AHRC New York City Focuses on What’s Important to the Person
Samantha Cheung was not happy about her move to AHRC New York City’s Rossi IRA in Staten Island, NY. The 19-year-old wanted to return to her parents’ home.
Staten Island parents, Peter and Susan Cheung, were unhappy seeing their daughter so miserable.
“Samantha wanted no part of anything to do with us, from non-sociable behavior to eating alone in her room and multiple episodes of challenging behaviors,” recalled Victor Manneh, who had joined the residence as a Direct Support Professional a few months after Samantha in 2007, and is now Residence Manager.
‘I’m Happy in My Home’
Today, however, Samantha’s life has changed. “I’m happy in my home,” she said recently. Those words may seem impossible for anyone who knew her 12 years ago.
The Cheungs were very involved parents, doing their best to help Samantha, who goes by Sammy, to transition to her home. They cut down on visits and when that didn’t work, they increased visits, which included activities of Samantha’s choice in her bedroom. But none of the efforts seemed to make a difference. Samantha was still unhappy.
Seminar Sparks New Approach
Then Susan heard AHRC NYC’s Dr. Carole Gothelf, Associate Vice President, Individualized Supports, at a seminar discussing the Circle of Support and Person-Centered Planning (PCP). That seminar was the spark that would change Samantha’s life.
“Person-Centered Planning asks us to commit to thinking about life from the person’s perspective and then doing things differently. We worked to see where the system had to change to reflect what Samantha was telling us that she wanted and needed,” Carole said, adding that ongoing work is critical to sustaining person-centered planning over a lifetime.
The Cheungs and the AHRC NYC staff in Sammy’s home worked together to help her; a Circle of Support was created. “It’s hard work and demands a lot from people,” Carole said. “Samantha’s Circle of Support had made a commitment to do the work, to listen to Samantha, and to change. Sometimes we struggled, but we were always aligned in our thinking and our vision.”
Circle of Support
Victor remembered the first Circle of Support meeting on Oct. 26, 2010. The Circle included the Cheungs and AHRC NYC staffers Danielle Eilenberg, Residential Coordinator; Michael Weinberg, Associate Director; Wendy Lynch, Residential Manager, and Victor, as the only DSP. Carole facilitated the circle meetings.
Victor recalled working together and creating large diagrams that depicted what worked for Samantha and what didn’t, her likes and dislikes, who she enjoyed spending time with and who she would rather not be with, the conditions that led to her happiness and good health, what choices Sammy made and what choices others made for her and much more. These MAPS, began to describe what was needed to plan the future for Samantha. MAPS is a creative planning tool that uses both process and graphic facilitation to create a shared vision of a positive future for individuals and families.
“What was clear to many of us was that Samantha liked being asked for her opinion and given choices, as to when and how her day would progress,” Victor said. “And, we were committed to honoring those decisions.”
A Desire to Control Her Life
The Circle’s first breakthrough was recognizing Sammy’s desire to control her life. As time passed, everyone improved at looking for clues and listening to what Samantha was trying to tell them. Her anxiety decreased and she appreciated that staff and her parents were offering choices and giving her control. “It didn’t happen overnight, but Sammy was happier and she was making progress,” Victor said.
Enjoying House Vacations and Shopping
The group tracked Samantha’s achievements. “We were letting Samantha be Samantha,” Victor said. Over time, she grew more comfortable at the home and with her peers. She recently went on vacation to Lancaster, PA with her Rossi housemates. She enjoys visiting Barnes & Noble and shopping at Target. She’s also a member of the home’s Welcoming Committee for new people moving in. For Samantha, Rossi is home.
Giving Samantha a Quality of Life
“This has been a Godsend for Sammy, ourselves, and the staff,” Susan said. “It was a whole team effort to give her the quality of life. The Circle of Support changed her life. I can’t be more thankful for that.”