Hard times hit agency for terminally ill children

Posted Sept. 02, 2008, at 10:43 p.m.

BUCKSPORT, Maine – In the photograph, Corey Atwood looks as if he’s dying. His arms are stick-thin, his eyes large and dark in his hollow face. His dark hair is thin and patchy. He is seated in his wheelchair. His parents and other family members stand behind him, their expressions unreadable.

“He looked like a refugee,” said his mother, Kiki Atwood, shaking her head, remembering. “He was starving himself.”

That was almost three years ago, and Corey, now 19, looks nothing like the emaciated youngster in the picture. His muscular dystrophy keeps him using his wheelchair for getting around, but he has gained 40 pounds, grown a head of thick, glossy, dark hair and isn’t shy about discussing that low point in his life.

“The part of me that didn’t want to live was stronger than the part that did want to live,” he explained matter-of-factly during a recent interview in his family’s Bucksport home. “But I wasn’t telling anyone how I felt.”

That changed when the Atwoods found the Jason Program, a Portland-based hospicelike agency just for children, which, through its services, gave the family hope and helped Corey find some quality of life. But the stability the family has achieved is in jeopardy if new funding sources cannot be found to keep the Jason Program operating.

The Jason Program works with youngsters who, like Corey, have terminal medical conditions. The program can get involved in a child’s care at any time, unlike hospice, which is limited to stepping in only during the anticipated last six months of life. And while hospice rules require families to give up aggressive treatments and the notion of finding a cure, the Jason Program can help prepare a family for a child’s eventual death even while supporting the quest for a miracle.

“The families of children do not want to give up hoping for a cure,” said Kate Eastman, executive director and founder of the Jason Program. “We provide what hospice provides, but we’re there much sooner and much longer.”

Many of the program’s young patients are diagnosed with genetic disorders at birth, while others develop unstoppable forms of cancer or other diseases. In every case, the Jason Program steps in to support grieving parents, coordinate home-based services, educate schoolmates, and work with other agencies to identify unmet needs and fill in the gaps.

Some of the services provided by Jason Program staff are paid by MaineCare, the state’s Medicaid program for low-income individuals. But according to executive director Kate Eastman, it’s barely a drop in the bucket.

“When we started the Jason Program in 2000 … we expected 30 percent of our income to come from MaineCare reimbursements,” she said in a recent phone interview. But due to changes and reductions in state and federal spending, only a small fraction of that amount comes in from MaineCare, she said.

Making matters worse, a prominent national foundation that has supported the program in the past recently withdrew its funding, citing the nation’s economic downturn.

“That’s why we’re in such trouble,” Eastman said. “The reason the Jason Program is in the difficulty it’s in today is because of the economy, pure and simple.”

Corey Atwood was born with Duchenne muscular dystrophy, a genetic disorder that causes progressive muscle weakness, eventually affecting the heart and lungs. Statistically, it is unusual for individuals with this disorder to survive beyond their 20s. Corey admits to having courted death through starvation rather than continue down the weary path toward heart failure, pneumonia and other likely outcomes.

But three years ago, with the support of the staff at Jason Program, he decided to fight for his life.

The program staff — which includes a physician specializing in pediatric pain management, a social worker, a registered nurse and a minister — counseled the despondent teenager through his depression and helped him understand how desperately his parents wanted to stop his decline.

They told him how boosting his nutritional intake with supplementary tube feedings would help him gain back the weight he’d lost and invigorate his depleted immune system’s ability to ward off lethal infections. They discussed how using a respirator at certain times of the day would help him breathe more effectively and help keep his lungs and heart healthy.

Most importantly, they left the decision to pursue these and other options in Corey’s hands, trusting that he had the information he needed to make an informed choice. And he did, electing to accept the feeding tube and the respirator as tools to help keep him healthy and active for the indefinite future.

“Jason tells you that if you don’t want to live, it’s you’re choice; it’s all right,” he said. Paradoxically, though, “It made me realize it’s OK to live the way I am and not want to die because of the way I am.”

Staff from the program also connected Corey’s family with an area home health agency. Now, every day a personal care attendant or nurse comes in for several hours to help the young man bathe and dress, to massage and reposition his arms and legs in the wheelchair, to help with his meals and other activities.

“We had no idea he was eligible for any services,” Kiki Atwood said. “It turns out he could have someone in here 24 hours a day if he needed it.”

While the bulk of Corey’s day-to-day care now is provided by the local home health agency — and by Corey’s family — someone from the Jason Program visits about once a month to check on his frame of mind and make sure things are running smoothly.

“I can’t say enough good about this program,” Kiki Atwood said. “I’m scared to death we’re going to lose it.”

For the time being, the program is patching together its services, continuing to work with local agencies to support dozens of families around Maine, including several in the northern half of the state.

But time is running out, Eastman said. She needs about $65,000 to get through the remainder of 2008 without interrupting services to children currently in the program.

Longer term, she’s trying to find philanthropic support and to establish partnerships with existing health care providers, so the program can not only survive but expand, creating a stable statewide network of services to support Maine children and the families who love them.

On the Web: www.jasonprogram.org

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