Wednesday, November 4, 2009

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

Wednesday, September 2, 2009

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.

Thursday, August 27, 2009

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.

Friday, August 21, 2009

Great Sibling Article

This article captures many aspects of the sibling experience and quotes some national experts - definitely check it out!

Wednesday, July 22, 2009 Update

I am happy to report that we managed to update our still-new Web site 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 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.

Wednesday, May 27, 2009

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

Tuesday, May 19, 2009

"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!

Tuesday, April 14, 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!

Tuesday, March 31, 2009

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 - Don doesn't get to NY very often so please take advantage of this wonderful opportunity! Hope to see you there!

Saturday, March 21, 2009

The Sibling/Parent Disconnect: An Age-Old Issue

The other day, my supervisor told me that he found a book in the swap pile in the laundry room of his apartment building. It was called "It Isn't Fair: Siblings of Children with Disabilities" (you can find it here, on Amazon). Although it was first published in 1993 by Exceptional Parent Press, the cover photo suggests the 80s and the content goes back to as early as 1972. It was really interesting to read an article orginally published in Exceptional Parent magazine which was an interview with four siblings in their 20s. Many of the issues resonated with me and it struck me that sibling issues are shared by sibs not only across state lines and oceans, but across the decades. What was even more interesting to me was the case studies with parents, who often had no clue about what their typically developing children were feeling and why. Although they had a real desire to help their children, they genuinely had a lot of trouble understanding how having a brother or sister with a disability was impacting their other children. I believe that holds true today, based on the conversations I've had with many parents and even from reading a recent book chapter by a parent advocate. Reading his accounts of raising a child with autism and his typically developing brother, and seeing the boys' relationship through their father's eyes, was a bit unsettling. The concept of "fair" is tricky to begin with, but it seemed to me that there were some pretty high expectations for a typically developing three-year-old, without a lot of understanding of HIS special needs. This is why it is so important for siblings to share their stories with parents, service providers, and each other. We have a lot to offer our brothers, sisters and families. With the right amount of encouragement, support and room to grow into our own selves, siblings can play a very positive role throughout their siblings' lives.

Friday, March 13, 2009

Reduced Hotel Rate - YAI Conference

From the YAI Confernce (it was a battle but they succeeded):
We are pleased to inform you that the Crowne Plaza Manhattan Hotel has agreed to offer a reduced rate of $255.00 (plus applicable taxes) per night for YAI conference attendees. To receive this rate call ASAP and no later than April 10. If you have already reserved at the higher rate the Crowne Plaza has informed us that the rate will automatically be adjusted to $255.00. To make a reservation call: 1-800-243-6969 and ask for the YAI Conference Discount Rate.

Thursday, February 19, 2009

May 7: A Day for Siblings with Don Meyer at the YAI Conference in NYC

A Day for Siblings: Thursday, May 7, 2009
at the YAI/NIPD Network International Conference
Crowne Plaza Manhattan Hotel, Times Square, NYC

Don Meyer, Director of the Sibling Support Project,
Brothers and Sisters of People with Special Needs:
Unique Concerns, Unique Opportunities
This core workshop, led by Don Meyer, world renowned expert on sibling issues and creator of Sibshops, uses a lively large-group discussion format to help adult siblings of individuals with developmental disabilities, parents and service providers discuss the concerns and opportunities frequently experienced by brothers and sisters of people with special needs. Workshop participants share what they have observed in their families or the families they serve. Participants also learn what researchers, clinicians, and siblings themselves say about growing up with siblings who have special needs. Implications for parents and service providers will be discussed throughout the workshop. Session #147, 10:30a.m.-12:00 p.m.

Future Planning: Talk to Your Parents Now!
Siblings’ Stories of Different Approaches and Outcomes

Today, individuals with developmental disabilities are living longer than ever thanks to better community services and supports. As parents age, siblings often take on greater caregiving activities and worry about the future when parents are gone. A panel of siblings will discuss the importance of future planning and share the very different approaches their families took as well as outcomes.
Session #131, 9:00-10:15 a.m.

Sharing the Sibling Experience:
Individuals with Developmental Disabilities and their
Typically Developing Siblings Discuss their
Past, Present and Future Together
Siblings often share the longest relationships and most special bonds. During this session, siblings with and without developmental disabilities will share their thoughts and feelings about their past, present and future together. Attendees will enjoy hearing their stories and experiencing what all of us can learn from one another.
Session #152, 1:15-2:30 p.m.

At the end of the day, presenters and attendees who would like to continue to share stories will gather for a casual dinner. Information on location and cost to follow.

Download the conference brochure and registration form (p. 23 of brochure) at Please fax registration forms to Tina Sobel, 212-629-4113. Family members of individuals receiving services through the YAI/NIPD Network and our staff attend for free. Student and group discounts available. For more information on sessions or the dinner, please contact Emily Holl, 212-273-6534, or

Tuesday, February 17, 2009

Leadership Training Opportunity for Siblings

Here's a great opportunity! The LEND (Leadership Education in Neurodevelopmental and related Disabilities) Training Program at Westchester Institute for Human Development and New York Medical College, in Valhalla, NY, provides an opportunity for adult siblings to develop leadership knowledge and skills in the area of developmental disabilities. LEND trainees are an interdisciplinary group of health and education professionals, graduate students in the health and education professions, and “family specialists" (parents and adult siblings of people with disabilities) who go on to leadership roles in advocacy, clinical work, education, policy-making, research and training. For more information: call 914-493-8175 or go to

Saturday, February 7, 2009

Scholarship Opportunity for Sibs in NY!

I just learned about a great opportunity. AHRC, an agency in NYC that provides services to individuals with developmental disabilities and their families, has a $1000.00 scholarship for siblings called the Gorelick Scholarship. It is primarily for educational purposes, not limited to attending school. This is a great (and rare!) opportunity, so check it out if you think you might be interested! Go to the AHRC Web site, click on the "siblings" icon and the information is first on the page, where you can also download the application.

Thursday, January 22, 2009

Don't Wanna Be a Sib Today

When it comes to being the sibling of an individual with a developmental disability, I am about as positive as they come. People who have met my brother Peter might understand why. I adore my brother and I appreciate how well he knows me, in his own way, and his unmistakable, unconditional love. I embrace the role that I will assume -- that I am beginning to assume, really -- in helping to ensure that he can be as independent, productive and happy as possible in the future.

However, on some days, I am overwhelmed by the responsibility and resentful of my role as a sibling which I did not entirely choose. These are the days that I wake up and say, "I don't want to be a sib today."

The day after Peter departs from a weekend visit is usually one of those days.

His most recent trip to NY was a blast. As soon as I saw him at the train station, ambling toward me wearing a giant smile, a familiar rush of happiness washed over me. "There's my brother!" I thought. During the weekend we enjoyed a hockey game with friends and family, ate enough junk food to last us both a good while, and spent time with a new friend of Peter's who we are hoping will one day be his housemate. Just seeing the two of them together -- talking about movies and impersonating actors, savoring chocolate cake, laughing at each other's jokes -- was entertainment in itself.

As much fun as we always have together, Peter's visits usually entail a good deal of work and some degree of worry on my part. There are hygiene issues to consider (after a sweltering summer day some years back, when I thought that Peter was going to take out an entire subway car by virtue of his raised arm, we have created a whole shtick regarding deodorant that cracks us both up every time), and reminders about subway safety. There are social cues that he will sometimes miss, and situations in which he would literally talk about baseball for hours, regardless of audience or the conversation they may have been having, were it not for my attempts at tactful intervention. There are stops along our way to buy bottled water or potato chips, and conversations about why it is just not necessary to buy six of each, right now, just because they are on sale. There is the wake of empty water bottles and crumpled napkins throughout the apartment.

I know that compared to many siblings who have brothers and sisters who require way more fundamental, hands-on care, I have it pretty easy. But by the time Peter leaves after a visit, my internal fuel tank is usually empty and I wake up the next day not wanting to have anything to do with being a sib.

So what do I do? I let myself off the hook and give myself a break. I push thoughts of Peter and the unknown future to the back of my mind, and focus on other, preferably lighter things. I read a novel or a vapid entertainment magazine. I go for a run. I shop with friends. I do something that makes me happy, something to put fuel back in the tank and take care of me.

Many of the siblings I've met over the years have had a really hard time with the idea of putting fuel in their own internal tanks. The idea of doing something purely for their own enjoyment seems selfish to them. I can completely relate, because I used to feel the same way. How could I possibly sit around and ENJOY myself when there was so much that I could be doing to help my brother?

Somewhere along the line I realized that if I didn't take some time out to take care of me, I was going to burn out and be unable to do anything for anyone, least of all Peter.

So now on the days that I wake up and that little voice inside says, "Nope, don't wanna be a sib today," I listen to and indulge it, knowing that when I am ready, I will put one foot in front of the other and continue along the path that will hopefully lead to a bright future for both of us.

Thursday, January 8, 2009

Coming Together from Different Places

The new year is off to a very busy start, but I finally managed to add some links that I think will be helpful to sibs. If anyone has recommendations for other useful blogs or Web sites, please do share.

It is amazing that, once you start looking, you find that siblings everywhere are writing, posting, linking and gathering in order to connect with one another and to share information and support. However, I know from working in the disabilities field and from talking with other siblings and people who coordinate sibling groups across the country that there are far too many sibs still out there who desperately need information and support in order to move forward in their lives, and to be better equipped to play a positive role in the lives of their brothers and sisters.

One of the reasons that I think it can be difficult to find, reach out to and connect with siblings is that we are all in different places in terms of our identifications and roles as siblings. Some of us don't want to think of or identify ourselves as sibs, or have this part of our identity overshadow the many other facets of who we are.

For many, the identification as a "sib" is not made until the caregiving role is inflicted upon us by the illness or death of a parent or two, when we suddenly have an urgent need for information and resources in order to step in as caregivers. Too often this is the case. I will never forget a sibling from Rhode Island I met a few years ago, who told the story of when her mother, a widow, passed away. "I didn't even have time to mourn the death of my own mother," she said. "I had to jump on the phone figure out what I was going to do about my sister; where she was going to live and how she could get the support she needs." It broke my heart, and I have heard too many similar stories since then. That is why we so urgently need to connect with each other, government and service providers to make sure that siblings can get the information and resources they need to avoid this kind of crisis.

Other siblings are very involved in the lives of their brothers and sisters with developmental disabilities. They spend time with their siblings -- one brother and sister I know love to play board games together -- talk on the phone, or find other ways to communicate. Some attend planning meetings with service providers, or have strong relationships with the staff at their siblings' group homes or other programs. Sadly, I have also met siblings who are so involved in their siblings' lives that they have forgotten about their own. This doesn't always seem like a choice, I know, but in an ideal world every sibling would have access to the information and services they need to ensure the health and happiness of their siblings AND themselves. A little independence for both siblings can go a long way.

I have chosen to be very involved with my own sibling (people who have met Peter say they can see why - I admit that he got most of the charm in the family) and in the sibling movement. I am aware that I have made this choice because I had the freedom to do so, and that it was truly a choice. Growing up, our parents never expected me to play a caregiving role, which I know is not always the case and which I appreciate to this day. They encouraged me to go out, pursue my interests and live my life. Without this independence, I don't know that I would now so willingly take on the daunting task of helping Peter move to be closer to me, or be writing this blog.

So siblings are in different places and have different needs. The goal is to create a place -- or ideally, many places in states, cities and communities across the country and around the world -- where siblings can access the information, resources and support they need to be great siblings and, most importantly, lead happy and fulfilling lives. You will see from some of the links that I added that this is starting to happen. A hopeful start to the new year!