-up, washing, and other
self-care skills on a regular basis. She also learned how
to engage in relaxing stretching exercises as a way to
manage stress.
What Will Students with Disabilities Do During
Traditional Whole-Class Instruction?
Teachers are often at a loss of how to support some
students during lectures and whole-class discussions.
Recognizing how difficult it is for some students to sit in
their seats and actively listen for fifteen minutes to an
hour or more at a time, teachers may pull students out
to engage in learning experiences that are more active,
meaningful, and geared to the student’s individual goals.
Because so many students with disabilities do
struggle to participate during a traditional lecture format,
this approach certainly seems reasonable. It ignores,
however, a larger educational problem: many students
(those with and without disabilities) cannot successfully
attend to whole-class discussion and need opportunities
to move, share, interact, and process in order to learn.
If students with disabilities are learning in classrooms
where the predominant teaching model is lecture and
whole-class discussion, then the teaching team needs
to brainstorm new ways of providing instruction to all
students instead of identifying those who will most
obviously struggle and leaving the rest to navigate the
lesson on their own.
Consider the success one secondary teaching team
experienced when they made small shifts away from
whole-group instruction (Kluth, 2010). Anne did not have
a reliable communication system and she often vocalized
audibly during classes. Her social studies teacher was
frustrated with her presence in the classroom; he was a
popular and animated instructor but he had been using
the same lessons for several years and was not prepared
to make changes “for one student”.
A special educator, therefore, offered to work with
the history teacher to create opportunities for Anne
to participate in his lessons. The class was studying
Vietnam; in order to teach this particular unit, the teacher
was using a history textbook, a range of popular films
(e.g., Apocalypse Now, Born on the Fourth of July), and
newspaper clippings from the late 1960s and early 1970s.
While the materials were varied and interesting to most
of the students, the teaching style was not. This dynamic
instructor, although very funny and entertaining,
delivered instruction through a lecture format every day.
While students did have opportunities to ask and answer
questions during the lectures, they were not able to
interact with each other, explore materials in-depth, solve
problems independently, or create products. While some
students could stay attentive during a lecture format,
many others, including Anne, could not. By the end of
the daily lecture, many students were falling asleep,
writing notes to friends, or staring out the classroom’s
large wall of windows.
The special educator suggested that once a week,
while the teacher was showing one of the movies,
students would be offered an alternative activity. The
teachers decided to collaborate on the activity. One
teacher, they decided, would stay back in the classroom
and supervise the movie viewing while the other teacher
would accompany a small group of students around
the high school, seeking faculty, staff members, and
other adults in the school who would be willing to be
interviewed about their memories of the Vietnam era.
For the first few weeks, the special educator took the
students on the school tour; five students including
Anne marched through the halls, visited the lounge,
and even canvassed the main office looking for family
members who might be visiting the school. Since
Anne could not speak, her job was to operate an audio
recorder (a new skill), introduce the group to the adult
(via a communication card reading “We are conducting
a history project related to the Vietnam War. We are
interested in interviewing people who remember
the Vietnam era. Do you mind if we ask you a few
questions?”). Anne also participated in the interview
process by handing question cards to the adults being
questioned.
Both educators were pleased with the unit and the
social studies teacher claimed that all of his students
learned more, even those who could “handle” the
lectures. He saw more complexity in all of his learners
and felt that the interview activity allowed him to
tackle more complicated topics and give students more
opportunities to think critically. He didn’t have Anne in
any of his classes the next semester, but he did continue
to use the interview project as a central focus of the unit.
Conclusions
Too often students with disabilities are marginalized.
This perspective has been perpetuated through the
use of the pull-out system. Pull-out services reinforce
differences and interrupt the typical experiences
necessary for social skill acquisition, life-skill learning,
and scholastic success. By creatively considering a
variety of ways to personalize instruction in classrooms,
teaching functional skills in the context of general
education classes, and providing a wider range of
instructional options for all students, however, educators
can minimize pull-out services and give students access
to social experiences, collaborative opportunities, and
academic curricula.
“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.”
9
Continued from page 1
a young age. “I don’t want any expectant mother to
feel that pain or confusion when they get a prenatal
diagnosis. I want this law to give women hope,” Mrs.
Kondrich said. “Chloe was a blessing.”
Kishore Vellody, medical director of the Down
Syndrome Center at Children’s Hospital of Pittsburgh
of UPMC, echoed Mrs. Kondrich’‍s sentiment, saying
he sees the necessity of the new law, which will
outline physicians’ responsibilities in delivering the
news of a Down syndrome prenatal diagnosis.
“Published data shows that less than half of people
felt like their training was accurate in communicating
prenatal diagnosis,” he said. “Even in my med school
textbooks, a lot of things we learned about Down
syndrome was inaccurate because it takes so long to
have them updated.”
Within the past 30 years, the increase in
information and standard medical care has been
dramatic and is mirrored by the increase in life
expectancy for people with Down syndrome, from
25 in the 1980s to 60 and beyond now. “Our goal in
medicine is to make sure people receive balanced and
accurate information when they make decisions about
health care,” Dr. Vellody said. “That’s why we support
endeavors to help expectant parents.”
Mr. Kondrich spearheaded the advocacy effort
for the legislation in September after discovering
that more than 90 percent of women terminate their
pregnancy after receiving a prenatal diagnosis for
Down syndrome. Down syndrome occurs when
someone is born with a full or partial extra copy of
chromosome 21 and results in distinct physical traits,
increased risk for certain medical conditions and mild
to moderate cognitive delays. However, “the more I
interact with someone who has Down syndrome, the
more I think I am the one who has one chromosome
less, instead of them having one extra,” said Dr.
Vellody. “They tend to be loving, caring and forgiving
— features we are missing a lot in general society.”
The Kondrich family agreed. Down syndrome as
a diagnosis doesn’‍t limit what Chloe can do. “She
met Gov. Corbett and read to him. I mean she helped
change a state law, helped make it a better place,”
Mrs. Kondrich said.Chloe has also been reading since
age 3 and reads at the same level of her sixth-grade
peers at Boyce Middle School.
State Rep. Jim Marshall, R-Big Beaver, prime
sponsor for the act, said, “We hope this will raise
awareness to parents who may get the diagnosis and
be initially afraid of what the result will be. I think
it will raise awareness that their kid is going to be
different, not imperfect. There really isn’t anything
more perfect than a happy child.”
After the act takes effect today, the Department
of Health will have 60 days to add to and update its
information available to the public.
#####
National Down Syndrome
Congress Annual Convention
2014: “Setting the Pace”
“So how was the convention?” my husband asked as
I walked through the door Sunday at 10pm. Based on his
past experience asking me that question after a conference
or class he expected to hear a highlight or two and then we
would agree to sit and watch some mindless tv before bed.
But instead I excitedly proclaimed “It was amazing! I feel
renewed and energized and want to start several new programs
in the Lehigh Valley.” I went on like this for at least an hour
telling him about the Pearce family and their amazing story
of acceptance and perseverance, Paula Kluth an educator
passionate about inclusion, Dr. Capone and his work in the
dual diagnosis of Down syndrome and Autism, and about all
of the amazing families who shared in my experience.
The convention was unlike any other I have ever
attended. The atmosphere was relaxed and truly felt as the
NDSC appropriately promotes it as “a family reunion.”
Self-advocates, parents, siblings, professionals, and family
members all meeting together to share ideas, stories, and
support. Each day I listened to experts from all over the
country share their work in a variety of areas. In between
sessions, I explored the vendor hall that included: selfadvocate business owners, post- secondary education
programs and adult life communities. I watched videos,
gathered resources, and even got to “shake it” as a new friend
instructed me to at the 321 Dance. While all that went on
in just three days, one would think I would be exhausted.
However, the energy at the convention was so powerful that
it was almost impossible to come home and not excited and
ready to explore new possibilities in our area.
If you have not attended a convention, I strongly
encourage you to go at least once. I promise you that it is
worth the trip. In the meantime, here’s how you can access all
of the convention sessions. The conference information will be
available for one year:
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Visit http://www.conferencemedia.net/store/stores/
ndsc/
Click on Indianapolis Conference
Click My Account
Login email: [email protected]
Password: epdsc2014
On the left side click access media purchases
I want to thank the board for the opportunity to attend the
conference. If anyone is interested in hearing more about it,
please call the Center and I will be happy to share more about
the experience. ~Kelly Nelson, MS, OTR/L
Become Your Sibling’s Future Guardian
Provided by Robert D. Touzeau, LUTCF, CLU, ChSNC, a
Financial Services Professional and Special Care Planner(1)
with MassMutual Eastern Pennsylvania(2), courtesy of
Massachusetts Mutual Life Insurance Company (MassMutual).
Considering a Guardianship
Guardianship is the legal right given to one person (the
“guardian”) to protect and manage the personal care, or
finances, or both, of another person (the “ward”). The exact
duties will be spelled out in the letters of guardianship for
that case and will vary according to state laws. Guardianship
can be costly and complex, because it means a lot of
involvement with the legal system.
Establishing a guardianship can be a difficult step for
families, because it basically means declaring the ward
incompetent to manage independently in one or more
areas. Experts suggest that individuals with special needs
manage as much as possible on their own, with others to
help with specific things. However, when a simple power of
attorney or letter of intent will not suffice, a guardianship
can be an important safety net. Financial services
professionals and attorneys with special needs experience
can help you understand the guardianship options available.
Should the Guardian Be a Sibling?
A sibling is often the best choice of guardian for many
reasons. A sibling knows the challenges and joys the
relationship can bring. Also, siblings are usually close in
age. A younger guardian means there’s a better chance for a
long relationship because the guardian’s age-related health
issues, as well as lifestyle adjustments at retirement, are
less likely to be factors.
In addition to age and finances, the family’s goals
regarding the quality of life of the child with special needs
should be discussed. Even if the guardian will be a sibling,
creating a letter of intent, which outlines medical, financial,
social, and personal facts about the person to be cared for,
is recommended. It helps to eliminate questions or doubts
that might arise when a new guardian steps in.
Conversations about choosing a guardian should be
open and ongoing. When parents (or siblings, or aunts,
or whoever the guardian may be) are trying to choose a
successor guardian, they shouldn’t assume they know who
would want, or not want, the responsibility. Ask. And be
aware of how the passing of time might make the perfect
choice of guardian not so perfect anymore. Keep revisiting
your decisions. Always be prepared for the changes life
brings by having a successor guardian lined up and an
alternate in mind.
Financial Concerns for Guardians and Their Wards
Note that while a guardian makes decisions about
finances, medical care, or other services for the ward,
he or she is ordinarily not responsible for providing that
care or those services. In fact, however, and particularly
when the guardian is a close relative of the ward, financial
responsibility ends up falling to the guardian, even if it is
not part of the legal contract. Parents of a child with special
needs, when planning to name one of their other children as
guardian, should also think carefully about their estate plan.
Leaving assets directly to the child with special needs might
jeopardize that child’s eligibility for government benefits, for
example. Also, any large sum left directly to an individual
could have tax implications. Leaving assets to the sibling
guardian with the expectation that it will always be available
to the child with special needs might also backfire—if, for
example, the guardian dies or divorces.
An attorney and a financial services professional
experienced in the field of special needs should be
consulted to help develop an appropriate plan. They might,
for example, help the family set up a special needs trust for
the ward. The trust could be the beneficiary of life insurance
policies and other assets upon the death of the child’s
parents.
Do What’s Right for Your Family
No two families are alike, but every family benefits
when they communicate. Having a relationship with a
financial professional who’ll follow your family through
years of changing situations can be a big plus. Building a
financial strategy that can be adaptive to changes makes life
a little easier.
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.
(1)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.
(2)Local sales agencies are not subsidiaries of MassMutual
or its affiliated companies.
© 2013 Massachusetts Mutual Life Insurance Company 011110001
SC3105
CRN 201505-172358
SPECIAL NEEDS
REQUIRE SPECIALCARE
SM
When you’re ready, we’re here to help. MassMutual’s
SpecialCare SM program provides access to information,
specialists and financial products and services to help
families facing the financial responsibilities of raising a
child with a disability or other special needs. MassMutual
Eastern Pennsylvania is the Official Special Needs Planning
Organization for the Eastern PA Down Syndrome Center.
To learn more, contact:
Robert D. Touzeau, LUTCF, CLU®, ChSNC
Special Care Planner
3701 Corporate Parkway, Suite 320
Center Valley, PA 18034
610-798-2567
[email protected]
www.EasternPA.MassMutual.com
LIFE INSURANCE + RETIREMENT/401(K) PLAN SERVICES
DISABILITY INCOME INSURANCE + LONG TERM CARE INSURANCE + ANNUITIES
MassMutual Financial Group refers to Massachusetts Mutual Life Insurance Co. (MassMutual) and its affiliated
companies and sales representatives. Local sales agencies are not subsidiaries of MassMutual or its affiliated
companies. CRN201510-177392
11
Mark Your Calendar
--> 2014 Lehigh Valley Buddy Walk <-•
•
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Saturday, September 27, 2013
2:00 PM
Rain or Shine
Lehigh Valley Cycling Center, Breiningsville
Register at:www.lehighvalleybuddywalk.org
2014 Down Syndrome
Education Conference
Friday, October 17, 2014
La Plata, Maryland
For information and to register, please
visit the web site at:
http://www.fabulouswith47.com/Events.html
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
Down Syndrome Awareness Day at the
Philadelphia Zoo
Sunday, September 14, 2014
For additional information and to register, please
visit the T21 Club of the Delaware Valley web site at:
http://www.t21clubofthedelawarevalley.org/Events.html
Reach For The Stars 3rd Annual Buddy Walk
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Sunday, October 12, 2013
12:00-4:00 PM
Daniel Boone High School, Birdsboro, PA (Berks
county)
Register at: www.ds-stride.org/berksbuddywalk