Joe Romig and his wife, Samantha, are learning how to live together on their own with less assistance from caregivers.
Photo by M. Scott Moon
Joe and Samantha Romig live in a quiet apartment on South Forest Drive in Kenai. Every morning they wake up at 7:30 and begin their day with a bowl of cereal or a few microwaved waffles before embarking on their respective routines.
During the day Samantha sorts shelves at Home Depot or disinfects toys at Little People's Learning World, a day care center run by Samantha's brother in Soldotna. Joe hangs around the house doing chores or watching football until he too begins his cleaning job at Frontier Community Services. When they're together they enjoy visiting with their families, playing Trivial Pursuit and other games.
Though their lives seem simple, as a couple living with Down's Syndrome, Joe and Samantha face struggles unique to most married couples. Approximately six hours a day, not including two weekends a month and Sundays, a caregiver from Frontier Community Services helps Joe and Samantha run errands, cook their meals and offers transportation. During the two weekends a month caregivers aren't available, Joe and Samantha spend time at their parents' houses instead.
"I get a lot of work out of them," said Jean Romig, Joe's mother who lives in Cooper Landing. "(There's) hauling and stacking wood, they've got a couple of dogs to entertain and they can walk everywhere."
"It's kind of like a workout," Samantha chimed in.
Last July, a cut in the budget that provides for Joe and Samantha's care at Frontier Community Services threatened to split them apart. A decrease in funds meant a decrease in the number of hours a caregiver was with them, which meant Romig and Samantha's mother, Doneva Baker, would have to look after them. Joe and Samantha would vacate their Kenai apartment and move back in with their mothers.
Rather than let that happen, Romig and Baker negotiated with Frontier Community Services staff, its director Ken Duff and Allison Seymour, developmental disability specialist for the Alaska Division of Seniors and Disabilities Services, to try to rearrange the hours Joe and Samantha would be cared for in order for them to live in as safe an environment as possible.
"Their supervision was cut in about half," Baker said. "(Frontier has) added at no charge a medical alert button if there's an emergency. The bad news is that they need one of those, we would have preferred that there would be supervision there. If they pushed that button that means something has already happened, we don't want something to happen."
Since their care hours were cut, Joe and Samantha find themselves doing things, and making decisions, on their own most of the time. For Samantha, this often means finding her own transportation to work. When their caregivers are with them, they usually provide transportation, but since their hours have been cut, Baker said Samantha has spent approximately $250 a month in taxi bills.
Working two hours a day, four days a week at Home Depot and two hours at her brother's day care center in Soldotna, Samantha doesn't make enough money to cover her transportation bills, but having a job is more valuable.
"That would be a stupid choice for me," Baker said. "But for her to have a meaningful life that's filled with normal activities and responsibility like everyone else, paying more for the taxi than you actually make at your job is good for her."
Another thing that's changed because of the decrease in supervision hours, Baker said, is that prior to the change, she and Samantha would talk approximately three times a week. Now, Samantha calls her mother almost five times a day to get her opinion on things ranging from whether she should call a cab to what day she and Joe are going to get their allowance.
When a caregiver was around, these things would be taken care of, but because Baker said Samantha needs the security of knowing what will happen, so phone calls between the two have increased.
While the limited hours may make Samantha uneasy sometimes, Joe says he's fine being on his own. Growing up in Cooper Landing, Joe knew how to get in touch with his parents if something happened. Joe and Samantha also know to contact their parents or emergency officials if something goes wrong now. And while nothing major has happened Baker and Romig hope nothing does there are a few things both parents would change.
For one thing, Baker said she would like to see Samantha making better food choices. With no one there to keep an eye on her, Samantha can eat whatever she wants as much as she wants. She's also worried about Samantha being home by herself.
"We want to do some role-playing so they can learn the right thing to say to someone who knocks on their door," Baker said. "We have to teach them and practice what it is they would say in that kind of a situation."
Even though there are some things both Joe and Samantha need to work on, the change in their care hours has been a positive experience overall. They're able to do their own chores, like laundry and cleaning, without someone reminding them. Joe and Samantha cook their own meals as long as they don't use the stove or oven and they find ways to amuse themselves.
Romig said she and Baker explained to Joe and Samantha that they would have to learn to be more independent if they wanted to stay together, and she says they've done a wonderful job.
"We had to let them know what was going to happen," she said. "(We said) this is what you have to do to stay together. These kids can do lots more than they're given credit for."
For Christmas the Romigs said they planned to spend time at Baker's house. Every Christmas Eve, Joe dresses up as Santa and fills everyone's stockings with toys and candy. Samantha's brothers and sisters leave him milk and cookies and encouraged Joe to come down Baker's chimney.
"I'm not going down there it's too small," he said grinning. "I'm going to get cramped!"
Jessica Cejnar can be reached at firstname.lastname@example.org.
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