NY Partners in Policymaking: Plans for 2011

February 2010

Dear Fellow Partner,

You have probably heard about the new developments in the Partners in Policymaking Program. Yes, change is indeed in the air. After a brief hiatus, the program will begin again in 2011 with program components redesigned and delivered in a way to allow for outreach to a much broader and larger population. The original purpose and philosophy are intact and the program will continue as an exemplary leadership development opportunity for parents and self-advocates.

In response to a request from the Developmental Disabilities Planning Council to develop and evaluate an interactive distance learning format, The Advocacy Center and the Employment and Disability Institute at Cornell University have joined forces to design and test an interactive distance learning format for the Partners in Policymaking program. Some participants may meet face-to-face for a few of the sessions but the majority will be participating from their own homes or an independent off-site location.

This model complements the diverse learning styles and needs of the typical Partners audience and addresses barriers to participation that existed with the previous delivery format. The importance of social networking and community building as part of the Partners experience will be embraced and encouraged through quality instruction and opportunities using different modalities.

A common core curriculum will be used; however, three ways of delivering the training will be tested and evaluated:
one group will meet at Cornell University three times and on-line four times,
one group will meet at Cornell University one time and on-line six times,
one group will meet entirely on-line with no face-to-face encounters.
At the end of a three year period there will be an analysis of comparisons between the three groups and past Partners trainings. Recommendations will be made to the DDPC about the best possible delivery format for the training going forward.


Cornell’s Employment and Disability Institute and The Advocacy Center are pleased to have this opportunity to join forces to continue the Partners Curriculum and program. The Employment and Disability Institute at Cornell University will direct the development and evaluation of the research demonstration. Nancy Hinkley serves as the Project Director with support from Jeff Trondsen, Technology Coordinator; and Alexis Falise, Project Support Specialist. Joyce Steel continues to serve in a supervisory role at The Advocacy Center working closely with Jackie Yingling, the new Partners Coordinator. Jackie is the parent of a 26-year-old young woman who has developmental disabilities, a 2006 Partners graduate, and a long-time employee of The Advocacy Center. Anna Costalas from The Advocacy Center provides technical and communications assistance.

A new Partners website is in the works, and stimulating on-line training opportunities for Partners graduates will be included as part of that development.

We value your input and need your assistance as well. We hope you will consider the ways in which you can support the program. You can help in a number of ways:

1) Complete a survey assessing activities, technology needs, willingness to mentor a future Partner in your region, and preferences for webinar topic areas.

2) Visit the future New York State Partners in Policymaking website in June 2010, with portals for information sharing and training. It is currently under development. Your response to our survey will assist us in making sure the website is responsive to your needs.

3) Recruit new Partners for the 2011 class. You will receive a link to the application packet in late 2010.

The most important way to support the Partners program is to make sure you have accurate and up-to-date information about the program.

We appreciate your continued contributions and look forward to learning with you and discovering ways to improve the Partners program.

Should you have any questions about Partners coordination, please contact Jackie at Yingling@advocacycenter.com Please complete the survey by March 15, 2010.

Thanks very much.

Jackie Yingling Gives Testimony For Senate Finance Committee Budget Hearing

Good Afternoon,

Thank you, Senator Kruger, and members of the Senate Finance Committee for the opportunity to speak today regarding the Governor’s proposed deficit reduction plan. My name is Jackie Yingling. I live in Rochester, NY. I am the parent of a charming and engaging 25 year-old daughter, Rachel, who happens to have a developmental disability.

I am concerned about the proposed cuts to OMRDD Family Support Services and Local Assistance funding. These cuts would have a tremendous adverse effect on individuals with disabilities and on agencies such as The Advocacy Center in Rochester, NY. The subsequent negative effect on families will be devastating.

For over 5 years, my daughter was able to continue to live in our home only because of the supports provided by OMRDD Family Support Services and The Advocacy Center. If we did not receive those services, she would have had to have been removed from our home and placed in a residential setting. This would have been terribly traumatic for Rachel and our family. This would have also cost the State of New York many tens of thousands of dollars more.

Many families are in the same situation today. These people (voting citizens) are surviving with their family unit intact because of the supports and services they receive. Julie Buick, a fellow parent, asked me to tell you this: New York State cannot afford to cut services to individuals with disabilities and their families. Cutting funding for OMRDD will affect programs such as Family Support, Respite, Family Reimbursement, Individualized Funding, and Home of Your Own, as well as OMRDD financial support to provider and advocacy agencies. Every one of these programs allows individuals with disabilities to live with their families or in their own homes with supports they choose. The current situation is bad enough, with thousands of people on waiting lists for residential services. Cutting these programs will result in significant cost to the state of New York by forcing people with disabilities into institutional and restrictive settings.

Providing individuals with disabilities and their family members with advocacy and OMRDD support services makes good fiscal sense. These efforts promote solid, productive citizens who become contributing members of their communities.
Everyone benefits.

Our lives, and that of our daughter’s, have been significantly improved because of the services we received. Please ensure
that now, and in the future, all New York residents have the
same opportunities.


Jackie Yingling

(Jackie's daughter Rachel signed with Jackie and her picture was on Jackie's written testimony, but I can't transfer it here.... grrr!)

Pat Muir Gives Testimony Before the DDSO

Commissioner Ritter, and members of the forum, thank you for giving me the opportunity to speak on behalf of my son and other adults with autism about the need to develop a state wide training curriculum in autism, which should be mandated for all direct service providers. My name is Pat Muir, and my son, Nathan, is a twenty six year old young man with autism. This issue is the one that most profoundly impacts Nathan’s ability to live the adult life he wants.

In high school, Nathan was included in regular classes, helped manage the boys basketball team, participated in recreational activities, and had a summer job at a local day camp. He cooked meals for the family and his regular chores included mowing the grass each week. Support from trained educational staff was critical to help him accomplish his goals in preparation for his self determined future.

A reaction to a prescribed medication caused a significant behavioral regression. Over the next several years, Nathan’s world shrunk to the size of a small bedroom in a certified group home. But his dreams remained the same: to take care of his own home, to work and to be part of his community.

In order to regain the skills he had lost, support and accommodations provided by trained staff persons would be critical. We assumed that voluntary and state agencies would provide support staff having a solid basic understanding of autism, how it can impact learning and behavior and best practices for supporting individuals in their communities. After all, OMRDD agencies are in the business of providing supports, accommodations, and training to individuals with developmental disabilities, including autism. However, we learned that individuals who provide direct care are not required to have education or background in human services or developmental disability. And while OMRDD regulations set general categories for instruction of providers, it is left to each individual agency to decide on the extent of trainings, so there is no established standard.

Today, Nathan lives in his own home with support from residential habilitators. New employees must attend two full weeks of training before they can begin to deliver any direct service. But out of those two weeks, only 30 minutes are spent learning about autism.

When Nathan was first included in a regular classroom, the school psychologist gathered the team and told us that for inclusion to work, we must all agree that Nathan could NOT FAIL. Any failures would be ours, because it was up the team to provide needed supports.

Musical Minds on NOVA Features Partner' Son

Submitted by Kathy Giordano, Class of O4.

June 30 at 8pm on PBS (in Rochester), NOVA will be showing the Oliver Sack's documentary, Musical Minds, that features Matt. (See the brief news article below.)

I hope that this show will bring more awareness to large numbers of people (NOVA is the most watched PBS show.) You may want to encourage people you know (relatives, neighbors, teachers, Dr's, therapists, etc) to watch. It's a fascinating show about how brains work and the impact that music has on people with disabilities.

To find your local schedule click here.

Check out this promo video.

Here is the item that is on The Advocacy Center Website:

Local Percussionist Matt Giordano to appear on NOVA

by Pam Merkle

Musicophilia, a book by Oliver Sacks, is the inspiration for an upcoming episode of the PBS series NOVA. On Tuesday, June 30, 2009 at 8 pm, NOVA will feature "Musical Minds - Oliver Sacks explores how the power of music can make the brain come alive."

In this show, Dr. Sacks explores how the power of music can make the brain come alive, how music affects the brain and how it can impact some neurological disorders.

Rochester area percussionist, Matt Giordano, and his mother, Kathy, appear in the show. Matt, who has Tourette syndrome, talks about the impact of music on his life. Matt, pictured here, recently performed at The Advocacy Center's Night of Hot Jazz and Cool Art.

Dr. Sacks is also scheduled to appear on The Daily Show with Jon Stewart on Monday, June 29, 2009 to discuss his book.

Matt runs a music business and holds drum circles as team-building for businesses and also for people with disabilities. To learn more visit Drum Echoes.

Partners Gathering

Some of the Rochester area Partners Grads who attended the Night of Hot Art and Cool Jazz for The Advocacy Center this June.

Ann Kurz, Class of '05

People from the Partners classes of '06, '07, '08, and the regional splinter class in Long Island in 2008 will recognize Ann as one of the speakers at their Partners sessions. Ann and Kathy McCarthy-Proulx (fellow Partners grad--1994--and full-time advocate from The Advocacy Center, pictured above)have presented on the importance (necessity) of a compelling personal vision in creating quality lives for people with disabilities.

Over the past couple of years Ann has shared in those sessions that life in her condominium in a highrise was quite isolating. She shared her vision of living in a home in a neighborhood with things like greater access to the outdoors, and more contact with neighbors.

You will all be happy to know that Ann closed on her "house in a neighborhood" last fall and after renovating it for accessibility she and her cat, Tia moved in this spring--and the parties have already begun. (The photo is from a dinner she hosted for high school friends recently.)




Ann continues working on the new house, a most impressive--and accessible--ramp to the front porch were added this week.

Everything begins with VISION!

Jennifer Machucki, Buffalo, Class of '03

I learned about the Partners in Policymaking program while I was a social work intern from the University at Buffalo completing my second year internship at the Self Advocacy Association of New York State. In May of 2001, I graduated from UB with my MSW and was hired by the Self Advocacy Association as an AmeriCorps Member. After completed my term of service with AmeriCorps, I applied and was accepted into the 2003 Partners in Policymaking class.

Since graduating from Partners I worked for the WNYDDSO as a social worker from April 2004 to February 2005. Also in 2005,I bought a condominium in Williamsville NY. I used some of skills I learned in Partners to obtain a Community Development Block Grant from HUD which I use to improve the accessibility of my Condominium. The skills I learned in Partners also helped me find a way to have my cat Candy declared an emotional support animal so we could remain together despite the condominium's no pet policy. My experience in Partners gave my the confidence I needed to take the social work licensure exam which I took and passed with flying colors in April of 2005. I finished the test in less time and got a better score than my sister which was a pleasant surprise to both of us.

In June of 2007, I got a job as a Transportation Coordinator at People Incorporated and became an aunt for the first time. My niece \ god daughter Claire loves music, dancing, cats and being spoiled rotten my her aunt "Denny" I am looking forward to becoming an aunt again in August.

I've been a member of the Developmental Disabilities Awareness Day planning committee since October of 2000. When I first became a member of the committee, I didn't know anyone on the committee nor had I ever been to the conference. For these reasons, I sent my first year on the committee listening to what was said at meetings and doing what I was asked to do. Over the past nine years, I have developed good working relationships with the other members of the committee, I actively participate in meetings, have a clear understanding of my role on the committee and regularly volunteer to participate in television interviews that publicize the conference. Next year I will be the chairperson for the tee-shirt committee.
In April of this year I lost my job at People Incorporated. I am currently job searching and considering my career options. I am thinking about writing a book, becoming a Life Coach or learning to train service dogs.

Picture: Jennifer Machucki '03 (bottom L), Terri Abrams '02 with Speaker, Kathie Snow (bottom R) at Developmental Disabilities Awareness Day in Buffalo 5/09.