A few weeks ago, I visited with a woman who impressed me with her kindness and courage. A woman in early her 60s, she has cultivated and lived a life filled with love, friendships, and family. This became evident as I gazed upon proudly displayed photos in her home while waiting patiently as she received phone call after phone call from friends and family eager to connect with her. Her life was not without obstacles. She has had a heart surgery and two strokes which left her paralyzed on her right side. Her greatest fear is the thought of losing her independence and the ability to remain in her home.

The purpose of my visit was to discuss with her services available through the CDR’s Consumer Directed Personal Assistance Service Program. This program could allow her to continue to live her life as she always had – independently. Through our program, she could manage her own personal care services. The ability to control who she hires and fires, schedule when they come and how often, will give her back some of the control she lost due to the strokes and heart surgery.

It is unfortunate that these types of programs haven’t always existed. I remember things being very different when I grew up in the small rural community of Willard, New York. Across the street from where I lived was Willard Psychiatric Center, where both of my parents worked for 35 years. Willard Psychiatric Center was a state institution for individuals who were diagnosed with mental illness and/or developmental disability. Many of Willard’s residents needed hands on assistance with their personal care. This assistance included help with dressing, eating, toileting, showering and taking medicine.

For the residents, Willard was home, but it was not what anyone would want for their home. Everything in their lives was dictated by the state. I remember that the bedrooms were dingy and institutional, without personalization. The halls were bland and filled with people sitting in oversized, clunky wheelchairs at the beck and call of staff. Residents were dependent on the staff to be treated with respect, dignity and integrity. This definitely was not always the treatment received. Some residents were able to voice their concerns while others did not have that ability.

Seeing the conditions at Willard Psychiatric Center shaped my life. I went to college to become a Social Worker. While attending college I worked for Lakeview Mental Health where my main responsibility was to help individuals remain on their own in their apartments. We worked on finances, housekeeping, menu planning, shopping, scheduling doctor appointments, and advocating for their own needs. From there I went to work in a nursing home. The hardest part was to see the sadness on the faces of residents as they watched their family members leave to return to the comfort of their own homes. The family members had a look of emptiness and guilt for not being able to care for their loved ones in their home, due to lack of resources.

Today, I work for the Center for Disability Rights, as Assistant Director in the Consumer Directed Personal Assistance Service (CDPAS) Program. Since I have been employed with CDR, I have met many wonderful people and shared many stories, similarities and frustrations. I work in CDR’s satellite office in Geneva. In the office with me is Myrna Zayas, Supervisor Support Specialist, who is fluent in English and Spanish. Our goal for this year is to outreach to the Hispanic and Migrant Populations in Wayne County. I am intrigued by the fact that all my past experiences are related to my current job and the values and mission of the Center for Disability Rights.

My goal is to let everyone know that there are services available to help maintain your independence. If you know a person any age who wants to remain at home, please call me at (315) 789- 1800. If CDPAP is not the program for you it will be my pleasure to provide other resources.