Chinese Family Support Conference
July 7th from 8:30 - 1:30
13-14 41st Ave, Flushing NY
Click here for info >>> Chinese FSS Conference 7 7 2017.pdf
Project GROW: Mandarin Sessions
Please share the following flyer with any of your families who are fluent or understand Mandarin. Project GROW is collaborating with Charles B. Wang Community Health Center and University Settlement in the city and this is open to families who reside in Staten Island if they are willing to travel.
Families must have OPWDD eligibility- no Self-Direction at this moment.
Click here to see the flyer: Mandarin.pdf
Adapt Community Network (Formerly UCP)
Free Workshops for May and June 2017
Workshops for all parents, professionals and caregivers.
Click here to see a listing of the workshops offered: >>> Adapt Calendar May 2017.doc
17A Guardianship Under Threat
Contact your legislator to support a bill to
preserve Article 17A Guardianships
Disability Rights NY has brought a lawsuit seeking to repeal Article 17A Guardianships in federal district court. Such a court decision could create chaos for thousands of Article 17-A guardianships throughout New York State.
The lawsuit argues that 17A Guardianships are unconstitutional for several reasons, including that:
- Article 17-A does not allow tailoring of a guardianship to recognize the unique needs of the individual (for example, person is capable of making decisions about where to live, whom to live with, but not about medical issues).17A is one-size fits all, unlike Article 81 (the other guardianship law in NYS).
- Most guardians are granted complete authority over the person with intellectual/developmental disabilities, provided the individual is determined by a court to be incapable of managing his or her own affairs.
- The basis for obtaining guardianship is diagnosis, as opposed to functional ability of the individual.
Proposed Legislation: S.5842 Hannon/A.5840 Levine Would Preserve Article 17A Guardianships
- This legislation amends Article 17-A of the Surrogate’s Court Procedure Act to resolve these and other constitutional concerns—thus eliminating the need for the lawsuit brought by Disability Rights New York.
Fragile X News
1. The Fragile X Center at Institute for Basic Research (IBR) is operating again with Institute professionals and with Dr. Vicki Sudhalter (recently retired from IBR) consulting for the Center. Please note that in addition to psych evals, etc. Dr.Vicki is available to do school visits and consults within a defined geographic area for Greater New York City. I attach a flyer with more information about the FX Center.
The contact person at IBR for setting up appointments is Ms. Divya Moorthy, genetic counselor. (Previous genetic counselor, Nancy Zellers, has retired). Her number is 718-494-5369. She will give you all the details.
2. Dr. Laurie Yankowitz is available to do school consults and in-service training to any groups serving, or potentially serving, individuals with fragile X syndrome. Dr. Laurie’s consults are done through a contract with OPWDD for information and referral within New York City. You can contact Dr. Laurie at HeartShare, 718-422-3271 or firstname.lastname@example.org.
3. The National Fragile X Foundation (NFXF) is getting ready to roll out this years Let ‘em Know fundraising campaign on a new internet platform. Its always during July — Fragile X awareness month.
It will be a great time to:
- let friends and family know how fragile X impacts us
- ask for their support
- funds raised are shared by
- our local Fragile X Resource Group of Greater New York City to provide scholarships for conferences and advocacy day, direct support to NFXF, organize events, provide educational activities and support
- and by the National Fragile X Foundation for education, support and research
So, please look for info soon on Let ‘em Know 2017 and join our team Fragile X Resource Group of Greater New York City. Please let me know if you have any questions.
And then to celebrate and spread awareness let’s meet for dinner at the usual midtown restaurant La Vie ‘en Szechuan on Thursday, July 20, at 6:30 pm.Convenient to subways, Penn Station, Grand Central.
Same deal as previous years… meal is on us if you participate in Let ‘em Know and raise at least $50!!!
Thank you for joining in the effort to improve the lives of individuals with fragile X and their families.
Therapeutic Horseback Riding
For more information on HOOPH, contact Megan Delmar
Phone Number: (718) 981-9251
Parent to Parent of New York State
Workshops presented by Parent to Parent of NYS: Click here >>> Workshops We Provide
Family Reimbursement Program for Staten Island Individuals
FOR STATEN ISLAND INDIVIDUALS ONLY*
* Family Reimbursement Money is
Available for the fiscal year - July 1st 2016 to June 30 2017*
At this time the Family Reimbursement Program has ample funds available to
reimburse families for goods and services for the fiscal year 2016-2017.
We ask that you submit an application along with original Receipts /
Invoice within the current fiscal year.
Families may purchase services and goods, which are not funded through
*A Family Reimbursement Application may be submitted every 12 months from
the last submission. However, priority will be given to those persons
applying for the first time. For all other applicants, a review of previous
reimbursement history will be taken into consideration.*
*PLEASE BE AWARE – FISCAL YEAR GOES FROM JULY 1 20XX, TO JUNE 30 20XX. *
*WE CANNOT REIMBURSE FROM ANOTHER FISCAL YEARS BUDGET*
Eden II Programs: Staten Island Crisis Respite Program
EDEN II PROGRAMS HAS OPENINGS AVAILABLE IN STATEN ISLAND CRISIS RESPITE PROGRAM
Click here for more information: Crisis Respite Flyer-SI.pdf
SDMNY: Guardianship and Alternatives: Frequently Asked Questions
Guardianship and Alternatives: Click Here
Uniqkid is a specialized, multi-tiered organization, dedicated to providing integrated programming to children with special needs and their families.
It is located at the Aviator Sports and Recreational Center in Brooklyn.
To schedule a screening, please feel free to contact Karina@uniqkid.org, or call 1-844-426-8647 ext. 1, to schedule an
For more information, click here see their website.
AHRC Bowling League
How do you spend your Saturday???
AHRC has begun a Saturday Bowling League on Staten Island.
The Staten Island bowling program meets at Showplace Bowling, 141 East Service Road, Staten Island on Saturdays from 2pm -4pm. The cost is $5 a game including shoe rental. transportation is not provided for this program.
The annual AHRC bowling tournament will be in May.
For more information, call Sam Emsell at (212)780-2596.
Social Skills Group
New Alternatives for Children
37 W. 26th Street, New York, NY
For children and adults with ta diagnosis of autism (ages 3-21)
Click the following link for more information: Autism Social Skills Flyer.pdf
The NYC DOE's Family Guide for Assistive Technology
Early Childhood Direction Center
Click below for the Fall 2016 ECDC newsletter:
New York Road Runners Wheelchair Training Program
The NYRR announced today their first-ever NYRR Youth Wheelchair Training Program to introduce parents and youth to the sport of wheelchair racing. This program is free and open to youth ages 7-21. Please pass this information on to youth and parents that may be interested in this program.
The program is open to youth who have physical disabilities and those who have the ability to push an everyday chair. Candidates include those who need to use manual wheelchairs full-time and those who may use a walker or crutches for short distances but a wheelchair for longer distances. This includes young people with hypertonia, ataxia and/or athetosis, impaired muscle power, impaired passive muscle range of motion, and/or limb deficiency and those who do not wish to run with prosthetics.
The Disability Scoop
Community Living Skeptics Often Have a Change of Heart
Despite initial opposition, a new study suggests that many families of those with disabilities required to transition from institutions to community living are ultimately pleased with the outcome.
The Eden II Programs Diagnostic and Outreach Center
The Eden II Programs Diagnostic and Outreach Center is pleased to remind you that we are offering 4 webinars during the month of April. All of our webinars are delivered by a live presenter who is a topic area expert with years of experience working with individuals on the spectrum. The live format allows for frequent opportunities to interact with the presenter. We hope you consider joining us for one of these exciting webinars.
Registration for all webinars is FREE. Continuing education credits for Behavior Analysts or Speech Language Pathologists are available for some webinars for a nominal fee.