Lillian Davis spends many of her nights at an Orono nursing home wide awake. Deceived by advanced dementia, the 83-year-old loses sleep for days on end tidying imaginary messes in her room or talking to visitors who aren’t there. Sometimes, the nurses push her wheelchair under a table and lock the brakes so she can’t wander off, according to her daughter, Susan Philbrick.

Lillian’s days are marked by insulin shots for her diabetes, a stroll in her walker if she has the strength and the darkness that comes with blindness. Frequent falls and health scares have landed her in the hospital more than once.

“It’s by the grace of God that she’s still alive,” said Susan Philbrick. She visits the nursing home every other day, trading off with her 88-year-old father. One small comfort is that Lillian still recognizes them both.

Lillan’s round-the-clock nursing care costs $10,000 a month. MaineCare, the state’s version of the federal Medicaid program, pays for all of it, while Medicare foots the bill for other costs.

“At $10,000 a month, it does not take long for your money to go,” Susan Philbrick said. “We depend on MaineCare for her coverage.”

As a senior citizen with multiple health problems living in a long-term care facility, Lillian fits the profile of MaineCare’s most costly recipients. The LePage administration is studying this group as part of an effort to improve care and cut costs.

According to the Department of Health and Human Services, which administers MaineCare, 5 percent of the program’s beneficiaries account for 55 percent of the spending. In other words, about roughly 17,200 individuals represented $1.2 billion in claims payments in fiscal year 2010 data.

DHHS Commissioner Mary Mayhew has cited the “top 5 percent” statistic during negotiations over her department’s $220 million budget shortfall. Putting a dent in such a lopsided spending pattern will take far longer than the year and a half now at the fore of the administration’s and lawmakers’ minds.

“This predates the budget gap that became apparent at the end of last year,” said Dr. Kevin Flanigan, medical director of MaineCare services. Flanigan is heading up DHHS’ analysis of the top MaineCare spenders.

Maine isn’t alone in funneling a majority of its Medicaid dollars to a narrow slice of recipients, he said. “It’s pretty close to uniformly true across the country,” Flanigan said.

The ratio extends beyond the taxpayer-funded Medicaid model, as well. Including private insurance, half the country’s population spends nearly nothing on health care while just 5 percent account for half of total spending, according to the Agency for Healthcare Research and Quality. In 2009, the bottom 50 percent of the population represented barely 3 percent of overall health costs.

The country collectively spent $2.6 trillion on public and private health care in 2010, averaging $8,400 per person, the federal government reported earlier this month. In Maine, the most expensive MaineCare recipients average $74,215 annually.

As is the case nationally, the elderly and the disabled account for the bulk of the top 5 percent of Medicaid spenders in Maine. Just over 60 percent of high-cost members are disabled and 27 percent are 65 years of age or older, according to data compiled and analyzed by the state Office of MaineCare Services and the Muskie School of Public Service at the University of Southern Maine.

Like Lillian Davis, nearly half of the costliest recipients are also eligible for Medicare. That presents a particularly thorny problem because MaineCare, as the secondary insurer, is left to pick up any costs the federal government doesn’t cover, Flanigan said.

“We have little capacity to exert influence over the care [those recipients] receive,” said Flanigan, a former primary care physician.

DHHS is working to reduce those costs and improve patients’ health through a pilot project in which doctors lead teams of providers to coordinate each individual’s care, Flanigan said.

The department is also working with hospitals to identify patients who are using emergency rooms unnecessarily and redirect them to more appropriate care, he said.

“So far, it’s been an enormous success,” he said.

About a third of the priciest 5 percent of MaineCare recipients visit the ER in a given year, and most of those trips could be avoided, Flanigan said.

Overall, DHHS’ goal is to move some of those within the top 5 percent of spenders into the next lowest cost bracket, Flanigan said. Many may now be missing out on less expensive preventive or support services, he said.

“It can be done. It’s going to take a lot of data analysis to get there,” Flanigan said.

He expects several months will pass before DHHS can act on its analysis of the top 5 percent. Down the road, as doctors, hospitals and other providers begin to implement smarter strategies, Flanigan anticipates a “snowball effect” of fewer emergency room visits and acute health problems.

Some of MaineCare’s costliest users, however, are so needy that DHHS can barely scratch their expenses.

“Some of this is just the cost of health care. … Chemotherapy costs what chemotherapy costs,” Flanigan said. “Bypass surgery costs what it costs.”

Then there are those with severe mental health issues, like Shelly Brown. The 46-year-old’s long list of diagnoses includes intellectual disabilities, borderline personality disorder, cerebral palsy and epilepsy. She’s known to be so violent that the furniture and other potentially dangerous objects in her Auburn home must be bolted down.

“Sometimes it takes three or four people to restrain her,” said Brown’s legal guardian, Bonnie-Jean Brooks. “She has injured many people over the course of her lifetime, both men and women.”

Brown became a ward of the state at just 18 months old. Brooks assumed guardianship when Brown turned 18.

All told, Brown’s medical expenses top $370,000 per year. Much of that results from wages for at least two trained staff to attend to her at all times, Brooks said.

Brown is covered by MaineCare through a special program for members with disabilities. MaineCare spent $294 million on the home and community based waiver in 2010, making it the largest single claims expense among the costliest beneficiaries, according to DHHS.

More than 40 percent of the most expensive MaineCare recipients use some kind of mental health services.

Brooks, who is also founder, president and CEO of OHI, a Hermon-based agency that supports people with mental disabilities, believes DHHS could find savings by targeting MaineCare’s priciest beneficiaries. But as previous belt-tightening efforts have proven, some people simply can’t do without the help, she said.

“It has to be done cautiously and it has to be done intelligently,” Brooks said.

Jackie Farwell

I'm the health editor for the Bangor Daily News, a Bangor native, a UMaine grad, and a weekend crossword warrior. I never get sick of writing about Maine people, geeking out over health care data, and...