HOME AT LAST: Mother of severely disabled son fashions ‘good life’ for him, 2 others

WASILLA — Linda Giani wishes all group homes for the severely disabled were as warm and loving as the one she created for her son Brian and his two housemates in Woodfield Estates.

“They’re really quite spoiled here, but I wouldn’t have it any other way,” Giani said Wednesday while visiting Brian, 35, in the home she built for him about 10 years ago at 2930 Wanamingo St. off Seldon Road. “They have a very good life, and that’s exactly what they deserve.”

Not only do they enjoy around-the-clock attention and love from at least three individual service specialists at any given time, they have their own uniquely decorated bedrooms, three companion pets with their own physical challenges and regular trips to Broadway musicals in Anchorage and various other cultural outings.

They’ve seen “Mama Mia!,” “The Lion King,” and will soon see “Nunsense II” at the Valley Performing Arts Center. They visit the Anchorage zoo, take road trips to Seward and hang out at local craft fairs.

It wasn’t always that way for Brian, Michael Chase, 21, and Sherry Francis, 27, however.

All three are unable to speak, walk and feed themselves. They rely on breathing assistance, as well as intravenous nourishment and a complicated menu of medications. They also suffer from severe mental retardation, scoliosis of the spine and seizure disorders.

Being so defenseless and requiring such complex care, they’ve all had to endure substandard care and even abuse at some point in their lives, Giani said.

“You wouldn’t believe what they’d been through before coming here,” she said. “The whole reason I built this home for Brian is because he was abused by the agency in Anchorage that was supposed to be taking care of him. So I sued them and used the money to build this place.”

She also used a special trust fund that came out of that lawsuit to custom fit the one-story home with a special ceiling track estimated to cost about $60,000 that helps transport the residents around the house on a large sling. This prevents their caretakers, who are all female, from having to lift them from their giant beanbag chairs in the living room, whirlpool tub or beds.

“You won’t see anything like this anywhere else,” Giani said. “It’s been a godsend for the staff. These guys are pretty heavy. And Brian, Michael and Sherry really like it. It’s like a carnival ride to them.”

Giani, however, made sure all the staff took a turn in the sling so they would know exactly what it felt like to be pulled around the house in it.

She even went for a spin.

“It feels a little weird,” she said. “You are totally at the mercy of the person operating it. You just have to trust they won’t go too fast or somehow drop you.”

But that’s what Giani loves about the crew working in that house. She loves and trusts all of them and they love the residents and their time with them.

“We’re pretty invested here,” said Amber Stewart, one of several ISPs working there for the last several years. “It’s like our own little family. I love them all. I guess you could say I’m a very compassionate person. You have to be.”

One additional luxury they now enjoy is being able to taste real foods for the first time in their lives after undergoing swallow tests to make sure they wouldn’t choke.

Sherry, for instance, got a taste Wednesday of some tomato bisque soup from Stewart.

“She loved it,” Stewart said. “She had a huge smile on her face. No mistake about that!”

It’s the little things like that that most people take for granted that can really make a difference in their lives, Giani said.

Too many people tend to treat the severely disabled as less than human, Giani said. And that has to stop, they all agreed.

“It takes a lot of work to keep these guys healthy and happy and out of the hospital, but they deserve nothing less as human beings,” house manager Betty Tunnell said. “They communicate in their own ways with their faces and gestures and sounds and really do understand quite a bit of what’s going on around them,” Tunnell said. “We know when they’re uncomfortable or don’t like someone. And they like to tease us, too.”

Michael, for instance, knows when there’s a shift change among the crew and if he thinks he’s not getting enough attention from the ladies when they’re all gathered in the home, he’ll intentionally hold his breath until someone comes to his aide, they said.

And they all love the two dogs and cat that live there with them. Manny, a large short-haired dog, was rescued at 6 months old by Giani after he’d been run over by a car and lost his right rear leg. Gretta, a large long-haired dog, lost her sight about a year ago after suffering a seizure.

And Daisy the cat was born cross-eyed and without front claws.

“They are wonderful companions for them,” Giani said of the animals. “The cat thinks he’s a dog and even uses the back yard to relieve himself.”

Hiring a professional “pooper scooper” about six months ago to clean up the yard has been a lifesaver for Giani and the staff.

“They already work so hard, I couldn’t ask them to pick up poop, too,” Giani said.

Giani stressed that the home is a licensed care facility funded through Medicaid, Social Security and other income from the clients because she is their legal guardian.

Michael's family lives in the area and is a part of his life. But Sherry’s family is from rural Alaska and doesn't have regular contact with her, although Giani tries hard not to judge them too harshly, she said.

“Having a disabled child is very difficult,” she said. “I took care of Brian for 20 years while raising him and his two brothers and thought he would get the care he needed after that, but I was wrong. I’ll never make that mistake again.”

She said others trying to design similar assisted living facilities have come to her for advice over the years. She said she’s been told that she has the nicest facility in the state.

Although she takes pride in that, it also makes her worry about all the other group homes out there.

“Very few facilities are operating anywhere near close to this,” she said, adding that although she lives in another house three miles away, she spends a lot of time on Wanamingo Street. “I’ve had to fight tooth and nail to make sure they get everything they need. I just love them all to death. That’s why I’m always here.”

Contact K.T. McKee at kate.mckee@frontiersman.com or 352-2252.