Terry’s Story…..
Terry lived in an 80-bed Intermediate Care Facility (ICF) in southern Ohio for 43 years. Four hours away from his family, they would visit as often as possible, but ultimately they didn’t get as much time with him as they wanted.
Susie, his sister and guardian, said, “we would drive 4 hours to see him, then take him shopping for the things he needed in the closest town 45 minutes away. When we got back to the facility, he would run off because he was excited to show everyone what he got. Then it was time for us to leave,” said Susie.
When Terry was school-aged, he was one of the first children able to attend the Van Wert Thomas Edison school when it opened. “I remember Mom was excited because up until that time, kids with developmental disabilities just stayed at home. I was just a kid at the time, but I knew it was a big deal when the Thomas Edison school opened,” she said.
Susie recalls Terri playing at home before he was able to attend school, and her mom taking him to physical therapy appointments an hour away, twice a week, for years. Her parent splitting up, and her mom having to work, was part of the decision to send Terry to an ICF.
She recalled some bad experiences at facilities he attended prior to his last facility. “During one visit to a facility (that ended up closing down later), my parents discovered that Terry had scabs all over his body because of sunburns on top of sunburns that weren’t prevented or treated. They moved him out of there, but I think about these kids that didn’t have advocates for them,” said Susie.
“Back in the day (when it was time to leave) he would cry, and it would be just horrible. And you are thinking, there’s got to be a better way than this. But there wasn’t. There were very few places that anybody could go,” said Susie.
In 2016, it was Susie’s daughter that had urged her to investigate getting him closer to the family. “I didn’t know how we can do that, and I wasn’t familiar with the housing options,” said Susie.
She asked around and her son-in-law knew about the Van Wert County Board of DD (VWCBDD). She was connected to Tina an SSA (Service and Support Administration) at VWCBDD. In November 2016, Tina and Susie began the transition process.
“There were so many pieces to put into place. We had to get all his doctors and medical needs figured out,” said Susie.
“It took us 6 months to get him home. We had to find a provider and he needed specialists lined up. We had to take all the paperwork and formulate a plan,” said Tina, SSA.
Through the VWCBDD, Terry qualified for a funded waiver to get out of the facility and get back into the community. Funding was also available for getting furniture and living essentials for his new residence.
Terri’s 2 year anniversary of being back home is coming up. He lives with two other men in a Van Wert County Housing Board home, and one of his roommates attended the Thomas Edison school with him as a boy. He loves holidays, and he has a tree at his house he can decorate for all the different holidays.
Susie said her biggest concern was making sure this was the best decision for Terry. “This isn’t about us, this should be about him. Is this good for him?” said Susie.
It was good for everyone. Terry is very happy attending the Thomas Edison Center during the week, where he has become very social and loves making crafts and painting.
Another convenience, Tina explained, is that Terry can visit with his psychiatrist through Telemedicine right in the conference room at Thomas Edison Center.
Susie has 9 grandchildren and said that Terry calls them his grandkids. “He is crazy about family. And now he can be a part of the holidays and the birthdays. It’s just nice to be able to stop out and see him,” Susie said.
“I’ve been in this job for 27 years, and this is one of the coolest things I’ve done in my career,” said Tina. “He’s so happy.”