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Phillip Thomas, a 38-year-old Cobb County resident, lives with a rare genetic disorder that affects less than 20,000 people in the United States: Prader-Willi Syndrome. The syndrome causes obesity, intellectual disability and behavioral problems.
Perhaps even rarer than the syndrome itself is the friendship between Thomas and Andrew Alterman, a 50-year-old Cobb resident who also has the syndrome. The duo have been living together with two other roommates and caretakers in the Ruth Hardin House, a group home in the South Cobb area, owned by Special Needs Cobb.
Special Needs Cobb, which rebranded from Right in the Community, recently celebrated 65 years of providing housing, respite care and support services to Cobb residents like Thomas and Alterman.
For Debbie Day, who has been executive director of Special Needs Cobb for the past two and a half years, the organization is about more than just meeting the bare minimum needs of their residents: she wants to provide a sense of community, structure and belonging.
“We give them a sense of security, that they’re going to have a place to stay, they’re going to have three hot meals a day,” Day said. “They’re going to have a chance to go out in the community and participate in things just like everybody else.”
‘A sense of independence’ Currently, Special Needs Cobb houses 92 permanent residents in 23 homes around Cobb County, with one located in Bartow County. The houses are staffed with caregivers 24/7. According to Day, they want the homes to cultivate a sense of freedom in their residents, and stay as far away from an institutionalized environment as possible.
“It gives them a sense of independence that they would never have if they lived at home. It allows them to move forward in their life and have a progression,” Day said.
The residents keep busy: their regimented schedules include a breakfast at the home, a day program until mid-afternoon — activities like arts and crafts, or cooking meals to pass out around Cobb County — social time in the evenings and another meal.
For Thomas’ mother, Kay Hiott, this organized schedule is crucial to his well-being.
“Phillip has learned how to bathe himself, he’s learned how to brush his teeth, make up his bed, he has his own room that he cleans and takes care of,” Hiott said. “It’s not just that they go there and sit. They get up and move.”
The structure is particularly pertinent for Thomas and Alterman — Prader-Willi Syndrome causes insatiable appetite, according to Hiott, and the home’s structure maintains a strict diet and exercise routine.
“Every day, Phillip gets on his bicycle and pedals, and Andrew gets on the treadmill,” Hiott said. “When Phillip went to live in the group home, he weighed 315 pounds. He got on a regimented diet, and he’s lost weight. He feels so much better.”
The home, however, isn’t an all-work-no-play environment for Thomas and Alterman.
“Sometimes they get into little schemes together,” Hiott said. “They play tricks on the staff, just being funny. And they’ll go get coffee together.”
For Hiott, there’s a peace of mind that Thomas gets to live a comfortable life in a safe environment.
“He lives a life that is his, and is good for him and everyone around him be rest assured that Phillip is being taken care of,” Hiott said.
Hiott’s confidence in her son’s security is also available in micro-doses through SNC’s respite program. Families can drop off their special needs family member for as little as a few hours or as long as the entire weekend.
“It’s a chance for a family to experience what it’s like to have some assistance with caregiving, but yet not commit them to a full-time residential option,” Day said. “It’s such a lifeline to these parents and caregivers that just need a break.”
The Hard NumbersAccording to Day, SNC receives approximately 30% of each permanent residents’ social security checks for rent in the group homes. The remainder of rent cost, which ranges from $375 to $480 depending on the home, is covered by the Department of Housing and Urban Development.
For members of the special needs community in Cobb County, the process for getting a bed in a SNC house can turn into a years-long process.
First, the individual must apply for the residential portion of the Georgia Medicaid waiver to live in a group home— a process that has a waiting list of 6,000 people in Georgia, according to Hiott.
“To get (a waiver) is like gold. Once you get it, though, you’ve got it for life,” Hiott said.
After the waiver’s approval, a Medicaid provider evaluates the individual and determines which group home would work best. If the provider determines a SNC home would be the best fit, they contact Alexis Hall, housing manager at SNC. Hall generates the leases for the individual and finalizes the move-in process.
The waiver paperwork is tedious, Day said, and SNC provides assistance to families in the process of filling out the paperwork.
Home: The Greatest Gift For Hiott, Thomas’ discovery of a permanent home where he can be himself is of the utmost importance, and she said they’d found it through Special Needs Cobb.
“What makes me feel good is, when I leave, (Thomas) is like, ‘See ya!’ That’s his home,” Hiott said. “Seeing him smile when I come to see him, that’s the greatest gift.”
When Hiott gave birth to Thomas, she said she was unsure what their lives would look like as he grew older, but his home has provided a sanctuary.
“I won’t be here forever, and then others come and go, but I have that good feeling,” Hiott said. “I haven’t always had that feeling. As a parent, when your children are younger and they’re disabled, you don’t know what the world holds.”
According to Day, most permanent residents, aged 18 to 85, live in their group homes for life. Day said she wants residents’ experiences to be validated and fully immerse them in the Cobb community.
“(Residents) are already dealing with the special needs aspect of their lives. We want them to feel fully welcome. They’re just as welcome in society as anybody else. It’s just the whole mainstream versus segregation, and we’re big proponents of mainstreaming them into the community.”
Thomas said that he and Alterman’s favorite ways of integrating into the community is going on weekly outings around Cobb, including their plans for an upcoming Braves game in September.