Long-term care goes home

Staff photo by Jeff Pouland
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Ruth Cunningham, a registered nurse, cares for Evan Klane, 16, who has cerebral palsy, at Klane's home in Fairfield Center on Wednesday. Cunningham spends 43 hours a week tending to Klane.

FAIRFIELD -- Deborah Klane realized during a talk with her 3-month-old son's neurologist that her idyllic life was gone forever.

Cerebral palsy and severe epilepsy would shackle him to his bed or to a wheelchair for the rest of his life, leaving Evan forever dependent on others for his survival. Deborah and her husband, Jonathan, realized they couldn't take care of Evan alone, but they didn't want to put him into an institution.

In time, the Klanes, like growing numbers of people in Maine and across the nation, would find a way to care for their permanently disabled loved one -- in their own home.

But dreams often resist adjustment. At the time of Evan's birth, nurses had given gentle warnings that raising him wouldn't be easy, but it would take time for the new parents to grasp the full implications of the debilitating effects of their son's condition.

No dandelion bouquets from Evan would send Deborah scrambling for a vase. His crayoned cards would never grace her refrigerator.

"I was grief-stricken," Deborah said. "I didn't get over feeling miserable. I cried a lot. I was angry. I was ugly. I was very unhappy. I was heartbroken.

"He was my first child. I had been married to my husband for five years. We wanted a family, but not like this."

Her feelings went beyond sorrow. Caring for Evan required more than she had to give. Taking him to the doctor's office for a routine visit meant "double-bagging" him to prevent diaper leaks and making multiple stops along the way to clean out his tracheotomy. Evan's needs forced her into taking a dual role, one she began calling "nurse-mommy."

"I get scared," she said, "because I haven't been trained in that. It's scary. I get frightened. To tell you the truth, I'd rather just be 'Mommy.' 'Mommy' is hard enough."

Deborah and Jonathan decided that, to restore some semblance of normalcy to their lives, they would need help.

So, like 6,600 other people needing long-term care in Maine, they turned to the state to help them receive that care at home.

Evan, now 16 years old, is one of the youngest to join a trend in Maine that is being driven by the oldest segment of its population -- increasing numbers of people in Maine are requiring long-term care. They are choosing to bring nurses into their homes, rather than spending the rest of their days in institutions. Younger people needing care, such as Evan, also benefit from this trend.

The shift toward long-term care in the home begins with the increasing age of the nation's population.

Maine's advancing median age -- now in the mid-40s -- makes it the grayest state in the nation, and puts it at the fore of this shift, according to Diana Scully, director of the state's office of elder services.

"A lot other parts of the country are just now trying to move their people out of the nursing homes," she said. "Maine has been doing this for years and years. We are way ahead of the curve."

Scully said improved health care has enabled people to live longer, making long-term care a rewarding field, but protracted retirement years can bring their own set of problems, as seniors often require varying needs of care.

State legislators decided 10 years ago that coping with a changing, older demographic required a different set of rules, according to Carol Timberlake, administrator of Orchard Park and Edgewood Rehabilitation and Living Centers in Farmington. Tightened nursing home funding criteria enabled nurses to focus their care on those who need it most, she said.

And, since most people would prefer to live at home, rather than in an institution, it didn't make sense to keep putting them in nursing homes, Timberlake said.

Reducing the funds and number of customers flowing into long-term care institutions has caused several nursing homes throughout Maine to close their doors. It also has allowed the state to spend more efficiently, by putting more dollars into long-term home care, Timberlake said.

"If families are providing the bulk of the funding for the person's care in the home, it is much cheaper," Timberlake said. "The theory of caring for someone in their home is that it's less costly."

State dollars going to long-term care dropped from $3,073 per person in 1996 to $2,394 in 2004, according to Scully.

Long-term home care cost the state of Maine $12.6 million in 2004. Scully's figures show that the federal government also doled out $47.2 million in Maine during the same time period.

The number of jobs in this field has increased from 12,872 in 1996 to 17,670, according to Lisa Pohlmann, associate director for the Maine Center for Economic Policy.

The trend away from institution-based care is reflected in the fact that the number of nursing aides, orderlies and attendants has decreased from 9,862 to 9,080.

At the same time, the number of home health aides, personal and home care attendants has nearly tripled, jumping from 3,010 to 8,590. But even these increases are not meeting the demand for care, Pohlmann said.

"Right now, there are waiting lists, and sometimes, even if you're not on the waiting list, you are unable to get the care you should have," she said.

Pohlmann said that demand for long-term care has outstripped Medicaid reimbursement costs, forcing workers to provide services for "artificially low" salaries.

She is working with the Direct Care Worker Coalition to increase Medicaid reimbursements to workers, and expects to release the results of the group's findings later this year.

The funds that are available help people such as the Klanes carry on with their lives by paying for around-the-clock care. Working in 12-15 hour shifts, several nurses feed, clothe, change diapers, dispense medications, give massages and even plan to accompany Evan to high school, where he starts this year as a freshman.

"We can have a normal life," Deborah Klane said on a recent day as a nurse cleaned out Evan's tracheotomy. "I know the definition of 'normal' is wide-ranged, but we run a small business, and we're able to give our other child as regular a childhood as possible."

The Klanes use a team of nurses from Home, Hope and Healing, a private, for-profit agency that covers the state of Maine and employs about 150 nurses. Three nurses comprise the core of the team; an additional four or five are familiar with Evan and the layout of the Klane's house, and fill in at various times.

"These people are with you 24 hours a day," Deborah said "We've come to view them as members of the family. They are here during the sad times and the birthdays. They're here for all of it."

Ruth Cunningham, a nurse who has been working with Evan since he was 2 years old, said this approach provides more personal interaction.

"It's so much less stressful than it is in the hospitals," said Cunningham, who lives in Sidney. "You're one-on-one, so you can give him the kind of care he needs."

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