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.

Tina Gabel, Class of '03

Tina Gabel, an experienced project manager, works closely with families to develop innovative transition plans for youth with disabilities. In her transtion practice, Tina helps families navigate the complex NYS disability and benefits systems in order to create meaningful life plans. Tina provides assistance with strategic planning, project management and service coordination of comprehensive family directed plans.

As a highly competent and caring professional, Tina uses a person centered approach to empower individuals to reach their potential. Tina works in close collaboration with agencies, state departments and local community resources to identify and obtain personalized supports and services for individuals and their families.


Tina is a married, mother of two children with a strong background in disability advocacy, self determination, person centered planning, self employment for persons with disabilities, transition services and personalized service development and planning. Tina is also experienced in corporate project management and innovative assistive technology.

Tina has trained with Dr. Beth Mount in person centered planning techniques and is trained in Medicaid Service Coordination and individualized budget startup/support brokerage in NYS. Tina has attended NY Medical College for a graduate program in Developmental Disabilities and also received training in IRS Pass Plan development. Tina is also trained in conducting assistive technology evaluations for students with disabilities.

In her free time, Tina enjoys beading, knitting and yoga. You may have seen her at Bead & Purl in Rhinebeck, NY a retail store she owned and operated in 2006-2007. Bead & Purl was a small business designed to “host” the embroidery business run by her daughter who has a disability.

Tina says,"My husband and I spent last year developing a not for profit Medicaid Service Provider agency to work with the niche population of youth in transition. We wanted to specialize in helping youth who "fall through the cracks" in the systems. Unfortunately, last fall, Medicaid funding was frozen for new OMRDD related projects and we put the provider agency on hold.

So, I began to work with families to assist them with the complicated and frustrating process of moving from the school system which is entitlement based; to the adult systems which are eligibility based with long wait20lists. We are now considering "evolving" the not for profit concept into something more directed at comprehensive person centered planning along with information/referrals and service brokerage rather than providing actual Medicaid services and supports."

Check out Tina's new blog here.

Joe Gerardi, Class of '93: Self Determination

This video is all about Joe's son Joey and Self-Determination. His son is living a life anyone would want!!!