SibsNY goes STRAIGHT to the White House

SibsNY has been very concerned about the deals being made in Washington. We are all concerned about how this affects our disabled loved ones and have become determined to advocate feverishly so that drastic cuts WILL not be made. We took our question regarding Medicaid STRAIGHT to the White House and received a *slightly* relieving answer. Check out SibsNY on the White House blog. Although Medicaid will not initially be cut, we've already had some cuts and could potentially have more. We all need to continue to advocate and get our concerns heard! Check us out in the link below!

http://www.whitehouse.gov/blog/2011/08/02/office-hours-8211-or-american-people-won-compromise-jason-furman-answers-your-questi?utm_source=wh.gov&utm_medium=shorturl&utm_campaign=shorturl

Possible Medicaid Cuts: What can you do?? A LOT!! Read below.

A big thanks to The Arc Blog for putting together a "What you can do" when dealing with possible Medicaid Cuts.

SibsNY has attended some information sessions and this is SCARY stuff!!! We can all deal with cuts here and there and we can tighten the belt, but we've already had loads of cuts and these new cuts are going to SEVERELY, SEVERELY alter the quality of life for our family members and friends.

Check out their blog: http://blog.thearc.org/2011/07/20/possible-medicaid-cuts-and-what-you-can-do/ and ACT NOW!

Letters and phone calls from family members are soooo affective (advice from a previous Congressman).

Medicaid in Jeopardy! Calling all SIBS! Better Late than Never!

The Staten Island Developmental Disabilities Council
Due to significant proposed cuts to Medicaid the services that people
with developmental disabilities and their families receive are in
jeopardy!
"The Future for People with Special Needs is Happening Now"
"Join our efforts to preserve New York State's service model"

Your influence is important and your help is crucial!
"People First Grassroots Effort" Information Session
July 26,2011
7:00 PM - 9:00 PM
College of Staten lsland/Center for the Arts (1P)
2800 Victory Blvd. SI, NY
Make informed decisions ... Come to learn:
How Medicaid provides essential services enabling your child,
sibling, friend and neighbor enjoy a full and rewarding life
How the proposed 1115 Medicaid Waiver will dramatically change this
service system
How recent and proposed budget cuts are unraveling forty years of
progress
How you can have a voice. No Voice! No Choice!
For more information, or to RSVP, please contact the Council office at (718) 983-5276,
contactsiddc@siddc.org

Here are the final details for the book group!

Book discussion on “The Way Things Look to Me” by Roopa Farooki
Wednesday, September 21 from 7-8:30pm
Brooklyn Public Library's Central Library location

Central Library
10 Grand Army Plaza
Brooklyn, NY 11238
t. 718-230-2100

For those who prefer to borrow than buy their books, you can find a copy of the book at your local library - http://www.worldcat.org/oclc/651912965

And if you're buying the book from Amazon, you can support the Sibling Support Project via their store - http://astore.amazon.com/thesibsuppro-20

Looking forward to seeing you in September! Enjoy reading!

The Way Things Look To Me

Looking for new literature to read (and a fun a meetup) that is Sibling related? One of our Siblings has recommended "The Way Things Look to Me" by Roopa Farooki.

Someone else who enjoyed reading it is Carrie Banks, a librarian at Brooklyn Public Library, that organized one of our two-day sibshop training recently.

She thought it would be a good idea to have a book discussion on it!! And to create a fun evening with Siblings!!

Save the date: Wednesday, September 21 at 7pm. More details to come so STAY TUNED and get reading! ;-)

Summer Event: Trivia Night!

Hello New York Sibs!

Fancy meeting new siblings living in New York? We're getting together August 22nd for Trivia Night and would love to see you there! Get ready for Stump Trivia on 8/22! We will gather as a team for a trivia showdown against the Massachusetts Sibling Support Network (the MA version of sibsNY). They will be meeting in Massachusetts for their own Trivia night. We will meet at 8 p.m. at Whiskey Town, 29 East 3rd St. (b/t 2nd & Bowery) http://whiskeytownbar.com/. Trivia starts promptly at 8:30. Please let us know if you will attend, as head count is important! Please contact Emily Holl who is making the reservations. Emily.Holl@yai.org

Hope to see you there!!

Register Now: Sibling Conference, Aug. 7 & 8 in Greenwich, CT!

proudly present the

International Sibling Conference: Exploring the Rewards and Challenges of Having Family Members with Disabilities

Saturday, Aug. 7
& Sunday, Aug. 8, 2010

The Hyatt Regency Hotel, 1800 East Putnam Ave.
Old Greenwich, Connecticut

Featuring keynote speakers:

Don Meyer

Director of the Sibling Support Project

Chris Burke

best known for his role as Charles "Corky" Thatcher

on the hit ABC-TV show "Life Goes On”

Cheryl & Clarence Wills

Cheryl, anchor and reporter, NY1 News and her brother

Clarence, a talented artist who has autism

Dr. Tamar Heller

Professor and Director,

Institute on Disability and Human Development,

and of the Rehabilitation Research and Training Center

on Aging with Developmental Disabilities at the University of Illinois at Chicago (UIC);

and

Tia Nelis

Vice President of Self Advocates Becoming Empowered

and Self-Advocacy Specialist, UIC.

The International Sibling Conference will provide the siblings of people with disabilities, individuals with disabilities, parents, spouses/partners and professionals in the disability field opportunities to share stories and information, gain insight on sibling experiences, and to learn more about current research and best practices in the disability field.

To register for the International Sibling Conference or for more information, please visit http://www.siblingconference.org/ or contact Dr. Robert J. DiDomenico, Conference Coordinator, at 203-324-9258 ext. 3014, or didomenicor@arict.org.

Make Your Voice Heard for a New Sibling Book!

Don Meyer, Director of the Sibling Support Project, and I are writing a new book for siblings of people with disabilities tentatively titled, "The Sibling Survival Guide." We are very excited about this new project and we want to write a book that really meets the needs of sibs everywhere. Let us know what you would like to see by taking this brief survey. Thank you!

Saturday, April 10 is National Siblings Day!

Saturday, April 10 is National Siblings Day! Take some time on this special day to honor your sibling and yourself! Please:

- Write something about your sibling and yourself here!

- Visit sibsNY on Facebook and post something about your sibling, the relationship you share, or how you're going to celebrate Sibling Day on the sibsNY page!

- Check out other sibling stories from across the country at the Sibling Support Project!

Job Opportunity

Part-time job at the Self-Advocacy Association: NCI Survey


The Self-Advocacy Association of NYS is looking to hire someone part-time to help us administer a consumer survey to people using OMRDD services. The work will involve arranging survey interviews, and supporting a self-advocate surveyor in conducting the surveys. The populations surveyed will include: Day Hab participants, Family Supported clients, Family Care clients, & Self-Determination/Consolidated supports participants, as well as family and staff members of people with developmental disabilities.

The surveys are a part of the National Core Indicators (NCI) project, whose purpose is to identify and measure core indicators of performance of state developmental disabilities service systems. The NCI project is vital in helping determine where NYS (and various regions within NYS) stands in its delivery of services and supports to people with developmental disabilities as compared to other states. Currently, around 30 states participate in NCI. 



Specifically we are looking to hire someone:

- With experience in the developmental disability field, such as a parent, sibling, or staff

- Willing to work part-time (10-15 hours/wk)

- Who is comfortable working with and supporting self-advocate surveyors

- Who is able to travel around the Bronx and Manhattan

- Who is able to work during daytime hours during the week

- Who is available to work until the end of May 2010

Note: Please do not apply if you currently have a full-time day job!

The job will last either until the end of May 2010, or potentially earlier if the surveys are completed ahead of deadline. Pay is $13/hour and travel will be reimbursed.

If you are interested in this position, please email your resume, a cover letter, and the days and hours you are available to work during the week to Rachel Hayward at rhayward@sanys.org.

October Screenings of "Rachel Is" by sibling Charlotte Glynn

Join us for a screening of Rachel is, by filmmaker and sibling Charlotte Glynn!

Manhattan: October 7, 6 p.m.
Anthology Film Archives (2nd Street and 2nd Ave.)
This screening will be followed by a brief discussion organized by YAI/National Institute for People with Disabilities.

Westchester: October 14, 6 p.m.
The Jacob Burns Film Center, Pleasantville
This screening will be followed by a discussion organized by the Westchester Arc.

Rachel is - an honest, heartbreaking and funny film about disability, family ties and the universal struggle for happiness.

In her feature directorial debut, Charlotte Glynn moves home to chronicle the last year of school for her sister, Rachel. Rachel has a developmental disability. Rachel is mysterious, funny, difficult and full of contradictions. Without the skills to comfortably inhabit adult life, and with limited services to help her develop them, Rachel and her family don’t know what she will do when she finishes school. Yet what Rachel longs for most is what most people her age want – greater independence – a seemingly impossible dream that is taking its toll on her family relationships.

Rachel is moves past the safety of political correctness and into the most intimate and honest moments in one family's life as a sibling searches to understand how her sister with a disability sees the world and how the world sees her.

www.rachelis.com

Sibling Leadership Network Response to the Passing of Senator Edward Kennedy

The following is a statement by Dr. Tamar Heller, Professor and Head of the Department of Disability and Human Development in the College of Applied Health Sciences at the University of Illinois at Chicago. Dr. Heller is a member of the Steering Committee of the Sibling Leadership Network (SLN). For those of you who may not be aware, she and several siblings from the SLN met with Senator Kennedy at our first conference in 2007 and had a chance to talk to him about the importance of siblings to people with disabilities.

It is indeed a sad day with this country losing such a strong advocate for people with disabilities as Senator Kennedy. I treasure the time that I and a small group of us had the opportunity to meet with him in his office to discuss the needs and concerns of siblings of people with intellectual disabilities. As a brother of a sister with intellectual disabilities he expressed a passionate interest in the topic, emphasizing his commitment to addressing this issue and his interest in our nascent Sibling Leadership Network, which was having its first national meeting that week in DC. With his charm and glistening blue eyes, he graciously gave us his attention and beckoned his photographer to snap some pictures of us with him. I think we will all remember the excitement we felt at that meeting and mourn the loss of this great statesman.

-Tamar Heller, Ph.D.

Great Sibling Article

This article captures many aspects of the sibling experience and quotes some national experts - definitely check it out! http://www.mysanantonio.com/news/Life_is_tough_when_sibling_has_disability.html

sibsNY.org Update

I am happy to report that we managed to update our still-new Web site http://sibsny.org to make it more comprehensive.

Many folks are writing in to inquire about services in their local areas, especially upstate. I encourage everyone who is looking to connect with or start sibling services in their local community to post on http://groups.yahoo.com/group/sibsNYcommunity/ because people in your community are the best sources of information on local resources.

Moving Forward Statewide

It has been too long since my last post - where is the summer going and why is it movnig so fast?

As you can see from the photos below, our May 7 Sibling Day at the YAI Conference was wonderful. Don Meyer was an insightful, funny and fabulous presenter and we were thrilled to have him with us.

During our sibling day, in addition to the wonderful presentations, a number of siblings and professionals who work with siblings from across NY State met to discuss sibs' concerns, priorities, and needs for information and resources to help their brothers and sisters with disabilities enjoy the highest quality of life -- while enabling themselves to do the same. We identified five key areas of need:

• Outreach and training for young siblings (e.g. through Sibshops)
• Service system navigation
• Connecting with other siblings in person and online
• Future planning
• Advocacy

Moving forward, we hope to be able to connect with siblings and service providers across the state to create a comprehensive network of resources for siblings. If you are interested in being part of this, please let me know.

Sibling Support on TV Thursday May 28!

Don't miss a special episode of "A Place of Our Own" on your local PBS station on Thursday, May 28. The episode, "Supporting a Parent and Sibling of a Child with Special Needs" features Don Meyer, Director of the Sibling Support Project, and Sibshops. For more information and local listings, visit http://aplaceofourown.org/schedule.php.

"Thicker than Water" - Great New Collection of Sibling Essays!

I am so excited to share this great new collection of 39 essays written by adult siblings of individuals with developmental disabilities and edited by Don Meyer. It's called "Thicker than Water" and it incorporates a variety of perspectives on so many different topics pertaining to having a sibling with a disability. The authors (myself included, I have to confess) range in age, geographic location and background. No two voices are the same, which makes for a truly delightful read. I am learning so much about my co-contributors, many of whom I have met and now know in a whole different way, and about different takes on the sibling experience. Siblings, parents and professionals will enjoy this book and learn a lot. All proceeds benefit the Sibling Support Project and you can help even more by ordering through the Sibling Support Project store at Amazon. Read this and enjoy!

Scenes from the Sibling Day at the YAI Conference, May 7, 2009

Sibling Day is Almost Here!

May 7 is just around the corner and I am getting really excited for our Sibling Day at the YAI Conference. Every year this turns out to be a special day when siblings from all over get together to hear presentations, share stories and just be with others who have had similiar experiences, feelings and thoughts. There is nothing quite like the bond that the siblings of individuals with developmental disabilities share! And this year we are lucky enough to have Don Meyer, whom I always refer to as the "Father of the Sibling Movement," with us. He is one of my favorite people on the planet and a pleasure to be around. We end the day by getting together for dinner at a restaurant in midtown, within walking distance of the hotel. It's a great way to kick back and recap a wonderful day. I hope to see many of you there!

Don Meyer Training at the Brooklyn Public Library May 8 & 9

On May 8 & 9, after a fabulous sibling day at the YAI conference, Don Meyer will conduct a two-day Sibshop training for siblings, parents and service providers. Find out more at http://siblingsupport.wetpaint.com/page/Workshop+Series - Don doesn't get to NY very often so please take advantage of this wonderful opportunity! Hope to see you there!