2014 Spring Newsletter - Association for Children with Down

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4 Fern Place
Plainview, New York 11803
Tel: (516) 933-4700
Fax: (516) 933-9524
www.acds.org
Serving children and adults with Down syndrome,
autism and other developmental disabilities
ACDS Newsletter
Spring 2014
Collaboration with Disability Opportunity Fund Leads to Opening of Eighth Group Home
Albertson Home Welcomes
Four Individuals with Autism
ACDS has opened its eighth group home, located in Albertson N.Y.
The new home, occupied by four adults with autism, is leased by ACDS
from the Viscardi Center, which provides services to
educate, employ, and empower children and adults with disabilities.
The Disability Opportunity Fund (DOF), which provides technical
and financial services to individuals and organizations serving those
with disabilities, assisted in connecting the Center with ACDS.
A ribbon cutting was held on January 12, 2014 to celebrate
the home's grand opening. In attendance were representatives
from organizations and agencies that have supported the new home including DOF; NY State Office of People with Developmental
Disabilities; and Maureen Fanning, Executive Director of the Jack
Fanning Memorial Foundation, a private foundation which seeks to
improve the lives of individuals with autism. The Fanning Foundation
provided $19,000 of funding for final renovations.
The new residents at home (left to right),
John Cerina, Beth Wolf, Ryan Kennedy and Rich DiSilvio.
"There was a great need for these families to find a safe and nurturing home for their loved ones” said Charles Hammerman, president
and CEO of DOF. "ACDS is a wonderful organization and was the right choice to take over the operation of this home."
Very few new group homes have opened on Long Island in the past few years, so this home, as well as the collaboration between the
parties involved, is very significant. The young people who live in this home had been approved and actively looking for a new residence
in 2008, when they were told that the project had been put on hold indefinitely due to state funding cuts.
A letter sent to ACDS by the families of these new residents says it best: "Our loved ones can share in the experience of moving away
from their parent's homes, and into their own residence where they can be cared for with the dignity and love that they deserve."
In this ISSUE...
Collaboration with Disability Opportunity Fund Leads to
Opening of Eighth Group Home
Annual Gala Gives Children a Voice
From the Desk of the Executive Director
Michael Smith Selected As One of LIBN’s “50 Around 50” Honorees
Special Thanks To…
Annual Patrick Owens Fundraiser Doubles the Impact
Fitness and Fun for a Cause
ACDS Pays It Forward to Winthrop-University Hospital’s Cancer Center for Kids
A Story of Three Generations: Lifelong Family and Friends Stay Connected
ACDS Elects Three New Board Members
Life After Preschool
ACDS Warms Up Winter with First Annual “Snow Ball”
Michael Smith Joins Industry Advocacy Organization
Save the Dates
Board of Directors
We Need You!
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"We want our residents to have a comfortable
home to live in, where they can be happy and wellcared for, while still feeling a sense of independence
and pride in their accomplishments," says ACDS
Executive Director, Michael Smith. “This project is
a clear example of our commitment to serve those
with special needs, despite the tough fiscal times
faced by our organization and other non-profits
throughout the state."
He adds: "We are most appreciative to our
private donors, who help fill the gap between public
funding and our operating budget. This home will
provide a supportive and creative housing solution
for these young adults, who deserve all the support
we can provide.”
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ACDS Newsletter
Spring 2014
Annual Gala Gives Children a Voice
“Live Ask” Raises Funds for Innovative Speech Evaluation Center
From the Desk
of the
Executive
Director
Sustainable Growth
Sustainable growth has been the operative theme at ACDS, at least
since the financial collapse and recession struck in 2008. While other
non-profits pulled back and cut programs and services, our talented staff
and managers saw opportunities and grabbed them.
The state would no longer fund bricks and mortar. Well, okay, we created
an Adult Day Habilitation (Day Hab) Program -- a “Program without
Walls” – to serve recent high school graduates. The program grew from
a paper dream to serve 50 young adults in three years.
There was a demand for more placements in our popular integrated
classes. We worked closely with the State Education Department to
restructure the program, serve more children, expand from 4 to 5 classes,
and have plans for future expansion in 2015.
We were outgrowing our site on Newbridge Road. We hunted for space
and are expanding in Plainview to a site leased from St. Pius X Church,
which both 5 Plus and Day Hab will move into before you receive
this Newsletter.
The ACDS way is to see a need and find a solution. A solution that we
can find a way to sustain when the initial funding dries up. This is how
we have grown through more than five challenging years of flat funding
and state budget cuts. We know that the demand only increases during
these lean years. We intend to continue to be responsive to that demand.
We intend to grow new programs and services that are sustainable. This
legacy of “sustainable growth” is something that we can all share and be
a part of. Our vision must become clearer when others are not
stepping up - - it is when we are most needed.
ACDS’s most successful gala ever raised
more than $250,000 and showcased
exactly how ACDS helps transform
lives.
The gala honored Frank Finkel, CEO
of Davis & Warshow, and his son and
company President, David Finkel.
Davis & Warshow is metro New York’s
premier kitchen and bath supplier. In
addition to their vast professional achievements, both men are Long
Island natives, family men and avid philanthropists. The Finkels have
been generous supporters of ACDS for many years.
The highlight of the evening was a very successful “Live Ask.”
ACDS’s School Principal, Cecilia Barry, addressed the crowd
of 300 attendees; more than 35 people joined in and made
donations surpassing $55,000 to give children a voice. Thanks to
these supporters, ACDS has established a speech evaluation center
that will be a center of excellence for preschoolers throughout Nassau and Suffolk counties who are nonverbal and require assistive
technology to communicate. The center was formally unveiled at a
ribbon-cutting ceremony on May 21.
Cecilia
commented,
“In
addition to having significant
communicative
disorders,
these children can be
challenged by genetic or
developmental delays or a
diagnosis on the autistic
spectrum. These conditions
are often combined with
motoric limitations. The Live
Ask has enabled ACDS to
acquire cutting-edge technology that will be used to evaluate a child’s communication
skills and match them with an
augmentative and alternative communication (AAC) device. AAC devices provide children and their
loved ones with the ability to connect and communicate in a way
that was previously unimaginable.”
In July 2012, ACDS began to conduct AAC evaluations utilizing borrowed equipment. Now that we have established our expertise and
purchased state of the art devices, we can help families evaluate their
child’s needs and support them in acquiring the necessary technology
as part of their mandated special education services. AAC devices
provide verbal output for the communicator when it cannot be
accomplished through their own speech. They have the capacity
to be adapted for children at all different developmental levels, as
well as children who can only access a device through alternative
methods, such as using a switch or even using their eye gaze to make
selections.
Whether a child uses a device to say “mommy” or “daddy” for the
first time, or the device enables a child to participate in play with a
parent or peer and say “that’s silly!”, it provides the ability to connect
and communicate in a way that was never before possible.
Michael Smith Selected As One of LIBN’s “50 Around 50” Honorees
ACDS’s Executive Director was honored at the “50 Around 50” awards held by Long Island Business News (LIBN) on Thursday, September 19th at the Crest
Hollow Country Club.The awards were established to recognize the accomplishments of Long Island community leaders around 50 years old. Award recipients are
not only local business pioneers, but also mentors and supporters of not-for-profit organizations. Michael was selected for his years of devotion, leadership and
commitment to improving the community through ACDS’s services.
Smith commented, “The work we do at ACDS is so important. To be recognized by my colleagues - on top of the rich reward we get for helping those with
developmental disabilities - is such an incredible honor. The future of our organization is bright. As a life-long agency, we’ll continue to grow and provide the very
latest programs and assistance for both children and adults.”
Since Michael came to ACDS in 2004, we have more than doubled in size. The organization has built its reputation and expanded program offerings, allowing
ACDS to serve many more individuals over a wide scope, while never losing sight of our original mission. ACDS is thriving today due in large part to his tireless
efforts.
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ACDS Newsletter
Special Thanks To…
… all our generous donors. Those who give on a regular basis, no matter
the size of the gift, allow us to plan more efficiently and are essential to
our ongoing ability to serve more than 1,000 individuals. Our annual
appeal was once again a huge success, raising nearly $50,000.
Spring 2014
Annual Patrick Owens Fundraiser
Doubles the Impact
Benefits 2 Causes – ACDS and EastRockaway HS Athletics
… Anthony Iandoli and the Mid-Hudson Sporting Clays in New Paltz,
who have been holding a skeet shooting fundraiser since 2006. Last year’s
event raised $23,000 and this year’s event was held recently on May 16.
Anthony is the uncle of one of our graduates, Meredith Schrader.
… Sue Danis and the students of Merrick Avenue Middle School, whose
annual fundraisers have generated thousands of dollars for ACDS in the
last ten years. Sue is the mother of Lauren Danis, an ACDS graduate and
an MSC consumer.
…Terence Gallagher and his co-workers at KKR Financial, who held a
charity softball game with their auditors at Deloitte & Touche. KKR was
victorious and more than 100 people donated $42,000 to our cause.
Terence is a close friend of Gene Kirley, our Board President.
Fitness and Fun for a Cause
Daddies for Down syndrome
When his brother Patrick died in 1997 from complications related
to Down syndrome, Alan Owens wanted to find a way to keep
Patrick's memory alive and, in turn, help those similarly challenged.
Since its inception in 2004, the Patrick Xavier Owens Memorial
Foundation has raised more than $100,000 for ACDS, where
Patrick was a student.
These fundraising efforts have inspired ACDS’s Director of Development and Corporate Relations, Vinnie Santo."The Patrick Owens
fundraiser is one of the highlights of the year for ACDS. I have
watched Alan dedicate himself to this cause with great passion,
while balancing his work and growing family commitments. I am
truly in awe of what he has accomplished on our behalf."
What do you get when you
add 60 moms and dads,
fun music, and a great
cause? The 2013 Daddies
for Down syndrome
fundraiser! Daddies for
Down syndrome was
started by Kristine Oleson,
the owner of Health
Coach, a health & fitness
business in Kensington,
Maryland. In 2001 her
nephew and godson Connor
was born with Down syndrome and, as she says, "he has changed my life for the
better." Connor attended ACDS and in honor of him, Kristine created this special
day in hopes she could make a difference for all children and families living with Down
syndrome.
But on Saturday, December 7 2013, this year's event took on
additional significance. After Super Storm Sandy left East Rockaway
High School and its athletic facilities in shambles, Owens decided
to use the annual event to raise money for both ACDS and his
former high school’s sports program. Boy, did he ever, raising more
than $40,000 in total. East Rockaway athletic director Dominick
Vulpis is grateful for Owens’ efforts: "Athletics at East Rockaway
has always been more than just winning — it's about teaching civility
and life lessons learned through sport," Vulpis said."Alan, a former
student-athlete, is a prime example of this expected outcome. As
part of our program, we tell our athletes, ‘What goes around, comes
around’ in life and it's important to pay things forward for the good
of our community. As we continue to rebound from Sandy, Alan’s
love continues to repay our district."
It's four years later and Daddies for Down syndrome is still going strong! Raising
about $5,700 Kristine rallied her Mommy Boot camp troops, roped in the daddies and
kicked the calories away to support ACDS. The day was not only for mommies and
daddies. On this special day, 50 face-painted kids joined in the Super Fun Family
Dance Party after watching their moms and dads. And why not throw in a lemonade
stand for more support? That’s just what Kristine’s kids and their friends did, raising
an extra $500! With raffles sponsored by Hilton Hotels and the crowning of Mr.
Bootie 2013, this year’s Daddies for Down syndrome definitely put the “fun”
in fundraiser!
"This is a very special day that my family and I look forward to each
year — celebrating the life of Patrick with all of our friends and
family," said Owens, who was born and raised in East Rockaway
along with seven brothers and a sister.
Thank you to all the participants and volunteers for helping ACDS continue the work
we do. We look forward to next year!
This year’s events began with a three-on-three coed basketball
tournament at East Rockaway High School, followed by a Disney
character party and a dinner dance at the Coral House in Baldwin.
"This was the first year that the foundation has donated to two
different great schools that have played major roles in my family' s
lives over the past 25 years."
Government funding has been held flat for many years and does
not fully cover the cost of providing services to our families. ACDS
could not survive without the generosity of supporters like
the Owens family and their friends. We are so grateful that they
recognize that our staff cares deeply for every family that we serve.
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ACDS Newsletter
Spring 2014
A Story of Three Generations:
Lifelong Family
and Friends Stay Connected
ACDS has been providing programs and services since 1966;
some members of our dedicated staff have been with us for
a large share of our history. Their commitment to the organization has profoundly affected not just their lives, but also the
lives of their families and friends across three generations.
Principal Cecilia Barry has been with ACDS for 30 years and
Pam Wise, a special education teacher, has been with us for 34
years. In 1984, Cecilia, Pam and a few other ACDS working
moms, started what is now known as “Kids Connection,” a
New York State Licensed, DSS approved daycare program that
provides an enriched Early Childhood Program for children
ages six weeks to five years. This visionary daycare program
was first launched in Bellmore with the young mothers, their
six children and a handful of licensed professionals in a small
room with toys and equipment brought from their homes.
What began as a way to bring their children to work expanded
quickly. A larger space was acquired and staff members
and siblings of students soon joined. It was opened to the
surrounding community when ACDS moved to Plainview in
1999 and now has a long waiting list. The curriculum currently
includes enriched academics, mommy and me classes, music
and movement classes sensory activities, sign language,
computer instruction, art education, socialization and attending
skills.
As ACDS’s enrollment grew over the years, so did the spectrum
of services and the number of lives touched by the organization. From the start, Cecilia and Pam’s children were integrated
with children with disabilities which sparked life long friendships and connections. After years of hearing about the
school’s services from Cecilia’s daughter, one of her daughter’s
friends decided to become an occupational therapist. Barry
commented, “Pam’s daughter Meri and my daughter Emily
have had a long time friendship and each now have a baby boy
coming to Kid’s Connection. The hope is that this is the start
for their children, too! The third generation continues the
legacy.”
ACDS Pays It Forward to
Winthrop-University Hospital’s
Cancer Center for Kids
Some of the adults that ACDS
serves have become community
servants in their own right. They
have joined forces to help children
with cancer and protect the environment by collecting recyclable
bottles and cans for WinthropUniversity Hospital’s Cans for
Cancer Program. The program invites volunteers to collect and
recycle cans to help children
affected by cancer. Since 2010,
ACDS’ Day Habilitation (Day
Hab) has been involved in the Cans
for Cancer program. Day Hab
participants include young adults,
ages 21 to 27, who have transitioned
from ACDS's educational services
into its Adult Day Program. Day Hab participants collect returnable
bottles and cans at designated locations that have been assigned by
Winthrop.
“Every week we have different groups going to our assigned sites to
make collections,” said Linda Sperber, Director of Community Support at ACDS. “We have been given about eight sites and these young
individuals collect all of the recyclables. Once they are sorted on location our groups submit forms to Winthrop with the final tally. All
proceeds go to Winthrop’s Cancer Center for Kids."
The Day Hab program is headquartered at 665 North Newbridge
Road in Levittown. It was initiated in September 2010 with six participants and has grown rapidly; it is expected to reach 50 participants
in September 2014.
ACDS's contribution has proven to be positive,” said Day Hab
Supervisor Elizabeth Razukiewicz. “As our program grows Winthrop
continues to expand our pick-up locations. Our participants,who have
always been on the receiving end of community support, now have
the great opportunity to be on the giving end and know that they, too,
can actively help others.”
ACDS Elects Three New Board Members
ACDS named three new members to our Board of Directors this past November - we welcome Emily Brodeur, James Vaccaro and Dr.
Leonard Krilov.
Emily is Managing Director and Head of Internal Communications for the Chief Operating Office, and the Chief Administrative Office at
JPMorgan Chase. Jim, a retired police officer, is a 20-year veteran of the New York City Police Department. Lenny is Chief, Division of
Pediatric Infectious Disease and Vice Chairman, Department of Pediatrics at the Children’s Medical Center at Winthrop University Hospital
in Mineola, NY. “ACDS is pleased to have Emily, Jim and Dr. Krilov join us on our board,” says Executive Director Michael Smith. “Their
unique skills and experience make them valuable assets as we continue to serve our families.” Emily and Jim are also parents of children in
our preschool.
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ACDS Newsletter
Spring 2014
Life After Preschool
ACDS becomes part of a child’s life through our Early Intervention and Preschool programs when children are very young. While
relationships and friendships established throughout the years at preschool often continue for many years, families may be a bit
apprehensive about what comes next.
The child who graduates is probably on their way to their first educational placement outside of ACDS. Leaving a place like ACDS
with all of the warm memories is difficult, but there is good news... ACDS continues to offer programs for children after they leave the
preschool and throughout their lives.
As families embark on their new journey ACDS will be there to guide them. Our school staff conducts transition workshops for families
of our graduating class and offer consulting services to local school districts that may have less experience in educating children with
special needs. Just when parents have gotten used to all of the Preschool acronyms, IFSP, OT, PT, IEP, and CPSE there awaits many
new acronyms. OPWDD (Office for People with Developmental Disabilities) is the state agency that oversees non-educational programs
for people with developmental disabilities. ACDS can assist families in applying for eligibility for their loved ones with respect to
OPWDD funded programs such as those run by 5Plus.
ACDS' 5PLUS Program offers the opportunity to maintain old friendships and develop new ones. 5PLUS promotes the development
of new skills while practicing previously acquired skills in an age-appropriate, fun-filled setting. We offer socialization/recreation
programs for children, teens, young adults and adults. 5PLUS also offers a Dance and Saturday Recreation for children five years old
and older.
Please call Erica Lepurage, ACDS Recreation Coordinator or Linda Sperber, Director of Community Support at 516 605-2391 for further
information.
ACDS Warms Up Winter with First Annual
“Snow Ball”
Celebrating A Night of Fun and Friendship
In the midst of the winter wonderland of snow that Long Island experienced this year,
ACDS hosted its First Annual Snow Ball, a semi-formal dinner/dance at Verdi’s in Westbury
for many of the teens and young adults that participate in our 5Plus programs
Held on February 7, the Snow Ball festivities included music with a DJ, dancing, dinner,
journal and like any true snowball — it was packed with fun. Thankfully Mother Nature
cooperated and we were able to squeeze the party in without any actual snow!
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Michael Smith Joins
Industry Advocacy Organization
Michael Smith has been named to the board of IAC – the Interagency
Council of Developmental Disabilities Agencies, Inc. Michael was
asked to fill a vacant seat representing Nassau County. As a board
member he will take on a governance role, helping IAC formulate
public policy decisions and providing direction on key issues that will
affect children and adults with developmental disabilities. ACDS first
joined IAC in 2011. Since then, Michael has been actively involved in
several IAC activities, including the agency’s recent three-day lobbying
event held in Albany in March. “IAC is one of the pre-eminent
industry associations in our field,” says Smith. “It is an honor for me
and ACDS to be named a Board member.”
"We wanted our young
people to have a night
that was all their own —
complete with food, dancing, and socializing," says Linda Sperber,
ACDS' Director of Community Support. "The importance
of having friends and attending age-appropriate activities are ideas
that are always fostered and encouraged by ACDS programs.
Our First Annual Snow Ball event was truly a snowball
event — accumulating hours of fun.”
Special thanks to all our
supporters who helped
make this happen,
including the Cardoza
family, who underwrote
the cost of the evening.
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ACDS Newsletter
Spring 2014
Monday September 22
Richard J. O’Brien Foundation’s
Annual Golf Outing,
partially benefitting ACDS – Southward Ho CC
Saturday October 25
ACDS Annual Gala
Honoring Dr. Brian Skotko – Garden City Hotel
Serving children and adults with Down syndrome,
autism and other developmental disabilities
If you are interested please email Event Coordinator
Laurie Schaefer at [email protected]
or call 516.933.4700 x 124.
Association of Plumbing Contractors of
LI’s Annual Golf Outing
to benefit ACDS – Southward Ho CC
Michael M. Smith, Executive Director
4 Fern Place
Plainview, New York 11803-4725
(516) 933-4700
www.acds.org
These events and the funds that they generate are vitally
important to allow ACDS to continue to raise awareness
and acceptance, as well as to continue to fulfill our
mission.
Monday September 15
ACDS BOARD OF DIRECTORS
Gene Kirley
President
Thomas DeMaggio Vice President
Barry Giarraputo
Treasurer
Tom Ryan
Secretary
Emily Brodeur
William Ife
Dr. Leonard Krilov
Tim Michel
Jim McHale
Michael Miller
Julie Rosbash
James Vaccaro
Chris Valentino
ACDS is looking for dedicated and reliable volunteers
who are enthusiastic about our organization and are
willing to support us with their time and talent by joining
one of our Special Event committees. Committee involvement includes helping to plan and execute each event,
along with soliciting attendees, raffles, auction prizes and
sponsorships. ACDS holds three events during the year
and we are in need of individuals to help serve on the
committees for either golf, St. Pat’s or our annual gala.
Save the Dates
ADVISORY COMMITTEE
Tom Ryan
Committee Chair
Liz Lawlor Campbell
Ray Cardoza
Craig Lomma
Tom McHugh
We Need You!
If you would like to make a donation to ACDS, please visit our website
and click on the ‘donate now’ tab, or use the enclosed envelope.
We thank you for your ongoing support of ACDS.
If there is an error on your mailing label for this newsletter,
please inform us of the corrected address.