Long Island SNAP-Calendar
IN THIS ISSUE
Parent Training Calendar
Helpful Tools For Back To School
Article on Federal Government Benefits and Entitlemtnes
Focus On Family Feature
Sibling Talk: When to discuss your childs diagnosis with their
Update on PFSS Grant Programs
Trick Or Treating Tips
Mon. Oct 6th
Bronx Parents Helping Parents Support Group Monthly Meeting at the
5625 Arlington Avenue,
Bronx, NY 10471
RSVP a must (917) 215 1100
Wed. Oct. 23rd
7 pm, Garden City, NY
"Addressing critical issues families with special needs loved ones
face" Topics include: Benefits & Entitlemtnts, Guardianship
Proceedings, Creating Letter Of Intent and more.
RSVP A Must, call for details
(516) 521 1099
Mon. Oct. 27th
6 pm, Garden City, NY
"Orientation to PFSS, Where There's A Will, There's A Way" Grant
RSVP a Must. Call for details
(516) 521 1099
Wed. Oct 29th
P10x School at 304x
2750 Lafaette Avenue, rm 122, Bronx, NY
RSVP A MUST (917) 215 1100
Fri. October 31st
Parents, Teachers, Support Groups, and PTA groups...
Are you looking to bring free parent training workshops on site for
members? We can provide quality parent training to help ensure the
long term quality of life families with special needs loved ones.
Our workshops address topics from alternative housing, qualifying for
benefits and entitlements, the ABC's of IEP's, The importance of
Special Needs Trusts, Creating Your Letter Of Intent, Guardianship
Proceedings and more.
To schedule a workshop, call us at (516) 521 1099.
In 2008, families with special need children may be eligible for
grant subsidized and greatly reduced end of life documents including,
Last Will and Testament, Living Wills, Health Care Proxies and Minor
and Testamentary Special Needs Trusts. For more information and to
qualify please call us at
(516) 521 1099
and RSVP for our next orientation on October 27th at 6pm.
Trick Or Treating
Consider Trick Or Treating at a local mall or shopping center. Store
owners are usually stocked up for passers by and local shoppers.
Going door to door may be dangerous depending on the area you live in
and if it rains, an indoor mall is always a great place to be.
Consider applying reflective tape to costumes and candy bags for
Remind children to only trick or treat at well lit homes and to NEVER
go inside anyones house, garage or hallways.
Make sure the kids have a good lunch and dinner and give them a
little goodie bag to take along on their trick or treating adventure,
so they aren't tempted to eat candy before you've had a chance to
Remind your children never to pet any animals they may encounter at a
front door and if a pet is enclosed in a front yard or fence,
consider skipping that house.
Always carry a spare candy bag incase the one you go out with breaks!
Make sure costumes are flame retardant and an appropriate length.
Make sure your chils is appropriately dressed under their costume.
1225 Franklin Avenue, Suite 325, Garden City, NY 11530
Office: (516) 521 1099 Fax: (866) 520 9598
From the Co-Founders
Back To School
Heading back to school is usually an exciting and overwhelming time.
For some parents the excitement soon turns to frustration when
getting their children and new teachers quickly acquainted doesn't
go a seamlessly as they'd hoped. To help facilitate getting your
child the attention they need and the teachers the information on
what works best for your child, we suggest using a form letter
entitled, "Letter For My Teacher, 15 Things You Should Know About
Me" written by Jene Aviram, a parent of a special needs child and
founder of Natural Learning Concepts (www.Nlconcepts.
Jene's template is a useful tool for parents looking to clearly
define and highlight their childs individual strengths, weaknesses,
likes, dislikes, triggers and more. Teachers who get a mini
reference sheet with some insight on a new student will be able to
facilitate a smoother transition into the school year, with a less
phone calls and interruptions to the developing teacher student
To get a copy of the template and to use "A Letter For My Teacher",
click the following link and download it online.
Did You Know?
Federal Government Guidelines
For most families the thought of needing a TRUST is only for
Rockefellers and the very wealthy. What most of the families who come
through our parent training courses learn, is that when dealing in
the world of benefits and entitlements a mere $2,000 makes your loved
one with special needs a "Rockefeller" in the eyes of the federal
Regardless of where you live and what your loved ones' diagnosis is,
if they are receiving benefits or entitlements or may become eligible
for them at some point in the future, they could loose their status
when any moneys or assets in their own name exceed $2,000. Consider
these beneficiary designation pitfalls that may jeopardize your loved
ones benefit eligibility and entitlements.
Beneficiaries and contingent beneficiaries on your personally owned
or life insurance from work.
Your retirements accounts
Anything named to them using a "blanket" provision like "all
grandchildren equally" or "all children, nieces and nephews equally"
In your wills or the wills of well intentioned family members
If you are unsure of your beneficiary designations or if you use the
$2,000 guideline limit and know your loved ones' benefit eligibility
is in jeopardy, please call us for a one on one consultation.
Remembers benefits and entitlements mean access to educational
resources, respite care, adult day services when your child ages out
of the school system and other services your money can't buy.
Benefit eligibility is critical to protect so be sure and secure as
many entitlements for your special needs loved ones as soon as
Focus On Family
Each month we hope to bring you personal stories of families we are
working with in hopes of sharing their joys, struggles, experiences,
and overall inspiring stories of raising a loved one with special
Lynn, Steven and their son Seth are an amazing family.
Seth now 4 ½ was diagnosed with Cerebral Palsy at age 2 and since
then has come a long way with therapies and continued support from
school, family and friends. We had a chance to ask Lynn some
questions about Life with Seth and here's what she had to share with
Question: Tell us about managing a busy schedule. As two working
parents, how to do fit therapies, family fun and down time in for
both of you and Seth?
Lynn : Morning time I get Seth ready and daddy takes him to school.
Daddy picks up from school and we take turns in the evening. We have
routines and roles which are helpful to running our household. Daddy
always gives Seth his bath and it is a great time for them to spend
together and bond. Keeping a schedule for therapies happens because
of the folks who are involved in our support system of family and
friends. Usually Seths' grandma steps in and takes him to any extra
activities that he needs to be taken to while Steven and I are at
work. His grandparents are very much a part of Seths' life and he
loves spending time with them, and luckily for us, they support our
decision and efforts to keep Seth involved in therapies outside of
school. I like to be involved with all of Seths' medical doctors and
I try and make all doctor appointments on Friday, since I don't work
that day. For us, weekends are for fun. Steven and I both enjoy
doing things together with Seth as a family and we try and take him
different places that typical families would go, like the museum,
Jungle Island , Miami Seaquarium, you name it. We also take many
trips throughout the year to Orlando and of course Walt Disney
World. Seth loves Disney and with his new power wheel chair, given
to him by the Darrell Gwynn Foundation this year, getting around has
been a bit easier for our growing boy! Fitting everything in is
definetely a team effort, we seem to have it down to a science at
this point and know how to prioritize and leave room for fun. As a
general rule of thumb, where one stops the other continues. It works
well for us. As for our personal down time as a couple - What is
Question: What are some of the Goals you have set for Seth out over
this year, academically, socially, physically, emotionally?
Lynn: We'd like him to be more independent and to learn to walk and
feed himself, potty train, and do the normal everyday things that
kids can do that right now Seth can't. Physically, Seth is very
demanding and caring him for him isn't always easy on me woth a back
condition of my own. As he gets older and heavier changing him,
bathing him and just getting him in and out of the car can be
difficult. We hope that with continued therapy and help from his
teachers at school and what we work with him on at home, Seth will
one day walk, feed himself and become more independent. We want him
to learn to do those things himself! Seth has come a long way with
his therapies and can maneuver his power wheelchair controls with his
hand. This has given him some freedom and us some dents in the
walls, so I guess it's all coming together!
Question: As a couple, do you have certain goals you have set for
yourselves for this year as well?
Lynn: Getting out of debt and trying to pay off some of our bills is
a definite priority. Justs like any couple we have things we'd like
to do and dreams for us and for Seth. As long as Steven and I
continue to support each other in our roles as parents, we can
accomplish anything. We recently came together with SNAP to put
together our wills, special needs trust and insurance plans in
place. We always knew it was something we had to do, but learning
what was right for us, where to start and how to make it happen
without major interruption to our schedule and lives wasn't easy to
find. Now that it is done, we feel a huge relief. We feel better
knowing that even if we weren't here for Seth, the things we want for
him and the level of care we want him to have will now be in place.
Question: Who are some of the key people that support you in your
role as parents?
Lynn: Family is important, Seth's grandparents are the best, they are
100% behind us and help us in any way they can. We also have great
therapist, Jen Stein, who's worked with Seth since his birth and
together have formed a bond and made great progress. Jen is like on
of the family and Seth loved her very much. Pediatric Therapy
Associates are also on our list of helping hands for Seth's care,
Seth has been going to them since he was little and they've seen him
grow up and improve and they are wonderful and kind and sincerely
looking to help families and individuals with special needs. We also
have an amazing group of friends as well who are behind us and are
Question: Any specific advice or words of wisdom for families with
children who have been diagnosed with CP? Or for parents in
Lynn : Lots of patience! Lots of hard work and determination. And,
above all - never, never, never give up!!!! And last but not least
Recently we met with a family who has 5 yr old twins. One twin has
been diagnosed on the Autism Spectrum and recently the parents have
been wondering when's the best time to talk to their son about his
From the time the twins were born, they have done everything
together, play dates, trips, family fun and even trips to the
dentist. Now with new therapies, evaluations and other appointments
in the calendar for their daughter, their son wants to know why he
isn't seeing Dr. Jones or going with her on outings when she's busy
with therapy and other activities.
Our advice to them was simple - teach your children that everyone is
unique and different, even twins as close as the two of them. Show
them how everyone is individual, everyone looks a little different,
has different ways they learn, has different things that they enjoy,
are good at or may need help with. Then use examples of them in
their every day life to show similarities along with their
differences without any negative connotation to them.
As the children get older, parents have to gauge when they feel the
siblings are emotionally able to comprehend and understand the
diagnosis without feeling afraid or overwhelmed by it and can then
have the conversation with them.
When did you tell your typically developing children about their
brother or sisters diagnosis? Did you use childrens books, seek the
help of therapists, maybe you did not mention it at all? Whatever you
did we are interested in your thoughts about when to talk to siblings
about diagnosis. If you want to share your story with us, please e-
mail us at info@LongIslandSNAP
families, new to a disgnosis share the facts with their children in a
safe, and approachable way.
© 2008 SN Advisory Partners Inc.
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