Colleen Brown, Class of '02

Before being a partners graduate, I thought I was pretty good at facilitating and leading support groups. I thought I could pretty much start anything that was a passion and follow through on it. Now as time has passed and maturity has begun to set in, I realize how much Partners helped me become the person I am today. The broad span of knowledge and speakers we experienced has never been met again by any conference or workshop I have attended. The ability to practice our public speaking skills on topics we felt compassionate about in a supportive atmosphere was something each partner needed.

I was not employed when I graduated from Partners. For the last 5 years I have been employed by The Advocacy Center as the Public Education Coordinator, providing presentations to the community on disability awareness along with the speakers bureau I coordinate. I would not have had the skill base needed for this job if not for the Partners program. Through my current position with the support of the speakers bureau, we are able to reach approximately 3,000 people a year in our community, hopefully promoting change in attitudes toward people with disabilities.

I thank the DDPC for having such a wonderful program that reaches far and wide in many ways I am sure they are not aware of.



Colleen Brown,

Parent of a child with a disability

About Partners in Policymaking

Partners in Policymaking, an advocacy training program for adults with developmental disabilities and family members of people with developmental disabilities was started in 1987 by Colleen Wieck and the folks she worked with in Minnesota. This extraordinary group of people felt that if parents and self advocates had the appropriate skills and information, they could improve the lives of people with disabilities in their communities, in their states and the nation.

In the US Partners in Policymaking is federally funded through the Developmental Disability Act and administered through each states DD Council. In NY it is funded byt the Developmental Disability Planning Council and directed by Joyce Steel of The Advocacy Center.

I applied to be in Partners in 2002 and was accepted so one weekend a month for 8 months I made the 4 hour trek to the state capitol (Albany) to take my course. There were lessons on public speaking (“the microphone is your friend!”), person-first language, building life-visions, inclusive education, housing, community-building, the legislative process, rights, advocacy skills and more. We learned to speak publicly, to present testimony and to be attentive to each others strengths as well as accommodate each others' needs.

Partners in Policymaking is a leadership program and the presenters on each topic are top-of-the-line. My class heard Deborah Whitfield on person-first language and disability history, Al Condeluci on community inclusion, Lou Brown on transition and employment, Tom Harmon from the NYS Commission on Quality Care spoke about Willowbrook and taught us how to give public testimony, Pat Johnson from NYS CQC as well spoke about New York’s legislature, Jean Tellier spoke about housing issues, Curt Decker from NDRN taught us how a bill becomes a law and about working with legislators. And the list goes on: Rob Davies then at OMRDD spoke about housing issues and rights, Carol Blessing spoke about transitioning to adulthood and Sue Cullen presented on self-determination.

Cutting-edge ideas and principles are taught every year. Some classes have the opportunity to hear different speakers.

Being away once a month wasn't terrible either! It was always hard to disengage from my home life, but they were fine and so was I!

And as good as the presentations were, the relationship that was built between my classmates was by far the best part! I shared my Partners class with and extraordinary group of people. We were a diverse group—many races and religions were represented, there were people who came from the largest city in the country and from towns so small you can’t mapquest them, and we had a vast variety of ability levels.

At the first session, like most people, we circulated the room looking for people just like us to hang with, but as the sessions went on common ground was built and all of us expanded our definition of “just like us” to include everyone else. That diverse group of folks became a support system—-I can’t tell you how many times an issue would come up at home that I would tag to discuss when I got to Albany (and I can’t tell you how much I missed that when it was over!)

We learned to talk so that all of us could understand and we supported each other so we all shone—I helped one of my Partners remember to take his meds and he kept me on time schedules (He still does today. Thank you Jason!)

And those relationships continue today—with our own class and with the other graduates from across the state. In NY we have a graduate website and list-serv and when I am taking up a new project the phone line from here practically burns up with calls to the Partners I know who have experience with my situation in their town. We frequently unite on common issues as well. Among other things we have rallied for IDEA, in support of a family who lost their son who had autism to abuse, and we took part in a phone/fax campaign on burden of proof last year.

Let’s see, have I said it all? Great speakers, awesome content, leadership skill practice, full-immersion diversity training, ongoing friendships and a dynamic statewide network…

And do I have to say that all of this experience is an asset in your whole life?

The only thing left to say is: Find the program in your state, apply, attend, and learn to conquer the world!

I invite other Partners grads to share additional information and thoughts--just click on the comments button below!

Julie Buick: Last Year--Autism Awareness Month

During Autism Awareness Month I have invited some of my friends who know autism far better than I do to post on my blog. The following is an interview with my friend and fellow Partners in Policymaking graduate, Julie Buick. Julie graciously spent a couple of hours this week regaling me with stories about herself, her family, her thoughts on Autism and the importance of community.

Tell us about yourself and your family:

I'm a mom. A wife, a mom and an advocate. I have 3 children: a 13 year old daughter, and 2 sons who are 9 and nearly 6 years old.

And we can't forget my husband, Bill. He's my rock! We have been together for 19 years!

My 2 boys both have Fragile X and Autism. Though they have the same diagnosis, they are completely different. One of them has issues with OCD, stimming, sensory processing disorder and lots of allergies--the other has different symptoms and needs.

Autism is the fastest growing developmental disability with--as yet--no known cause or cure. It affects 1 in 150 children. A new case is diagnosed every 20 minutes. This year there will be more children diagnosed with autism than AIDS, diabetes and cancer combined.

What do you want folks to know about?

I think the most important thing is the community and belonging. We want a community that will accept and welcome our boys and treat them like we do. We aren't going to be around forever--the community needs to be ready.

We work toward inclusion for both of our boys. They go to different schools and they are progressing toward inclusion. Last year my older son was in a situation where his classroom was "in" a school, but not part of it at all. This year is different. This year his classroom "belongs" to the school--kids say "hi" and spend time with him. He is so much more excited to be there--he walks taller. His team and their faith in him make all the difference.

I do a lot to help get the community ready--for my kids, and for all kids with all disabilities. I give talks to teachers and schools and at local colleges about disability awareness and autism. I talk about individualizing, having a can-do attitude. If I can just educate people I can take the fear out of the unknown.

I tell them that for us autism is just a label for services. We don't deal with autism at home. We just accept our kids for who they are.

I think accepting them is key. People always ask me how I cope and I tell them I don't. It's not "coping" if you accept your children. We definitely do different things for our kids than we would if they didn't have autism but it's because 'Bobby needs this' or 'Billy likes that,' or ' Katherine wants something else.' Every parent and every child wants or needs different things in any family. That isn't "coping," it's parenting!

I don't have trouble with "coping." I do have trouble finding enough time to do all the things I want to, but everyone says that!

What is the role of advocacy?

Advocacy is crucial--and it isn't a coping skill either! Advocacy is not a choice--it is the way you get everything, change everything, and make things work.

All parents advocate for their kids at some point. It's just what you do,

I know you always have lots going on--what are you working on lately?

You have to understand that I do take on a lot because I CAN. Not everyone can or wants to do all this depending on their life and their child, what's going on at home, etc.

I have great support at home--my husband enjoys being at home with the kids and supports my efforts.

I worked overnights for years so I would be home during the days for meetings and such. I still work for the same agency, but now I work at the Pieters Family Life Center which is a community center (totally inclusive!) In my job I get to run SibShops, a Spectrum Family Support Group and more.

Outside of work, I am:
• a presenter with The Advocacy Center providing disAbility awareness presentations in our community through the speakers bureau,
• Vice President of Operations for UNYFEAT (Upstate New York for Effective Autism Treatment which is the largest not-for-profit-501(c)3 in the Rochester area) Right now we are working to bring the nationally known organization Lose the Training Wheels to Rochester for a clinic this summer.
• Autism Speaks Chapter Advocacy Chair for Upstate NY region is yet another hat that I wear and a very important one. My Autism Speaks hat is the one which helps get much needed money for research.
• Training for a 10k run!

Autism costs our nation 90 billion a year and that is expected to double within the next decade. Our communities and our nation cannot afford NOT to know about Autism.

We need to raise awareness, find answers through research and provide appropriate educational services to teach life skills so that our kids become productive, healthy, happy adults, working, playing and living in our communities.

Now is the time to make a difference!

Any closing words?

I love this quote:

Never doubt that a small, group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has. - Margaret Mead

Surfers Healing Montauk: A Chat with Helene Fallon

Helene graduated from NY Partners in Policymaking in 2006. She is a parent of children with disabilities. Helene has a background in social work and became interested in educational programs as she pursued the programs her children needed. She now works under two grants funded by the State Education Department as a trainer providing technical assistance to families and school districts about special education and transition.

This September Helene and a team of organizations such as East End Disabilities and others hosted a Surfers Healing surf event for kids with disabilities and a very successful fundraiser.

I was in the area that weekend and I got to attend the events. I was amazed! First of all, this was my first time on Long Island. I had no idea that there was a place to surf in New York State! Secondly, this was a BIG event from beginning to end, so I talked with Helene to ask how they did it.

So Helene, how did you even get started?

Well, a couple years ago we heard about Surfers Healing and it seemed like a perfect idea for our area. We contacted the Paskowitz family who run Surfers Healing in California to see if they would consider coming here. When we found out they would, we put together a committee and got started. Long Island really needs recreational opportunities for kids with disabilities and Surfers Healing seemed like a great place to start.

We started small 2 years ago with a few surfers and our fundraiser that year and last year raised about $1000. Our committee was from all over the island and we were united by the over-arching goal of eventual sustainable recreation for kids with disabilities ‘on the island.’

This year they kicked it into full gear:

They had more than 100 volunteers (organizers, lifeguards, surfers and more.) And their fundraiser featured Jimmy Buffett—he has a house on Long Island and he and his staff are very dedicated supporters of kids with disabilities.

Despite questionable weather—overcast through the surfing, POURING through the (outdoor) fundraiser—they had 120 surfers this year and the Jimmy Buffett concert and silent auction raised more than $100,000. (I nearly drowned, but couldn’t have had a better time!)

AND!!! The first meeting to plan an ongoing swimming-sailing-kayaking program including kids with disabilities on Long Island was held in October!

Helene’s advice:

Rely on partnerships, connections, networking and teamwork. Keep relationships going by staying focused on the team’s goal.

-Don’t accept barriers. Find partners that share your vision and keep going!

-Focus on staying organized.

-Keep at it—amazing things can happen.

Cross posted from here.

Graduation Class of 2008: Colleen Charsky

First I would like to thank my fellow Partners for allowing me the honor of representing them today. As usual we have so much to say with so little time.

We would like to thank the DDPC for funding such an incredible program. The quality of presenters cannot be matched. Additionally the sense of confidence and empowerment that this program gave to us is priceless. It is equally vital to mention the importance and gratitude for allowing us to travel and physically meet with one another at least once a month. It is this face-to-face interaction that has allowed us to forge the bonds and shape us as individuals that will impact the disability community, and us, for years to come.

One person described how Partners impacted her this way: ”It has provided me with the tools to take my journey to the next level. Partners has taught me that no matter what I thought I knew, I was lacking in one very important area--the human experience. Through this very valuable program I have come to know and love my Partners, individuals from all different regions with a variety of experiences. I have learned that as humans we all have preconceived notions or biases. With the Partners program you are forced to leave all that at the door, and engage in each activity, lesson and experience equally as colleagues. What I most learned from the program is friendship comes in many shapes and sizes. Our common thread is our humanity.”

We would like to believe that as a result of the tireless efforts of Partner’s graduates and other advocates, there would no longer be a need for disability awareness and advocacy. But until that time Partners in Policymaking always should be continued.

To the speakers- we appreciate your willingness to take precious time away from your families to come and share with us. The information you imparted to us is priceless. Additionally, your genuine concern for our growth and to listen to our individual stories has not gone unnoticed.

Words cannot express the depth of our gratitude to Joyce Steele for the countless hours she has invested in us. She has done an incredible job in continuing to put together a first-class program each month. Joyce was always available and embodied a warm, caring, welcoming atmosphere. She touched our hearts and nurtured our dreams.
Thank you Joyce.

As for our families we’d like to thank you for stepping up and carrying an extra burden while we were away doing our important business. Your sacrifices have been one of the key factors for us graduating today. We’ve had to micro manage and coordinate our schedules, miss important events, and handle crises over the phone. But through it all, you were there to support and encourage us.

I felt in order to represent the class as a whole I would read some of their comments as to how Partners impacted them:

• I found out that I could be away from my family and they can do just fine without me.
• I made new friends at a time in my life when new friends are hard to come by.
• I now appreciate my own perspective and to know that sometimes we have more questions than answers and this is o.k.
• I have grown to become part of a community that advocates inclusion in all areas.
• I know that I am not alone in a world that can be isolating.
• I have grown to appreciate all the diversity in humanity that God has created and that each person is a miracle and a gift.
• I feel that I am a much better person because of this course. It has opened not only my mind but my heart as well.
• I learned we are all human and made mistakes along the way… and continue to make mistakes, but we are here to support each other.
• You can do more than you think you can. Challenge yourself! When you do, you accomplish much and you feel wonderful.
• Partners affected me as a person by increasing my comfort and confidence level in speaking to and understanding people with disabilities.
• I realized that sometimes we are our own worse enemy. Sometimes we are afraid to dream too big for fear of being let down. Sometimes we don’t want to take that big step of letting go, for fear of us, or even worse, our loved one being hurt or disappointed. Now I dream big and expect results.
• Partners helped me make new friends with people from all backgrounds, with different pasts and different challenges. I am so much more comfortable with new people as a result of the friends I've made here. I'm much more likely to help strangers now, too.
• It is my hope and desire to take the tools and the knowledge I have obtained in this Partners program, along with my drive, to make an impact not only with my son, but with other families of children who may need additional support.

and finally….

• Never underestimate the power of cookies!!


Therefore, as we prepare to end our training, let us pause for a moment and remember that when we first arrived, we were individuals with stories, now we are a team with a purpose and a vision for the future.

We arrived less prepared to overcome the obstacles as individuals, but now, we are equipped and energized to face these obstacles together. As a team, we now have strength, encouragement, hope, and determination upon which to draw. We have grown through this experience and are compelled to go forth with competence and confidence. We no longer stand alone, but unified as a team to improve our community, in disability equality, accessibility, and acceptance.

Thank you for the privilege of being your partner.

NYS Partners In Policymaking Class of 2008!!!!!!!!!



Updated to add pictures. Note State Senator Breslin in the top left corner!

Photo by JB, PIP Class of 02.