News updates – bad
12/7/11 Techworks to go!
UCP of NYC mobile techworks center is a fully accessible vehicle customized to transport and demonstrate assistive technology devices. No age limit, all levels of ability, all 5 boroughs. 1-877-UCP CONNECT projectconnect@upcnyc.org
11/22/11 SSI to increase. http://www.disabilityscoop.com/2011/10/19/social-payments-increase/14268/
11/22/11 Saving for People With Disabilities may soon be Tax Free!: http://www.disabilityscoop.com/2011/11/15/saving-tax-free/14448/
11/17/11
2012 Kindergarten Enrollment for Families of Students with Disabilities
Arabic | Bengali | Chinese | French | Haitian Creole | Korean | Russian | Spanish <http://schools.nyc.gov/NR/rdonlyres/F0DAEBAE-793A-452D-859C-1DD8ADF6D4E1/0/Spanish_all.pdf> | Urdu
Kindergarten Application Period
January 9, 2012 – March 2, 2012
Families Notified about Assignment Offers
March 19, 2012 – March 23, 2012
Offer Acceptance Period
March 26, 2012 – April 13, 2012
As your child moves from preschool to Kindergarten, you may have questions about the types of special education services available to school-age students, the transition process, and what steps you need to take to obtain a Kindergarten placement for your child. To be eligible for admission to Kindergarten in September 2012, a student must turn 5 by December 31, 2012 and be a resident of New York City. In keeping with ongoing reforms in special education <http://schools.nyc.gov/NR/rdonlyres/7DB93188-A04A-40A5-BFAA-8F1402716F20/0/SpEdReformandKProcess2011final110411.pdf> , all students entering Kindergarten in September 2012, including students with disabilities, should participate in the Kindergarten Admissions Process <http://schools.nyc.gov/ChoicesEnrollment/Elementary> . Your child will likely attend the school that accepts him/her through this process.
Your first step is to complete an application at your zoned school (or a barrier-free school <http://schools.nyc.gov/NR/rdonlyres/2577284F-D5BD-4392-8723-DC08461AD7AA/0/AccessibleCommunityschools2010.pdf> , if appropriate) and any other schools of interest. We also invite you to attend an Orientation Meeting in your borough (please scroll down for a complete schedule) and to read our Kindergarten Orientation Guide <http://schools.nyc.gov/NR/rdonlyres/AFAF452E-E9BF-450F-814A-FEABF4654882/0/KindergartenOrientationGuide2011.pdf> for Families of Students with Disabilities. (Translations at top of page.)
11/10/11
Molecular mechanisms: Fragile X drugs could treat autism
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Telling tissue: The brains of individuals with autism have protein expression patterns that resemble those of individuals with fragile X syndrome.
Postmortem brains from adults with autism have lower-than-normal levels of the fragile X mental retardation protein (FMRP), which is missing in fragile X syndrome, according to a study published in October in The Anatomical Record1. Brains from both children and adults with autism also have abnormal levels of other molecules whose activity overlaps with that of FMRP, the study found.
The results suggest that the many promising drug treatments being developed for fragile X syndrome could also treat autism, the researchers say.
Individuals with fragile X syndrome lack FMRP, which regulates the translation of several genes. A study published in July shows that many of these genes, such as SHANK3 and PTEN, are also important in autism.
In the new study, researchers looked at postmortem brains from nine adults and seven children with autism compared with control brains from five adults and six children. The brains from adults with autism have about 75 percent less FMRP compared with adult control brains, the study found. Brains from children with autism have slightly less FMRP than control brains do, but this result is not statistically significant.
The researchers also looked at the amount of mGluR5, a signaling molecule that activates a number of genes, including some needed at synapses, the junctions between neurons. Because mGluR5 is known to activate many of the same genes that FMRP represses, inhibitors of mGluR5 are being investigated as treatments for fragile X syndrome. The brains from children, but not adults, with autism have about 200 percent more mGluR5 than do those from controls, the study found.
The study also found that the levels of gamma-aminobutyric acid beta 3, or GABARB3, a component of a receptor that represses brain signals, are 37 percent lower in the brains from adults with autism than in control brains.
Several studies have associated defects in GABA with autism, and a 2009 study shows that the brains of individuals with autism have lower levels of GABRB3 and other subunits of the GABA receptor compared with controls2.
References:
1: Fatemi S.H. et al. Anat. Rec. (Hoboken) 294, 1635-1645 (2011) PubMed
2: Fatemi S.H. et al. J Autism Dev. Disord. 39, 223-230 (2009) PubMed
11/10/11 NAA NY Metro Chapter Announces Its 2011-12 Helping Hand Grant Program The NAA NY Metro Chapter is pleased to announce that it once again will
be awarding "Helping Hand Grants" of up to $500 each to families in need. This year we will be awarding TEN grants. A Helping Hand
Grant provides your family with financial assistance to obtain necessary biomedical treatments, supplements and therapy services for
your child with autism. Grants will be paid directly to your child's medical professional or therapist.
If you are interested in applying for a one-time grant, please visit our website and download the instructions and grant application, complete the application and return
it to NAA NY Metro by January 31, 2012, with supporting documentation. Grant decisions will be completed by March 1, 2012.
Only approved grant recipients will be contacted. To be considered, applications must be completed legibly, signed and you must include all
supporting documentation requested.
PLEASE NOTE: Applications must be postmarked by January 31, 2012 to be considered. Please do not
apply for this grant if:(1) Your child was awarded an NAA NY Metro Helping Hand Grant in a prior year; or (2) You are seeking funds for
respite care, fencing, backyard play equipment, vacations, or other non-medical/therapeutic requests We encourage you to share this
announcement with others who may qualify for a Helping Hand Grant If you would like more information about us, please visit our website.
NAA NY Metro Chapter
60 East 96th St., Ste. 5CD
New York, New York 10128
11/1/11 Gov. Cuomo to sign Autism Insurance Bill.
Gov. Cuomo to Sign Autism Health Insurance BillMore Info <http://capwiz.com/a-champ/utr/1/IQNQQSDJIS/HGOVQSDJVU/7529843596>
Tomorrow in Albany
Good news! Governor Andrew Cuomo will be signing the autism health insurance reform bill tomorrow in Albany. It has been a long struggle and this bill moves us a good distance to where we need to be. It will cover ABA and other behavioral therapy, assistive technologies, and prohibits discrimination against people with an autism diagnosis in providing occupational, physcial and speech therapies. On the no-so-good side, it has a $45,000 annual cap and does not expand access to necessary therapies.
This is the result of years of work by thousands of people across the state. So be sure that those calls, letters, emails, office visits and work eventually can pay off. One lesson that must not be ignored from this experience is that when the autism community works together in good faith we can make significant strides forward. Hopefully, we can apply that lesson in the many struggles we still face.
Please share this email with family and friends and post to Facebook and other social networks. And if you support the efforts of the AUtism Action Network please consider making a donation at www.autismactionnetwork.org/donate.html <http://capwiz.com/a-champ/utr/1/IQNQQSDJIS/GTPJQSDJVV/7529843596>
10/26/11
FREE BOOKS FOR NEW YORK CITY PRESCHOOLERS
Dear parents of New York City preschoolers,
Have you heard of the NYC Imagination Library of the NYC Department of Education?
The NYC Imagination Library is a program that provides every child under five years old who resides in the five boroughs of New York City with a free children’s book sent to the home every single month regardless of your income.
Did I say free? Yes I did.
Did I say books sent to your child every month? Yes I did!
Did I say regardless of your income level? Yes I did!!
Also, there will be additional literacy tools such as books in native languages and reading incentive programs.
Beginning with the classic, The Little Engine That Could, your child will experience the joy of finding a book in the mailbox every single month.
The application for this too good to be true (but it is true!) program can be found at the following website. Complete the form and allow six to eight weeks for delivery. If you have any questions, you can call the NYC Imagination Library at (718) 642-5791 .
http://www.nyc.gov/html/nycha/downloads/pdf/NYC_Imagination_Library_application.pdf
Please share this information with your family and friends. But don’t delay. Your child could be reading today!
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Visit www.nyc.gov/hhc
10/25/11 Brooklyn Children's Museum to open a Sensory Room for children on the autistic spectrum in Spring 2012!!!
I am proud to announce that a grant has been given to the BCM for a sensory room for children on the autistic spectrum. After my son, who has Fragile X, was turned away from their toddler room in April, 2010 for being too old, I ranted and raved, wrote letters, made phone calls, and finally found a sympathetic ear in the form of their passionate President and CEO, Georgina Ngozi. It took nearly 1 1/2 years to get a grant, but The Joseph LeRoy and Ann C. Warner Fund recognized the need for such a space and wrote a sizable check.
The BCM is the country's oldest children's museum and recently completed an extensive renovation. But come Spring, 2012, this will also include a sensory room filled with all sorts of sensory tools, toys, exhibits, and games and staffed with specially trained museum personnel. Construction is scheduled to take 6-9 months.
10/25/11
For Immediate Release
Contact: Gary Shulman, 212-677-4650 ext. 20
SPECIAL CAMP FAIR ON SATURDAY, Jan. 28, 2012
Presented by Resources for Children with Special Needs, Inc.
212-677-4650 ext. 20 www.resourcesnyc.org
Parents and caregivers of children and teens with disabilities can plan ahead for summer with the wealth of information offered at the 27th annual free Special Camp Fair on Saturday, January 28, 2012 from 11 AM to 3 PM. at the Church of St. Paul the Apostle, (Entrance to Fair on Columbus Ave. near W. 60th St.) NYC . The Fair is presented by Resources for Children with Special Needs, Inc., (212) 677-4650 ext. 20 www.resourcesnyc.org
Representatives from 70 New York City day camps and sleepaway camps in the northeast will be on hand to help parents and professionals plan productive summer experiences for children with disabilities. The Fair will also feature information on travel programs, remedial education programs, volunteer and job opportunities and early childhood programs. Spanish and sign language interpreters will be available.
Visitors to the Fair will receive a free copy of the Camps 2011-12 Directory.
10/25/11 NY Times article – Parents push for more special ed afterschool programs
http://www.nytimes.com/schoolbook/2011/10/20/parents-push-for-more-opportunities-for-special-ed-students/
10/24/11 Save on summer camps.
These are a few handy tips to save money on summer camps:
1. Start looking early. Some camps offer 'early bird specials'. Searching early helps you budget and save for summer activities. To check the schedule for American Camp Association, NY and NJ fall fairs, go to www.aca-nynj.org/events. Or call 212-391-5208.
2. Child and Dependent Care Tax Credit – The IRS allows an income tax credit of up to $6000 of dependent care expenses if you have 2 or more dependents (up to $3000 for one dependent). The amount of the credit is based on your adjusted gross income and applies only to your federal taxes. This applies to qualifying day camps as well. Go to www.irs.gv for more info about the Child and Dependent Care Tax Credit.
3. A Dependent Care Flexible Spending Account allows parents to be reimbursed on a pre-tax basis for child care or adult dependent care expenses that are necessary to allow the parent to work, look for work, or attend school full time. See the FSA Feds website for more info at: www.fsafeds.com.
4. Contact the camp director and see what possible arrangements can be made. Some camps offer sibling discounts, early bird registration discounts, or payment plans.
10/14/11 Updated list of ipad apps for Special Education: http://xa.yimg.com/kq/groups/161612/1618702790/name/iPhone%20and%20iPad%20Apps%20for%20Special%20Education%2Epdf
10/4/11 Read the New York Times Arts blog about the special, autism-friendly performance of Disney's The Lion King!:
http://artsbeat.blogs.nytimes.com/2011/10/03/parents-and-kids-say-they-appreciated-autism-friendly-lion-king-matinee/
9/30/11 President Obama Signs Landmark Combating Autism Bill
We are thrilled to announce that President Obama has signed legislation renewing the landmark Combating Autism Act for another three years, assuring continued federal support for critical autism research, services and treatment. Autism Speaks Co-founders Suzanne and Bob Wright, and Board Member Billy Mann, today joined the President at the White House for an official ceremony that sends a message of hope to the millions of families and individuals affected by autism.
The Combating Autism Reauthorization Act (CARA) — sponsored by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House of Representatives and Sen. Robert Menendez (D-NJ) and Sen. Mike Enzi (R-WY) in the Senate — would not have passed without the tireless efforts of advocates throughout the autism community. Across the nation, countless families and individuals united in a single voice and petitioned Washington to pass this vital legislation. Thanks to their efforts, the message was heard loud and clear: CARA passed unanimously in both the House and Senate despite an uncertain fiscal environment.
The new law continues the federal government’s commitment to autism research, services and treatment at current levels, authorizing $693 million over the next three years. The original act provided nearly $945 million over five years. Since its passage in 2006, significant advances have been made in determining potential causes for autism as well as promising new early intervention behavioral treatments. By signing CARA into law, President Obama has ensured the federal government’s commitment to autism so that crucial research can continue unimpeded for the next three years.
Autism Speaks salutes our lawmakers for listening, and responding, to the 1.5 million families across the nation who live with autism every day. To learn more about CARA, visit www.autismvotes.org/cara. To thank President Obama and your member of Congress and Senators for their support, please visit www.autismvotes.org/ThankPresidentObama.
9/22/11 http://news.yahoo.com/startup-company-succeeds-hiring-autistic-adults-162558148.html
Start-up company hires autistic adults! Read the story….
5/25/11
The last few weeks have seen a flurry of activity in the Fragile X field! Fragile X research is drawing national attention as featured in the two video links below:
Moonshot to the Mind and Fragile X on BioCentury This Week
50 years after the U.S. set out to put a man on the moon, former congressman Patrick Kennedy has kicked off Moonshot to the Mind – a public-private initiative which aims to deliver new treatments for brain disorders. He calls it a “superhighway of brain science.”
The television program BioCentury This Week aired a program with Dr. Tom Insel, Director of the National Institute of Mental Health, Dr. Paul Wang of Seaside Therapeutics, and Patrick Kennedy. Their discussion highlights Fragile X research as the model for Kennedy’s Moonshot initiative.
As Dr. Insel notes, ”The time is right to do this. Now it is time to understand the diseases and how they come about.” He calls Fragile X research “tremendously exciting … the prototype” for how to proceed.
Seaside’s Dr. Paul Wang: “We’re building the rocket. We’re on the cusp of taking those research breakthroughs into treatments.”
FRAXA’s game plan has been precisely this! We first funded basic science to understand Fragile X and then supported the most promising leads, all the way to clinical trials. Fragile X research is leading the way toward treatments for brain disorders from autism to Alzheimer's.
You can view the program at http://www.biocenturytv.com
5/30/11 A website to help parents of fussy eaters:
Don't let the name fool you. This charming website makes nutritious food appealing to boys and girls: www.littleladieswholunch.com
5/30/11 Free Summer Sports Programs!
The City Parks Foundation runs free tennis, golf, and track & field in all 5 boroughs. 718-760-6999 or http://www.cittyparksfoundation.org
The NYJTL offers free tennis programs in all 5 boroughs for children 6-18. 347-417-8156, http://www.nyjtl.org/play-tennis-now/community-tennis-program.html
The Urban Park Rangers offer free outdoor programs that include hiking, canoeing, birding, and fishing activities for families. 212-360-2776, http://www.nycgovparks.org/sub_about/parks_divisions/urban_park_rangers/pd_ur.html
The R.H. Macy's Fishing contest runs from July 13- 17, 10am-4pm and is open to children 15 and younger. Equipment is provided, or bring your own. All fish must be returned to the lake alive. http://www.prospectpark.org/calendar/event/fishingcontest
Big Apple Games, sponsored by the Public Schools Athletic League, runs Monday, 7/11-Thursday 8/11, Monday-Thurs, 1:00pm- 5:00pm and 6:00pm – 9:00pm. Open to students in the 9th to 12th grades. 718-707-4226. http://www.psal.org/psalsports/games/AppleGames.asp?menu=bigapple
6/1/11 Social stories – over 200 for free
http://www.oneplaceforspecialneeds.com/main/library_social_stories.html
Reprinted with permission of One Place for Special Needs. www.oneplaceforspecialneeds.com
6/10/11 OPWDD Commissioner's Statement on Putting People First
To read the Commissioner's statement, go to: https://docs.google.com/viewer?a=v&pid=gmail&attid=0.1&thid=1306b12a45cd8f9b&mt=application/pdf&url=https://mail.google.com/mail/?ui%3D2%26ik%3D799e09e9e8%26view%3Datt%26th%3D1306b12a45cd8f9b%26attid%3D0.1%26disp%3Dsafe%26zw&sig=AHIEtbTmQjDAaldOaNN14ca2_qz-QLtMoQ&pli=1
6/27/11 UCP Project Connect
United Cerebral Palsy, 1-877-UCP CONNECT, projectconnect@ucp.org, www,ucpnyc.org, offers numerous services for qualified individuals: medical services in all 5 boroughs, rehabilitation and specialty services for adults, residential services in all boroughs except Queens, housing assistance in all 5 boroughs, access to home (up to $21,000 for home modification), home assessments, family reimbursement, after-school programs in Brooklyn and Manhattan, and many other services.
6/27/11
8/11/11 The Proposed 1115 Waiver – People First Initiative
For the latest information on this proposal, go to: http://www.opwdd.ny.gov/2011_waiver/waiver_NASDDDS_news_brief.jsp
For a copy of the brochure explaining the new waiver: http://www.opwdd.ny.gov/2011_waiver/images/waiver_brochure.pdf
For a list of the proposed changes to the waiver: http://www.health.state.ny.us/health_care/medicaid/redesign/docs/2011-02-09_meeting_handout_-_redesign_proposals.pdf
Future Profilz Text….
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