The Arc of Alachua County hosted a ribbon-cutting ceremony Tuesday morning for Century Oak, its new group home for adults with Prader-Willi syndrome (PWS). PWS is a genetic disorder that affects appetite, growth, metabolism, cognitive function and behavior. Six of the 61 people with PWS that receive treatment from the Arc will live in the house at 1811 NW 9th St. in Gainesville.
“This home is safe, secure, warm, inviting and represents a chance for them to live their life in the community,” said Mark Johnson, the development and public relations director at the Arc of Alachua County.
Century Oak is the 16th home the Arc has provided for its clients and the ninth for people with PWS, said Steve Drago, the executive director of the Arc of Alachua County.
At the group home, staff will train the residents to overcome the challenges caused by the disorder, such as chronic feelings of insatiable hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity. Some of the tools the Arc offers are diet and exercise planning, cooking classes and educational and vocational training, Drago said.
Residents will have the option of living there permanently, but they may choose to leave at any time they, their families and their service providers see fit, he said.
“The goal is really their goal,” Drago said. “They tell us what they’re looking for, and we help them achieve it. If their goal is to live in their own house, we’re going to help them do that.”
About 13 people with PWS who have received training from the Arc progressed enough to now live semi-independently in their own apartments.
Many people with developmental disabilities often face discrimination when looking for housing, or they struggle to find affordable options tailored to their needs, Johnson said.
Building homes for people with PWS is important because otherwise, many of them would be institutionalized and unable to contribute to the community, Drago said.
“They’re great people,” Drago said. “They’re wonderful to have around, and our community is better when they’re in it.”
“Any time people out in the community get to know our clients, they realize there’s nothing to be scared of,” said Judi Scarborough, the grant writer for the Arc.
Scarborough helped secure the funds for Century Oak from the Florida Housing Finance Corporation, which granted $367,000 for the project. In three years, her work has obtained a total of about $2.1 million in 17 grants for the Arc from several organizations.
“I like to take big ideas and turn them into projects,” she said.
Building homes is important to her because it alleviates parents’ burden and helps them take care of their children with PWS, she said.
“If you need to stay awake 24/7 to watch your child, you just can’t do it,” she said about parents trying to care for their children with PWS without help.
In the Arc’s houses, staff members take turns to assist clients whenever they are home. This includes 24/7 attention during weekends, she said.
“We consider ourselves a family more than a provider,” Johnson said about the Arc. “Certainly, families feel that as well.”
However, residents will not spend all their time at the house. For instance, they go to the Arc’s main facility for training Monday through Friday, and many of them have jobs, Scarborough said.
Johnson hopes the growing number of group homes provided by the Arc will increase awareness of PWS among the community of Alachua County.
At the ribbon-cutting ceremony, Arc of Alachua County Board Treasurer, Ben Doerr, expressed his fondness for the Arc’s clients and people with PWS.
“They inspire us,” Doerr said. “They have taught us goodness, kindness, courtesy, respect, and most of all, gratitude. They never forget to say ‘thank you.'”
“Not only do we celebrate the opening of this beautiful home,” he said during his speech to attendees. “Let me suggest to you that we celebrate the good people that we serve, who seem to return back to us just as much as we give them.”