Without EI Where Would Our Children Be?

The Governor's budget contains proposals that will change the way Early Intervention is administered adding layers of bureaucracy. It is likely that these changes will force practitioners out of EI and limit access to these vital services. Below is my letter.Please join me and write as well!

Dear Senators, Assembly-members and Governor Cuomo,

All of the women you see in this picture with Senator Robach have developmental disabilities. The three closest to the senator live and work in the community, in the Rochester area.

The young lady on the left is my daughter, Jennifer. She is now 18 years old and participating in vocational training to one day live and work in the community as well.

To New York’s shame, living and working in the community has not always been the life-path for people with disabilities. We must never return to the horrifying history of institutionalization for people like my daughter.

Studies have shown that Early Intervention services lay the groundwork for the success these women are experiencing. While these women all need support, community based services and real jobs are not only better for them, they are less costly for “the systems” that support them than institutionalization could ever be.

I am very concerned that the current changes to Early Intervention services included in the Governor’s proposed budget will destroy service systems that exist in each county across the state, will force practitioners out of EI and limit the access to EI services for the children with developmental disabilities in NY. This is much more than a budget issue—this is a life-sentence for these kids, and for the state that will be supporting them for the rest of their lives. I believe that there are ways to address the fiscal needs of Early Intervention without these destructive consequences.

Please appeal to the Governor to maintain access for children with developmental disabilities to EARLY INTERVENTION and prevent high quality independent contractors and agencies from closing their doors.

Sincerely,

Terri Abrams (NYS Partners in Policymaking, 2002)

The Autism Insurance Law Signed!

Partners Grad Michael Smith and his son Alexander witness Gov. Andrew Cuomo signing the Autism Insurance Bill into law. For more information (and more pictures!) see this article.

Jan Fitzgerald, Director of Parent to Parent of NY, Class of '94

Another Partner in the news! Click here to read the article.

Partners in Action in Syracuse

You've seen the pictures, now click here to read the article!

Julie Marks '08 and Deanna McManus '06 Networking

The premier meeting of networking group for young professionals with disabilities was held this week in Rochester. And among this group of up-and-comers? Two Partners Grads (of course!) Click here to see the article from the Rochester Democrat and Chronicle!

Mike Smith Class of '08: Not Just One...But 2 Interviews!

YouTube - Sabrina Dhammi interviews Mike Smith of FAIR for Channel 13 in Albany. Mike wrote the bill that has recently passed in NY with John Gilmore of the Autism Action Network and Austism Speaks.

And another interview with Phil Bayly also of Channel 13. (Mike is actually the chairman of the Foundation for Autism Information and Research, Inc.)

Partners in the Media: Jim Swart '04

The advocacy and support Jim Swart '04 provides for fathers of kids with disabilities through his job at NY Parent to Parent is featured in an article in The Leader Herald! Click here to view the article!

And Happy Fathers' Day!

Partners in the Media: Julie Buick '06

Partners grad, Julie Buick '06, is interviewed by YNN in Rochester about the Autism Insurance Bill. Click here to view the story!

Tina Fitzgerald Class of '05

Tina Fitzgerald and her husband Rick

Tina Fitzgerald from the Class of 2005 puts her Partners training and her social work background to work for people with disabilities.

Since graduating from Partners Tina has worked as a Medicaid Service Coordinator and later for Americorps until health needs forced her from the workforce.

But her health has not kept Tina from disability advocacy.

Last year Tina and her husband Rick trained to be Election Inspectors and Tina completed further training to become an Election Machine Technician. They worked both the primary and general elections in 2010 in their town of Mattydale.

Tina is Vice President of Disabled in Action, an advocacy group made up of people with a variety of disabilities and people without disabilities. With this organization Tina has organized and participated in many initiatives:

• Advocacy with participants in the Consumer Directed Program with participation from the ACLU to develop oversight for caregivers that is respectful of individuals' civil rights.
• Advocacy with the local paratransit program through recent budget cuts and fare raises to maintain (not lose) current routes and to streamline the application and assessment processes.
• Hosting forums to allow politicians and people with disabilities to dialog about their positions and their needs.
• Recruiting advocates.

Tina is involved in the CNY Community of Practice and is working on compiling a Survival Guide for people with disabilities who are being forced to live with fewer service coordination supports in the current budget crunch. She hopes to make accessing community supports in her region easier for people.

In February Tina was interviewed for The Post-Standard by reporter Sean Kirsh for the article, Unshoveled Sidewalks: Syracuse flunks the 'walkability' test.

While working for Americorp this past March Tina organized a coat drive through One Warm Coat. Over 100 coats were collected for the Salvation Army.

This week Tina and DIA, along with other disability groups and local unions will hold an "Informational Picket Line" at the Federal Building in Syracuse. They will be protesting local lawmakers' efforts to replace Medicare and Medicaid with voucher programs. These program changes will cause hardship for people with disabilities.

"I pull out my Partners training A LOT!! Partners is very empowering.

Partners taught me how to wield my strength as a self-advocate beyond my friends and acquaintances. Partners gave me a lot of confidence!"

Helene Fallon, Class of '06

Helene Fallon and Arne Duncan, US Secretary of Education

Helene is a another very active Partners Grad!

In her "day job" Helene is the Training Coordinator for the Long Island Parent Center and also the Training Coordinator for the Long Island Advocacy Center.

And in her "spare" time??

Helene co-facilitates NYS Communities of Practice for Family, School and Community Collaboration. This COP includes many stakeholders including the NYS Education Department and works to support outcomes for children.

She is very involved in Communites of Practice and one of 14 Activity Leaders from around the country for the IDEA Partnership where she represents families. In this role she participated in the Office of Special Education Programs' Thought Leader Forum on Education from Cradle to College and Career in Washington DC last week. This workgroup included stakeholders from around the country and the results of this forum will be reported to the US Department of Education.

Since graduating from Partners in 2006, Helene started the Long Island chapter of the Learning Disabilities Association and she is their Executive Director and on LDA's statewide board.

She was also instrumental in starting the Long Island Community of Practice 3 years ago. The organization was started to bring the not-for-profit organizations of the region together to share resources and disseminate information about each others' events (they have a list-serv that goes to >15,000 people!) The organization also hosts Long Island Regional TRAID (for assistive technology) and hosts free, inclusive recreation events for children with disabilities and their families on the East End of Long Island.

Helene is also on the NYS Task Force for Higher Education and Systems Change working on teacher preparation especially in the area of including families in educational planning and implementation.

Helene teaches a class for graduate students at Long Island University called Schools, Collaboration and Consultation.

"I had had a number of trainings and experiences before I went to Partners,

but it is Partners that made me able to do the work that I do!"

Michelle Appleby, Class of 2006

Ginny Ellis, Kathy Connor ('02), Michelle Appleby ('06),
James Huben, Aldea LaParr

When I was participating in Partners in 2006 as a self advocate, I was serving on the Board of Directors for the Northern Regional Center for Independent Living and I was a stay at home mom to my two daughters. When both my children reached preschool/school age I decided it was time to go back to work.

In December 2007 I stepped down off the Board of Directors at Northern Regional Center for Independent Living and took a position as a Systems Advocate.

My role as a Systems Advocate was to work with a grassroots network of 19 other Systems Advocates in New York State to make changes on the local,State and Federal levels of government.

These changes were to improve the quality of life for people with disabilities.

As a result of this position, and  in order to make connections and build relationships with policymakers, politicians and various agencies in the community, I was appointed to the Jefferson County Community Services Board and PWDD Subcommittee by the Jefferson County Legislature in April 2008.

I served as PWDD subcommittee Chair in 2010 and I was re-elected as chair for 2011.

In June 2008, I received the Excelsior Award For Excellence from the New York State Assembly for outstanding dedication and committment to my community!

In February 2009, I was appointed by Governor Paterson to the Developmental Disabilities Planning Council and to the Systems Change and Community Eduction Subcommittees.

In January 2011, I was appointed by the Watertown City Council to the Watertown, NY Transportion Commission to fill a vacated seat. I was re-appointed in April 2011 to serve in my first 3 year term on theCommission.

Although my position as a Systems Advocate was eliminated due to budget cuts in January 2011, I still remain active in all positions on the city,county and state level.

In February 2011, I accepted a full time position at Community Action Planning Council of Jefferson and Lewis County. In this positon I work as an Intake worker and serve as the contact person for Fair Housing
Discrimination Claims.

As an intake worker I work one on one with low income families to assess what needs they may have in achieving self reliance and refer them to programs and services that might help them achieve that goal.

If it werent for being accepted into Partners in 2006, I don't know how much I would have improved "quality of life" for my children and I.

With the knowledge I obtained thru partners I feel I am able to contribute not only my own personal knowlege and experience of programs and services to the various clients and positions I serve in but also provide a better understanding of how programs and services work to people with disabilities and their families who need this information.

I think Partners definitely empowers people to make a difference whether its personal or professional.

The sky doesn't have to be the limit. There are endless possibilities :)

NYS Partners in Policymaking Class of 2011--It's a Whole New World!



Ann Kurz, Joyce Steel, Nancy Hinkley

 The 2011 NYS Partners in Policymaking class is underway. While many things are familiar to Partners Grads, this year's class gets to do lots of things that are new to Partners in NY: web content, discussion groups and webinars.

Technology has arrived!

The new class has around 70 members. Half of them work on line and meet, and half work entirely on line.


Jim Huben from the DDPC and Partners Working on Vision Boards



The meeting group met last week in Ithaca. Kathy McCarthy-Proulx and Ann Kurz presented on "Vision". The Partners created vision boards for themselves and for their children. Partners presented their vision boards to the group. They shared their stories. They heard "the microphone is your friend!" Al Condeluci presented...

Just like the 'old days.'



Partner Jay Bea In Person!


But it is NOT the old days!!!

The entire program was presented in real time as a webinar to the at-home learners--and when it came time to present, the on-line Partners were able to post a photo of their vision board and speak right in to the room about their own visions.



Sharing Vision On-Line!


Partners on and off line commented about what they had learned--and about how connected they were beginning to feel!

(I have to say, it gave me chills!)





Trish Wasburn: The United States of Autism

Trish Washburn ('06) and her family from the Albany area is one of 19 families from around the country who will be featured in the upcoming film The United States of Autism.

See news footage of the filming in Albany.

Read about the filming at Camp Colonie and Hippotherapy .

The film's website is here.

Wretchers & Jabberers: The Partners Connection

Partners Grad Jennifer Russo (2007) is the Marketing Director for the Syracuse University School of Education and of the newest film from award-winning producer and director, Gerardine Wurzburg and producer Douglas Bilken, PhD from Syracuse University. Jennifer designed the t-shirts, banners and promotional materials. She will get to travel with the film when it premiers in other parts of the country.

Partners Grad Jennifer Seybert (also 2007) was also involved in the screening. She is attending Syracuse University for a Masters in Disability Studies and was handing out literature when I saw her. Her typed comments added much to the Q&A session after the movie.


The film, Wretches and Jabberers, tells the story of two men who have autism and, after years without a communication system, learned in adulthood to communicate by typing. The two men, Larry Bissonnette and Tracy Thresher travel with their support people, Pascal Chang and Harvey F. Lavoy, and a film team to Sri Lanka, Japan and Finland to "bring people's understanding of disability to a positive place."

The movie primiered October 16, 2010 during the Syracuse International Film Festival and was followed by a panel discussion with the film stars and team. In the spring the movie will show in major cities like New York and Chicago.

For my review of the film click .here.

Attention Partners: This movie needs to show in your town!!

This is What Happens when BOTH of Your Parents are Partners Grads!

Meeting Governor Patterson!

Daven Whalen: Town Hall Trainings

Dave Whalen, Partners Graduate Class of 2007 started a new initiative this past spring.

A couple years back Dave proposed that his town, Amherst (outside of Buffalo) create a disability committee, the town did and appointed Dave to it. It turns out that every town government can have a disability committee to help them address physical accessibility, accessibility of civic participation, access to leisure, as well as training for emergency first responders. Dave found that creating a committee was a great way to build relationships in his town and he was able to help his town avoid hefty DOJ fines for inaccessiblity.

In the process Dave met and became friends with Dan D'Andrea, a citizen in his community who uses a wheelchair and is very interested in access, especially in town parks and recreation. The two put their heads together and together with Aimee Levesque, D'Andrea's Charitable Trust, and The Advocacy Center developed a training for people in other communities wishing to build access in their towns.

The first training was held at People First in Buffalo this spring and other trainings will be scheduled around the state this fall and next spring. Dave hopes that soon every community will have a disability committee giving input and increasing access as a matter of course.

You can read more about the formation of Town Hall Trainings and one of Dave's other projects, accessbuffalo in this article.

The Inaugural Town Hall Training Class (4 Partners in attendance!)

Trish Washburn 2006

Trish Washburn has been very active advocating for people with Autism. She is pictured here with her children CJ and Buddy volunteering at the Albany Chapter of The Autism Society of America 5K Walk/Run this past September. The second picture is CJ and Buddy with State Senator McDonald at the walk.

Trish was also very active advocating against the Autism Insurance Bill that is currently on the desk of Gov. Patterson to be signed. She feels that this bill will actually make it more difficult to get needed services for people with Autism. She and her family were also featured in a documentary about families impacted by Autism this summer,--read the articles about it here and here.

Partners Grads and the Media

Partners Grad, Bonnie Watson (2006), addressing the media about the sold-out conference about Autism and Social Skills for Upstate New York For Effective Autism Treatment that she helped organize. (Partners grad Julie Buick, also from the class of 2006, can also be seen in the right background!)

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!)