Summer 2016 - Eastern PA Down Syndrome Center

Summer 2016
The Thrill of a College Acceptance Letter
Event Highlights
It is a busy time of year
at the EPDSC! Find out
what’s been happening.
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Housing Initiative
A dedicated group of
families is spearheading
change for new options.
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By Patti Mertz
The Buddy Walk Rocks!
Find out why you should
be a part of the EPDSC’s
annual fundraiser.
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Camp PALS
Read about great
experiences from some
of this year’s campers.
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Miss Amazing 2016 Pageant
“Queens Today, Leaders
Tomorrow” is their theme
for empowerment.
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FORE!
Registration is open for
the 7th Annual EPDSC
Golf Tournament.
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Many young adults with intellectual
disabilities (ID) leaving high school are
preparing to take on adult roles that establish
personal and social relationships. These
relationships enable them to participate
actively and independently in the community
and workforce, while helping define their
quality of life.
The mission of the EPDSC is to equip
families and individuals influenced by
Down syndrome with the latest medical
advancement, social, emotional and
educational support in order to maximize each
individual’s potential. We believe that everyone
has the right to enhance their learning and
realize their personal potential through higher
education.
Too often, students with ID are
discouraged from considering college for their
future. Research indicates youth with ID who
participate in postsecondary education (PSE)
are 26% more likely to have a paid job and
earn 73% higher wages. The growth students
experience in college can be applied to a
variety of areas such as academic and personal
skill-building, employment, independence,
self-advocacy and self-confidence.
In 2005, several Eastern PA Down
Syndrome Center (EPDSC) staff members
had sons/daughters emerging as transition
students (age 14-21) with a desire to
continue their learning alongside their peers.
Unfortunately during this time, there were no
institutes of higher education accepting new
students with ID in the state of Pennsylvania.
Adhering to the Center’s mission, These highly
motivated individuals and parents began
breaking down societal limitations based upon
old paradigms, perceptions and stereotypes.
A commitment was made to develop
a program in Pennsylvania after traveling
across the country to visit existing PSE
programs. In collaboration with Dr. Domenico
Cavauiolo, a professor in the Special Education
Department at East Stroudsburg University
(ESU), the EPDSC worked tirelessly to create
the Career Independent Living and Learning
Studies (CILLS.) This non-degree, certificate
program operates on a three year cycle.
Coursework and learning experiences are
instructed by the Coordinator of the program
with oversight by Dr. Cavauiolo and faculty
in the Department of Special Education
and Rehabilitation. The program would not
have been possible without a very generous
donation awarded to the EPDSC, which
financially supported the CILLS program for
Continued on page 9
the
EPDSC
Board of Directors
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Mike Carney
Nicole Geloso
Steve Neary
Dr. Teresa Romano
Bobby Lanyon
Jason Anderson
Kelly Nelson
Sue McGorry
Kathi Eichman
Erik Weiner
Sandro Micocci
Ryan Murphy
At large: Dr. Donald Levick
Officers
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Mike Carney, President
Bobby Lanyon, Vice President
Steve Neary, Treasurer
Dr. Teresa Romano, Secretary
Staff
• Don Levick, M.D., MBA, Medical Director
• Renee Morrow-Connelly, D.O., Pediactrics
• Scott Rice, M.D., Pediatrics
• Andrea Meeker, MS, OTR/L
• Kelly Nelson, MS, OTR/L
• Patti Mertz, Center Coordinator
• Maria Floryshak, Center Coordinator
• Anne Marie Dolinish-Meltzer, Clinic
Coordinator
• Kathleen Christy, Clinic Coordinator
• Melissia Baker, Development & Events
Coordinator
• Claire Dainese, Office Assistant
• Sherrill Cormack, Newsletter Editor
• Diana Santoro, Newsletter Design
Letter from
the President
A funny thing happened when Olivia was born, I swore that
I was not the type of parent who could raise a child with “special
needs.” Well, here I am nine years later raising this child not as
a child with special needs, but as my daughter. How many of us
felt this way in the beginning or even how many of us still feel
this way? Was it because of fear? Fear is an interesting four letter
word. Defined, fear is an unpleasant emotion caused by the belief
that someone or something is dangerous, likely to cause pain
or discomfort. You see, we spend most of our lives trying to live
as pain-free as possible, trying to get as much as we can, trying
to do as much as we can do, trying to make as much as we can
comfortable. Generally speaking we avoid confrontation, we stay
away from things that might hurt, we limit the challenges, we go
for a walk because running is too hard and we take the escalator
because the steps are annoying.
But the truth is, when we step outside of our comfort zone,
look fear in its face, we get a chance to see what we are really
made of. And only then do you get a chance to appreciate this
journey. Yes, I know raising a child with special needs can be full
of ups and downs, but couldn’t you agree that the excitement and
joy completely outweigh the fears? Is fear really a disguise for
excitement and we decide on how we want to perceive it?
Part of the EPDSC’s mission statement is to provide social
and emotional support to all our families. We accomplish this
by providing the opportunities such as the Buddy Walk, to give
our families the chance to meet and talk to one another. There
is so much powerful knowledge throughout the EPDSC and our
members. It is, however, up to you to take advantage of these
opportunities. As we approach our 17th annual Buddy Walk, there
will be new families as well as experienced families. If you come
across a new family, introduce yourself, tell them about your child
and offer any assistance that you can.
To anyone reading this that thinks raising your child is above
your parental pay-grade, I say think again. You are doing it, and
you are doing a great job at it. We are not the first and will not
be the last. Cherish the accomplishments and push beyond the
roadblocks. With the help of my wife, breaking down the fear and
parenting Olivia through her journey is perhaps one my greatest
accomplishments. I know I am not alone in feeling this way and I
ask that you give yourself a “pat on the back” for a job well done.
After all, in life, if it doesn’t challenge you, it won’t change you.
Be well,
Michael B. Carney
President, EPDSC
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Here’s what’s new!
Severe Sleep Apnea Research
At a recent DSMIG meeting, the hypoglossal nerve stimulator research was discussed. As
you may know, there is a now a multi-center
clinical trial to test the device in a larger cohort
of patients. Children with Down syndrome,
ages 10-21, who have had a adenoidectomy and
tonsillectomy but who still have severe sleep
apnea and who cannot tolerate CPAP therapy
are eligible. More details available at http://
www.massgeneral.org/children/research/
down-syndrome/hypoglossal-nerve-stimulator-study.aspx.
Funds are available to defray costs for
patients and their families to travel to one of
the participating centers. If you have a patient
who might be a good candidate, please feel free
to contact one of the following site principal
investigators.
Dr. Chris Hartnick (Christopher_Hartnick@
meei.harvard.edu)
Dr. Nikhlila Raol ([email protected])
Dr Carissa Wentland (carissa.wentland@
gmail.com)
Dr. Stacey Ishman (Stacey.Ishman@cchmc.
org)
Dr. Jeff Simons ([email protected])
Meet EPDSC’s New Intern!
Hello everyone! I would like
to introduce you to our Marketing
and Events Coordinator Intern,
Ms. Jinsely Ariza. She has been
our EPDSC intern for the past
month and has been working on
promoting events, coordinating
entertainment for the LV Buddy
Walk, and building relationships
with local businesses to help our
annual fundraising goal.
Jinsely Ariza is a recent
graduate of DeSales University
with a degree in Marketing and
Business Administration. She
has been living in the Lehigh
Valley with her family and yorkie
for over 17 years. She enjoys
dancing, traveling the country,
planning events, baking, buying
stationary products, and creating
content for social media.
Her career goal now is to
find a job in the healthcare field
then she will head off to graduate
school for a Master’s degree
in Healthcare Administration to
achieve her dream of becoming a
Heathcare Administrator.
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The weather couldn’t have been more perfect
for 100 members of the EPDSC to spend an
afternoon together on Saturday, July 9th at the
Annual Summer Picnic at Macungie Memorial
Park. The EPDSC “extended family” had an
opportunity to catch up and meet some new
friends, while the children enjoyed time on the
playground.
What a wonderful feeling it was to have so
many friends participate in the picnic. Next
year, put your lei on, and get ready to do the
limbo...
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EPDSC
Summer
Picnic!
Lehigh Valley Baseball!
What is baseball without popcorn, peanuts, hot
dogs and the seventh inning stretch? The Lehigh
Valley Iron Pigs have all that and much more.
Can’t find much more happiness than enjoying
America’s pastime favorite game. The EPDSC’s
dedicated fans brought their hats, gloves
and blankets and enjoyed a night of Iron Pigs
baseball on June 18th at Cocoa-Cola Park. Perfect
summer weather was in place as the fans cheered
on the home team to a win! The night ended with a
spectacular fireworks display.
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update: “The Housing Initiative”
When our children were born, we fought for them
every step of the way. We advocated for their education
in a classroom with their peers. We developed a
three year post-secondary education program at East
Stroudsburg University. We advocated for their inclusion
in the community and we advocated for competitive
employment. But have you ever wondered where your son
or daughter would live when they become an adult? These
issues and questions are hard enough for our “typical”
children. But what about those that have an intellectual
disability?
In September of 2014, the Eastern PA Down Syndrome
Center asked that same question and charged a small
group of parents to come up with a creative living option
that would allow our adults with intellectual disabilities to
live independently in their community. Patti Mertz, Maria
Floryshak, Bobby Lanyon, Anne Marie Dolinish Meltzer, Bill
Meltzer and Cindi Lo volunteered for this assignment.
Under the leadership of
Anne Marie Dolinish-Meltzer, this
group developed the following
Mission Statement that would:
“Assist individuals with disabilities
in attaining a safe, nurturing
and supervised creative living
option and to support individuals
in becoming independent and
self-fulfilled while experiencing
meaningful relationships and
activities in their communities.”
We started by reading the
book “Moving Out”, a Family
Guide to Residential Planning for
Adults with Disabilities. We spoke
with a number of organizations
in Pennsylvania and elsewhere
that provide various housing models for individuals with
intellectual disabilities. We visited the “Trinity House” in
Bloomsburg, PA where a vacant church was “repurposed”
by converting it into apartments for 19 individuals with
intellectual disabilities. If you were able to attend our
Home, Health and Future Conference in May of this year,
you probably heard the story of the “Trinity House!”We
have spoken with two of our State Representatives who
are very excited and supportive of our initiative. We have
met with an architect, an attorney and a realtor who have
offered their services in an effort to assist us in developing
a creative living option for our adults.
Over the past 18 months, we have come to realize that
housing that gets developed through the public domain
can be costly, is often complex and usually takes a long
time to see it through. Financing in the public domain is
typically through Federal dollars that are administered by
the States. Pennsylvania has established the Pennsylvania
Housing Finance Agency (PHFA) to disperse these funds
that are made available each year. This year, PHFA received
111 applications requesting $147 million dollars for various
housing projects. This year PHFA awarded $42 million
dollars for 39 of those projects.
While financing for housing through the PHFA is very
competitive, the good news is that there are consulting
firms and housing authorities that are willing to work with
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us and help guide us through the application process.
In July we had a meeting with Mullin, Lonergan and
Associates, a housing and community development
consulting firm. We also met with the Executive Director
of the Lehigh Valley Housing Authority. Both believe our
mission is certainly a worthy one and that a path forward
for our mission is possible.
While most projects are funded through the public
domain, those that have some private financing have a
somewhat easier path going forward.
So what exactly would this creative living option look
like? After much discussion (and debate) we came out with
the following seven key attributes:
• Must be in a safe location
• Easy access to public transportation
• Close proximity to stores, banks, pharmacies, restaurants,
movie theaters, churches, etc.
• On site manager 24 hours a day
• On site community/recreation room
for residents
• Ample parking for service providers
• Friendly, inclusive neighborhood
This new creative living option
would facilitate
the inclusion, self-determination
and independence of its residents.
It would provide opportunities to
increase and enhance independent
living skills. It would strive to realize
the full potential of its residents.
It would seek the transformation
of society’s misconception of the
abilities, capabilities and persons
with intellectual disabilities.
This new creative living option would not be a group
home. It would not dictate friendships or relationships. It
would not direct lifestyle or make decisions. It would not
mandate participation in any program.
As previously mentioned we are in the process of
considering a number of properties in the Lehigh Valley. We
are considering existing properties that can be repurposed
or demolished such as a former warehouse or mill and we
are also looking at new development opportunities. We
are looking at a project consisting of 20-24 units but would
consider partnering with another organization on a larger
project.
We have also reached out to the Autism community
and have expanded our group to include Trieste Kennedy
and Mimi Ludwig. We are always looking for new ideas
and suggestions, but more importantly new people to help
develop these new ideas and suggestions. Please do not
hesitate to contact Anne Marie Dolinish-Meltzer at 610-3958586 with any recommendations.
Launching of the Pennsylvania
Down Syndrome Advocacy
Coalition (PDSAC); Seeking Your
Input and Assistance
We are pleased to announce the formation of the
Pennsylvania Down Syndrome Advocacy Coalition
(PDSAC). Through this statewide coalition, parents
stakeholders and self-advocates within the Down
syndrome community are coming together to establish
an advocacy coalition that will focus on informing and
influencing decision-makers at the community, state and
national levels about priority issues important to our
community.
For the coalition to be effective, we will need to focus
our efforts on issues important to the Pennsylvania Ds
community and have active participation by advocates
across the state. We would appreciate your completing
a survey to help us identify focus areas and direction for
the coalition, in addition to finding individuals interested
in participating within the coalition.
Thank you in advance for your assistance. Feel
free to forward this email to other individuals within
Pennsylvania. Help us strengthen the voice of the Down
syndrome community in Pennsylvania.
Link to survey: https://fs16.formsite.com/apha2/
PADSAdvoc/index.html
Please complete the survey by September 1, 2016.
Also visit the coalition website at www.pdsac.org to learn
more about the coalition. You have the opportunity to
shape the work of PDSAC. If you have any questions feel
free to contact us.
PDSAC Co-chairs
Mitchel Rothholz
Harleysville, PA
[email protected]
Erik Weiner
Quakertown, PA
[email protected]
Vision Statement:
All individuals in Pennsylvania with Down syndrome will
achieve equality, access and inclusion.
Mission Statement:
Pennsylvania Down Syndrome Advocacy Coalition
(PDSAC) seeks to improve, through legislative, regulatory
and policy advocacy, the quality of life for all individuals
with Down syndrome, regardless of age, at the
community, state, and national levels.
To achieve its mission, PDSAC focuses on:
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Improving Education Opportunities for individuals
with Down syndrome.
Improving Health Outcomes and Quality of Life for
individuals with Down syndrome.
Creating an Economic Future for individuals with
Down syndrome.
Strengthening community relations for and
understanding of individuals with Down syndrome.
Engaging and informing the Down syndrome
community regarding legislative, regulatory and
policy developments.
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Camp
If you do an internet search for Camp PALS, you
will see that their programs “provide a place for
teens and young adults with Down syndrome and
their peers to have fun, grow as individuals and build
transformative friendships.” Programs are currently
located in 10 different locations across the USA. Eight
members from the EPDSC attended Camp Pals this
year:
Philadelphia – Olivia Neiley and Tess Eichman
Poconos – Brennan McCarthy
NJ – Lauren Coni, Briana Hall, Jenna Hawkins
Georgetown – Bryan Meltzer
New Rochelle – Sam Heller
The “Green Team” is Olivia’s team and they were
together for many fun activities including: crafts,
sports and, of course, karaoke! There were field trips
to Ocean Beach, The Franklin Institute, the movie
theater and some serious arcade game time at Dave
and Busters.
This experience is something that cannot be
measured. Olivia looks forward to this week every
year and is already talking about next year.
Following are two stories from campers Olivia
Neiley, Brennan McCarthy and their families.
Olivia at Camp PALS, Philadelphia
This year was Olivia’s second year at Camp PALS,
Philadelphia. Imagine arriving at camp with your
friends shaking cheerleading pompoms in a posterdecorated convertible and being greeted by hundreds
of camp volunteers and participants. Excitement to
the Nth degree.
What stands out is how the counselors all say
that this week changes their lives too. It brings a
whole new meaning and outlook about people with
disabilities. This is how Camp PALS is trying to change
the world. We highly recommend Camp PALS for your
son or daughter to attend at least once. Just don’t be
surprised when they say they want to go back next
year.
Brennan at Camp PALS, Poconos
Off to the dorms, where the hallways are all
decorated. Olivia met her counselor, Emma, with
whom she shared a dorm room. By the end of the
week, they are more than camper and counselor: they
are Best Friends Forever.
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Our car slowly rounded the corner into the
University of Scranton’s parking lot, edging toward
a mob of student counselors in bright t-shirts.
Suddenly, one student ran up to our car and yelled,
“What’s the camper’s name?” “Brennan!” we shouted
back. He then shouted towards his fellow counselors,
“It’s Brennan!” The counselors erupted in cheers and
chanted, “Brennan, Brennan, Brennan.” They quickly
surrounded the car, reaching in Brennan’s window
to give him high-fives as we carefully navigated the
tunnel of his “fans.” We had arrived at Camp PALS,
Poconos.
Continued from page 1
We parked nearby and were immediately
greeted by counselors in red t-shirts. We learned
that Brennan was Team RED for the week. Brennan
met his counselor, Travis, who had already spoken
to Cheryl by phone the previous week to learn
Brennan’s background. After a quick visit with the
Medical staff, we were whisked away to his dorm
room, engulfed in decorations with a Pokemon
theme. Brennan loves Pokemon.
After unpacking his luggage, Brennan and Travis
re-joined the arrival group welcoming the next
campers and said “goodbye” to Mom and Dad for
the week.
The first evening, the campers enjoyed an ice
cream social where they had the opportunity to get
to meet each other, their teams and the counselors.
On Monday morning, the parents got to see what
the campers were up to via the Facebook pictures
the staff posts each day.
Brennan enjoyed a whirlwind of his favorite
activities including: softball, karaoke and a yoga
class. He even tried his hand at painting, creating a
fan page of the Yankees, his favorite team.
Brennan also performed on stage, his version of
Justin Bieber’s hit song, “Love Yourself.”
But the fun just doesn’t end. The campers all
went to a minor league baseball game, a waterpark,
a drive-in movie theater and a state park. The
highlight of the week is the final evening’s semiformal dance.
On the last day, Brennan will say his goodbyes
to all of his new friends and give sincere thanks to
all the volunteer counselors. Brennan will definitely
be back next year!
You can view additional fun activities on
Youtube. Just do a search for Camp PALS.
the first three years.The CILLS program is designed to
provide a learning experience to individuals with ID in
a campus environment. Consequently, the life and work
skills gained are amplified by the daily encouragement of
being in a university setting. The CILLS program fosters
a high-quality learning experience, in addition to helping
individuals working towards achieving their goals
of being included in the community, by establishing
friendships and building self-confidence.
The program participants have the opportunity to
take various classes to meet specific individual needs,
to pursue traditional areas of interest available to all
university students, and to engage in practical and
community work through internships. It includes living
in off campus housing and learning to build relationships
with their non-disabled peers on campus. The CILLS
program promotes self-advocacy and utilizes mentors
and peer supports to accommodate the different learning
abilities of participants in all domains.
The EPDSC and many other advocates are
continually working to lay the groundwork to change
attitudes and redefine support to people with ID. As a
result, more and more institutes of higher education
are opening their doors to accept these capable,
independent and productive citizens.
Since college is a viable option for many students
with ID, families want to know how to collaborate with
their IEP team to plan for a post-secondary experience.
The key is to start planning early and be prepared! Some
things you may want to consider include:
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Inclusive education and access to curriculum
Literacy skills (reading, writing, math)
Self-advocacy and independent living skills
Communications and social skills
Paid jobs while in school
Research and visit existing programs
IEPs and transition plans should reflect goals
in these areas and postsecondary outcomes of
college, work and independent living
We are proud of our EPDSC members/students
who were the first graduating class from the CILLS
program in 2013: Lauren Coni, Jessica Floryshak,
Sam Heller, Bryan Meltzer, Alec Mertz and Matthew
Paladino. Congratulations and THANK YOU for being
the inspiration to many others! There are currently 249
existing programs in the United States offering different
types of learning opportunities. It is with tremendous
gratification that I can report the CILLS program at ESU
has 24 students enrolled for Fall 2016. Please enjoy the
video below capturing Rachel’s enthusiasm as she reads
her acceptance letter from ESU! CONGRATULATIONS
Rachel and we wish you the best!
--> http://www.usatoday.com/videos/news/
humankind/2016/03/31/82462808/
To locate additional information regarding
postsecondary programs, go to www.thinkcollege.net.
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Queens Today
_____________________________________________________________________
Leaders Tomorrow
­ Talent:­ Kelsey performed her favorite solo
dance routine to the song, “Lights, camera and
action.” She rocked the stage with her dance
moves.
Kelsey Anthony participated in the State of
Pennsylvania Miss Amazing Pageant in March 2016
at Moravian College in Bethlehem. Kelsey was
named Pennsylvania Miss Amazing in the teen
division of the pageant and qualified to attend the
National Miss Amazing in Chicago in June of 2016.
Miss Amazing is a place where girls and
women with disablilites have the power to define
themselves on their own terms, to set new goals
and to further develop life skills. Each skill area has
its unique purpose and ultimately contributes to an
empowering experience for all. Kelsey participated
in four skill areas: ­
Interview:­Kelsey exercised her communication
skills and interview skills during a one-on-one
conversation with three judges.
Introduction: Kelsey introduced herself to the
audience with her age, her state and some facts
about herself. This skill area offered Kelsey a chance
to exercise public speaking skills and to share
her strengths and ambitions with the nationwide
audience.
Presentation in evening wear: Kelsey took
the stage in her favorite evening wear attire and
showed her confidence and self­-assurance with
body language and non-verbal communication.
Kelsey confidently took the stage in her beautiful
black evening wear and while modeling her dress,
threw kisses , winks and hearts to the judges and
audience. She was amazing.
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The national Miss Amazing offered Kelsey
valuable opportunities to set higher expectations
for herself to become stronger and more
determined. Kelsey had the honor of representing
girls and women in the state of Pennsylvania.
Miss Amazing helped Kelsey show the world
that she is a ambitious, capable and multi-faceted
individual. While Kelsey did not walk away with the
national teen title she did walk away with the most
precious and valuable awards that you can walk
away with from The Miss Amazing Pageant which
are:
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A sense of purpose
One or more new goals accomplished
Increased focus on her strengths and
abilities
New friends
Improved social and communication skills
This was such a wonderful experience for
Kelsey that she will forever remember and cherish.
Saturday
September 24, 2016
2 - 6 PM
Valley Preferred Cycling Center
Breinigsville, PA
Buddy Walk Information
The 17th Annual Lehigh Valley Buddy Walk will occur at the Valley Preferred Cycling Center
in Breinigsville, PA. This is a 1 mile fun walk with an after party!!! Entertainment will include
Disney princesses, Star Wars characters, DJ from Bar None Entertainment, trackless train,
petting zoo, pony rides, bounce house, and much, much more!
Buddy Walk Schedule
2:00 PM
3:00 PM
3:10 PM
3:30 PM
6:00 PM
Onsite Registration/Check-In
Opening Ceremonies
Begin Buddy Walk
Entertainment
End of event
Online Registration at www.lehighvalleybuddywalk.org
About the EPDSC
The Eastern Pennsylvania Down Syndrome Center is dedicated to the physical and mental wellbeing of ALL persons with Down syndrome and their families.
Our mission is to equip families and individuals influenced by Down syndrome with the latest
medical advancement, social, emotional and educational support in order to maximize each
For further information about the EPDSC or the 17th Annual Lehigh Valley Buddy Walk, please
contact us at: 610-402-0188 * 610-402-0187 (fax) www.epdsc.net
Questions?
Contact Melissia Baker at [email protected]
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--> 2016 Lehigh Valley Buddy Walk <-•
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Saturday, September 24, 2016
2:00-6:00 PM
FREE for individuals with Down syndrome;
$15 adults; $15 children
Valley Preferred Cycling Center,
Trexlertown, PA
Register at:www.lehighvalleybuddywalk.org
“Making Inclusion Work:
Practical Tools and Strategies”
August 24, 2016
Pennbrook Middle School, 1201 North Wales Road,
North Wales, PA
For more information and to register visit:
https://register.asapconnected.com/default.
aspx?org=3416
6900 Hamilton Boulevard
PO Box 60
Trexlertown, PA 18087
Contact Us
Phone:610.402.0184
Fax:610.402.0187
Email:[email protected]
Web:www.epdsc.net
The 7th Annual EPDSC Annual
Golf Outing
The Eastern Pennsylvania Down Syndrome Center is
proud to announce the seventh annual Golf Tournament.
This year, the tournament will be held on:
When: Friday October 14, 2016
9 AM shot gun start time
Where: Allentown Municipal
Golf Course
Cost: Individual $70, Foursome $260. Includes green fee, cart, hot meal and beverage.
eRegistration will open up on July 29, 2016. If you have
any questions, please contact Mike Carney by email at
[email protected].