Ann’s Story

“I am living my life the way I choose.”

Ann loves to garden. She belongs to a book club. She has an annual subscription to Geva Theater and plays bells in a choir at church. She has worked for Wegmans for 32 years and she is on the Al Sigl and several other Boards in the community. She lives in her own house, volunteers at a cat rescue center, and enjoys caring for her five cats. Ann has cerebral palsy, but nothing is stopping her from having the life she wants.

One reason for that is the self-directed program offered through EPI. The program, funded through the NYS Office for People with Developmental Disabilities, offers people with developmental disabilities a chance to use their funding for programs and services they choose. Instead of attending a day program, people like Ann can bring services into their homes or use them for assistance to go into the community — to cultural, creative, or recreational activities; health care services, volunteer opportunities, or whatever will open doors to enhance their lives.

Ann appreciates the benefits of designing her own program and has made the best use of it. “EPI has afforded me the freedom to determine my own ‘brand’ of services and, thus, has enabled me to truly live my life the way I choose,” she said.

After graduating from Trinity College in Washington, D.C. in 1983 and living at home for a year, Ann shared an apartment with a friend and received home health aide services.  After her friend married, she began to live on her own. During that time, self-direction didn’t exist and she basically relied on friends and family for social outings, running errands, and shopping.  “It was hard to participate in any community activities – especially in the evenings, so besides working, I spent most of my time alone in my home,” said Ann.  Services introduced in the 2000s enabled her to run errands and socialize, but she was not happy with the limitations/restrictions of those services.

She heard about self-directed programs in 2004, started developing a plan/budget, and eventually instituted her plan in early 2009 with another agency. But, she found that the agency’s restrictions on self-hiring multiple staff severely limited her.

Upon seeking a new agency, she discovered that EPI had just begun offering the services and would stand behind her self-directed service choices. So, in August 2012, she switched to EPI and she is glad she did.

EPI serves about 700 people in the self-direction program and Ann was one of the first. “We are serving more people because Ann showed us that this is an important service and so meaningful,” said Jeff Sinsebox, EPI President. “Her services and support allow her more options so she can focus on her quality of life. Why should someone with a disability be told what to do? Ann knows what is best for her and it’s important to us to help her create the life she wants to have.”

“Self-direction is one of the best things that I’ve been involved with in my life,” said Ann. “It gave me the freedom to live my life the way I really wanted to live it, to have choices that, for people without a disability, are ‘givens,’ and to participate in community activities based on my interests and abilities.”

Learn More about Developmental Disabilities