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Difficult decisions

Dwindling funds make couple's future uncertain

Posted: Tuesday, July 24, 2007

 

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  Samantha's mother, Doneva Baker. Photo by M. Scott Moon

Samantha's mother, Doneva Baker.

Photo by M. Scott Moon

Joe Romig proposed to Samantha Baker like any man would — down on one knee.

"I thought it was going to hurt," he said. "It was OK."

But Doneva Baker, Samantha's mother and guardian, nixed the idea at first.

When the bride and groom both live with Down's Syndrome — a genetic disorder in which a child is born with an extra chromosome — and are unable to drive, coping with a distance as short as 10 miles can be rough. With Joe working at the Soldotna Burger King and Samantha living in Kenai, Baker didn't think the marriage would work.

"I started looking for a job in Kenai," Joe said. "I started to work in Safeway."

"So I didn't have an excuse," Baker added.

 

Samantha cooks breakfast with close supervision from Donna Mahaffey, one of her in-home caregivers from Frontier Community Services.

Photo by M. Scott Moon

When the big day came on June 24, 2001, the novelty of seeing each other in gown and tuxedo and riding in a limousine was too much.

"It was like Cinderella," Samantha said. "We went to the senior center and I got to smash (Joe's) face in the wedding cake."

Joe and Samantha currently have their own place on South Forest Drive, across the street from the park where they like to play on the swings. A block away is the beach where they go for walks. And if Joe and Samantha feel like staying home, there are a variety of books and movies, games to play, television to watch and the Web to surf.

"I'm an inside or outdoor kind of person," Joe said. "Sometimes I'll say (to Samantha) let's go to the park and swing."

As clients of Frontier Community Services, a local nonprofit agency that helps people and their families live with disabilities, Joe and Samantha are placed in an environment where they can learn how to function in the world around them while socializing with their peers. Programs range from habilitation classes and camping trips to job placement and coaching.

Services also include supported living, where a caretaker keeps an eye on Joe and Samantha while teaching concepts ranging from what to buy at the supermarket to the best thing to do in an emergency.

"My wife teaches sculpty clay," Joe said pointing at a green hippopotamus on their coffee table. "We do an exercise movement class and swimming."

 

Above, Joe Romig cuddles with his wife, Samantha, in their apartment in Kenai while they listen to a conversation about how budget cuts at Frontier Community Services could force them to live separately. Both have Down's Syndrome and receive extensive — and expensive — help from the agency.

Photo by M. Scott Moon

Joe and Samantha's services could soon change, drastically upsetting their daily routine and life in general. Due to the increased cost of living and dwindling grant money, Frontier Community Services told Baker and Jean Romig, Joe's mother and guardian who lives in Cooper Landing, they were going to have to cut the budget that provides for Joe and Samantha's jobs and recreational programs.

"Cutting out activity would be one way to cut down the budget," Baker said. "They wouldn't have cooking classes or camping trips and it saves money."

But Frontier isn't just looking at cutting jobs and recreation. A cut in Joe and Samantha's budget could mean a cut in the number of hours a caretaker supervises them each day. Already, Joe and Samantha are supervised 18 hours a day, Baker said, when it used to be 24 hours.

Another cut in Joe and Samantha's care would mean they would have to live with their respective parents, forcing them to separate, Baker said.

"Joe and Sam love each other," Baker said. "They don't want to move."

Ken Duff, executive director for Frontier, said if you had a developmental disability such as Down's Syndrome prior to the early 1990s, you had to be placed in an institution in order for Medicaid to pay for your care. If your disability wasn't severe enough to warrant placement in an institution, you had to go to agencies like Frontier for the services you required.

"They would have to look at state general fund dollars to support you in your home," Duff said. "If you were 30 years old with Down's Syndrome and your parents needed a break, grant dollars could pay for respite care to come in and give (your parents) a break, that was some of the examples."

Those grant dollars are intended to pay for services Medicaid doesn't cover. In the early '90s, the state Legislature passed the Mental Retardation and Developmental Disability (MRDD) waiver that would allow people with Down's Syndrome and other mental disabilities to receive care in their home rather than an institution.

"One of our beliefs — and there's some research that backs this up — is that people do better, wellness wise, when they're in their own homes and familiar environment," Duff said. The MRDD waiver allows for in-home care, supported employment and job coaching and other programs. "All of the services are individualized, if two folks are a couple, it impacts both of them and their lifestyle and need are considered together," he said.

Duff said the waivers are funded by the state and federal government, but only those who are eligible for Medicaid are able to receive them. Those who aren't on a waiver system have to get their service through grant dollars funded solely by the state.

"Two things have happened with grant dollars," Duff said. "They have gone down consistently over the past 10 years ,plus the cost of care has gone up."

In 2001, Duff said Frontier Community Services received approximately $900,000 in grant money. But in the past fiscal year, the agency only had about $600,000 to work with. With 43 clients, including Joe and Samantha, depending on them, Frontier has to find a way to accommodate everyone.

"It's one of those positions as an executive director of a social services agency that you want to go screaming out into the night," Duff said. "It's a no-win situation. You want to be able to provide a service, but you don't have the dollars to pay for the service."

Baker and Romig have tried enrolling Joe and Samantha in Medicaid's waiver program, but have only succeeded in getting wait-listed.

"We've been waiting 12 years for a federally funded (waiver)," Baker said, adding that waivers are given to people based on their level of need. "Wait list isn't wait, it's weight. Joe and Sam don't score."

With more than 1,000 people waiting for Medicaid waivers, the chances of Joe and Samantha receiving one is slim. Duff said a client's level of crisis determines where they're at on the list.

"If you don't have a waiver, but you need service, the only other resource for you is grant dollars," Duff said. "There's a finite number of dollars in a grant and there's 'X' number of people that need to be served in the various categories."

Baker, Romig, Joe and Samantha sat down with Duff and his staff Friday to try to come up with a compromise that would save money but still provide the level of services Joe and Samantha need to live together. Joining them by phone from Fairbanks was Alison Seymour, developmental disability specialist for Alaska's Division of Seniors and Disabilities Services.

Working with more than 13 social service agencies in the Kenai Peninsula, Valdez, Fairbanks, Delta and Tok, Joe and Samantha's situation isn't unusual.

"We're seeing this happen regionwide as far as individuals perceiving that they're in crisis because of the dollars not stretching as far," Seymour said. "This is actually the only instance that I personally have experienced so far this fiscal year, but I am one of many regional specialists."

After nearly three hours of discussion, both parties reached a tentative compromise. Seymour said they came up with good concrete possibilities for rearranging hours and for Baker and Romig to support Joe and Samantha, and are looking to have what she thinks is a workable schedule as soon as possible.

"That's the kind of constructive planning that we really need to do," Seymour said. "When we got to that point, we came up with good concrete ideas on how we could rearrange (hours) and make everybody safe, especially the recipients, who have to be the ultimate ones that are happy with the plan."

But Baker wasn't nearly as satisfied as Seymour.

"An agreement isn't what got reached, it's negotiations," Baker said.

"They're not budging, but they're helping us figure out what we're going to give up."

Although Joe and Samantha said they would be disappointed to give up day-hab and Joe's job, Baker said she would choose safety over employment and recreation.

"Safety is more important to me than employment and employment is important for their self-esteem and for their life to be normal," Baker said. "Employment would be second after safety and then recreation."

When asked if Joe and Samantha could both come live with her, Baker said she offered them an apartment above the garage. But Joe, who has been living on his own for 10 years wouldn't be comfortable with that.

"It's wrong for him to regress," Baker said. "I volunteered to make an apartment for him and Samantha and he does not want that."

Another thing that surprised Baker was Joe and Samantha's presence at the meeting. Seymour said Joe and Samantha's presence was important because she and Frontier's staff needed to hear from them, as well as their guardians, but Baker was worried about the level of stress the meeting would leave with Joe and Samantha.

"I think the stress is a little too hard," Baker said. "I wouldn't have chosen to have them there."

Baker said she gave Samantha a homework assignment to keep her mind off the meeting. Otherwise, it would be the only thing she would focus on for the rest of the day.

"I asked her if she was reading a book at home," Baker said, adding Samantha had replied she was reading "Forest Gump." "I wanted her to read one whole chapter and then call me and tell me what it says. It would give her a chance to get her mind off this one thing."

As of Friday afternoon, Baker and Romig agreed to take turns having Joe and Samantha over to their houses for one weekend a month. Joe will not have as many day-habilitation hours as before and Friday recreation night is out, as well. Baker also said they gave up morning hours of supported living in exchange for evening hours.

"Eight o'clock in the morning is not as critical as 10 o'clock at night," she said. "If we gave up mornings, one weekend (of care) a month and day-hab two days a week that would give us some hours."

To Seymour, the Romig's situation was a perfect example of the dilemma many social service agencies are in.

"The dollars that are appropriated, if they remain the same, don't buy as much service," she said. "People have to do different types of planning in order to have their needs met."

Duff said although he probably disagrees with Baker and Romig on the level and type of care Joe and Samantha need, he hates being forced make these kinds of changes.

"I would love to be able to give them supported living, and I heard real clearly from them that they both love going to day-hab and Joe loves his job," Duff said. "To pull them both away because we have to make the bottom line work, that pulls at my heart strings. That's one of the worst things about my job."

How do Joe and Samantha feel?

"They're confused," Baker said. "They don't know what's happening and why. It doesn't seem fair to them, it doesn't seem fair to me either."

Jessica Cejnar is a reporter at the Clarion. She can be reached at jessica.cejnar@peninsulaclarion.com.



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