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Her goal is a well-educated staff at the Arc

When Shelley VanLare R.N. speaks of the need to care for developmentally disabled people—and to properly train their caregivers—her passion for her work comes through.

“If we don’t have validated and well-educated staff, our individuals aren’t going to benefit from anything,” said the registered nurse and quality improvement coordinator for the Arc of Monroe County. “We have to focus on them almost as much as we focus on the human beings we support.”

VanLare has put her dedication, knowledge and educational skills to work for the Arc of Monroe County since 2011.

The Arc provides therapeutic, rehabilitative, vocational and other services for the developmentally disabled, as well as residential facilities. While the non-profit refers to its charges as “individuals,” VanLare sometimes falls back on the term she learned as a nurse, “patients.”

VanLare began working with developmentally disabled patients over 37 years ago, at a state facility about an hour from New York City. She soon developed a strong desire to help and advocate for her patients.

“These are people who have the same needs and rights as patients as you and I do, but didn’t have a voice,” she explained. “It sort of brings out that passion … almost like ‘mama bear’ instinct.”

VanLare has come to be known for her expertise, particularly for geriatric patients who are intellectually disabled.

“Some people might not have developmental—or physical—disabilities, but they have intellectual disabilities,” she said. “You can have one and not the other.”

Her ability to specialize in this manner reflects how much the care of the developmentally disabled population has changed through the years, and the positive effects of those changes.

“Thirty-seven years ago, my patients didn’t live to be 80 years old,” she explained.

At the Arc of Monroe County, VanLare trains nurses and other staff—primarily those in residential facilities—in the proper ways to care for developmentally disabled and intellectually disabled individuals. Her educational approach is definitely hands-on.

“Shelly is not afraid to roll up her sleeves and to work alongside a staff member to help them better understand how to administer proper care,” said ARC chief operating officer Mara Huberlie.

The behavior of those who are disabled can be difficult to understand and frustrating for those who work with them. Individuals who have dementia, for example, might ask the same question multiple times, even after receiving an answer. VanLare strives to help those she works with understand the roots of and cope with such behaviors without growing frustrated.

“She recognized very early on that it was important to have dementia training for the staff in order for them to deal with it,” Huberlie explained.

At the same time, VanLare has made use of her knowledge and expertise regarding the end-of-life issues that the agency’s aging population can face.

“She is there to help guide the team … in regards to proper paperwork, but also proper care of our individuals,” said assistant administrator Andrea Greene. “She helps staff understand why decisions have been made, and how they can better support the individual during this very sensitive time.”

In addition to working with her agency’s nurses and direct care staff, VanLare also supervises its Guardianship Program. Those who volunteer in the program advocate for individuals who are incapable of making decisions on matters ranging from housing to end-of-life care. Huberlie says she is particularly suited for the job.

VanLare shares her knowledge with others in her field. She has done webinars on the issues that can emerge with aging, and she has traveled to other states to speak at conferences.

“Shelly is a fierce advocate and not afraid to challenge the system if needed,” Huberlie said. “If you want somebody to be on your side, you want her.”

Mike Costanza is a Rochester-area freelance writer.

3/20/15 (c) 2015 RBJ Health Care Achievement Awards. Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email rbj@rbj.net.

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